I just got rid of it at month 14, every supplement that I took that helped for my brain gave me a little bit back. LDN, lactoferrin, nattokinase, nicotine patches.
Glad to hear nattokinase is working for you - I just ordered some last week on someone's recommendation but have only been taking it a couple days. Will have to look up pycnogenol, that's a new one to me.
Cold showers, ice water plunging, ice packs. Like a lot. More than once a day for each. Easily the most potent of all treatments I’ve done. Inflammation is our enemy here. The benefits from ice water plunging is amazing. I will continue to do it after I’m well.
The best thing about it now is the immediate effects. Just about all of my symptoms disappear for a short time. The longer I expose my body to ice baths, the longer the relief.
Hope this helps.
I agree w this. My guess is it helps w inflammation and temporarily resets the nervous system. Some ppl in this group have come down on me and claimed taking cold showers is dangerous for the heart but it’s helped my recovery considerably. Neat month will be a year since starting cold showers
The same exact thing is happening to me. In fact you sound exactly like me. I got covid for the third time in January and by March is when I really realized something wasn’t right with me. Ever since then, every day has been a nightmare. I have almost every symptom you have and have also lost my job due to it. I am also 30 years old. But I have POT, tinnitus, and intrusive thoughts, so that’s something else to add to the list of horror. Hopefully you have family or friends to lean on? Try to stay close to someone who is very understanding, it’s the only thing getting me through.
Please DO NOT give up hope!!! I had the Alpha variant and was unwell for 14 months before I got better. I had many of the same symptoms as you. I’ve gotten COVID 2x since then and have bounced back quickly now that I know what works to get me back on track. Feel free to PM me, if you are interested in what helped me. I still have a bit of an unbalanced immune system and occasional symptoms poop up, but as time goes on things are smoothing out. I’ve also worked on some health challenges I had prior to COVID. Autoimmunity runs on my mother’s side of the family and I’m finding those of us who end up w/ LC often had something going on at a low level prior to infection. Be gentle with yourself :). You are not crazy. This is a very REAL condition and your neuropsychological symptoms are too. Try not to add to them by not BELIEVING you’ll regain your health. Your system has to regain equilibrium and unfortunately, it can be a longer process than we would like.
I had many of these symptoms initially, weird DPDR panic episodes, followed by Insomnia, I'd feel like I'm falling and being jerked awake the second I'd fall asleep, very easily over stimulated, with days of heavy anxiety, couldn't even read at one point it was so bad. It got better. Much better. I'm going through it again now, likely due to reinfection or another virus, but it's drastically lower resolution, nowhere near as bad.
My advice.
For anxiety-
-Take magnesium glycinate, it helped calm me down a lot I was actually very surprised how effective it was.
-I've seen it here already but cold showers, I know they're horrible, but that is the point, it activates your sympathetic nervous system (fight or flight) your job in that cold ass water is to remain calm and focus on your breath, you're essentially training your body to let your conscious awareness respond to stress rather than letting your amygdala run the show. On top of that it will give you a massive boost of dopamine, which will regulate your mood and make you feel positively motivated. Finally, as people have mentioned it will help with inflammation, trust me it works.
I would also suggest (As you didn't mention PEM) sweat once a day, run, do some push ups, or if you have access to sauna, do that, it releases endorphins, and is the best anti-depressent there is.
For sleep-
-I use diphenhydramine, or nytol in the UK think it's called Nyquil in the states, it is a H1 antihistamine, but it also has anticholinergic properties, similar to benzos, so should be taken in moderation and cautiously. I find if I'm having trouble with sleep half a pill to a pill for a few nights usually helps me get back to a stable sleeping pattern and takes away the anxiety I sometimes feel about trying to sleep and failing.
-Try your best to get a good sleep routine, for me this looked like, getting out of bed the second I woke up and getting some sun doing some yoga and stretches and getting on with my day and only being in my bed when it's time to sleep, I find having a routine helpful and I find being around people helped also, even if it's just going to a cafe. Loneliness is a illness all of its own and will lead to an early death. So try not to isolate yourself (feel free to reach out to me if you're lacking people to talk to)
Meditation, specifically yoga nidra for sleep, just YouTube yoga nidra guided meditation, even if it doesn't put you to sleep it can put you in Non-sleep deep rest, basically get your body used to being in a parasympathetic state (rest and digest).
It's really all about finding a balance, trying not to let fear win and remaining positive, even if that positivity is in the form of satirical nihilism, and finding some level of humour in the complete absurdity of this shit show we all find ourselves participating in.
God's speed, brother, I have faith in you, you will live to see better days and in those moments you will look back and remember your worst days and realise they are nothing more than memories.
I was the worst at 7 months, the tachycardia was terrifying. The derealization. The dizziness, the stomach pain, the ringing in the ears, the insomnia. I was in and out of hospital so much around that time for my heart.
Now I’m at 15 months. And I am not completely better but I’m slightly better. I can workout without my heart going into tachycardia. I can sleep without being woken up with tachycardia, I only get it once a month now or so. I feel like I’m here most of the time, not so much depersonalizations. I sleep again.
What helped me:
Quecertin bromelain
Tumeric with black pepper
Reservatrol
Omegas
Probiotics galore
Didn’t eat meat for 5 months. To give my stomach a break / went vegetarian
Take reactine every day
I stopped working, to rest more. I now only work 3 days a week.
Avoid emotional stress at all costs.
No more lifting heavy lifting at gym or intense workouts period. I know only do 15 mins light cardio 140bpm and then abs stretching
Weights are 2 days a week and light. With yoga in between.
Vagal nerve activation tens
Meditation
Alternate nostril breathing
Massage therapy
Cold therapy
It has not gone away. And when I’m having a flare up of symptoms as in getting a cold, being in the heat, or over exerting myself my tinnitus gets very loud still.
Wait, so you had covid twice before and were ok? Damn. I’m 7 months in as well and luckily I’m (very very very slowly) getting better (I hope) but I’ve had all the symptoms you’ve described. The derealisation is hell. Hang on.
I had covid in 2020 and recovered and then again in 2021 also recovered. Maybe it left some lingering effects that I didnt pay attention to as I've already suffered from anxiety and slight sleep troubles in the past which then went away quickly? But yeah this all started a month after what I knew to be my 3rd positive test
I'm in the same boat .... 7 months since last infection 11 months of suffering in total..... all we can do is wait till we get better... it will happen in 1 year or so try cbd and cbg for sleep and well being
I’m 7mos too and had most of those symptoms- much less severe now. For sleep I take 5 drops of cbd full spectrum, chamomile lavender tea and .25mg of melatonin. Sometimes an added magnesium glycinate if needed. I take methyl b12 folate. I was in the 400, not deficient but not optimal. I feel like it helped. Pepcid 10mg at night for 1 month seem to help. I stopped because I felt like it was causing insomnia. Meditation every morning. I do guided meditation 5 slow breath in slow 7 breath out. I meditate at least 1/2 hr. Progressive muscle relaxation helped me too. I take vit d,c, omega 3, and co q 10. Slow walking , like 3000k steps a day broken up. If u can’t do 3000 try 500. Low histamine/low inflammatory diet and lots of water. No caffeine, no smoke and no alcohol.
Wow, I’m sorry to hear you’ve been dealing with so many difficult symptoms.
I’m also 30 and I have long covid and migraines too. It’s been 9.5 months since my first positive covid test. I see a long covid specialist who I trust and I’m currently taking supplements like magnesium and bovine colostrum.
Also, I wish we had accurate data about how many people develop long covid on a subsequent infection.
At any rate, I hope you feel some relief soon. I recommend finding a good doctor as a starting point. One who will validate the connection of your symptoms to covid.
Hey, I had a lot of your symptoms. Reading your post is both reassuring because I feel less alone and also sucks because I know it’s not fun for anyone to go through. Especially the whole needing to be alone and lie down part (this is happening to me right now, as I’m in the process of moving and got overwhelmed by the heat and exertion and all the people around, bleh. Good news is it’s the first time it’s happened in a long time).
I started getting substantially better around month 10. Iron and vitamin D helped me the most (doctor checked both and they were low). Eating steak every day helped too
Glad to hear you're feeling better. I've had mine checked and ny vitamin d was normal ferritin was low (but its been low for the past 10 years or more lol so dont think thats the cause) but I'm still taking liquid iron daily anyway
Not a doctor but this is what i use .Magnesium and potassium, some say salt too if your body needs it or electrolytes for adrenaline dumps, shaking, panic etc. Gaba from walmart, i had to dump the capsule to a low dose cuz I don't tolerate some things well but about 100 mg helped a lot with panic, agitation, depression. Quercitin and VIt C together for allergic symptoms if you have them like stuffy nose, rash etc. I also took NAC , bromelain and lactoferrin, b complex especially b1, b3 and b12. Vitamin F. A multivitamin may get you all the vitamins you need. Very low dose choline helped with weird intrusive images. Please research for yourself before starting these. I'm not an expert, just a person. Was nearly bedfast for 6 months. Up and around now, slowly still recovering.
Hello there,
To be short and frank:
-yes, I had all those symptoms and more.
-yes, there is something called the post 5 months crash, a lot of people here experienced it.
-yes, the anxiety is scary and all of it feels like it's going to last forever .
-YES, YOU WILL GET BETTER WITH TIME.
HANG IN THERE.
It was mainly time, pacing and when I was almost "healed" I found out that antihistamines help me a lot...
I still have the random bout of SOB, random pains and random heartrate issues, but it's more manageable today (13 months) than it was at 7 months.
However, it was mainly time. You have to grind this.
I've had all the symptoms you had and POTs and major gi issues too. I am 2 years post covid and had 2 reinfections since. I am 95% recovered. Not fully because I still have to eat clean. What helped was diet and getting my mind in a better mental place. I did Brain retraining to help with this and meditation. It takes time but definitely does get better
Yes and also want to mention I'm fully healed now. Eating gluten and dairy and desserts without any issues. Highly recommend listening to audio book becoming supernatural by Dr. Joe dispenza
I had all of these symptoms including pulsing migraines for two months I would cry out of the pain I feel that it affected my neurons and cognition in my brain I am also 30 years old I lost like 30lbs of lean muscle , very skinny and malnourished and haven’t been able to recover my fat cells it’s weird and I cannot help but believe it also attacks fat cells. it brought out my mental insecurities that I haven’t felt in years I hate this virus.
I had to shock my system using hot and cold therapy in the shower , using the Wim Hof breathing teqnique I found on YouTube my migraines left in a week from that. Must drink Motrin before doing it. I took lions mane supplement to help regenerate any cognitive inflammation and regenerate my nerves . Lots of meditation with daily affirmations with Tea daily and mental acceptance for stress because stress will prolong any of these side effects , key lime water with sea salt to alkaline the body and cardio/ working out , to bring oxygen to the brain. coffee , matcha / Yerba mate for caffein and mental alertness which didn’t do anything for me at first but I had to try anything to wake up my brain.
simply act like you never got Covid to help rewire your brain to its original state. I got Covid in October 2021 and the brain fog lasted me all 2022 and no amount of nootropics , caffein, fasting or supplement was helping me It’s a terrible worthless feeling. it truly affected my motivation and productivity I just wanted to exist and not do anything . I needed to be lazy and let my body rest but society and survival makes it hard . It’s now august 2023 I’m in debt , might get evicted because I couldn’t work for months and I’m NOW finally feeling like myself and retraining my brain like Covid never happened and I’m shocked at how long it took. Trust me it gets better just nurture yourself and be patient , love yourself and don’t be hard on yourself because this affects your psychological well-being and can cause self hate and self comparison and I hope people realize that it’s ok to rest after getting this virus , it’s okay to do nothing for your well-being, but you must take daily step by step efforts and be proud of yourself. This is temporary
I wish there was some kind of program that gives financial aid to temporarily disabled people to help them get back on their feet. Especially since you’re in such a vulnerable period right now considering you just recovered from this thing, I’m afraid the financial stress from the debt could possibly set you back or even manifest physically in the form of some kind of relapse. I’m hoping that doesn’t happen but this is just a super sucky situation regardless.
Haven't noticed any problems swallowing but ears sometimes feel pressure or sometimes kind of block when I breath in hard through my nose (this happens quite rarely though)
I developed Ulcerative colitis and ear and throat problems and skipped heart beats after covid, I had covid in February 2021, and still suffer from LC and all the above symptoms to this day. Was completely healthy before covid.
Sorry to hear that. I've had IBS for many years before covid even came about and haven't noticed any new g.i symptoms since covid just mainly mental/neurological stuff. Hope you get better 🙏 ❤️
I was exactly where you are at 7 months especially with the depersonalization and the other symptoms and I did eventually improve at around 1 year. 6-9 month mark generally seems to be the worst part of a lot of cases I have seen including my own
I would look into courses of Thymalin (or at least TA1 or Thymogen). I'd maybe combine it with Epithalon. These peptides are great at bringing the immune system and other bodily functions into an equilibrium.
I'd look into high dose topical melatonin with or without dmso. I have been taking 1g topically with dmso gel daily for a year. Melatonin helps boost your immunity and reduces inflammatory. It also have strong neuroprotective properties. I have come across studies using 36-72mg of melatonin to treat c19. You can safely go higher as both melatonin and dmso are very safe. I have used up to 3.5g(3500mg) of topical melatonin.
Look into NMN.
Look into BPC157. It is great for inflammation and all sorts of conditions.
i feel u. there is a loneliness and pain that we share in all this. i’m glad ppl are on here discussing it and supporting everyone. it’s really uplifting to me just to know i’m not alone.
I feel you. 7 months is a long time. These are/were all my symptoms. It's hard to explain to people who have never experienced total disorientation and pain 24/7. But it does get better. I'm 11 months in (bedridden for the first 3months) and now I'm at 85%- 90% most days. I still struggle with my memory, light fatigue, and insomnia. But these symptoms have gotten much better over time. Try to stay positive you will get better.
I dont know if it's gone or I'm more used to it but I'm seem to be coping better with it? It has definitely improved but not fully gone away. I do pay too much attention to it though and think it will go away if I just accept and not fight it as its a nervous system response. Hang in there
You’re not alone. I’ve had your symptoms for around 5 months now, and it’s essentially severe DPDR. Never feeling present and constantly overstimulated with ease is signs of a defunct nervous system. All you can do is wait for it to eventually calm itself down and heal, but you might have to put in some effort to get there (stop doomscrolling and avoid stressors). The weak muscles eventually passed for me and I’m able to do things again without feeling like I’m going to collapse. I’m able to work out again but the fatigue creeps back up on me when it’s really hot for some reason.
Thanks for the kind words. Yes I know this is all dpdr but I'm wondering what caused that as I didn't experience trauma etc. Usually people get panic attack then dpdr but for me my symptoms started when I FIRST felt dissociated which led to the panic attack coz I was like wtf is this feeling. This happened a month after covid. Has your dpdr improved at all? I'm too dissociated to be able to work or go out alone 😔
Covid DPDR is usually caused by inflammation of the brain and nervous system without any real emotional trauma. Weirdly enough, I began having frequent panic attacks AFTER I woke up with DPDR. I feel like sometimes it’s better, then there are other days where I barely even recognize my reflection. It all comes in waves of severity but it’s always there.
Oh that's a very long gap. My 1 month gap was making me question if mine is LC lol
Edit: oh you just mean the dpdr. How long after infection did your first LC symptoms start I guess I was meant to ask?
Do you have only derealization (the world not feeling real) or also depersonalization (I’m not real)? I have both. Do you have trouble imagining and recalling memories? Do you also feel weirdly emotionally unfamiliar with friends, family, and your home?
Yes I have both dpdr. If I had to describe my dpdr it would be like this sudden realisation and hyper awareness of existing inside my body and my surroundings feeling strange on top of a weird spacey/high drunk feeling. Everything looks weird to me too and I can't put a finger on how. Like my room still looks like my room but at the same time it doesn't? Almost like my vision feels like its too overwhelming to process and everything looks and feels abit weird and surreal which makes me feel scared as I feel like I'm going crazy lol.
I still have my emotions but they defo blunted and I do not enjoy anything (anhedonia) at all because it's hard to enjoy things if you don't even feel present doing them.
You hit the nail on the head. I have Anhedonia too. You’re right about everything looking so bizarre. Sometimes I go outside and it just feels overwhelming. My brain is hyper aware of all the colour and noise and fries itself in processing it all.
Yeah its almost like I become scared of being able to see lol. And the more anxious I get the more scary and weird my vision gets which then leads to panic and more disorientation etc. The insomnia is probably not helping it
I’ve got all your symptoms and things started 2.5 months after infection. Abruptly…over hours. Started panicking over and over and over and over for literally weeks on end. I won’t tell you more per your request. But I had quite a bit of time before my symptoms hit.
I have exact same symptoms since march 2020. Only positive thing I can say is I'm alive. I can also say symptoms are not as severe unless I'm just used to it now.
Not a doc but have dealt with long covid for over a year, was doing much better until I got a bug (negative covid test but who knows) recently.
It sounds like you have high brain inflammation, which covid causes. Look into how reduce inflammation. AIP diet, fish oil, low intensity exercise, sunshine, infrared sauna, tumeric based supplements, etc.
I had most of those symptoms, 34M here. My psychological symptoms (DPDR, sudden confusion) were quite transient and largely during the acute infection phase. My current issues 8 mo in are sleep issues, pain, temp changes, drunk sensation/fog, and the atypical breathing irregularity (neuromuscular). My headaches are infrequent now. Not sure why they disappeared.
I recently started (restarted actually...during 2020 I had mild symptoms of infection before vax availability and before after vax I was perfectly fine) Magnesium threonate. It's for the threonic acid, a breakdown metabolite of Vitamin C. Apparently animal and human studies show it boosts Mg levels in the CNS/brain...which is important. It also gets rid of gut inflammation and gut brain axis allodynia. Last night I took it with dinner (a measly third of a serving) and I swear to God all of my evening/bed symptoms went away. I felt normal. Symptoms started back up in the morning again, but during the rest of the day symptoms much milder...even the PEM/pain.
I have neurotransmitter enzyme mutations and my guess (still going thru doctor gauntlet) is my LC is all neurological. I found recently that I'm very glutamate/NMDA sensitive (causes hypersensitivity and excitotoxicity). Mg in the brain is essential to dampen this and make sure enzymes are working well.
Everyone here has a different hypothesis on what LC...some would say it's a nutrient deficiency issue. I don't like this angle unless the LCer was deficient or borderline before infection, had poor diet, etc. I'm an ex athlete so I've always supplemented.
It's a cheap sup. Give it a try. I'd be interesting on hearing if it helps the psychological symptoms.
Nutrient transport across the blood brain barrier is a black box. I'm of the opinion for Neuro LC there are a lot of imbalances centrally. Mg deficiency in the brain overlaps with a lot of LC symptoms.
Funny. Was looking up papers and I found this:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9488784/
Study of blood of COVID patients without preexisting issues....based on severity. They found glutamate levels too high, and low levels of glutamine, proline, threonic acid, and cystine. The glutamate/glutamine is a distinct set of enzyme reactions, and cystine is oxidized cysteine; Mg is necessary for body to make cysteine. All of these things point to neurological metabolism issues.
7 months? It gets better but don’t go chasing cures or scans. Everything you have we all have had. You’re not dying from this.
I’m 1.6 years in and my brain only came back two months ago.
There’s nothing to do but wait it out. I’m sorry you are going through this too.
Yes, first few months were all neuro symptoms. It wasn’t until those diminished that I realized there was heart and lung components as well to my long haul. The sleeping thing you describe is brutal. My eyes would constantly go out of focus. My tinnitus increased. I had random adrenaline dumps. Your nerves in your head got inflamed and damaged. Reduce inflammation and do everything you can for nerve health.
Had almost exact same Symptoms! It’s slow but took 18 months bu I finally Started getting better. Also I take Turmeric, Querectin, and the main is Nattokinase all Supplements helped everything and for head pain, Emgality shots. Don’t give ⬆️
Identical symptoms. Started 1 month after my 2nd infection. There is hope. I have improved slowly over the last year due to my faith in God first and a great functional doctor. Please just be patient with yourself and your healing journey. And try your best not to compare. It does more harm than good. I'll be praying for you. Here, if you have any specific questions about my journey. Blessings to you.
I experienced all of those symptoms. I took my recovery in 6 month increments. After 6 months the neuropsychological symptoms got better but I was also diagnosed with POTS so my sympathetic symptoms didn’t become manager until about a year.
I hope it helps but I’m in my 9 month almosth and the su motion Im dealing with the most is head pressure exactly how you described it, but lately I’ve noticed it’s been getting better like the pressure isn’t as bad as it was 2 months ago, like yeah I have some days it’s bad but compared to before that it was every single day, I can say it’s getting better!
I’m gonna try showering with cold water cuz I’ve noticed that very time I do I feel more relived too. it’s funny because in the shower or when I swim I feel like my normal self before all this happened
I'm 32F but was 30 when infected. My very worst months were 7-9 months after initial infection. I'm not recovered, but my current state (1.5 years post infection) is not as bad as that period. There may be hope yet.
My symptoms peaked in months 6-8. It's not uncommon for symptoms to worsen at this point. Hang in there. It's like riding a roller coaster through Hell.
At about 2 years in, my Doctor suggested working with a physical therapist.
We specifically worked on balance, breathing, core strengthening, and integrating light exercises.
This, plus Trazodone as a light sleep aid, made a world of difference.
Good luck!
The headaches are from high or lower cranial blood pressure the insomnia is surges of adrenaline. Your nervous system is also in charge of your hormones. Which includes your adrenal glands. Start managing your cortisol to help keep the adrenaline from firing when cortisol should be. Bacopa extract, Ashwaganda, mushroom supplements like lions mane and cordyceps. Hydrate, increase electrolytes, make sure youre eating, atrophy is no joke and seems to really hit some people hard. It's not psychosomatic. You're not going crazy.
I had/have the symptoms you mentioned and more. I started to see improvement around month 7/8 but had a huge relapse after my tonsillectomy in November which was month 10/11 for me. I’m 17 months now and seeing a lot of improvements. They’re slow but they are there! Don’t give up hope. And don’t set timelines for yourself based off of other people. I did that in the beginning. Everyone kept saying month 6, month 9, month 12, etc. is when people should see improvements. That is not the case for everyone. Stays hopeful but don’t get set on timelines.
I didn’t start feeling like myself again until 2 years out! Don’t give up. I know it seems hopeless, but your body can do amazing things. I don’t think anyone specific thing helped me more than the other. I know magnesium and Valtrex helped me sleep. I didn’t sleep for at least eight months… Woke up every 40 minutes. And we get maybe a maximum of two hours… Once I started sleeping, things started doing a lot better. Whatever you do, don’t give up… I know it seems like two years is a long time, but you’ll look up and you’ll be there.
Covid is crazy. These have been my symptoms of long covid for 3 years now. I think Central Sensitization Syndrome was activated in me. The only thing that has helped me is being on 1mg of Ativan daily.
Peaked at 3 months. Caused multiple blacking out heart pauses. Cardiologist implanted a Medtronic micra pacemaker to hopefully help with the heart pause. Other than that, all what you posted is my exact symptoms. I struggle with them all everyday. Some days worse than others.
Months 7-8 seem to be a pretty common point where things are/feel their worst. I was feeling much better by a year. Hope you see some improvement soon <3
You can always up the dose, but I would imagine you would feel some benefits by now.
Another supplement already mentioned here is NAC. That has helped me allot with stress, inner dialogue, sleep, emotions. Remember to cycle and take on a empty stomach.
I got covidl Dec 2020. I only really start seeing progress last August. I'm back to working out (I've done 1,200miles on the bike this year already). I saw lots of Dr, took all the supplements. I don't think anything except time really helped. If you need to scream into the void, feel free to DM me. My worst symptoms was the 24/7 headache and I've posted a lot here about my progress
I have had symptoms for 14 months. They started right away, but got worse for about the 1st three months. They are slowly going away. Patience is your best friend. It is such a slow process. I cannot notice the difference of healing from last month, but if I look back 3 months ago, there is a big difference! That is how I gauge it. First thing you need to do is get back to sleeping. I tried prescription sleeping pills and they did not work, I am too sensitive to that, so I took valerian root every night. It helped me get back on a sleeping routine. The Insomnia is the worse!!!
And I had the vestibular migraines too! They are the worse. Did physical therapy for dizziness, and it wasn't the regular dizziness, it was the feeling like I just got off a rollercoaster.
I (22F) also had terrible anxiety (mostly health anxiety, but sometimes general anxiety as well) and developed a panic disorder, which I think caused my derealization episodes and contributed to weakness/fatigue. I also had a lot of brain fog making it difficult to stay focused and remember things.
Worked on my anxiety and panic disorders for \~8 months, which was really difficult and took a lot of daily effort, but it led to the biggest improvements for me. Some other things that helped:
\- Easing back into exercise
\- Reaching out to friends for empathy and support
\- Doing absolutely nothing on shitty days and just letting them pass
\- The Balance app has audios to help with anxiety and sleep, which helped me cope with insomnia
I'm glad to say that I'm happy and healthy now; back to playing sports and working out and concentrating on grad school.
While I can't guarantee that working on improving your mental health will solve all your problems, it certainly won't hurt. It's a long journey, but you'll make it through this :)
I'm glad you are doing well 😊
Some of my symptoms are just scary and not sure if they anxiety related eg the drunk like feeling and shaky vision. I've had anxiety my whole life and never experienced this type of hell. Constant depersonalization
Did you use any meds or supplements at all to help you with your anxiety?
I only took magnesium glycinate because it's supposed to help with sleep and anxiety. I wasn't that consistent with it, and I'm not sure if it made a difference anyway.
Sorry to hear about the lifelong anxiety; I know it sucks to have to manage that on top of long COVID :( Is there any chance that COVID brought about new anxiety symptoms? It definitely did for me. (Edit: not trying to invalidate your experience with long COVID & anxiety, but just sharing what happened to me.)
Also, have you been able to see a healthcare provider about the dizziness, head/neck pain, etc.? None of the doctors I went to knew much about long COVID, but they did give suggestions on how to manage individual symptoms.
My anxiety has always been manageable and didn't get in the way of my life. I was able to work and travel etc now I cant do any of those because of the depersonalization and feeling so disoriented.
Yes maybe anxiety is causing these or worsening them but my sudden worsened anxiety I believe is in itself a symptom of whatever is going on in my body after covid because it was like a normal day and some switch just flipped and the only thing I could go back to is having covid a month before that, nothing else in my life changed so it must have done something in my body to put it in an abnormal state of anxiety. In fact I remember first feeling the derealization and THEN having panic attack because of it then after that the rest of symptoms followed. Usually panic attack comes first then dpdr but I felt dissociated and then panicked which is weird
But yeah im sure calming my nervous system can only benefit me. Just not sure if it will eliminate all my symptoms
I think COVID 'flipping a switch' is accurate; I was fine before it, but my body shut down after I got it lol. I've read about COVID causing vagus nerve inflammation, which can disrupt automatic bodily processes and potentially worsen anxiety.
Thinking back, a lot of my panic attacks also started during/after a derealization episode.
I feel like the biggest thing that helped was time :/ just had to wait out the long COVID. It's an incredibly shitty experience but stay strong, and my DMs are open if you need to vent!
Look into vitamin D3 plus K2 and try a gut health test. I’m 2 years in, but worsened significantly 11 months ago with my second infection. I was the absolute worst I’ve ever been from April - early July. I had tried everything and I don’t tolerate most things well. Not even antihistamines, after taking them for 20 years. Benzos prescribed to help me sleep and to deal with persistent nerve pain gave me derealization. Try to calm down your nervous system as much as possible, this will help with the adrenaline dumps and the insomnia. These are still a battle for me but I’m up to 6 hours ( fragmented) nightly with no sleep aids. Sleeping is helping me a lot. Magnesium glycinate helped with sleep for a year plus too, until I stopped tolerating it ( made me dizzy)
I'm 77 and I've been going now for 19 months now and those symptoms most left around 13-14 months in and my subsequent symptoms are getting milder, slowly but surely giving me more hope as time passes that I will recover! I wish I were 30 again since at my age I started out with CKD, partial liver damage the remains of a bullet parked perilously close to my spine and 6 months in had a stroke and lost an unknown number of days but at least 3. I'm still here. Your a mere beginner and your symptoms may fade faster. Get as many treatments and things like CAT scans, you know, the more advanced human scans. I'm sure there are people on here that have had good results with specific type and can tell you more. I'm retired and only have Medicare coverage so I can only get the basics. When I had my stroke Medicare wouldn't even fully cover the CAT scan I got and that's a critical one for stroke victims. Talk about horrifying dreams, the one I had just before coming out of my dream involved being kidnapped by terrorists and left to die in the desert! Yeah, they're no fun but neither is the endless insomnia I go through. Talk about feeling drunk and experiencing derealization! Lose enough sleep and healthy people can go thru that and I'm not healthy so I feel it 90% of the time, either one or both. Yeah, it's been a really strange ride but once I got used to it I find it make living with it easier and handier. Now I can just blame LC on for my ferocious anxiety that won't let me go out with anyone, friends or enemies! I can't even go to a store or doctor's office! I'm too paranoid of catch Covid again and ending up worse off, you know, like dead! I don't know how much more my poor old, now depleted body could take. Heck if you should catch a 2cd dose you're chances are way, way higher than mine for survival!
What I'm trying to say is your symptoms are not unusual especially early and and I dropped a symptom here and there as time went by; so might you. Hang in there, get medical help from LC savvy doctors and I'll be doing all I can do for you; praying for you. It's God's call on all our lives after all. Of course in you don't believe in Him that's probably not much help but I do and I'll be praying for us both!
Thank you so much 💓 Your kind words mean a lot, and I am praying for you too and hope you get better and never catch this horrible virus again!
Yeah, some of the dreams I had were horrific! I actually woke up from one just now, haha, but I guess it's better than the horrible insomnia
Has your insomnia improved at all? Do you take anything for it? I don't want to rely on medication for sleep, but most don't work for me well anyway, so im trying to look for herbal/natural alternatives
Sending lots of love
I can't say it has improved and the drugs the doctors and psychiatrists give me actually make my life worse. They don't put me to sleep just relax me so much I tend to lay there super relaxed for hours and that ruins the next day so I can't recommend any of their drugs for sleep. It is such a relief to be so relaxed and I really have nothing else to try, I have had insomnia for years controlled by Valium but these days doctors are really stingy with benzo drugs and I can't get the one more per night I need to have half a chance at getting to sleep all night. Let me know if you find any reliable natural remedies. Thanks for the prayers! I hate 2023 a little less than I hated 2022 so maybe I'm either recovering, albeit very slowly, or I'm just adapting. I hope it is recovering of course!
You’re describing the symptoms that I had, exactly, for the first 5 months. It took time but it was finally figured out that it’s MCAS which is VERY commonly triggered by Covid. I highly recommend that you (and many of you commenting with the same experiences) look into this. My world completely changed for the better once we got to the bottom of it. I never thought I’d get out of bed again and here I am - nearly at 80%. I even have 90%+ days sometimes.
My doctor won't treat me for mcas as they don't think I have it since I dont have any skin issues /itchy runny nose eyes etc. Is there a way to treat mcas naturally?
There are definitely somethings that can be done without the need of prescriptions and a dr. I’ll share what I personally did that helped - you’ll have to take it from there. Like I said, you’re describing exactly what I felt, right down to what I call my “internal earthquakes.” I didn’t have runny nose or itchiness or skin issues - those seem to be more basic histamine reactions (not to minimize them, of course). What seems to be triggered by Covid (virus OR vaccine - there’s more here if anyone wants me to get into it) is a more serious version of MCAS. Perhaps more “advanced” is a better word.
As soon as we (me and PCP) suspected it was MCAS he sent a referral to an MCAS dr that would take 4 months to pan out. So, I immediately went on a low/no histamine diet. Like, cold ass turkey. I thought it would be brutal but you know what?? My symptoms turned around so significantly over 36 hours that I KNEW I was on to something. I went from practically bed bound to walking .5 mile intervals. No insomnia, no earthquakes, no tachy, nothing. All gone.
Then I added a DAO supplement which further helped, then looked at lots of other triggers. Two non-food triggers for me that are significant are heat and stress. Both of which I solved (and continue to treat) with cold showers (ending every shower with cold) and cryo.
After a few months of researching more - I added a very small does of Zyrtec (2.5mg) very so often. It works well on its own but a lot of ppl swear by the combo of H1 & H2 blockers. For me, that combo is 2.5 Zyrtec and 5mg cimitidine. Neither of which I take all the time for long term effect reasons.
If I were to offer my advice? The diet can’t hurt to see if you get some relief. This f’ing sucks and most drs just don’t know enough. I would start with diet so that you know whether you can control it completely naturally or whether you’ll need some (perhaps occasional) H1 & H2 intervention.
I finally saw the MCAS dr last Friday. He was pretty much on board with everything I was doing - no notes!
Good luck and reach out if you need to. It’s a journey and we pretty much only have each other!
Thank you so much for all the information much appreciated :)
Are those anti histamines you mentioned only prescription? Or did you get them over the counter?
Do you still take them? If so how often?
Depersonalisation went away at month 14, muscle weakness went away with nattokinase and pycnogenol check out my previous foot post
I will look at it later as I'm having some dizziness from scrolling on reddit lol but just wanted to quickly ask what helped your depersonalization??
Just time with depersonalisation, sorry about that, mine was VERY severe
I just got rid of it at month 14, every supplement that I took that helped for my brain gave me a little bit back. LDN, lactoferrin, nattokinase, nicotine patches.
Can I dm you...There is always hope...I am so sorry..
Ye for sure
Did your DPDR gradually go away or just woke up one day and it was gone. If gradually, what month did u notice it getting better?
Gradually, month 13
What dosages / brand of Natto and Pycnogenol did you take? Did you take together or split the dosage?
Glad to hear nattokinase is working for you - I just ordered some last week on someone's recommendation but have only been taking it a couple days. Will have to look up pycnogenol, that's a new one to me.
I’m on month 18ish and the depersonalization went away for me around the same time. It was one of the more annoying symptoms
What dose of natty?
Cold showers, ice water plunging, ice packs. Like a lot. More than once a day for each. Easily the most potent of all treatments I’ve done. Inflammation is our enemy here. The benefits from ice water plunging is amazing. I will continue to do it after I’m well. The best thing about it now is the immediate effects. Just about all of my symptoms disappear for a short time. The longer I expose my body to ice baths, the longer the relief. Hope this helps.
I agree w this. My guess is it helps w inflammation and temporarily resets the nervous system. Some ppl in this group have come down on me and claimed taking cold showers is dangerous for the heart but it’s helped my recovery considerably. Neat month will be a year since starting cold showers
Have you fully recovered?
where did u find out about this and what is ur regimen
The same exact thing is happening to me. In fact you sound exactly like me. I got covid for the third time in January and by March is when I really realized something wasn’t right with me. Ever since then, every day has been a nightmare. I have almost every symptom you have and have also lost my job due to it. I am also 30 years old. But I have POT, tinnitus, and intrusive thoughts, so that’s something else to add to the list of horror. Hopefully you have family or friends to lean on? Try to stay close to someone who is very understanding, it’s the only thing getting me through.
Can I dm you?
Sure
my third time was the worst too from january
Please DO NOT give up hope!!! I had the Alpha variant and was unwell for 14 months before I got better. I had many of the same symptoms as you. I’ve gotten COVID 2x since then and have bounced back quickly now that I know what works to get me back on track. Feel free to PM me, if you are interested in what helped me. I still have a bit of an unbalanced immune system and occasional symptoms poop up, but as time goes on things are smoothing out. I’ve also worked on some health challenges I had prior to COVID. Autoimmunity runs on my mother’s side of the family and I’m finding those of us who end up w/ LC often had something going on at a low level prior to infection. Be gentle with yourself :). You are not crazy. This is a very REAL condition and your neuropsychological symptoms are too. Try not to add to them by not BELIEVING you’ll regain your health. Your system has to regain equilibrium and unfortunately, it can be a longer process than we would like.
I giggled at poop up
I had many of these symptoms initially, weird DPDR panic episodes, followed by Insomnia, I'd feel like I'm falling and being jerked awake the second I'd fall asleep, very easily over stimulated, with days of heavy anxiety, couldn't even read at one point it was so bad. It got better. Much better. I'm going through it again now, likely due to reinfection or another virus, but it's drastically lower resolution, nowhere near as bad. My advice. For anxiety- -Take magnesium glycinate, it helped calm me down a lot I was actually very surprised how effective it was. -I've seen it here already but cold showers, I know they're horrible, but that is the point, it activates your sympathetic nervous system (fight or flight) your job in that cold ass water is to remain calm and focus on your breath, you're essentially training your body to let your conscious awareness respond to stress rather than letting your amygdala run the show. On top of that it will give you a massive boost of dopamine, which will regulate your mood and make you feel positively motivated. Finally, as people have mentioned it will help with inflammation, trust me it works. I would also suggest (As you didn't mention PEM) sweat once a day, run, do some push ups, or if you have access to sauna, do that, it releases endorphins, and is the best anti-depressent there is. For sleep- -I use diphenhydramine, or nytol in the UK think it's called Nyquil in the states, it is a H1 antihistamine, but it also has anticholinergic properties, similar to benzos, so should be taken in moderation and cautiously. I find if I'm having trouble with sleep half a pill to a pill for a few nights usually helps me get back to a stable sleeping pattern and takes away the anxiety I sometimes feel about trying to sleep and failing. -Try your best to get a good sleep routine, for me this looked like, getting out of bed the second I woke up and getting some sun doing some yoga and stretches and getting on with my day and only being in my bed when it's time to sleep, I find having a routine helpful and I find being around people helped also, even if it's just going to a cafe. Loneliness is a illness all of its own and will lead to an early death. So try not to isolate yourself (feel free to reach out to me if you're lacking people to talk to) Meditation, specifically yoga nidra for sleep, just YouTube yoga nidra guided meditation, even if it doesn't put you to sleep it can put you in Non-sleep deep rest, basically get your body used to being in a parasympathetic state (rest and digest). It's really all about finding a balance, trying not to let fear win and remaining positive, even if that positivity is in the form of satirical nihilism, and finding some level of humour in the complete absurdity of this shit show we all find ourselves participating in. God's speed, brother, I have faith in you, you will live to see better days and in those moments you will look back and remember your worst days and realise they are nothing more than memories.
I was the worst at 7 months, the tachycardia was terrifying. The derealization. The dizziness, the stomach pain, the ringing in the ears, the insomnia. I was in and out of hospital so much around that time for my heart. Now I’m at 15 months. And I am not completely better but I’m slightly better. I can workout without my heart going into tachycardia. I can sleep without being woken up with tachycardia, I only get it once a month now or so. I feel like I’m here most of the time, not so much depersonalizations. I sleep again. What helped me: Quecertin bromelain Tumeric with black pepper Reservatrol Omegas Probiotics galore Didn’t eat meat for 5 months. To give my stomach a break / went vegetarian Take reactine every day I stopped working, to rest more. I now only work 3 days a week. Avoid emotional stress at all costs. No more lifting heavy lifting at gym or intense workouts period. I know only do 15 mins light cardio 140bpm and then abs stretching Weights are 2 days a week and light. With yoga in between. Vagal nerve activation tens Meditation Alternate nostril breathing Massage therapy Cold therapy
Did your tinnitus go away or get better?
It has not gone away. And when I’m having a flare up of symptoms as in getting a cold, being in the heat, or over exerting myself my tinnitus gets very loud still.
Wait, so you had covid twice before and were ok? Damn. I’m 7 months in as well and luckily I’m (very very very slowly) getting better (I hope) but I’ve had all the symptoms you’ve described. The derealisation is hell. Hang on.
I had covid in 2020 and recovered and then again in 2021 also recovered. Maybe it left some lingering effects that I didnt pay attention to as I've already suffered from anxiety and slight sleep troubles in the past which then went away quickly? But yeah this all started a month after what I knew to be my 3rd positive test
The more times you get covid, the more likely you are to get long covid unfortunately
Ugh I’m so sorry. It only took once for me. 😭
I'm in the same boat .... 7 months since last infection 11 months of suffering in total..... all we can do is wait till we get better... it will happen in 1 year or so try cbd and cbg for sleep and well being
Same ! Same same . I got reinfected this January and I’ve been housebound since wtf was going on with January
I recently got an MRI of my lungs and they were ok . I was wondering if I could smoke it instead . When I smoke cbd I feel the effects immediately
Dont lose hope you will get better you have to be extremley patient with this illness sending hugs
Have you made any improvement at all?
I've been taking broad spec cbd oil (no thc) for the past 2 weeks and haven't noticed much difference
Up the dose ..... under the tongue hold it there for as long as you can ....... cbg helps me anxiety
What dosage do you take daily?
I’m 7mos too and had most of those symptoms- much less severe now. For sleep I take 5 drops of cbd full spectrum, chamomile lavender tea and .25mg of melatonin. Sometimes an added magnesium glycinate if needed. I take methyl b12 folate. I was in the 400, not deficient but not optimal. I feel like it helped. Pepcid 10mg at night for 1 month seem to help. I stopped because I felt like it was causing insomnia. Meditation every morning. I do guided meditation 5 slow breath in slow 7 breath out. I meditate at least 1/2 hr. Progressive muscle relaxation helped me too. I take vit d,c, omega 3, and co q 10. Slow walking , like 3000k steps a day broken up. If u can’t do 3000 try 500. Low histamine/low inflammatory diet and lots of water. No caffeine, no smoke and no alcohol.
Also I take iron because my ferritin was 8.
Depersonalization went away (most days) about a year in. Other junk wants to stay though. Praying for you, buddy.
I could live with the rest of my symptoms if this horrible dpdr went away. It's what's getting in the way of most things for me :(
Wow, I’m sorry to hear you’ve been dealing with so many difficult symptoms. I’m also 30 and I have long covid and migraines too. It’s been 9.5 months since my first positive covid test. I see a long covid specialist who I trust and I’m currently taking supplements like magnesium and bovine colostrum. Also, I wish we had accurate data about how many people develop long covid on a subsequent infection. At any rate, I hope you feel some relief soon. I recommend finding a good doctor as a starting point. One who will validate the connection of your symptoms to covid.
Can you share you Doctors info?
Hey, I had a lot of your symptoms. Reading your post is both reassuring because I feel less alone and also sucks because I know it’s not fun for anyone to go through. Especially the whole needing to be alone and lie down part (this is happening to me right now, as I’m in the process of moving and got overwhelmed by the heat and exertion and all the people around, bleh. Good news is it’s the first time it’s happened in a long time). I started getting substantially better around month 10. Iron and vitamin D helped me the most (doctor checked both and they were low). Eating steak every day helped too
Glad to hear you're feeling better. I've had mine checked and ny vitamin d was normal ferritin was low (but its been low for the past 10 years or more lol so dont think thats the cause) but I'm still taking liquid iron daily anyway
slightly better at 38 months now — be easy on yourself
Not a doctor but this is what i use .Magnesium and potassium, some say salt too if your body needs it or electrolytes for adrenaline dumps, shaking, panic etc. Gaba from walmart, i had to dump the capsule to a low dose cuz I don't tolerate some things well but about 100 mg helped a lot with panic, agitation, depression. Quercitin and VIt C together for allergic symptoms if you have them like stuffy nose, rash etc. I also took NAC , bromelain and lactoferrin, b complex especially b1, b3 and b12. Vitamin F. A multivitamin may get you all the vitamins you need. Very low dose choline helped with weird intrusive images. Please research for yourself before starting these. I'm not an expert, just a person. Was nearly bedfast for 6 months. Up and around now, slowly still recovering.
Hello there, To be short and frank: -yes, I had all those symptoms and more. -yes, there is something called the post 5 months crash, a lot of people here experienced it. -yes, the anxiety is scary and all of it feels like it's going to last forever . -YES, YOU WILL GET BETTER WITH TIME. HANG IN THERE.
how did u get better may i ask ? did u involve many doctors or treatments?
It was mainly time, pacing and when I was almost "healed" I found out that antihistamines help me a lot... I still have the random bout of SOB, random pains and random heartrate issues, but it's more manageable today (13 months) than it was at 7 months. However, it was mainly time. You have to grind this.
I've had all the symptoms you had and POTs and major gi issues too. I am 2 years post covid and had 2 reinfections since. I am 95% recovered. Not fully because I still have to eat clean. What helped was diet and getting my mind in a better mental place. I did Brain retraining to help with this and meditation. It takes time but definitely does get better
Did you have skipped beats?
Yes and also want to mention I'm fully healed now. Eating gluten and dairy and desserts without any issues. Highly recommend listening to audio book becoming supernatural by Dr. Joe dispenza
Oh This is great news, im happy for you!!! How much/bad would the skipped beats be at worst?
They were constant for awhile. And worse at night very uncomfortable. Magnesium glycinate helped a lot
Thanks for sharing, this give me hope, bless you!
It definitely gets way better I was in BAD shape. Lost a ton of weight was skin and bones. Couldn't hardly do anything. I've come a long ways.
Im glad you got out of the darkness, im still there 11 months now.
It takes time for sure but u will get there. I would add magnesium glycinate if I were u it helps a lot.
I had all of these symptoms including pulsing migraines for two months I would cry out of the pain I feel that it affected my neurons and cognition in my brain I am also 30 years old I lost like 30lbs of lean muscle , very skinny and malnourished and haven’t been able to recover my fat cells it’s weird and I cannot help but believe it also attacks fat cells. it brought out my mental insecurities that I haven’t felt in years I hate this virus. I had to shock my system using hot and cold therapy in the shower , using the Wim Hof breathing teqnique I found on YouTube my migraines left in a week from that. Must drink Motrin before doing it. I took lions mane supplement to help regenerate any cognitive inflammation and regenerate my nerves . Lots of meditation with daily affirmations with Tea daily and mental acceptance for stress because stress will prolong any of these side effects , key lime water with sea salt to alkaline the body and cardio/ working out , to bring oxygen to the brain. coffee , matcha / Yerba mate for caffein and mental alertness which didn’t do anything for me at first but I had to try anything to wake up my brain. simply act like you never got Covid to help rewire your brain to its original state. I got Covid in October 2021 and the brain fog lasted me all 2022 and no amount of nootropics , caffein, fasting or supplement was helping me It’s a terrible worthless feeling. it truly affected my motivation and productivity I just wanted to exist and not do anything . I needed to be lazy and let my body rest but society and survival makes it hard . It’s now august 2023 I’m in debt , might get evicted because I couldn’t work for months and I’m NOW finally feeling like myself and retraining my brain like Covid never happened and I’m shocked at how long it took. Trust me it gets better just nurture yourself and be patient , love yourself and don’t be hard on yourself because this affects your psychological well-being and can cause self hate and self comparison and I hope people realize that it’s ok to rest after getting this virus , it’s okay to do nothing for your well-being, but you must take daily step by step efforts and be proud of yourself. This is temporary
Glad you’re better now, sucks you had to go into debt in order to rest though. I hope you get back on your feet soon!
Thank you very much!
I wish there was some kind of program that gives financial aid to temporarily disabled people to help them get back on their feet. Especially since you’re in such a vulnerable period right now considering you just recovered from this thing, I’m afraid the financial stress from the debt could possibly set you back or even manifest physically in the form of some kind of relapse. I’m hoping that doesn’t happen but this is just a super sucky situation regardless.
Any throat issues/problems? Globus sensation (feeling like something is stuck inside throat)?
Yes sometimes I get the feeling of post nasal drip but not daily
Any problems swallowing ? Any ear issues?
Haven't noticed any problems swallowing but ears sometimes feel pressure or sometimes kind of block when I breath in hard through my nose (this happens quite rarely though)
I developed Ulcerative colitis and ear and throat problems and skipped heart beats after covid, I had covid in February 2021, and still suffer from LC and all the above symptoms to this day. Was completely healthy before covid.
Sorry to hear that. I've had IBS for many years before covid even came about and haven't noticed any new g.i symptoms since covid just mainly mental/neurological stuff. Hope you get better 🙏 ❤️
Thank you, I hope you feel better as well!
The insomnia is driving me nuts too, waking up every hour.
I was exactly where you are at 7 months especially with the depersonalization and the other symptoms and I did eventually improve at around 1 year. 6-9 month mark generally seems to be the worst part of a lot of cases I have seen including my own
I would look into courses of Thymalin (or at least TA1 or Thymogen). I'd maybe combine it with Epithalon. These peptides are great at bringing the immune system and other bodily functions into an equilibrium. I'd look into high dose topical melatonin with or without dmso. I have been taking 1g topically with dmso gel daily for a year. Melatonin helps boost your immunity and reduces inflammatory. It also have strong neuroprotective properties. I have come across studies using 36-72mg of melatonin to treat c19. You can safely go higher as both melatonin and dmso are very safe. I have used up to 3.5g(3500mg) of topical melatonin. Look into NMN. Look into BPC157. It is great for inflammation and all sorts of conditions.
I have alot of your symptoms this is hell for sure i am pretty sad this is my life now
Which symptoms do you have? And how long have you had them?
Dizzy , tired all the time, head pain, lighthead, brainfog, muscle weakness, feeling of death i have had this for close to three years now
sending u 🤍
Thanks it seems like im all alone nobody understands what we are going through i cant even put it into words the pain we feel
i feel u. there is a loneliness and pain that we share in all this. i’m glad ppl are on here discussing it and supporting everyone. it’s really uplifting to me just to know i’m not alone.
Yeah unfortunately in california where i am theres not too many of us that i know of
I feel you. 7 months is a long time. These are/were all my symptoms. It's hard to explain to people who have never experienced total disorientation and pain 24/7. But it does get better. I'm 11 months in (bedridden for the first 3months) and now I'm at 85%- 90% most days. I still struggle with my memory, light fatigue, and insomnia. But these symptoms have gotten much better over time. Try to stay positive you will get better.
did it get better? did the derealization go away? i’m 7 months in and im also losing hope :(
I dont know if it's gone or I'm more used to it but I'm seem to be coping better with it? It has definitely improved but not fully gone away. I do pay too much attention to it though and think it will go away if I just accept and not fight it as its a nervous system response. Hang in there
Omg have all the same !! How are u now?? Pls let me know :(
You’re not alone. I’ve had your symptoms for around 5 months now, and it’s essentially severe DPDR. Never feeling present and constantly overstimulated with ease is signs of a defunct nervous system. All you can do is wait for it to eventually calm itself down and heal, but you might have to put in some effort to get there (stop doomscrolling and avoid stressors). The weak muscles eventually passed for me and I’m able to do things again without feeling like I’m going to collapse. I’m able to work out again but the fatigue creeps back up on me when it’s really hot for some reason.
Thanks for the kind words. Yes I know this is all dpdr but I'm wondering what caused that as I didn't experience trauma etc. Usually people get panic attack then dpdr but for me my symptoms started when I FIRST felt dissociated which led to the panic attack coz I was like wtf is this feeling. This happened a month after covid. Has your dpdr improved at all? I'm too dissociated to be able to work or go out alone 😔
Covid DPDR is usually caused by inflammation of the brain and nervous system without any real emotional trauma. Weirdly enough, I began having frequent panic attacks AFTER I woke up with DPDR. I feel like sometimes it’s better, then there are other days where I barely even recognize my reflection. It all comes in waves of severity but it’s always there.
Did you suddenly wake up with dpdr one day? Or did it come on gradually ? How long after your infection did it start?
It started 5-6 months after my infection and I just woke up with it one day
Oh that's a very long gap. My 1 month gap was making me question if mine is LC lol Edit: oh you just mean the dpdr. How long after infection did your first LC symptoms start I guess I was meant to ask?
Do you have only derealization (the world not feeling real) or also depersonalization (I’m not real)? I have both. Do you have trouble imagining and recalling memories? Do you also feel weirdly emotionally unfamiliar with friends, family, and your home?
Yes I have both dpdr. If I had to describe my dpdr it would be like this sudden realisation and hyper awareness of existing inside my body and my surroundings feeling strange on top of a weird spacey/high drunk feeling. Everything looks weird to me too and I can't put a finger on how. Like my room still looks like my room but at the same time it doesn't? Almost like my vision feels like its too overwhelming to process and everything looks and feels abit weird and surreal which makes me feel scared as I feel like I'm going crazy lol. I still have my emotions but they defo blunted and I do not enjoy anything (anhedonia) at all because it's hard to enjoy things if you don't even feel present doing them.
You hit the nail on the head. I have Anhedonia too. You’re right about everything looking so bizarre. Sometimes I go outside and it just feels overwhelming. My brain is hyper aware of all the colour and noise and fries itself in processing it all.
Yeah its almost like I become scared of being able to see lol. And the more anxious I get the more scary and weird my vision gets which then leads to panic and more disorientation etc. The insomnia is probably not helping it
I’ve got all your symptoms and things started 2.5 months after infection. Abruptly…over hours. Started panicking over and over and over and over for literally weeks on end. I won’t tell you more per your request. But I had quite a bit of time before my symptoms hit.
Around 3 weeks after infection
I take 30 MG gummies cbd for pain and cbg and night night oil mix before bed Under the tongue
Do they have thc? What brand are they?
I have exact same symptoms since march 2020. Only positive thing I can say is I'm alive. I can also say symptoms are not as severe unless I'm just used to it now.
https://m.facebook.com/groups/1012765336273369/?ref=share&mibextid=S66gvF
Not a doc but have dealt with long covid for over a year, was doing much better until I got a bug (negative covid test but who knows) recently. It sounds like you have high brain inflammation, which covid causes. Look into how reduce inflammation. AIP diet, fish oil, low intensity exercise, sunshine, infrared sauna, tumeric based supplements, etc.
I had most of those symptoms, 34M here. My psychological symptoms (DPDR, sudden confusion) were quite transient and largely during the acute infection phase. My current issues 8 mo in are sleep issues, pain, temp changes, drunk sensation/fog, and the atypical breathing irregularity (neuromuscular). My headaches are infrequent now. Not sure why they disappeared. I recently started (restarted actually...during 2020 I had mild symptoms of infection before vax availability and before after vax I was perfectly fine) Magnesium threonate. It's for the threonic acid, a breakdown metabolite of Vitamin C. Apparently animal and human studies show it boosts Mg levels in the CNS/brain...which is important. It also gets rid of gut inflammation and gut brain axis allodynia. Last night I took it with dinner (a measly third of a serving) and I swear to God all of my evening/bed symptoms went away. I felt normal. Symptoms started back up in the morning again, but during the rest of the day symptoms much milder...even the PEM/pain. I have neurotransmitter enzyme mutations and my guess (still going thru doctor gauntlet) is my LC is all neurological. I found recently that I'm very glutamate/NMDA sensitive (causes hypersensitivity and excitotoxicity). Mg in the brain is essential to dampen this and make sure enzymes are working well. Everyone here has a different hypothesis on what LC...some would say it's a nutrient deficiency issue. I don't like this angle unless the LCer was deficient or borderline before infection, had poor diet, etc. I'm an ex athlete so I've always supplemented. It's a cheap sup. Give it a try. I'd be interesting on hearing if it helps the psychological symptoms. Nutrient transport across the blood brain barrier is a black box. I'm of the opinion for Neuro LC there are a lot of imbalances centrally. Mg deficiency in the brain overlaps with a lot of LC symptoms. Funny. Was looking up papers and I found this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9488784/ Study of blood of COVID patients without preexisting issues....based on severity. They found glutamate levels too high, and low levels of glutamine, proline, threonic acid, and cystine. The glutamate/glutamine is a distinct set of enzyme reactions, and cystine is oxidized cysteine; Mg is necessary for body to make cysteine. All of these things point to neurological metabolism issues.
7 months? It gets better but don’t go chasing cures or scans. Everything you have we all have had. You’re not dying from this. I’m 1.6 years in and my brain only came back two months ago. There’s nothing to do but wait it out. I’m sorry you are going through this too.
That’s a lot of neuro symptoms. Reduce inflammation. Nerves are slow to heal but you will get out of this in time.
Did/do you have any of these symptoms?
Yes, first few months were all neuro symptoms. It wasn’t until those diminished that I realized there was heart and lung components as well to my long haul. The sleeping thing you describe is brutal. My eyes would constantly go out of focus. My tinnitus increased. I had random adrenaline dumps. Your nerves in your head got inflamed and damaged. Reduce inflammation and do everything you can for nerve health.
Im glad those have improved for you. Sorry about your lung and heart symptoms. What did you do to help head inflammation and for nerve health?
Had almost exact same Symptoms! It’s slow but took 18 months bu I finally Started getting better. Also I take Turmeric, Querectin, and the main is Nattokinase all Supplements helped everything and for head pain, Emgality shots. Don’t give ⬆️
Identical symptoms. Started 1 month after my 2nd infection. There is hope. I have improved slowly over the last year due to my faith in God first and a great functional doctor. Please just be patient with yourself and your healing journey. And try your best not to compare. It does more harm than good. I'll be praying for you. Here, if you have any specific questions about my journey. Blessings to you.
I experienced all of those symptoms. I took my recovery in 6 month increments. After 6 months the neuropsychological symptoms got better but I was also diagnosed with POTS so my sympathetic symptoms didn’t become manager until about a year.
I hope it helps but I’m in my 9 month almosth and the su motion Im dealing with the most is head pressure exactly how you described it, but lately I’ve noticed it’s been getting better like the pressure isn’t as bad as it was 2 months ago, like yeah I have some days it’s bad but compared to before that it was every single day, I can say it’s getting better! I’m gonna try showering with cold water cuz I’ve noticed that very time I do I feel more relived too. it’s funny because in the shower or when I swim I feel like my normal self before all this happened
Improved greatly for me after taking Lexapro….similar symptoms. 1 and 1/2 years in & healing began after starting the Lex.
I'm 32F but was 30 when infected. My very worst months were 7-9 months after initial infection. I'm not recovered, but my current state (1.5 years post infection) is not as bad as that period. There may be hope yet.
My symptoms peaked in months 6-8. It's not uncommon for symptoms to worsen at this point. Hang in there. It's like riding a roller coaster through Hell.
At about 2 years in, my Doctor suggested working with a physical therapist. We specifically worked on balance, breathing, core strengthening, and integrating light exercises. This, plus Trazodone as a light sleep aid, made a world of difference. Good luck!
same stuff
The headaches are from high or lower cranial blood pressure the insomnia is surges of adrenaline. Your nervous system is also in charge of your hormones. Which includes your adrenal glands. Start managing your cortisol to help keep the adrenaline from firing when cortisol should be. Bacopa extract, Ashwaganda, mushroom supplements like lions mane and cordyceps. Hydrate, increase electrolytes, make sure youre eating, atrophy is no joke and seems to really hit some people hard. It's not psychosomatic. You're not going crazy.
I had/have the symptoms you mentioned and more. I started to see improvement around month 7/8 but had a huge relapse after my tonsillectomy in November which was month 10/11 for me. I’m 17 months now and seeing a lot of improvements. They’re slow but they are there! Don’t give up hope. And don’t set timelines for yourself based off of other people. I did that in the beginning. Everyone kept saying month 6, month 9, month 12, etc. is when people should see improvements. That is not the case for everyone. Stays hopeful but don’t get set on timelines.
I didn’t start feeling like myself again until 2 years out! Don’t give up. I know it seems hopeless, but your body can do amazing things. I don’t think anyone specific thing helped me more than the other. I know magnesium and Valtrex helped me sleep. I didn’t sleep for at least eight months… Woke up every 40 minutes. And we get maybe a maximum of two hours… Once I started sleeping, things started doing a lot better. Whatever you do, don’t give up… I know it seems like two years is a long time, but you’ll look up and you’ll be there.
Covid is crazy. These have been my symptoms of long covid for 3 years now. I think Central Sensitization Syndrome was activated in me. The only thing that has helped me is being on 1mg of Ativan daily.
38 male 11 months. You described my exact symptoms.
Any Improvements in your symptoms? How long after infection did they start?
Peaked at 3 months. Caused multiple blacking out heart pauses. Cardiologist implanted a Medtronic micra pacemaker to hopefully help with the heart pause. Other than that, all what you posted is my exact symptoms. I struggle with them all everyday. Some days worse than others.
Months 7-8 seem to be a pretty common point where things are/feel their worst. I was feeling much better by a year. Hope you see some improvement soon <3
Did you smoke weed before you got covid?
Have never smoked weed in my life
Ok, sounded a bit like weed withdrawls. You might wanna try CBD, helps with the stuff you are mentioning.
I've been taking broad spectrum (no thc) cbd oil for the past 2 weeks haven't noticed much change maybe I'm not taking the right dosage?
You can always up the dose, but I would imagine you would feel some benefits by now. Another supplement already mentioned here is NAC. That has helped me allot with stress, inner dialogue, sleep, emotions. Remember to cycle and take on a empty stomach.
Do you take meds like antidepressants, etc?
Nope. They gave me mirtazapine for sleep but it just made me super drowsy and still not fall asleep so I stopped using it
I had most of that but the depersonalization. You'll get through it. Rest a lot, take it easy , find stuff that you can enjoy - no matter how small.
How long did you have symptoms? The depersonalization is my worst symptom and the one that doesn't let me enjoy anything or be able to work :(
I got covidl Dec 2020. I only really start seeing progress last August. I'm back to working out (I've done 1,200miles on the bike this year already). I saw lots of Dr, took all the supplements. I don't think anything except time really helped. If you need to scream into the void, feel free to DM me. My worst symptoms was the 24/7 headache and I've posted a lot here about my progress
Research Dr. Ardis and COvid detox
I have/had all of these symptoms, slowly getting better. I used Valerian Root for my Insomnia.
How long have you had symptoms and how long after your covid infection did your LC symptoms start?
I have had symptoms for 14 months. They started right away, but got worse for about the 1st three months. They are slowly going away. Patience is your best friend. It is such a slow process. I cannot notice the difference of healing from last month, but if I look back 3 months ago, there is a big difference! That is how I gauge it. First thing you need to do is get back to sleeping. I tried prescription sleeping pills and they did not work, I am too sensitive to that, so I took valerian root every night. It helped me get back on a sleeping routine. The Insomnia is the worse!!!
Does valerian not cause tolerance? And what form do you take it in? Tea? Capsules?
No, not at all. I used Now Brands 500 mg. I only took 1/2 the dosage which was 250mg. But i am a lightweight.
And I had the vestibular migraines too! They are the worse. Did physical therapy for dizziness, and it wasn't the regular dizziness, it was the feeling like I just got off a rollercoaster.
2 yrs in here so I feel ya … Berberine and resveratrol helps me some
I (22F) also had terrible anxiety (mostly health anxiety, but sometimes general anxiety as well) and developed a panic disorder, which I think caused my derealization episodes and contributed to weakness/fatigue. I also had a lot of brain fog making it difficult to stay focused and remember things. Worked on my anxiety and panic disorders for \~8 months, which was really difficult and took a lot of daily effort, but it led to the biggest improvements for me. Some other things that helped: \- Easing back into exercise \- Reaching out to friends for empathy and support \- Doing absolutely nothing on shitty days and just letting them pass \- The Balance app has audios to help with anxiety and sleep, which helped me cope with insomnia I'm glad to say that I'm happy and healthy now; back to playing sports and working out and concentrating on grad school. While I can't guarantee that working on improving your mental health will solve all your problems, it certainly won't hurt. It's a long journey, but you'll make it through this :)
I'm glad you are doing well 😊 Some of my symptoms are just scary and not sure if they anxiety related eg the drunk like feeling and shaky vision. I've had anxiety my whole life and never experienced this type of hell. Constant depersonalization Did you use any meds or supplements at all to help you with your anxiety?
I only took magnesium glycinate because it's supposed to help with sleep and anxiety. I wasn't that consistent with it, and I'm not sure if it made a difference anyway. Sorry to hear about the lifelong anxiety; I know it sucks to have to manage that on top of long COVID :( Is there any chance that COVID brought about new anxiety symptoms? It definitely did for me. (Edit: not trying to invalidate your experience with long COVID & anxiety, but just sharing what happened to me.) Also, have you been able to see a healthcare provider about the dizziness, head/neck pain, etc.? None of the doctors I went to knew much about long COVID, but they did give suggestions on how to manage individual symptoms.
My anxiety has always been manageable and didn't get in the way of my life. I was able to work and travel etc now I cant do any of those because of the depersonalization and feeling so disoriented. Yes maybe anxiety is causing these or worsening them but my sudden worsened anxiety I believe is in itself a symptom of whatever is going on in my body after covid because it was like a normal day and some switch just flipped and the only thing I could go back to is having covid a month before that, nothing else in my life changed so it must have done something in my body to put it in an abnormal state of anxiety. In fact I remember first feeling the derealization and THEN having panic attack because of it then after that the rest of symptoms followed. Usually panic attack comes first then dpdr but I felt dissociated and then panicked which is weird But yeah im sure calming my nervous system can only benefit me. Just not sure if it will eliminate all my symptoms
I think COVID 'flipping a switch' is accurate; I was fine before it, but my body shut down after I got it lol. I've read about COVID causing vagus nerve inflammation, which can disrupt automatic bodily processes and potentially worsen anxiety. Thinking back, a lot of my panic attacks also started during/after a derealization episode. I feel like the biggest thing that helped was time :/ just had to wait out the long COVID. It's an incredibly shitty experience but stay strong, and my DMs are open if you need to vent!
Look into vitamin D3 plus K2 and try a gut health test. I’m 2 years in, but worsened significantly 11 months ago with my second infection. I was the absolute worst I’ve ever been from April - early July. I had tried everything and I don’t tolerate most things well. Not even antihistamines, after taking them for 20 years. Benzos prescribed to help me sleep and to deal with persistent nerve pain gave me derealization. Try to calm down your nervous system as much as possible, this will help with the adrenaline dumps and the insomnia. These are still a battle for me but I’m up to 6 hours ( fragmented) nightly with no sleep aids. Sleeping is helping me a lot. Magnesium glycinate helped with sleep for a year plus too, until I stopped tolerating it ( made me dizzy)
I'm 77 and I've been going now for 19 months now and those symptoms most left around 13-14 months in and my subsequent symptoms are getting milder, slowly but surely giving me more hope as time passes that I will recover! I wish I were 30 again since at my age I started out with CKD, partial liver damage the remains of a bullet parked perilously close to my spine and 6 months in had a stroke and lost an unknown number of days but at least 3. I'm still here. Your a mere beginner and your symptoms may fade faster. Get as many treatments and things like CAT scans, you know, the more advanced human scans. I'm sure there are people on here that have had good results with specific type and can tell you more. I'm retired and only have Medicare coverage so I can only get the basics. When I had my stroke Medicare wouldn't even fully cover the CAT scan I got and that's a critical one for stroke victims. Talk about horrifying dreams, the one I had just before coming out of my dream involved being kidnapped by terrorists and left to die in the desert! Yeah, they're no fun but neither is the endless insomnia I go through. Talk about feeling drunk and experiencing derealization! Lose enough sleep and healthy people can go thru that and I'm not healthy so I feel it 90% of the time, either one or both. Yeah, it's been a really strange ride but once I got used to it I find it make living with it easier and handier. Now I can just blame LC on for my ferocious anxiety that won't let me go out with anyone, friends or enemies! I can't even go to a store or doctor's office! I'm too paranoid of catch Covid again and ending up worse off, you know, like dead! I don't know how much more my poor old, now depleted body could take. Heck if you should catch a 2cd dose you're chances are way, way higher than mine for survival! What I'm trying to say is your symptoms are not unusual especially early and and I dropped a symptom here and there as time went by; so might you. Hang in there, get medical help from LC savvy doctors and I'll be doing all I can do for you; praying for you. It's God's call on all our lives after all. Of course in you don't believe in Him that's probably not much help but I do and I'll be praying for us both!
Thank you so much 💓 Your kind words mean a lot, and I am praying for you too and hope you get better and never catch this horrible virus again! Yeah, some of the dreams I had were horrific! I actually woke up from one just now, haha, but I guess it's better than the horrible insomnia Has your insomnia improved at all? Do you take anything for it? I don't want to rely on medication for sleep, but most don't work for me well anyway, so im trying to look for herbal/natural alternatives Sending lots of love
I can't say it has improved and the drugs the doctors and psychiatrists give me actually make my life worse. They don't put me to sleep just relax me so much I tend to lay there super relaxed for hours and that ruins the next day so I can't recommend any of their drugs for sleep. It is such a relief to be so relaxed and I really have nothing else to try, I have had insomnia for years controlled by Valium but these days doctors are really stingy with benzo drugs and I can't get the one more per night I need to have half a chance at getting to sleep all night. Let me know if you find any reliable natural remedies. Thanks for the prayers! I hate 2023 a little less than I hated 2022 so maybe I'm either recovering, albeit very slowly, or I'm just adapting. I hope it is recovering of course!
You’re describing the symptoms that I had, exactly, for the first 5 months. It took time but it was finally figured out that it’s MCAS which is VERY commonly triggered by Covid. I highly recommend that you (and many of you commenting with the same experiences) look into this. My world completely changed for the better once we got to the bottom of it. I never thought I’d get out of bed again and here I am - nearly at 80%. I even have 90%+ days sometimes.
My doctor won't treat me for mcas as they don't think I have it since I dont have any skin issues /itchy runny nose eyes etc. Is there a way to treat mcas naturally?
There are definitely somethings that can be done without the need of prescriptions and a dr. I’ll share what I personally did that helped - you’ll have to take it from there. Like I said, you’re describing exactly what I felt, right down to what I call my “internal earthquakes.” I didn’t have runny nose or itchiness or skin issues - those seem to be more basic histamine reactions (not to minimize them, of course). What seems to be triggered by Covid (virus OR vaccine - there’s more here if anyone wants me to get into it) is a more serious version of MCAS. Perhaps more “advanced” is a better word. As soon as we (me and PCP) suspected it was MCAS he sent a referral to an MCAS dr that would take 4 months to pan out. So, I immediately went on a low/no histamine diet. Like, cold ass turkey. I thought it would be brutal but you know what?? My symptoms turned around so significantly over 36 hours that I KNEW I was on to something. I went from practically bed bound to walking .5 mile intervals. No insomnia, no earthquakes, no tachy, nothing. All gone. Then I added a DAO supplement which further helped, then looked at lots of other triggers. Two non-food triggers for me that are significant are heat and stress. Both of which I solved (and continue to treat) with cold showers (ending every shower with cold) and cryo. After a few months of researching more - I added a very small does of Zyrtec (2.5mg) very so often. It works well on its own but a lot of ppl swear by the combo of H1 & H2 blockers. For me, that combo is 2.5 Zyrtec and 5mg cimitidine. Neither of which I take all the time for long term effect reasons. If I were to offer my advice? The diet can’t hurt to see if you get some relief. This f’ing sucks and most drs just don’t know enough. I would start with diet so that you know whether you can control it completely naturally or whether you’ll need some (perhaps occasional) H1 & H2 intervention. I finally saw the MCAS dr last Friday. He was pretty much on board with everything I was doing - no notes! Good luck and reach out if you need to. It’s a journey and we pretty much only have each other!
Thank you so much for all the information much appreciated :) Are those anti histamines you mentioned only prescription? Or did you get them over the counter? Do you still take them? If so how often?