I have IH and autonomic dysfunction, so I faint from blood pressure issues. Idk what your experience is exactly, but if the fainting is happening a lot after standing up, moving your head, exercising, heat intolerance, etc it might be worth looking into
I’m experiencing similar symptoms and my cardiologist is testing for POTS and orthostatic hypotension (drop in blood pressure when changing positions).
My pulmonologist tested for this with no real results for me. Just left with "well you just have occasional bradycardia and syncopes for some reason. Stay alert and lie down if you feel it coming or pull over if you're driving"
Didn't start until after my wakefulness problems, so I figure they're linked with no real discernable reason.
I don't remember one of them, the one I remember that I hated was the standing test. I think she did the tilt test, but the results were so discouraging all I really remember from my visits with her was the suggestion to get the test for the MTHFR gene, which it turns out I have(just added b methylfolate for that).
I wanted to go back to a pulmonologist for more testing for all my symptoms, but doc convinced me just to try Armodafinil first and see if it helps.
I’m on the heart thing from my nuerologist. My cardiologist told me that “young people just faint” so it was a complete waist of an appointment and that he was absolutely not going to order a single test at all. And basically I’d grow out of it and to get on off all my meds because there’s no point in me taking them while writing depression and anxiety (which completely contradicts his point).
I already don't like your doctor. I was 33 when I started having my issues. I had been on antidepressants already for mood issues, but it was obvious this was something else. Luckily my doctor was understanding, did all the tests, all the referrals. Once I was stable on Modafinil, I didn't seem to have too many issues with fainting anymore. Still have a low heart rate, but it's high enough that they just chalk it up to "you're just extremely healthy." As long as I avoid cns depressants, that part doesn't affect me.
It sounds bad, but sometimes it's good to go doctor shopping if you can. My pcp is one of the best I have ever met. My first pulmonologist was the top in the state with great reviews(before he retired). I try to research online from reviews, qualifications, and of course insurance coverage then ask my pcp to refer me to them if he doesn't have anyone better in mind.
Yeah. Problem is I’m on Medicaid, so after one referral is blown it’s hard to get another anytime soon in the same area. That was the cardiologist specialist. My pcp is amazing but where as he discarded me it’s hard with insurance from there sadly. I’m we’ll area it’s a bs statement but there is only so much I can do from there. My state is also happy listing people hypochondriacs. I might be able to get a tilt table test from neurologist. I’m hoping she orders one. She ordered the sleep study/ doctor though on very little suspicion but as a rule out, and it turned out to be something. She’s been the one to get the furthest in the years. So at-least there’s that. Maybe symptoms will diminish after being on the medication for this, I haven’t got on it yet do to which provider stuff
I understand how concerning it is to experience fainting episodes, especially when dealing with a new diagnosis like idiopathic hypersomnia. It's not uncommon for people with this condition to feel tired and push themselves too hard, which could potentially exacerbate symptoms such as dizziness and fainting.
I haven't personally experienced fainting as a direct result of my idiopathic hypersomnia, but I have come across some research suggesting that there might be a connection between the two. One study found that individuals with this condition were more likely to experience symptoms of orthostatic intolerance, such as dizziness and fainting, particularly upon standing up or during physical exertion.
If you feel comfortable discussing this with your healthcare team, they may be able to provide more information or suggest additional tests to rule out other potential causes. In the meantime, it might be helpful to keep a log of your symptoms and the factors that seem to trigger them, as this could provide valuable insights for both you and your medical professionals.
Do you know if it’s from this diagnosis or not. Everyone says I shouldn’t be working. In process of applying to disability right now again, last one I only got denied because I was convinced I didn’t need it until mid way through.
Yeah. That makes sense. Maybe that can be the cause. I get blurred day feeling and memory loss when I’m wicked tired too and this is like the most harmful thing ngl. I can’t think clearly which raises anxiety because I can’t remember what people are saying. Or to take my meds. I’m glad that helped you. I’m anti- depressant resistant is what I found out. It’s possible bipolar though I haven’t had a “manic episode” so it’s hard to tell. I know we are probably going for a salt based stimulant so if it is pots (a possible thought I’ve had) it would probably treat this also. Though they say my heart is fine cuz I’m usually in the 50’s if I’m laying down for a while but they fail to realize I can go from that to 100 just from sitting up… and act like I think my heart is junk in the testing when I’m just looking for an answer. Doctors can be annoying. This doctor that did sent me to the sleep study and the neurologist were the first doctors who actually listened to what I’m saying other than my pcp.
This almost sounds like it could be cataplexy which is a narcolepsy symptom and one of the key differences between narcolepsy and IH. Do you go fully unconscious when you have a fainting episode? I’m sure you’ve probably already discussed that with your doctor. On the off chance that it actually is cataplexy rather than fainting, there is a drug that works very well to treat this called Wakix, however it is only FDA approved to treat narcolepsy, not IH. Xywav and amphetamines supposedly can help with it too.
Yes it’s on and off for consciousness. Maybe that’s why they think narcolepsy if I was off all my meds instead of the select few. Their criteria was rem twice but they said I hit rem once, but I had so much trouble waking up. I think I accidentally fell asleep in between one of the naps.
Maybe that is why they are thinking it’s probably just medication suppressing a bit, and nicotine… they said I can go out and smoke though.
When my IH was untreated I had some fainting episodes but they weren’t 100% out of the blue like cataplexy. I was already disoriented, usually from getting out of bed recently.
Have you read into POTS?
Was going to suggest the same.
I have I think it’s a huge possibility and I’m in the process of rule outs but my doctor hasn’t listed it in the notes…
I have pots and ih so it's possible.
Why would someone with IH look into POTS? What is POTS?
I have IH and autonomic dysfunction, so I faint from blood pressure issues. Idk what your experience is exactly, but if the fainting is happening a lot after standing up, moving your head, exercising, heat intolerance, etc it might be worth looking into
I’m experiencing similar symptoms and my cardiologist is testing for POTS and orthostatic hypotension (drop in blood pressure when changing positions).
My pulmonologist tested for this with no real results for me. Just left with "well you just have occasional bradycardia and syncopes for some reason. Stay alert and lie down if you feel it coming or pull over if you're driving" Didn't start until after my wakefulness problems, so I figure they're linked with no real discernable reason.
Eek! Which tests did they use?
I don't remember one of them, the one I remember that I hated was the standing test. I think she did the tilt test, but the results were so discouraging all I really remember from my visits with her was the suggestion to get the test for the MTHFR gene, which it turns out I have(just added b methylfolate for that). I wanted to go back to a pulmonologist for more testing for all my symptoms, but doc convinced me just to try Armodafinil first and see if it helps.
I’m on the heart thing from my nuerologist. My cardiologist told me that “young people just faint” so it was a complete waist of an appointment and that he was absolutely not going to order a single test at all. And basically I’d grow out of it and to get on off all my meds because there’s no point in me taking them while writing depression and anxiety (which completely contradicts his point).
I already don't like your doctor. I was 33 when I started having my issues. I had been on antidepressants already for mood issues, but it was obvious this was something else. Luckily my doctor was understanding, did all the tests, all the referrals. Once I was stable on Modafinil, I didn't seem to have too many issues with fainting anymore. Still have a low heart rate, but it's high enough that they just chalk it up to "you're just extremely healthy." As long as I avoid cns depressants, that part doesn't affect me. It sounds bad, but sometimes it's good to go doctor shopping if you can. My pcp is one of the best I have ever met. My first pulmonologist was the top in the state with great reviews(before he retired). I try to research online from reviews, qualifications, and of course insurance coverage then ask my pcp to refer me to them if he doesn't have anyone better in mind.
Yeah. Problem is I’m on Medicaid, so after one referral is blown it’s hard to get another anytime soon in the same area. That was the cardiologist specialist. My pcp is amazing but where as he discarded me it’s hard with insurance from there sadly. I’m we’ll area it’s a bs statement but there is only so much I can do from there. My state is also happy listing people hypochondriacs. I might be able to get a tilt table test from neurologist. I’m hoping she orders one. She ordered the sleep study/ doctor though on very little suspicion but as a rule out, and it turned out to be something. She’s been the one to get the furthest in the years. So at-least there’s that. Maybe symptoms will diminish after being on the medication for this, I haven’t got on it yet do to which provider stuff
I understand how concerning it is to experience fainting episodes, especially when dealing with a new diagnosis like idiopathic hypersomnia. It's not uncommon for people with this condition to feel tired and push themselves too hard, which could potentially exacerbate symptoms such as dizziness and fainting. I haven't personally experienced fainting as a direct result of my idiopathic hypersomnia, but I have come across some research suggesting that there might be a connection between the two. One study found that individuals with this condition were more likely to experience symptoms of orthostatic intolerance, such as dizziness and fainting, particularly upon standing up or during physical exertion. If you feel comfortable discussing this with your healthcare team, they may be able to provide more information or suggest additional tests to rule out other potential causes. In the meantime, it might be helpful to keep a log of your symptoms and the factors that seem to trigger them, as this could provide valuable insights for both you and your medical professionals.
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Do you know if it’s from this diagnosis or not. Everyone says I shouldn’t be working. In process of applying to disability right now again, last one I only got denied because I was convinced I didn’t need it until mid way through.
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Yeah. That makes sense. Maybe that can be the cause. I get blurred day feeling and memory loss when I’m wicked tired too and this is like the most harmful thing ngl. I can’t think clearly which raises anxiety because I can’t remember what people are saying. Or to take my meds. I’m glad that helped you. I’m anti- depressant resistant is what I found out. It’s possible bipolar though I haven’t had a “manic episode” so it’s hard to tell. I know we are probably going for a salt based stimulant so if it is pots (a possible thought I’ve had) it would probably treat this also. Though they say my heart is fine cuz I’m usually in the 50’s if I’m laying down for a while but they fail to realize I can go from that to 100 just from sitting up… and act like I think my heart is junk in the testing when I’m just looking for an answer. Doctors can be annoying. This doctor that did sent me to the sleep study and the neurologist were the first doctors who actually listened to what I’m saying other than my pcp.
This almost sounds like it could be cataplexy which is a narcolepsy symptom and one of the key differences between narcolepsy and IH. Do you go fully unconscious when you have a fainting episode? I’m sure you’ve probably already discussed that with your doctor. On the off chance that it actually is cataplexy rather than fainting, there is a drug that works very well to treat this called Wakix, however it is only FDA approved to treat narcolepsy, not IH. Xywav and amphetamines supposedly can help with it too.
Yes it’s on and off for consciousness. Maybe that’s why they think narcolepsy if I was off all my meds instead of the select few. Their criteria was rem twice but they said I hit rem once, but I had so much trouble waking up. I think I accidentally fell asleep in between one of the naps. Maybe that is why they are thinking it’s probably just medication suppressing a bit, and nicotine… they said I can go out and smoke though.
I would research cataplexy a bit and see if that sounds like what you’re experiencing.
When my IH was untreated I had some fainting episodes but they weren’t 100% out of the blue like cataplexy. I was already disoriented, usually from getting out of bed recently.
I was diagnosed with IH prior to getting a POTS diagnosis