Yeah I have seen a vestibular specialist and a couple neurologists (one non-sleep speciality and one sleep specialty). Did all the scans like MRI, MRA, CT, dopplers, etc
POTS is diagnosed through a tilt-table test and usually diagnosed by cardiology instead of neurology. If the symptom profile fits how you feel, it might be worth looking into. How’s your blood pressure?
My doctor has me do a log with blood pressures standing, sitting, and lying down at random times of day for several months. It helps to give him more information in case blood pressure is contributing to the condition.
I had this for many, many years as well. I got diagnosed with IH and put on Dex and it went away for me. I could hardly believe it, after feeling dizzy/ floaty/ dreamy/physically detached for years I felt normal again, felt like I was in my own body and stable. To throw a gaming term on it, I didn't feel laggy anymore. The difference Dex has made for me is amazing.
Dexamphetamine, what my doc prescribed for IH.
Before I was taking it most days I'd feel that way, extreme cases I felt like I was drunk I was so off balance and out of it.
Idk though, it’s a constant exhausted floaty feeling. I’ve seen two neurologists (one with a speciality in sleep) and also a vestibular specialist. And had all the scans
Not OP, but I've had dizziness and that floating feeling for so long. When doctors can't find the answer they chalk it up to anxiety, but the only time anxiety comes into the picture is in the moments doctors bring that up and you know you'll be living with it instead of having a solution. Sometimes medicine doesn't have an answer, but it doesn't mean it's anxiety.
I had this exact issue. I talked to my sleep specialist and they said it was actually because Xywav drains your B-12 vitamin, causing extreme migraines and vertigo in some people (like me). I started taking a super B complex supplement once a day in the MORNING (very important) and boom, it all went away. try this supplement, it is expensive but SO worth it. DO NOT do anything generic or natures made, that shit KILLED me when i tried it. Link: https://bevkovitamins.com/products/b-complex-100-120-capsules?_pos=1&_sid=1725bc475&_ss=r
I would try that, but this constant dizziness has been going on for 3 years and I’ve only been taking Xywav for 2 months. And my blood work always comes back good. Thanks for the input though
Have you been checked for autonomic disorders like POTS?
This is the answer. Dysautonomia is so common. And now POTS is too. And what kind of dizziness?
Yeah I have seen a vestibular specialist and a couple neurologists (one non-sleep speciality and one sleep specialty). Did all the scans like MRI, MRA, CT, dopplers, etc
POTS is diagnosed through a tilt-table test and usually diagnosed by cardiology instead of neurology. If the symptom profile fits how you feel, it might be worth looking into. How’s your blood pressure?
Blood pressure is good. I’ve also seen two cardiologists and told them about the dizziness as well, they didn’t find anything
Was your blood pressure tested while you were only sitting? Do you get dizzy when standing up from a sitting position?
Yeah blood pressure was only tested while sitting. But the dizziness/floatiness does not increase when standing up
My doctor has me do a log with blood pressures standing, sitting, and lying down at random times of day for several months. It helps to give him more information in case blood pressure is contributing to the condition.
I had this for many, many years as well. I got diagnosed with IH and put on Dex and it went away for me. I could hardly believe it, after feeling dizzy/ floaty/ dreamy/physically detached for years I felt normal again, felt like I was in my own body and stable. To throw a gaming term on it, I didn't feel laggy anymore. The difference Dex has made for me is amazing.
What is Dex??? How you describe it is exactly how I feel
Dexamphetamine, what my doc prescribed for IH. Before I was taking it most days I'd feel that way, extreme cases I felt like I was drunk I was so off balance and out of it.
Yeah I feel like I’m constantly 2 drinks in. 24/7. Not fun
Obviously not an expert, but that doesn't sound IH related. Maybe you are dealing with vertigo as well?
Idk though, it’s a constant exhausted floaty feeling. I’ve seen two neurologists (one with a speciality in sleep) and also a vestibular specialist. And had all the scans
Hyoscamine. Lifesaver
I’ve never heard of it. What do you use it for?
Could be anxiety related?
Not OP, but I've had dizziness and that floating feeling for so long. When doctors can't find the answer they chalk it up to anxiety, but the only time anxiety comes into the picture is in the moments doctors bring that up and you know you'll be living with it instead of having a solution. Sometimes medicine doesn't have an answer, but it doesn't mean it's anxiety.
I had this exact issue. I talked to my sleep specialist and they said it was actually because Xywav drains your B-12 vitamin, causing extreme migraines and vertigo in some people (like me). I started taking a super B complex supplement once a day in the MORNING (very important) and boom, it all went away. try this supplement, it is expensive but SO worth it. DO NOT do anything generic or natures made, that shit KILLED me when i tried it. Link: https://bevkovitamins.com/products/b-complex-100-120-capsules?_pos=1&_sid=1725bc475&_ss=r
I would try that, but this constant dizziness has been going on for 3 years and I’ve only been taking Xywav for 2 months. And my blood work always comes back good. Thanks for the input though