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Switching from 2.5mg amlodipine which wasn’t doing anything. I did try 5mg amlodipine last year which also didn’t do anything but it did make me dizzy and lightheaded in the shower. I’m doing 120mg ER verapamil for now. Today was day 1! I have chronic constipation already so I got a Linzess prescription in anticipation of the famed verapamil constipation🙏 here is to hoping this works😭my other preventatives are Qulipta and Diamox, both of which really help me, but my attacks can still be bad in spite of these. Next up is lamotrigine if verapamil doesn’t help after a few months. I also take dalfampridine PRN for my ataxia.

I have failed: Effexor, Ajovy, memantine, spironolactone, amlodipine, timolol drops, eletriptan, rizatriptan

Hi everyone, I’m currently waiting for my genetic test to come back as we are pretty sure I have a CACNA1A mutation. I have symptoms of both FHM1 and EA2 (as does my affected family member) and my neuro is leaning towards EA2 even though I started out with a very aura-heavy phenotype and only developed the ataxia later on. My episodes have evolved throughout the years but currently I get painless HM attacks (dysphasic then left-sided motor aura, severe cognitive impairment, dizziness, motion intolerance, ataxia/dysarthria, hyperacusis) as well as pure ataxia/dysarthria episodes. I also have cerebellar signs (gaze evoked downbeating nystagmus). Currently on Qulipta and Diamox. I’m curious if anyone else tested positive for one of these mutations? I’m aware it’s sometimes difficult to tell the difference between EA2 and FHM1 since the symptoms can overlap a lot. Thanks!

I started Prozac for anxiety. Everyone and the internet told me it should not impact my HM or my ataxia. I did 5mg for 2 weeks and was fine. Then I upped to 10mg and things went out of control. I started feeling weird on day 2 and then I had a simultaneous HM and ataxia episode on days 3 and 4 of the 10mg. I was quite well controlled before this and this was my first HM episode in about 2 months. There were no other triggers I can identify. I’m going back to 5mg and probably tapering off now. Why would this possibly be happening? It’s just an SSRI and such a low dose too.

Note: I have tried venlafaxine which didn’t impact me at all neurologically (didn’t help or hurt) but I did have other side effects. So now I’m trying Prozac and it’s just not going well :/

Hi all, I hope it’s ok to post here. This is the only community I’ve found that has this much experience with long term Diamox use. I don’t have IIH but I take 250mg Diamox per day for a condition called episodic ataxia. I’ve been on it almost a year and I do use higher doses as needed (up to about 700mg per day). I tried going off at one point and my condition spiraled out of control. This will be a long term medicine for me. I don’t really have side effects now that I’m adjusted to the dose, which I’m grateful for, but I’m very worried about the kidney stone risk long term. I’ve heard the horror stories and I do my best to really hydrate and drink 1/2 cup lemon juice daily. Has anyone made it years on Diamox without a stone? Thanks in advance!

I started at 10mg and 2 nights in I was up until 5:30am wide awake. I mean I was working on my computer from 3-5am totally wide awake. I have another health condition that gets very bad when I don’t sleep like this. I can’t function. I went down to 5mg and I hope this helps. And yes I’m taking it in the morning shortly after waking up. I know it’s an adjustment period but I don’t think I can power thru this for a month :/

I’m taking 5mg for a week then going up to 10mg since I’m very medication sensitive. I’m taking it for OCD and anxiety. I was on 37.5mg Effexor before this for a neurological condition which did not work and just made me fall asleep all the time and have massive night sweats. I tapered down to 7.5mg Effexor and I just can’t get lower without horrible insomnia. I’m now starting Prozac not as a bridge but as something I hope to stay on to help with my OCD. I was diagnosed with OCD as a child and I’ve done a lot of CBT for it but I resisted meds until now (in my 20s). I do struggle with insomnia that I suspect is largely related to anxiety. The neurological condition I tried the Effexor for is having a huge impact on my life and making me go into a lot of anxiety/OCD spirals after years of failed meds and misdiagnoses and getting worse, so I finally bit the bullet and decided to do something about my anxiety. I don’t know if Prozac will be the right med for me but I reached the point where I need something. I’m on a buttload of other meds for my neuro condition and I really didn’t want to add more but here’s to hoping the Prozac helps!

Hi everyone, my neuro wants to start me on verapamil next. I also asked about lamotrigine since my attacks are painless and very aura-heavy but he said he prefers to start with verapamil. Anyone have success with verapamil? I previously failed amlodipine. Currently also taking Qulipta, Diamox, and Ampyra (for my ataxia). Thanks!

Hi all! I am most likely switching my care to the migraine clinic at UCSD or UCSF. I'm not totally certain which is the better choice but both the neurologists I inquired about could see me around July/August and it's all in-network so it basically comes down to the experience. Do any of you have experience at either of these clinics and might recommend one over the other? Thank you so much!

Hi all! I am most likely switching my care to the migraine clinic at UCSD or UCSF. I'm not totally certain which is the better choice but both the neurologists I inquired about could see me around July/August and it's all in-network so it basically comes down to the experience. Do any of you have experience at either of these clinics and might recommend one over the other? Thank you so much!

Hi! I'm curious if any of you have never actually had a headache (ever, with any of your attacks)? Like all the auras (sensory, dysphasic, brainstem, hemiparesis), but no actual headache ever? I'm not sure how atypical this for HM. Thanks!

Hi all, I'm currently seeing a neurogeneticist who specializes in genetic ataxias as it looks like I may have been misdiagnosed (or maybe under-diagnosed?). He said he feels it's likely I have some form of Episodic Ataxia but is not ruling out Familial Hemiplegic Migraine. I've been diagnosed with VM for almost 4 years with multiple "weird auras" (same for my parent) that have been worsening over the years, which eventually lead to me getting sent to the neurogeneticist. Now I'm second-guessing everything. I really, really thought this was VM the entire time. I'm now going to get repeat-expansion testing for SCA6 and SCA27b (which the doctor said is very likely to be negative thank God) and then I will get whole exome sequencing to test for Episodic Ataxia and Familial Hemiplegic Migraine. Currently feeling rather freaked out but also hopeful to get some concrete answers.