Scott, or anyone else taking Verapamil, what are your side effects and has it helped your dizziness? I was given Topamax by my neurologist but I'm a little leary about it. Thanks for any feedback!
I am on 180 MG's of Verapamil for about 15 Months. I am 100% Dizzy free for about 8 to 10 months. Diagnosed with MAV..I was on Zoloft as well for 2 years... I am off Zoloft now for a good 6 months.....I started having problems January 2004. Only side effects is urinary retention which really does not bither that much except maybe going to the bathroom a couple more times..No other problems and no guaratee the Medication is the cause.. All physical tests normal so the Urologist said probably medically induced but its really nothing...
Verapamil made me 100% after Zoloft got me to 90% to 95%
I dont come onmuch but I check back here and there to see how some old friends are doing....Busy enjoying the summer with my family.. 13 month old son
That is SO great Howie, and a true inspiration for us who are striving towards 100%! Thanks a lot for the info on Verapamil. So far I have heard really good things about it. The only side effect I heard of was a bit of constipation which is superb considering all of the other side effects the other meds can cause.
You are so lucky to have put this madness behind you - really happy for you. Howie, in your worst days did you used to wake in the mornings feeling pretty dreadful, like you didn't even feel like getting out of bed? Also, did you ever notice any effects from certain foods ratcheting up the symptoms? So, in other words, if you ate chocolate or cheese on a Monday, would you feel a lot worse on the Tuesday?
I'm currently in a bad way really. Nothing ever changes despite being on 15 mg of Cipramil. I wonder too if I am not only dealing with vestibular migraine but also side effects from Cipramil - namely a much greater sensitivity to pain and muscular inflammation.
I've tried Verapamil twice now and both times I felt a whole lot worse on it almost immediately. It caused increased agitation and an upset stomach and of course more dizziness. Have also tried propranolol twice and it too made me feel freaky. It may be that prop will do the job if I tough it out for a week but with work commitments hanging around I can't afford any down time.
What a drag all of this is. I'd gladly hand over my entire life's savings for a cure right now.
Sorry about your side effects... I felt like that in the mornings but way in the begining before a diagnosis when my anxiety and depression where at all time highs..None of that when on Zoloft or Verapamil..
Never figured out food triggers and I journaled and tried to figure that out. My doctor said everyone is different. I drink several cups of coffee every day even late at night and no problems, and sleep is fine but some one else will feel horrible. Because MAV is very grey and not a black and white diagnosis its more of a trial and error.
as far as the Verapamil your body might be sensitive and a lot of medications need time for your body to adjust and get used to .....Like many SSRI's bad before better. Try some Valium during the initial stage or there are a lot of MAV drugs. Adam may help you with that...I lucked out on the st drug....
Hang in there your getting close you have a diagnosisis now you need to find the treatment that works for you
did you have the dizziness or weird shaky/wavy vision? if so, how long did it last, or i should ask, how long before you were diagnosed?? dr. gave me neurontin for what he suspects is MAV, but we're still doing tests and won't get back MRI and EEG til tuesday probably now. my b-12 is on the low end too, so i think it may cause similar symptoms.
please let me know...it just blows my mind that feeling dizzy and having weird vision CONSTANTLY 24/7 is from migraines. wondering if that is similar to you....
thank you and glad you are doing well!!!!!
I had 24/7 Dizziness and Blurred vision to varying degrees of intensity. I went 18 months before a diagnosis. I started taking Zoloft for anxiety and that helped tremendously with a few months. I dd not have wavy vision or spots but constant off vision.
MAV is a proccess of elimination. Its very hard to diagnose so you woud go thru the inner ear rehab and tests first as there are no tests for MAV. If that does not help you can try MAV. MAV and VN can be similiar.
There area lot of drugs so dont be worried if a few dont work. I got lucky
Howie
I'm so sorry Scott to hear about your current sitch. I've only been feeling pretty well for a couple of days now - before that was the same old crap. It's on and off, on and off, and that in itself is so angst aggrivating. Sounds like you have had a terrible "blip" for an extended period of time, and not having much luck with the meds so far. I thought you found one that worked really well with you.
I'm with Howie in that sometimes you may need some Valium or Ativan or something to relieve you for a bit. It's just too much to handle sometimes - feeling so dang sick all of the time.
Scott - have you tried any kind of strict migraine diet yet? And have you picked up a copy of "Heal of Headache" yet? You've gotta do that. Right after reading the first paragraph I knew I was hooked. He hit the nail on the head throughout the book.
You're dead right on that one. I've been in a relapse now since April - 4 months of it - and I've really, really had enough. The SSRI I have always taken to stop this no longer works. What you describe is so true ... a few OK days usually followed by a string of nasty ones again. Last night something horrible hit me again and today I am just off in another world and on the edge of feeling depressed - not because I am on a downer about this but it's a physiological thing that happens with this sometimes. I just wake up with it and it hangs around for about 2 days until the next round. It's like my nervous system is under a massive attack. Do you feel like that too? I almost have this buzzing sensation in my body from it all like i've been plugged into an electric outlet.
Yup, I'm on a migraine diet most of the time although I do cheat occasionally - coffee, cheese, nuts etc are definitely out. Also read the book - it's great. He's right on the mark.
I'm going to chat to my doc on Tuesday on a new game plan - namely if pizotifen is doable with an SSRI. Probably not though as both play around with serotonin in opposite ways. One clinical trial I came across the other day showed a large proportion of vestibular migraine sufferers saw complete resolution of symptoms on 0.5 mg of pizotifen. One girl had been dizzy non-stop for 10 years, took the med and everything cleared up! Imagine how elated she must have been after 10 years of it and then nothing! Wow.
do all of these migraine preventatives have dizziness and drowsines as side effects?!?! how will i know if i'm even getting back to normal once i start taking it if that is a side effect. i know the neurontin made me severly tired after just the one i took at night. the dr said it should go away within 3-7 days. he said i should know if it helps within 3-4 weeks. does this sound right? if that is even my problem. then what, do i ask to try something else?? this is confusing...wish there was just one that would do it for everyone....ughhh
Uggg - we share the same boat Scott. I was doing pretty well for the past week - maybe around 75%-80%. I thought the migraine diet was working! Then today, I was at a soccer game, and noticed a wee feeling of imbalance. I immediately got worried - I know the difference now between a passing "spin", and a "clinger". And sure enough, an hour later I was totally dizzy and had to pop an Ativan. That was around noon - it's 6pm now and I'm feeling dizzy, nauseaus, and pretty darn upset that this freakin thing won't release me from it's horrid grip! I just want to be gradually getting well. I can handle set backs now and then, but after months and months it gets old real quick and I can't help but think something needs to be resolved by medication instead of just letting it "pass".
I tried thinking of what I could have done to cause the spell. Was it a busy weekend? Was it the sun/heat? I know it wasn't something I ate, because I hardly even EAT anymore for crying out loud. I'm getting tired of guessing on this thing. It's been 4 months for you - I know it seems like an eternity seriously! It's been about the same for me.
I haven't ever in my life been on any meds for migraine or depression/anxiety but after today I am seriously considering it. I am also seriously considering trying that "Diamox" that Baloh recommended although it kind of scares me too with the side effects (although Baloh says most people only get the tingling in hands).
I just had a chat to a doctor friend of mine who seems to think that 0.5 mg of pizotifen will be ok with an SSRI. I really hope so. I just need something to remove this heaviness clinging to me all the time ... I just want to see some light at the end of this black migraine tunnel from hell. My dream is to have this thing taken out by the anti-migraine at which point I can dump the SSRI and the side-effects which, ironically, I think are causing me all of this huge extra sensitivity to head pain.
Last night I made the mistake of eating some black olives I had bought at the deli a day before. Olives have never bothered me (or to the point I was aware) but my God, 15 minutes after eating them the headache from hell began brewing and then my neck got incredibly stiff and sore. I took two ibuprofens and went to bed not long after. I then spent the entire night as though I had been drugged - waking with the most dreadful feeling and mildly dizzy. What a nightmare this is. I know what you mean about not eating anything. It can make you paranoid this stuff.
Really think you should take the plunge and follow Baloh's guidance on this. He has tons of experience with this and the meds for treating it. I really don't think that diet alone can shift this thing. It only seems to make a dent in the side at best.
Sorry to hear about you blip scott... But you know as well as anyone that there is no timeframe for these things.. I know it stinks... I am in the middle of a 2 month blip right now that does not want to quit... I am tired of this crap and especially working long days with it. I am exhausted!!!
You will pull through...... try not to rock the boat... I know trying different things may seem like the answer, but my feeling is that these things themselves can set you back.. too much change you know... I try not to take ibuprofen either... but that depends on the severity of the headache, but that in itself makes me feel weird......
Oooo, that's horrid about the olives! Olives were not in the "Heal Your Headache" book as a trigger, but they were in fact on a current list I received from my latest neurologist. Yikes - I'm staying away from those! And forget about going out to eat anymore - I tried that and there is hardly anything on the menu that isn't a trigger. I now understand why hbep said she decided to do the meds because she couldn't handle the dietary restrictions. This is the pits!!
I think I will call my doc today and see if he can give me a script for Diamox. I woke up dizzy and headachy today, courtesy of my bout yesterday in the heat (triggered migraine). And these usually last for days dang it - the imbalance and headaches - it's never ending!!
Yeah, I simply couldn't tolerate the insane diet suggestions. However, I am still careful with what I eat despite being on the drugs. I avoid the really big triggers for me - chocolate, caffeine, weirdly bananas, mushrooms and cheese. I also go to MSG free chinese restaurants. I just think I don't need to be as crazily vigilant as I would have to be if I wasn't taking a preventative. I eat in restaurants a lot and just avoid the cheese dishes and the chocolate desserts.
The whole diet idea is a nice one but for me it came down to quality of life. I simply couldn't live like that.
Yeah, I simply couldn't tolerate the insane diet suggestions. However, I am still careful with what I eat despite being on the drugs. I avoid the really big triggers for me - chocolate, caffeine, weirdly bananas, mushrooms and cheese. I also go to MSG free chinese restaurants. I just think I don't need to be as crazily vigilant as I would have to be if I wasn't taking a preventative. I eat in restaurants a lot and just avoid the cheese dishes and the chocolate desserts.
The whole diet idea is a nice one but for me it came down to quality of life. I simply couldn't live like that.
hbep, i've probably read it somewhere but don't remember. what particular preventative are you on? how long before it started to work for you? i'm very leary to start the neurontin....but i feel like you, would much rather enjoy some good food thanks!
Thanks a lot for the info on Verapamil. So far I have heard really good things about it. The only side effect I heard of was a bit of constipation which is superb considering all of the other side effects the other meds can cause. 
thanks!
