Hi to everyone,
I have seen my specialist again she really is convinced it is vestibular migraine or MAV, I started my new course of tablets Friday night, and have been feeling pretty rubbish, back to feeling dizzy, and wobbly things looking strange, i just want to lay down and close my eyes.
The first night I took my new tablet, (Lofepramine or Gamanil) I was very nervous (I always am when i take somthing new) had an ok night's sleep, then Sat night I couldn't get to sleep till 5am, kept getting tingling sensations, twitches, and panicy. last night i took them and slept fine. I just hope these tablets do the trick, but alot of people have recomended that anti depressants seem to have good results on MAV. Does anyone know? or has anyone tried anti depressants for migraine related dizziness? My understanding is that these tablets don't treat the problem, but make it bareable until it goes on its own. Is that right??
so at the mo just waiting foe the tablets to kick in, I'm so inpatient i feel like there not going to work but i know i have to give it a couple of weeks. any advice yet again would be apperciated. Shenxxxxxxxxx
The following user gives a hug of support to shen: rona lady (09-25-2011)
I looked at your post with great interest as not that many people are dealing with MAV on this site. There are a few. I am probably one of them, so it grabbed my attention.
I am unfamiliar with your medications. I am taking Atacand as a preventative, plus Klonopin every day. The theory is, I have vestibular damage from a Lab attack a year and a half ago, which I am not compensating for, and the MAV is regularly assaulting my vestibular system and not allowing me to ever compensate and feel normal.
So far my experience with the Atacand and Klonopin mix has been good. It's not perfect as I have some bad days still, but all in all I run at 80-90% about 75% of the time.
My neurologist said it may take a few different tries to find the right migraine medication for each individual. Also, with the Atacand my doctor said it takes about a month to see if it's effective.
Speaking of, yesterday I had a MAV attack and I was a mess all night and feel washed out this morning. I was fine in the morning then went to the theater, at the concession stand there were lots of flashing lights and stuff and suddenly I felt that motionsick thing. I went into the film and had to close my eyes for more than half of it. My head hurt essentially in my right ear and that right side of my head, and when I got home all I could do was go to bed. I got up for a little bit, felt horrible, then went to bed at 10:30, got up at 10:30 this morning and felt like I was hung over or something.
I am curious what your experience is with MAV.
Do you actually have headaches, or is it just the dizziness? Do you mind sharing your whole experience with me? I am curious as to what you experience when you have an attack, and do you have constant issues or just periodic attacks? Thanks.
I don't mind sharing my experience at all, thanks for taking an interest.
This thing came on very quick, i went out for a meal one Friday night and had a banging headache, now i do get tension headcahes so i took some nurofen and thought i'll be ok in half hour or so, We sat at a table on there was a light above my haed that was reflecting on the table, i could hardly keep my eyes open, but carried on any way. On the way home in the car my hearing went down ( like when you are on a plane and the engines stop roaring and go quieter) it was like that, my eyes felt funny i told my boyf to drive faster to get me home but when he did i got worse. i eventually got home and had a panic attack ( my second in my life) i was then violently sick but seemed to feel ok, infact i put it down to food poisoning! ( i wish) any way carried on as normal but felt strange at work, as in i felt off balance things looked either really small and far away or really big and scary, i kept having panic attacks.
To begin with the doc said it was purely panic attacks and gave me medication for that, obviosly didn't work. Saw another doc and i suggested it might be an inner ear problem, by this time i could hardly walk, talk and didn't want to see any one not even family, this upset me as i am soo active.
the doc guessed it could be labs and put me on some tabs called cinnarizine they had little effect, i was also given Stemitil around Nov to help steady me out. I kept notes of how i was feeling and when i got my speacilist appointment i took them to her to look at, she thought it was mav but wanted the test done to eliminate anything else. So i've felt like this constantly, it was no way as bad as it was in the begining but i'm definatley not better, i would say on a good day i feel 80% and on a bad day 45-50%. i dont get any pain in the head which i am thankful for and anyone that has i really feel for.
I also feel bad around the time of my period, I guess thats hormones i don't know what the link is, only that migraines are rife around this time so i guess they enhance the dizziness because of this.
I have been on tablets called Sanomigran or they are also known as sandomigran ( Jen30 told me this) they a pretty good and now i'm on an anti depressant called Lofepramine also known as Gamanil i'm only a week into this so waiting to see the results, i came off the Sanomigran as i was on a high dose but not feeling better than when i was on a low dose, not sure if i was wrong to do that but spoke to the doc and she said i was welcome to try this new tablet, however she said i could always go back on it if i dont see any improvement with the Gamamil, Hbep and Jen30 has suggested VRT which i am starting tomorrow, feeling pretty rubbish at the mo so i want to try everything. I know ive gone on for ages and i hope that i have answered your questions and it wasn't too boring! would you mind telling me your symptoms, what you've tried etc.
Thanks for sharing your info, very interesting. I think our stories are somewhat similar. When did all this start for you?
My story goes like this. December 2002, middle of the night, I woke up with violent spinning (as if I am on a round and round, literally holding on to the bed for dear life). Attack lasted 20 seconds or so, and I had several. Went to the ER, was told I had Labyrinthitis and given Meclizine which essentially knocked me out for two days. I had no more vertigo after being medicated. I recovered from that whole thing in a week, and went on my way for 6 months.
June 2003, I started to feel a subtle disequillibrium feeling similar to the sensation of having one too many drinks. I also felt a buzzing in the back of my head and noticed tinnitus all the time. Saw a doc who told me it was Lab, and that they come in different levels, and this was different from my first attack, but that it should pass. Put me back on Meclizine which was unbearable because of it's sleepy effects. Then I tried several other medications related to motionsickness, none of which really helped, and the side effects were annoying. The symptoms increased over a matter of weeks and really peaked in July. Had a few panic attacks just like you said. Horrible feeling. Other symptoms included mild vertigo, movement of stationary objects, dizziness, nausea, fatigue, feeling as if I were on another plain from everyone else, very spacey.
August 2003, referred to an ENT. She ordered hearing, MRI, ENG and ECoG tests. Both ENG and ECoG were slightly abnormal, she diagnosed me with Meniere's Disease and referred me to a Neuro Otologist. Symptoms continued, slightly less, but still very much there.
Fall 2003, saw the Neuro Otologist who analyzed my situation and said I don't have Meniere's Disease, but that I do have vestibular damage due to Lab and Vestibular Neuronitis. He also proposed that I have MAV because of family history (heavy on both sides for migraine headaches). He recommended I go on Klonopin (vestibular supressant, slows down the nervous system) but being uncomfortable with all the drugs I have tried so far, I refused. Symptoms continued.
February 2004, I finally cave after a discussion with the Neuro Otologist and take Klonopin. .25 mg 2x a day. After a few weeks, getting past sleepy effects, I find it to be very helpful. I start feeling more normal than I have in a while.
March 2004, I see the Neurologist about MAV. I describe my symptoms along with a couple of suspicious headaches (not my main complaint and not that obvious) and he feels that MAV is contributing to my ails. Puts me on Atacand which is a blood pressure medication (my blood pressure is fine) that is used for Migraine prevention as well.
April 2004 -, I actually have some days in the 90% range.
Current, I continue to have ups and downs, but a lot more ups for the most part. My current complaints are still chronic tinnitus, mild vertigo, occasional dizziness, and so on. Yesterday's episode was so suspicious to me as far as being MAV. It all made a lot of sense. The headache, the intense wooziness and my need to go to bed and put a pillow over my head to block out light and sound.
I too have escalated symptoms around my period. I have also heard that can be due to the higher retention of fluid during that time of the month, but I attribute it to hormones as I feel very irritable and PMSy with the escalated symptoms.
So..that's my longwinded story! We all love to tell our stories I think! It's just so frustrating to not have something that's easily diagnosed. So anyway, tell me when this started, how long have you been coping?
I think you are right, we do seem to have similar cases.
Mine started in Sept 03, like i said the first three months were awful, then it seemed not to get better but more manage-able, however saying that i was a mess everyday, i don't think i could go back to that, i was working but i felt so ill all the time i spent my day at work crying and was no use to anyone.
by that point i was on two kinds of tablets, Stemitil and Cinnarizine so i thought they helped me a little.
When i went to see the specialist in Feb 04 she gave me Beta blockers, i didn't like them so she put me on Sanomigran which made me feel the best out of the whole time I've been like this, however after taking them for four months I felt like the good and bad days were still pretty even so i asked to go on something else to see if they would make the good days out number the bad, at the moment i'm about nine days in to taking Lofepramine (Gamanil) and i'm feeling a little bit off colour and i'm having more feelings of movement but i will have to see how they go, i was told to give them six weeks before i would tell if they help. I have read that anti depreeants from the Tricyclic family are effective for MAV mine is a new ish tablet that is suppose to have milder side effects than the previous tablet ( not sure what that is called.)
So hopefully these tablets will work, if not the doc said i could always go back on the Sanomigran or i could see a neurologist and he might put me anti epilectic drugs which are suppose to work if all else fails.
The only thing about the Sanomigran was i put on alot of weight and i was so very tierd ( i wasn't getting up until 12.30 in the afternoon) but for the time i was awake i was ok and i'd rather be tired and over weight than dizzy!!
My plan now is to carry on with the Lofepramine, once i start feeling the effects i want to come off the stemitil as they are suppose to hinder compensation, I have started doing VRT too, i have just done 20 mins and i'm going to do 20 mins before bed, I don't know if thats enough.
I go for a 20-25 minute walk most nights too. Im keeping a diary so i have proof of my progress because its so easy to forget the good days when i have a bad one.
On one of the other post i have written, Hbep has replied and given the name of a really good article, have look its a recent one, I think its under "Vestibular migraine treatment" just above or below this post.
What kind of things have you tried? Do you do VRT? Is there anything that you find effective?
The things I've tried I mentioned so far. Meds. I haven't done any VRT, it hasn't been recommended to me at all. I am not sure why. My doc wants to see me in two months to reassess the situation, so I guess I'll go from there on any other treatments.
So far I would say the Klonopin and Atacand have been the most effective treatments for me. It's the closest to normal as I have been so far. But I have setbacks, like right now. This last couple days have been rough. And I totally attribute it to the migraine attack two days ago.
As far as weight gain, I can relate. I actually gained 20 lbs since last year because of the symptoms. I normally run 6 days a week, and I had just completely my first marathon a month before this mess started. Then, all exercise stopped, and the nausea, which I equate with the feeling of morning sickness made me feel as if I had to keep a steady amount of food in my stomach at all times. So..I gained the weight. Thankfully, since I have been on the Klonopin I have been able to resume my running and also diet because it's virtually removed that sick to the stomach feeling that drove me nuts. So, I have now lost 23 lbs which makes me feel SO good. It was just so frustrating to have the symptoms, the scale climbing, the pants too tight, and everything else. Now I feel like at least I have a piece of my life back, and I just have to contend with the setback days and look forward to the better ones.
I am unfamiliar with your medications. I know my doc said the Atacand is one of the lowest side effect migraine meds, so he decided to start there. The only side effect I have is lightheadedness when I stand up too fast, and that continues still. So I just have to be careful.
Anyway, sorry that you have to deal with the weight gain. Another thing I found troubling was taking birth control pills. I got off them and I feel that my hormones are more predictable. I know when I am going to get worse, every month. It was harder to tell when I was taking the pill. I also felt like I don't need another pill to take right now, I have a good mix of chemicals swimming around in my body! How about you, what are your feelings about the hormonal effects of all this on you?
I'm glad that your medication seems to be doing ok for you, i too have had a couple of bad days with these new tablets but I'm praying they work because I have lost 2lbs this week, i no its a little amount but i'm so pleased.Well done on your weight loss that is fantastic!
I agree with the hormone thing, I came off the contraceptive pill also, so I know when i'm due on i'll feel a bit rubbish.
The name of the article i mentioned from Hbep is in the post called, "question for Hbep and wowweee."
I went out last night for a couple of hours, I didn't feel fantastic but I thought I'll sit it out and just try my hardest to ignore the feeling.
When i did the Vrt some of the exercises made me dizzy but thats suppose to be good so although i feel like i need to lay down after i know that its doing something for me.
If you don't mind me asking, where abouts in the world are you? I've not heard of your medication either. What is the Klonopin?
I'm in England, Nottingham.
Are you able to work? I've been off work since around Feb, I'm desperate to get back back as i feel once i'm doing "normal" things It might help the way i feel. When i was ill back in Sept, i was on and off working, but because i didn't feel myself and at the time and i wasn't sure what was wrong with me, i was off balance all the time but when i got a really bad dizzy spell i would panic which would make me feel worse, this feeling i had at work really put me off going as i would remember the bad days, i get a nervous feeling when i think back to those dark days.
Now i know whats wrong with me i know nothing bad will happen to me but it doesn't stop me feeling nervous and panicy.
I live in Colorado, USA. Klonopin is also called Clonazipam. It's a Valium related drug, but supposedly less addicting/habitforming.
I don't work outside the home, I am a stay at home, home schooling mom. So although I don't have to get up for work, I do school my two young children. It's been ok though. And when I have a bad day I have the freedom to take it easy and we make up for it later.
Two pounds in a week is great. That's how I started my loss. I think any more than that and it's questionable if it will stay off. I just cut back on my dinner intake and stopped eating so many in between meal snacks I wasn't even thinking about (like when I am cooking I usually do a lot of tasting). But I don't deprive myself, I still have my bagel and mocha each morning, and starbucks frappuccinos once a week (down from 4 times a week!). And I have a small bowl of light ice cream at night. If I can't have those things, I won't ever lose weight. I can't give them up, so I decided it was easier to eat less dinner and lunch is a salad or a nutrition bar of some sort. It works for me! Don't dispair, once you get the head thing under control, at least to a manageable level, you'll be able to work on the other issues. That's how I decided to handle it. I bought the larger clothes and just accepted that there wasn't much I could do when I had this other thing going on. But once I had a few good days in a row I thought, time to work on this stuff a little. And fortunately, it hasn't been too hard since my symptoms have been overall lower.
And btw, my head is doing better today so far. I think the migraine and aftermath has passed for the moment. What a mess. How often are you being assaulted? My understanding is that you have chronic symptoms but that they escalate right?
Well, time to get off the computer and start some school. This is our last week and then summer break. Ahhh!
My syptoms can range from mild to quite bad, i dont know if this is because i am trying different meds at the moment and i have to keep adjusting, yesterday i didn't feel to bad, i feel now i'm doing the VRT and walking most nights it has built my confidence, however saying that when i've had a good day, i find myself waking up nervous the next day, as i'm not sure how i willl feel, that is how i feel today. I'm just trying to get use to these tablets and i'm going to stick with them and see what results i get.
I always feel like its there even when i have a good day, and i'm not sure if that is because i expect it to be there, at the moment i'm having the days where i the floor doesn't move so much and i feel a bit more steady, ( i'm always aprehensive saying things like that just incase they return sooner) my eyes feel a bit odd today, things look very spacey if you can understand what i mean! but i shall keep myself busy and try and relax a bit more.
It will be the time of the month in a week or so, so i'm very nervous for thta. how have oyu been latley?
i just wanted to say, when i was going thru trying to get a diagnosis, they thought i had mav, and my dr. told me to get the heal your headace book, and follow that diet it was written by a top neurologist at johns hopkins. so see if you can track it down, it really could be your answer, and they try to avoid meds, once you read it you understand much more as to whats going on. lib
Thanks for the tip Lib, I'll look for the book. Do you have MAV after-all or was it a misdiagnosis?
Shen, I am doing ok. Things have calmed down a bit. I can sympathize with the medication game. You just have to give each thing a whirl to see if they are worthwhile, but meanwhile your life is passing by. Very frustrating. I do know what you mean when you describe your symptoms. To add insult to injury, my 6 year old son was just diagnosed with Migraine. Can you believe it? No generation is spared in this family. He's got terrible "eye headaches". We are starting a headache journal to keep track and then see the doc again in a month to decide if we should start a preventative medication or just treat the symptoms. He goes to bed with tylenol and seems to be ok in the morning. One thing I read is that deep sleep is the best remedy for a migraine headache. Interesting, but it seems to be the case with my son. Speaking of...last day of school. Got to get started here.
I can not believe your son has started the migraine thing, poor little soul, i pray it dosen't get bad for him and hopefully it will be nipped in the bud with meds.
I hope the last day of school went well! Hopefully you can enjoy a nice summer break now.
Its suppose to be summertime here but it has done nothing but rain and had winds up to 35mph. No cahnce of relaxing in the sun in the back garden.
I would love to go on holiday just very worried about how i would feel if if flew, I don't want to do anything that will make me any worse at the moment, not brave enough.
second week into my tablets tomorrow, I feel like i should be feeling some effects by now, well the last two days haven't been so bad i had a good old cry today, which made me feel better (kind of) I'm just too impaitent I just worry that the tablets i'm on aren't doing anything. I know i sound frantic!
anyway, i must go to bed hopefully tomorrow will be better.
Isn't that the pits about my son. I really feel for him. Hopefully it won't turn into a big thing. Right now he just sleeps it off, and it doesn't interfere with his life. So that's really a blessing.
As far as flying goes, I too have had that anxiety but it didn't pan out. I did ok flying across the country. There was a little oddness, and a hung over feeling the next day, but after that I was fine. I have heard some horror stories on this topic site however.
I can also sympathize with the little breakdowns. Even when I have had lots of good days in a row, when I have a bad one I just get SO frustrated that it's not over with. I think the hormones really play into those emotions too. It's a big nasty ball of mess when everything comes on. Between the PMS, dizzies, wooziness, it all feels a bit like the end of the world. But I try to remind myself that it will pass, and I will feel somewhat normal again at some point. In the early stages of all this I thought my head would be stuck in permanant disequillibrium status. It was a nightmare thought. But now that I have some reasonable clarity in my life with the medications, I can see that there's a light at the end of the tunnel. Hopefully your doc will get you set up with the right medications and you'll feel the same way soon. It took a whole month to get past the side effects of my migraine meds, and realize if they were helping. But it was almost a month exactly when I noticed my head was clearer, than I wasn't having such raging attacks at the usual time of the month. It's not perfect, but I think it's helping. There are SO many migraine meds out there, there's got to be a good one for you.
The Klonopin has been huge for me. It's a valium drug (and potentially addicting) so my doc is going to keep me on it two more months (total of 6) and then taper me off to see where I stand. That sounds reasonable. I guess worse case scenario, I go back on. I think I mentioned that it slows the nervous system down, and somehow it works out some of that vestibular mess along with that. And it's also indicated for panic attacks which I haven't had in a while, even without the meds, but worth mentioning. I wonder if that's a consideration for you at all. It was the first drug I tried that was worth a darn.
Well, school went well, and now we are done for the summer. My son is thrilled, he's outside digging in the dirt right now with his buddies. It's been rough because other kids have been done with school for several weeks, but we started our home school stuff a few weeks later, so we had to make up for it somewhere. Now we are done. Ahh. I like the break too!