Hi guys,
I have been constantly dizzy since December 2012. I just woke up one day dizzy. For 4 months, it was just a little off balance. I saw ENT, my GP, and took an antibiotic for it. Nothing worked. Then about 3 weeks ago, it suddenly got worse. Couldn’t handle lights, terrible nausea, way more dizzy, blurred vision, and a horrible headache. Over the next 2 days, 2 different migraine “cocktails” didn’t work, Imitrex didn’t work, and another IV fluid they tried (some sort of acid) didn’t work either. Finally, they gave me a steroid pill treatment, and over the next 6 days the headache receded and my vision returned. However, I am still dizzy to this day. And actually, yesterday the dizziness got worse. I drove to work in the morning, and had to get a ride home. I am only on day 7 of Amitriptyline and I’ve been to the ER and I’ve called my neurologist twice and everybody keeps saying “give the amitriptyline time to work”…which I read can be 2-6 weeks? Am I just supposed to be dizzy for the next month? I am missing work and I don’t ever leave my apartment. Being dizzy 24/7 is terrible. I take clonazepam for anxiety / stress (which started the same time all of this dizziness / migraine stuff did). The clonazepam helps with the dizziness a little, but it makes me groggy.
In short:
Is it normal for MAV (I assume that’s what I have) to show as ONLY dizziness for 4 months, and then blow up into a full on migraine?
Will the Amitriptyline stop this dizziness in time?
My neurologist mentioned some physical therapy that can help me regain my balance, anybody have luck with that?
My neurologist said to call them back next Wednesday (the 17th) and if I’m still dizzy, they will take ‘the next steps.’ But I just need some encouragement right now. Any words of advice are appreciated.
Amitriptyline (as well as most other migraine drugs) can take about 6-8 weeks to start to kick in. Sometimes it can take even longer esp. for the max benefit to happen. In order for physical therapy to work, you need to get the migraine “under control”- I’m not even sure what this means exactly- except you have to be on drugs that are making you feel somewhat better for the therapy to work.
it is possible that the amitriptyline will only improve some symptoms for you and not others- that has been my experience with nortriptyline. But I don’t think you have given it enough time to draw that conclusion yet. What visual symptoms do you have that are improving now?
my right eye was very blurry, and i had stars in my peripheral vision. I still see little stars pop up every now and then, but not like before. I have a few floaters too, but my neuro says they are unrelated. I’m glad to hear it’s normal for a drug to take away some side effects and not others…I’m starting to worry that I’ll be dizzy forever
I e-mailed Dr. Hain and he said it is not normal for certain symptoms to improve while others remain…he said that symptoms usually all improve together. So now I’m officially concerned about this dizziness.
hmmm that is strange…maybe others on here will chime in and see what their experience is? i have seen many who only find relief from a few symptoms and not others on here. you havent been on the ami long enough to know that it won’t help with your dizziness so don’t worry yet. and if it doesn’t there are a ton of other meds to try- its not the end of the road by any means.
p.s. i wish dr. hain were right becaues if he was I would be in great shape right now as would many others on here!!! it does make sense doesnt it that the med would work on all symptoms but unfortunately mav sucks to much to make sense.
it is definitely possible you might need a 2nd drug for the dizziness- but don’t worry about that now- you haven’t given it long enough- I am amazed it helped your other symptoms so quickly. With nortriptyline i think it took me about 4 weeks before I saw ANY change. Typically it can take at least 6-8 weeks but sometimes even longer for it to really kick in.
Aw I know it doesn’t help but it took almost 18months to secure a diagnosis for me, and that was with daily dizziness!
My understanding on these migraine meds is that nobody can say which medication will work for which person, quite often you need to try a few before you get relief, and again this may not remove all the symptoms entirely but may just reduce the severity.
Also, ironically the side effect of some of the meds is dizziness…
I think if you have vertigo that isn’t caused by ear infection etc, then you may need to prepare yourself that imbalance is now a part of your life. That has been the hardest thing for me to do, but things have been easier since I have
I suffer from permanent imbalance with “spins” that happen in flashes maybe once a day, it is the imbalance in fact that is the most debilitating for me.
Try not to be scared, and keep faith that you will get better (even if you are not totally cured). It may take some time to find the right medication for you, but I am sure you will get to the point where you can get back to work and resume your life.
Sorry you have to be with us. I can feel the anxiety in your posts, which is perfectly understandable, but it’s not helping you. Stress and anxiety feed the migraine monster. I know it’s very difficult to be off work for a long time, especially if you are getting pressure from your employer but this is one of those times in your life when you really do need to put yourself first and it does take time for chronic migraine to improve.
From my experience, all your symptoms are ‘normal’ for chronic migraine. Improvement is gradual and it can be hard to measure that improvement when it is so slow and to try and tease out which symptoms are improving faster than others. When you see your specialist he/she will be able to reflect back to you a much clearer picture of your progress precisely because a few weeks will have elapsed, whereas your natural reaction is to be analysing your symptoms every day. All the meds do take time to work, it’s gradual.
Try and take it easy and be kind to yourself. Allow the meds to work. Sleep, eat well, do gentle, regular exercise, avoid alcohol and caffeine, meditate. Come here for support. Things will get better.
thank you guys VERY much for the supportive words. Things are improving overall, but today I had a slight relapse. My right eye is double vision. left eye is totally normal. Knowing that I had a little relapse of extreme dizziness last week, I am not as panicked about this. I assume it’ll go away tomorrow or Saturday.
Also, today is my 2 week mark on amitriptyline and my neurologist upped my dose from 10mg a day to 25mg. The 10mg stopped making me drowsy at around day 11. But I expect to be drowsy from the higher dose for a week or so. At least it’ll help me sleep well… She said hopefully this higher dose will stop my random relapses and kill off the last of my headaches. Thoughts?
Nobody can really answer that for you. Unfortunately some of us have 24/7 symptoms and have done for many years however for most people they are able to get some control over their symptoms with the passage of time and/or finding a med that helps. If you have VM then it doesn’t tend to just go away and not come back but there is a whole spectrum of suffering which can include occasional bouts or attacks that go away completely in between through to incapacitating 24/7 symptoms. It is quite common to take a while to get a diagnosis, it took me 3.5 years!! So you are lucky to have reached this site relatively quickly. I hope you are able to find a med or combination of meds to help. You are in the right place x
so after being on Ami for 5 weeks now, all of a sudden it makes my body temperature raise. It gets up to about 99.8*…not terrible, but it makes me sweat for sure. I see that this is one of the listed side effects, but it has never happened until this week. Anybody else have something similar happen? I thought my body was supposed to get used to the meds as time progresses?
Just curious if you are also on the Migraine Diet to figure out if you have food triggers. The key is to keep all of your triggers low (the one’s that you can control). So, if say chocolate or caffeine is a trigger for you, if you avoid them–that will be one less trigger you need to worry about.
