I have had constant daily vestibular migraines for the past 2 years, and after trying 4 different preventative meds (Amitriptyline, Nortriptyline, Gabapentin and Topiramate) i sm still no nearer to getting relief. The meds only increased my symptoms beyond tolerable, and that was at the lowest doses (i stuck them out for 3 months but Each pill only increased severity day on day until i couldn’t stand it any more.) i have tried diet, lifestyle changes like getting regular sleep etc, but it made no difference at all to me. I am bedbound by this condition, it’s absolutely debilitating and i am feeling hopeless, it seems neverending, and i am afraid of being stuck like this, it’s not a life i want to live, constantly dizzy, anxious, depressed, unable to do anything but lie in bed. I have read through the success story posts on this forum but found that most, if not all, were down in part to medication. I feel like i am wasting my life away taking meds that make me worse, not better. Why would any other type of med have a different reaction than those i tried (its not as if i have only tried one type of drug, like anti-seizures, and therefore might react well to a different kind. All 4 i tried had the same result)? I can’t even tolerate the lowest dose of anything. So i would really like to hear from anyone who has had the same reaction to meds - they made you worse consistently (not just for a few weeks at first, i know they can make you worse initially before you get better, but as i said, i was consistently getting worse and worse over the whole 3 months i took each one) and if you have found any relief from other treatments? I’m beginning to feel like a difficult patient, that no one else has reacted like this to meds, as if i’m unusual… and that if i can’t tolerate meds then i can’t get better…
I’m sorry to hear that - it sounds like you’ve really given all of those drugs a good try.
Have you had any vestibular testing to rule out your ears as a cause? Testing could include:
- ENG test (electronystagmography)
- Rotational Chair testing
- VEMP testing
- ECochG testing
- Fistula testing
- Moving platform posturography (AKA computerized dynamic posturography – CDP)
Reference page for the above tests:
I think you’ve hit most of the drug categories that Dr. Hain recommends but you might take a look at his flow chart:
Thank you manatee (i love your avatar icon). I was seen by an audiologist because the doctors told me congestion and fluid in my ears was what caused my symptoms and so i was sent to an audiologist who examined me, checked for ear fluid and assessed my dizziness and said there’s no fluid and no ear problems. I had an mri of my innet ears, and another of my brain, which were both normal. A neurologist diagnosed me with vestibular migraines and i’m 99.99999% sure of it. I have a whole host of other symptoms linked to migraine, such as anxiety, mood changes, facial flushing, light and noise sensitivity, jaw muscle cramps, ear fullness, tinnitus, nausea, vomiting, palpitations etc etc the list goes on. I am going to ask about botox and hope that it helps, but i can’t help but feel like a complex case since i can’t seem to tolerate meds maybe i am wrong and neuros see lots of people reacting like me. I really hope they can help.
You’ve tried a calcium channel blocker, a GABA analog and two very similar tricyclic antidepressants. Maybe you could try a different class of med - one of the beta blockers or an SNRI. I failed a couple of the ones you mentioned, too before finding a groove with Venlafaxine.
So sorry to hear that - such a long time to suffer. I’m almost at 2 years and starting to feel much better. Initially I was put on Paxil which made things really bad. I finally worked up to 360mg of Verapamil and I get the feeling it will bring me back to normal eventually. Sometimes I felt that it would worsen one symptom and make another one better, but on average I could see improvements in all areas. It also helped to take time off of work to get to my max Verapamil dose. Did you try a calcium channel blocker? Effexor has a good reputation here as well.
Sounds like we’ve had remarkably similar experiences with VM so far - even very similar drugs tested too! I’m 3 years in, but only diagnosed about 18 months ago.
I wouldn’t give up though. I agree that it seems that most people who got better, especially the very badly affected such as ourselves, did so with the use of at least one medication. My plan is to keep trialing medications back-to-back until something eventually works.
Being stuck at home in bed is so soul-destroying isn’t it? All i can offer for now is sympathy and solidarity.
All the best, D
When you are bed bound it’s best just to try living one day at a time I found. Have a read of Lauren Kossack’s blog thread on here and also check out mymigrainebrain.com (Kelly Nunn). Two young women who recovered from MAV without meds. Other interventions ie Biofeed, diet, etc but apparently no meds. Also try to cut down/out any known triggers as much as possible. Speak to your medical advisor about some therapy, CBT maybe or some meds to help with the resultant anxiety and then try to get up. If you can walk to the bathroom, you should be able to get up. That was always my criteria. Try sitting out of bed in a chair for a while to start with, then maybe get washed and dressed and move to sit in another room. Room with a view for distraction if you are up to it. Then just try a tiny bit of walking about the room with the aid of a walking stick if need be. Lying in bed will do your balance no favours at all. If you are totally without sufficient balance to stand I would say ask for a doctor to home visit as soon as it can be arranged, This MAV Beast really gets to us all. People seem to recover from major heart attacks easier, quicker and without anyway near as much suffering. It may sound ‘cheesey’ but all we can do is to try little steps to move forward
Well said Helen…as always
My doctor didn’t want to give me beta blockers because she said there are guidelines about not giving it to people who have or have had asthma. Haven’t tried a calcium channel blocker but really uncomfortable with taking blood pressure meds.
Thanks D. You too! I’ve totally had enough of meds, i’m wasting my life away taking things which are supposed to make me better but instead do the opposite. I hope you feel better soon. X
perhaps take a look at Functional Medicine maybe. looks good in theory but expensive if that’s an issue.
I was the exact same. I refused to take it for almost 2 months after my doc prescribed it. But then I cut a 40mg pill in half and started there, slowly working up the dose week after week. After 3 months I’m now at 360mg and without any side effects that I’m aware of. I had low-normal blood pressure to begin with and it hasn’t changed. There were side effects as I increased the dose, such as tiredness, sleepy, groggy, but honestly I’ll take those symptoms over MAV ones and they have mostly disapeared.
A calcium channel blocker is a blood pressure medicine I think you will find. Designed to reduce blood pressure.
That’s encouraging. I am worried about it lowering my blood pressure, which is normal, and ending up feeling faint or breathless as a result. Which is why i am really wary of bp meds. Did you find that the other meds you tried increased your vm symptoms?
I didn’t try Topomax or Ami/Nort - after a bad experience with Paxil I didn’t want to mess with my neurotransmitters anymore. So, the blood pressure med was the first real medication I tried for VM. Its not a perfect med or anything, but my head pressure symptoms are nearly gone, which is awesome because I had them for 1.5 years. I just have rocking / floaty feelings left but they are getting milder as time goes on.
In my opinion, even exercise can lower your blood pressure, but your body adjusts over time to keep it up. I think the same thing occurs with blood pressure meds, my body just adjusted to it and I’m no longer faint or breathless as you put it (which did occur in the beginning).
I didn’t notice any improvement on topamax. Zonisamide and amitriptyline made the severity and frequency worse right away. I didn’t stick with the zonisamide very long, but there was not any change in the negatives from ami after a couple month. I started taking Zyrtec for something else and it’s kept my vestibular migraines away for over a year now. Before starting, they were 10-14 days apart. Within a couple days of starting Zyrtec I felt a difference. I know it’s not everyone’s problem, but for me, histamine intolerance seems to be my biggest issue so the Zyrtec helps. I didn’t have any obvious allergy symptoms by the way. I started the Zyrtec at my neurotologists suggestion to help with some ongoing ear fullness. It may not be the cure for you it has been for me, but it’s an easy and inexpensive try. What I find interesting is as a child, my migraines were helped by cyproheptadine, which is also an H1 antihistamine. For some people, some H1 antihistamines are more effective than others, so you may want to try different kinds if you notice some help, but feel like it could be better.
How long after taking the zyrtec did u notice a difference? I suffer from allergies. I take claritin but haven’t really taken it since my symptoms started 3 months ago, they haven’t really been acting up, well like 2 weeks ago i took it for 4 days because of allergies…just wondering if i should stick with claritin and try that or maybe zyrtec. I just want the dizziness and headaches to stop.
Within a couple days I could notice something different, but it took a while to feel good. Days 3 and 4 I felt like a VM was coming, but it didn’t fully materialize. Day 5 I did have one, but it was more mild than it had been. There was gradual improvement in the constant dizzy feeling after that. When I hit probably about 1 month, I was finally starting to feel hopeful that maybe I’d found an answer for me. I’ve had a handful of times when it felt like one might start, and I’ve even had mild migraine pain a couple times, but none of the full blown vertigo I used to get.
I know how frustrating it is and i am going through the med thing too. Topomax affected my kidneys. One you dd not mention, Divolproex, affected my liver. Gababentin is not as good as the others, but makes life bearable. I have had to increasethe dose too. May have to do it again and i have not had any blood tests to see how it is affecting me. I love this forum as you got so many great suggestions. I was also on amitriptyline, but i also have seizures (i wasn’t aware i had them because i had no outward signs). Amitriptyline can cause seizures. All of the meds made me feel better, but so far have side-effects. I share your frustration and worry, but neither one of us is out of options. Good luck.
I am doing meds and functional doctor, I wish I have started with functional medicine even though effexor helped me a lot. The functional dr is really great, lot’s of investigating.
Migraine is a symptom not a cause