I am so glad I have found this forum! It has saved my life the past few weeks. I was just diagnosed with VM two weeks ago. Extreme vertigo started 3 weeks ago and disequilibrium has been pretty much constant since. I had 3 major incidents of extreme vertigo and since then have had a constant “bobble head” feeling, lack of balance, neck discomfort, difficulty sitting up for more than a few minutes, and intermittent head pain. All of this causes extreme fatigue and feeling cognitively out of it. My headache pain is the least distressing of my symptoms, these vestibular symptoms are much more prominent and debilitating. Have not been able to work and will sadly be having to take a medical leave.
Neurologist started me on Naproxen, assuring me it would end all my symptoms in a few days. I started Naproxen my bobble head felt better within a day and I was hopeful. Then I had a horrible allergic reaction was in the ER (e.g., extremely painful heart palpations, throat tightening, very shallow breathing). Neurologist then put me on 5-days of steroids (Prednisone) hoping it would stop allergic reaction and migraine. Allergic symptoms subsided and VM symptoms continued. Tried 1 day of Imitrex with no relief.
Then Neurologist suggested a 7-day treatment of Tramadol (a narcotic). This is where I am now stuck. I am hesitant to try such a strong medication and read on the forums here these type of medications can be very unhelpful for VM. So I emailed him saying I was concerned about taking a narcotic and wondered if he could recommend an alternative. I am still awaiting a response and have been med-free for 2 days while I wait to hear back.
I think I may really need to advocate for myself here and ask if he is willing to try one of the VM recommended medications. Any suggestions from the research or your experience what type of drug may be most helpful at this stage? Do the preventative medications like beta blockers make sense to ask for even though I haven’t had an initial remission of symptoms?
Thank you, thank you, thank you for any support you can offer.
Diagnosis sounds pretty clear! Did the neuro treating you give you the VM diagnosis? I haven’t heard of Naproxen being a treatment for VM. Bad luck abut the allergic reaction!
VM specialist"s often prescribe a beta blocker for a starting med and it has been successful for many migraineurs. You don’t need to have remission of symptoms before starting on preventative meds. There are lists you can print off here & take to your next dr’s apt to discuss the options available.
Read Dr Silver’s info on treating VM - invaluable. He recommends no pain killers (cause rebound headaches) only preventatives.
Good luck - hope you get proper help, if not find a VM specialist who has plenty of experience & knows what meds work best!
I have used naproxen for vm that dr waterston from
Melb recommended and it didnt work :).
Thanks so much for your helpful responses! I welcome others experience and thoughts too. The more suggestions I can bring to my neurologist the better!
Barb- yes, my neurologist is the one who diagnosed me with VM. He seems knowledgable about what VM is but not necessarily treatment of it. I am hopeful he will be open to my request to try a preventative but a little nervous. I’ve been reading Silver’s work- any of these lists you specifically recommend to show the neurologist? Don’t want to rub him the wrong way but want to advocate for myself.
mvertigo.org/articles/nation … es2012.pdf
Lindsey - this list is quite clear and evidence-based so your doctor shouldn’t have any problems with it. In fact he would probably already have seen a copy!
Thank you Barb you are a lifesaver!!
My neuro emailed me back saying he is not ready to start me on a preventative since I have only had vestibular symptoms for a month. He is encouraging me to “ride out” the symptoms and take Valium to address vestibular symptoms as needed. I still have an appt tomorrow and will talk with him more about this. He is unaware I have had bouts of dizziness (much less severe and shorter in duration) before. I am hoping once I tell him this he will reconsider.
My vestibular sx are so great I have not be able to work - it feels hard to believe they would remit on their own. But is it possible? Is it possible I am being too catastrophic in thinking only a preventative could help me? Terrified even if I feel good enough to go back to work magically, without a preventative it will come back right away. Thoughts??
hmm…how about getting a second opinion for treatment. Sorry, can’t say whether your symptoms might stop without treatment - I haven’t heard of that approach before. I think it’s very important you have a good relationship with your neurologist and confidence that he knows exactly how to treat VM. He should be willing to work with you to trial various medications. Sorry I can’t help with specialist VM docs in LA but perhaps others could recommend.
When I was first diagnosed by a local neurologist he told me that Nortriptyline (my GP had already started me on it) was the only med that could help and 50mg was the highest dose I could take. (Not true!) Fortunately by that time I’d found this forum, had a recommendation to a specialist and although I had to fly interstate to see him have never regretted doing so. Having a consult with a doctor who understands this condition totally is amazing - even some of my weirdest symptoms he assured me were VM related!
Keep us posted!
Thank you Barb! Your validation helps a lot. Just feeling not alone really means the world to me. Thank you!
I will see the outcome of our in-person meeting tomorrow, I am hopeful when I talk to him in person he may be more open. If I am still not feeling great about it I plan on seeking out a second opinion. Perhaps I will post a separate request on the Board for any recommendations in San Francisco.
I think that you don’t need to be so afraid of Tramadol. If your doc suggests you try it for only a week then why not go for it? If it won’t work you can still try a preventive drug afterwards. But the preventive drugs take a long time to work and the Tramadol might work in just one week then apparently. Tramadol is an opioid as I understand it and thus it should have very few side effect, except addiction which should be of little concern if you take it in a controlled manner during short time.
I am not an expert on this but if I got the chance to take it I would:).
Just wanted to share an update for Barb and anyone who might be following this chain. I know I read lots of chains without commenting on them and get a lot from other people’s experiences. So I will share my follow-up for what it is worth.
Had a good appointment with my neuro yesterday. I think in our previous communication over email he was misunderstanding my symptoms as migraine pain while my current, chronic concern is vestibular symptoms. Now that he better understands I feel confident we are headed in the right direction with our medication trial. He started me on a very low-dose of Klonopin. Started taking it and already feel some slight relief! Feeling (cautiously) hopeful!!
Thank you everyone, especially Barb, for your support. It means so much to not feel as alone when you are struggling with this illness. I will keep updating as my story unfolds in the hopes that it can be helpful to others.
Good news Lindsey - Klonopin has helped quite a few people on our forum. Hope it continues to give you relief.
My wife has recently be diagnosed with Vestibular Migraine. We’ve had no end of problems with doctors and there lack of interest once she was diagnosed. The Neurologist has washed his hands of us for 12months and told us to try the all the drugs on the list: propranolol, Topiramate, Amitriptyline, Pizotifen etc…
I tried to download the PDF list of Meds you linked to, but the link is no longer available, I was wondering if you could share it again as im wanting as much information as I can get on wahts the best drug for her to try next. Also you mentioned Dr Silvers info on treating VM, could you point me to that as i can’t find it.