Hello all. My wife got diagnosed with Vestibular Migraine 5 months ago. It took 5 doctor and 1 specialist o diagnose. She been off work for 6 months and its been very stressful for her. She started on the propranolol for over 2 months with no effect. We’ve moved on to Topiramate, we’ve been going for almost 3 months, increasing the dosage very slowly so the side effects are not too bad. IM worried that she is never going to get better, is anything i can be doing. I feel lost unable to help. Is topiramate the right course of action or should we be moving on if we’ve seen no real change. Please help any advise or guidance would be much appreciated. Thanks N
http://www.mvertigo.org/t/vestibular-migraine-survival-guide-2014/2244?page=3
Thought you might find the above link helpful.
Be patient with your wife, and try to help her stay positive. This condition is so isolating and can (understandably) cause anxiety and depression too, so watch out for signs of that.
I’ve had my vestibular migraine (with constant disequilibrium) for almost a year now and haven’t been able to work or drive, and am still looking for “the solution”, but I was delayed in trying many drugs as I was breastfeeding when I first got VM so I ended up going through a lengthy weaning process first.
The only thing I’ve found that’s helped significantly is clinical physio with the Watson Headache Approach technique which is specifically designed for migraine / severe headache. It’s hugely reduced the severity of my disequilibrium and associated vision probs and nausea, so could be something that you might like to try.
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Faera,
Where do you live? I’ve come across the Watson Headache Approach being mentioned before but they are based in Australia whereas I am in the USA. I’m pretty sure this approach would help me since ALL my dizziness began within a few days of starting physical therapy with neck manipulations. Any advise on how to track someone qualified to do this in the USA or self-help tips?
Thanks.
Hi Faera
Thanks for replying, this is a really good start for us. Its getting to that point where her job is coming into question. Were in the UK so I’m not sure how we’d go about getting help from ‘Watson Headache Approach’, but I guess i’ll contact them and see what they suggest.
She on Topiramate at 50mg for the last 2 weeks, she wanting to up the dose to 75mg so she can start to feel better. This mainly because work want her back or job is on the line… This of course makes it all more stressfully. She has been give depression drugs like citalopram (SSRI’s) but she has decided to not to take them until she is up to 100mg(magic dose) on the Topiramate. The problem in all this is that were hoping that this will work. I guess its just a waiting game. Thanks again for the help, its good to talk. I’ll let know how we get on. Thanks again. N
I’m on 50mg topamax too and wanting to increase my dosage as well. It really is just trial and error to find a drug (and dosage) that works for each individual.
I’m in Melbourne, Australia, and the Watson Headache Approach main clinic is based in Adelaide, however I’ve spoken with both Jane and Dean Watson by phone before and they’re both incredibly helpful, knowledgeable and caring. They train physios from all over the world. If you send them an mail Jane will get back to you (it may take a little while as they do get a large number of emails) and try to find a practitioner near you that they’ve trained.
@Fussyfussy
@nimrodnate
@nimrodnate I noticed in another of your posts it sounds like your current neurologist might not be the most helpful? I’ve heard a lot of people here talk very highly of Dr Surenthiran in the UK - he might be worth looking up if you’re after a second opinion (or a more supportive one!?)
As you are discovering, this is a challenging diagnosis. It took me several years to find the right doctor (otoneurologist) and a helpful diagnosis. My doctor calls it “Silent Migraine” - I get all the neurological symptoms (in full) but not the headaches. He put me on Nortriptyline (an antidepressive, even though I do not suffer from depression) for 3 months - starting with 25 mgs and then 50 and then 25 and then 10. It took about 12 weeks. But he insisted I read “Healing Your Headaches 1-2-3” by Dr David Buchholz from Johns-Hopkins and he gave me the handout based on Teixido and Carey “More Than A Headache”, also from Johns-Hopkins. They all believe that reducing environmental and ingested triggers is the key to reducing symptoms. They all agree that you cannot just take pills. I was off the meds for 15 months, had too many triggers piling up and then went back on the meds for three months. I have now been off for 10 months and have a better handle on what to avoid. I am keeping my fingers crossed. If you want more details, I have posted them on my blog at www.vertigotalesandtastes.blogspot.com The MVertigo site has been very helpful and supportive to me. I wish you and your wife good luck. Working with a knowledgeable doctor is the key.
Thanks so much!
I’ll try to email them, like you said.
I wish you a speedy recovery 
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Hi, all. Thanks for this. I’ll try this Dr S, in BlackHeath and see how it develops.
I’d say the biggest problem now it that her stress and anxiety has go through the roof dealing with all the medical requirements and her work pushing to dismiss her! She questioning if its the topriamate or the stress thats making her worse. Im going to get her to sign up to this blog I think, as I think she just needs to talk more… One last ask, how you guys deal with the stress? Ive ordered the 123 headache book is there anything else we could try? Play with Kittens?
Thanks again.
I’m sorry your wife is going through this.
My advice to myself is to keep remembering that this will be over one day, God willing. And I pray. Plus, I do mindfulness as much as I can and positivity (not letting bad thoughts or worst case scenarios take over).
One thing that I have been doing almost daily is deep breathing exercises. The yoga breathing is something I learned from my Yoga teacher. I do that with eyes closed while listening to Zen music. Once it gets me yawning (shows that the parasympathetic nervous system kicked in) I know that I am relaxing and it is good for my brain.
Finally, I think your encouragement that this is going to be over one day is very important for her to be able to go on.
Asli.
@nimrodnate I haven’t been on here for a while as have been in NZ visiting family, but csme across this place (on another thread) in UK that does Watson Headache Approach:http://lindygriffiths.co.uk/headache-clinic/
I really hope things are starting to improve for your wife. Any luck with topamax? I’m just coming off it and about to try metoprolol. I’m about 80% better from the physio, but still need to find a med that will get rid of the last 20% of disequilibrium so I can feel still (and normal) again!