The Vestibular Migraine & Secondary Hydrops Community
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Hey Guys

#1

I’ve been coming on this forum for a few months so I thought I’d share my story. Maybe some of you guys can help me as I go through this and maybe I can help some of you along the way as well.

I’m a 37 year old internal medicine physician. I was living a pretty care free life in Hawaii when my wife got into CRNA (nurse anesthesia) school here in Phoenix AZ so we decided to move for a few years so she could finish her degree. Everything was going fine until one day this past June. I was rounding on my patients in the hospital when BOOM! The entire room felt like it just shifted and I had to grab the wall to steady myself. Luckily, the sensation became less intense after a few seconds and I was able to finish my day.

I’ve always been a pretty stoic person, so I basically just sucked it up and carried on the next few months as always despite the fact that 90% of my days were terrible. Waxing and waning vertigo, nausea, weird pressure like headaches that seem to change locations, feelings like my face and head were jumbled up. I thought it was just something that would get better so I carried on.

After 3-4 months it definitely was not getting better so I asked a neurologist friend of mine and he said it was likely Vestibular Migraine and referred me to a Dr Terry Fife here in Phoenix. Dr Fife agreed and started me on Verapamil 240 daily and Mg supplements. I’ve been on this regimen for nearly 6 months now. It does seem to have helped a little but by no means am I back to normal. In a given week I probably have 1-2 days of near normal, 3-4 days of tolerable badness and 1-2 days of near unbearable junk. It’s becoming so distressing.

I guess I have a few questions that maybe you guys can help me with. 1) Will this ever get better? What is the best that I can expect and what should be my goals? 2) Any advice on lifestyle adjustments I should make? I already eat mostly veggies, I’ve cut out my alcohol :frowning: and caffeine :frowning: 3) Do you guys know anyone in the Phoenix area or elsewhere that is a specialist in this condition that might be a little more reachable than Dr. Fife? He seems very knowledgeable, but he is impossible to get in touch with and if this is going to be a chronic condition that I am going to be dealing with for a long time I’d like someone that could help walk me through it a little better. 4) Any other tips or tricks or anything else that you guys can think of that you think I should know?

Thanks for listening,
Jordan

#2

Hey Jordan sorry to here about this, sucks doesnt it?! I believe it’s a long road to get better (we are talking years) but it can get much better.

I’ve found Amitriptyline to be excellent. It’s very good for motion tollerance eliminating nausea. Perhaps if you are not satisfied with your med you could try it? Though others have found success on your med.

#3

Hey Jordan, So sorry this has hit you too. It seems more common than we might think, if that’s any consolation. I have managed to recover pretty well on magnesium, feverfew, and CoQ10. https://www.drweil.com/health-wellness/body-mind-spirit/headache/migraine-headaches/
My most important advice is to try to read this website and try these supplements in different combos (St Johns Wort has also helped me)- gabapentin before that but not as well as natural supplements ironically- to see if they work for you IF medicine doesn’t work and you don’t like side effects from them.

I know I’ll never be back to 100% (the way I was before I got MAV in March 2013) but I do know how to manage it and learn how to outthink the condition, so to speak- as in, try to exercise to push down stress, enjoy things in life as much as possible, which ironically led me to meet my fiancee and get married since I became more open to people and slowed down rather than being so Type A. I try to limit stress, even though I’m back at a full time job. I just know when to turn off.

So there is good and bad that this condition brings. But overall I empathize so much because I know how hard it is, but the good news it that you found this site and know that you have vestibular migraine. You are young and your nerves are capable of recovering very well.

I recommend that you try to stay away from tyramine as much as possible; it is in most of my favorite foods (I love a glass of wine…) so sometimes I fall of the wagon, but then I pay for it with more dizziness, head and eye pressure and general anxiety the next day. It is known as a central nervous system stimulant and it dilates the blood vessels in the head. Keep on trying stuff until it works for you- almost everyone finds the the solution to get functional and enjoy life again! Liv

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#4

P.S. Someone I know got better from it on a mixture of nortriptyline (similar to ami) and zoloft. It just takes time to find your magic bullet. My theory is that feverfew and SJW work so well for me because they do something similar molecularly to ami or nort. Flowers and herbs are pretty incredible… I guess the basis for modern medicine.

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#5

There are so many things for you to consider. I hope you start with reading an article at this site: Vestibular Migraine Survival Guide 2014 I have found success by: taking Nortriptyline on occasion (for three months on occasion when I have had a major episode), no alcohol, caffeine, MSG and only small amounts of dairy, citrus, being aware of and reducing foods with tyramine, really staying hydrated (70 ounces of water and herb tea day), reducing head motion, and, for me, only small amounts of high histamine foods. They aggravate ear fullness and tinnitus. My doctor, an oto-neurologist at UCI Medical center, recommends B2, magnesium and feverfew. There are many good articles and books to read so I hope you can look at my resource page for the links. Too many to list here. There is much you can do but it will take a little while to wrap your head around everything. Good luck. (www.vertigotalesandtastes.blogspot.com

#6

Hey there,

I can’t really give you any advices because I am a newby is this whole thing too. Suffering for almost 2 years but recently found out its mav.
I just want to say that I am sorry to hear that you are suffering too from this awfull thing called mav. From all the search I have done online and within this group I do believe most of the people will find great relieve from symptoms, either by time, medication, supplements, lifestyle changes or a combo.
Take your time to figure out which path fits the best for you and your symptoms. And please keep sharing your experiences.

Take care

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#7

Thanks so much for the responses! It’s great to hear that things can get better with the right treatment. For now I think I am going to stick with the Verapamil and work hard on my lifestyle as described in the survival guide. I’m also thinking about experimenting with the feverfew, riboflavin and CoQ10. I think I’m also going to try a few “home grown” things I’ve thought of. It’s very dry and hot here in AZ so I bought a humidifier to put by the bed. I also found a migraine hypnosis app that I’ll probably give a try before bed each night. Thanks again for all the support and help! I’ll check in and let everyone know how things are going. Today was actually a pretty good day so hopefully that’s a step in the right direction!

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#8

Hi Jordan,

May I ask what type of vestibular testing was performed that led to your vestibular migraine diagnoses? Supplements do help some. I’ve found low Nortryptiline to be helpful with motion sensitivity. Good luck moving forward!

#9

Hi NY, he didn’t really do any testing. He said my history fit VM to a tee and recommended a trial of Verapamil to see if it helped. I wonder about that alot. The condition can be so severe at times, I think it would be kind of nice to make absolutely sure this is what I’m dealing with. I think it would help with peace of mind and definitively accepting this diagnosis so I can move forward to fight it. That’s one reason I asked if anyone knew another doctor that might be a little more responsive. I’ve tried calling him a few times to ask him these questions but I always get his PA and she just tells me to stick with the Verapamil. I did get a follow up appointment but it’s not until May.

#10

Hi Jordan, I can’t add anything helpful to what’s already been said, but just welcome you here and say that I have found both helpful information and comfort in knowing I’m not alone. I’m in South Africa and have never found a helpful Dr., so have gone the self help route with supplements and lifestyle changes. Doubt this will ever completely go at my age, but at present I seem to have it pretty much under control. Wishing you luck in finding the right path for yourself through the maze!

#11

Hi Jordan,

Did your physician find any abnormalities upon exam? Nystagmus or balance issues? Symptoms in vestibular disorders overlap. One can look like a migraine patient and upon further testing point away from the diagnoses. My physicians were alway hesitant to prescribe first and test later. It seems to be quite common from some posts that I have read.
I hope the verapamil provides you relief from your symptoms.

#12

Hi NY, there were no abnormal physical exam findings as far as I know. I think it was just the history that convinced him. I have a personal and family history of typical migraines with aura, and I have always been pretty sensitive to motion.

#13

Sorry to hear your diagnosis.

Have you ever experienced migraines or headaches before?

One of the simplest things you can do is try to reduce triggers. Triggers can be anything from salty food, to bright lights to mold to humidity to changes in air pressure. For me traveling in an airplane actually improved my symptoms. The lower air pressure seems to help me.

I was previously diagnosed with a cerebellar brain tumor that is chiefly responsible for my issues. I am starting to gradually improve over four years. So yes it is possible to get better.

For me, the single best medication I’ve tried is low dose aspirin, which I only tried after about 4 years, d’oh!! Sadly after about a week the aspirin wasn’t as effective. Maybe I need to up the dose? Next would probably be 12.5mg effexor (still trialing) and then oral decongestant and nasal steroids. However, unfortunately, none of these have brought me back to 100%

As I mentioned I was diagnosed with a brain tumor. I have MAV like symptoms but the cause may be different.

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#14

Hi Cerebellar, I did have migraines previously, but they were nothing like this. Maybe once every 3-4 months or so I would get the classic migraine where I had a visual aura that lasted about 30 minutes or so. This was usually followed by a little nausea and headache. These were so rare that it really wasn’t that big of a deal.

What’s interesting about the vestibular migraine is I don’t have any sort of aura. Another big difference is the vestibular migraines don’t seem to have much of a fixed start and end point like my old migraines. It just seems to be varying degrees of crap throughout the day. I finally heard back from my neurologist and he wants to check an MRI and vestibular testing so I guess we’ll see where that goes.