Vestibular Migraine

I just logged onto this site as a recommendation from a doctor I saw at Johns Hopkins. I was recently diagnosed with vestibular migraine after several misdiagnoses for my chronic daily dizziness of the past 5 months. I picked up a book written by a colleague of the doctor that I visited called Heal Your Headache - by David Buchholz. He directed the Neurological Consultation Clinic at Hopkins for 14 years, has seen thousands of dizzy patients, and shares a wealth of information for headache/dizziness sufferers, including a 3 step plan for headache and other migraine related symptom control and relief. I’ve learned alot from the book and thought I’d pass the info on.

Hi Lisa

Welcome to the forums. I’m really glad that a doctor was able to recommend this site to you - that’s very encouraging. Many of us have read Heal Your Headache and recommend it widely, reading it is such a revelation to so many people when you don’t connect the bizarre symptoms you’re suffering from with migraine. Then it all clicks!

How are you going with the treatment program yourself?

Regards
Adam

Hi there, I’m a newbie to all this dizzy nonsense and would love any info that might help. I’ve read and reread Heal Your Headache (sometimes I just need to go over it again to make sure I still believe it’s what I’ve got!). I’m in the diet phase and have been following it for 7 weeks now. I haven’t seen much if any improvement. I’m still dizzy every day to varying degrees. Most days I function fine, just don’t enjoy it very much. Every now and then I have a day where I just need to sleep and have someone drive my kids to school. Has anyone had success with diet alone? They told me that 85% of people have relief with just the diet if they stick with it and it may take up to 12 weeks to see results. I’ve only had actual vertigo 2 times, last time in April. But since then I’ve had non-specific dizziness every day. It’s a drag!

1 Like

Lisa,
I’ve followed the diet–except I still drink a cup of coffee/day–for over a year. It’s helped, but I also take daily medications, and migraine supplements–magnesium, fish oil, coQ10 and riboflavin. I’m better, but still have some rough days. I think the diet helped a lot. Another thing that I find important is staying hydrated.
Good luck and I hope you feel better.
Step 3 is preventive medications. (Step 1 is to stop over using acute medications and step 2 is the diet.) So, even Buccholz admits that many people will need the third step.
Kira

1 Like

Lisa, i have an appt to see a doc at Hopkins in January - it is taking me that long to get in. Would you mind telling me who you saw and what tests he made you do? I’m not sure how they diagnose vestibular migraine.

1 Like

Kira, thanks for your help. I’m glad the diet seems to help. I tried some supplements, Migravent, which is Magnesium, Feverfew, Butterbur and Riboflavin (which they’ve replaced with CoQ10) and I also took CoQ10 and something else called 5htp, all shown to help with migraine symptoms. I started these supplements about the same time as the diet. When I began getting migraine headaches I called back to Hopkins and was told to go off all supplements and just do the diet. So I did. And that’s basically where I am now. Just waiting…

Julie, I called to make my appt. in June and the doctor wasn’t even taking new appts until October. I happened to get in on a cancellation in August. Try calling and getting on their cancellation list, you may be able to get in a little sooner. I saw Dr. John Carey - absolutely great guy. Spent about 1/2 hour with me giving me so much info about this thing. He recommended getting the book Heal Your Headache by Dr. Buchholz, which I did, right away. I would highly recommend it so that you’re armed before you even go in. You could even start on the program and see how it works for you. The only testing they did was an ENG - they monitor your eye movements while you follow red LED lights and then squirt water in your ears, it’s not bad and any dizziness resolved within a few seconds. They’re looking for neurlogical symptoms. Rest assured, you’re going to one of the best places in the country. They see thousands of dizzy and headache patients. They will not look at you and say they’ve never seen this before! I’m sure you’ll get help no matter who you see. It’s an excellent facility, we (my husband and kids and I) had a wonderful experience the two times we went down, once for testing, once for the consult. They totally have their act together and will get you through the whole experience very well.

Lisa, thanks for the input. i also have an appt with Carey in January. I’m told he’s the absolute best. So it didn’t take him long to figure out this was migraine? I’ve seen a local neurologist and otolarygologist. I mention migraine to both of them and they look at me like i’m a freak.

My appt in January includes one visit, testing and consult right after the tests are done. i’m assuming he will have the results of the tests in his hands during this consult.

what area are you coming from? The reason I ask is, my situation is so bad, and deteriorating, that I decided to see someone more local while I wait: JFK Neurosciences Center in NJ. They are supposed to be excellent - have you heard of them?

If I’m not happy there, i’ll keep my appt with Hopkins in January, and yes, i am on a cancellation list :slight_smile: although she told me they were few and far between - sounds like you got lucky!

Thanks again for the input, getting educated is half the battle in finally getting to the right diagnosis and treatment.

So a normal ENG has no correlation to migraine, correct - does not rule it in or out? and same for an abnormal ENG - there is no correlation with migraine? Just gathering more info.

Regarding Buccholz book - i have it and I’m on my second week of the diet. I think it’s a GREAT book for anybody with headaches. I’ve got my husband on the diet too!

Julie

Julie,
They have a really nice description of MAV: which they call otic migraine, and they list the many medications that may be needed to control symptoms.
I understand that they didn’t want to confuse the issue with the supplements. The easiest one to add is magnesium. If they do work, they can take a few months to work.
Here’s the Hopkins URL
hopkinsneuro.org/vestibular/ … r_Migraine
Kira

1 Like

Julie,

Sorry this has taken me so long. I’ve been too dizzy or busy to get to e-mail lately! As far as ruling migraine in or out I’m not sure exactly how the ENG figures in except to rule out anything that might be neurological instead. And they may put you in the rotary chair - one that spins while they monitor your eye movements, not fun but at least it helps in the diagnosis. I did not have to do that because of the ENG results. The technician will make the call based on what they see. A friend of mind had to do that but she said that the dizziness subsided quickly after the test was over.

Anybody out there please correct me if I’m wrong, or add whatever I may have missed, but here’s what I understand from my experience.

When they do the ENG they monitor your eye movements during a series of tests which include following red LED lights vertically and horizontally, and introducing water into each ear seperately - cold then warming to almost hot (but not uncomfortable) and then in reverse - hot to cold, with your eyes closed. They do this to see that you have the same response bilaterally. This test would make anyone dizzy - I asked. So getting dizzy is a good thing (believe it or not!) If there was no response to one side being prodded it may indicate another diagnoses.

Dr. Carey diagnosed me based on my ENG there as well as the medical history from my ENT and neurologist and an MRI that I had done locally. He was very gentle and calming, extremely knowledgeable and very sure in his diagnosis. He was in the room with me for 2 minutes before telling me that I did not have viral neruonitis, labryrinthitis or Menieres - all of which I had been told may be the problem.

I have to agree with Dr. Buchholz that doctors simply aren’t educated enough with this - but that’s why we see specialists! A woman from our church was diagnosed with VM and called me because she knew that I had been having these symptoms. When she explained to me what she was going through it was identical to what I was dealing with. She had gone to Penn and finally to Hopkins and put on treatment. However, when I told my ENT and neurologist about it they weren’t convinced. The neurologist said I wasn’t classic for vestibular migraine because I didn’t have headaches. Dr. Carey said it was a common mistake and that I was absolutely a classic, text book case.

I would go to the NJ clinic if I were you simply because you may get relief sooner. I think that’s really a wise decision. One thing a friend of mine told me, and my neurologist agreed - at Hopkins, or anywhere else that deals with this on a regular basis - they are not going to look and you and scratch their heads and say “wow, I never saw this before”! So rest assured and keep pressing on with your quest for a correct diagnosis. We have to be our own health advocates nowadays. If you don’t feel that your practitioner can help you then definitely seek out one who can.

Lisa,

thanks again for the input - this is really helpful.

I did get a dx of VM from the guy at JFK. He was so certain he didn’t even request an ENG. I’m already on the diet, which he didn’t mention at all - he went straight for the meds. He put me on Zoloft, to start. When I asked him what his next choice would be he said Topomax, which I wasn’t pleased with. I’m still considering going to Hopkins for my treatment plan.

Here’s my question to you, Lisa. Now that you have a Dx from Hopkins, how do proceed? Do they manage your case long distance? Do you need to see them intermittently, or do they pass the management on to your PCP?

Hopkins told me on the phone that once they made the diagnosis, they would expect my PCP to manage it but that would be impossible unless Hopkins educated them about what meds to try, etc.

Thanks for any input. I was happy with this guy’s evaluation, i’m just not sure i’ll be happy with his management.

Hope you had a pleasant day :slight_smile:

Julie

Hi Julie,

I just logged in again and saw your question. For the present, I’ve been calling Hopkins if I’ve had a problem - like today, I had the first bout of vertigo in 6 months. I called and left a message for them. When I’ve done this in the past the PA for Dr. Carey pulls my file and calls me back. She’s very nice and helpful and listens to all of my concerns. I was wondering myself, just today how will my local neurologist manage this without being educated enough on the subject himself. I’m assuming that in the letter Dr. Carey sent to my neurologist, he would have outlined his treatment plan and my guy will just need to act on that. I know that if the diet did not help within about 12 weeks that they were going to try me on diltiazam. With only 3 weeks left to go on the diet (to reach 12 that is) and no great improvement I’m ready for the next thing. I guess my neuro can monitor me on the meds but if I have an issue I would definitely call JHH. On my first visit Dr. Carey said he wanted to see me back in 6 monts if I wasn’t feeling better. I have an appt. scheduled in Feb. I intend to keep it because I still have some questions and a half-hour with him will lead to alot of wisdom being imparted. I’d like to give the Heal Your Headache to my neuro (and ENT for that matter) but don’t know how to do that without it being weird - like you don’t know enough so go get educated. He’s a really nice guy and really wanted to help me. He just does not know the big hairy monster that migraine is. I’ll probably take the book in with me when I make a follow up appt. and just let him take a look at it. He doesn’t seem adverse to learning about it. Maybe he’ll be greatful for it and it will help some of his other dizzy patients who are on large doses of valium and just coping. That is just a shame!

Hi Lisa,

And thanks for the input - it really has been invaluable in helping me decide the course i will take. You know, you can ask for a copy of the letter that Carey wrote to your neurologist. Then you’ll see if he actually made suggestions for treatment. I do that all the time - i like to have my own records or all my labs and letters, etc.

I think I could easily approach my PCP with Buccholz’s book, the problem is that although he does give suggestions regarding which drugs to try first, he doesn’t give any advice on dosages, increasing or decreeasing dosages, etc. The book was definitely written for the layman.

I like the Hopkins approach of ruling out diet factors first, so you can start with a clean plate before adding meds. My guy at JFK started me on Zoloft and if it works i won’t know if it was the Zoloft or the highly restricted diet i’m on.

The other thing i like about the Hopkins approach is that they are going to start you on Diltiazem, something that should be easier to tolerate. My guy went straight for Zoloft and he said the next thing he would try would be Topamax. If we get that far, I will definitely ask him why he’s skipping the calcium channel blockers.

If you ever find out if Carey included a treatment plan in his letter to your neurologist, I would love to know - that would mean he is willing to help educate your doc and that would be great!

As always, thanks for the input - getting through this maze has been rough and any clarification is so helpful.

You stay healthy and keep me posted on your progress.

Julie

Hi Julie,

Thanks for the advice. I will call my neurologist tomorrow and ask for a copy of that letter. His office called me after they got the letter and wanted to make a follow up appointment. I haven’t done that yet. Now I am more motivated. I assumed he wanted to talk about my visit there and what I found out. Kind of didn’t want to part with a co-pay just to “touch base”. But he may have a treatment plan and I should follow up on that. I’ll let you know!

Lisa

i’m not sure, but i think you need to get a copy of the Carey letter from Carey’s office, not from the neurologist he sent it to. I do it all the time, but I always call the office that is actually sending the letter. The receiving office may or may not have permission to send copies. Good luck and keep me posted :slight_smile:

Hi Julie,

It’s been a while but I’m finally getting back to checking in on the forum. I followed up with my local neuro - did get the letter, thank you! He followed Dr. Carey’s advice and put me on diltiazem, a calcium channel blocker. I was on that for 3 weeks but it only made me more dizzy when I was driving and lying down at night. My neuro told me there are 2 schools of thought; increase the dosage and see if the side-effects subside and the med kicks in to settle the dizziness, or discontinue and try something else. He opted for option number 2 - he said he was concerned about the safety issue of me driving while dizzy. He is going to start me on an antidepressent, nortriptylene (sp?) after a couple of weeks of getting back to base line to make sure I haven’t developed any other symptoms. I called Hopkins to update them and see if that course of action is ok with them. It is and they are absolutely fantastic about answering questions and putting your mind at ease. I was told “don’t give up hope, there are so many treatment options out there.” When I told Dr. Carey’s P.A. Nancy that sometimes I just feel like this is my new “reality” and that I’ll never get better (in a quivering voice!) she was so compassionate and reassuring. She told me that althought it feels that way now, that I will definitely experience relief. That I WILL stop being dizzy and that although I may experience “spells” from time to time that there is a treatment that will work. It just takes time and patience to find the right med at the right dose. She said for VM it often takes high doeses of meds to work. I don’t care what they put me on - antidepressent, hypertensive drug, or 25 all natural supplements, I just want relief. They’ve seen thousands of patients like us and I believe they really know what they’re talking about. I go back to see Dr. Carey in January, 6 weeks after being on the meds. That’s the minimum trial period they like to give a med. So hopefully on to better days! I hope you’re getting relief. Where are you in the process now?

Lisa D

— Begin quote from “Lisa D”

Hi Julie,

It’s been a while but I’m finally getting back to checking in on the forum. I followed up with my local neuro - did get the letter, thank you! He followed Dr. Carey’s advice and put me on diltiazem, a calcium channel blocker. I was on that for 3 weeks but it only made me more dizzy when I was driving and lying down at night. My neuro told me there are 2 schools of thought; increase the dosage and see if the side-effects subside and the med kicks in to settle the dizziness, or discontinue and try something else. He opted for option number 2 - he said he was concerned about the safety issue of me driving while dizzy. He is going to start me on an antidepressent, nortriptylene (sp?) after a couple of weeks of getting back to base line to make sure I haven’t developed any other symptoms. I called Hopkins to update them and see if that course of action is ok with them. It is and they are absolutely fantastic about answering questions and putting your mind at ease. I was told “don’t give up hope, there are so many treatment options out there.” When I told Dr. Carey’s P.A. Nancy that sometimes I just feel like this is my new “reality” and that I’ll never get better (in a quivering voice!) she was so compassionate and reassuring. She told me that althought it feels that way now, that I will definitely experience relief. That I WILL stop being dizzy and that although I may experience “spells” from time to time that there is a treatment that will work. It just takes time and patience to find the right med at the right dose. She said for VM it often takes high doeses of meds to work. I don’t care what they put me on - antidepressent, hypertensive drug, or 25 all natural supplements, I just want relief. They’ve seen thousands of patients like us and I believe they really know what they’re talking about. I go back to see Dr. Carey in January, 6 weeks after being on the meds. That’s the minimum trial period they like to give a med. So hopefully on to better days! I hope you’re getting relief. Where are you in the process now?

Lisa D

— End quote

Lisa,

Wow, you sound like you are at the same desperation point that I was at a couple of years ago when I was finally dx’d. It is good to hear that you have a very supportive medical staff that is willing to work with you. The first doctor (same one who mis-dx’d me with meniere’s) used to simply say, “you have meniere’s, get over it and learn to deal with it.” There is a good reason that I don’t see him anymore.

Brian B.

Lisa,

It’s great to hear from you. I got my dx of VM and my doc started me right on Zoloft. He claims to have cured hundreds of people with it and thought it would be good for me. I have had definite improvement, which, although i have a long way to go before I would even consider driving, let alone walk to the mailbox :slight_smile: feels great! I’m having trouble increasing the dose without some strange psychological symptoms, so i’m titrating at a snail’s pace.

I talked to Nancy before making my appt at Hopkins - she is GREAT isn’t she? I may still keep my appt with them in January - it sounds like it would be nice to have a back-up opinion on the course your doc decides to take.

Right now, i’ve already started negotiating the next step, in case i can’t get my dose of Zoloft high enough to get a real “cure.” I can’t do BB’s or CCB’s because my heart rate is around 55. That leaves the anticonvulsants. For some reason, my guy (who trained with Buccholz ten years ago, at Hopkins) is of the opinion that Keppra and Lyrica are for headache symptoms and not dizziness. He is totally sold on Topamax for dizziness, but since it is a given that i will have troublesome side-effects with any med, i would rather try the more tolerable anticonvulsants first. I think he is wrong and i would love to get that input from the Hopkins people. So, i’ll probably keep my appt., just so i can bounce these things off of them. (when I mentioned I had had discussions with Hopkins P.A.'s my doc’s ears definitely perked up - he knew he was talking to someone who had done some research.

I know how you feel - i am often convinced that i am afflicted for the rest of my life, and then i increase my dose of Zoloft and experience additional relief and i get real hopeful again.

Thanks again for sharing your Hopkins experience - it convinces me more and more that i need to make the trip down there.

You take care and keep me posted. (Happy Thanksgiving!)

What meds do they suggest