Hi everyone,
I just wanted to say how relieved I am to have found this site. It’s nice to know you’re not alone or crazy. For over two years, I’ve been struggling with what I now know is MAV. It started almost out of the blue soon after moving to New York City. I had a pretty stressful job (fashion industry) at the time and am still wondering if stress could have triggered this. I’ve just read some of the stories on this site and mine is similar in a lot of ways. The first doctor I saw said I was just stressed out and gave me xanax (which I never took) I knew the only reason I was anxious was because I had a constant feeling of dizziness and a 24/7 feeling of being on a violently rocking boat. I also had almost constant pain in my neck and shoulder blades. I then continued on to:
-an osteopath who didn’t help at all
-a chiropractor, who treated me for 9 months and would relieve the symptoms for a day or two, but it always came back. She said my C1 and C2 vertebrae were very out of alignment. Does anyone else on this board have this problem with constant neck pain on one side of the head?
-an ENT, who gave me hearing tests and told me he didn’t think I had meniere’s disease, but didn’t know what it was, so he sent me to NYU’s vestibular rehabilitation program. I went through the 4 month treatment (where the therapist was sure I had a vestibular problem) but it didn’t help at all
-a physical therapist, who treated me simultaneously to the above, with no success
-an orthopedic surgeon who took many x-rays as I have scoliosis and he concluded that it had nothing to do with my dizziness.
-I was diagnosed with MS, and told I might have had a brain tumor at various points which was totally frightening.
This entire time, the “disorder” had totally taken over my life. I was only 28 and was very active and went out to parties almost every night before this happened. I had started to become a shut in as the anxiety also got worse as the symptoms got worse. I couldn’t take time off work and was forced to work 10 hour days while I thought I was dying. I am from Canada and never was sick while I had the option of free health care. I think all of you probably know how horrible the US health system is if you don’t have full insurance coverage. I spent a small fortune dealing with all of this.
Last Feb. I had to go to Las Vegas to launch a clothing brand. I can’t think of a worse place to be while having these attacks I had a breakdown and ended up in the hospital pretty much unable to walk. Finally, I was sent to the Neurologist at NY University Hospital and he was completely convinced that I had MAV. It was the first time I had heard of it and was pretty skeptical as I had never had a bad headache. He put me on Topamax, Lexapro (SSRI) prednisone, magnesium and naproxen. I stayed on the Topamax and lexapro for 8 months. In the meantime, I moved to Amsterdam with my boyfriend to try and simplify my life and take time off work. The drugs did help, but I never felt quite right and was scared of the side effects. This past Oct. I stopped taking them and have gradually gone downhill again. At the moment, I’m doing very bad and losing hope that I will ever live a “normal” life again. I’ve seen another neurologist, ENT and physiotherapist here in Amsterdam and feel like I’m no further ahead. I’m debating going on Topamax again, as it seems like the only option. Are any of you in Amsterdam or Holland? Do you know of any good doctors? Any suggestions of alternative or other drug treatments would be greatly appreciated.
Sorry I rambled on so long, I’ve never had a chance to talk to people who actually understand what I’m going through…
Just wanted to welcome you to the site! I know exactly what you are going through, I was 28 when this mess started (am now 29). It started very suddenly for me and before I became ill, I was extremely actve with a busy job and social life. Now, my social life is virtually non existent and I don’t work. Dont let that discourage you though, we are all going to beat this eventually!!
I too have the near-constant nexk and shoulder pain (under the shoulder blades particularly). This is a symptom of migraine. I am currently investigating whether this could all be caused by a jaw misalignment, which can also cause neck pain and apparently migraines. See link: migraineheadachepain.com/index.html.
I hope you find all the information you need on this site, if you don’t just ask! I’m afraid I don’t know anything about living in Holland though, I live in the UK.
you might want to check ou the book :Heal You Headache , which gives some good information about the fact that migrainges do not always mean “headache”. Plus there is a lot of information on what some of the triggers are and how you can if not cure your condition at least reduce it. I found it very useful in my travels of trying to figure all of this out.
Some of the things really take discipline and it may seem difficult at first but as bad as I felt it was well worth it. And it has helped my symptoms to at least be reduced, not cured but reduced which is a huge improvement over where I was six months ago.
I have issues with c5 and c6 disc and have been getting steroid blocks not sure if that has made any difference with the MAV but it has helped the pain in my neck.
There are a lot of supplements that may help also . I will let some of the others speak to that as they have been using them for a much longer time than myself.
Sleep, diet and exercise also play an important role. It for me at least , has required life style changes.
Girl9, welcome! I am fairly new here also. I still don’t have a firm diagnosis of anything after a year and a half of episodic vertigo and a lifetime of motion sickness, but MAV seems to me to fit.
Sounds like you have had a lot of testing. I also have neck issues, can’t rememter which vertebrea, but I know it isn’t 1 or 2. I haven’t yet talked with the doctor as to if this is a possible cause for my vertigo because most things I have read by the “experts” in the field say neck issues are rarely the cause of vertigo. I do have quite a lot of pain and discomfort though and am unable to crane my neck without major difficulty. My neck feels best when I am looking downwards.
The older anti depressants, such as elavil are often used with success for MAV. They supposedly work much better for this than the newer ones such as Lexapro. But everyone is different. I haven’t tried any of them yet but I am hoping to soon. I have an appt with a new doctor is a couple of weeks.
I hope you are able to find someone to help you in Holland. I’m sorry I don’t know any doctors over there, I can’t even find one in New York that can help me!
I can’t even find one in New York that can help me!
— End quote
nymag.com/nymetro/health/bestdoc … ndex1.html
Dr. Lawrence Newman
NEUROLOGIST
Newman is the director of the Headache Institute at St.Luke’s-Roosevelt
Hospital Center and attending neurologist there – and he’s also a
migraine sufferer.
1000 Tenth Avenue
New York NY 10019
Telephone:(212) 523-5869
Fax:(212) 523-5902
I can’t even find one in New York that can help me!
— End quote
nymag.com/nymetro/health/bestdoc … ndex1.html
Dr. Lawrence Newman
NEUROLOGIST
Newman is the director of the Headache Institute at St.Luke’s-Roosevelt
Hospital Center and attending neurologist there – and he’s also a
migraine sufferer.
1000 Tenth Avenue
New York NY 10019
Telephone:(212) 523-5869
Fax:(212) 523-5902
Maybe he knows MAV or can refer you.
— End quote
Thanks Heather. Unfortunately, I’m not even close to NYC but I am going to see if I can find an e-mail for his office and drop them a line to see if by any chance they know of someone near me.
I too have the near-constant nexk and shoulder pain (under the shoulder blades particularly). This is a symptom of migraine. I am currently investigating whether this could all be caused by a jaw misalignment, which can also cause neck pain and apparently migraines. See link: migraineheadachepain.com/index.html.
Becky
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Thanks Becky, for the kind words and info. I’ve also wondered if my jaw played a part with all of this. I have the pain on the left side of my jaw, my neck and my ear always feels full on that side. I just looked at the URl you attached and that doctor is near Detroit, Michigan and I’m actually going to my parents for Christmas which is right over the border in Canada. I’m going to see if I can get an appointment. I’ll keep you updated on what happens. Hope you’re doing ok…
How did a doc come to that MS conclusion? Lesions seen on MRI, lumbar puncture, what?
Did another doc since then refute the first doctor’s opinion?
Heather
Hi Heather, two different doctors said it seemed like MS, although eventually the neurologist who did my MRI said it wasn’t and was quite angry that other doctors had told me that with no real proof. He was the one who diagnosed me with MAV.
I hope you are able to find someone to help you in Holland. I’m sorry I don’t know any doctors over there, I can’t even find one in New York that can help me!
— End quote
Hi bookworm,
Thanks for the reply and sorry you haven’t been given a diagnosis. Not knowing what’s going on is the worst situation to be in. The doctor who diagnosed me was in New York City. His name is Dr. Gopinathan and is a neurologist at NYU hospital. 650 1st Ave # 4 New York, NY 10016 (212) 213-9559. I know you mentioned that you’re not near the city, but I’m pretty sure he does phone consultations.
Good luck and let me know if you speak with him. I’m thinking about doing a phone consultation, as I haven’t been able to find a specialist here in amsterdam.
Have you tried marijuana, as its legal over there. Some say it helps migraines. I have no idea though!
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Hey Mike,
Thanks for the feedback. I have considered it as a lot of friends do smoke, but have been worried that it might make things worse. In the past, when I tried it only made me paranoid…
you might want to check ou the book :Heal You Headache , which gives some good information about the fact that migrainges do not always mean “headache”. Plus there is a lot of information on what some of the triggers are and how you can if not cure your condition at least reduce it. I found it very useful in my travels of trying to figure all of this out.
Sleep, diet and exercise also play an important role. It for me at least , has required life style changes.
— End quote
Thanks Timeless,
I’ll look into that book for sure. I also have read that sleep, diet and exercise also play a role and have subsequently moved continents, changed careers and completely altered my lifestyle. Unfortunately, I’m still at the same place I was before. The only thing I haven’t really tried is changing my diet i a specific way. I’ve cut out caffeine and alcohol, and just try to eat healthy. My diet is pretty much the same as before the MAV started two years ago, so it seems unlikely that it would be the cause. Although, maybe I’ll give it a try…
you might want to check ou the book :Heal You Headache , which gives some good information about the fact that migrainges do not always mean “headache”. Plus there is a lot of information on what some of the triggers are and how you can if not cure your condition at least reduce it. I found it very useful in my travels of trying to figure all of this out.
Sleep, diet and exercise also play an important role. It for me at least , has required life style changes.
— End quote
Thanks Timeless,
I’ll look into that book for sure. I also have read that sleep, diet and exercise also play a role and have subsequently moved continents, changed careers and completely altered my lifestyle. Unfortunately, I’m still at the same place I was before. The only thing I haven’t really tried is changing my diet i a specific way. I’ve cut out caffeine and alcohol, and just try to eat healthy. My diet is pretty much the same as before the MAV started two years ago, so it seems unlikely that it would be the cause. Although, maybe I’ll give it a try…
— End quote
That doesn’t make it less likely to work at all, actually. Before this started, you weren’t sensitive to dietary triggers, but (since you are on this site!) you probably are now. I used to eat triggers like crazy before this started for me, with NO ill effects. Now I can’t tolerate any of 'em without having a very bad day.
On the bright side, my headaches did lessen in intensity from the diet. On the other side, they are more frequent - but I don’t blame the diet for that.
Ooh, let me know how you get on at that dentist! I’ll be really interested to know. Another member of our gang, Chaz, is also following this line of enquiry (see the thread entitled ‘A trip to the dentist’) so the more information we can accumulate the better!
I see Dr Lawrence Newman and he diagnosed me with MAV. He runs the Headache institute at St Lukes in NYC.I highly reccomend him. He runs a MAV support group 1 time a month.I am currently 95% on a drug coctail he prescribe4d of Nadfanol, Zoloft, Klonopin.I went undiagnosed for 3 years and I have been seeing him for years.The only relapses I ever had was trying to come off medication once as I was 100% and switching meds from Verapamil to Nadanol
I can’t even find one in New York that can help me!
— End quote
— End quote
Thanks Heather. Unfortunately, I’m not even close to NYC but I am going to see if I can find an e-mail for his office and drop them a line to see if by any chance they know of someone near me.
— End quote
I’m confused. Why did you say you can’t find one in New York to help you if you don’t live near New York? Or do you live in New York state, but far away from the actual city?
I didn’t doubt you about the use of pot for migraine. I was making a joke since you said “I have no idea though!”
Are you in the USA?
Years ago, when Bill Clinton was running for President, he appeared on the Arsenio Hall TV show.
Well, Arsenio asked Bill if he ever smoked pot. Bill said, “Yes, but I never inhaled.” Of course all of America thought, uhhhh yeah right Bill. Lol.
To this day, people still make fun of Clinton for saying that.
For over two years, I’ve been struggling with what I now know is MAV. It started almost out of the blue soon after moving to New York City. I had a pretty stressful job (fashion industry) at the time and am still wondering if stress could have triggered this. I’ve just read some of the stories on this site and mine is similar in a lot of ways. The first doctor I saw said I was just stressed out and gave me xanax (which I never took) I knew the only reason I was anxious was because I had a constant feeling of dizziness and a 24/7 feeling of being on a violently rocking boat. I also had almost constant pain in my neck and shoulder blades. I then continued on to: