Help!

I’m so happy that I found this website and this discussion board. As soon as I read the opening description of MAV I almost cried because I finally knew that there were other people out there who felt like I did. I’ll be quick with my story and then get down to my plea for “help!”. My symptoms started in May of 2008 with bad, non-specific headaches…not really migraine-like not really tension-like. The dizziness started soon after. I visited with PCP who told me it was a sinus infection, then went to a very nice ENT who did all of her testing and said she suspected migraines. I was of course very skeptical b/c I have never heard of anything like this before. I waited 10 weeks to see a “top” neurologist who shrugged her shoulders and said “maybe its a virus.” She did give me a better blocker (Nadolol) which seemed to help a little with the dizziness, but the headaches persisted. No migraine abortive (Amerge, Zomig) seems to make a difference. At the same time, I started having vision issues as well. Have been to the eye doc three times in the past few months and each time my prescription has changed. My neuro put me on Vivactil and at like the third day I got so dizzy, I fell over and basically freaked out. Went to see them again a few weeks ago and b/c of the passing out…now they are looking at POTS…what?? Postural Tachycardia Syndrome. Went for the tilt-table test and was super nervous…I know my heart was racing when that table went up…so it will likely show tachycardia. AAAAHHHH! I know that I have MAV symptoms and the symptoms have been consistent for the past 5 months. Had it not been for the passing out (from the meds) they wouldn’t even be looking at POTS and now I feel we are going down a road far away from the road that will actually help me. I am tempted to print out articles about MAV and show them to these doctors. Has anyone else had a similar experience/diagnosis. The anxiety and stress from all of this is seriously so overwhelming…my nerves are a mess. I have a two year old who needs her mommy back :slight_smile: Any advice is greatly appreciated!

Hi Colleen and welcome to the site.

I had a similar experience when finding this site. It was a feeling of, after two years of being bed ridden with “who the hell knows what” - THIS IS IT! I KNEW what I had - now i had just had to find a doctor to treat it - and that was my quest.

I had so many vision problems, i thought i would go blind. It was migraine aura.

My big crash happened during a viral episode so it was all blamed on a virus and “would hopefully go away.”

You said you’ve seen a top neurologist. I guess you need a top neuro-otolaryngologist. they are the specialty that knows MAV best - if you truly think that is part of your illness picture.

If you want articles to take to your doctors, there are two great sources, one is Timothy Hain, M.D.'s website, just do a google for his name. The other is real easy to find, it’s on the main page of this forum. Adam and Scott have put together a library of great articles regarding MAV. Scientific articles that have been published in respectful journals. you will be well-armed with those in your pocket-book.

be well Colleen, and again, Welcome.

Julie (about your baby, i feel for him/her, it was hard enough on my husband :cry: )

If you do have MAV, there are a couple of simple things that can help until you get an official diagnoses. Get yourself on a regular sleep schedule, avoid stress, and diet.

Diet is the hardest one, and unless you get immediate reactions from some foods, it is hard isolate the foods that are causing problems. You can simply do an internet search under migraine diet to find what is recommended, and you will find that it is suggested to eliminate almost everything from your diet. Here’s the hardpart, once you have removed everything that is suggested, you stay with that diet for a couple of months. Then you SLOWLY start adding foods back in, preferably journalling what you have added back in and how you feel from day to day.

Once you get an official diagnoses, they will probably prescribe migraine prevention medications. It sounds like that has been tried once already, but there are many different meds that can be used for migraine prevention, you just have to keep working with the doctors until you find one that works for you.

Brian

Yesss, I have been through what you are. Hang in there. Because none of these illnesses, mav, meniere’s ect, show up on a simple test. They almost have to test you for everything that has the same symptoms and rule things out as they go along. I dont know what kind of medical plan you have, but don’t be afraid to change doctors. It took almost two years and 8 doctors before I was diagnosed. I changed from two specialist because one said I was a woman in the man’s work force that couldn’t handle the stress, and one said that my hearing loss was due to old age(I was 43 at the time!!!). So anyway…don’t give up stay strong. And find a doctor that you’re comfortable with and really listens to you.

                                    coasterett (Lori)

Well, the nurse from the neuro’s office today called and said I had a positive tilt table test (for POTS) and she was sending me some things on how to add more salt to my diet. What??? I told her I was extremely nervous during the test and I wasn’t surprised that it was positive…my doctor is supposed to call me. I truly don’t feel like this is it. I know it has something to do with me head and MAV makes so much more sense. We wouldn’t even be looking at POTS if I hadn’t passed out from the med I was taking…I feel this is another step back for me. I don’t know what to do.

Can you find a neuro-oto in your area. If you think you have MAV, that’s who will diagnose it.

Colleen

When I went to my first neurologist, he told me that he thought there was somthing wrong with my stomach and sent me for an Endoscopy (yuck!) because I suffer from chronic nausea as well as dizziness. I knew in my gut (no pun intended) that this wasn’t the problem, so I asked my GP to refer to a neuro-otologist immediately for a second opinion, who diagnosed MAV.

I can’t advise you on what to do, but I’m so glad I didn’t wait around for the 10 weeks for an Endoscopy which wouldn’t have told me anything anyway; the problem is in my head not my stomach (I mean literally in my head, not in my imagination :slight_smile: ). Just follow your instinct to decide what you need to do.

Incidentally, I went for the endoscopy and guess what - it came back clear.

Becky x

Talked to my doctor and she actually was very cool. She is a nice person but I just don’t think she was getting the whole picture and I think I got through to her … this time. I told her my hesitation with the whole POTS thing and she seemed to think what I was saying made sense. Then I brought up MAV and she said it was definitely a possibility. So she is going to try me on Verapramil 120 mg and we’ll see how it goes. Any advice with this med? Usually I am pretty sensitive to meds although I did okay with Nadolol.

BTW, thank you so much already…you all have made me feel better with your words of encouragement :slight_smile:

— Begin quote from “colleen77”

…So she is going to try me on Verapramil 120 mg and we’ll see how it goes. Any advice with this med? Usually I am pretty sensitive to meds although I did okay with Nadolol. …

— End quote

It seems to be that most of us, not all, are sensitive to meds. This is one of the more common meds that people are taking on this forum and hopefully, someone will come be with some self experience with this med that may be benificial to you. I personally take a different med, so I am of no help with this one.

Brian

Colleen-

I can’t give you any personal experience with verapamil, but I know that many have had success with it.

The most important thing to remember is: If you don’t do well with it, don’t be discouraged. It takes many of us a very long time to find what works. The object is don’t give up (hard to do I know). Someone posted a list of MAV meds (a mile long), I’ll see if I can find it and pull it up.

Kim