New and possibly diagnosed with MAV...help please!

Hello,
Thank you for reading my post and was very happy to find this site. I was recently at the neuro-oto and he believes I may have MAV. Four years ago I started having the dizzy feeling and had all the tests done. MRI, blood tests, CT scans, ENG’s all came out normal. He perscriped me a very low dose of verapamil at that time and I did not see a difference in my symptoms. I was only on 40 mgs, which by reading these posts seems very low. Anyway, after that I was given another low dose of valium which seemed to help me get over the symptoms. Within the last four years, the dizziness has come and gone about 3 times, each episode lasting about 3-4 months at a time, with no clear cut diagnosis and/or treatment. The dizziness eventually just fades away. It feels as though I have spun around a few times and the dizziness just never wears off. My doctor says that this pattern of going away and coming back could certainly be MAV, and am on verapamil again, titrating up to 120 mgs. a day. I still haven’t seen an improvement. Other symptoms include visual things such as seeing “rain” or “sparkles” if that makes sense. I do not have any “typical” migraine headaches although I remember having about 5 as a child. I remember I would see an aura and then a bad headache would come along. Anyways, I also have extremely bad anxiety with dealing with this 24/7 dizziness.

Does this sound live MAV??
ANY suggestions, input,or related stories, is GREATLY appreciated!!! My doctor said verapamil is one of the best migraine preventative medicines and I am a little scared that is not working.

The visual stuff sounds like migraine for sure, I get tadpoles, half moons, black lace, light droplets (really pretty!) and of course, the standard zig zag that starts as a small zig zag in the centre of vision of one eye and moves slowly to the corner as it gets bigger then disappears after 20 minutes (this usually heralds a stinker)

— Begin quote from "kaylie444"

Hello,
Thank you for reading my post and was very happy to find this site. I was recently at the neuro-oto and he believes I may have MAV. Four years ago I started having the dizzy feeling and had all the tests done. MRI, blood tests, CT scans, ENG’s all came out normal. He perscriped me a very low dose of verapamil at that time and I did not see a difference in my symptoms. I was only on 40 mgs, which by reading these posts seems very low. Anyway, after that I was given another low dose of valium which seemed to help me get over the symptoms. Within the last four years, the dizziness has come and gone about 3 times, each episode lasting about 3-4 months at a time, with no clear cut diagnosis and/or treatment. The dizziness eventually just fades away. It feels as though I have spun around a few times and the dizziness just never wears off. My doctor says that this pattern of going away and coming back could certainly be MAV, and am on verapamil again, titrating up to 120 mgs. a day. I still haven’t seen an improvement. Other symptoms include visual things such as seeing “rain” or “sparkles” if that makes sense. I do not have any “typical” migraine headaches although I remember having about 5 as a child. I remember I would see an aura and then a bad headache would come along. Anyways, I also have extremely bad anxiety with dealing with this 24/7 dizziness.

Does this sound live MAV??
ANY suggestions, input,or related stories, is GREATLY appreciated!!! My doctor said verapamil is one of the best migraine preventative medicines and I am a little scared that is not working.

— End quote

I would strongly recommend getting the book “Heal Your Headache” which has a lot of good information in there about what causes these symptoms and what triggers these “headache symptoms” .

Many people have found relief by following the strict diet regiment he talks about in his book. Though it takes some discipline it also is worth the effort to try and make the circumstance manageable. I think most here would also agree that getting enough sleep and the same time each day is very important in combating this disease. Plus reducing the stress , which we all know is easier said than done at times but is needed in order to reduce symptoms.

Also for me making sure I drink enough water has been very helpful.

I have no experience with verapamil so I cannot speak as I am very med sensitive so I have not found a medication that is or has worked to effect this but through major lifestyle changes things are getting better.

There are many on here who have had this a lot longer than myself and can tell you their stories and what has worked for them.

One thing I have found is sharing with others is very beneficial and helps us all understand and to never give up searching for answers.

Hope you find an answer that works for you, don"t give up and keep searching and asking questions as that is how we all learn to cope.

Tammy

Kaylie,

I am sorry to hear about the MAV diagnosis. You suffer from the same symptoms I do. I started on Verapamil on December 18th. I too had a lot of tests done. I started with this about 8 months ago. I am not getting headaches (thank God!) but I do suffer from cluster migraines in the spring. Currently, I am up to 3/4 of a Verapamil capsule with no side effects. I was sure this medicine was not working until about 4-5 days ago. Everyone on this forum told me to give it time and they were right. It took about 3 weeks to notice a difference. I am now going places again. I still have anxiety that it will come back. I still have anxiety when I am at the stores and malls. I am way better than I was a month ago. I see Dr. Hain for my MAV. He made the diagnosis and has valuable info on his website. I took everyone’s suggestion and read Heal Your Headache…(even though I’m not suffering from headaches). You should read that book, it is soooo helpful. I am trying to get more sleep, keep a regualr schedule to bed by 10:30, up around 7:00 a.m., no caffeine, taking vitamin D, fish oil, and vitamin B complex. I’m trying to watch my diet and avoid possible triggers. (stress is so hard to avoid) That book speaks a lot about dizziness. How long have you been on the Verapamil? I hope you feel better soon. I really know what you are going through. I believe this has to get better. I want my life back. I’m trying so hard to overcome this. The people are absolutely wonderful on this forum. They have helped me a ton!

  • Nance

thank you for your prompt replies.

Nance,
I have been on the verapamil for about a week and a half, im titrating up to 120 mgs in the next few days. Do you have the 24/7 dizziness feeling? How would you describe your dizziness?

Thanks

Kaylie,

My dizziness too was 24/7. I would just break down and cry because of it. I felt hopeless. I would watch others enjoying themselves and wonder if I’d ever be"normal" again. I had a “fullness” and/or heavy feeling in my head. I felt as if I had just gotten off of a merry-go-round (things were not constantly spinning). I just felt dizzy in general. I would also get the feeling that I was falling but I wouldn’t fall. I would feel as if I was walking on a boat dock. My footing felt strange. I would get dizzy sensations if I looked down or to the side at times. I even had a “rocking” feeling when still. Believe it or not, about 3 weeks into the Verapmil, I woke up and felt almost normal one day. The next day was good too. Now I am at the point where I feel almost myself. I hope it lasts. My motion sickness has pretty much left. Before I felt very motion sick. Right now I am battling with the fear of it coming back like before. That is where my anxiety plays it’s part. I do feel it when I get anxious/nervous. Dr. Hain’s office told me that the MAV would not get back to that point since I’m taking the Verapamil. Oh, before once in awhile I would get complete vertigo, for me it was horizontal and vertical movement that lasted only minutes. It freaked me out though. I really believe in the Verapamil at this point. I think the chances of it helping you are good. I want to think this MAV can go away. I have to keep thinking that. I may not have thought that before, but I do now. My family doctor told me it takes some people longer for the medicine to work. He said it could take up to two months for the full effect. I hope the dizziness leaves you. I believe it will. You are in my prayers. - Nance

Hi:

Many of us have had the same experience and it has reached a peak where it is 24/7 and extremely frightening. That is when you tend to wonder if you will ever get better and everything feels hopeless. Well, things do get better. The right doctor and the right medicine and diet can really help. It does not always happen overnight but if you are persistent, you can find some answers and start getting the proper treatment for your specific needs. Get lots of rest and try to keep it on a regular schedule, and try to control stress. I realize that having this is stressful, but once you begin finding some answers you will start to gain some confidence and may begin to realize that there is hope. Even going to a massage therapist can be beneficial. I get a lot of tensioin in my neck and upper back, and that contributes to my headaches and dizziness; so I go to a massage therapist regularly, and that really helps me. A moist heating pad also relieves tense muscles at the end of the day. And, be careful about what you eat. Find out which foods are common triggers for migraine sufferers and then keep a food diary to discover which of those seem to trigger headaches or dizziness for you. It can happen immediately or the next day, so be observant.

We have been there, so know that you are not alone…

Karen