New here...please need some advice!

I have been dizzy for the past several weeks. I feel like I am rocking and swaying all the time and I am imbalanced when I walk. I am currently undergoing tests to find out what is wrong with me. I now believe I have MAV. Will I be able to walk better as time goes on? Will this rocking ever subside? This is the worst symptom to have for me (swaying and rocking while walking).

If you do have MAV, it is treatable. Most of your symptoms will decrease or subside with the proper treatment. Treatment may be as simple as making life changes such as maintianing a proper sleep cycle or diet. It may require migraine preventative meds. It just all depends, eveyone of us is different, and require different treatment. Work with your doctor, and go through with all testing to reduce chances of misdiagnosing and improper treatment.

Brian

why do you think you have mav? In what situations do you feel better/worse?

My rocking has subsided since I have been on Verapamil (a calcium channel blocker). I didn’t believe it at first, but with lifestyle changes and medication, I am now having good days. Do not give up! You will feel better. This forum is a great support system. I could not have gotten this far without all my “MAV” friends. They are a wonderful group of people. I feel a lot better than when I first started with this in May 2008. Your walking will get better too.

  • Nance

Thanks everyone for your replies!

These have been the hardest weeks of my life. I am still not balanced when I walk and now I feel like I’m on a boat constantly when sitting. The only place I feel somewhat ok is when I’m in the car. I am so afraid I’m going to be like this for the rest of my life and I’m only 31 years old.

Does anyone have any alternative remedies that I could try? My husband and I would still like to have more children so I don’t if that is possible if I have to be on medication. We already have a two year old child.

— Begin quote from “dizzyinaz”

Thanks everyone for your replies!

These have been the hardest weeks of my life. I am still not balanced when I walk and now I feel like I’m on a boat constantly when sitting. The only place I feel somewhat ok is when I’m in the car. I am so afraid I’m going to be like this for the rest of my life and I’m only 31 years old.

Does anyone have any alternative remedies that I could try? My husband and I would still like to have more children so I don’t if that is possible if I have to be on medication. We already have a two year old child.

— End quote

I would recommend you get the book “Heal You Headache” and follow what he says to do in the book. you have to be very disciplined in following the diet and lifestyle changes he gives you in the book.

There are a few other things that I would suggest in order to help with your symptoms, these have worked for me . I am very med sensitive and have not really found a medication that works for me other than a very small dose of Valium .25mg a day.

  1. Go on the diet in the book and follow it to the letter. (At some time you may be able to add things back but to start with stay on it and do not cheat) Main things or me are caffeine, MSG, chocolate, food high in sugar. Been on low card diet for some time , plenty of chicken , fish and fresh vegtables, it may be boring but it is worth feeling better.
  2. Go to bed at the same time every day and get at least 6-8 hours sleep. This is so important if I stray from this I pay dearly.
  3. Drink plenty of water
  4. Figure out what outside trigger are and avoid them, bright lights, loud noises, scents, etc. The lights in my house are very low and the computer screen is turned down to it’s lowest setting. You may even try wearing sunglasses if the lights are a big problem.
  5. Do not push yourself to do things you cannot right now it will make things worse. You will be able to in time bu do not rush it.

HAVE YOUR VITAMIN D LEVEL CHECKED, many here have found their level was low and need a supplement to get their levels back up, however the best source is the sun. When I had mine checked it was 8 and it should be on the low end 35 mine is finally back to 35 but I continue to take a supplement daily.

I also take magnesium, Vit B complex .

I can tell you six months ago I was where you are today and though I am by no means as “normal” as I once was I am at a much more manageable level these days.

When this first started my anxiety level became very high as I think we do not understand what is happening and it is so frustrating. But there is hope and with diet, lifestyle changes and in a lot of peoples case some medications you can get this to a manageable level.

We are here to listen and talk anytime as we have been there and some of us still are struggling, but never give up there is hope.

Thank you so much for answering!

Do you know if having dental work done can cause this? In November I had my teeth cleaned and a cavity filled in one of my upper teeth. The dentist actually hit a nerve in that tooth because it was very painful. A few weeks later my tooth became very sensitive and I started having awful headaches at night. I went back to the dentist and the filling had actually fallen out so I had it refilled. The headaches ceased.
For the last several weeks i have noticed that again my tooth is sensitive and I’m having those same headaches.
Do you think maybe my cavity fell out again and this could play a part in what is happening to me?

I also believe that having impacted ear wax removed from my right ear could play a part also. Right before this nightmare of mine began I could feel ear wax building up in my right ear. I tried to get it out with hydrogen peroxide but I couldn’t and my ear plugged up. The next day I went to urgent care and the lady irrigated my ear with water and it hurt tremendously when she did it! Within an hour or so of having this done both my ears became full ,I had pressure in my sinuses and they hurt somewhat, and I became very congested. I thought I had a sinus infection now so I went to the doctor a couple days later to get antibiotics. That’s when the vertigo started. Ever since then I am not balanced when I walk. It looks like the floor is swaying whenever I walk. I can also feel swaying and rocking when I sit still, stand, walk, etc. Do you think this nurse who cleaned out my ear caused damage to my inner ear somehow? I find out tomrrow the results to my VNG test. Then I will see a Neurologist in the afternoon.

I am going to start the headache diet immediately. I can’t live like this for the rest of life. I have to have my Mom come over during the week and help care for my son while I’m like this.

If I do have MAV, which I have many symptoms, will I have to have phyiscal therapy to correct my balance or will my balance get better once my headaches cease?
Do a lot of people feel this way in the beginning? Feeling like the floor is swaying back and forth when walking? This is the toughest symptom for me. I just want to be able to walk normally.
Thanks everyone, This forum is great. I have been so upset, I just want this nightmare to be over.

Dear Dizzyinaz,

I totally know how you are feeling. I have been there and it is not fun. :frowning: I have had this for about ten months. I am now having more better days than bad ones. My bad days aren’t even as bad as they used to be. Timeless has given you excellent advice. i followed her advice from day one. I read the book “Heal your Headache”. Trust me on this one, follow it. I was ready to just give in to this condition. After talking to Timeless, Brian, Marci, Joe, just everyone on this forum, well they gave me hope. I am 34 years old and have two young children. My parents had to help me everyday. Now, I am going places by myself again, I am able to take care of my kids without help. I have had 3 good days in row where I feel almost myself. Everyone told me your body readjusts itself to the dizziness. I believe that. The floor swaying and rocking will subside. In my case, it seems to lessen everyday. There has only been improvement since - 1. I started Verapamil & increased it twice 2. Stopped all caffiene, msg, chocolate, certain cheeses 3. I have a regualr sleep routine consisting of the same bedtime, wake up time, 8-9 hours of sleep 4. Exercise (light) 5. Vitamin D, Vit. B complex, fishoil, supplements regualrly ( I am Vit.D deficient) 6. Try to avoid unnecessary stress!!! I have eliminated a few people from my life that made it intolerable. I just stopped talking to them. One of them was my mean, ungrateful, mother-in-law (she has upset me terribly for 12 long years). My husband is starting to understand that I just can’t handle her.

I have had a few set backs along the way. I thought I had this MAV beat twice and I had minor relapses. But I didn’t give up thanks to everyone on here. Since I have increased the Verapamil, I am feeling better. This used to be my bad week, the week before my period. But for some strange reason - I am doing really well. I do have occasional “floor dropping”/elevator feelings. It lasts only a second or so. I found out it mainly happens when I am stressed or strayed from my diet.

I go to Dr. Hain. He blamed mine on hormone fluctuations due to me being in my thirties. Maybe that could be your reason for having this. He said it will leave and possibly return during menopause. I have to stay on Verapamil for 2-3 years.

I truly feel for you. My heart goes out to you. MAV plain sucks!! So does the anxiety that comes with it. These have been the worst 10 months of my entire life too. You will get better. This shall pass. I feel it is not permanent. I don’t think dental work caused this but it is strange how it came on after the ear cleaning. Hmmmm. That is a weird coincidence.

You are in my thoughts and prayers -
Nance

oh - I forgot to tell you. I do go to physical therapy only once a month now. She specializes in vestibular disorders. She actually diagnosed me with this before the doctor. She gives me exercises to do at home with one of those huge exercise balls. The eye exercises she gave me to do were hell. I don’t do those anymore, Dr. Hain didn’t see them as necessary. Dr. Hain suggested the Wii fitness board to develop better balance. I do that too. Not as often as I should though.

  • Nance

Thank you Nance! Thank you so much for helping me!
This truly is the hardest thing I have ever been through. I’ve been crying every day and my husband says he feels so hopeless because he can’t take this nightmare away from me.

About what time did your walking get better? If I follow the diet, take supplements, try and do VRT exercises, do you think I could see an improvement real soon in my walking? Or will it take many months for me to see an improvement? And can you have kids while taking the drug Vepramil?

Again, thank you so much for all of your responses!

Verapamil is pregnancy category C in the US, which apparently means:

— Begin quote from ____

Animal reproduction studies have shown an adverse effect on the fetus and there are no adequate and well-controlled studies in humans, but potential benefits may warrant use of the drug in pregnant women despite potential risks.

— End quote

Doesn’t sound too good, there are probably better options (that would lie in categories B or A).

Dizzyinaz,

Well, I have only been on the Verapamil since December 18th of 2008. It has only been about 2 months. Dr. Hain said it can take 1 1/2 months to feel the full effect of it. I started Physical therapy in the last part of October, but I wasn’t actually diagnosed with MAV until my phone consultation with Dr. Hain on December 18th. He reviewed all my records, tests, etc. Of course, all test results were good. The only thing that came back was - I was Vit. D deficient. I then met with Dr. Hain in January in person. He then increased the Verapamil, I see him again in July.

This is just a thought, I suffer from cluster migraines every spring time for 3 months in a row. I have never, ever gotten dizzy with them though. Right now I have actually been headache free since May. I had every MAV symptom since the end of May but the headache. However, when I was pregnant both times, I never had headaches. The hormones somehow fluctuated for the better. It is possible that it could go away if you were pregnant. But i understand it would be terrible if it didn’t, and you had MAV and pregnant at the same time. That would suck. There are other medicines Dr. Hain suggested to me - Effexor and Topamax. Maybe one of those can be taken while pregnant. Or - perhaps you could try Verapamil, take it for the recommended time, then try for a baby. I’m sure you are eager to have one sooner so maybe one of the other medicines would be better. The only one I have ever tried is Verapamil. It had fewer side effects - constipation mainly. But I haven’t had a problem.

As for the therapy, well it couldn’t hurt to try it. I would say after taking my supplements, pt, medicine, proper rest, etc. - I felt better within about a month and a half. Do you have any anxiety with it? Mine has gotten a million times better now that I feel better. Are you under a lot of stress? I was under major amounts of stress for a couple of years straight prior to this.

Sincerely,

Nance

Dizzyinaz -

I just looked up Topamax and Effexor. They are category c drugs. I don’t think they can be taken while pregnant. However, I looked up my letter Dr. Hain sent me and he did mention some other medicines I could try - Klonopin, Neurontin,Trileptal (this drug is only for my “dips” or elevator feelings if Verapamil didn’t work he says). I am not sure if these can be taken while pregnant. I can look them up. I am sure there are others out there that are safe to take while pregnant.

  • Nance

— Begin quote from “dizzyinaz”

Thank you Nance! Thank you so much for helping me!
This truly is the hardest thing I have ever been through. I’ve been crying every day and my husband says he feels so hopeless because he can’t take this nightmare away from me.

About what time did your walking get better? If I follow the diet, take supplements, try and do VRT exercises, do you think I could see an improvement real soon in my walking? Or will it take many months for me to see an improvement? And can you have kids while taking the drug Vepramil?

Again, thank you so much for all of your responses!

— End quote

My really bad symptoms started in July and did not know about or start the diet until mid or late October and did ot finish reading the book until November. I started to feel better within a month and by Christmas was much better and cheated on the diet and that was a mistake. I have to eat five or six small meals a day instead of three meals, this is what worked for me. I also feell like I have RHG which you can find information on the net.

Here is one , not the one I usually refer to but it is not longer on the net.

diabetes.niddk.nih.gov/dm/pubs/hypoglycemia/

I had the VRT exercises with minuim success but did see slight improvement.

So sorry to hear you are feeling the way you are right now. Things will get better…just keep telling yourself that, it will happen. When I first started feeling like this (May 2008), I was such a wreck. I actually had my first panic attack over this…at work!! I am starting to feel better and I truly believe now that eventually I will have this under control…and you will too!! I too, am 31 and have a 3 year old. My husband and I would also like to have more children, but probably not for another year. I am hoping by that time, I am feeling 100% …or pretty close so that I can enjoy being pregnant and the experience of having another child.

Finding a good doctor and getting a diagnosis are really important. I have been going through this for 10 months and my neurologist has mentioned migraines, but has also told me that it could be a virus, POTS, or something wrong with my neck. I feel like I have wasted a lot of time worrying and waiting (…for the virus to go away), not to mention the 3-4 months in between appts., when I truly feel this is all a manifestation of migraine. The Heal Your Headaches book is great, and it is really helpful to check in at this forum from time to time, b/c there are a lot of people who know their stuff and are very helpful.

You’ll be okay!!

Thanks everyone! This forum is so wonderful because I can talk to people that know what I’m going through.

I had an appointment with my ENT today. He told me my VNG test was normal and he thinks I probably have MAV. He says he sees about an average of one woman a week that comes into his office with symptoms similar to mine. I started crying in his office because I’m just so frustrated.

I also went to my first appointment with my neurologist. He told me that I could possibly either have a virus or MAV. He’s sending me for a MRI and bloodwork. I have to go back in two weeks to find out the results. I am praying that he’ll start me on migraine preventatives as soon as possible. I hope he doesn’t hink its a virus and to give it time to go away. I just want my life back!

I am so worried about my walking too! Is it normal with MAV to have sensations like the floor is moving and swaying when I walk? Will I have to have VRT to help with my walking once the migraine medicines work or will the floor moving sensations just subside once the meds kick in? This symptom is horrible for me. I love being in the car because I feel somewhat ok when the car is moving. I’m worried now that I don’t have MAV because of the floor moving/walls closing in/swaying feeling when I walk. Is this a normal symptom? I’m so afraid I’ll have to live like this for the rest of my life.

I’m going to go out and get all the supplements tomorrow. Has anyone had succes with herbal remedies to relieve migraines? There is something called Migrelief. Do you know if anyone has had success with it?

— Begin quote from “dizzyinaz”

Thanks everyone! This forum is so wonderful because I can talk to people that know what I’m going through.

I had an appointment with my ENT today. He told me my VNG test was normal and he thinks I probably have MAV. He says he sees about an average of one woman a week that comes into his office with symptoms similar to mine. I started crying in his office because I’m just so frustrated.

I also went to my first appointment with my neurologist. He told me that I could possibly either have a virus or MAV. He’s sending me for a MRI and bloodwork. I have to go back in two weeks to find out the results. I am praying that he’ll start me on migraine preventatives as soon as possible. I hope he doesn’t hink its a virus and to give it time to go away. I just want my life back!

I am so worried about my walking too! Is it normal with MAV to have sensations like the floor is moving and swaying when I walk? Will I have to have VRT to help with my walking once the migraine medicines work or will the floor moving sensations just subside once the meds kick in? This symptom is horrible for me. I love being in the car because I feel somewhat ok when the car is moving. I’m worried now that I don’t have MAV because of the floor moving/walls closing in/swaying feeling when I walk. Is this a normal symptom? I’m so afraid I’ll have to live like this for the rest of my life.

I’m going to go out and get all the supplements tomorrow. Has anyone had success with herbal remedies to relieve migraines? There is something called Mig relief. Do you know if anyone has had success with it?

— End quote

My walking and equilibrium was off very bad when this first started for me, it was constant. Once I started the diet and did the other things I mentioned it started to subside.

Get the book and read it, it will help I believe .

I have never tried the Migrelief but I would suggest the Magnesium, try “Calm” you can get it at health food store.
That is strange what you said about the car cause that always made my symptoms better but only if I am driving not riding.

Please make sure they check your Vitamin D level, seems like a lot of people have problems with that. You can get Vitamin D but do not get the gelcaps because gelatin has MSG properties and that can cause problems get the tablets.

Some people have said that ginger tea helps, especially with any nausea.

Scott can probably speak to some of these remedies as he is an expert on a lot of them.

CoQ10 helps some people also.

Right now it sounds like you may be having a lot of anxiety with all of this perhaps you may something to help deal with that also. I know I did and it has helped.

This is not a quick fix , be patient and know that you are going to get better we or most of us know how you feel and we are here for you. Make sure and get plenty of rest…that is so important especially in these early stages.

Thank you so much Timeless!

How much magnesium and vitamin D and other supplements do you take on a daily basis? I’m sure I have low vitamin D since I don’t hang around in the sun too often. I’m going to go get it checked and hopefully my hormones too. I ordered the book, Heal your headache, I should be getting it on Friday. About how long did it take after starting the diet for your walking to improve? Was it within a month or so or did it take longer?

Do people ever recover from this? Or will I be dealing with this for the rest of my life? I’m hoping and praying that these things will work for me so I can walk normally again.

dizzynaz, you say you feel ok when youre in the car? what exactly are your symptoms? It could be that you have mdds, but treatment options are somewhat similar so it may not matter. If you dont get relief from typical migraine-meds, maybe try amitriptyline, that can help both mav and mdds.

Im not saying you have mdds since mav can be better in the car as well, but I think its usually the other way around (you feel worse in the car).

— Begin quote from “dizzyinaz”

Thank you so much Timeless!

How much magnesium and vitamin D and other supplements do you take on a daily basis? I’m sure I have low vitamin D since I don’t hang around in the sun too often. I’m going to go get it checked and hopefully my hormones too. I ordered the book, Heal your headache, I should be getting it on Friday. About how long did it take after starting the diet for your walking to improve? Was it within a month or so or did it take longer?

Do people ever recover from this? Or will I be dealing with this for the rest of my life? I’m hoping and praying that these things will work for me so I can walk normally again.

— End quote

Once I started the diet my symptoms started to improve within a month to six weeks, was it all the diet I do not know for sure but I know that I started to see results within that time and the ENT that stated I had MAv told me I should see some results withing that time frame.

I am not sure that people ever completely recover from this but I know that it can become more manageable as many here have experienced a lot of improvement with diet, life style changes and medication. Depending on how low your Vit D levels are the doctor may want you to take a increased dose for a specific period of time. If you can get out in the sun for at least 20 minutes a day that is the best way to improve your levels but some parts of the world it is not possible. So therefore supplements are the option.

M doctor has me on 2000IU of Vitamin D a day and 400 twice a day of magnesium.

What is your sleep pattern like, as that is so very important to help manage this disease.