New to the site - could use some support/feedback

Specific Illnesses & Conditions VM/MAV
1

I have used this site as a reference in the past but have not officially signed on until now. I have had these symptoms (to be listed below) for about 1 year now and it has cost me a considerable amount of lost productivity and my wife-to-be even had her fill and has since moved on. The ramifications of these debilitating but constant episodes are getting to be more than I can swallow. I was a very active, extremely social person with an outgoing person who now prefers to be alone and quiet. I have seen a number of ENT’s with very little productive feedback - they felt sure things would just ‘correct’ themselves…wrong.

He then referred me to an neuro-otologist in SLC, Ut which has perscribed a series of drugs… Verapamil (didnt help), Amitrypltyline (nothing) and now I am on Day 3 of Effexor (37.5 mg for 7days and then up 75 mg). Something has got to give…I was a fully functional person and then like a ton of breaks my life was immediatly altered to this half-functioning social recluse.

My symptoms:
• General problem with balance, focus and coordination. Overwhelming feeling that something is just ‘not right’ – very debilitating. Coordination seems off and ongoing sense of “de-realization”.
• Strong sensation that a blackout/fainting episode could occur – very scary and debiliatating.
• Almost a drunken, surreal, feeling most all of the time.
• Minor rocking/swaying sensation at most times – sitting or standing.
• Almost feels like a great pressure on brain – as if brain were swollen.
• Eyes often very head and feel need to close them/doze all the time.
• Not always associated with movement, uncomfortable sensation immediately upon opening eyes in morning. Hypersensitive to sudden noises in morning and movement.
• I have difficulty following simple conversation, often space out or zone out. Feeling generally dumbed down and slower than I once was. Feel like I am looking right through someone when they are speaking
• Busy environs, grocery store/city street seem to exacerbate issues
• No extreme whirling or spinning sensation, just a feeling of constant movement.
• Difficulty focusing on a lot at once. Driving is sometimes challenging.
• Roaring in ears, especially when eyes are closed.
• Coordination is off, fall/slip occasionally and never used to.
• I try to maintain healthy diet – low sodium, plenty of fruits and vegetables. I don’t smoke; I consume plenty of water per day.
• Pressure and fullness in head and sinuses.
• Intermittent muffled hearing.
• I feel as though while walking around I am constantly cognizant of maintaining balance and not fainting or stumbling into something.
• Feeling social anxiety and reclusiveness as a result. Feels better to avoid all social interaction.
• MRI was all clear and showed no abnormalities
• Rocking, off balance issues seem to increase in shower, bathroom stall - other confined spaces.

I need some help or support or even just some words of encouragement. This issue is slowly killing me.

2

Welcome. I am so sorry that you are ill. I just wanted to let you know that I can relate to most symptoms that you listed. I believe most or all of us were formerly very active, productive individuals. This illness truly brings even the strongest person to their knees. My only advice is to read the success thread on this forum, if you haven’t already done so. It truly gives me hope to see people are better. It does happen! Just wondering, when you said Verap and Amit. didn’t work, did you get up to therapeutic dose on those drugs? I hope that Effexor is the answer for you. I am also so sorry to hear that your partner didn’t support you through this. That is very saddening to hear.

3

Hi Fading

First off, welcome, and as you will probably know if you’ve been reading on the site, all the symptoms you list are common to all of us. I myself can identify with almost every one of them. They are awful and as you know can turn you into someone you almost don’t recognise from before which is truly upsetting. So sorry to hear your relationship broke down because of your illness, that’s hard and definitely will have added to your feeling of despair at what’s happening to you. As you so rightly say the ramifications of MAV are often costly and soul destroying.

You mention the meds you’ve taken, have you tried the dietary changes yet ? The migraine diet doesn’t help everyone but it really helped me at a time when I’d all but given up and lost hope of anything ever working. If you haven’t I’d say it’s definitely worth a try. Plus the lifestyle changes - regular sleep, exercise, destressing techniques, drinking enough water etc. Even if they are not the full answer they may help in the long run.

And use the board when you feel down as you have done here, it’s amazing how virtual support like we have here can make a lot of difference. I hope something gives for you soon Fading, it just takes a little something sometimes just to give us hope to carry on and feel that there is a solution after all.

Wishing you the very best

Brenda

4

Fading, welcome to the forum! This is a great place to find information and support. I too can relate to most of your complaints. As Lisa, said, this illness can bring anyone to their knees. It sounds like you have a Dr. that knows something about this illness given the meds you have tried and are trying now. It seems like it is a trial and error in finding the right med or combo of meds that will help each person. I think it is important as Lisa indictaed to make sure that you have tied the meds for a sufficient time and at the right dose - unless the side effects are unbearable, which I can definitely relate to. I hope that Effexor does it for you - there have been some here that it has helped. Good luck. Ben

5

Thanks guys - with regards to the medication to date… I was only given time to try each for +/- 1 month ebfore the dr switched up what I was taking. Amitrytiline (sp?)… leveled me. I was exhausted all day regardless of sleep.

I maintain a healthy diet (although by no means ‘the migraine diet’), exercise when I am able and drink plenty of water. I have gave up alcohol about 75 days ago.

One of my biggest issues is the feeling that I could just blackout where I am standing and fall to the ground. Extremely nerve-wracking when you are in a strange place or standing as a groomsmen in my best buds wedding recently.

6

I copied this from a previous post I had posted …as it applies here also.

Welcome to the board though I am sorry you are going through this illness like the rest of us here.

I would suggest you get the book “Heal Your Headache” and “The Migraine Brain” both have good points in them that may or may not be of benefit to you as you go on this journey. Both are on Amazon so you can order them there at a reduced price.

The things I can say have benefited me are in the following"

  1. Following the migraine diet…( I know it has not worked for some but for me it did make a big difference) You have to be very strict with it but to me it was worth it as ill as I was when I started it back in 2008.

  2. Stay on a strict sleep pattern, of all the things I have done this has made the biggest difference to me. I go to bed at the same time each night and get up at the same time each morning. (within 30 minute) on either side.

  3. Try and get 30 minutes exercise each day…this is the hardest for me to do as it seems to set off my symptoms. But all that I have read and the doctors all say this is important.

  4. Drink plenty of water…that is all I drink other than a bit of juice during the day. About 60 ounces a day is what I consume.

  5. Find a doctor that is familiar with MAV , and be prepared they all seem to address this from diff perspectives. You have to figure out what is going to work best for you. Find someone you feel comfortable with and have confidence in treating you and helping you on this journey.

  6. Do not push yourself too much …your body will let you know when you have to slow down and you must or you will most likely pay the price (or that is how it works for me).

  7. Realize there are others in the same boat and we are here to listen and support you and offer what has worked for us though not the same thing that works for me or others may work for you. It is trial and error.

I have tried some of the meds to this point I have been unable to tolerate any of them other than I take a very small dose of Valium everyday. 2mg it helps me with the anxiety and rocking sensation …

Some people find they have to wear sunglasses because of the lights, others have to stay away from scents and chemical smells (HUGE trigger for me) I carry a mask with me everywhere I go.

It means changes until you get the proper treatment that works and even then IMO without some lifestyle changes the meds alone will not get you to 100% neither will the lifestyle changes by themselves in most cases. It is a journey welcome aboard and we are all on the same train right now.

Does your doctor say you have MAV?

7

— Begin quote from “Timeless”

Does your doctor say you have MAV?

— End quote

Not in those exact terms; I somewhat suggested it and he seemed to go along with it. Obviously not nearly as important to him as it is to me to get to the root of this misery and snuff it out. I am seeing a neurologist in a few months per his reccomendation.

8

As the others have said , “Welcome”…iti may not be the best club to joing, but the members are sure nice! And we all can relate to either some or all of your symptoms.

Mine started back in March and I have tried several medications. After fighting and fighting with myself to try every other alternative. I am on Ami now at 20mg, and just added Cymbalta to the mix. Which is like Effexor in molecular make up. Have you been to Dr. Hain’s website? I think it is www.dizziness-and-balance.com. I found it helpful, we were the books suggested. I did the Migraine diet and didn’t get much out of it, but it’s a healthier way to live for sure.

I’m sorry you are having a rough time. What dose of Ami were you on? I’ve had soooo many days and nights and weeks even of just complete break down and wondering how such a healthy vibrant individual could fall so fast for no apparent reason? I do believe there are a lot of possibilities with meds that can bring about a functional life again…one that feels like your own. My meds have lifted my deep depression, and I’m really only on over a month…so I’m hopeful I can keep getting better.

Feel free to pm me anytime…we are all so supportive of one another…because we know how it feels…Glad you found this site…its helped me immensely.

9

Hello Fading, welcome to the site. I am also new here and looking for answers. Since getting mt first vertigo attack almost three years ago which has evolved to a daily unsteadiness I have spent almost all my spare time looking for answers. I have never officially been diagnosed with MAV but I believe that this is what I have. My ENT told me it was probably viral, a Neurologist told me migraine, Physiotheripist told me vestibular loss, Chiro and Osteo said it was my neck and I think my GP doesn’t believe me. After finding this site I think that I am finally getting some answers. Menieres.org and dizzytimes.com also have many MAV’ers with a lot of suggestions. I would recommend getting the book " Heal your Headache ", it talks about diet and triggers, and preventitve medication. Good luck on your journey because we all know life isn’t the same with this condition. Hopefully you find some answers and if I do I will post them.
Steve.

10

Just got a call from the neuro-otologist. Wants to increase my dose of Effexor to 250mg/day. Thats seems really strong. Any thoughts?

11

That is extremely strong. When I trialled it, I only took 1/3 of 37.5, and was only supposed to GRADUALLY get up to 50-100 I believe. I would really clarify with your doc. that seems extreme. please be careful. I would not take such a high dose. I had trouble tolerating a tiny amount.

12

Hi

Well I have just read your story and I can honestly say I suffer everything you mentioned. I could have well wrote that list. Im not a little dizzy. I am completely disorientated all of the time. I have felt like this for two and half years now and like you I feel like I have become a recluse. One day I was fine the next day I woke up and my life changed.

Below are my symptoms Taken from your list: I could not describe them any better myself. I have listed to show that you are not alone.

• General problem with balance, focus and coordination. Overwhelming feeling that something is just ‘not right’ – very debilitating. Coordination seems off and ongoing sense of “de-realization”.
• A drunken, surreal, feeling all of the time.
• Rocking/swaying sensation at most times – sitting or standing.
• Almost feels like a great pressure on brain – as if brain were swollen.
• Eyes often very heavy and feel need to close them/doze all the time.
• Not always associated with movement, uncomfortable sensation immediately upon opening eyes in morning. Hypersensitive to sudden noises in morning and movement.
• I have difficulty following simple conversation, often space out or zone out. Feeling generally dumbed down and slower than I once was. Feel like I am looking right through someone when they are speaking
• Busy environs, grocery store/city street seem to exacerbate issues
• No extreme whirling or spinning sensation anymore, just a feeling of constant movement.
• Difficulty focusing on a lot at once.
• Coordination is off, fall/slip occasionally and never used to.
• II consume plenty of water per day but I do smoke
• Pressure and fullness in head and sinuses.
• I feel as though while walking around I am constantly cognizant of maintaining balance and not fainting or stumbling into something.
• Feeling social anxiety and reclusiveness as a result. Feels better to avoid all social interaction.
• Rocking, off balance issues seem to increase in shower, bathroom stall - other confined spaces.
. Bouncing floor whilst walking or shifting weight

The only difference between you and me is that I have been lucky not to get those strange ear sounds. However I did get occasional ringing for roughly a year when this thing started but no longer.

I understand how you feel believe me. It has taken everything out of me and has put enormous strain on my relationship. It really is enough to make a grown man cry

The only thing I can suggest is to keep searching,keep as active as you can even if its only 20 min walk around your estate a day. This is what I do.Keep pushing on. I know this sounds easy when it really is not but it is all we can do.

We will not have this forever. We were healthy and fine once and we will be again.

Good luck

13

Hi Fading,

I think everyone on this board can relate to your symptoms, the frustrations of trying to convey to those close to you just what this feels like and how it can absolutely take over your life. Given how absolutely rotten we can feel it is a challenge to just get through the day without having to worry about work or socialising.

Getting a correct diagnosis took me 10 years of expensive and exotic medical tests. To find out once and for all what I was dealing with (and that it wasn’t MS) was in many ways a relief. Finding this forum even more so. I hope you can take some comfort that you have also now got this far.

As others here have pointed out there are a lot of “lifestyle” factors that can help manage this condition to a degree. Wherever possible, keeping your “life” going, including socialising is really important. Many of us experience anxiety with this condition, which can be exacerbated by going too hard, but on the other hand depression can set in if you don’t go at all. It is a real balancing act.

The other good news is that there are a lot of drugs out there that can help. Personally, I am having pretty good results with Prothiaden (daily) and Valium (as needed).

The stress of this on relationships is not to be underestimated. Our suffering is “invisible” and prolonged. I am currently single and I have to confess, the energy required to “get out there” is quite daunting, let alone trying to explain to a new partner what MAV is. A while ago there was a thread on this forum where we decided that the easiest thing would be if we all just dated each other - no explaining and no need to put on your happy face and go out - we’d just stay in slumped on a sofa and sharing a bowl of Valium :lol: .

I do hope you find a med that works for you and that you can take some comfort from the support offered here.

Best
Victoria

14

And dont forget to check for reactive hypoglycemia (its often in the mix). Could be to do with your fading and feeling like blacking out.

Christine

15

That’s a good point Christine. It definitely can be part of the mix. It was years before I twigged what those particular feelings were.

Brenda.

16

I guess until recently I had assumed that migraines were intermittant and came and went - so why does MAV (if that is what I am dealing with) affect me 24/7?

17

The accepted “wisdom” (which, frankly, I now question) is that migraines have a start and finish point, so how can people with MAV have it continuously for weeks or months? My neurologist (at RPA in Sydney) said I was in a “cycle of migraines”, which I took to mean back to back migraines. I think there is still a lot that is unknown about migraine in general and MAV specifically.

18

Based upon my symptoms that I previously listed would you think my condition to be MAV? If not - what are the other possibilities?

19

I suppose you could have a rare condition, called Mal de Debarquement (“disembarkment sickness”), as its symptoms are often very similar to those of MAV, but in most people that’s not the case. I wouldn’t give that idea much thought – unless by some chance your symptoms began to appear after some sort of boat ride, cruise or plane flight. (THEN it may be a possibility.)

But as our resident expert Scott would say, this sounds like a classic presentation of MAV. The odds that it’s something else (like, say, uncompensated vestibular neuritis / labyrinthitis) are probably less than ten percent.

If you have a history of migraine headaches, or a family history of them, that’s a big “red flag.” Also, if you have (or used to have) motion sickness, that also points to MAV – motion sickness is about 5x more common in migraineurs than in non-migraineurs.

Your question about constant vs. intermittent migraines is a very good one, and one we discuss here with some frequency. Unfortunately, with MAV, it can be either episodic or constant, and MAV just doesn’t work, it seems, in the same way that “regular old” migraines (migraine headaches) do. Probably, people with constant migrainous vertigo have a more severe case than those with episodic vertigo. It seems the brain becomes caught in an ‘endless loop’ (or ongoing migraine state) of sorts – basically a state of perpetual dysfunction – and requires medical intervention to put and end to the migraine. The idea is, end the migraine, and you’ll end the vertigo, which is the symptom.

(Some people, however, don’t fully agree, and believe that the vertigo is not just a symptom but that MAV is its own distinct, though related, disorder.)

… Not the best, or shortest, reply, I know, but maybe you’ll find something in this that explains a little.

20

I definitely had episodes of motion sickness growing up - most notably on boats (and once off the boat I felt that I was still on it for hours). I also got pretty car sick.