New to the forum, Any thoughts?

Specific Illnesses & Conditions VM/MAV
1

Hi everyone, I am new to the forums and after reading the guide I was hoping to share my experience with everyone to see if I might get some answers.

My problems started just over 4 weeks ago where I experienced two bouts of dizziness, the first was when I was at work the room suddenly began to start moving, I immediantly slammed my hand down on the table in panic and it subsided. I put this down to anxiety as I had being stressed and also had being drinking the night before (I get horrible hangovers).

The second time this happened I was at the pub the following night, this time the dizziness just came on suddenly and I felt like I was moving from side to side. So I staggered to the bathroom and washed my face, calmed myself down and it went away (again putting this down to anxiety).

The following day I woke up with flu/cold like symptoms and a sensation like I was on a boat, or there was some sort of internal movement. This affected my balance, after several days of this I began to worry - went to the doctor who said this was a case of Labrynthitis.

Whether or not it was the anxiety, or the internet searching or not my balance and dizziness seemed to get much worse over the next few days, to the point I was unable to get out of bed for more than a few minuites and maybe go and have a ciggerette to calm myself down. During this period I was was experiencing anxiety like I have never experienced before. Fear of impending doom, ringing and fullness in my right ear. I was so tense my body would be locking up and I would be fidgeting with things just to keep my mind of it - feeling like I was going insane.

Since the “worst” of the symptoms - I have being waking up feeling not right everyday since, with days where I feel like I am improving only to wake up the following day feeling awful again, strangely this seems to be in a one on and one off kind of situation. Whether or not these symptoms have actually improved or I have just started to get used to them, I’m not sure.

Throughout this duration I have developed sore points all over my head, tension headaches (which I have never experienced before), eye straining, tired eyes, headaches that move around and a constant popping sensation in my ears. The feeling like I am somehow moving is still here, especially when I wake up in the morning - but I dont know if this is because I am constantly thinking about it? When I sit on the floor I have a sensation the floor is moving, and sometimes when I close my eyes it feels like I am spinning but when I open my eyes I am not.

I went through a similar stage 5 years ago when I was 20 - I awoke with what I felt was a viral infection which never left and then developed anxiety and hyprocondria. I complained of a spaced out feeling, depersonalization and derealiziation which is triggered by floresent lighting such as supermarkets, or just rooms which are well lit artifically, although I never received and rocking sensations or loss of balance - I never really fully recovered from it but most of the symptoms went away and I was living a normal life up until 4 weeks ago, apart from the anxiety which flared up every now and again. I had scans and saw various specialists who found nothing wrong with me, and I was told the problem was a general anxiety disorder.

So here I am, the doctor has reffered me to a ENT doctor, he says my ears have a lot of wax inside them which could be making the situation worse so I am applying ear drops daily. I had blood tests which also came back fine, and the doctor gave me many neurological exams. But did not feel it was appropriate to send me for any scans or otherwise.

I have suffered from migranes throughout my life, I never noticed any specific triggers as they did seem to change a lot, they are a nuisence but have never being a chronic thing and a good nights sleep has always got rid of them. Last year I experienced quite a lot during the summer, but found keeping my sunglasses on and drinking plenty of water stopped them. I have never experienced any balance problems or dizziness from migranes before though. I suppose I just wanted to see if anyone here has followed similar circumstances.

I never usually take this long to get better, if I have a cold or flu or something I am back on track after 2 weeks maximum. Feel a bit lost at the moment, I spent so long getting to where I was and now feel like I am almost back where I was 5 years ago but atleast I could go out and still do normal things! I am skeptical about diseases and diagnosis because with me it always seems to be “unexplained” problems or things that have no conclusive diagnosis.

What are your thoughts, if any?

Thank you for reading, and sorry for the long post.

Regards

2

Hi Jimmy,

Given that you are a migraineur and this is the second time this has happened to you, I think the chances are quite high that you’re dealing with MAV. At first I thought it could be labs or VN but you’ve had this before so very unlikely.

I wouldn’t make too much out of the anxiety. It’s common for some when this erupts. I had it badly in the early days. The anxiety may give you a clue to the best med to trial if you can’t get a handle on this through lifestyle modification – as in a tricyclic or SSRI.

Hang in there and try to remove possible triggers as a start.

S

3

As mentioned, I received no dizziness or balance problems the previous time I had this episode - So I cant really see the connection myself?

4

Hi Jimmy,
I painstakingly typed out a response similar to Scott’s, on my phone, only to be logged out. Grrr!!

Don’t be fooled by not being dizzy previously. Migraine symptoms are hugely varied and change over time. Fascinating and frustrating!

5

Thanks for the reply,

I dont feel that migranes trigger off dizziness however, last night I had a right sided migrane and I only felt slightly off balance compared with the rest of the day I felt like hell. I just wish when I got ill I actually got something that could be conclusively diagnosed instead of having to discover these phantom mystery illnesses that have little research, and can cause pretty much every symptom in the book, with absolutley no tests to provide a real diagnosis. I could at this moment accociate my troubles with a huge list of different illnesses and diseases. When I was ill last time I was 100% convinced I had cancer - obviously I didnt. Suppose I just dont want to be back on this waggon again moving from illness to illness and worrying myself night and day.

I look around at all my friends leading normal lives, without having to abstain from doing things, or avoid certain situations - Why cant I just be normal!? I know nobody can answer that but you know… it really brings me down.

Anyway, if this MAV was what I am experiencing - is there any things I can watch out for in particular which might be good signs this is MAV? How long should I except this to last, I am currently 4 weeks in? Once the dizziness with migranes appears - does just last forever, and thats it?

6

Oh I’d also like to add that I havent really changed anything diet wise in the past 5 years, the only thing I have been experiencing is some serious bouts of depression.

7

Hi again Jimmy,

While sometimes there are obvious triggers for migraine (which would include depression by the way), other times there’s no rhyme nor reason to it. You can pointlessly tie yourself up in knots trying to figure out what triggered you. It’s a natural human thing to look for cause and effect. Sadly, it doesn’t always work that way.

You may have labrynthitis. But I suspect you don’t. I’ve been misdiagnosed with labrynthitis in the past and another time vestibular neuritis and my GPs knew that I was a migraineur - they just didn’t know that migraine presents as more than a headache, so they had no idea that my symptoms could be coming from migraine. Many people on this forum have had the exact same experience. Unfortunately most GPs don’t know much about migraine beyond ‘splitting headache’. For the majority of migraineurs that is indeed how their migraines manifest but for a substantial minority, they don’t. When you consider that around 10% of the population experience migraine (in any of its many manifestations) that’s still A LOT of people who are experiencing non pain symptoms, including - derealisation, depersonalisation, sensory disturbances (including tinnitus), photophobia (not liking fluro lights for example), phonophobia, anxiety and various forms of dizziness.

However, you could have labrynthitis. You could have Generalised Anxiety Disorder. You could have wax in your ears. You say you’ve had scans and other tests so presumably some other conditions have been ruled out. Migraine doesn’t ‘show up’ on any scan or test (except in rare cases where it presents as lesions visible on an MRI), it’s a diagnosis of exclusion based on symptoms. It sounds to me like your doctors are clutching at straws and simply aren’t familiar with migraine.

But you already know you’re a migraineur. And migraine specialists know that ALL your symptoms can occur as a result of chronic migraine. So, you could have labs, or VN or any other number of things or, like the 10% of the population that you already know you are a part of, it could be migraine. On statistics alone, which do you think is most likely? Do you think you got labrynthitis one time and have GAD now or is it more likely that your migraine has flared up on more than one occasion?

Anyway, don’t take it from me. Check out this thread: http://mvertigo.cloudapp.net/t/vm-fact-sheets/1222 This thread has papers from a range of the world’s top migraine doctors spelling it out better than I can

8

Whilst I appreciate what you are saying, I am unsure what to beleive really. I could attribute my problem to either labrynthitis or this disorder so I am non the wiser - the unsettling factor here is the lack of any clear diagnosis. I do not have a serious history of migranes, I have never spoken to a doctor about them or worried about them, on a few occasions they have made me sick. I simply do suffer from them a few times a year, some years I may not even receive them.

The episode I had 5 years ago caused a lot of distress in my life, whilst at the time and to this present day I do not beleive the sole cause was anxiety - something triggered the anxiety to get this bad. I was never able to find out what it was. At this time I was tested for various problems, including a x-ray and ct scan ultrasound of neck etc which all came clear - but this was 5 years ago.

I dont think my GP is clutching at straws, what I beleive is the NHS in the UK is useless and I personally have no confidence in our health care system, doctors here work based on statistics, so far I have being offered so solutions to my problem from the GP and I have had a referal to a ENT doctor.

I have been in the house for 4 weeks solid asides from forcing myself to walk to the shop everyday, I have no money left, I feel trapped and cheated out of my life, the problems constantly causing me distress - I just dont know what to do. The headaches are a more recent addition and were not present prior to the onset of these symptoms. I have no friends and my life revolves around work, I suppose this is all really starting to get to me - I am getting very angry and I just feel like giving up!

Does this eventually go away, do the problems get better - does the dizziness ever go for anyone? Can you lead a normal life, or is it just game over and thats it, my life is going to be like this now!?

9

Hi again Jimmy,

I can certainly appreciate your frustration at the lack of a clear diagnosis. Most of us have been there, I know I have. But keep in mind that many of us (self included) were in a great deal of denial that what we experience could possibly be migraine. I had 15 years of discrete migraine events that followed the same pattern, like clockwork. To accept that they had now changed into something completely different and chronic just did not compute.

Anyway, it’s not up to this forum to diagnose you or convince you that what you are experiencing could be migraine. Just keep in mind that as you already know for a fact you are a migraineur, it’s a distinct possibility that it is also the cause of your current woes.

As you are in the UK you may want to seek out Dr Nicholas Silver or Dr Surenthianin (sp?), two specialists very well versed in migraine whom many of our UK forum members see. If they can either rule migraine in or out I am sure it would go some way to helping you move forward.

As to whether or not the dizziness goes away - well, I guess that depends on what is causing it. If it’s migraine - absolutely. I am myself currently 95% dizzy-free. Check out the ‘success stories’ section of the forum. There would be many more posts but a lot of people just get on with enjoying their lives once they get well! :smiley:

It’s easy to say, I know, but try not to be anxious or catastrophise - this doesn’t help any condition and for migraine it can definitely make things worse. Check out the MAV survival guide and start putting things in place. Even if your current symptoms are not migraine related it’s a very healthy lifestyle (fresh food, regular sleep schedule, exercise, relaxation techniques etc) which will help you regardless.

Hang in there and keep us posted.

10

— Begin quote from “jimmyc123”

I dont think my GP is clutching at straws, what I beleive is the NHS in the UK is useless and I personally have no confidence in our health care system, doctors here work based on statistics, so far I have being offered so solutions to my problem from the GP and I have had a referal to a ENT doctor.

— End quote

Hi Jimmy, I’m in the UK too and although I hear you about the NHS, a referral to an ENT is not a bad way to start the process of finding out what’s going on. I was referred to an ENT after being diagnosed with labrynthitis and not getting any better after many weeks. He then referred me to an audiologist and neurologist and they conferred and came up with my diagnosis. So don’t despair, yet, of the NHS. You’re on the right track.

And yes, anxiety is ramped up no end at the beginning of this awful condition. It freaks you out completely. And as Vic says, it works against you.

Hope you get an appointment soon and some answers to your satisfaction.

All the best

Brenda

11

Jimmy, an afterthought. If you are not satisfied with the consultant you have been referred to, I think I’m right in saying that you can now choose which hospital/doctor you want to see. You just have to ask your own GP. Have a scout on the NHS website, it gives details. I don’t know where you are in the UK but Victoria mentioned two highly regarded MAV specialists here in the UK, Dr Silver in Liverpool and Dr Sutherian (sp?) in London. Just trying to suggest options and hopefully raise your spirits some. All of us have been in the place where you are now and understand how terrible it is to see no future. But don’t believe it is so, it WILL change in time.

Brenda

12

Thanks for the replies everyone,

Without working I would be unable to seek any private specialists, I have no financal ability to do that I’m afraid. Ideally I would prefer to be under private care than the NHS because they seem to atleast get the ball moving quicker from what I have read. My ENT appointment is not until October so I have over a month to wait until I can see anyone, which I can imagine from there will be a long back and forth process, I am doubtful the ENT doctor will do any testing on the first appointment.

It seems that labrynthitis usually takes anywhere from 1 to 8 weeks for recovery, with the exception of some people taking much longer to fully compensate for the injury. I did have a pretty thick cold a few weeks prior to the onset of all this, which took a few weeks to fully clear up - which would make some sense on the lab side of things, I just dont usually ever take this long to recover from something - and I usually start feeling better and know it. This seems to be so random and back and forth I cannot quite understand it.

I have not noticed any triggers to this dizziness though, I find it quite random, there does not seem to be a certain pattern to it from what I have experienced so far. I am naturally very observent and notice these things usually quite easily. Prior to the onset of this, I was not eating healthy and was drinking beer pretty much every night for a month or so due to stress. But I have never noticed any foods in the past have triggered any migranes - usually only the sun, being dehydrated or things like perfume and deodrant or similar chemicals.

I have cut out caffine and alcohol since it all started, I only drank one cup of tea a day anyway because too much caffine makes me anxious. I also only drink water to start with, with the odd fruit juice here and there. I have started eating healthier since the problems started, fish, veg and plenty of fruit in the hope that would improve my problems. My only bad habit is smoking but that doesnt seem to have any affect on the balance and dizziness. I dont eat much sweet stuff or chocolate either, infact its quite rare.

I suppose I have seen some improvement, albeit very slight. The panic is not as extreme as it was - but I guess my body is just becoming used to the symptoms more than anything else. My balance just seems to come and go, I might get up and feel sturdy one minute then the next time I get up I feel like I’m I still have to wear my sunglasses most of the day but that has always been a security blanket for me since the onset of everything 5 years ago. Doesnt seem to help as much this time though.

Is it normal to have bouts of MAV which then subside to a normal level again. I do have a headache today, but I am not able to sleep at all at the minute, I awake every night at 3-4am and have trouble getting back to sleep, the rocking sensation makes it difficult to get back to sleep. I have never really had problems with sleep before, unless I was simply not tired.

Just want this to go away, I am suppost to be starting university on the 17th of September, dont think I would want to start that experience feeling like this!

13

— Begin quote from “Brenda”

Jimmy, an afterthought. If you are not satisfied with the consultant you have been referred to, I think I’m right in saying that you can now choose which hospital/doctor you want to see. You just have to ask your own GP. Have a scout on the NHS website, it gives details. I don’t know where you are in the UK but Victoria mentioned two highly regarded MAV specialists here in the UK, Dr Silver in Liverpool and Dr Sutherian (sp?) in London. Just trying to suggest options and hopefully raise your spirits some. All of us have been in the place where you are now and understand how terrible it is to see no future. But don’t believe it is so, it WILL change in time.

Brenda

— End quote

Thank you for the advice Brenda - I live up in Newcastle so I am quite a distance from Liverpool and London. Although the doctor did ask me which hospital I’d like to visit - I dont know if you are able to request a different one or make requests to see particular specialists if the doctor doesnt think its required though? I just picked the closest hospital which is a 5 minute drive, the thought of travelling any further from home scares me.

14

— Begin quote from “jimmyc123”

Thanks for the replies everyone,

Is it normal to have bouts of MAV which then subside to a normal level again. !

— End quote

Absolutely. It seems to be par for the course. Just when you think you’re out of the woods, bingo, there you are again. But you can have quite long spells out of the woods - it varies from person to person, episode to episode. All very individual.

Brenda

15

Hi Jimmy, closing eyes and feeling dizzy then opening them and not so bad, I get that too. Many of your symptoms sound like mine. I am in the UK and I started with the ENT and had the tests, they said I had menieres that had burnt itself out. The dizziness got worse, sent to Addenbrookes Cambridge, more ENT tests, they said I had endolymphatic hydrops. Neurologist in Oxford for 10 years and then London for more ENT tests then the neurologist in London, diagnosed vestibular migraine. I know what you are saying about the NHS, I was going back and forth between ENT and Neurology for years. MAV is more recognized now so you should get a quicker diagnosis. Once you get to the ENT, they can refer you onto one of the consultants you want to see. I was referred on to Prof Goadsby in London, he recognizes MAV and the treatments.

Nowadays, if I want to try a preventative, I just go to the GP and ask for it, same drugs that you get from the consultants. But they wont want you on the meds before you take the ENT tests, so in the meantime, try and relax and not worry, stress makes all this stuff worse. Its normal to feel really anxious when you first get this condition. Insomnia is a huge part for me too. Also, my very first bad vertigo attack came on the morning after drinking a lot of red wine. We are still trying to work out on here how much the fluey type symptoms go along with MAV. I get all that, but had a diagnosis of ME on top of it, I am still trying to work that one out. Keeping a diary helps. I got dizzy spells and vertigo attacks at random, no head pain, then I noticed that often there would be bad head pain two days after the bad dizzy day etc. You have found the right place here, we are all in the same boat and its often a rough sea! Welcome aboard!

Christine

16

Hi Christine,

So you have been living with these symptoms permenantly for all this time? I suppose there is nothing I can do until I go and see the specialist and hope to get some answers from that.

I wake up in the morning feeling like I am moving now with my eyes closed, something that I did not reallty feel at the start the rocking motion etc didnt seem to be there until I got up and then it started. Every symptom that doesnt feel normal scares the hell out of me - I dont like feeling different, I freak out when I get colds and hangovers are the absolute worst. I’m pretty much worst case scenario with anything that puts me out of my comfort zone.

The thing is I know I have anxiety because I have being able to control many of the symptoms from the past and they just went away with time, I would get anxious in sitatuions and then after I managed to calm down they would just go away. I suppose I am just worried that I am creating some of these symptoms in my head and making myself worse because I am constantly worrying and thinking about dizziness. I guess my dizziness feels like I am moving but I dont really have any visual movements. Feels like all of a sudden my balance starts going and I’m back on a boat again :confused:

I really hate not being able to feel safe anywhere though, the constant fear of whats going too happen. I like to be able to take care of myself and have my own responsibility, I just dont even feel like I can take care of myself anymore. Everything I worked so hard for has shattered into a million pieces.

17

Jimmy,

I know how it feels when this takes over your life and you feel there is no way out at the moment, but things will get better. Many people on here are 95% better on the correct medication.

I would try and take your mind off things by watching a good film on the telly while you are waiting for the ENT appointment. With a lot of us this problem started with a load of stress, so try and switch off and rest.

If you think you have a blood sugar problem, make sure you eat something, preferably with protein every 2 or 3 hours, I found out I have reactive hypoglycemia as well and that can make you go really dizzy if you dont eat regularly. Check out the symptoms. I can often make myself feel a whole lot better with half a painkiller and some protein.

So you can go to bed without feeling too bad and get to the shops and get out for an hour, I would try a half of a painkiller (I used veganin), or even a quarter of one, just to give you some help until you get to the ENT. You can see if it has any effect on your heads or/and the dizziness. You probably find that when you have the bad head, the dizziness goes, thats how it often is. They wont want you on painkillers when and if you take the preventatives, but for the time being, small amounts might help.

There is a book we all swear by on here called “Heal your Headache” by David Buchholz, its worth getting. He talks about the dizziness and weird other symptoms we can get with this condition.

At the moment you dont know for sure what the problem is, ears or head or maybe both, but it does sound like MAV. You arent alone with this, we are all here to help :slight_smile:

Christine

18

— Begin quote from “jimmyc123”

What are your thoughts, if any?

— End quote

Jimmy, welcome. The first thought that occurred to me is that you need to stop drinking, completely. Alcohol is a major trigger.

19

Thanks for the reply - you are right I dont know what the actual problem is so I will just have to wait it out. The fear is just the worst, so difficult to relax but I am really trying to - I still dont feel comfortable sitting up. So I just have my laptop pretty much whilst I’m lying down, getting up here and there when I can.

I have always thought I had hypoglycemia but I had a diabetes test and nothing came of it. I always get nervous or panicy when I have not eaten, its like I crave food and I start feeling really wierd, but my bloods are perfectly okay everytime they have been checked :?

And Tim I have not drank since the onset of these symptoms, I dont plan on doing so either - a life without alcohol doesnt bother me in the slightest if it means making these symptoms go away. Although I must say its the only thing that ever makes me not care! I wish I could just drink half a bottle of whiskey right now, i’d probably get some sleep! :smiley: