Off balance and dizzy

[HoneyLove]

Ttff44 I have some similar symptoms to yours, although perhaps not as extreme. I was initially told that I had labyrinthitis, but it turns out I may have chronic migraine associated vertigo instead. I have not seen a neurologist so it has not been officially diagnosed, but my VRT therapist thinks this is a likely diagnosis.

I can give you some links to articles on MAV if you like? Perhaps you could discuss it with you neurologist.

[ttff44]

Is your balance/ disequlibrium pretty much constant though, except for when sitting? I do get sudden whirls where I have to grab something or fall, but those are short and brief, the disequilibrium though never seems to let up ( maybe as far as severity ) but is a constant and standing still, talking, showering, head movement and neck makes it so unbearable.

27 years ago I started having auras, then a migraine, oddly, in my later years, I am 47 now, I do get auras ( visual ) but no headache AFTER, now i do get headaches, some horrific ones, but NO aura before them and it just seems if it was MAV, the disequilibrium would not be constant.

I appreciate your responding so much. Can you give me details of your symptoms compared to mine, it would be so helpful......

[HoneyLove]

Yes with MAV you can have constant balance problems. I'm not sure exactly why this is, my physio did say that this type of migraine can cause damage to the inner ear or it's possible that it overlapped with labyrinthitis which may have damaged the inner ear either. He also said that because of the weakness in your balance system even a small problem like a cold can cause more symptoms.

My current bout of balance issues has been going on since the end of November.

At the moment it feels like I'm constantly drunk, you know that feeling when you're a bit off balance and wobbly. Thankfully this is slowly improving with the VRT, it's much better now than it was a couple of months ago. So I have this constant imbalance but also patches of worse dizziness where I have that feeling you get where you spin around and the lie on the ground, like a spinning sensation in my head but never full on room whirling vertigo. It can be different for everyone.

Sometimes it feels as if my body is rocking, and sometimes it does rock a little bit.

Movement makes it worse, so yes things like moving my neck around (especially looking up or down) will make me feel bad but as times goes on I can tolerate this more. The movement feeling is weird sometimes, it feels like electricity in my brain when I move my head, it's horrible.

My vision is often blurry and lights seem dazzling, especially when I have been active and walking about for a while.

Busy areas with lots of movement are difficult and make me feel worse.

The world bobs up and down as I walk, especially things off in the distance.

Travelling by car/bus/tram or walking about I feel mostly fine, but afterwards I will feel a lot more dizzy. Again this is slowly improving. Sometimes I'll feel a bit nautious during travel, but it's never bad. All of this is basically motion sensitivity.

Sometimes watching movement on TV is difficult, like shows where they're filmed on a handheld camera. Makes me feel awful.

Sometimes it can be difficult to focus on something in front of a busy background.

My hearing can be very sensitive at times, especially when I get dizzier or tired, small sounds seem loud and almost painful, very irritating to my ears.

Reading is difficult but getting better.

Using computers is difficult, this one sucks because I use a computer all the time at work so it's tough going.

Sometimes it feels like my body is vibrating, and a couple of months ago I was often getting a vibrating sensation in my head. In time this is going away.

When I lie down at night I will often feel like my head is spinning, this will calm down but start up again when I turn over. Again this seems to be fading.

I too sometimes get the issue of forgetting words or using the wrong ones, my concentration is often shot and I have really focus to get something done.

I have issues with anxiety because when I start moving everything seems and looks a bit weird, so naturally my body panics a bit. I'm learning to deal with this and not allow the anxiety to escalate since I understand why it's happening.

I often feel nautious first thing in the morning.

Sometimes I get long patches of brain fog where my reflection will seem more real than I do.

Looking at patterns is really weird and disorientating.

Both of my ears ring almost constantly but they get louder when I'm dizzier. I also hear a pulsing sound in one ear sometimes, it's my heartbeat but it sounds like a whooshing noise.

Most mornings now I will wake up feeling OK but after a little while the symptoms come on, especially when I go outside where there is a lot of movement and activity. If I pace myself and take breaks a lot then I can manage it. By the evening time I am absolutely exhausted and all my symptoms are worse. This is normal though.

Different things can all make it worse: bad sleep, illness, anxiety, low blood sugar, at night my reflux acts up and affects my sinuses which make it worse too. I sometimes get bouts of gastritis and this makes it ten times worse again. I've also learned that too much activity without taking proper time for rest and relaxation will also make it worse. I have to pace myself.

The VRT exercises bring on the dizziness, but they are supposed to. Often I will feel worse for the first week of starting a new set of exercises but this dies down and they get easier. I know a lot of people feel that they are not helping or that the exercises are making them worse, but studies have shown that they are of benefit to people with MAV. Some people say that until you have the migraine issue under control there is no point in starting VRT, but I think it's different for everyone and I have definitely found them helpful.

I'm also putting some of the migraine lifestyle measures into place, like no caffeine and few stimulants like sugar, no painkillers, regular bedtimes, lots of water and cutting things out of my diet. I now do daily relaxation practices like meditation and often some yoga too. Once I'm a bit more tolerant of movement I will get more exercise in as that will also help. I'm also learning to deal with the anxiety it brings on by trying to accept the feelings and also accept the dizziness instead of getting frustrated with it - obviosouly this is hard but it's helpful as stress is a big migraine trigger.

When this first happened to me about 6 years ago I was told by my GP that I had labyrinthitis. At the time it took me about 6 weeks to get better but I eventually did. Over the years I got dizzy again sometimes when I got sick or sometimes randomly. I'm not sure what triggered this current phase, but I think it was a combination of things like anxiety/stress, bad posture, TMJ and acid reflux effecting my sleep. (I haven't been diagnosed with TMJ officially either, but I believe I may have it).

I've never had the full blow migraine headache thing. Last year I was getting a lot of what I thought were sinus headaches so I was taking a lot of painkillers and trying to figure out why my sinuses were playing up. It turns out that this may have been a mild form of migraine, apparently it can often be mistaken for sinus headaches. During the worst part in December I would also get really bad dizziness with horrible pressure in my head, feeling nautious and anxious as well as this weird thing where my right arm went all weak. These patches can apparently all be explained with migraine, but at the time I had been told it was something else so didn't even think of migraine.

Back in December it was a lot worse, they told me I had labyrinthitis again but it's become clear that this is not the problem. I'm waiting to see an ENT in August to start the process of getting a proper diagnosis, but I feel that the MAV things suits my story very well. I think I will have to see a neurologist to be diagnosed properly. It has slowly been getting better as I learn to look after myself and continue with VRT and I hope in time that I will recover fully.

Apparently people with MAV are often misdiagnosed with an anxiety problem because it is not often obviously migraine, and sometimes it can just manifest as feeling run down and bad constantly along with anxiety, so naturally our GPs think we are just anxious.

In the last few months I've learned that I am a Highly Sensitive Person and have read a lot about it, it makes a lot of sense to me. I believe that I'm just the kind of person who is easily overstimulated and overwhelmed, and since I have not been dealing with it very well over the years I've ended up in this situation with an overstimulated and unhappy brain & body. So my aim now is to calm everything down again and see if it helps. You might like to read about HSPs to see if it suits you too? It may make some sense. It seems like a lot of HSPs also suffer with migraine.

I think with your neck & TMJ issues it is not that strange that you're having balance problems constantly, they can be tied in with imbalance and migraine. It sounds like you've got a lot of complicated issues that may be upsetting your balance system. Have you been able to talk to anyone who specialises in balance? I imagine that if you can calm down some of those problems that it would help you. Are you the kind of person who is very stressed? As I know that stress can make these issues a lot worse and can also make your balance worse. It sounds like make you have a bit of a vicious circle going on with your health and your stress. Have you any stress relief measures in place in your daily life? And have you tried anything for your arthritis? An anti inflammatory diet can be very helpful for someone with both arthritis and migraine problems, might be worth looking into.

I would also suggest that you begin looking at how to get some decent sleep, as not sleeping will only compound all of your problems. I know it's hard when you feel so unwell, but it's necessary to your physical and mental health. Maybe introduce a relaxation technique before you go to bed, and cut out caffeine for a while. I often do something called progressive relaxation before I sleep, you will probably find some YouTube videos on how to do it if you search for them. Often a hot bath before bed will help you sleep better too. It might be worth learning a bit about mindfulness to help you learn to deal with your chronic problems, so that you can learn to live with them instead of being in the difficult place you are now.

Someone gave me some links to articles written by a UK doc who specialises in this type of migraine, I'll post them here for you to read:

http://www.mvertigo.org/articles/Nicholas_migraine.pdf
http://www.ukfibromyalgia.com/condit.../migraine.html
http://www.follylane.gpsurgery.net/W...c_migraine.pdf

This is a great website for inner ear problems:

http://vestibular.org/

And some info on HSPs:

http://www.hsperson.com/

I'm sorry this is long, but I hope it makes things clearer and helps you a little bit.

[ttff44]

Thank you for such a thorough response. I think I may have said 20 some years ago I was dizzy and things seemed to jump up and down, and that was so much better then what I have the last 3 years.

But I have a lot of complicating factors. I also want to say I have not had caffeine in years, I stay away due to my terrible PVC'S.

I will read the links you provided and thank you again for your response and adding those links, it is very thoughtful of you when your dealing with this yourself. I also feel guilty because I am so focused on how bad I feel and how I can't function when I used to be the ROCK of my Family, so guilt on top of the rest, and yes STRESS, Boy do I have that..............

I hope you get a grip on all your troubles too, I can relate well, as can we all here.....you are a wonderful person to share all that with me!

[HoneyLove]

You're welcome, I hope you find some relief for how you're feeling.

Don't feel guilty about being ill, that's not your fault, but you can control how you react to it and it sounds like you really need to do some stress relief work to help you deal with it a bit better. It's essential that you stop focusing so much on your health problems, believe me I know that's hard to do but it's important. It's time to focus now on what action you can take and the positive things about your life, make that your main focus and it will help you to feel a bit better xx

[george11]

Hi i have a dizzy feeling in my head but is not actually dizzy.
It's a bit like a seesaw or wobble feeling like the head is moving but it is not!!
Its like off balance on the head??
I have this feeling every day but not all the time!
Could it be side effects from meds and will it go soon??
Thanks in advance!

[HoneyLove]

I think I know the feeling you mean george, like a rocking sensation in your brain - I know it very well and it's very frustrating.

It can be caused by many different things - you can check with your doctor or pharmacist if it's caused by your medication. Did it only start when you began taking the meds?

I get this sensation from muscle tension in my jaw and neck, it's very unpleasant.

[george11]

It started when i was at the seroxat and now i am on venlafaxine!
I have the same feeling!

[george11]

I went to many ENT doctors before and they said me that i don't have a problem with my ears i don't know....

[lavender123]

I keep feeling giddy and lifeless and so so tired, I think it's anxiety worrying about everything I am going to the hairdressers this morning and I am terrified that I can't cope with putting my head back in the bowl, as it am so off balance and my heart races I think I have gone back to square one with my anxiety disorder, but if am frightened that it's not anxiety somerhing else it feels like somerhing else, I have to the hairdressers as I have let myself go to pot and I am so scared because talking and doing anything drains me I sometimes feel so bad I just cry, and I feel so embarrassed because people don't understand. I am sick of going to the doctors my daughter said to me you can't except people to make you happy, you have to do it yourself I get so much conflicting advice from my children and husband I feel as if I have come to the end of my tether trying to cope with these feelings, I stayed in all day yesterday watching a film trying to relax and chill out but it made no difference, please help. Thankyou.