Has anyone finally been freed from dizziness?
I thought I would be brave and start living my life again and it is not peaceful going out, in fact, pretty scary at times.
Today 5 minutes after getting to church I had to run out.. I could feel the pew moving and the church starting to bob around.
I am soooo sick of this and feel like I should just stay home and give up.
I already gave up on drs because none of them know the answer and all have different ones.
Hi cherry i dont know ive been suffering for a year now constant feel as if my life is over ive seen quite a few drs and been no help at all ive lost my job i know how you feel its seems never ending im on nortriptilene and having acupuncture for 6 mths and am still the same x
I thought I was getting better but I haven't taken tablets today and it's just as bad as it was before. I had a fair amount to drink yesterday so I can't really take a tablet today but it's absolutely awful, I don't feel anxious though because I know what it is. I'm really worried now because I'm going back to work tomorrow and I am ridiculously dizzy and I use screens all day 
don't worry guys, I think it takes a long time to get over, or so I'm told.
Well I have had this issue since oct 2011 some days are better then others. No you should not give up because if you don't re train your body it will stay the same it almost sounds like I'm the only one that deals with this everyone needs to get out of bed and go do things the longer you stay on your back in bed the longer the process will take to get better .you 100% need to do the exercises that I'm sure the doctors told you about .it was hard for me very hard but I have young kids and they need me so I refused to give up I have been working since January 2013 if I feel good or not. I could hardly stand my balance was so off I get lock jaw. I still get dizzy. No where near as bad but you need to work through it. Just remember we still have a shot we aren't dying .and please stop trying to figure it out it will make you crazy
I know what you mean, it's driving me crazy too. Church is one of the worse for me too - I think it's the standing for the hymns. Is your dizziness anything to do with blood pressure or heart rate. My gp thinks mine could now be POTS (plus migraine vertigo sometimes) Be strong - think that we may have a better day tomorrow. But I know what you mean. This affects every area of our lives! x
Hello Cheryl, Ben here.
Please believe that you will get better. I am in month 16 and I am begining to feel very close to myself again. I just have some Strabismus ( wandering eye). And I have a lot of confusion from the "compensation" process, which impedes my ability to think quickly and clearly. I have better days than others, but all in all I am way better than I was a couple months ago. Please have faith in your body's ability to rebuild itself. Also keep positive about it. One way to stay positive is to be glad it's not a deadly disease.
Remember that we each grow at our own pace. So it only stands to reason that we all recover at our own pace. Just because the government lumps us all together, say by age, like they did for school, or says we should be over something within two weeks, doesn't mean that we all go at the same pace. Some are faster than others and some are slower, that is why some terms have been coined like " the cream rises to the top" and we're not talking about milk. It just means that we each have our own personal level of living this life and it's not the same as everyone elses. Take heart that the spirit that drives us is good and although we might not understand it all the time, our bodies are doing pretty great things just by being alive.
Now, lets make sure of a few things to help with the belief system.
1). Check your diagnosis to see if it fits the pattern of the symptoms that it's supposed to. Google everything. Ask questions here on this forum.
2). Look at the tests you have taken and see if all the bases are covered. Remember dizziness can be caused by so many different things, from a heart beat to a fever. A vitamin deficiency can start it, but maybe it's a migraine or cervical stenosis at the heart of it. Just because you have dizziness doesn't automatically mean that it is coming from your inner ear.
3). Don't expect rapid changes, from what I have seen and experienced it takes a lot of baby steps to get to where you can walk like an adult again. Don't try to rush the recovery, it's going to take as long as it takes. --BUT--
4). For sure do the exercises, just make sure you are doing the correct ones for your diagnosis. ie; don't do BPPV exercises if you should be doing VN exercises.
5). And last but certainly not least, keep a positive mental attitude on your outlook. Keep company with only those that care and are willing to go along with your positive thinking. Make jokes about it to keep it in perspective, it could be a lot worse. Do those things that you can do, that are fun for you. We only get one go-around in life, no matter what hand we are delt, make the most of it. If all you have are "Lemons", make Lemonaide or Lemon Pie or Lemon Pudding etc etc etc.
Please believe that the human body is a miracle and that it will take care of itself if given a fair chance. I see people smoke and drink and race around in fast cars, and somehow they survive. Our bodies are pretty remarkable.
I hope you will find solice in what I have written here and feel better about yourself as a result. I am on your side, I'm pulling for you. Ask, ask, ask and ye shall be answered.
Take care Ben
Go over a few simple things if you have not already. Get a blood test and have your Iron, Magnessium, B12, and vitamin D level checked. If any of these are low it could make you dizzy. Go to an ENT and make sure it is not an inner ear issue. Look into TMJ which is a jaw condition and look into SCM Muscle which is a muscle in your neck. Both TMJ and SCM muscle can make you dizzy. Remember to stay calm and don't get upset. If you give the dizzyness life it will get worse.
Hi Cheryl, Ive been fighting with it like you for two and a half years. The jumpy eyes have gone but the dizziness remains. Ive now got my own specialist to add to the two neurologists and Im keeping a diary of the dizziness which basically is every day. Its going to be reviewed in three months. Im having a rest from all the medications which have come to about 9 by now. They still think its MAV, but who knows. I wish there was a definitive test they could do to find out. I think they all just guess. You have to keep going and try and enjoy what you can out of life. I know its hard, and the fact that people dont understand doesnt help cos theres nothing to see. I find it better when Im at work than when I give in and go to bed but its so difficult. Youre not on your own, we are all there with you. Maybe going out will get easier for you as you get used to the strange feelings and not be so scared of them. Your body should start to heal itself too, so you will see an improvement it just takes time. Hang on in there thats what Im trying to do.
No I do not have POTS (been checked) but through my own research I think I could have Migraine Vertigo.. I wish I could find a dr that could figure it out because I suppose that would give some peace plus maybe work on the right diagnosis.
Thanks for all your information and words of hope. I have had B-12 and D checked.. Not Magnesium though.. Vitamin D was low end of normal.
I, myself think possibly Migraine vertigo also some other things I've researched since they are so alike.
You are right about the correct exercises because I went to Vestibular Therapy withOUT a diagnosis and within 3 days I was so much worse and have been like that for almost 2 months.
I can say I do want to rush healing because at this moment I am going crazy with missing life and having to rely on others when I am the one who always took care of everyone and the worst of it the HORRIBLE feeling!!
I wish I could have a diagnosis and the time it would be gone but don't we all?
Cheryl
Yes I can say the fear of the feelings in public can send me home quick.
How did they come to conclusion of MAV?
I've come to that on my own as one of my theories.
Cheryl
I saw the GP initially who said I had an ear infection but when nothing changed, I was referred to ENT and they did an MRI scan. They did balance tests and they were all OK so they sent me to a neuro surgeon as it showed a prolapsed disc at C3, He said that wasnt the cause and referred me to a neurologist. By then I had two panic attacks as I thought I had MS. I managed to get an urgent appmt with first neurologist who when I told him I was dizzy all the time, had a creaky cracky jaw, had pins and needles in the top of my head and my cheek hurt. I had jumpy eyes and sometimes get pain in the back of my head as well as some bad headaches, When I do in some lights I feel like my eyes are being pulled out. Loud noise bothers me too.I was having trouble with PCs but thats gone now. I have found anxiety makes it all much worse. Im at my best on holiday. I used to have aborted trips to the shops but now I can shop for quite a while providing I can cope with the lights. So with all that he said I had silent migraine. All the neurological disturbances all the time but not the headache all the time. My doctors are at salford royal in manchester. I was thinking of being referred to a dizzy clinic. There is one in liverpool.
I do have MS and have dizziness with it but this is different.. I know it is something else and after years of MS also know not everything can be blamed on it.. 2 Neurologists also agree it is not from MS..
I was thinking either something in my neck or Migraine or both. I have no headaches but I have problems with lights.
I am on break from seeing drs because I just can't bring myself to waste time for the 6th time but I know I will try again when I regain my hope in them.
Do a search for The Sternocleidomastoid Syndrome, it may be your issue.
Have you thought of giving up alcohol? I've given up everything I thought may trigger it. I'm scared of going back to my normal life, in case it brings on another attack. Agree about Dr's who can't seem to do anything about it. I believe More Research would be good as they don't seem to know what to do about it.
Hi Paula,
My symptoms sound very similar to yours. I also live in the UK and am awaiting the results of my MRI/MRA scan. I have seen an ENT specialist who diagnosed VN but was later referred to a Nuerologist. He also mentioned something about silent migraine. I am off to see him again on monday to discuss the results of the MRI/MRA scans, can I ask what MAV is?.
Best wishes
Hi Lawrence
MAV is migraine associated vertigo. I have to go back in three months with my migraine diary, this week I have had a headache every single day without fail. The dizziness is till there also, My hubby said I have the dizziness from lying on the bed every evening when I get in from work, but the last two nights I had loads of stuff to do and couldnt flop, and was still dizzy so nothing to do with lying on the bed, Keep in touch Laurence, would like to compare notes.
Hi Paula,
I get pains around my head and a pins and needle sensation, but this does not usually last all day and some days are better than others. I also feel like I am on a boat with a swaying motion. Unfortunately I have not been able to work for the past 4 months because of the dizziness.
I get my MRI/MRA results tomorrow from the neuroligist, I have many questions to ask him if they come back clear (and also if they find something). At present my diagnosis (by ENT Doctor) has been described as Vestibular Neuritis but I'm not so sure. The best position I find to lie in is face flat down with my head turned to the right, propped up on pillows is not so good for me. I also find that travelling in a car as a passenger makes me feel a little better, this is different to what other VN sufferes have described.
I do suffer with hay fever and am wondering if this has made my condition worse?
I will let you know what the consultant says.
best wishes
Hi Laurence - how did you get on ? I think they are giving me gabapentin next. But nothing else has worked so not holding out any hopes. I wonder what all this stuff is doing to me. My pins and needles dont last all day, its just a recurring thing that happens for a few seconds quite often.
Hi Paula,
I saw the Neurologist and both my MRI and MRA scans came back clear, In fact they told me that my brain looked very healthy and is what they would expect to see for someone who is 20 years old (I am now 55).
The neurologist has spoken about using Gabapentin or some other pill that i can't remember the name of (it began with T). He also thinks that I am suffering with Vestibular Neuritis (as the ENT specilaist originally stated). He is going to prescribe streiods for a two week period.
The pins and needles around my head come and go but on occasions is there all day (this may be due to allergy?). I am dizzy most of the time but this varies by degrees over the day.
I have been doing the VRT exercises as instructed by the specialists but these do make me dizzier so I try to be careful about how much i do.
I suppose I have to accept that the condition is VN as I do seem to have most of the syptoms described for this which is echoed in comments on the forum by other sufferers. I Have listed my syptoms below:
Dizziness (like swaying motion as if on a boat, also tend to want to veer left when walking)
Occasional pins and needles/soreness around head (also had this in my face at one point)
occasional pains around head
occasional upset stomach
weakness especially in the legs
occasional nausea
flickering/jumpy eyes
occasional blurred vision
Difficulty in watching some movements on TV (when camara is going all over the place as this makes me dizzier)
anxiety and low mood
difficulty in using the computer for long periods (this makes me dizzier)
Diffilculty in being in conversations with more than one person (can't concentrate)
I also get 9occasionally) that feeling of my eyes being pulled out as you describe
I did go to the dentist when suffering with the pain in my face but my teeth were all fine. The accupuncturist i see told me that he thought i was grinding my teeth and this was causing the problem.
All the above does seem to bear out that the problem is VN.
Hope you find an answer to your condition soon, have you been told what they think it is I would be interested to know? Did they diagnose MAV?
Best wishes
Laurence