Hi. I have been suffering with vertigo/dizziness (mainly swaying feeling) for 11 months. The past few months my head has been very strained and tense and I have been getting headaches everyday. I can feel my whole brain in my head (mainly the top and back) and my head often pounds. Looking up my diagnosis of vestibular neuritis (VN) explains many of my symptoms of the past 11 months but I am getting used to the dizziness and fatigue but the head pain/pressure/strain is far worse than the dizziness now. The symptoms I am experiencing at the moment seem to be that of migraine associated vertigo (MAV) as the symptoms people are explaining for this seem to better explain what I have been experiencing the past few months .I wake everyday feeling dizzy and with a very strained head like my head is too small for my brain and it gets worse untill I get a headache (my whole brain aches). The past week or so the headache goes by the next day but for a while it would take two days or more to go away before returning again.
I have had a X-Ray of my neck (clear), Eye check (needed glasses for first time), CT-Scan of head (clear), Paid to see private ENT specialist (said not much he could do. Suggested as fatigue is so servere and I am a heavy snorer for me to have a sleep study. Results say I have severe obstructive sleep apnoea AHI 32), Seen an NHS Audiologist (all hearing, eye, balace tests don't show any problem with my vestibular system/balance system)
I am waiting for an NHS basic sleep study before ethey consider me for a CPAP machine for sleep apnoea. I have an appointment to have an operation to have a deviated septom corrected as I cannot breath very well through one nostril. I also have an appointment to see an ENT specialist on the NHS in April. When I see my GP soon I will ask to go on the waiting list to see an Neuro-otologist as they specialise in the brain and migraines. The past few months I have cut out caffeine from my diet and I eat very healthily attending slimming world and I have lost 6.5 stone in 16 months. It has not been easy loosing weight when I have been ill and feeling low but I have made it my missin to loose weight since becoming dizzy. My heart goes out to anyone with this condition. It is an invisible illness and most people don't understand or believe you are unwell. Please stay postitive. My life has changed dramaitcally the past year and I am house bound most days but I have learnt to appreciate the little I can do and the great friends I have. My hope is fading that someday I will wake to find this problem has gone but at least there is some hope still within me. Take care my dizzy friends and may we all recover from this hell in 2015 x
well done for losing weight, really well done.
Thank you anne05147. I do appreciate the kind comments I have had on my weight loss. I walk into the slimming world group every week and people say I have done so well and that I must feel great. This couldn't be further from the truth but I know loosing weight is a positive thing health wise and this is not the reason for my dizziness issues.
I forgot to mention that my GP has recently admitted that my last couple of blood tests show my thyroid is a little high and I will be having another blood test soon to check again. I hear that a high thyroid can cause fatigue/tiredness.
Hi Jason
I have had the same now for over two years. It took almost a year to get my diagnosis but was in some way a relief as I thought I had MS. My symptoms are exactly the same as yours and it is silent migraine. Ive had many different tablets none of which work at the moment. However I have had botox at the migraine clinic in London which helped the headaches a lot. Im waiting for more botox on the NHS but have to try more medication before they will let me. I find stress makes it miles worse as you screw up your forehead which irritates the corrugator muscle which in turn irritates a nerve running thru your head, face and back of neck. Keep a migraine diary. I suppose I have given up on ever not being dizzy but if I keep really still, its not there and I get some relief. As soon as i move though its back. Its worse with lighting, PCs and noise. I feel quite sick sometimes and unfortunately my job went full time and I had to give that up. Im now looking for another part time job. I dont know where you live but Im under Salford Royal Hosp who have some of the best neurologists in the UK. Dr Zermansky runs a head ache clinic and the botox. I hope you get yours resolved. My social life is nil but Ive managed to get back shopping which I couldnt do at all last year. So some improvement. I didnt know this dizziness was so widespread. I felt really alone and lost my best friend over this. I read dieting can trigger the dizziness. Best wishes to a cure for us all.
Hi Paula. Thanks for your reply. I am sorry to hear you have been suffering with this for so long. I know that sympathy does not help at all. I live in Cardiff. I spend way to much time on the pc since being ill and I know this does not help. I stopped doing my weekly food shop at the supermarket months ago. It was too much stress for my head. Thank god for home delivery. What medications have you tried and will be trying?. I am quite a hyperactive person and would say I am or was a stress head. I am bi-polar but have been well on medication the past few years. I have been reserching my mental heath medication and there are alot of people mith similar symptoms taking cymbalta (deloxetine) anti-depressants but mainly when they are withdrawing from it. I have tried slowly reducing my medication since becoming dizzy and spent a while off mediaction but the problems still percist and things are getting worse not better. My consultant pschyitrist thinks my medication is not the cause of my problems. I infomed him that in the begging of this dizziness I felt much better at night after taking olanzapine and epilim (sodium valproate as a mood stabaliser). I have seen that some people are given anti-depressants and even epilim to treat their migrianes. When it comes to my diet I eat more than I used to and enjoy more veriety than ever. Apart from not eating ready meals and takeaways I still eat a very varied diet.
Yes you certainly learn who your true friends are when you are ill
Just like to add I have never been sick or had nausea/feelings of wanting to be sick since having this problem.
no, it's not the reason for your dizziness issues, the plain fact is unfortunately, that for all us who have this problem, nobody really knows the answer. So long as i can continue to function at my current level, because when it was at its worst i couldn't even stand up, then that's a bonus for me. Although we might not be able to find a cure i do think that i am trying to find a way to adapt as best i can because i have gone beyond hoping it will go away completely. So when i have a good day i try to get things done and when i'm having a wobbly day i try to do things a bit more slowly. In my experience there was a definite beginning. Went to bed one night fine and woke with the world spinning around. Then there was weeks and months of going to ENT and no better off, paid to see one privately who just said 'carry on as normal'. I think the biggest challenge is trying to compensate and the brain is trying to do this all the time, for some it may come easier than for others. I view it as something has gone wrong on my hard drive, like a computer, and i am trying to find something within myself to get my balance back on a day by day basis. So i am just doing this one day at a time and whatever tomorrow brings is another story. I no longer plan too far ahead because i don't know from one day to the next how i will feel. I still manage to go to work as i thought i couldn't continue, all my colleagues are aware of my problem because sometimes they notice me walking into door frames and losing my balance, but as it stands i can cope. It it ever comes back as bad as it was when i had to take time off work cos i couldn't stand up without clinging to the walls then i will need to review the situation. What i have learned though is that i haven't got anything fatal, all tests have come back normal and as another poster mentioned i also thought i might have MS. I believe it is definitely related to my left ear and neck and spine. I have a stinking cold at the moment and my left ear is squeaking whenever i blow my nose. I also had a head injury 18 years ago which left me with neurosensory damage to my left ear, and am being told by ENT that i have probably always had this problem since that injury but not noticed it until it got this bad. I suppose the damage was cummulative over the years.
Wishing us all the strength to keep on keeping on. God Bless.
neither have I. Grateful for that. Initially I was given prochloperazine to help but i think this is mostly for sickness which i don't have so stopped taking those as they were doing nothing. Then i was given Betahistamine which did nothing either. Then i was told to try to the MAV diet, nothing changed. Now i just try to do everything in moderation but i do know that looking upwards and reaching upwards really triggers off my unsteadiness and also supermarkets and airports.
Hi Jason
I have had the same now for over two years. It took almost a year to get my diagnosis but was in some way a relief as I thought I had MS. My symptoms are exactly the same as yours and it is silent migraine. Ive had many different tablets none of which work at the moment. However I have had botox at the migraine clinic in London which helped the headaches a lot. Im waiting for more botox on the NHS but have to try more medication before they will let me. I find stress makes it miles worse as you screw up your forehead which irritates the corrugator muscle which in turn irritates a nerve running thru your head, face and back of neck. Keep a migraine diary. I suppose I have given up on ever not being dizzy but if I keep really still, its not there and I get some relief. As soon as i move though its back. Its worse with lighting, PCs and noise. I feel quite sick sometimes and unfortunately my job went full time and I had to give that up. Im now looking for another part time job. I dont know where you live but Im under Salford Royal Hosp who have some of the best neurologists in the UK. Dr Zermansky runs a head ache clinic and the botox. I hope you get yours resolved. My social life is nil but Ive managed to get back shopping which I couldnt do at all last year. So some improvement. I didnt know this dizziness was so widespread. I felt really alone and lost my best friend over this. I read dieting can trigger the dizziness. Best wishes to a cure for us all.
When I look back in my migraine diary I can see how much I have improved and how much better I was when I was at work, I think it took my mind of it. The fatigue I first had has improved which I think has come from pushing myself to work four full days a week. I noticed if I withdrew to my bed on the friday, I was worse than if I forced myself to go shopping. Now Im not working, I want to lie down all day but am making myself do stuff and am actively looking for another part time job. Its very very hard as I do feel dizzy all the time and sick and as you say, its invisible so no one understands. Ive got an interview and with this condition, Ive got brain fog. I cant conjugate a sentence. I cant think of the words I want. I think the tiredness is because your brain is constantly trying to fight against the dizziness and righting itself. Brilliant about losing the weight, Ive put two stone on as I gave up dancing and ski ing. Mention silent migraine to them, might be that. Its migraine without the headache or sometimes with it (buy one get one free !).
Anne the way you are dealing with this and your views are exactly the same as me. I am trying to do as much as I can and live with this but the good days where I feel 70% better are becoming fewer and further between. Today I am much worse than yesterday and it was a struggle to cook and wash but I am greatfull I could manage and I have a great sense of acheivement after doing so. At this very moment my head is getting more strained and dizzy by the hour and I know it will quickly get worse and it will take days to weeks to feel a little better. I think it's amazing that you still work with this condition. I have always thought women are much stronger than men when it comes to illness especialy.. I try my best on the worst days like today to relax and not expect much from myself but family and some friends just don't understand that I need to lie in, sleep or be left alone. It makes me feel selfish especialy in my realaionship with my son I have at weekends. He is 13 and if an adult doesn't understand my condition I certainly don't expect my son to at his age to understand. To understand this condition would be to have this condition and I wouldn't wish that on my worst ememy. I have done much less with my son over the past few months and my worry is if I get worse he will no longer enjoy spending time with me. I am doing my best to become friends with this condition and try to understand it instead of stressing myself out and making things worse. I have always had trouble with blocked sinus's especialy in my nleft nostrill which is partialy blocked due to a deviated septom. We do learn just how strong we are when faced with illness. That said we do not have an option as live goes on regardless. The only other option is not a road I wish to go down. We have to appreciate what health we do have and be glad we are alive at least. I do not ask for much from life. Just to feel well/normal again and enjoy spending quality time with my son and get out walking my dog. I can't see much getting any worse for us only beter I hope. Like they say don't pray for an easy life pray for the strenght to endure a difficult one.
I have also been on these tablets and also cinnarazine. I found none of them to help at all. I still take cinnarazine though. I am currently on an MAV diet for 3 weeks but no change also. I only get more dizzy when moving, bending and tilting my head back on days like today when I feel worse but 4-5 months ago I did not feel this way just felt off balance and swaying all the time. Always thought when I had bad few days/weeks it was probably recurrent BPPV.
have you tried explaining it to your son, he may be more understanding than you think, he is the closest you have to uncondtional love.
I have was taking co-codemol and ibuprofen all day everyday for the headaches but since reading that taking pain killers too often with cause migraines/headaches I only take them when my head is at it's worst which is once most evenings.
Jason, i don't think personally women deal with this any better than men but i think it is possibly harder for men because women may be more sympathetic towards one another, but then a male colleague said to me the other day as i was going a bit wobbly down a staircase, 'are you alright today mate?', which i thought was observant and kind of him. I had to tell my colleagues at work i was having this problem because sometimes i felt it was noticeable, but really most people wouldn't know unless you told them, i was just concerned that people might think i was drunk on the job and as a nurse that would not be good. Anyway I just tell everyone now if i am having a very dodgey day that i have a balance disorder and leave it there, because on a few occasions i have seen people looking at me in a funny way, i think it's when i am started to lose focus with my eyes and start swaying. I have to look downwards to keep my balance.
i think that was in relation to paracetamol, but taking ibuprofen and NSAID which ibuprofen is also can also cause kidney damage and indigestion. I am on naproxen for trapped nerve in neck which can apparently wreck your kidneys but i will ask my gp to check my kidney function as right now they are the best thing i can take for my pain relief as really work well for me, but also increase dizziness. What you supposed to do? Since i've had this cold past 2 days i've been taking Lemsip max which has helped both so have cut back on the naproxen, but hen neck pain started niggling again tonight so took the naproxen as i need to drive and without the naproxen i can't turn my neck in the car etc., I don't like taking anymore meds than i need to and have now ordered some tumeric online as this is supposed to act as a good anti inflammatory so long as it has black pepper included to increase its efficay. What a game, but i'll try most anything if it helps with limited side effects.
Thanks. I have been keeping a brief diary on and off but need to start being more thorough and consistant. I too feel sometimes I am a little better keeping more active even though I am usualy worse after for doing so. I do need to try and walk out and about more. I was doing and walking more than ever when I first got dizzy as I heard It was the best therapy to retrain the balance system but after a few months things got worse and for 2-3 months I have a little exercise. I know I need to get out there more but even on the best of days waliking is the hardest thing. When I walk up the road my brain feels like a swinging pendulum. At this time of year it is even more on an excuse not to get outside. I have read that exercise is a natural pain killer and will reduce migraines. Yes we all love buy one get one free but this is more like buy one get five free! lol
Thanks. Yes I have explained to him. He is ok but it frustrates him sometimes. His love is unconditional as well as my jack russell's. Don't know how i'd cope without my little dog lol.