Have been suffering with balance problems for the past 5 years and feel so very desperate.
It all started with room spinning vertigo. This was diagnosed as BPPV and as I had had this 10 years previously for 6 weeks I thought wrongly that I would make a full recovery and it was only a matter of time before I was well again.I only had 5 or 6 sessions of true vertigo in all of this time. Had many mini spins which lasted about a second.
The vertigo stopped about 2 years ago but now am left with an awful off balance feeling. I feel drunk all the time. I am unable to function and cannot work. I am 55 years old and feel as if life is not worth living.
I have sought many medical opinions, my GP says stress, Neuros have said some sort of inner ear problem but could not give it a name. They said that they think the wiring has been damaged between my inner ear and my brain??? I was told to go away and live like this and just be grateful I dont have anything terminal.Have seen the inner ear consultants who said BPPV initally but could not give me any further help. I feel very very let down by the medical profession.I attended a Neuro gym but the sessions did not help.I make myself walk for 45 minutes a day. Have done many vestibular exercises but got no relief. I make myself be as active as possible.Have had MRI and nerve conduction tests which were normal.
My symptoms are as follows
constant state of imbalance
stiff neck/shoulders
tight low grade headache (not always present)
constant vibrating/internal tremor through my body
constant tinnitus
The vibrating feeling in my body is horrid. Its like having a tuning fork buzzing in your body.
I currrently take 10/20mg Amitriptyline to help me sleep. If I increase this it just makes me too drowsy.
Have tried pizotifen - this made me very drowsy.
Am now wondering if this is Lyme. Getting accurate testing for Lyme seems like a complicated affair and the treatment is expensive.It would appear that you ave to travel to either Germany or the Staes to get good treatment. The thought of having to go abroad feeling like I do scares the hell out of me.
I have an underactive thyroid. I initally thought it was that but the thyroid meds are not stopping my symptoms. If anything the symptoms are getting worse.
Does this sound like MAV to you.
I would be so so grateful for any feedback. Just think it has to be something sinister with all the vibrating in my body.
I have everything you mention except my tinnitus comes and goes and I don’t have a constant vibrating in my body…i have what I guess you could call tremors at times mb more like a shaky weakness when my symptoms are acting out. I’m not sure if you’ve seen but there’s a section on this forum called other illnesses and there’s quite a few posts about lyme
Duchess - I am glad you found this site, but terribly sorry for your suffering. I would definitely look into Lyme. If you search internal vibrations and Lyme you will see that you are not alone. Have you read the Lyme posts in the “Other Illnesses and Conditions” section? I am here should you have any questions. I do know that finding a Lyme Literate Medical Doctor in the UK is a tremendous challenge. It is so unfortunate. Let me know if I could be of any help answering any questions, etc.
Finding a good Lyme doctor in the uk is almost impossible.
I have’nt seen a migraine specialist yet. Was hoping a neuro would have covered this. The last neuro I saw privately was very dismissive of migraine. He laughed when I suggested Lyme. “Half the forrestry workers in the country would be down with it if it was prevalent in this country” was his reply.
I seem to be spending out a lot of money and getting no where. Spending hours a day crying. All my doc wants to do is send me to CBT to learn to live with it. I want to be able to live without it. I was a sporty 50 year old until 5 years ago when the world stated spinning.
I honestly dont know which route to try next. My poor brain is so very tired of trying to figure this out.
if u live in the uk can you try to see dr. surinthean? many people on this site see him and love him- others chime in here for uk drs. please. have u seen a neurotologist or an otoneurologist?
I have seen 3 neurotologists. Two said it was BPPV and it would go away and the other did do lots of inner ear tests which did not show an awful lot. He did say I had visual vertigo though. All he kept referring to was that I should think myself lucky that I did not have Menieres.I really have tried to keep active. I make myself walk but the imbalance is so bad I end up crying while I am walking the dogs. I am surprised I have not been carted off by men in white coats.
Before you start wondering about Lyme or any other disease and shell out excess cash and lose more time, please get yourself to a migraine specialist such as Nick Silver. The symptoms you describe are not at all unusual for VM. Migraine is very common in the female population. That’s the place to start.
Sorry to hear you are not feeling too good. I agree with Scott, see a migraine specialist first and try not to lose faith, things will improve. I am a patient of Dr Silvers and I can highly recommend him. Back in January I thought my world would never be still again. After being prescribed meds by Dr Silver I am feeling pretty good. I have had a few blips but my symptoms are no longer 24/7 like they were. I’ve even had major surgery in the past couple of weeks and the MAV is still under control.
He is extremely knowledgable, you get an immediate sense of being in the hands of somebody who knows what they are talking about Whatever is the matter I don’t doubt he will be able to help you.
I should also mention how helpful his secretary is. Lately I have had to get in touch on numerous occasions, over matters that I really shouldn’t have had to bother him with, e.g. my boss wanting to know what exactly was meant by a phased return (don’t ask!) The latest, my GP was unable to answer a simple question about dosage so his secretary tracked him down in France and he responded quickly to my query. To be quite honest I really shouldn’t have needed to contact him if everybody else hadn’t been so incompetent! Anyway, the point I have hopefully made is that he is an excellent neurologist and will go out of his way to help you.
Good luck and let us know how you get on.
Kathy x x
You can request a referral from your GP and see him on the NHS or privately. You may have a bit of a wait on the NHS.
I saw him privately, the reason being I was able to get an appointment within 2 weeks. Think I got a cancellation! Here are his details. spirehealthcare.com/cheshire … as-silver/
Just to let you know that I too get the vibrating sensations you talk about. I’ve had these on & off for the last year, I have been dizzy for 2 years now. I definitely have vestibular migraine. This condition throws up loads of weird symptoms, this forum has been a godsend, just when you think you have some strange symptom you can guarantee some other poor bugger on here has it too! Seriously though, this forum is a lifesaver, I’ve only good things about DR Silver so best of luck! Xx
you are not alone in this, I have exactly the same symptoms you describe although my internal motion sensation is more that of being pushed and pulled than a high frequency motion.
I also have the constant drunk off balance feeling which I find so disconcerting and anxiety provoking.
I have seen Dr Silver in the north west and he has diagnosed with migraine. I am just about to start a medication trial of topirimate as well as lifestyle changes that he recommends. I am happy to send you his information sheets if you PM me your email address,
I had started on 80mg propranalol prior to going. He said to increase the dosage slowly every couple of weeks, I managed to get up to 240mg which I had no problems with. However, I’ve just had a pretty big operation and my bp dropped so have decreased it slightly down to 160mg. I intend to go back up to 240 mg. The drop in bp I think was more down to my recent surgery than the propranolol.
Dr Silver will provide you with lots of information, will answer any questions and will also write a VERY detailed letter to your GP. He provides a clear outline of the meds that you will trial including possible side effects!! Don’t worry too much about them! My second choice of med would have been Topiramate and third line would have been sodium valproate. I was also using a vagus nerve stimulator, it’s a hand held device which was proving to be pretty helpful. Unfortunately I haven’t used it lately as I’ve been in and out of hospital. I will be resuming use of it though and will post how i get on with it. Here is the link if you want some more info about it. electrocoremedical.com/gammacore
Please do bear in mind, this choice of medication etc is specifically for me, taking in to account my symptoms/other meds taken. He will be very thorough and ask a ton of questions but will find something that helps I’m sure
Richy, I’m glad you finally got to see Dr Silver. I hope things are improving for you. It does take a while but you will see an improvent I’m sure.
hi there- Dr Surenthiran would be another option in the UK - his clinics are london or kent - he can be seen on nhs (prob a long wait) or privately.
In the meantime is it worth you starting the migrane diet? - you can get a copy of this via the heal your headache book, or online here probably. If it is mirgrane related that might help, and is prob what Dr S would ask you to start doing anyway if he diagnosed MAV.
I am taking nortriptyline - it makes me drowsy so i take it at 6pm to try to sleep off alot of the side effects,
My MAV seems to be particularly caused by hormones.
Keep asking the questions, and getting the support from this site - its invaluable.
cath
Just thought I’d chime in too. I am a patient of Dr Silver, I see him on the NHS. I had to wait about 11 weeks to see him but it was so worth the wait. Like KathyD I am currently on a high dose of propranolol and it is helping. He is VERY thorough in his questioning to assertain you have migraine. He leaves no stone unturned. Myself and my GP have copies of his detailed letter which gives the treatment plan and lifestyle measures to follow. I actually emailed him originally to see if he thought it was worth me trying to get a referral and he replied to say he strongly suspected my symptoms were caused by migraine and then gave details for a referral. I showed my GP the email conversation and she happily referred me.
My main migraine symptom is visual vertigo where movement in my visual field bothers me. I also get a feeling of motion inside my head. Mine started 5 years ago and for the first two years the motion in my head was mostly a vibration. I had many doctors (ENT, audiovestibular consultant) look at me with a bemused look on their faces when I described this vibration feeling. Dr Silver was the first doctor who understood and didn’t think it at all odd.
Whatever is the matter I don’t doubt he will be able to help you.