Anyone else with severe vertigo?

I've had PD 9 years- well controlled with madopar, azilect, entacapone. For the past few weeks I've had very severe, completely debilitating vertigo attacks (NOT dizziness, this is true vertigo where the room swings suddenly and violently and won't stop and it's impossible to move without staggering into walls and falling to the floor ) caused by Meniere's. The drugs for vertigo are incompatible with PD drugs - my neurologist told me to try taking both but the combination left me with PD symptoms very bad and, (even worse) I became very confused. I've had to stop the vertigo drugs but the vertigo is preventing me from functioning to the point where I've had to employ a carer. (i live alone). My PD neuro and nurses say the vertigo is nothing they can get involved with; the ENT dept won't touch me because they 'can't deal with' anyone with PD. Meanwhile my quality of life is plummeting .Is there anyone else out there in asimilar situation and if so - how did you cope?

The NHS seems incapabable of dealing with more than one disease per person!

22 Replies

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  • I feel really sorry for you, I am not a PD sufferer (my husband is) but I suffer from Meniere's and know what its like. Fortunately I be am treated and mostly successfully. there is I believe a Meniere's charity, maybe they could give you some alternative advice. Have a google .Sorry thats all I can say. Good luck

  • Many thanks, I'll try and find it.

  • I have had PD for 6yrs and take no meds but have had vertigo once. I went online and did the exercises they said and within a week it was gone.

  • Will give it a go! Thanks so much.

  • NOT TAKING ANY MEDS FOR THE PD. WHAT DO U TAKE SUPPLEMENTS. WOULD BE INTERESTED TO KNOW HOW YOU MANAGE THE PD. THANKS

  • They may seem a little goofy but do them,,,it is like having water in your ears but it is crystals on your eardrum making you off balance....so they told me....

  • hi

    i was diagnosed woiht Psp i n dec2010 and used to regularly get LABYRINTHITIS An inner ear infection and took med for it

    i think it was brought on by usgn the swikmmign pool as i can n longer swim and hav e haD no attacks since

    i cannot tkae any meds for the PSP so dont know if the balance and veretigo probs are cause by your meDs or onto

    but it does need treating -tjhe vertigo and feeling sick )being sick

    Lol JIll

  • I'm so grateful for all the advice. I've had very occasional vertigo (like five mins a day for a few days) every few years, for the past 30 years but this is something else and it's really 'final straw' territory. I think stress is definitely not helping - but neither is the valium I've been given! I'm seeing my GP again tomorrow and now !eel that I have some intelligent questions I can ask! Many, many thanks - this is a great community!

  • I've had some wicked attacks of vertigo. My neuro said he did not think it had anything to do with pd. In any event, I'm with you on the room spinning experiences. Very scary.

  • What do you mean 'the ENT dept won't touch me because they 'can't deal with' PD? Who says they can't? If you mean they won't put a request in writing to them (preferably by email) copy to the Trust Chief Exec, your MP etc etc

    I feel better for that.

    My mother had Meniere's for many years & had surgery for the tinitus. This seemed to work although it has only a 50:50 success rate. I can't see any reason why you shouldn't be able to.

    My sister suffers from Labyrinthitis. There seems to be no permanent cure. Each bout is treated separately & she can go for years between bouts. I don't know how it was diagnosed.

    As I'm in a bad mood your neuro & PD nurse should be shot. Fair enough they may not be directly invloved but at least they should be signposting you to an area of expertise where you might get help.

  • Thanks for this, honeycombe - You've brought hometo me how much my normally fighting spirit has been sapped by the combination of the room spinning and the ' can't do anything about it' attitude I'm encountering from the NHS. I won't actually shoot (!) my neuro and PD nurse but I will definitely tell (NOT ask!) them I want to see an ENT specialist pdq. Thanks again

  • Or ask your GP to refer u to ENT

    Lol Jill

  • What a sensible idea. Why on earth didn't I do this???? I'm not normally as daft as a brush but I've been behaving like one - my feeble excuse is because I've been unable to think straight. The vertigo had brought me so low this morning when I saw my GP, that I was in tears, so she'swritten to ask the neuro to recommend an anti depressant and has given me a depression scale to fill in to assess my 'risk of self harm'. Thinking about it rationally now I can see that's the wrong approach - and the right one is down the ENT route. I'm afraid all this is confirming my long held theory that, wonderful though our NHS can be, if you're not in a fit state to keep on top of what's happening to you, then things can go pear-shaped very quickly. They all mean well - it's just that we don't teach people to do joined up thinking any more. so sad, and probably very costly in the long term too.

  • honeycombe , you have my sympathy too. Why can't one find a group of health professionals who deal with the whole person? I have issues with GI, knees and PD and the specialists are all pointing at the other. Here in NYC they will see me but no answers. :P Good luck to you.

  • I'm joining the conversation too; just experienced my first episode of spinning. I had trouble getting out of bed-- kept falling back and felt dizzy. Seemed to subside when I got up, but when I went to get the mail and looked into the mailbox, the street started spinning. Went to the ER, where they diagnosed vertigo and asked me to follow up with neuro and pcp. I'll keep posted.

  • I also have PD for 9 years, and started vertigo in the past 3 months. Yesterday ended up in the emergence room with non-stop dry heaves. I haven't found anything that helps but drinking a lot of water. I know what you mean, the doctors just look at you with deer in the headlights when they know you have PD. I guess I just wonted you to know you arn't the only one, sorry it's new to me too.

  • Yes I have developed vertigo and have PD. My neurologist says both can be treated effectively.

    What are you taking for PD?

    Jim

  • I see this is 3 years old but I have only just joined. I have fairly advanced PD and live alone. A couple of years ago I developed full blown Menieres and several times had to call an ambulance. Along with the violent vertigo came vomitting, bowel problem and streaming nose leading to near collapse. I took betahystine which helped a little and was not a problem with the levadopa. But the thing that did help was getting on to a low sodium diet. I had to check every processed food to be sure it had a sodium content of less than 120mg per 100 gms. This severely restricted my diet. Fortunately I found a baker who makes no added salt bread. Some time after the Menieres had settled, which took several months, I slacked on the diet and the attacks returned for a few days. This has happened a couple of times but as long as I stick to the diet things are fine. Also, I recently had a couple of mild attacks while suffering from flu related fever but this resolved as soon as the fever did. Hope this helps someone.

  • Although the original post is 4 years old it describes perfectly my situation with severe vertigo and Parkinsons. I've been to ENT's, Otologists, Neurologists, and Allergists. No one seems to be able to connect the dots. Through the last 5 years or so I've learned that keeping salt intake minimal and use of a sauna, keeping well to overly hydrated, regular sleep habits, physical and head movement exercises, medications for Parkinsons and allergies, and maintaining routine habits to keep stress down, all help but do not guarantee against a sudden onset of totally debilitating vertigo. It is a serious situation which has occurred while at work, driving, and while laying down to sleep, or waking up at night with it. If anyone knows of a medical group that deals with this please post the information. A complicating condition is that I have hearing in only one ear which has Meniere's symtoms (seems to be a catch all for I don't know). There does seem to be a relationship with "muffled" hearing which is more common during pollen season and vertigo, hence the efforts of an allergists. This seriously limits one's scope of activities, and is no fun to endure to say the least.

  • Hello

    I wrote the original post and looking back I'm shocked how bad I was.

    I wish I could say the vertigo has gone completely but at least it is no longer constant and I've learned how to deal with it

    The best thing I did was to research all the ENT consultants within travelling distance and made a private appt with the one who seemed the best. It was SO worth it. At last I found somseone who really knew what he was doing and was able to explain everything to me and take the time to find out what was going on. He lisitened, asked loads of questions and had the time to be really interested in me, rather than just ticking off a list of symptoms and ignoring those that didnt' fit the one size fits all diagnosis Contrary to what I'd been told for years by the local hospital I didn;t have Meniere's . I have significant hearing loss and tinnitus in both ears but Meniere's is apparently more likely to be unilateral. I had to do a test that involved marching on the spot which proved it wasn't Meniere's . I did however have one of the worst cases of bilateral vertigo he'd seen which meant it was difficult to use the Epley manoeuvre as I didn't have a good side.

    He explained using diagrams (which sadly I've lost) that the vertigo was extremely likely to be an effect of the damage in my brain caused by Parkinsons and that therefore getting the PD medication optimised would benefit me. He also prescribed betahistine 3x day. I didn't find diet changes helped though I have never used much salt. I'm not very good at keeping up my fluid intake and I know getting dehydrated makes everything worse. I don't drink tea and if I drink coffee my brain feels as though there's a whisk in it.

    The thing that helped most was NEVER sleeping on my left side and having a ridiculous amount of pillows so that I sleep at an angle of at least 40 degrees. If I liie flat or turn to my left when on my back the room still swoops violently. I've learned not to panic if it does and just close my eyes and wait for it to go. (I'm fine on my front). It's very tedious having to sleep permanently on one side and it makes it much more difficult to sleep being at such a steep angle - but it's worth it. From the experience of many sleepless nights I would recommend VERY strongly that you buy the best and biggest pillows you can afford, support you shoulders as well as you head but make sure tht you don't support your shoulders so well that your head tips back - fatal. Get out of bed very slowly (not a problem with PD!!) -many sudden head movement can set it off. I am now heavily me dcated for PD - at least 100mg of madopar and entacapone every 3 hours with azilect, neupro patch, and amantadine and have severe off periods but they don't seem to be associated with vertigo. Sadly I've learned that alcohol isn't really a good idea.

    One more thing - the ENT consultant I saw suggested that I should have another MRI because there is a type of benign tumour which occurs on the nerve leading to the ear which can cause vertigo. I decided to wait and see if it started to get less severe before agreeing and as it did I avoided the MRI.

    Oh and one more thing - be ultra careful with dentists! I had an appalling experience with a young dentist who, unlike my usual one. paid no attention to my request not to be tipped too far back - laid me almost flat and then started yanking and tugging trying to get a tooth out. He also didn't use the adrenaline free local anaesthetic that should be used with the drug combination I take. He then when into a total panic at the effect it all had on me and I had to spend an hour propped up in his waiting room before I could walk to the car.

    I'[ve rambled on.....! But please do PM me if I you'd like to chat. I know howterrible vertigo can be and am more than happy to help.

  • I am a new member and I cannot tell you how interested I am to find your post. It was most informative. I first started having vertigo attacks about 18 years ago. At the time I had a good job and my employer paid for several consultations with ENT specialists. I was eventually diagnosed with Menieres and put on stemetill and at different times other medications that gave me complete brain fog so I stopped taking them. Infact none of the medicines stopped the attacks which changed in nature over the years. It started more like being seasick with loss of balance nausea and sickness. Later the spinning got more severe with no warning whatsoever. One minute normal and the next seemingly spinning very fast whilst everything around me did the same. As they did not have any effect I stopped taking the Meniere's meds. On being diagnosed with PD I was discomforted to be told that some meds for Menieres can cause PD like symptoms, but I was assured that those symptoms stopped when the meds were discontinued. I have tinnitus and deafness in one ear. I thought I was over the Meniere's when I was diagnosed with Parkinson's approx 6 years later. After suffering PD for 10 yrs I suddenly started to suffer sudden severe spinning and falling attacks again and without warning. I have wondered for some time wether the vertigo was connected to the PD. I remember that before PD symptoms started I experienced many strange tingling sensations in the head.

    Now medically retired because of Parkinson's I no longer have access to private consultations. I attend movement disorder clinic and take a cocktail of Mirapexin, Azilect and Stalevo 75mg x 4 daily and I resist having the doses increased prematurely. I push my self to exercise but it is hard because I suffer a lot of pain in my left hip, knee and ankle and am also experiencing periods of "wriggling" when seated, which I cannot control.

    Perhaps it is time to insist on a referral to and ENT specialist again. My GP said there is no point because Meniere's is incurable and the meds are contra indicated with PD meds.

  • Just one more thought - reading all these posts it's SO obvious that vertigo can be, and often is, one of the many and varied effects of PD - so why on earth do so many neurologists and specialist nurses just bat it away, as mine did, saying it's 'not one of the symptoms of PD' so they're not interested? OF COURSE it is!!! Once you start knocking out the dopaminergic system in the basal ganglia the brain is really screwed up and almost anything can happen especially, as we all know, in the movement/falling over department.. It seems bonkers to me that the neurologists I've seen will readily accept that PD can cause me to sing in fluent French and German while I'm asleep (whilst struggling to remember more than a few words from O level when awake) but refuse to consider the possibility that vertigo can have any connection with PD. Why did it take an ENT specialist to understand what was going on in my brain?? It does rather make one want to bang their heads together!

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