hi all! After dealing with very similar symptoms described here and feeling really down about it I decided to look into it more and stumbled on this forum. So my first incident with vertigo happened years ago after a few days in bed it disappeared leaving me with loss of balance, didn't think much of so just carried on. Second time it happened I was actually abroad and spent 3 days in bed with everything around me spinning and that was January 2016. Once again it went away and I just ignored it. By November of same year while shopping I felt like I was going to collapse, it just came so fast that I had to ask for help and call an ambulance. At A&E the doctor said one of my ears was blocked so was prescribed olive oil and told to see GP about a blood test. After 4 weeks (this long because could not for the life of me get an appointment) my GP told me I had high cholesterol and that my symptoms ( lightheadeness, vertigo, dizziness and tinnitus) was all part of it. Prior to seeing the GP I ended up in middle of night at A&E again because of same symptoms. The doctor there prescribed me some Procholperazine which helped. My GP at no time investigated my symptoms further even though because I was struggling I had to see about 3 other GPs before him, because of that I ended changing GP surgeries. My new GP-although not immediately focused on Menieres- decided to investigate further and after me going back several times with similar complaints then prescribed me Betahistine. I have been taking Betahistine for the past 6 months or so but recently noticed that the lightheadness and dizziness was coming back and that leaves me really down and majority of time I feel really negative. Reading all your experiences just made me feel not so alone, maybe next time I see my GP I'll mention how depressed I have been feeling. Meanwhile I just carry on and try to deal with symptoms as they come, can't really afford to be off sick, but am constantly tired, even after resting. Thanks to anyone who reads this and/or reply.
Hi Yolanda. Since you have read comments in this forum I'm sure you have read that your next step should be to see an Ear/Nose/Throat (ENT) doctor. If you have not make this appointment, please consider doing so immediately. ENT will administer a hearing test and do an ear exam, etc to determine if your symptoms are Meniere's Disease or something else. When you request an ENT appointment make sure it is with one that specializes in inner ear diseases...not all ENT do so. Some specialize in sinus problems, or allergy problems, or are just general overall ENT. Get back to us following that exam and let us know what is diagnosis. If it is MD we can help you cope since all of us have that problem. Good luck to you....we care, so please stay in touch.
How long are your attacks for? And do you get ear symptoms with them? Do you get warnings before the attacks start?
Increasing the betahistije may help what dose are you on keep track of what works and what triggers it I'm on 8mg 2x day betahistije
Good luck
Hi Yolanda, I have had MD for two years and I am on 16mg Betahistine x 3 daily with 10mg Amitriptyline at bed time. I also take a paracetemol in the morning & at teatime, I find it smooths the edges . You do really need to see an ENT specialist as most GPs have no idea of MD. I also had an MRI scan in case it was a tumour and on my first visit I had an Epley manoeuvre performed to rule out BVVP. Last summer I had four steroid injections into my ear which have had a positive effect on my ear. Hope you find a doctor who takes you seriously .
Hi Yolanda I have had severe spinning for two days and now left with balance problems that have gone on for over a week this my third attack and the worst as the others have just been 24 severe spinning and sickness there have been two years between each of them .. My GP told me it was from an ear infection ..and would recurr but be less each time. But it has t been less each time There seems to be a lot of causes it could be a viral infection and it can take a long time for the balance to get back to normal . I have health insurance so aftery my second attack I went to an ent specialist . he said much the same as my GP he said he couldnt ru le out menieres and to come back if it returned and increased in severity. I'm.going back today .. I would advise joining a low cost insurance that covers things that have a long waiting list so you can be seen quicker.. When you go privately they tend to listen to you much more than the busy nhs doctors.they sent a full explanation by letter and one to my GP which she found very helpful do when I rang her she vpulf see bis advice on it and she referred me back .. Hope this helps .
Hi Tanney thanks for reply and advice, my GP specialises in Kidney issues and since kidney disease also presents with similar ish symptoms is having me do a 24 hour urine test. Unfortunately for me had to repeat it 3 times since the lab somehow manages to always loose my sample or say that they haven't received it, and because of that my GP will not give me a referral to hospital, because he is still waiting for results. But am tired of waiting, feel like am going back to 0, so I have an appointment next week and will request a referral asap.
The last one lasted about 3 days of extreme vertigo (could not move without feeling like death) I don't recall any ear symptoms, but when I was child did have a lot of issues with ear infections, but don't know whether that would be linked to this. Now while on medication the attacks are a lot milder but first symptom is always the nausea but more recently I have been experiencing the lightheadeness and dizziness more.
hi Bluesman am on 16mg Betahistine 3x a day. At first they worked brilliantly but now it seems like they stopped, one of the gps gave me some Procholperazine to take on top of that also 3x a day. Am just so tired all the time and I sleep well at night, but just feel drained.
hi Lizzie, am seeing GP on Monday so hopefully they will speed up my referral, because I just feel like it got better at first, but now am going back to the start except now I feel so down with it because it just took over my life and left all these negative thoughts.
Yolanda I felt like my life had ended at the start but it settled down & I just have to watch no sudden movements or throwing my head back. At first I couldn't put my head down to read a book. Always tired & fall asleep as a passenger in the car. Going to try and loose weight too. Hope you get your referral soon. 😀
hi Alice! I don't think I can afford a private health insurance. The only reason it's taking so long for me to be referred is my GP-who specialises in kidneys and thinks that is the reason for my symptoms- is waiting for the results on my 24 hour urine test. But the sample keeps disappearing or not being delivered or not being received ( had to repeat it 3x). So is taking longer than expected. But the longer it takes, my stress grows, my frustration grows and am getting depressed on top of all that. Am seeing GP on Monday because I no longer can wait. Either that or i'll end up going abroad for my tests and then just present it to GP.
Yeah weight is an issue for me too. Just was seriously not counting on feeling so down. It feels like my own body is attacking me and that just makes me feel so helpless 😩😔
I have had a strange episode last year when I went to get out of the passenger seat of the car, I got out but just stood there because I couldn't seem to move my feet. I managed to move when my husband took my arm, felt such an idiot, brain was not functioning..
Hi Yolanda
Firstly I want to just say how sorry I am that you are suffering and feel so alone with this. There are treatments out there and many people do find something that helps them. Also, from what I have read from people's comments and research, it does often seem to improve in time - the first attacks and the first months seem to be the worst.
You don't seem to be doing very well with your GP; is it possible to change to a different one? He seems locked in to this being a kidney problem and if the surgery keeps losing your sample you just are not getting any where with it. The wait to see an ENT can be a long while with the NHS now so you need to get into the system as soon as you can.
Wishing you the best of luck and better health.
Thanks Mistibluey! I have already changed Gp, my previous GP was a lot worse. It took me 4 weeks to be able to see him, and I rang every day for a week to get an appointment in the same week, but got nowhere all appointments were always the week after. Once I finally got to see him; it was like he was almost mumbling to himself about my blood test result, making notes whilst telling me to go on a diet, I could not get a word in. I 5 minutes he told me I had high cholesterol and high BP ( which at my age I shouldn't even have, but he never investigated it further)and prescribed the meds accordingly and sent me on my way. Only because I insisted that I was feeling dizzy too he prescribed the Procholperazine and the only reason why he didn't ignore me was because he saw that the doctor at A&E had given me some. Sorry for rant here, but if I hadn't changed GP I would be a lot worse.
Wow Lizzie that's so scary. I hope you're much better these days. Obviously my journey is just starting so am still hoping to get to that point where I no longer worry whether I'll make it to through the day.
Yolanda - I'm sorry you are having such a rough time of it at the moment, hopefully you will get referral to an ENT specialist soon. The NHS is under such pressure and I know it takes ages to see someone.
While you wait, have you tried some of the things that have helped other members of the thread? Most try to follow a "hydrops diet" and reduce their sodium intake - you can get more details about the diet online.
It seems to help many people to try to improve their general health in any way that they can, get gentle exercise, regular sleep patterns and to try to reduce stress as much as possible. There is a lot of good advice in this threads from people who really want to help others.
I hope things improve for you soon. Misti.
Hi all! So today I went to see the Gp to let her know how I have been feeling and to forget about the 24 hour urine test. She did agree that the test was only because of me having high BP and they wanted to find out what caused it. But today she did agree to send me for a hearing test (ok not a total victory but a step forward) if that comes clear or any other result and am still feeling sick then she'll refer me to ENT. So fingers crossed I get the appointment soon.
Yolanda, I'm in the US and am disabled with MD, it knocked me out of my nursing profession 16 yrs ago. We deal with very different health care systems and I note that many of the generic medication names differ. What does not differ is our shared difficulties in getting a diagnosis and the right treatment for Meniere's.
When it hit me, I was relentless in pursuing a diagnosis and it took me 11 months of ENTs, testing, meds, etc before I found Dr. Paparella - a world-renown specialist, surgical pioneer, author, and an exceedingly compassionate Doc; often my only bright spot in living with Meniere's.
Being an RN, I read your post and can only hope you can get the right ENT to do the correct tests and that the tests are repeated enough to get a dignosis. You may have simple BPPV, it could be a benign tumor called an acoustic neuroma, you may simply have labrinthitis / inflammation of the inner ear, or some other inner ear related cause (A 24 hour urine test? That is ridiculous imo).
I take a whole 'cocktail' of meds: Scopalimine patch, Valium/Diazepam 10 mg twice daily, Prochlorperazine for the nausea, a diuretic, and when I need more to control symptoms, I use Meclizine (the over-the counter med that is the non-drowsy Dramamine).
I feel for you and the road you may have ahead...
My Doc is second only to Harvard Medical in research here in the US; the research shows that all of the tests specific for MD will provide a false negative - or show normal vestibular function 52% of the time, even in MD patients with fully incapacitating symptoms. Dr. P. does hearing tests, Caloric testing (warm and cold air into each ear to bring on the eye movements/nystagmus), a few other tests as well, but mostly, he goes by the patient's answers to a very specific set of questions. He quickly diagnosed what other 'specialists' missed: full-blown, bilateral, intractable, vestibular MD.
After 16 years, 3 intra-cranial surgeries to control the vertigo, a boat load of meds, and much personal research. I have found a way to live with this awful disease. I hope you don't have it and can leave the episodes behind you with the treatment for BPPV.
Know that the nature of MD and the mental fatigue, stress, anxiety, illness, etc is all part of inner ear disorders and you will find a way to cope.
While you wait for the right GP, perhaps try to find your UK version of Meclizine and use that with any attacks; it will help a bit until you are prescribed the correct meds to control symptoms.
Wishing you all the best.