Just been diagnosed with MD - what do other people do to help their symptoms???
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Hi there,
Im 24 years old and was diagnosed with MD start of this month after having 3 bad virtigo attacks, all ending up with me in hospital injected with strong meds and put on a IV drip, vomiting 6 - 9 times, ringing ears, cant walk etc etc.
Does anyone have any ideas what to try to stop the ringing, fullness in ears, tinnitus, headaches and virtigo???
So far im taking gingko, vit b5 and b6, doing acupunture, starting yoga today and also chiropractor booked for next week....
i dont know anyone else with MD and found my EnT not so helpful so would love to hear other peoples stories, ideas etc who suffer with the awful MD! Just feel a little alone at the moment... and found this website which is looking very helpful.
Im over feeling like rubbish every single day!!!! The headaches, virtigo, ringing in the ear, blocked ear and have also lost half the hearing in the left ear.
thank you
0 likes, 17 replies
donna16710 Tay333
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eleftherio33095 Tay333
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Eleftherios S. Papathanasiou, PhD, FEAN
Clinical Neurophysiologist
Fellow of the European Academy of Neurology
donna16710 eleftherio33095
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rajikp Tay333
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donna16710 rajikp
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rajikp donna16710
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lana56327 Tay333
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You have all of our sympathy with your symptoms. I take a diuretic (triamterene HTZ) which stopped the vertigo for 6 years. When it came back, though not as severe, I had the intratympanic shots of a steroid. That helped a lot. All along, I had cut down on sodium, which makes it tough to eat out! Read all labels and try to keep the sodium under 15% in the stuff you buy. I have never gotten rid of the ear stuffed feeling, though it is worse before an attack. The tinnitus is also hard to control too, though a hearing aid helps me a lot. I'm sorry that your ENT wasn't helpful. I think that is more common than it should be. Some people find seasick medications (OTC) help during an attack and reduce the vomiting but it didn't work for me. Diazapam at low dosage did help if I took it as soon as I felt an attack coming on. Go online and look for books on Meniere's. Some of them have good ideas to help you cope. Good luck!!
maryduff Tay333
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jacki999 Tay333
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I don't drink, or smoke or drink caffeine
I'm not over weight and go to the gym 3/4 times a week
My blood pressure is good - I take no other meds.
I am taking betahistamine tablets - started taking 16mg X 3 times a day, after a few months increased to 2 tablets X 3 times a day.
Didn't make any difference - nearly lost my job as a nurse as could function at work.
4 days ago I started taking 3 tablets 3 times a day. It's early days - but fingers crossed - I'm symptom free.
My ENT consultant / GP have been pretty useless - I've researched MD and it seems to effect different people and drug therapy is different for everyone. You simply have to fight yr corner - trial and error seems to b the key X good luck
Tay333 jacki999
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I dont drink, smoke, drink caffeine and dont add salt to any of my food anymore either.
Blood pressure is also good and i go to the gym 4 times a week.
My ENT prescribe me betahistamine 16mg 1 3x a day but being so young i really wanted to try the natural approch with things so havent been taking them. I think i will start taking them today, the ENT did say they dont work straight away. So are you taking your 16mg 3 3x day?
So happy for you that you are symptom free for 4 days now! i cant wait for the morning i wake up and dont feel rubbish! Have you got tinnitus? Do you use a hearing aid??
Everyone does seem to try different things different things work for different people but i just like to hear what other people have to say about it as like you both my ENT and GP were pretty non helpful and its nice to talk to other people who know what your going through!! x
jacki999 Tay333
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Yes to tinnitus and yes to a hearing aid in my right ear.
if this doesn't work, the next option is surgery for a shunt or having the balance nerve killed off - which means permanent deafness - not an option for me!
Good luck - it is pretty much hIt and miss with finding an effective treatment. I managed to get some drugs from France that work a treat - but are not licensed in the UK
NeddyO Tay333
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If available in your country ask to be put on Betahistine (Serc) - from the sound of your symptoms very high doses may be necessary. The leading researcher on this is Prof Michael Strupp in Munich and the drug was developed specifically for Menieres. Apart from a bit of gastric irritation I suffered no side effects from the moderately high dose I was prescribed. I have been symptom free for 20 months apart from residual tinnitus (reduced) and left ear hearing damage, and for most of that time have been off medication!
Good luck.
donna1956 Tay333
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It's made by rugby and it's a antiemetic.
terry48784 Tay333
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Hi, Find another ENT if not helpful. You need one who has dealt with MD before and is sensible. I found a good one who unfortunately retired at the end of last year. Problem with getting people with experience. He did diagnose me as probable MD on my first visit, then definitely MD on my second one a month later. My last vertigo attacks came in the evening april 2015 and lasted 3-5 hrs even with buccastem medication. The next two days i was still dizzy, following day I could walk around carefully and day after that i felt I could start to do normal things again. If you are not in USA you can try betahistine as I found this has worked for me. I am on 48mg x 3 times per day. Increased dosage by 16mg(1 pill) per week until vertigo episodes stopped. My ENT said i could have gone to 64mg x 3 times per day. I also reduced my salt intake to under 1000mg per day but have recently increased this again as not practical eg no takeaways, no nice meals at restaurants and having a separate diet to my 15, 16 year old boys and my wife. So we don't use salt in cooking and go for low salt options where possible and I am less stressed. Needless to say alcohol does not go well with MD. Something that can alter your balance is not a good thing when yor are trying to avoid this. i was lucky as gave up alcohol 10 yrs ago. I have got used to tinnitus and aural fullness although sometimes I feel I am in a separate universe to those around me. Sometimes this is good as I feel I can take five and remove myself from whatever is happening. The hearing loss in my right ear is a pain and I have told people at work to approach from my left as when people call me I always look for them on my left. Oh and I started running as read that could help. It certainly helps my mood as I feel free, more like I was before MD and it is about as opposite as you could get to how you feel when you have vertigo. The irony of my situation is a year after being diagnosed with MD and being scared out of my wits, spending long days and nights in bed unable to read anything or watch computers or tv and having to hold walls to move around the house while carrying a bucket in case I throw up I am probably healthier at 50 than I have been for years. Last October I watched the final of the Rugby World Cup at about 5am in Auckland, NZ which the All Blacks won. Then my 16yr old son and I drove to the city and ran the 12km traverse over the Auckland Harbour bridge with lots of other marathon, half marathon and 12 km runners. It was a fantastic day and one I probably would not have had without MD.
donna1956 terry48784
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I use meclizine hci 25 and I take it as needed. If I feel an episode coming I just chew a pill and it relieves the symptoms usually within 30 minutes or less. It's over the counter but ask your pharmacist to order the chewables for you. You get 100 CT bottle for 5-6 dollars and it's made by rugby. It comes in a white and orange and brown bottle. Let me know if you have any other questions. My name is Donna59
terry48784 donna1956
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I tried Meclizine early on and didn't seem any different to Buccastem. They both maybe helped with nausea but didn't seem to help with vertigo.