There is hope
Posted , 9 users are following.
hi I have had MD for over 2 years now. I had tinnitus first for 6 months before having my first attack. At first I thought up I had a bug which was making me sick for hours but after a few attacks after it I was sent to a ent specialist. He diagnosed it was MD. I was put on betahestimines 16mg 3 times a day. This helped slightly but it wasn't till I was asked to do a study in Scotland for the USA having 4 injections over a 1yr period. After first injection I had no vertigo or sickness. This proved I had not had the placebo. Every 3 months I would go back and get my next injection. After 3 red injection my tinnitus went. By the time I had my 4th injection it lasted 6 months before I began to feel unwell again. For the past 3 weeks I have had an episode nearly everyday. Thankfully my ent specialist phoned me to say I can go on the 3rd study for injections which I will have soon. I know they worked and can't wait to get them again so that I can get life back for at least 6 months. I have heard good reports on this injection. One guy had no life with MD and he was on same study as me and it made his life so much better. Hopefully this injection will be prescribed in 2017 once reports are in. I'll keep you updated when I get first injection. This is a terrible disease but I think there has been a breakthrough fingers crossed for you sufferers.
0 likes, 23 replies
dizzysand sarah66746
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sarah66746 dizzysand
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This is what I've taken from the study site,
To evaluate a new investigational medicine for Ménière’s Disease. The study involves a study drug called OTO-104, and aims to evaluate the safety of multiple doses of OTO-104 in reducing the disabling attacks of dizziness/vertigo. New investigational medicines require clinical trials to test their safety and effectiveness. Each person with unilateral Ménière’s (in one ear) who enrolls in this clinical research study moves us one step closer to the development of new future treatments for Ménière’s. Clinical research is the key to finding new ways to prevent, diagnose, and treat Ménière’s and other inner ear disorders.
There is a gel they put in it this is to keep it in the ear and release over a period of time. I had hearing checked then ear slightly numbed, an injection goes right into inner ear, although slightly sore, I would rather put up with seconds of pain to dizziness anytime.
dizzysand sarah66746
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sarah66746 dizzysand
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The USA started the study and Britain were to do the phase 2 of it. This is the 3rd stage in which I am lucky to be doing the 2nd and 3rd phase. All reports will be sent back to USA to see how well it worked. I know it worked on me. If you Google menieres study for this you will get lots of information on it. I have researched a lot on this topic. I'm now looking to find other people who have done study 2 and how they feel now after it.
tim63896 sarah66746
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sarah66746 tim63896
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tim63896 sarah66746
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Thanks for this info Sarah. Do you know if the trial medication is intended for regular use it if it is a course that a patient would only need one cycle of? Also, is it intended to treat hearing difficulty associated with Menieres. I suppose I'm asking, is it hoped that the treatment will cure this awful disease or manage it.
sarah66746 tim63896
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Hi, I would think this would be regular use, my Md came back 6 months after my last injection. The study was to see the amount injection given over the yr, I think some people had it 4 times a yr, 3 times a year or less. It definitely managed mine by having no symptoms of dizziness, sickness or fatigue which I all had. The tinnitus went after the 3rd injection. It came back 6 months after 4 th injection then 2 months after that the attacks came back. The guy I read about had it so severe, worse than me, he got better and mild attacks within 1 st injection and he got better and better as the yr went on. He called it the miricale cure. So that really is saying something that it helped him too. I had my life back last year, now I feel I'm back to anxiety, scared to go out and not being able to go out. This Monday coming I fill in forms to get study. Hopefully I will get injection within the next month. I will keep posts up how it goes for everyone.
pat99554 sarah66746
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sarah66746 pat99554
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Hi Pat, I'm on the betahestimines but not working for me. When I went on trial the specialist asked if I was still taking tablets. I said no because I wanted to see if the injection would work on its own. I am not sure if other people was still on the tablets while receiving the injection. I sincerely hope too the trial ends soon and that this drug works for everyone else that has MD. being able to go out without worrying and enjoying life. I noticed last year I was free from it. When I have attacks my kids know what happens and will leave me to sleep it off. Feel for the kids as they see what I'm going through, and it's very hard to plan anything.
Eliza.Bos sarah66746
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Thanks so much for sharing this and for participating in this valuable research! I have generally been able to manage my symptoms with lifestyle choices over the past couple years, but recently it seems like I'm having more attacks for unknown reasons. Do you think the "next level of treatment" (injections or anything beyond a "rescue medication"
comes when people begin to have more attacks for unknown reasons? I guess I'm just trying to figue out if I am currently doing enough to treat my symptoms/prevent attacks or if there is more I can do?
Eliza.Bos
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I also really empathized with your comments about feeling for your kids. I try so hard to act like I feel well sometimes, but it's hard. I don't want to let my health prevent us from going out and doing fun things, but sometimes it is a consideration. I'm hopeful that with advances you're talking about, we can get past this!
sarah66746 Eliza.Bos
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Hi your welcome. I didn't really change lifestyle as I suppose I was coming to terms with what I had. Before I knew it I signed up for the study as I was having frequent attacks. During the study I was still taking caffeine tea, smoking, living like as I did before a got md. I had no attacks in a yr and a half. I guess after that time the injection wore off and it came back.now I am looking at lifestyle, I am now going to cut out caffeine as a friend of mine spoke to a woman that cut this out and cured her md. I remember when I began to get symptoms like my ears were echoing and it was hard to hear people, I was learning Indian head message and to be honest that helped the tinnitus. As a complimentary therapist I've just read on this forum about reflexology helping. As I am a reflexologist I will try this, thankfully I have a few friends that do this too. I don't take a lot of salt or alcohol so I guess it will be giving up the smoking next. I don't know if it gets worse over the yrs or if that's us for life having this but the injections were a god send. There has been many thoughts ran through my head, do I have this due to another reason, like I wouldn't say I have really looked after my body is it time to do this to help with md. at this moment I'm just looking forward to the study again to get more info which I will no doubt get on Monday. I will keep everyone posted how it goes. Menieres study uk has info about the injections.
lana56327 sarah66746
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I am in the US and intra-tympanic injections of Dexmethasone, a steroid, are an accepted treatment for Meniere's. Your study may be testing a new version of this. I had the series of 4 injections about a year ago and my vertigo, which had recurred after none for 6 years, went away and has stayed away. It did not change the tinnitus or the hearing loss, but seemed to work on the vertigo attacks. As a side note, I also found that trifocal glasses caused me to feel very woozy, almost vertigo, for about 2 to 3 times a week. Started wearing contacts and the wooziness stopped. Have been on a diuretic and low salt diet for years. The injections did seem to work! I was told that if vertigo returned, I could have them again. Hopefully your trial will help fine-tune the injection material so that it lasts longer and works better!
sarah66746 lana56327
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Hi Ian I think it is, as it was a steroid I was on for the year. Mines has come back more frequently this past month, but thankfully looking forward to next injection. After an attack I feel so tired and sleep for hrs, I don't take that much salt in my diet and just changed to decaf tea. Hoping it makes a difference. I hope so too Ian had a normal life last year praying these injections are the answer to all sufferers.
Scnewhomes lana56327
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sarah66746 Scnewhomes
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