Hi all, l have just been diagnosed with Ménières, my mother has it but her symptoms are different from mine, l just wanted to run a few things passed some of you on here to see what help and advice you could give me. It is my right ear that is effected it constantly feels blocked, my tinnitus is in both ears and is very loud, l get what l call cluster head aches on my right side, l stumble a lot as if l have tripped over my feet and l always fall to the right, l have terrible sickness and dizzy spells and can spend hours over the toilet, a lot of my attacks happen in the early morning about 3-4 when l suddenly wake up and it's like I'm laying on a trap door and someone suddenly opens it and I'm in free fall, this can last anything from 10 seconds to hours, but it's what happens after that is starting to get me down.
After the free fall l will manage to crawl to the bathroom and be sick then craw back to bed and just try and hold on, l feel cold, very very cold but also have sweats, l then get what l call the judders that can last for ages, then comes the panick and the anxiety, then comes the fatigue and l manage to fall asleep, and l can sleep for days. This is a scaled down version, the last attack lasted 3 days with 2 days to recover. When they did my balance test the right ear was 49% deficient, and it did seem that my right eye, right ear and brain were not talking to each other. After a very nasty physical attack in 1993 l do suffer from PTSD so l can see how some of the Ménières is feeding into that and sparking it off, ie the panick and anxiety attacks as my brain and body don't know what is going on, l was just wondering if any one out there goes through any or all of these or can give me any advice as just how you cope, l am on Betahistine 16 mg 3 times a day, Fluticasone nasal spray (constant smell of smoke) and have now been put on Topiramate as they think migraines might be starting off the attacks. Well that's it, if you have got this far thank you so much for reading this, and any help advice or what ever you can suggest would be great fully taken on board.
Yours very great fully
Justin
Hi Justin. What a terrible time you are having just now! I am on the same dose of betahistine as you and so far this has helped control the vertigo. I was only diagnosed in July but had symptoms from last December. I was very unstable for the first 6 months and my vertigo attacks could last for a whole day with continuous vomiting. I assume you have cut down on salt and caffeine and absolutely no alcohol? I personally don’t use much salt or caffeine and haven’t found cutting these out completely any help but you have to find out what helps and we’re all different. I have heard of many people on this site who take much larger doses of betahistine in order to stabilise and tomorrow I have an appointment with an ent who specialises in Meniere’s and other vestibular disorders. Have you been seen by a specialist? I haven’t had a vertigo attack since being on betahistine but I have started having fluctuating hearing and lots of ear pressure hence the appointment tomorrow. I currently have what sounds like a jet engine in my head which is distracting to say the least. Maybe you need further assessment by a Meniere’s specialist? It’s a very isolating disorder and with your other issues it’s not surprising you are finding it difficult to cope. I do hope you are able to get more help.
Holy Moley, my friend you have gone through a lot!
I now use MQ Motion Sickness patches, one under the ear (affected one) and one on the belly button. Someone recommended this on this forum and I find they work very well for me.
I really hope you find something, pump the betahistine (it takes about 3 weeks to really kick in)
All the best,
Cliff
Hi Clifford, if you don’t mind me asking, I have been hearing a lot about these patches, are they available on the NHS? Am seeing the Gp tomorrow so may ask about it.
Hi Justin am so sorry you are going through that. I’ve been through it as everyone else on here, it’s not easy. What helped me on the bad days was to try and focus on the positive, speak to friends and family, they may not get it initially but they will, if you have to show then some of the history here and point to then that that’s how you feel regularly. Am on the same medication Betahistine, although I don’t have Ménières I have Vestibular migraines, but they share symptoms. Try looking at changing some things in your daily life and diet, that seems to help people here. (I removed chocolate, salt, don’t smoke or drink alcohol, pay attention to certain foods and diet drinks, watch your environment I.e: lights, stress, smells etc)
Welcome Justin
This forum will help you a lot. Unfortunately, not one of us are the same but very similar. Find a good doctor with experience in Menieres , follow a low salt diet. Allergies, Migraines and stress play a huge roll in this disease. Good luck to you
Will
Hello Justin, Thank you for sharing, very sad but interesting story, I too have migraines and I take topamax as a preventive and Sumatriptan for when they start, I never had any headaches prior to having meniere's disease, my neurologist states that there is a connection between the two illness's If you are not taking Sumatriptan, you might want to give a try. I know how devastating migraines can be. My issue started on the left side with meniere's, and over the years it has progressed to include the right ear, making my situation bilateral.
In the beginning I suffered violent vertigo and dizziness with all the fixins. The tinnitus is absolutely ridiculous.
The tinnitus is now in both ears, and my hearing is bad, no hearing in left ear, hearing loss in right ear. I wear hearing aids for communication. I can't offer you a lot of helpful ideas, but i will tell you that I do understand your situation completely. I'm sure you are probably controlling your salt intake at this point, I had tubes placed in both ears and that did help with the pressure in my ears. I would suggest that you might try balance therapy, it does help some people, not very effective on me though. But everybody is different. I wish you the best and its good to have you posting here with us. We are all stronger in numbers!
¯`v´¯
Thinking of you!
`*.¸.*´ and we all send prayers during this
¸.•´ ¸.•*¨¸.•*¨ difficult time, We are beside you!
(¸.•´(¸.• (¸.•´¸¸.•¨¯`•.¸¸.♥ Bertman
Justin: I see that you mention you have been prescribed Fluticasone nasal spray, do you find that this helps with the smell of smoke? I constantly have the smell of smoke as well. I am currently on Betahistine 24 mg twice a day. Thanks Karen
Justin. I feel for what you are going through. On top of the inner ear issues having PTSD sure doesent help. I was seen by a specialist here in Phoenix that only dealt with inner ear issues. One thing he was SPECIFIC ABOUT, is that virtually any medication, including the ones you are on, will have a negative affect on the tinnitus. I found this to be true. My issue was also the right ear. While no one can address tinnitus substantially other than watching your salt intake, the vestibular sectioning of the balance nerve did address the balance, drop attacks and nausea. I would make sure you have a good doc that specializes in this issue. Other than that do what you can to overcome any depression resulting from this issue. Just a post script. I also had the sweats, cold and other issues like you. I was actually carried out of my office soaking wet one day until my wife could get their and take me home. I would hate to see your condition worsen before you get some good advice from a specialist in the field, even if you have to hunt long and hard for one.
Regards
Richard H
Hi Justin:
So sorry to hear your challenges I had many of the same symptoms and after trying many things, I have gotten my menieres and vertigo under control. Let me tell you what I do and perhaps this will help you. While things did not improve until I started taking the betahistine, I do believe the combination of all of these steps helps. I will put them in order as to what I think is most important in helping resolve my episodes, at least for the time being. Fingers crossed it does not come back.
Exercising at least 4-5 days per week for 45 mins do both Cardio and strength training
Eating a healthy and nutritional LOW SALTdiet
Maintaining a healthy weight for your body size
Betahistine (28g - 1 time per day)
Diuretic daily (Triamterene-HCTZ)
Eliminated caffeine
limited alcohol intake.
Zoloft - this helps with my anxiety that I think was a trigger (150 Mg per day)
Meditating (10 minutes per day or when I begin to get stressed)
I am a 59-year-old male, 6 ft tall and 200lbs, I work in a high stress senior executive role. I know different things work for different people, but this combination seems to be working for me. Good luck.
Yes Karen it has helped me no end, l used to work as a memorial mason and would be out in the country side all day so l never new if someone had a bonfire or not, and was too embarrassed to ask my work mates if they could smell smoke, it was only when l was out with my wife and l would say "can you smell smoke??" 99.99% of the time she would say no, sometimes it was so strong it would take your breath away!! But now l only get it occasionally, l hope you can get some and it works for you.
Regsrds
Justin
Hi Justin, I am sorry you are suffering so much. I was diagnosed with Menieres in late 2016 but likely had it for years the Dr. said. I was on 24 mg Betahistine twice a day for a few years but was still having vertigo attacks. I am currently taking 48 mg twice a day, so double the previous dose. Since the new dosage, I have not had an attack. Betahistine is safe in high dosages. It took almost a month to get used to the higher dose but I feel much better. I still have to deal with the tinnitus, ear pain and pressure at times. Betahistine does not eliminate all symptoms but it improved quality of life for me by controlling the dreaded vertigo. Diet and exercise help a lot too. I love red wine but have to really watch it with that! In extreme moderation! I am under the care of a top ENT (Neurotologist) who specializes in Menieres. Speak to your ENT about everything that you are experiencing and keep a diary of your symptoms. Wishing you much relief soon! Stay hopeful!
HI Louise:
Would you mind sharing the name of your ENT and where he/she is located? Thank you.
Hey Yolanda, I do not know; I live in South Africa. You can buy them on Amazon (fairly inexpensive) and they will deliver within 2 days. The correct name is MQ - Anti Nausea Relief patch 100% herbal.
There are 30 patches in a box.
Does nothing for tinnitus, but helps a lot with balance, dizziness and life style. It is really amazing if you get nausea associated with an attack or your brain playing tricks on you.
Cheers and go well
C
Hi Greg,
I prefer not to give names, but the ENT is located in Toronto.
No problem, I understand.
Thank you for your reply, l am not a big salt or caffeine person, l do like a drink now and then but am changing my whole lifestyle to accommodate this, it's just a shame my bosses ain't as sympathetic, lol.
regards
Justin
Have not heard of the patches so will have to look into this, still very new to me, cheers Clifford.
regards
Justin
Thanks mate, have not heard of the patches before, as l said this is new to me will look into it.
Regards
Justin.