Hi everyone, My mum (58) has been recently diagnosed by her ENT with meniere’s after a long time suffering. About 5 years ago she had a bad period of regular vertigo attacks which have come back in the past few months. She also has permanent hearing loss & constant tinnitus. She has started on betahistine 16mg three times a day - she is on it just over three weeks and has had no relief, if anything the attacks have gotten worse. She gets an extreme vertigo spell every 2-3 days. Yesterday she had her first ‘drop attack’ where she got immediately dizzy and fell without warning. She fell down the stairs and hit her head which was obviously very traumatizing and upsetting. She is living in constant fear and has no confidence to do anything independently. She takes multiple supplements and vitamins, does regular stretching and is very healthy other than with these vertigo attacks. Has anyone had this experience with betahistine? I know it can take a few weeks for the medication to work - but is it a case of getting worse before it gets better? I see others have had relief taking higher doses, we’re Irish and here the maximum licensed dose is 16mg three times a day and doctors generally don’t prescribe anything outside of the licensing. I haven’t found many posts on the use of diuretics and if people found them effective? I saw on one post someone mentioned their GP said they could only be on betahistine or a diuretic … I don’t know of any interaction between the two & am curious to know why that would be the case? Has anyone experience taking the two of them together? Any help / suggestions would be greatly appreciated. I’m trying my best to look into all the different treatment options and would be open to any suggestions that might help her. Thanks everyone, A concerned and worried daughter!
Has she tried the John of Ohio regiment? I too suffered for years before trying it. It worked amazingly for me. No attacks for over a year now. Good luck to you and your mom. It’s an awful disease
Here is the link to JOH regiment: https://menieres.org/forums/attachments/a-successful-new-approach-to-menieres-disease-pdf.169/ This is just a spreadsheet I made to help keep track of all the supplements: JOH (John of Ohio) Regimen for Meniere's Disease details
I have usually found that the ear fullness causes gait instability, but the profound and sudden vertigo attacks seem to be linked to a misalignment between my Atlas and C-1 in my upper neck. I frequently fall out of cervical alignment due to an irregular gait from an old ankle fusion. The only chiropractor who has ever helped me, uses the Palmer Method with a nerve scanner to identify the exact location of the misalignment, and a drop headpiece on his adjustment table to minimize unwanted force to the neck. I always feel better (clearer brain, less liable to dizziness) about a day after an adjustment. And I go to a physical therapist to help realign the neck muscles through strength training to reduce the pull that makes me continually go out of adjustment. The chiropractor is in Ventura, CA, and his name is Dr. Jed Smith.
Very sorry for your Mum. The dose I get ist three times/d 48mg. 16 mg and 24 mg did not work. I also get 37.5 mg of Amitriptylin in the evening, which is off label use against my severe back and neck pain. Amitriptylin is an antidepressivum, can't bei wrong with MD. Best wishes Lilja
Hallo hopeandready, the dose of betahistin is too low for you mother. Check hier Häufigste Diagnosen | Deutsches Schwindel- und Gleichgewichtszentrum Here are the instructions for treatment in a vertigo center Munich, Germany. it is recommended at least 24x3 times per day pro More. Good luck to your mum.
I will echo what Colette said about JOH regime. I was having several attacks a week and started the regime last April. I had one attack within about the first month when I started, but since then I have had zero attacks and feel basically normal. I still have occasional tinnitus, but it is much less often and less severe. I do watch my salt intake, because that was a definite trigger for my attacks. I am also taking a diuretic which I started at the same time as JOH. I personally feel JOH is doing more but will continue to do both until I feel safe to taper off one thing at a time. I feel sorry for your mum... I know what she is going thru. Good luck.
The only thing that has worked for me is time. I decided long ago to quit trying everything. So far so good. After the drop attacks subsided a year or so ago, I seem to be in remission from vertigo (at the moment). Jim