Betahistine effectiveness
Posted , 8 users are following.
hi all,
i had my betahistine dose increased to 32mg three times a day over 2 months ago and although i have improved to a certain extent i still cant live my life.
i am currently on week 9 of having no vertigo (i usually go 8-9 weeks inbetween) however i am spinning and my legs go very weak and im beginning to struggle at work again.
has anyone ever had a higher dose that 96mg a day? if so has that worked? or if not what was the next step for you?
i am relictant to have gentamicin or steroid injections as there are so many side effects and to be honest i cant afford to be out of work or housebound again!
many thanks in advance
0 likes, 11 replies
roxanne76357 sarah87228
Posted
The highest dose my Dr allowed was 24 mgs 3 times a day. I get steriod injections every 5 months or so in the ear.
I wouldn't go ant higher then the 32 if i were you. I have actually stopped taking the serc as my symptoms have settled but it took a long time.
sarah87228 roxanne76357
Posted
can i ask why you wouldnt go higher?
there are many mixed reviews but as a healthcare professional myself i have many reservations about the injections
tanney sarah87228
Posted
Hi Sara, sounds like the betahistine has been successful in eliminating vertigo....so you are probably at the right dose. The dizziness and unbalance you experience now probably indicates that you need vestibular rehab. You also might benefit from taking Ativan which is a sedative that among other things helps calm down your inner ear and reduce the dizziness you feel....it also tends to reduce tinnitus. You might want to discuss both the rehab and Ativan with your doctor. I personally have found that both have been very helpful to me. I have bilateral MD and I take 64mg total/day of betahistine. I also take 50mg of a diuretic and allergy nasal meds along with sinus flushing twice/day. A large percentage of MD is caused by allergy which must be managed to avoid dizziness episodes. Also make sure you are managing your diet....NO salt.
I've also had gentamicin injections in one ear....if you want more info on that let me know.
janice68460 sarah87228
Posted
I DECIDED MYSELF TO UP THE DOSE OF BETAHISTINE TO 32 mg three times a day and felt much better but my gp. told me that 16 mg three times a day is the highest dose so I'm back on that dosage.
I'm ok so far after a few days but wonder whether when the higher dosage wears off I'll be ill again!
catherine81401 janice68460
Posted
my consultant at hospital increased my dose not GP i can cope with what i call little wobbles but its the drop attacks i struggle with as they come on out of the blue and i get no worning signs iv fallen down the stairs that many times the council have now moved us into a bugerlow i cant work as i'm now classed as a danger to myself and other people
catherine81401 sarah87228
Posted
hi i too am on betahistine 32mg 3 times a day it hasn't helped me much with my simptoms everything spinning ( stop the world i wont to get off) my legs go wobbly i'm violently sick, i have had the steriod injections and they have give me so restbite from the really bad drop attacks because they really frighten me i dont go out on my own as i'v ad attacks on zebbra crossings and nearly been killed twice and fallen down escelators i would reconsider the steriod injections i haven't had any side affects from them
NeddyO sarah87228
Posted
Betahistine takes at least a month to become fully effective so don't despair - my experience may help.
My consultant, having confirmed the diagnosis, and noting that I was not fully controlled tripled my dose from 16mg to 48 mg three times daily, and told me if I remained attack free for 6 months I should then wean myself off. That strategy worked and I had a full remission period of 21 months.
His advice was also that if the warning signs of MD returning (Ear fullness, unstable tinnitus, dizzy spells) occurred to not wait for a full blown attack but go straight back on the high dose and increase it further if necessary. The reasoning for this is that each major attack is very likely to cause further hearing loss which is not reversible.
I got the warning signs again at the end of July 2016 so did as advised. The signs subsided over 2 or 3 days which was good but about 6 weeks later I had a sudden vertigo attack for a couple of minutes which left me feeling unsteady and unwell. I always carry buccastem and took one straight away – fortunately that worked OK. As a result I increased my dosage to 64mg tds and followed the same protocol as before. My consultant has patients on even higher doses!
I have been in full remission for over 2 years now.
Hope this helps.
sarah87228 NeddyO
Posted
wow, thank you so much for that. are you in the UK or US?
That is very encouraging to hear.
I'm seeing my consultant again on 23rd november so hopefully he will agree to an increase as the betahistine has saved me from losing my job so far.
sarah
catherine81401 NeddyO
Posted
i have been on Betahistine for over 6 yrs it was increased to 32mg just over yrs ago now but still not get getting much relief so that is why i was sent to see a further consultant who as given me the steriod injections and they have dramaticly improved the drop attacks as i was getting them on a daily basis i can cope with what i call the daily wobbles its the drop attacks the frighten me
NeddyO sarah87228
Posted
I am in the UK. GP's generally will not exceed the max limit in the BNF ( widely regarded as little better than placebo) without a consultant report so I hope yours is up to date. Prof Michael Strupp in Munich seems to be the leading researcher in this field!
NeddyO catherine81401
Posted
See my earlier post - high dose betahistine seems to be the key!