have been on betahistine 24 mg for ab... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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have been on betahistine 24 mg for about a month and noticed a little improvement for my dizziness.

packerfan profile image
12 Replies

do you think a higher dose should be taken or the current dose taken more than twice a day.

I am really having a difficult time with this damn dizziness

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packerfan
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12 Replies
daisyd profile image
daisyd

Dizziness awful, I suffered from it for years, I am on betahistine which really helps me, I take 16 mgs x2 a day and can take it x3 if I need too.

I came off it a couple of years ago and the dizziness returned.

I no longer suffer from it as I am now taking it again, but if your dizziness comes on in a short spell, difficult to explain but if I pinched my nose and blew as if to clear my ears after flying if I did it immediately it stopped the dizzy spell in its tracks before it became unbearable.

Hope this makes sense. I would discuss it with your Gp.

Hope you feel better soon

packerfan profile image
packerfan in reply to daisyd

had to beg to be put on this medicine think it should be three times a day will try nose pinching thanks

tiredmum profile image
tiredmum

Morning, I too suffer from dizziness, it comes and goes and I find it is worse when I am tired. Even on 16mg, 3 x per day I was still falling over and hurting myself quite frequently.

My rheumy has added in stemetil (procloperazine) it is helping, but makes me drowsy.

You should go back to your GP

packerfan profile image
packerfan in reply to tiredmum

had to beg to be placed on this medicine. do not believe doctors know much about aps or this medication. I am looking for a new aps doctor thanks for your help

tulip47 profile image
tulip47

Hi there, have been on betahistine 16mg for just over 1 month 3x per day, before this i was on 8mg which really did nothing, I am still having dizzy spells or Vertigo as mine is called. I have also been told that I am on the maximum dose.

I have had this bout for over 4months now and have just had hospital appointment come through for ENT department to find out what if anything is wrong. Appointment is for June.

I might also add that i have been hospitalized twice for Vertigo having had really bad falls, over last few years.

Will update on hospital if you have not received any other info by then, meanwhile i really do sympathise it stops you doing so much.

Hope this is of some help

Wishing you better

packerfan profile image
packerfan

I to fall fairly often but had to beg to be placed on betahistine, it has helped somewhat but fear it will get worse. looking for a new aps doctor. thanks for your help

Lure2 profile image
Lure2 in reply to packerfan

Hi, You write that you are looking for a new APS-doctor. That I think is a very good idea. My Vertigo and dizziness etc was miniclots and I have been quite without them since i started warfarin in 2011.

Hope you find that doctor which can be quite difficult. For me it had to do with the inner/middle-ear when the sticky blood is not well anticoagulated and the bloodchannels are so narrow in the head. (Perhaps i use wrong words but hope you understand.)

Fingers crossed for you to find a doctor that understands your problems.

Best wishes from Kerstin in Stockholm

packerfan profile image
packerfan

thanks for the reply and I understand the blood channels. trying to find a doctor that treats aps and understands the difficulty I am having. unable to function like before, looking for relief.

Lure2 profile image
Lure2

I do hope you will be lucky to find that doctor.

Best wishes from me again, Kerstin

Lure2 profile image
Lure2

Hi again,

I looked into my papers and my Vertigo. This professor talks about "vestibularis". When I had Vertigo I felt like the whole world was spinning to the left. I had to go down on the floor or hold on a tree for some minutes. Awful. I also saw double like "caleidoscope", had Auras and short strong pain in different parts of my head. I have seen that you have been on Fragmin already. I know Dave on this site has spoken of a doctor that helped him. I cannot recall his name at present. Dave had symptoms a bit like mine I thought.

I write this so you can compare your symptoms with mine. I am not a doctor as you have already noticed but I feel rather sure that it would be a profit if you get a really good doctor that can understand what to do and send you to a specialist-doctor if needed. I also have had high bloodpressure and now leftsided (I have low INR today and then it is more difficult to find the Words) diastolic dysfunction and tricuspid- and mitralvalve leaking.

But I feel rather well. The anticoagulation is really important to this illness. Also lower bloodpressure and stop further Pulmonell Hypertension (I Think and hope)

Hope I have been able to send some information that could help you in some way. Good Night from Stockholm

Kerstin

packerfan profile image
packerfan in reply to Lure2

everyone has been so understanding and helpful I will be seeing a new doctor Wednesday and can only hope he can help will let you know thanks again

MaryF profile image
MaryFAdministrator in reply to packerfan

I hope it goes well, please let us know how it goes. MaryF

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