Interesting reading

hi all, its been a while,ive been poorly alot since my last post, but good news I don't have menieres disease. Unfortunately my dizzinessand sickness continues,I recognised a time pattern to my episodes, they were twice in three weeks but recently ive suffered for about three weeks, leaving me fairly weak, I'm having thes basicaly on a daily basis. Thankfully my gp is supportive and refered me to nurology. Reading this site tonight I think this could be part of my aps, I'm hopeful that an answer will be found so that I can function as a normal human being again soon.

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  • I would ask your GP if you could try Betahistine I take 16mgs twice a day three if it's bad but has been really good for years now, when I come off them I have to crawl to the toilet as so dizzy.

    It is for menieres but it works for me and I don't have it, as far as I know there are not any side effects and is ok to take with Warfarin

  • I believe one of Prof Hughes blogs mentions Menieres Disease so unfortunately it seems it can be one of the symptoms of APS with some people.

  • I have APS and Lupus and suffer from dizziness too. I was put on betahistine 16mg 3 times a day and it helps so much. It doesn't stop the dizziness totally but it certainly makes life a lot more bearable.

    Ask your gp or consultant for it.

  • I wonder if you have now been to the APS-Specialist you said you had found and if he has put you on anticoagulation that works well?

    As Dave said earlier we must be on a higher INR than other people when having this illness, like an INR between 3,5 - 4.0. So many symtoms has to do with our very thick blood.

    Best wishes from Kerstin in Stockhom

  • Many of the people on this forum have had similar symptoms. I do hope it is investigated thoroughly for you. MaryF

  • Hi dawnzy

    I have had these kind of issues and I went back to see Prof Hughes. He switched me from Warfarin to Fragmin and also suggested that I saw his colleague Peter Savundra at The Portland Hospital in London. Peter is a great guy and he is one of the very few Consultant Audiovestibular Physicians in this country. He is very familiar with APS and explained in great detail why we get these issues with APS. It is because the blood vessels in the ear are only 0.1mm in diameter, which is smaller than some platelets. In APS our sludgy blood has difficulty getting through these tiny blood vessels and we have momentary ischaemia of the inner ear, which gives us the symptoms. Please go and see him if you can.

    Dave

  • thanks everyone, aapt with APS specialist is very soon 9th Dec, I also got my neurology appt early January so hopefully ill get it resolved asap,its intesting to read Dave,s explanation of this

  • Hello dawnzy. After my MRI to rule out vestibular nerve pressure causing hearing loss and vertigo, I went to a chiropractor who was able to successfully treat me for the vertigo. Wow the very first appointent helped me a lot. I continued to see him for about 6 months. The problem was caused by a nerve pressing on the left side of my neck by the bones and the damage done to my rotator cuff, bicept, and tendon. Partial tears from walking the dogs at the animal shelter. Maybe a chiropractor would help you some. Good luck.

  • Hi snorkle272,

    You should have gone to a Doctor that Dave suggests, an Audiovestibular Physicians and not to a Chiropractor!

    I have been to a Professor of balance/ear issues (like the one Dave talks about no doubt) here at Karolinska Hospital in Stockholm. The best we have in Sweden. The Vertigo and ear-issues are caused by micro-embolies and is a symptom of our illness APS. We need to thin our blood!

    After anticoagulation with Warfarin at a stable and rather high INR I have today no symptoms from Vertigo only some Tinnitus but so used to it. Today I also wear hearing-aids to hear 100 %. .

    Call that APS-Specialist and I think you will feel much better!

    Kerstin

  • We don't have audiovestibular drs. here in ontario. As it was it took me 8 months just to get into to see the ear, nose and throat specialist. I am still looking for an APS specialist. Thank you for your help.

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