Sticky Blood-Hughes Syndrome Support

Major head pain and tinnetis

Major head pain and tinnetis

My best friend and I are going through H___ trying to figure this out for 120 days. My husband is an optometrist and saw her for nystagmus and thought it was a virus of the 8th cranial nerve! His suggestion was for her to go on an antiviral and steroids. Which she did but took steroid first then started antiviral her ringing was about 1/2 after the first day but had to stop taking because of causing headaches and sometimes nausea. So she stopped now 90 days later we find out possibly it could work to alleviate tinnitus and pain once virus has subsidded with the antiviral and steroids. Zoster Sine Herpete look it up herpes zoster. We are going to try again on Monday after she shows articles to her neurologists of this important find on Herpes Zoster! I will let you all know as soon if it worked! Good luck I really hope this helps many people with this horrifying illness! Carrie

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4 Replies

Hi Carrie,

This Forum is ONLY for those diagnosed with Hughes Syndrome/Antiphospholipidsyndrome as this is not a general medical Forum and we are not medical trained here.

Tinnitus can be one of the symptoms from this autoimmun illness, that is correct, but Tinnitus can have to do with so many things.

If you and your husband are medical trained I suggest you read about autoimmun illnesses and how it can interfere with all organs in our body.

Please come back when she has got a diagnose of HS/APS . There are very few Specialist who knows this illness or blood-disorder as it has to do with too thick blood that has to be properly and stable thinned.

Good Luck!

Best wishes from Kerstin in Stockholm


Your friend may or may not have APS/Hughes - tinnitus can relate to so many deseases, if your friend is seeing her neurologist then they are under a specialist. This forum is only for people with the desease, ask your friend to join when they have diagnoses.

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I agree with my colleagues.


As has been said this is a foam for people with Hughes Syndrome/APS. You do not say if either of you have it and therefore you could be on the wrong site.

Please confirm by PM to me. In the meantime Im turning off the ability to reply to this thread as there is no point in anyone replying further unless we know that you have the disease, and if you friend does she must join and ask her own question.

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