Yes, especially when I feel like I have a headache or really more like pressure inside my skull. Mostly I am bothered by sound and smells. Not so much light. Nancy
I can tell you that before Warfarin (before I was anticoagulated and only on Aspirin for my TIAs etc) I had difficult with these things especially bright light.
Even if I was not on top INR when I started Warfarin I could notice at once when I took the first tablets of Warfarin that I could see more clear and almost at once my doubleseeing disappeared and I could read again. For my memory etc I had to have a high INR. I am primary APS and triplepositive. When I read the book from Kay Thackray "Sticky Blood Explained" I noticed that she and I had many symptoms in common especially with eye-issues.
Hope you feel better now. We are here for you and understand yours problems.
Oh most definitely! I don't have an APS dx but I have tested positive for antibodies and (I feel) I have the symptoms. Going to discuss my constant headaches and light/sound sensitivity with my rheumy in two weeks. (Will also be tested again).
I know you have been diagnosed with Lupus and Sjögrens and you say you have also have positive antibodies for Hughes Syndrome/APS.
You also have hypothyroid and to me it sounds as if you really need the best Rheumatologist you could find who is specialized in Autoimmun illnesses as just these also go hand in hand very often and the Doctors can have difficulties to distingquish between them.
The antibodies can often also be negative for some time and then positive later on.
Hope you have done the bloodtests that Mary so often talk about. They are very important also. Good Luck in two weeks and hope your Rheumatologist is qualified enough to meet you!
Thanks Kerstin! Here in the US it is difficult to get the official DX if you haven't had an "event" such as DVT, TIA, etc. Ridiculous yes!
I recently had surgery and my surgeon was concerned so I had a heparin shot prior. I can tell you that I felt great so to me, that is another indication that I could get some relief from medications otger than aspirin.
Hoping for a good discussion on this at my next appt. I may just request to see the head of rheumatology !
I suggest you print off from the question 2 days ago from Danny-Boy "APS target according to Dr Hughes" and the answer yesterday fro.m Hughes Comrade - aps-support.uk/resource..
and take it to your Rheumatology and show him what they say in England.
It's so insne. It's like a car barreling down the highway with a visible leaking gas tank but refusing to fix it until the car stops due to lack of gasoline!
yes. noise, light, and especially smell. indeed. Besides check-up by GP I can also advise The Gupta Programme (to help you feel less anxious about it all). This has helped me a lot.
You aren't alone in sensitivity to loud noise and light. I'm the same. Driving down the street with sunglasses on when it's sunny and there are trees on the side of the road, is enough flashing light to set off a migraine. It has shrunk my world - no concerts, no movie theaters etc due to sound and flashing light. I even have difficulty finding a church I can attend because the worship music is too loud for me. I'm this way all the time, it doesn't go away.
When I watch news and interviews from Europe, there are often warnings about flashing lights, that is never done in the US, it would help people like us and others bothered by flashing lights.
Thats very sad, u hit the nail on the head - it's shrunk my world!
I come from a very musical family, music is in their life all day every day. My son is a DJ too.
I feel bad saying turn it down, stop singing, stop whistling...
So I stay home in my silent bat cave!!!
I hope u find a church that suits ur head, it's important to u. Have u tried writing to the head of the church to see if he/she has any suggestions? There may be additional services/meetings that are quieter. Good luck 💋
I experience the same symptoms, but have also been diagnosed with POTS/dysautonomia (believed by Dr. Jill Schofield and Prof G. Hughes to be a co-morbidity of APS). Dysautonomia relates to the autonomic (automatic) nervous system.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.