This may be a strange question:
When I'm feeling ill I can't tolerate noise and light. It's as though I'm being over stimulated.
Going out is hard sometimes as I just want to hide from the noise & bright lights.
Travelling in the car with the sun shinning, things flashing past and the radio on is like torture.
Going into shops with bright lights and disco music makes me want to run and hide.
I wonder if it is connected to Hughes. Does anyone else experience this?
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
You have had some great advice from Hidden , I hope your GP can help you when you have these episodes. MaryF
Hi,
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.
Kerstin
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).
Hi milkwoman,
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!
Best wishes from Kerstin in Stockholm
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.
Kerstin
It's the same in Australia. You have to have pregnancy loss or DVT/PE before you can be diagnosed and treated for APS. And they will not budge.
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.
Good luck to you.
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 have this a lot too. My poor kids are always being told to quieten down 😞. Too much to bear at times and my brain just starts shutting down.
Dr Sangle at the Louise coote clinic told me this is a part of the Hughes.
Hope you find done relief
L 😀
I was just thinking about overstimulation the other day. Along with your experiences I also can't tolerate a lot of talking.
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.
Do you have an odd sleep/wake cycle?
This is my poem, in answer to the APS one. It is about TIA's (mini strokes)
Do you work with APS, Can you work?
