I have just come out of hospital. I woke up on Tuesday morning with the worst headache ever, like somebody had hit me over the head with a cricket bat. I was also vomiting and not feeling at all well. NHS direct redirected me to the hospital where I was kept for two days while they did scans and tried several times to to a lumber puncture to establish whether or not I had a bleed in my brain. I know how to enjoy myself.
Does any body else have what the neurologist called Thunder Clap Headaches? Is it part of CTD and or Scleroderma? Is it part of the problem or part of the solution- I'm on high dose Golimumab and Leflunomide.
Ax
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i was diagnosed with scleroderma in 2000, but in 1998 i had terrible head aches for three solid months,the dr. gave me migrane meds and muscle relaxers. never in a million years did i know what was ahead. i believe if they had tested ANA in 1998 it would came back speckled,like it did in 2000.
i have not heard of thunder clap headaches before, they were migrane like but as i later found out the light sensitivity had to do with the scleroderma and also the arthritis in my neck caused some of the tension headaches. also the skin on my scalp has become tight with collegen but i still have my hair thank goodness.good luck~
with me it is the scleroderma, my scalp now has deep ridges in it it did not have before,also my scalp is not tender at all, but after 11 years i still have my hair.
Hell. I still have so much to learn about this horrid horrid disease. I was only diagnosed a few months ago- I can already feel my skin tightening on my hands and feet, now on my face too and presumably that is what is going on with my scalp too. How come it is so fast with some people and not with others. Are you on any meds that actually help? Ax
i was much tighter in the beginning, my dr. told me the testing showed i had all the CREST problems but i was a little more involved. i have lost some lung power,so make sure you do not smoke. i never did but it makes it much worse. the dr.started me on prednisone and methotrexate combo. i still take 5 mg. of prednisone everyday for the arthritis. about 7 years ago my stomach got really bad so i went off the methotrexate and did not go back on. i take nexium daily for the reflux,it is good medicine. when i have bowel problems from bacteria i eat alot of yogurt and take tetracycline for a few days.i never eat fresh vegtables or fruit it makes my stomach worse. the worse thing you can do is sit around and dwell on the disease, i also take zoloft for depression that usually happens as well. at 11 years into this i am on disability,my hands are very crippled, i have big red spots on my face but everyday i get up, clean my house, feed my dogs, walk them and try to see my kids and grandkids every weekend. scleroderma is not going away so we just have to make the best of it. best wishes!
Thank you so much for sharing all that with me. It is interesting to hear from a fellow sufferer. I agree with you that the worst thing one can do is to sit around and dwell on this horrid disease. It simply isn't worth it. I am still working, (I am and artist) I still walk my dogs from time to time and have two wonderful grand-daughters who live in Dorset which is about 3 hours too far from me. I am also embarking on yoga, which should be interesting as I don't bend well at all.
I have awful headaches, every day for nearly 2 years now. Some days it feels as if I've been hit with a bat, but it's the lingering constantly there feeling that drives me nuts. Neurologist put me on Depakote Er 500 once a day. I had to stop taking that because it was causing water weight gain which wasn't good. I'm already on two meds for edema. The Neurologist said it wasn't migraines and I've never heard of Thunderclap headaches. I had to have MRI's and a Nerve Conductive Study test.
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