Scleroderma & Raynaud's UK (SRUK)
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Thunderclap migraines

I was finally diagnosed after 18 months today with thunderclap after all these months of suffering and many visits to the doctors and been admited to hospital...least now i know whats wrong and i can only hope the new medication will help. I wouldnt wish this on anyone sometimes i feel like iv been robbed of a normal life has when the attacks come they last for 3 to 4 far this month iv had 5 attacks so the news i recived today was a weight of my shoulders has now ppl are starting to listen and i can shut the ppl up when they say "your always ill"

I had no idea that pain like this excisted i have 2 sons and child birth was a walk in the park compared to the thunderclap migranes.

Does anyone else suffer the same?

3 Replies

I dont get these sort of headaches, but i,ve heard that oxygen therapy is very good for them. Perhaps you have raynauds in your head if that makes sense?


Iv just started some new meds which im hoping will ease them so fingers crossed x


I have Limited Scleroderma and Raynauds and had these headaches when I was first diagnosed about 5 years ago. They were so painful and went into my neck shoulders and arms - so much so that I thought I was having a heart attack! I was prescribed AdalatSR (a form of nifedipine) for my Raynauds and the headaches went away.

About 8 months ago they started again so I had my Adalat dosage increased and the headaches have settled down again.

For me inkedup was spot-on - the blood supply to my head was being compromised by my Raynauds - hence Raynauds in the head!!!

Hope this helps. x


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