Scleroderma & Raynaud's UK (SRUK)
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Thunderclap migraines

I was finally diagnosed after 18 months today with thunderclap migraines...so 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 days...so 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?

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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?

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

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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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