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Newbie so please be patient with me


Tyke
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Tyke, the only "good" thing you can say for your docs is that they, like other humans who don't have CH, really don't understand the pain you're experiencing.  As we've discussed here, no one really can.  They can read about it, but if they haven't felt it, they don't really get it -- not even close.  That's not a good reason to deny you first-line treatment (oxygen and injectable sumatriptan at least, if not also melatonin), but it's often, if not almost always, the reality.  If you have someone who can come with you to advocate for you (with you), that often helps.  We'll be sending you good vibes tomorrow.  I don't know of anyone who has tried to get welding O2 in the UK, but let's assume you can do that if you get turned down (from a very quick google search, it looks to me like it might be feasible). 

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Progress? Yes but not as much fecking progress as I'd have liked. To cut a long story short, after a few well chosen sentences I have at least been referred to the Neuro for an emergency appointment and told they will prescribe the O2 and Melatonin if they believe I need it. Not quite what I'd hoped for but a step in the right direction I think. They also gave me an ECG, took some blood to test, gave me a new Prescription for Sumatriptan injections (but I don't know how many doses she's given me until I get to the chemists) and she's increased my dosage of Verap to 80mg 3 times a day.

I've been down in the dumps all weekend after my lvl8 the other day but I'm pleased to say that Leonard has only paid me his usual 1am visit since Saturday and he's fecked off within half an hour. As a result I'm not feeling too bad today and back to my usual chirpy self. Amazing what a good nights sleep can do to your mood.

Chin up and feck the pain.

Tyke

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  • 2 weeks later...

WTF? It's been nearly 2 weeks since the docs upped my dose of verap and since then, I've had one hit and even been shadow free for the last week. My cycles usually last 3 months so I can't quite believe I'm out of it but I'm starting too. I even went out at the weekend and feeling brave, I gave into temptation and sank a beer. Half hour later and I didn't feel a thing so I had another. 2 Hours later and I was a bit worse for wear but by crikey did I enjoy it.

Over the last few days I decided to take myself of the verapamil. I've been off for 3 days now and still not even a shadow. I don't know what's going on but I like it.

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  • 1 month later...

Bugger. He's back.

After an unexpected month of being pain free and thinking I could go back on the beer for the remainder of the summer, he came back last week. Leonard that is. Thankfully he's not as bad as he was and he's on the left hand side not the right but it's irrelevant which side he's on or how bad he is. I'm just upset he's back.

Thankfully I have a neuro appointment tomorrow by coincidence. Should give us something to talk about at least.

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