Have a long story but going to try to keep it short. I’m a long time sufferer but was fairly well controlled until last year. My “cycles” have gotten longer and harder to break and they’ve gotten closer together as well. This cycle has been going on since July 3rd. Right before this one started I had my 2nd round of botox, we did a round of steroids in July and August, nerve blocks, added 300 mg zonegran, then increased to 400 mg last week. We tried Reglan (which makes my heart race and thorazine (which killed my blood pressure). At one point I went to the ER after taking the Frova and Zofran still had me at a 10 and got IV reglan, benedryl, decadron, morphine, and toradol. It helped for less than 24 hours and still didn’t get rid of it completely. I fluctuate between a 4-7 typically during the day (with at 1-2 days higher), with the pain and pressure almost always on the right side of my head, mostly behind my eye. The top of my head hurts too but it is usually more of a prickly sort of sensation. But it is non-stop – there is always at least some pressure and pain – and I’m constantly nauseous (lost 15 lb and not that big to start) and suffering from really bad vertigo. I have dysautonomia as well, which makes this more complicated and hard to treat. Mostly this has taken the form of dropping my blood pressure, particularly when standing. And everything I do – reading, computer, watching tv, exercising, evening standing up to go to the bathroom, makes the headache worse. Even with the screens dimmed and sunglasses on. Just trying to research what I should do leaves me sicker. I’ve been unable to work for almost 2 months and I feel like I’m pulling teeth with my neurologist. They were supposed to do an SPG spenocath, but the procedure didn’t work out. I take magnesium, B2, and CoQ10, I’ve tried feverfew and butterbur (which didn’t work out bc I’m allergic to ragweed). I’ve tried elimination diets. I still exercise even though it hurts. I don’t know what do, what to ask for, what to expect. My abortives (Frova and Fioricet) are no longer working, even though I only use them once a week when I absolutely can’t take the pain. Is there really nothing else out there for me? I know I can’t do DHE because I have Raynauds, but surely there is something else….
Also, I take a beta blocker (nadolol) for tachycardia so serves double purpose and keppra for a movement disorder.