jimyhertz wrote on Sep 30^th, 2010 at 12:43pm:


Kay now that's just mean!!!!

Joe

Jimmy... What I meant by the feeling like I was going to die... Not easy to explain, but I'd just got to the stage where the pain was so bad that I thought there was no way I'd come out of it alive. Definitely the worst hit I've ever had, couldn't talk, couldn't breathe properly, couldn't function... Just the worst pain ever.

The verapamil... Started taking it on Wednesday, only on 80mg this week. Not made much of a difference so far, still getting alot of shadows. Haven't had a full blown hit since last Friday but enough grumbles to wind me up. Dosage goes up to 160 from Tuesday so will see what happens.

Jersey Jen wrote on Oct 1^st, 2010 at 4:49pm:


As I've said previously, we all do know what you're feeling. This may actually be the only place on earth where we know what you're feeling, and having such a community helps a bit. Your verapamil dose is a little low it seems. How's it working for you now? lance

Jen,

For what it is worth - I tried Verapamil my first cycle (20 or so odd years ago) and it didn't work. Perhaps. This cycle my new neuro put me on 480 mg, then ramped up to 960 mg per day before they were under control. He was good - always checked my heart first. But I kept getting slammed every few days until I hit the 960 mark. I don't think that when they tried the first cycle, they raised the dosage that high.

Everyone is the different but you may want to talk to your doc about what the right dosage is for you....

for what its worth.

As for the fear of dying, there have been a few times that I was convinced my arteries had ruptured, that parts of my head had exploded and that perhaps I wasn't dying but oh so close to it. Had to ask a neuro many times for reassurance that this doesn't happen in CH.

Thanks Lance. Sorry about the post last night, was just mega frustrated after having a horrible day. Doesn't help when the other half told me to go to bed and rest because my "constant moaning and groaning" was getting on his nerves. I find that my tolerance levels and mood go from rational to completely irrational very quickly, and I ended up having a hussy fit telling him that I wished he could experience the pain just once so that maybe he'd understand. He came back with "when I don't feel well I always go to bed and rest and it makes me feel better". I did tell him that he's read the info on this site more than once but it went over his head, I lost the plot and had to take the dog for a walk just to get away from him for an hour. Was already hacked off by the total lack of energy, had so much to do yesterday, both at work and at home but ended up having to leave work after an hour and then did nothing for the rest of the day. I'm not in the office today so going to try and catch up with what I should have done yesterday. Were also redecorating at the moment so got loads to keep me busy.

Getting alot of shadows today but I'm hoping now that I've started the double dose of verapamil (was on 80mg a day, started 160mg today), I might get a bit if improvement. My neuro did say that he wanted me to start low up the dosage to try and find the correct one for me.

Hi Lance

Yeah I've tried red bull, didn't find it helped but still give it a go when I'm at home. Have to drink it warm too, drinking it cold made it worse (well, anything cold).

Had a lot of shadows yesterday but no full blown hits thankfully. Getting a few grumbles today but nothing major.

Really really grateful for you guys and this website, it's brilliant knowing that there is somewhere where the answer isn't going to be "it's only a headache..." etc. Makes the bad days a bit better which can only be a good thing!