So I'm currently on the Verapamil as well as tapering off the prednisone at 5mg intervals every 3rd day. Just a question though, while in full swing I was still have my 2 episodes a day on the prednisone and Verapamil ? Did it do anything ? I am wondering if I can wean off prednisone a bit quicker ? I'm starting to dislike the side effects from it. I am a 29yo male in really good shape, no other health concerns, good blood pressure. Ok here's the other thing I'm about 4 weeks into my cycle an di have managed to go 2-3 days without an attack still followed by a 4AM hit on the 3rd day, now I'm down from my usually 2 a day but does anybody else have the same down cycle ? In the past I know the maximum I have had my cycle fopr has been about 5 weeks, then PF for 2 years. Any comments on both would be greatly suggested. O2 has been my saviour !

Hey! you never mentioned what dose of pred. you started on , but I usually start around 80 and step it down. normally i am PF from the first dose. I too took verap. If you are getting nightime hits, you may want to consider melatonin. It works wonders for alot of us here, me included. 12 mg's before bedtime, and I sleep like a log. I would strongly recommend NOT stepping down the pred. any quicker than your doc. prescribed. That can cause MAJOR rebound hits!!!! ( thats the voice of experience speaking) My most recent cycle was the first time i used melatonin and it worked GREAT. (i use o2 also). Good luck dude!!!     Tuck  

I took preds and verapamil my last cycle.  like you i was painfree for 1 or 2 days on preds then hits back to normal.  Got a shot in my butt of preds after that - nothing( meaning didn't touch the HA).  then started on the verapamil ( 660 mg)  and within a week hits dropped off.  No hits after 2 weeks .   Still shadowed at my usual times   4 or 5 pm and then 9 pm   , probably had a couple kip 3's  if that-  but no problem as compared to before the verapamil.   Red bull and coffee could kill them.

I started at 480 mg of verapamil then neuro added another dose of 180.   Not sure if it extended my cycle , but this past cycle was about 12-13 weeks -  ( past cycles were killed with preds alone in 2 weeks).  Also I had 4 year breaks in between cycles

At any rate- I'll do it all over again when next cycle comes - preds, verapamil, triptans , O2( I'll get a valve with a higher flow rate this time though)  

How many mg of verap are you on and how long have you been on it?

Kelly

Hey thanks for the info, see the problem is I don't have a family Dr because I just moved so I had to visit ER and was only put on 120 SR and I increased that amount on my own to 240 I know I shouldn't do that but it did seem to cut it down to the 1 episode a day and few days in between. I just got home from grocery store, trying melatonin tonight, seems to work for others on here. I guess it's a matter of trying different things and passing around ideas.  I have 02 with a 15LPM regulator. works wonders but I don't have a proper rebreather mask so I kind of modify it to get maximum flow. Anyways off to bed !

Prednison produces awful side effects. Ask your doc for faster tapering and to increase Verapamil (if your blood pressure stands).

BTW greetings from the old country [smiley=wave.gif]

PF,

Steve

So what did you decide to do? Did you wean off quicker?  Whats the status?

Sorry for not updating sooner, tapering off prednisone 5mg faster per day almost done, tried melatonin the other night at 12mg before bed, slept like a baby all the way through, got hit hard last night and this morning. Refilled my O2 today, O2 seems to be taking a bit longer to abort I thin due to my cheap mask, couldnt find a rebreather type, but it still works. Anyways enough of me being selfish, im sure there are others suffering worse thann me !!

Hi Kelly

I hate you are still getting hit-   nice you had a painfree night though-  Can you see your doc about the possibility of upping your verap or adding something to that?   There may be  another home medical supply co that has a non rebreather mask-  I had to ask specifically for mine_- or I would have gotten the cannula

good luck to you!

kelly

I dont understand Is there anyone who wakes up with them? and they last all day then in a week u have another thats been my cycle? :'(
Your eye hurts like a b@tch and If u lay your head on the pillow it hurts and u feel like on one side of your head is being crushed and u can fell the vessel in your head pulsating? :(

yes summer, most of us can relate! I for one use melatonin at bedtime, it has COMLETELY eliminated the "morning" hits. I believe most of us get "woke up" by the beast, and melatonin stops that. for most that is,,NOT ALL. thats why we come here and read and learn, and read some more and learn, and read EVEN more and learn. Read uup on the links on oxygen. You have come to the right place summer. I think life just got a bit better for you.  Good  luck,  Tuck

hi, i am new to these headaches, this is my second week, everynight when i fall asleep, the damn thing wakes me. i tried the rock star energy drink as soon as i felt it coming on. it worked. it stopped the pain almost instantly.

It's the first thing to make me realize I'm back in cycle again, that first nighttime hit. When you wake up in the middle of the night with an attack.
For some reason I always ignore the week of shadows prior. Ya know that river in Egypt? Well, that's me haha. But seriously, when I get woken by a CH, I know I'm back on track.

Pascal.

Hi Kelly,
I know you are tapering off the pred faster, but don't do that in the future without your doc telling you to. Pred has some bad effects on your body, and tapering off too fast can cause problems. It sucks taking it, as we all know, but it helps kick the hits while your preventative kicks in.

Have you tried an energy drink, like Red Bull, or Rock Star? They have taurine and caffeine in them, the caffeine helps, the taurine makes the caffeine work much better. It will kill shadows and maybe a hit, or take the edge off, if you chug one down.

You need to find a doc who knows about CH. Preferably a neuro. Don't increase or decrease your meds without your doc telling you to, the meds we take can be dangerous, and it's important to work with your doc.

Bob Johnson has some good links for material to print out to take to your doc, and the OUCH website has some great info too.

Check your PM's.

purpleydog wrote on Aug 16^th, 2008 at 7:59am:

Hi Kelly, I know you are tapering off the pred faster, but don't do that in the future without your doc telling you to. Pred has some bad effects on your body, and tapering off too fast can cause problems. It sucks taking it, as we all know, but it helps kick the hits while your preventative kicks in.

One of the effects is causing you fractures if you taper off of it too quickly. It can also throw you into a steroid crisis (your body quits making steroids, which can potentially kill you) and a number of other things. D: