HELP HELP HELP!

Ive been in cycle now for just coming into my 5TH week, my cycles normally only last 3. Ive been taking melatonin for 2 years and managed to keep the beast away for an extra year but the son of a bitch is making me pay for it now!!

The daytime attacks have stopped or are at least managable 'cause i can catch them early with O2. Its the night time attacks that are the problem. As usual with us us 1 hour (to the minute!) after i close my eyes to sleep they start and then continue every time i nod off. Im currently taking 200mg of verapamil (before bed) and melatonin.

Im at my wits end! im getting around 1 or 2 hours broken pain filled sleep a night and im not sure how much more i can take. If i nod off in the day the same thing happens, im staying awake for 1-2 days straight but that seems to make it worse. I cant think straight,cant concentrate, im permanently on a short fuse my head is constantly sore,my appetite has dissapeared,im living on red bull,coffee and pro plus! i occasionaly get 3 or 4 hours then seem to have a good day but f**k does it make me pay for it after!! I cant work because im permanantley exhausted but after 5 weeks off things are getting desperate!!

Can anyone recommend anything for the night attacks.If i can sleep i can take anything the beast throws at me but the lack of it is driving me insane,theres no let up! The more tired i get the worse the night attacks seem to be but i cant get any rest to make them better. After a month without sleep things are starting to get REALLY funky.

At this point if knocking a 6inch nail through my skull would make this go away id do it with a smile on my face and think myself lucky for it! F***K, the way i feel right now i may just try it!

HELP HELP HELP HELP HELP HELP HELP HELP HELP

At this point i just want to say that i have the BEST wife in the whole wide stinking world! She has been nothing but a pillar of support help and understanding. Im a 6ft 14 stone lump of growling misery and she has nothing but smiles for me.

Sonia I love you. There arent words to express my gratitude!

Thanks for reading my rant,its helped!

Any practical help or advice would be massively appreciated.My appologies if it doesnt make sense at times - its taken an hour to type, i just cant focus man!!!


Simon.

Red Bull might also keep you awake at night if you're not used to the caffeine, but you'll probably find that your body gets used to it pretty quick, so don't rule this out as an option. I know it works wonders for me late at night.

calisto wrote on Jul 4^th, 2010 at 11:40pm:


Episodes work their way in to a peaking period sometimes, what seems the worst part of it.  At this time, the ways we deal with CH to get by may come up short. 

The verapamil dosage you're taking may not be effective enough.  Whereas a certain dosage might usually hold, I've had to move up gradually higher at times to get relief, in fact to 720mg divided up in a day for short periods. 

Before thinking the verapamil might not be effective, ask your doctor if the dosage could be increased gradually since your system is already familiar with it now.  That is, if you've not had side effects that may limit this option.

It's not clear whether you are using Verap. from time to time in an effort to block night attacks OR are you taking this dose every day for long term prevention. If the former use, it won't work. This med takes some days to become effective and it requires rather higher dosing for CH prevention.

An old med which is helpful--if you can find it (check with the drug store)--is ergotamine, 2mg SL. Dissolved under the tongue about one-hour before bedtime, it often blocks night attacks and attacks which are triggered by exercise, etc.--any activity which raises the body temp.

Give your doc a call and let him know you're getting creamed. When nothing else would work I'd occasionally go on a prednisone taper, in the middle of a cycle, just to get caught back up on rest.

As others have mentioned, your verapamil dose is relatively low. Some on the board go as high as 960 mg a day to get relief. A short 10 day prednisone taper should give you a break from the beast while he ratchets the verapamil dose up. Hang in there.

Joe

Are you taking the sustained release version of verapamil, or the standard, "all at once" formulation? If you don't know, you should find out. Then insist on the "all at once," non-sustained type. It has been proven to work much better for CH.

Karla, a single 2mg dose of ergot. is not a threat. Using both triptans and ergot. on a daily, full dosing basis--yes, not good.

But, since ergot. is a prescription med, she will--as we all should--discuss our meds use with our docs.

JustNotRight wrote on Jul 5^th, 2010 at 3:30pm:

Correction: Sustained Release Verapamil doesn't work very well for the vast majority of CH sufferers. If it works for you, good on ya. Please don't miss my point.

Obviously, whatever form he's taking is either the wrong type or not enough.

I'm tailing off finally from a cycle that has lasted 2 months, the worst one ever.  Prednisone and verapamil have been effective in getting this under control, but the Dr. had to increase the verapamil three times before any effect.  480 mgs. seems to be getting it under control for me so people's advice about discussing increased dosage seems to be appropriate.  The only way I was able to get any sleep was with Lunesta.  Up until a week ago I hadn't slept more than an hour or two - same stuff you describe.  Hang in there, good luck.  George

WOOOOOOOOOOO HOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!

7 HOURS SLEEP AND FEELING GROOVY!!!

Increased the verapimil slowly over the day to 280mg worked a treat! it could just be a flash in the pan so im going to increase that to 320mg today. I can feel the beast crawling around behind my eye and in my neck but its only niggly and isnt getting any stronger. Ive slept and i feel good.

SO COME ON YOU HAIRY ARSED BASTARD YOU WANNA HIT ME TODAY GIVE IT YOUR BEST SHOT COS IM READY FOR YA!!!

The suns out (in enland honest!) the birds are singing and all is groovy,at least for now.

A BIG thank you to all replies and advice. What a difference a nights sleep makes!

Ive got a medical on monday for my immigration visa ( to Australia) does anyone know if the verapamil will effect the result of any blood tests?

Well i kinda guessed i would have verapamil in my blood but the leaflet inside the tab box said it could affect the outcome of a blood test.

Im seeing my doc later today,ill ask her.

Ahhhhh Poor Calisto has been initiated !   

Glad you got a good nights sleep it's about time!

Be PF!