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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Cycle almost over, or at least I hope
        
(Message started by: PGrossi on Dec 25^th, 2006, 11:20pm)

Title: Cycle almost over, or at least I hope
Post by PGrossi on Dec 25^th, 2006, 11:20pm

Start with the basics, 39 yo, suffering from CH for about 10 yrs now. Back then, no idea what was going on. Doc sent me for a C-T scan, negative. Went to the dentist, nothing out of the ordinary. Eye doctor, needed glasses but not the cause of the headaches. By the time we realized I was a CHer, and a short stint on Ergotamine, the cycle was over. That lasted about 2 months. I do not think the Ergotamine worked, for it may have been at the end of the cycle that he gave them to me.

Second major cycle, 7 yrs ago. Doctor put me on some blood pressure meds, didn't work. 4 days later, Prednisone, 30 mgs for 3 days, 20 mgs for 3 days, 10 mgs for 3 days, cycle broken in about 4 days. Woo-hoo.

4 yrs ago, only lasted about 10 days, did not seek meds, wanted to see if the cycle would last longer.

This bout, I feel the worst yet. Started the Monday after Thanksgiving. Started slow and progressed. Cold water/ice packs worked for a while and stopped working. Only a few hot showers helped, others didn't. Went to the doc after 2 weeks (too busy to get there beforehand) and put me on Prednisone again, 30x3, 20x3, 10x3. After about 4 days, felt worse. Went back to the doc, put me on Imtrex tabs (100mg) and Vicodin (5-500) and had an MRI that day. First night on those (this past Weds), this Vicodins made me really sick, headache lasted 8 hrs, nausea, vomitting, and had the ambulance take me to the ER. Damn ER did nothing. Took an hour to get an IV, was all dehydrated. Asked for Oxygen, damn ER tech said my blood O2 level was at 100% and refused to give me any. Took 4 hrs for the ER doctor to get in to see me, after another C-T scan. Was going to put me on yet another med, and I yelled at him. I said, call my PCP and get a concurrence. I do not want to be taking a million different pills.

Finally, they both concurred to double my prednisone (60x3, 40x3, 20x3). Headache free for 72 hrs now. A few shadows along the way, but nothing more than a Kip1 or Kip2. Oh, is there a Kip15??? that is what Weds and Thurs nights were like.....

When not in a cycle, I may get a hit once a month or once every other month. My miracle cure (at least when not in a major cycle, is a Vicks Vapor Inhaler). Too bad it did not work for a full blown cycle. A few hits in each nostril and the pain subsides, 95% of the time).

Does anyone have any other advice? Any other ideas? Please advise. Like I said, seems like it may be broken, but have 3 more doses of Preds before the script is done.

One more question, when you believe a cycle has started, do you go to the doctor right away, wait it out to see if it is a real cycle, or what? I hate taking meds, rarely take Tylenols for hangovers or dull headaches.

Title: Re: Cycle almost over, or at least I hope
Post by PGrossi on Dec 25^th, 2006, 11:27pm

Oh, one more thing. Aren't people in the ER supposed to be Fragrance-Free???? The damned girl that came to get my info/insurance info, had on so much perfume (or could that have just been hyper-sensitivity to scents) that I had to tell her to leave the room, for she brought on another headache.

Title: Re: Cycle almost over, or at least I hope
Post by BigCoffinHunter on Dec 26^th, 2006, 9:36am

Imitrex tabs don't act fast enough for CH, need the injection. Find yourself a good neuro who understands CH and will work with you. ER visits are the most frustrating experiences for CH, after my first visit, I vowed never to come back.

Title: Re: Cycle almost over, or at least I hope
Post by Guiseppi on Dec 26^th, 2006, 10:27am

My experience with prednisone is it pisses off the beast! It'll block 100% of the headaches, but when you taper off they come back even stronger. Have a backup plan for when you taper off, it has never "broken" the cycle for me as the doctor had hoped, but does provide short term relief while you ramp up on a preventative.

Get thee to a neuro and discuss a long term strategy for these. By that I mean a preventative for when you know you're on cycle, I use lithium, others use topomax, check out and print out the links on the meds, there are many to try.

Then you need an abortive strategy. I use oxygen and oral cafergot in combo. The 02 stops it, the cafergot keeps it away. Others use just the oxygen and don't get the rebounder. These things ramp up so fast your oral pain killers and abortives don't get in fast enough, that's the beauty of the oxygen or in a pinch the injectable imitrex, they work fast. Good luck and start reading. there are bno cures yet but these things can be managed.

Guiseppi