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Title: First Post Post by ozzman on Jan 22nd, 2003, 1:49pm Hi all, thank for those of us that mostly lurk. I finally decided it was time to post. I have been suffering from CHs since I was 16 so that by now I am a 13 year veteran. I was only diagnosed 5 years ago when my wife decidedly thought there was something wrong with my HA. I have been diagnosed as episodic CH sufferer. The first symptom I get is I feel some pressure on my right eye. Followed by stuffy nose (one sided) and lacrimation. That is when the beast strikes. This when I start the "dance" pressing my head against the floor (while kneeling), rubbing my head, putting cold objects against my eye, etc. Before I was diagnosed, I used to do the dance, I guess it is just instinct. Use to take Cafergot (dissolved under my tongue)for my "Migraines" (as my family doctor called them). But then Cafergot didn't take all the pain away. I don't remember being hit with a kip 10 back then. I have had to episodes when I was hit by a 10. Before I was diagnosed my FP gave some Imitrex NS samples for my "migraines" (different doctor, same diagnostic) as well as some Narcotics (which BTW didn't do squat). One morning a Kip 10 hit, had no Imitrex, had some Cafergot, but it was only6 hors since I had taken the Imitrex. The pain was so bad i broke down and cried after two hours of the most excruciating pain in my life, you can relate. My wife drove to the ER where when I was finally admitted, because I TOLD them that Imitrex works they gave a shot. Whithin 5 minutes I heard the "crackling"of my skull and relief followed. After being diagnosed, my then neurologist put me on Prednisone and Imitrex NS and within two weeks the cycle had ended. After that I have been pain free for a couple of years at the time, so this is my third cycle in 5 years. Not bad at all! My FP after being diagnosed just prescribed my the Prednisone and Imitrex NS whenever a new cycle started. I said I've been hit twice with a full blown MFB (kip 10). This cycle I was waiting for the 11:00 pm CH so I decided to have a couple smokes while I waited (actually I had three). Sure enough it hit and I took one NS , but this time instead of going from a 2 to a 3 to 6 and then down, it kept going up and stayed there. An hour later I took a second NS by 2:00 am I was exhausted couldn't take it any more. My wife, my best supporter could only watch. She asked me if I needed to be taken to the ER. I refused, sooner or later it would end, besides I didn't like the idea of waking my toddler and newborn in the middle of winter for this! It was after 3 am whe it finally went down to a kip 5, exhaustion set in and I slept 4 more hours. During the attack I was so hot, I took my shirt off and HAD to go outside in the 20 degree weather, it felt sooooo good. My current Neuro, has me on Verapamil (240 mg a day), Imitrex and Oxygen. I have not tried the O2 yet because of long paperwork being handled by the Neuro's office, any day now. With the Verapamil, the number of CHs have diminished but instead of the usual symptoms I get a dull headache for hours at the time that finally progresses to a CH. I have to check in the mirror to see if my eyelid is dropping, THEN I know the beast is coming, and hit the Imitrex. Sorry to be so winded. PFDAN to all. Ozzy |
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Title: Re: First Post Post by cbolony on Jan 22nd, 2003, 2:19pm ozzy i see you use imitrex nasal spray i used it a couple of times but injection are the best.I had 3 cycle in the last 7 months lasting 6-8 weeks each,in one now.Just keep asking question to the people on this board they are the best they help me a lot and showed me that i was not a LONE in fighting the beast.And ozzy i dance 3-4 times a day.Stay PF |
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Title: Re: First Post Post by Mr.Happy on Jan 22nd, 2003, 2:37pm Ozzy, Glad you bought a Season Ticket instead of peeping thru the hole in the fence. There's always room for one more at the dinner table....... I'm not one to yap about meds, since I respond to minimal doses of everything quite well, but....... You mention that since you started the Verapamil, the number of hits has diminished. It might be a good idea to talk to the Doc about increasing your intake: Verapamil must be administered at relatively high dosages to be effective (120-160 mg t.i.d.-q.i.d). Short-acting forms of verapamil are generally more reliable than long-acting forms due to variations in bioavailability. Thus, long-acting forms often require upward adjustment of dosage. http://www.mhni.com/faqs_cluster.html#treatment On Imitrex: Quote:
Don't throw your nasal spray away just yet......but DO talk to the Doc about keeping a few "jams" on hand for the more serious bouts. On oxygen: Quote:
I was also plagued by the paperwork factor when it came to O2. Made the choice to pay for it myself, and sort thru the forms later. One script and 35 minutes later, I was sitting in my living room "Bagging It"........and pain free in minutes. If you want to wait for the forms to clear, that's your business.....but Matey......I'd get that script filled pronto and start huffing. Heard everyone in here ranting about the benefits of O2, and, like so many skeptics, gave it a "Yeah.........right...". Dopey me. Don't be a dopey you. Get O2, yesterday, if possible. Quote:
No worries! As an aficionado of Chili, being long "winded" is a matter of public record. Tickets, please........ RJ http://www.drfeller.com/clustology/clchurch.jpg |
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Title: Re: First Post Post by fubar on Jan 22nd, 2003, 2:54pm Quote:
That is exactly what happened to me... I dismissed the notion that something as simple as Oxygen could kill pain when morphine, demoral and any narcotic you want to name won't even touch the pain. There is a lesson in this for CH sufferers... just try the damn Oxygen if you can get it. You have NOTHING to lose. It's not like Topomax or Lithium or (fill in the blank) where you should be looking at the pros and cons, weighing possible side effects against possible benefits that may never arrive. Oxygen is honest to God help in a non-narcotic form. Try it, you'll be amazed. -Fu |
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Title: Re: First Post Post by BruceD on Jan 22nd, 2003, 3:00pm Ozzman, Listen to Mr. Happy. I am a fellow newbie and in my first post he told me to get off my duff & get to the doc & get things going. Next day I had the apt. & O2 was delivered that very night. I must say that I really hate taking any meds but I hate CH's more. I'm evaluating what meds to try besides ergotamine, but for me the O2 works wonders. This cycle I'd wake once or twice a night with a K9-10 but now I hit the O2 right away upon being awakened and it works great. What used to be shear agony of K9-10 for 2+ hours is now no worse than K7 and within 20 minutes total relief. |
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Title: Re: First Post Post by ozzman on Jan 22nd, 2003, 3:34pm Thanxs Mr Happy, Fubar and Bruce D. for the advice to get the Oxygen ASAP. as I type this I'm on the phone with the medical supply company to check on the status of the "certification". I'm not sure if I mentioned that I live in New Jersey, the worst state for regulations, laws, taxes, car insurance, health insurance, etc. Without the insurance, no O2. It's ok though since the CHs seem to be hitting me during working hours lately. No O2 at work. Imitrex works. I will however ask the doc to up the Verapamil. I'm not sure if I mentioned this before, but before the Verapamil I was getting these MFs every 6 hours for weeks. That is a LOT of Imitrex! Good thing we had a savings acc. Just left a message for the doc about dosage, injections and O2 status. Thanks all for the support |
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Title: Re: First Post Post by JDH on Jan 22nd, 2003, 3:56pm Hi Ozzman, sorry to find you here but this is the place to be when the beast comes calling. I just want to chime in with the others on the o2. I have recently started using it for the first time and so far it has worked better than anything I've tried yet w/out any bad side effects. Hope you get your o2 situation straightened out soon because it's definitely worth a try. PFDAN's to you. |
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Title: Re: First Post Post by 2late on Jan 22nd, 2003, 6:42pm welcome to the board ozz! trex in the nasal spray form didn't do nothin' for me.......but the injections work wonders. 02 is best if it works for ya, it's pretty benign stuff. good luck! ........2late |
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Title: Re: First Post Post by domm on Jan 22nd, 2003, 6:54pm ozzman - welcome. Now that you're convinced that the O2 will slay the beast, talk to your doc about upping the dose on the Verap. It is doing what its supposed to do. I started low and saw the diminshed intensity and frequency, but it wasn't until I upped the dose by 50% that I got totally PF. You're on the right path and in the right place hang tough domm |
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Title: Re: First Post Post by rick on Jan 23rd, 2003, 1:39am Welcome Ozzy, Sorry that you have to join us but glad to meet you anyway. The best advice I can give is to educate yourself as much as possible through use of this site and the OUCH website. Compare and contrast your own experiences with ours, and hopefully you will achieve some amount of relief from this devil. Peace, -Rick |
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Title: Re: First Post Post by suzy617 on Jan 23rd, 2003, 2:57am Welcome Ozzman, Sorry the beast has come to visit. Although this year I finally tried Imitrex and it worked great, I will make sure next time around I do the 02 thing. Most people here will say that its a great abortive. suzy |
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Title: Re: First Post Post by Charlie on Jan 23rd, 2003, 6:19am Welcome Oz. It's a big club here full of all kinds of people who know exactly what you're going through. Listen to them about O2. Once you're okayed for that, the users here can give you all kinds of clever ways to make getting O2 easier and ways to make it more effective. I don’t know much about it as I don't have experience with newer treatments because I’m in a long remission. It’s now your turn for remission. Stick around. Charlie |
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Title: Re: First Post Post by ozzman on Jan 23rd, 2003, 8:45am Thank you all for all the wonderful advice. I have read all the information contained here. As a matter of fact when I finally got to see my Neuro, he said "Oh, you already come with the diagnosis!" However he did agree with it. Not only did I have the diagnosis, but I gave him the list of chart with meds comparisons (from the OUCH website) and my CH diary. I asked him if he thought I should have MRIs, CAT scans or something, he said: "You've had this thing for 14 years, if it was a tumor, you'd be dead by now" LOL! My kind of humor. Anyway thanks all...Hopefully this cycle is on its way out. PFDAN. Ozzy |
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Title: Re: First Post Post by ZAIRA on Jan 23rd, 2003, 2:19pm Welcome home Ozzy, Your story is very similar to mine. I’ve been suffering CH since I was 14 (now I’m 24) I have many cluster’s cycle during the year. Thank you for your experience, I like your temperament! Good Luck and many wishes from Italy. Zaira :-* |
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