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Topic: Newbie to board and to CH's... (Read 331 times) |
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Skoenig
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Newbie to board and to CH's...
« on: Aug 7th, 2003, 5:22pm » |
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I am new to CH's and to this website. I first started having h/a's about a month and a half ago and have had about 4 days free of one. I was first diagnosed with trigeminal neuralgia, which I learned I did not have after MRI, MRA and CT scan. However, I have now been diagnosed with CH's. My first neurologist started me on neurontin which helped some but then I went to 2nd Neuro who then tapered me off and started me on a new form of Inderal called Innopran XL - 80 mg once daily. I went 2 days free and then had 11 in one day this past Tuesday! That was special, especially being new to this headache stuff! He has now increased my dosage to the 120 mg and also to take Amerge 2 times daily for 5 days which he says will breack this cycle I am in.
Wow! I am longwinded, I know, but it is releasing to be able to speak to those who know....So, with that said, has anyone tried any of the drugs that I am on or in combination with each other? Also, any words of advice as what NOT to do that will definitely trigger another attack? By the way, have had no occurences today - fingers crossed!
Thanks for listening and responding - any help is appreciated greatly! It is nice to know there is help! 
P.S. I was reading where this is predominately in males, however, I am female and there seem to be many other females after reading previous posts.
Thank you!
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Jackie
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Re: Newbie to board and to CH's...
« Reply #1 on: Aug 7th, 2003, 5:30pm » |
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Hi Shoenig...
Welcome to the family....sorry you need to be here but since you do....welcome.
The drugs you mentioned have been used by different folks here with different results. Did your neuro suggest oxygen therapy? It works well for many CH sufferers.
Good Luck,
Jacks 
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ave
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Re: Newbie to board and to CH's...
« Reply #2 on: Aug 7th, 2003, 5:32pm » |
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Hello SKoe, sad if you have to be here! Have you done the cluster quiz yet? There are differences between Trig neuralgia, clusters and CPH, and many docs know the difference as well as I did before I came here - that is: not at all.
It is important to get the right diagnosis; there are very good meds for trig neuralgia as well as for CPH.
wishing you painfree days
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Skoenig
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Re: Newbie to board and to CH's...
« Reply #3 on: Aug 7th, 2003, 5:40pm » |
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Thanks Jackie and ave for replying so quickly! Nice to know someone is listening!
No, my doctor has not yet suggested oxygen therapy. And, yes, I have taken the quiz and it pretty much comes up as Ch's, as my ha's last from 15 minutes to an hour each time and trigeminal neuralgia is much shorter from what I understand. Am I correct?
Thanks again to both of you!
Susan
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Carl_D
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Re: Newbie to board and to CH's...
« Reply #4 on: Aug 7th, 2003, 5:49pm » |
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You're Doc was prolly accurate diagnosing you with CH. You've come to the right place! There is a wealth of information and support here.
DEFINITELY check into o2 therapy. It worked for me for awhile, and works for countless CH sufferers.
You may also want to ask your Doc about Zomig, Imitrex (injections work best, and they have a q-tip measuring thingy somebody invented here where you can get 3 effective doses out of one shot.) Inderal never did much for me. On it now. I often wonder what life would be like to never have to take another pill again....
Welcome to the fold Shoenig,
Peace,
Carl D "FREEK"
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ShariRae
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Re: Newbie to board and to CH's...
« Reply #5 on: Aug 7th, 2003, 6:16pm » |
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hi skoenig..welcome!
You may want to ask the doc about Verapamil..it is very effective as a preventative for a lot of us here..alone or in combination with other meds as well as O2. Read all you can here & ask questions...we are all in this together & do what we can 
Huggs
Shari
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JohnM
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Re: Newbie to board and to CH's...
« Reply #6 on: Aug 8th, 2003, 7:38am » |
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Hi Skoenig
Words of wisdom regarding what to avoid that will (almost) definitely trigger an attack:
Don't drink alchohol during a cluster cycle! For lots of people here that is a rapid trigger. For me it takes about 30 minutes after a single beer to start me off.
John
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Skoenig
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Re: Newbie to board and to CH's...
« Reply #7 on: Aug 8th, 2003, 7:58am » |
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Thanks tp everyone concerning oxygen therapy an other options that have worked for you all - I am definiteley going to suggest O2 therapy to my Dr. In addition, I think I will saty away from alcohol until this madness is over for sure!
This may be a stupid question, however, here goes....If I have gone a day now without a ha, could this possibly be over? And secondly, how do I now how long a cycle is for me, since this is new?
Many thanks again,
Susan
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SommelierCH
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Re: Newbie to board and to CH's...
« Reply #8 on: Aug 8th, 2003, 8:06am » |
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HowdyHoo,
I’d like to say, welcome to the family. The three things proven to give us Clusterheads some relief, can all be, and have been, prescribed by primary care physicians. We don’t need to see a Neuro to get these (for all of you out there, in lurker land).
These three things are divided into two categories:
PREVENTIVE:
Verapamil (calcium channel blocker) Sustained Release (please correct me if I’m wrong, people), takes about a week to kick in when at the start of a cycle. In the middle of a cycle…..?… IT’S CHEAP.
ABORTIVE:
Triptans: You know about Imatrix injections, there are also, fast dissolving, under the tongue, triptan tabs including: Maxalt MLT 10mg and Zomig ZMT 5mg. (These are the tabs that I use). IT’S EXPENSIVE.
100% pure Oxygen: This is the most important part for a Clusterhead. 10 liters/min. through a non-rebreathing mask. IT’S CHEAP AND SAFE….Check out this link about Oxygen, put together by Not4Hire and other family members.
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Check out the OUCH website, plus all the links here and arm yourself with knowledge. I know that my system gets confused with competing meds, perhaps yours does too.
I wish you pain free days and nights,
David J.
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judyw
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Re: Newbie to board and to CH's...
« Reply #9 on: Aug 8th, 2003, 8:20am » |
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Welcome, sorry you had to come, but best place to be with CH...sounds like you have been lucky getting such quick diagnosis and treatment...Inderal works for some great, as with most meds dosage is a key...mine started me on 180mg and tapered after three days, with a watch on the b/p...tapered until found my dose..and you will know...for me, no generic or time release worked...we each have to find our own pattern and with CH can vary for hit to hit...times, etc...Just put your feet up and keep reading...Lots of ladies to be found here, both supporting and suffering...You are not alone...
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SommelierCH
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Re: Newbie to board and to CH's...
« Reply #10 on: Aug 8th, 2003, 8:21am » |
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I have to agree wholeheartedly with jmorgan52, unless you know for SURE that alcohol is NOT a trigger, DO NOT TOUCH IT, WHILE IN CYCLE!! Especially if you are new to this. If anyone who is a drinker, and has not stopped drinking while in cycle, do it now. It’s like trying out a new drug for Cluster Headaches….for free. It can’t hurt.
David J.
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Big Dan
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Re: Newbie to board and to CH's...
« Reply #11 on: Aug 8th, 2003, 8:30am » |
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Hey.. sorry you're having to deal with the Devil, but I'm glad you've found us.
... You couldn't ask for a better place to get information, support (and give support), laughs and catch a flame war or two...
-Big Dan
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jajomo
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Re: Newbie to board and to CH's...
« Reply #12 on: Aug 8th, 2003, 8:43am » |
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hey skoe sorry you had to be here but you are in with a good crew who suffer the same as you.....a wealth of info here look around.......good luck.......mick
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River_Rat
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Re: Newbie to board and to CH's...
« Reply #13 on: Aug 8th, 2003, 9:54am » |
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HMMMMMM-- What else to say?
Welcome hun, You'll find that cycles are different with everyone, and meds also work differently for everyone.
I have 20+ years of this shit, My cycles usually last 5 to 8 weeks, there were a few times that I went several years without a cycle. But mostly they come every year.
This time around it was only a 5 week ordeal and I'm just finishing up (Bud Lite Again Soon) Amerge was a new found friend this time for me! 2.5mg am and 2.5mg pm I also use Verelin 200mg am and pm, With imitrex injections when I just couldn't take it any more, I try not to use the shots much.
Next Time (if I have a next time) I will try the 02, I did try it about 6-8 years ago and it didn't work for me but they have got it fine tuned now.
Again Welcome to the family, sending vibes from me to you, wishing you a short cycle, and to be pain free.
LEE
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Patrick_A
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Re: Newbie to board and to CH's...
« Reply #14 on: Aug 8th, 2003, 10:14am » |
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Hello Skoenig,
I am sorry to hear of your pain, but i welcome you to this excellent site. You will find great support as well as a lot of great information here.
Alcohol is a definite triiger for me. Anything with MSG is also a trigger, and that is almost impossible to avoid unless ya eat all natural foods. If i eat cheese, I get a headache.
Good luck, PFDANAWF, Patrick
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maggie_may
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Re: Newbie to board and to CH's...
« Reply #15 on: Aug 8th, 2003, 10:40am » |
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Welcome Susan!
Sorry to see you here, but glad you are. We're a great group of people and there's tons of support and information available here.
I can't help you out with your meds question, as I've never taken those before. But definitely ask about Verapamil and Imitrex if you can take them. Several people here do and, along with oxygen, it seems to work quite well.
wishing you pfdans
maggie
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stuey
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Re: Newbie to board and to CH's...
« Reply #16 on: Aug 8th, 2003, 10:53am » |
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Shoenig, I'm Stuey. Sorry you are here too. You might try Relpax for pain as well. Since you will become expert at detecting when you are about to have an CH taking one at the very beginning can abort the CH. I have been stupid at times when I get the feeling in my head and thinking oh well maybe it's not coming, but without fail it happened. Listen to your body and you will be able to detect the attack at the onset and learn when best to take your meds. Imitrex injections work for most people, although it can cause rebound headaches at times. The rebound headaches for me are not CHs. They hurt but not nearly as bad as the CH. Find out at the beginning of the site how to extend the imitrex injections. 2 mg helps some, I find that 3 mg. works for me since they come as 6mg injections. You can get rebound headaches, but there nothing compared to CHs. Only other thing I found NOT to do is I don't take naps during a cycle cause for some reason that brings the attacks on as well. I am currently taking 960 mg of verapamil SR and this has stopped my attacks. Some people can take much lower amounts of verapamil with success. I had to go up to 960 and have been virtually pain free for about two weeks. I also am taking elavil (amitrptyline) which is considered a preventative but it's also an anti-depressant (why they say this I don't know cause I'm still depressed). I will wean myself off the elavil in a week or two. Good luck and be pain free soon.
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Roxy
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Re: Newbie to board and to CH's...
« Reply #17 on: Aug 8th, 2003, 12:44pm » |
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I don't have much to add that everyone hasn't told you yet. I use imitrex injections (1/3 of a vial per shot), and 02. Verap didn't work too well for me....along with everything else the drs. tried. Just stay away from the booze while you're in cycle. It's a sure fired head banger.
Welcome to the family, lot of good people here.
PFDAN,
Tracey
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Mr. Happy
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Re: Newbie to board and to CH's...
« Reply #18 on: Aug 8th, 2003, 4:36pm » |
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on Aug 7th, 2003, 5:22pm, Skoenig wrote:P.S. I was reading where this is predominately in males, however, I am female and there seem to be many other females after reading previous posts.
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Hey there, Skoe!
Stange thing, that "Male Disease" issue. It's not a 6:1 ratio, but closer to 2:1........and dropping. This, and other exciting facts are available at the official CatlindTM
Convention Report 2003.
Please to meet ya, Ma'am,
RJ
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cathy
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Re: Newbie to board and to CH's...
« Reply #19 on: Aug 8th, 2003, 5:53pm » |
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Skoenig......Sorry you had to seek us out, but you found the best place for support and information, great bunch of people but watch out for DG... ;D
PF vibes to you!
Cathy
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Re: Newbie to board and to CH's...
« Reply #20 on: Aug 8th, 2003, 6:03pm » |
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welcome aboard susan! glad you found us, your homework assignment is research this & the ouch site for unlimited info. best of luck to ya! .............Jack
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Pushkin
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Re: Newbie to board and to CH's...
« Reply #21 on: Aug 8th, 2003, 9:55pm » |
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Skoenig,
Sorry you've become a member of this club. Besides the triggers already mentioned, chocolate and nuts are a trigger for me. I've had wonderful success with O2, but only after I found out that the nose inhaler was useless. The neuro didn't know about the need for a full face rebreathable mask nor did the medical supply company. Once I got the right mask (thanks to information from this forum) O2 has worked and kept me sane.
A wealth of information here - wishing you PF times.
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Skoenig
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Re: Newbie to board and to CH's...
« Reply #22 on: Aug 8th, 2003, 10:18pm » |
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Since I am new to CH's ( in th last 1 1/2 months), I have a few more questions for anyone who may want to answer: 1) in the last 1 1/2 months, I have had maybe 6 pain free days. And some days I only have one and some days I may have 10 ( the most yet in 24 hours). Is this typical? Do most people have the same number daily when in a cycle?
2) how do I know if or when they are in remmission? a week pain free...? a month pain free...? Is there some way of knowing I am about done with this and can go on with day to day life, or should I just stay at home forever! Ha! I feel like that at times!
Thanks again to all for helping me figure this thing out! I think my friends and family think I am bonkers! Hell, I was bonkers before these started a month and a half ago! 
Susan
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