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Cluster Headache Help and Support >> Getting to Know Ya >> newbie
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Message started by seth437 on Oct 10th, 2011 at 6:23pm

Title: newbie
Post by seth437 on Oct 10th, 2011 at 6:23pm
hello, my name is seth and i have been on this site looking around for a few days and finally decided to add myself to the message board. I have had ch for for 14 yrs...it took 8 yrs for me to fig out what it was. I am episodic and usually have 2-3 bouts a yr and usually lasting about 3-5 weeks with 1-3 a day. I am currently in a series that started about 2 weeks ago...this series has been a bit different this time..i have never had one in the early afternoon and it has happend twice in the last 4 days. I usually get mine at 5 on the dot...also they seem to be lasting a little longer than usually through this bout..saturday it came on at 12:30 pm and lasted 4 hrs...4hrs of hell...then subsided and I got another at 10:45...that one was more usual for me and only lasted 2hrs. Like most of you i have tried pretty much everthing that you all have with limited results.. i made a dr appt. but my dr. had left the office and they issued me a new one...he was totally clueless about ch and said he would call in percoset, thats prob  not spelled right..I cant spell for shit so get used to it haha..anyway i new that wouldnt work and told him to hook me up to oxygen and he looked at me like i was a moron or something...gotta find a new dr asap...I cant believe some of the posts and stories i have read on here...its like we are a cult or something lol...we all do the same things to cope...I pace, I squeez my head so hard that i feel like im going to break my skull, I tap my head with my remote about as hard as i dare, have broken one before...but when i logged on here and started reading that alot of you do the same things i was like...omg, im not the only one that does this shit to cope... it was nice acutally to read that stuff. anyway i'm on here now and I will try to be on daily...please any comments on why you might think that my headacheas are not as predictable as they used to be and why im getting them early afternoon...im puzzled to say the least.. Nice to meet all of you  :)

Title: Re: newbie
Post by seth437 on Oct 10th, 2011 at 6:34pm
hey again...just wanted all of you to know that  i'm an open book so don't hesitate to ask me anything

Title: Re: newbie
Post by AussieBrian on Oct 10th, 2011 at 6:54pm
G'day Seth, and welcome to the nut hut. As you're working out for yourself, the beast can constantly morph just to keep you on your toes and interested. It's more fun than the annual fair.

As to percocet, it's pretty much universal here that narcotic type drugs are not the way to go. There's been some horrible stories and few good ones to balance it out.

Best bet is seeing a neurologist, preferable one who specialises in headaches but in the meantime it's full steam ahead and damn the torpedoes.

Welcome home.


Title: Re: newbie
Post by ttnolan on Oct 10th, 2011 at 7:30pm
Welcome home.
Besides the obvious answer that the beast is totally unpredictable... I would ask what you have been taking as far as meds, for CH and otherwise. I keep chasing this one myself in hopes of finding answers, and after 36 years I keep coming up with the same answer... "The CH is what it is". Anytime I think I find something that is making it better, worse or just different, I am contradicted in the next cycle, or the one after.
My certainties:
1. O2 is an amazing abort.
2. Alcohol will trigger a real bitch.
That's it!
Hope you can get your O2 soon.

Title: Re: newbie
Post by B.Baer on Oct 10th, 2011 at 9:34pm
Hi Seth,

Welcome to our dysfunctional little family... Yes we all react in similar ways, strange but true.

+1 on the Oxygen abort for me- High flow demand valve here...

+1 Alcohol being a trigger... I also perform the "beer" test when I think I'm out of cycle....

Read... Read... Read... ask Questions... Repeat.

Great amount of knowledge on this site. Familiarize yourself with the menu to the left of the page. Many interesting and helpful things are to be found there.

Relax and stay awhile, I have gotten more information from this forum then anywhere else.

Try and find a Neurologist, with experience in Cluster Headaches... easier said then done I'm afraid, but well worth the effort. Let us know where your from and we might be able to help.

Many knowledgeable folks will be adding their input and once again... Welcome aboard.
Baer

Title: Re: newbie
Post by Guiseppi on Oct 11th, 2011 at 9:06am
Welcome to the board Seth. The faster you can get referred to a "Headache Specialist Neurologist" the better. We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE


Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

There is a post in the meds section, "123 pain free days and i think I know why."Read this post, it’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

Clusterbusters.com

As to your cycles changing.......sadly that's one of the traits of the CH beast. Just as you start to get a good feel for your cycles, he'll morph.


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe


Title: Re: newbie
Post by b.g. on Oct 12th, 2011 at 11:23pm
welcome!
I am pretty new here myself, but I had to smile when reading your post and remembering the way I felt when I first saw this site.   yup, we are all whacked out together in this little game.

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