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        New Message Board Archives >> 2002 Posts >> Hello from Souther Cal
        
(Message started by: Darkelf on Sep 15^th, 2002, 5:05pm)

Title: Hello from Souther Cal
Post by Darkelf on Sep 15^th, 2002, 5:05pm

Hi Everyone,
I am sufferer of the "beast". They started 2 years ago right after I had dental work to remove what remaining teeth I had. It was during the period that you are waiting for the swelling to go down, so you can get your temp Plates relined.

After consulting with my doctor and being sent to ENT specialist who ordered up Cat Scan and various other tests, I gave up on the whole lot and called my dentist and shared the symptoms. They immediately relined my dentures and surprisingly the pain went away and never returned....until now. (sigh) Exactly two years later to month (august), they started again. Slowly for the first 2 or 3 weeks...maybe 2 or 3 episodes a week. I recognized the pain and the symptoms and went back to my GP doctor. He told me migraines and after searching the web found this site and more correctly they are "cluster headaches".

The pain starts approx same time every day. Around 12 noon and again at around 5:30 pm. The pain is around the jaw joint or just a fingers width from the ear towards your nose. I started this session in August with the pain on the Left side and now has migrated to the right side same area. The symptom begins with a tightening feeling or clenching in the of the jaw...then quickly spreads or radiates out from there. Within ten mins you are full bore and the pain is.....well what can say that hasn't already been said. YOU WILL DO ANYTHING TO STOP THE PAIN! I keep telling people that and to this date I still dont think people take us seriously. I got on my knees in the ENT's office and begged him to hosptialize me 2 years ago. He refused. I have sit in my doctors office with tears in my eyes crying, pleading begging for anything, morphine whateve to knock me out to stop the pain. I have screamed, cried, kicked, stomped, OD on tylenol with codiene, curled up in a ball on the floor or corner, par broiled which ever side of my face the pain was on with hot wash clothes so hot they have burn my hand...
Nothing Nothing Nothing has stopped it.

However, this session the doctor prescribed Imitrex tabs and vicodiene. The vico... just takes the edge off barely on a good day, with a tail wind, going down hill...chuckle. The Imitrex kicks the pain in 20 to 25 minutes....THANK YOU, JESUS!

So, I have survived this set with 2 to 3 episodes a day lasting from 25 to 45 min per episode. The third episode in any given day is random... what fun that is :)

I have about two weeks left, if it follows the same pattern as two years ago....if it doesnt...God help me!

One more little added feature. My ins company will only pay for 9 tablets, 100 mg every 30 days. My doctor has asked for extended coverage and they have refused. Over the counter cost without ins is $143 per 9 tablets. Doesnt take long to do the math to realize a $1000 dollars gone. Another little side effect, that gnaws at ya.

Now I have since learned from this forum to cut the 100 mg tablets in half. But a warning goes with that. This last week, by only taking 50 mg, the pain lasts for 45 min instead of 20 to 25. So between a rock and hard place, deal with the extra 20 min of pain and stay with the 50 mg.

The first time I had this pain two years ago, no one ever suggested it was migraines or cluster headaches. I suffered the full blunt force of each of these attacks for 2 months. Trust me when I tell ya, I understand the depth of the pain and what it will do to you and I live in constant fear that the Imitrex will fail, with each and every episode.

Please forgive the length of this post, this is the first time I have talked to anyone who suffers from...."the beast"!

John

Title: Re: Hello from Souther Cal
Post by Svenn on Sep 15^th, 2002, 5:08pm

Hello,and welcome to "Clusterville.You are now among the best friends ever ,and a lot of us are doing their best to help fellow clusterheads.Just pop the question,and some of us always answer.

Your friend in Norway

Svenn :) :) :) :)

Title: Re: Hello from Souther Cal
Post by Jim R on Sep 15^th, 2002, 5:18pm

Welcome John. Your story has familiar elements to most of ours. I think you'll find help, support, and friends here. Good luck and PFDAN's to you. Jim R

Title: Re: Hello from Souther Cal
Post by Darkelf on Sep 15^th, 2002, 5:28pm

Svenn,
Thanks bunches for the welcome. Questions? Questions? ROFLMAO! God, I got a million of them.

Lets start with acupuncture. Has anyone every tried this route? If so, what are the pitfalls and what are the treatments like? How expensive are they? Do they seem to work?

Title: Re: Hello from Souther Cal
Post by Darkelf on Sep 15^th, 2002, 5:33pm

Hi Jim R.,
Thanks for the warm welcome! Yeah, hope is definitely as much in need as the meds sometimes. Friendship and knowing that you are not alone is definitely a big boon to surviving the beast. On a KIP scale, I am between 8 and 9 for most of the time now. This is exactly the same way it did me two years ago. Towards the end of the session about week 6 or 7, the duration and intensity increased. My heart and soul goes out for those who live with these daily...

Title: Re: Hello from Souther Cal
Post by 2late on Sep 15^th, 2002, 5:36pm

welcome to the board John!! you should be glad you found us, it's the best thing about CH, all the knowledge & support around here! ;D .............2late

Title: Re: Hello from Souther Cal
Post by Darkelf on Sep 15^th, 2002, 5:42pm

Hey 2 late,
Much thanks! Searchin thru the site now...lots of goodies and stuff to try translates into hope.

thanks again.

Title: Re: Hello from Souther Cal
Post by domm on Sep 15^th, 2002, 6:50pm

D'elf - get thee to thy doctor and demand Oxygen!!!! Its cheap, most docs have no problem prescribing it and it will kill the beast (when used properly) within 5 - 10 minutes. Read on the medications board about how to use it. 10 to 15 lpm with a non rebreather mask.
Print out the info you find under the medical info button on the left and take it to him. Go to the OUCH site and read through dealing with a doctor who hasn't got a clue. They also have helpful info on insurance companies. Glaxo Welcome also has a 800 number for help in getting what you need. Look on the box.
Use the search button and type in *oxygen. it will bring up all kinds of info that will help.

Sorry the beast has invaded your life and that you felt compelled to seek us out, but welcome and good luck
domm

Title: Re: Hello from Souther Cal
Post by Darkelf on Sep 15^th, 2002, 7:07pm

Domm,
Thanks for the info...so much info so little time...*G* I briefly went over to the OUCH site and then back here again but it is most definitely on my list.

I will check out the oxygen thing and let you know what happens.

Thanks for the welcome. Believe it or not I can think of more interesting places to be....snicker....but boy...am I glad you guys are here ;)

Title: Re: Hello from Souther Cal
Post by Charlie on Sep 16^th, 2002, 12:24am

Welcome John:

As Svenn says, this bunch really understands. We've been sceaming and crawling around just like you. You asked about acupuncture. It's nothing I've tried and I doubt it's for me. I'd try more conventional stuff first.

Anyway, stick around. You'll find good support and likley some help in one form or another.

Charlie

Title: Re: Hello from Souther Cal
Post by paul_b on Sep 16^th, 2002, 12:47am

Welcome So. Cal. brother. I root for UCLA and death to the Beast. Drink your coffee, inhale your O2, take your Imitrex and whatever else works for you. Focus on the joy of the pain free hours, it helps with the anxiety we all feel during our cycles.

Title: Re: Hello from Souther Cal
Post by Darkelf on Sep 16^th, 2002, 5:07am

Hi Charlie,
Thanks for the welcome. Well its 3 am and you guess why I am up this time of the morning...snicker. This one was the random one. Yup, I was deep into a dream and wide awake now...*G*

I question accupuncture out of curiosity. I currently researching some of the different herbs to see if there is anything or anyone out there that might work. Been looking at Feverfew...but I am on BP meds and need to be careful what I take. I plan to consult with my GP on the 26th of this month and get his input. In the mean time, its conventional stuff all the way. :)

Thanks bunches for the reply...it gets quiet around 3 am...(smile)

Take care.

Title: Re: Hello from Souther Cal
Post by Darkelf on Sep 16^th, 2002, 5:18am

Hey Paul,
Top the morning....early morning...chuckle. Ok so its still dark and I will be heading back to bed after this post.

Yup Yup Yup, on enjoying the free time. Plan to do some more dungeon delving in the archives here and then move on to OUCH. Lots of good stuff here.

I am Deaf, Paul. I have Meniere's Syndrome and lost my hearing 4 years ago. Also, lost my faith in the Medical community at the same time....LOL Well, maybe not all of it..but certainly gotten shaken and not stirred. *G*

Anyway, I mention it here because I have been thru situations that seem hopeless only to find out, there are bunches of us out here suffering the same. In both cases, its amazing what we ourselves can find out and share on our own without the aid of doctors. For instance, two years ago and even early on during this session. No one told me, I could go the Emergency Care and get shots of Imitrex...like duh! Didnt find that out till I got here. *G*
Or the idea of dropping the Imitrex from 100 mg to 50 mg to extend your stash of drugs...chuckle. I mean simple stuff that can make all the difference in the world.

Well, anyway...thanks for being here and sharing. That afterall is what life is all about. :)

Take care Paul and GO UCLA!

Title: Re: Hello from Souther Cal
Post by Marshall_D on Sep 16^th, 2002, 7:15am

Welcome D-Elf,

I just found this site also. Everybody is very knowledgable...Like most posters have already said: First-Get to your Doctor ask for Imitrex Injection & O2, and while you're there a referral to a Neurologist. I personally can't take Imitrex, but when I could, it worked wonders & O2 never did a lick for me, but it has helped a great deal of Clusterheads. If Imitrex, O2, and a couple of visits to the neurologist haven't helped then I would go for the Pain-Killers. Currently, this is my only help I can get for these Clusters. If doctor is willing they should be taken on a fixed schedule and not as needed, since we all know it would be too late for Pain-Killers during the Cluster Attack. Just be careful, cause they can be dependancy causing. What I do, is when I feel the Cluster coming to an end, I begin to take less and less until I stop at about the same time the Cluster Cycle stops.

If nothing else works, then I would go to the less true & tried approaches, like accupuncture.

But I'm not an expert!!! This is just how my treatment has went, and so far it has been acceptable. You have to do what works for you since everybody responds differently to treatment. Just don't let the doctors try something that you know has not worked in the past. Because they are very good at doing that...

Good Luck to you, and hoping your cycles become less and less frequent...

Title: Re: Hello from Souther Cal
Post by Darkelf on Sep 16^th, 2002, 7:42am

Hi Marshall,
Thanks for the reply. Ditto on the meds and doctors. Thats how I got put off the first time...boy was that fiasco!
doc appt--2wks
tests requiring appt--1wk
follow-up with doc--1 wk
new tests order--1wkk
etc etc etc.
and all the while....chuckle.

I have a very fine doctor GP and he has done his homework. In fact the neurologist is next on the list of discussion for the 26th this month. I intend to give the address for this site and OUCH on our next visit, if he doesnt already have it.

I take Imitrex in a tablet form and it has a been a God sent.

Thanks for the welcome and in the info.

Title: Re: Hello from Souther Cal
Post by echo on Sep 16^th, 2002, 8:25am

Welcome to clusterville john. Sorry you needed to surf for a beach such as this.
Never tried acupuncture either.

Title: Re: Hello from Souther Cal
Post by NancyMcFree on Sep 16^th, 2002, 8:33am

Welcome to the board. The oxygen is much cheaper than the Imitrex and works pretty well. Also the Imitrex shots work way better/faster than the pills or nasal spray. Look for an old post labeled "Insurance" ... in this post there was a web address for the company that makes Imitrex. They will give you an advocate to work with your insurance company to get the amount you need. Good luck.

Title: Re: Hello from Souther Cal
Post by Darkelf on Sep 16^th, 2002, 8:54am

Thanks Echo for the welcome. Nice sunny beach you have here, so where are the scantly clad cuties....chuckle. Yeah, I hear ya. 8)

Its idea I have been toying with. My ins doesnt cover accupuncture at all....so I dont know. Will most definitely post up here, if I decide to pursue it.

Title: Re: Hello from Souther Cal
Post by echo on Sep 16^th, 2002, 8:57am

Does you insurance cover chropractic svcs? Some chrio's practice acupuncture as well.

Title: Re: Hello from Souther Cal
Post by Darkelf on Sep 16^th, 2002, 8:58am

Hi Nancy,
Thanks bunches for the info. We checked with our Ins co. and they dont even want to look at shots and nasal Imitrex. I would like nothing better than to make them eat this one. ;D

Thanks bunches!

Title: Re: Hello from Souther Cal
Post by Darkelf on Sep 16^th, 2002, 9:18am

Echo,
First off I had to laugh at your quote about the shovel in the face....LOL! Most definitely concurr with that one. ;D

Yes the Ins does cover Chiro... services and that is a hell of idea...thanks bunches!!!!!

Title: Re: Hello from Souther Cal
Post by Slammy on Sep 16^th, 2002, 11:59am

I have tried accupuncture as well as accupressure and they did not affect the Beast whatsoever.....but, as you can see on here... Stuff works differently on other people..... btw.... I'm Southern Cal born and bred, as well as a UCLA alum..... Go Bruins! :D

Slammy 8)

Title: Re: Hello from Souther Cal
Post by Drk^Angel on Sep 16^th, 2002, 12:19pm

Welcome to the board! Sorry that the beast is smashing your cranium into oblivion with a white hot iron skillet. Welcome to the family!

PFDAN............................. Drk^Angel

Title: Re: Hello from Souther Cal
Post by Darkelf on Sep 16^th, 2002, 12:24pm

Hi Slammy,
Hey, mucho gras for the info. Its possible it might work for me. I am just having a hard time believing that we know the why and part of the how and can't seem to get the problem solved. We know its constriction of a blood vessel, since the pain doesnt move around all the much or at all, we know its tied to our individual bio clock... One would think we could control these darn things...(sigh)

Yeah I know, sounds good. :)

I just came off of the second one today....grrrrr! So, I am a little....peeved....hahahahah!

Thanks Slammy.

BTW the weather looks pretty over you way. Nice blue sky and about 80 degrees here in the desert. :)

Title: Re: Hello from Souther Cal
Post by Darkelf on Sep 16^th, 2002, 12:29pm

Hey DRK^angel,
ROFLMAO! God, if you only knew how I much I needed that right now. I am still laughin....thanks, my friend. That was medicine for the soul! I owe ya one! ;)