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        New Message Board Archives >> 2003 Posts >> Another New Guy
        
(Message started by: dellp on May 27^th, 2003, 9:46am)

Title: Another New Guy
Post by dellp on May 27^th, 2003, 9:46am

Hello fellow Clusterheads.
I’ve got to say that just the thought of this site even existing just blows me away! And you people, all of you are incredible ! Thank you for being here.

My name is Dell; I am 52 years young, a retired chiropractor and have suffered since I was 28. My father had CH from age 25 to 50 and I never had an inkling as to what he was going thru. We lived in Baltimore, Maryland and in the mid ‘60’s he did the whole drug route unsuccessfully. He went to see a headache specialist in Florida and wound up donating blood twice a month because the doctor said he might have too much blood in his system. Of course, this did not help at all. But he is another story.

I will never forget my first episode. I was out on a blind date and thought I had been smiling too much - my cheek muscles were just freaking out and going into spasm or something. Pretty mild as things go and of course it didn’t take long for things to escalate. (Just for the record, the headaches have lasted a hell of a lot longer than that relationship did!) My MD said sinus problems even though there was no evidence of trouble, and because of my father’s lack of success dealing with doctors, I gave up on them before going the whole drug route.

The headaches seem to start with either a sharp tingling below the eye or more commonly a tightening of the neck muscles just below the skull- all on the right side. The nostril starts to clog and run at the same time and then a red hot poker gets stuck in my eye and keeps getting hotter till it feels white hot. The eye tears and feels swollen shut even though there is no swelling; light and noise are magnified a thousand times. I have tried walking hard and fast, and I have tried pacing but the best result is just a postponement of the inevitable so why even bother - let’s just get this thing over with already. I have literally hit my head against the wall until the neighbors complained; I want to scream but I’m not sure I could handle the noise so I just whimper, ask ‘why me?’ and plead for mercy.

My dance begins at the shadows appear; I grab a full glass of water and the box of kleenex and set my place in the dining room. Until the pain begins, I wander around the apartment, puttering around, waiting in motion for the hammer to drop. If and when it comes, and it usually does, I sit with my elbows on the table and lean forward with my head in my hands. I feel dehydrated so I drink water. As the pain rapidly worsens I pull my hair (thankfully I have plenty,) and mumble thru the tears. I blow my nose and just drop used tissues on the floor. Sometimes it only gets to a grade 5 or 6, other times a 9 or 10. I might get up and stagger around a bit, bumping into walls, maybe ‘resting’ there for a minute or so. Afterwards I am totally exhaused and drained and need sleep bad. As I am sure you all know, that is next to impossible because lying down only brings it back.

While I am in the midst of a cluster, as I am now, I prepared a corner in my bedroom with a folded futon and several cushions and pillows so I can sleep in an upright position. After settling in for an hour or so I have to get up to drain my bladder and if another episode isn’t starting (which it usually does 2, 3 or more times,) I retire to bed where more cushions prop me to a 45 degree angle. When they are over for the night I can usually sleep the sleep of the dead but rarely wake rested. If it has been a particularly bad night with 3 or more headaches, I am fairly useless the next day until after lunch.

With all this said, after reading many of the contributions to this site, I have to say that as a clusterhead, I I feel I have been pretty lucky. During my 25 years of headaches I have found Acupuncture (which gives anywhere from 2 to 7 YEARS of relief) and tryptophan (which would give 100% prevention.) Unfortunately, the acupuncture is not available to me at this time, and tryptophan is no longer available. (I will be asking for some help with this one in the other post I am making today.)
Instead of making this post into a book, I am going to continue with another post in the ‘medications, treatments & therapies’ section.

Love you all - even the cynics and wiseasses!
Dell

Title: Re: Another New Guy
Post by Jimi on May 27^th, 2003, 10:12am

Sounds like test book clusters all right. It sounds like you are presently fighting them without meds. If you have read the posts inthe medication sections, then I am sure that you have been noticing 02 as a godsend to most. Get to a doctor and get a prescription of 02 and for triptans. Use the 02 for the ones you have at home and during the night and use the triptans when you are out and about. There is not need to fight these battles without weapons. Welcome aboard.!

Title: Re: Another New Guy
Post by dellp on May 27^th, 2003, 10:41am

Thanks for the info, Jimi.
I will be making that call in just a few minutes. You have probably read my post in 'medications' by now and know I have used O2 before, and I am more than ready to give it another try.

Title: Re: Another New Guy
Post by Donna on May 27^th, 2003, 10:59am

Welcome to Clusterville.

When we find this neighborhood, we have a rush of kindredship (is this a word?). And it never really leaves.

My clusters started in the late 50's and no one even knew the words "cluster headache". They lasted 28 years. They just disappeared in 1986 and I haven't had one since, thank God. Really, must be hardening of the arteries!

My 32 year old son had migraines from 6th grade until he was 17, and then they switched to cluster headaches. We hear more and more of family members sharing this malady.

You will find much help and friendship here. Also a treasure cove of "must read" information. There is no better place to be than with a couple thousand people who share your problem. This board is usually occupied 24 hours per day and you will almost always find someone here ready to help you through tough times.

Title: Re: Another New Guy
Post by dellp on May 27^th, 2003, 11:17am

Hi Donna,
Thanks for the kind words and thanks for being there.

17 years PF and you're still hangin' around - kudos to you.

Some clusterheads say they are in the bowels of the beast while online; if I look at a TV or computer screen while in the middle of an attack I get a lightening bolt thru my head so getting your help when I need it most is out of the question. But I know you are with me and I am more than grateful for that.

Thanks again,
Dell

Title: Re: Another New Guy
Post by Roxy on May 27^th, 2003, 11:37am

Hi Dell, and welcome. Glad you found the place. Here's the link to the new 02 page. If the 02 didn't work for you before, it might have been that you weren't doing it right. It really does have to be done a specific way.

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

I agree that it is impossible to be here for help when you are literally getting hit, but coming to the board between hits can really help you gain the strength to make it through the next round of dancing.

PFDAN,
Tracey

Title: Re: Another New Guy
Post by Callico_Kid on May 27^th, 2003, 12:05pm

Welcome aboard Dell. Glad you found us here. The only reason I am here this time of day is because I'm being hit. Otherwise it would be tonight while I'm fighting the beast instead of sleeping. I too went med free for twentyfive years until recently I went to a Neuro cause my Internist wouldn't prescribe O2. The O2 helps if I get it early. he also gave me a scrip for Lidocaine nasal spray that sometimes gives some relief. it will at least dial it back a couple of notches. This MB helps more than anything else though. For twentyfive years I thought I was alone. Now I have family!

Grab an oar and start rowing. BTW, "cynics and wiseasses"? On THIS board? Who would have thunk it? ;D

jc

Title: Re: Another New Guy
Post by cathy on May 27^th, 2003, 12:20pm

Hi Dellp....Sorry to hear that you've been suffering, but glad you've found us! Nothing to add to the above info...good luck if you give the O2 a second chance.

Wishing you PF times.

Cathy

Title: Re: Another New Guy
Post by catlind on May 27^th, 2003, 12:47pm

Welcome aboard Dell.

Glad you found us, but sorry you had to. Sounds like you have your situation pretty much understood. You will find in these pages, a multitude of information, caring, support and understanding.

If you have any questions at all, feel free to ask. For the questions you don't want to ask, there is the search button that will show you information from the archives.

Grab an oar and help row this boat to a cure :)

Cat

Title: Re: Another New Guy
Post by oringkid on May 27^th, 2003, 1:49pm

Welcome Dell, can't add much to what the others have said above. But wanted to welcome you to the hall of pain.

Cynics and wiseasses LOL

I think it is a miracle that there are people on here that are NOT cynics! If anything could make one cynical, CH is it!

Glad your here
Sherry (one of the cynics...and at times a wiseass ;D)

Title: Another New Guy
Post by ZAIRA on May 27^th, 2003, 3:42pm

Hi Dell and Welcome home... now you are no more alone. ;)

I’m afraid to read that you’re bad.... My suggestion is to try O2, for me it works and sometimes I don’t use Imitrex, talk to your Doctor.

Good Luck,

Zaira :)

Title: Re: Another New Guy
Post by Svenn on May 27^th, 2003, 4:15pm

Welcome to Clusterville Dell.You have the best friends around you now.Take care

Svenn from Norway

Title: Re: Another New Guy
Post by gene on May 27^th, 2003, 5:02pm

hey Dell,
I too just found this site a few days ago. I haven't heard you mention imitrex shots which completely stop the particular attack in less than two minutes for me. Insurance problems and two doses a day are the obvious problems.
Do you get them every year? Mine seem to skip every other year and show up in May. They used to show up in Dec.?
It's amazing to me how everyone describes literally the same exact symptoms. My fear is that at some point the imitrex stops working or that my usual 30 to 45 day cycles morph into chronics.
I'm now single and have recently closed my business/(totally unrelated to the ch} so I feel sometimes that I don't have enough reason to live with these dreadful horrors.
Also curious to me that for 15 years I never had a CH during the night but rather 5 or 6 a day. Then this time I get fewer in the day and have the night attacks. Somehow they seem way worse/ alone and so frustrating and scary.
I'm also 52, Good luck to us both!!!
Gene
Feel free to e-mail me I'd enjoy hearing from you.
By the way since your having one now, heres what i DO
hOT hOT water on a towel, when it cools down more hot on the towel/ then I switch to ice/ then back to the hot towel/ seems to help distract and shorten the horror

Title: Re: Another New Guy
Post by jonny on May 27^th, 2003, 6:49pm

Welcome Dell,

.............................Wiseass ;D

Title: Re: Another New Guy
Post by dellp on May 27^th, 2003, 8:32pm

Hey ! to everybody.
Thanks for the welcome, the info and your presence. It seems a shame we have to meet for this reason but I am an eternal optimist and believe somehow there is a purpose for this, even though I doubt I (we) will ever be able to figure it out in *this* lifetime. Not this one.

jonny -
............................with love :P

Just an update here:
Since I am a relative newcomer to Texas I haven't found a regular doc yet but have an appointment tomorrow for the O2 script. AND
If you haven't read my post on tryptophan in 'medications', I'm in the middle of a "turkey trial" to subdue the beast - it's a l o n g story - the strangest part is, it seems to be working!!! Hardly a shadow so far today but tonight will tell the tale. AND
PLEASE, If you have ever tried or thought about acupuncture, read that post, too.

Gene, welcome aboard. Got a great and supportive group here. My biggest problem is keeping up with all that's happening. I might just have to upgrade to DSL or something.

Thanks again and you will be hearing from me.

PFNAD FOR ALL !

Title: Re: Another New Guy
Post by Mastifflvr28 on May 27^th, 2003, 9:12pm

Welcome to our family Dell,
Roxy lives in Texas and has a great doc, she'll post soon I'm sure.
Good luck with the O2 and take care,
Mast

Title: Re: Another New Guy
Post by Roxy on May 27^th, 2003, 9:35pm

Dell, where in Texas are you? I know a doctor in Houston and another in Dallas. Are you close to either place?

Tracey

Title: Re: Another New Guy
Post by dellp on May 27^th, 2003, 10:11pm

San Antone -
think your guys might have a referral?

Title: Re: Another New Guy
Post by Roxy on May 27^th, 2003, 10:30pm

If you were willing to drive to Houston, it's a 2 1/2 hour drive, my doctor there will refill your trex every five days. Of course, that is if your insurance will cover it that often. I have to drive the same distance to see him in Dallas, but for all that trex.....I'd drive all day.

I'm sure his office could give you a referral though. Just email me if you want all the info. I'll be glad to supply it.

Take care,
Tracey

Title: Re: Another New Guy
Post by Charlie on May 28^th, 2003, 1:04am

Welcome to our madhouse Dellp. I'm all of 56 and another who is pulling 50 rather than pushing it. Your description is terrific and I hope you have some luck with my old neurolgist's little technique. Here it is:

Dr. Wright's Circulatory Technique

This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.

When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.

This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.

This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.

When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.

I wish you the best of luck - Charlie Strand

Title: Re: Another New Guy
Post by OneEyeBlind on May 28^th, 2003, 4:36am

Welcome to Clusterville Delp !!!!!!! Looks like you are already getting some of the help ya might need !!!!!

Title: Re: Another New Guy
Post by dellp on May 28^th, 2003, 7:36am

Hi Charlie,
Thanks for the info. I briefly tried this technique in grad school as an experiment and had some success controlling my heart rate. From my perspective, though, the method is totally mental with only the results being totally physical (pickyune, i suppose, but I can get a little anal about some things sometimes.)

At any rate, I don't know if it's the turkey or just the end of a cycle but I just had another PF night and it feels great. I may be sayin' 'turkey' but I am really talkin' 'tryptophan'. I'd love to hear from anyone that has tried 5-hydroxy-tryptophan and how well it worked.

PFNAD to all
and catch ya' on the flip side
Dell

Title: Re: Another New Guy
Post by TomM on May 28^th, 2003, 10:06am

Dell--
First and foremost--welcome, sort of. Glad you found this place. You have many new found friends here who can help you through anything. Just ask.
Wiseasses??? Like I told a nun once (and only once) in grade school..."better to be a smart ass than a dumb ass, right?" Yeah, she knocked the shit out of me and so did my dad when he got home...
--Card carrying member, CHWiseAsses--
TomM 8)

Title: Re: Another New Guy
Post by katethecelt on May 28^th, 2003, 9:31pm

Hi Dell,
Welcome to the MB. Everyone has given you great advice. I hope your suffering ends soon....now would be good.

Sending good vibes to you,
Kate

Title: Re: Another New Guy
Post by cootie on May 28^th, 2003, 10:51pm

Hi nuther new guy dellp......betcha you have learned alot on here rite.....keep readin....stick around ! Pam that likes ta see newbies happy :)