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        New Message Board Archives >> Medications, Treatments, Therapies 2002 >> need advice
        
(Message started by: dallasny on Oct 14^th, 2002, 5:05pm)

Title: need advice
Post by dallasny on Oct 14^th, 2002, 5:05pm

Hello everyone, hope you can help. I am starting :( my 4th year of clusters. use to get them in spring, they skipped me last year and came last fall (worst batch i have had, lasted sept-april) Dr had me on 20mg nasals but they didnt work last fall, so he started me on injections. i have read advice on here and tried taking half a shot at a time and it started working. seeing as i get 6-8 a day that helped immensely. a friend told me about fever few and i have been taking that and at first it helped, headaches would be so mild and leave within 5 minutes, TILL TODAY!!!!! i have had three today one yesterday, today's were 11 am, 2pm, and 5pm...the 5pm one didnt leave nearly as fast with the injection as they usually do. dr has tried every pill known to man on me, vicadin, depakote, verapamil, verelan pm, topomax, just to name a few. i ate chili last night and have found when in a cycle, garlic, garlic powder and choclate really bring them on bad. so i am hoping they will be gone when the garlic is out of my system. crossing my fingers as we speak. by the way, one day last fall i already had my maximum shots for the day and got a HA at like 2am, so i hopped on puter to get my mind off it and went to brain.com to look for answers. well i took an I Q test and was shocked at the results. during the headache i scored 151...might go take it when i dont have one and see how bad i do..lol good luck and take care everyone....:)

dallas

Title: Re: need advice
Post by domm on Oct 14^th, 2002, 5:36pm

dallas - sorry you are getting beat up, but you've obviously found the right place for CH help. I'm sure you've already clicked your way through this site and the OUCH site (buttons on the left). There is tons of great medical info available on both sites. Read, read, read. I'm sure there are a few meds you haven't tried. You didn't mention Oxygen. Its one of the best abortives (works for most) without any side effects.
Good luck in finding the right set of meds and welcome to the board
domm

Title: Re: need advice
Post by Mark C on Oct 15^th, 2002, 12:19pm

Welcome Dallas,
Sorry you are gettin your ass kicked, your in the right place. Hang in there and let us know how you are doing.
Mark

Title: Re: need advice
Post by Slammy on Oct 15^th, 2002, 1:33pm

on 10/14/02 at 17:05:59, dallasny wrote:

Hello everyone, hope you can help. ..
.. by the way, one day last fall i already had my maximum shots for the day and got a HA at like 2am, so i hopped on puter to get my mind off it and went to brain.com to look for answers. well i took an I Q test and was shocked at the results. during the headache i scored 151...might go take it when i dont have one and see how bad i do..lol good luck and take care everyone....:)

dallas

Ok..... I can't let this go...You first start off asking for help.... but you don't elaborate in your post on what help you are looking for.

Then you are telling us that, WHILE HAVING AN ATTACK, you actually took an IQ test? ( why in earth would you take an IQ test at 2AM, let alone during an attack!) and scored 151?

Sounds like you don't need any help, you have all the answers... Hell, soring a 151 during an attack at 2am... you should be able to figure out a cure to clusters by 4am!

Slammy 8)

Title: Re: need advice
Post by dallasny on Oct 15^th, 2002, 3:28pm

thx domm and mark, as for the oxygen my nurologist seems leary for some reason. my primary wants to go exactly by what he says too, so he wont perscribe it. i have been thru like 12 different pills, my doctor is always trying different things from steroids to seizure meds. i have found frozen veggies on head works sometimes. as for slammy, i was just looking for some ideas (like the veggies) trust me i dont like being up on puter at 2 am with my eye pouring out water and nose running while my head throbs. last cycle just lasted from sept, till april, so during an attack i would do anything(even take an IQ test) if it would take my mind of the pain just a little.

dallas
p.s. even with the 151 i still mistyped chocolate.

Title: Re: need advice
Post by kim on Oct 15^th, 2002, 3:31pm

if ya can feed, diaper and put babe back in crib - ya can type on the damn puter. It's all relative.

Ceasar ;D Good to end on a "Hi" note ;DLOL

Title: Re: need advice
Post by Margi on Oct 15^th, 2002, 3:43pm

I gotta side with Slammy on this one. OMG...I just said that in public, right? :o

I'm trying to picture my hubby having the patience and/or ability to sit through an IQ test in front of a computer screen during a cluster attack. Nope, can't quite get that mental image to form properly. Something about teaching the computer how to fly keeps interrupting my vision.

Dallas, have you taken the cluster quiz? The foods you mention, except for the chocolate, usually help abort attacks. Especially the spices found in chili. Garlic is a natural infection fighter - the allicin in it is what helps to clear up sinus congestion and lower blood pressure. Was there any MSG in the chili? Because THAT would trigger an attack.

I'm not trying to chase you away, Dallas, honestly. There are just some big differences in what you're describing here to what most cluster folks go thru. Really just trying to help.

Title: Re: need advice
Post by Bob P on Oct 15^th, 2002, 4:00pm

In my book, anyone who would sit down at the pooter during an attack has an IQ of 1.51!!!

Title: Re: need advice
Post by kim on Oct 15^th, 2002, 4:14pm

Okay ;D

But..............(boob) think: Oh Miss Scaahlett! :o (sobs ensue) I don no nuttin bout birthin no babies :o (and off she goes in a fit a sumpin)
what I'm SAYYYYYYYin! All you testy stik to its ;D is that in a pinch when feel have no choice, ya CAN do LOTS a STUFF ya might udderwise think ya CAN'T ;)

Yeah, the diapers were a bit crooked and baby and mommy were not exactly hummin a smiley toon, but the job CAN get done. Okay. I worked with lawyers for a long time (i know, that's a real SOBBER ;D) anyway, lots of times i had an attack while working. INCREDIBLE right? IMPOSSIBLE, right? WRONG. I had to transcribe a personal arbitration statement in the presence of the President of National Cash Register (labor dispute) - anyway, my head was having a fourth a july pre-screenin and that guy NEVER EVEN KNEW IT. Amazing whatchacan do when ya think there's no choice.....I know it's hard to fathom, but it can be done.

Pea brain. ;)

You suffer over and over for years and years, ya get TOUGH. No choice guys. What ya gonna do? Say , Oh I can't take care of the baby, or No I can't work, etc., etc. YES YOU FUCKING CAN!

However: footnote: there are some patched up holes in my bedroom wall where the phone, the message machine, the vcr and various other objects landed during my frustration and vulnerability with the beast. It's up and it's down. Sumptimes we are strong and sumptimes we are - well you know..... ::)

Title: Re: need advice
Post by Ted on Oct 15^th, 2002, 4:21pm

And when I get hit quickly while driving I don't let go of the wheel and crash into a tree. I don't think taking an online IQ test/game is one of those "hafta" situations though.

Title: Re: need advice
Post by kim on Oct 15^th, 2002, 4:28pm

Like I said, it's all relative. Maybe what for you is trivial is for someone else essential.

He'll figur it out, i bet. ;)

Title: Re: need advice
Post by dallasny on Oct 15^th, 2002, 8:19pm

very sorry i posted now, oh and bob i am not even low enough to comment on your opinion.

dallas

Title: Re: need advice
Post by Marc on Oct 15^th, 2002, 10:50pm

I realize that another person's Kip 9 may be different than mine. I've always felt that my tolerance to pain was high. But maybe I'm just not as tough as I thought because doing even "simple" things during a CH is quite simply impossible.

I get a few minutes warning while it ramps up the scale -then the pain takes over leaving room for nothing else......... until it leaves.

If another person feels the same pain that I do, and can still even pretend to function, I'm truly impressed. Not being sarcastic, I just can't fathom it.

But then again, that's just me ;D

Marc

Title: Re: need advice
Post by suzy617 on Oct 16^th, 2002, 6:03am

I, also cannot imagine being able to do ANYTHING except rock, and pace when I get an attack. It is a chore to even speak to someone. I've tried to look into the mirror to see what I look like at this time and I cant even open my right eye or focus very well with the other. Luckily I have never had an attack while driving, dont know what I'd do then.

Title: Re: need advice
Post by J. Marshall on Oct 16^th, 2002, 11:20am

Please help me understand why this fellow Cluster sufferer was flamed. At worst, he's just braggin' about his I.Q. At best, he had a Kip 1 thru 5 and was able to remain somewhat composed enough to take an I.Q. test last fall, in which he scored a 151.

You now have a place to "vent" when you wake up at 3 a.m. with a headache, the oxygen tank is empty, and you're out of Imitrex!

"Above is a quote from the Home Page of this site." Obviously, you need to use a computer to do this. Just like this person did.

I just hope a fellow Cluster sufferer did not leave our fold.

Title: Re: need advice
Post by Slammy on Oct 16^th, 2002, 12:14pm

Hmmmm why was he flamed........ He wasn't flamed that bad... but I'll offer my opinion...

Clusters are the worst headache in regards to pain, known to man. They have driven many of us to our knees.. banging our heads on the wall.. walking around ranting, squeezing our brain....kneeling on the floor with our heads on the ground rocking back and forth... so on and so on...

We all know this pain..at least clusterheads and their supporters.. this is what binds us all......

So when someone posts: " hey! I was in this middle of a cluster attack in the middle of the night, and I just happened to get on the computer and take an IQ test and score 151!".....it maybe a bit hard for some of us to fathom this going on to someone with a "true" cluster attack. I could be wrong on this, but this is my take on it. ;D

Slammy 8)

Title: Re: need advice
Post by oringkid on Oct 16^th, 2002, 12:16pm

Don't worry DallasNY. You are not alone. I will play word games on the computer when under attack until I hit about a kip 8, then I rock, moan, do the ice etc. I use distraction from the pain as much as I can.

I, like Kim, have learned that you CAN function if you have to, and for me, staying as calm as possible, distracting myself as much as I can, doing my little rituals, gets me through it.

Is my pain tolerance that much higher than others? I don't know, I have never felt anyone elses pain. I only know that the CH pain is worse than any other pain I have ever experienced (including childbirth, which wasn't all that bad to me) and I have learned to deal with it the best I can.

Sherry

Title: Re: need advice
Post by J. Marshall on Oct 16^th, 2002, 12:28pm

Slammy,

Point taken.

I know when I'm at a Kip 6 or above, I sit and rock until it ends. I couldn't do much of anything. But, I'm on this site often when I have shadows or a Cluster I can deal with. If anything just to get it off my chest. Now, I'm not gonna do an I.Q. test and tell the entire Cluster World what my score was, but I will use the computer once in a while.

Oh well, just askin', let's put this baby to bed.

Jim M.

Title: Re: need advice
Post by Slammy on Oct 16^th, 2002, 12:38pm

Jim,

It's not a bad question to ask. All I know is that I suffer only one type of cluster attack. PAIN!.... If I can't abort it in the first couple of minutes during the onslaught.. I'm fucked.... it goes to full bore in 5 minutes or so... I only have time to get into my "suffering" location and hunker down. I don't have kip 1 or 2 or 3's.... maybe in the first 30 seconds... but then they take off. If you take a poll, I think you would find that this is the more common type of attack, hence the aprehension.

He shouldn't take the flames personal... but at least understand why they were hurled.. That, and what was the purpose of the post and why say that?

Slammy 8)

Title: Re: need advice
Post by dallasny on Oct 16^th, 2002, 3:42pm

ok someone explain the kip scale to me? i know most of my clusters are of the pacing and rocking kind. but i myself have made up my mind i am NOt going to let them run my life. if i get one at work i keep trying to work till its gone, like i said anything but sit and think about the pain. is it mind over matter for some? maybe, because when someone tries to tickle me i can block it out if i know its coming, otherwise i am done for, i am very ticklish. maybe thats what i do. but yes, the clusters are very bad, and when they happen infront of people its worse. now i know myself on any other day i wouldnt have scored 151, it was just a question that did the cluster "wake up" other parts of a sleeping brain?

Title: Re: need advice
Post by dallasny on Oct 16^th, 2002, 3:56pm

ok i read the kip scale, mine are usually a 8 or 9. i pretty much always have a shadow during my cycles, unless its the first 45 min - 1 hour after an injection. i sleep when i can, after work a quick nap, nighttime naps..etc.

dallas

Title: Re: need advice
Post by dallasny on Oct 16^th, 2002, 4:05pm

ok done on this topic, but i took the test again only got a 134

dallas

bye everyone

Title: Re: need advice
Post by Slammy on Oct 16^th, 2002, 4:18pm

on 10/16/02 at 16:05:57, dallasny wrote:

ok done on this topic, but i took the test again only got a 134

dallas

bye everyone

OMG! You're getting dumber! Quick! Someone tickle him before he sounds like Cat! ;D

Slammy 8)

Title: Re: need advice
Post by Ueli on Oct 16^th, 2002, 6:06pm

We must ask Kip to make a revision of his scale:

Current version:
Kip #8: Time to scream, yell, curse, head bang, rock, whatever work's
Kip #9: The "Why me?" syndorme starts to set in
Kip #10: Major pain, screaming, head banging, ER trip. Depressed. Suicidal.

I propose the following changes:
Kip #8: Time to scream, yell, curse, head banging the keyboard to take an IQ test, rock, whatever work's
Kip #9: The "Why me that is blessed with an IQ of 1.51?" syndorme starts to set in
Kip #10: Recognizing that "Some are more equal than the rest, who are a Major pain in the ass"

To BobP: Someone with an IQ of 1.51 doesn't bother when and where a decimal point is placed.

Ueli ;D

Title: Re: need advice
Post by Mark C on Oct 16^th, 2002, 9:40pm

Alright children, play nice.
It took all of you some time to figure out how to post the "right" way. Hell I am still half scared most of the time of gettin' my head bit off (what a relief that would be).
We are all different.
Are we here to help or what?
Anybody remember "clicks" in school? Get my drift?
Dallasny dont go anywhere.
I done.
I still love you guys. ;D
Mark

Title: Re: need advice
Post by visegrip on Oct 16^th, 2002, 11:29pm

Hi Dallas,

I happen to live near Dallas, is that where you are posting from?

Anyway, here's my advice. If your doctor's are "leary"
of prescribing Oxygen to you then please, go to another doctor.

Don't tell him or her anything about your previous experiences with the doctors you are now using.

Tell him or her that you are experienceing what you are pretty certain are cluster headaches, and you would like to try a prescription for some O2. I think most level headed general practitioners would be happy to oblige.

Try it for awhile and if it works then you have an ally.

It's relatively safe, free of side effects and inexpensive.

I keep a couple of E tanks on hand. During an episode, one of them is always within a stone's throw.

Stay well, and don't let anybody in this forum tell you what you have or don't have. Most of them aren't doctors, and even if they were, they wouldn't diagnose you over the web. By the way, "medical" oxygen is expensive. I get mine from welding supply houses. It's the same stuff, and it requires no special adaptor to hook up to a medical regulator. Good luck and God speed.

Title: Re: need advice
Post by kim on Oct 17^th, 2002, 6:59am

visegrip,

good advice. dallasny, thinkin of ya. Hope it gets betta soon.

lone ranger ;)

Title: Re: need advice
Post by dallasny on Oct 17^th, 2002, 3:10pm

thx for the o2 advice, i do want to switch nurologists, but mine just happens to work out of the same office as dr mann. which he is supposed to be one of the top dr's for cluster headaches. his name was listed on one of these sites. might have been headache.com or something. but i will give the o2 a try. by the way i am in new york, weather just drastically changed, might have triggered this round.

thanks again.

dallas

Title: Re: need advice
Post by kim on Oct 17^th, 2002, 7:09pm

where in NY? Anywhere near Manhattan? Try Dr. Derek Randall (he takes most insurance). He is a smart man who will listen and work with you. Last visit I bombed him with info from here ;DHe was very receptive. he looks kinda like Einstein ;D :o

dallasny, i am in the long island area and have had clusters for 25 years. If you are nearby or need an ear, please feel free to e-mail me @kimskitchen529@aol.com. I promise I'll help ya the best I know how.

Kim :)

Title: Re: need advice
Post by kim on Oct 19^th, 2002, 12:37pm

A simple answer is to a simple query. To begin with all you need do is ask where on KIP this peson IS or WAS. Why this should be such a pain in the ass I don't know. Must be geographical.....

C'MON! Already..... ;D

the hemorroid.