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(Message started by: shifteh on Dec 20^th, 2003, 4:15pm)

Title: Unsure
Post by shifteh on Dec 20^th, 2003, 4:15pm

A few weeks ago I went to my doctor for the 3rd time in a month. The pain in my head was still there, and getting worse. After seeing me that day, he told me I might have "cluster headaches." When I asked what they were, he explained."

I am not totally convinced. I don't think they <i>aren't</i> CH's, I am just wary of going about things the wrong way.

I have had headaches all my life. I used to get them once a week or so. Sometimes almost daily. I went to a neurologist, and he couldn't figure out what was wrong. He said the highest percentage headache I had symptoms for were "Migraine" headaches. It was less than 40%.

Until now, my headaches have been fairly short, and not incapacitating. Recently, I had to be helped to the bathroom by my girlfriend.

I am unsure of what to do. I am going to a Neurologist who specializes in headaches, I am taking a pill called Amitriptyline that makes them less often, but not less severe. They do, however, leave me groggy almost the entire day.

I have lost my job because of this. It was a seasonal job, but it was also my only job in over a year. I had costochondritis for a year, and this was my first job since.

Basically, I want to know if I do have CH's or not. Any help you can give would be great.

cheers,

Title: Re: Unsure
Post by Belle on Dec 20^th, 2003, 4:32pm

Shifteh,

I went through sort of the same thing. Mine started out lasting roughly 2 weeks when I was 13. Now 27 they can last up to 6 months.

I was sent to many neutologist, dentist and even an alergist, trying to find out what was causing them.

Now diagnosed as a CHer, I take 5 x 25 mg of the Amitriptyline every night for prevention, when they come back anyways I start on Verapamil for a month or so at 2 a day. I find that this cuts them down to a couple of weeks.

You just have to keep at those doctors. You'll find that a lot of them are no help but when you finally find the right one who will listen hoepfully they will do anything to help you. If not just keep reading here. There's lots of great info and understanding people. We've all gone through the "I'm not sure what's wrong with me" time.

Hope all goes well and if you need to chat we're here.

Belle
;)

Title: Re: Unsure
Post by shifteh on Dec 20^th, 2003, 4:38pm

Thanks a lot for replying :)

One of the problems for me is that the most commonly mentioned treatment involves needles.

I am needlephobic, but it isn't an "I'm scared, they hurt" kind of fear. I actually pass out. If I see people getting needles, even on T.V., I get sympathy pains in a big way.

The other problem I have is that I won't be able to hold down a job. I am only 21, and no job I get is going to understand that sometimes I just CAN'T come in.

I'm not looking for sympathy or pats on the back, I would just like to know how people get around this problem.

Title: Re: Unsure
Post by Mac on Dec 20^th, 2003, 4:43pm

Hi shifteh. Take the cluster quiz right there on the menu to help you narrow it down a bit - in your own mind at least. You might have something more serious you might not.Clusters are the worst pain you can have but they don't kill you. Read all the info available on this site.You'll find lot's of support here as well. Nice to meet you by the way, to bad it had to be here.

Title: Re: Unsure
Post by BlueMeanie on Dec 20^th, 2003, 4:49pm

Shifteh,

I'm not convinced that you're headaches are clusters. When you get in a CH cycle, you don't just get a couple of headaches. Once the 1st one hits you, expect that you will get anywhere from 2-7 attacks daily.

Believe me, if you get a KIP 10 attack you would know it. You need to describe the feeling, strength of the attack, how long it last, and how often daily you get them. Do they wake you up from a sound sleep ?

All that said, I would continue to seek advise from your Neuro.

As far as the Imitrex shot goes, if you use the auto injector, you don't even see the needle. All you do set the tube on your leg and push the botton. It doesn't hurt and it's easy.

Good luck with your headaches. I'm sending vibes in hopes it's nothing bad and for sure hoping for your sake it's not clusters.

Title: Re: Unsure
Post by shifteh on Dec 20^th, 2003, 4:50pm

I did take that quiz, actually, however I am borderline. On both top and bottom parts of the quiz.

I myself am fairly certain that I have CH's. I'm not 100%, but from what I've read it sounds pretty much bang on.

How do I explain this to my parents, or my friends? I don't live with them or anything, but my mother has always thought I used my headaches for attention.

If anyone has seen the PSA for schizophrenia, that's how my conversations usually go regarding this problem.

Bluemeanie:

I would say in the last two weeks I've had one 9, four 8's, and maybe ten-fifteen 5-7's.

Until this point I have had very few 9's in my life, maybe One a year. I started getting headaches when I was 7, and I still remember my first one.

Title: Re: Unsure
Post by cathy on Dec 20^th, 2003, 4:53pm

on 12/20/03 at 16:43:56, Mac wrote:

Hi shifteh. Take the cluster quiz right there on the menu

You might have something more serious.... yep he's right...but definatley not something more painful!!

I think it'd help shifteh if you could elaborate a bit on the type of pain your experiencing....

As for the needlephobia....well I don't think a little prick ever hurt anyone... ;;D

Cathy

Title: Re: Unsure
Post by Belle on Dec 20^th, 2003, 4:54pm

I understand the needle issue. I was the same way when I was younger. I even passed out when I saw my sister get her ears pierced. I've now had so many that its not a problem. If your doctor says that needles is the only option maybe get a second opinion or do some research on that drug and see if there is a substitute. There are new drugs coming out all the time and you'll find that doctors don't know everything.

What is the shot of anyway?

Let me know and maybe I can do some research for you. Being a fellow Canadian we will have pretty much the same things available to both of us.

As for the job, unfortunately all you can do is hope that meds and or treatments will help lower your sick time. I myself lost my last job because of time off. I am hoping to find work that I can do out of my home, I tried data entry for a while but then they moved, but this option isnt there for most people. My sister told me that I should look in to disability but I havent hit there yet.

I'll keep my fingers crossed for ya and let me know about the shots.

Belle
;)

Title: Re: Unsure
Post by shifteh on Dec 20^th, 2003, 5:05pm

The way I usually describe the pain is a thumbscrew on my left temple. It basically feels like a vise is crushing my head.

Other times it is pretty much the "hot poker in the left eye."

I am trying not to read too many descriptions of CH's before I go to the Neuro, just so I don't convince myself I DO have them before I can be sure.

What did sway me to thinking they are CH's was actually the left-eye 'tick.' I've had that for years, and I never figured out where I got it. I guess I know now.

Read on if you want to hear my attacks described in detail:

It starts as a sharp pain in my left temple or eye. It quickly changes to a pain in the right temple, although less severe. Then it add's an awful spike-like pain to the top of my head. Then my nose hurts, and my eye follows suit. After that it really hurts so much I don't notice where. The most effective pill so far has been the Amitriptyline (hey didn't need to check the spelling this time), but it doesn't help the severe...ness. Only the frequency.

Some days I have a constant pain, but it is not as severe.

Two things I forgot to add:

Needles: I am actually not afraid of them. I don't feel pain when I get needles, but I believe I create too much adrenaline, and then crash after I get said needle. When my GF talks to me whilst I receive a needle (blood tests - 7 fucking vials) I do not pass out.

Causes of pain: Touching my head at ALL makes the pain worse. Often a slight tap on the top of my head will send a sparkle of pain down my entire skull.

Title: Re: Unsure
Post by Mac on Dec 20^th, 2003, 6:03pm

Hmmmm...You say when you touch the top of your head it shoots a pain through you. I can smash my head through a wall and all I feel is the beast trying to claw it's way out. Sensitivity to touch suggests something different. Clusterheadaches tend to be one sided where as you describe it as shifting from the right to left during the same episode. [smiley=huh.gif]

Title: Re: Unsure
Post by shifteh on Dec 20^th, 2003, 6:09pm

Well, the vast majority of pain is in the left side, but I do hurt in other places. Only the top of my head is sensitive - the forehead, back, and upper sides are not.

Title: Re: Unsure
Post by Charlie on Dec 20^th, 2003, 7:16pm

Try this:

Cluster attacks will wake you out of a sound sleep. It's one of my favorite touchstones.

If you can sit still during an attack, they almost certainly aren't clusters. Clusterheads at least rock or twist around. It's too painful to lie back. No one relaxes during this horror.

I'd be very happy to hear that you don't have CH.

Charlie

Title: Re: Unsure
Post by Prense on Dec 20^th, 2003, 7:41pm

Welcome aboard!

It is an absolute fact that CH varies from person to person. Many of the symptoms you describe do not sound typical to me. I have never experienced any sensitivity as you describe. Charlie's post is dead on. Although not everyone experiences the wrath of the nocturnal attack, the sitting/lying still part is right on.

For me, the pain is at a very precise location during an attack...total pain in my eye.

Some additional things to consider...are you getting a runny eye and/or runny or congested nostril during an attack? Those too can be signs of CH.

As for the needle issues...I am fairly certain that after 3-4 injections of trex (assuming it works), you will never have issues with needles again. The majority of abortives for CH are not delivered via needles anyway. Remember, we cannot diagnose you...just give you opinions based on what you tell us.

I would suggest a 2nd opinion if you are in doubt.

Either way, hang around and let us know how it goes.

Regards!
Chris

Title: Re: Unsure
Post by shifteh on Dec 20^th, 2003, 7:58pm

I occasionally get a runny eye, but that is usually due to me scrunching my eyes shut because of the pain. I DO, however, get a runny or 'stuffed' nose.

I'll let you all know how my Neurologists apointment goes on monday.

EDIT::

I've had this 'headache' for almost a month now. My ears have started to feel like they are burning from the inside, and my left eye is twitching again.

Title: Re: Unsure
Post by shifteh on Dec 21^st, 2003, 1:17am

Update::

I just had a fairly bad attack, and it reminded me -- when I get really bad, sharp pains on the left of my head, my left arm either hurts a tonne, or is all pins and needles.

Has anyone else had this?

Title: Re: Unsure
Post by jonny on Dec 21^st, 2003, 3:29am

on 12/21/03 at 01:17:18, shifteh wrote:

Nope

......................................jonny

Title: Re: Unsure
Post by Mac on Dec 21^st, 2003, 5:42am

I'll second that nope.

Title: Re: Unsure
Post by BlueMeanie on Dec 21^st, 2003, 5:46am

NO. Sounds like a pinched nerve or something. Have you had a neck problem ?

Title: Re: Unsure
Post by Patrick_A on Dec 21^st, 2003, 7:36am

Ok, I dont know if you do or dont have CH's. But someone touched on this earlier and i wanted to repeat it. The beast doesnt feel shit. I have beaten my head up against the wall trying to dislodge it from the inside of my head. It actually feels like it is growing inside my head and it has nowhere to go , It expands till i am in absolute agony, Only when it quits expanding, does the pain start subsiding.

I dont know anything about the drug you are taking. I just know what works for me as far as preventative and abortive goes. Prednisone and Verapamil did well for my last cycle in preventing it. Imitrex is the drug of choice for most in aborting it.

Ch has so many faces that i wouldnt sit here and say that you dont have them. You definitly have some common symptoms. The one that would stand out for 90%+ of all Clusterheads is....Do they wake you from a sound sleep? Mine always start this way, The very 1st CH in cycle wakes me! After i get into the meat of my cycle, that is the 1st CH of my day, after that i may get a few more that same day.

Good luck, I hope this helps ya some. If ya find out ur definitly CH. Stay put, hang around. Learn all ya can. I got my last cycle stopped because someone here mentioned their preventative of choice and i got my Neuro to prescribe it to me.

Patrick :)