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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Im new here and I need some help.
        
(Message started by: flavin on Feb 20^th, 2004, 9:47am)

Title: Im new here and I need some help.
Post by flavin on Feb 20^th, 2004, 9:47am

I know this is long but i need to vent.

My name is todd and I am a 29yo male living on the east coast of the US. I have been dealing with severe headaches for almost 20 years now. I first noticed them when i was about 9 and they were very intense for a 9yo to handle. as the years went on i was told that it was sinus problems and was treated for that. at age 17 i noticed that I would get them everyday at the same time and last for about 40 mins. I was in school and almost failed out b/c i would sleep during class to help get rid of them. From age 20 - 27 i would get them in the spring and fall like clockwork and last for about a month or so. This is when my doctor told me about cluster headaches and started me on a treatment for them. For most of my leter 20's I worked inside and office infront of a computer and I thought that was the reason for the pain. Then in the last 2 years I had a job working outside year round and never had an episode. In the last 2 months I have gotten a new job inside an office infront of a computer. I have had 6 episodes since then and This past Tuesday I had to go the the hospital b/c i was breathing heavy and the pain was so unbearable. My symptoms include: Severe pain behind the right eye and nose. Tearing of that eye and some in the nose. I have become very nauseated from them sometimes and vomiting seems to help a little. My mouth starts to salivate and I just can't seem to do anything. I feel bad for my g/f who is helpless when i get them. I find that if i lay down in a dark, cold room and pass out from the pain it helps alot. I was taken 800mg motrin everynight and that seemed to help for awhile but now i think im imune to it. I dont know what to do anymore. I feel so helpless when they come. Im afraid that I will suffer from an anurism(SP) or something and die.

Title: Re: Im new here and I need some help.
Post by Samantha_Smith on Feb 20^th, 2004, 10:27am

Flavin--

You said that when you were 17 you would get ha's everyday at the same time and fall asleep in class to help get rid of them. It is IMPOSSIBLE to fall asleep during a cluster ha but falling asleep is a common symptom of migraines.

Getting ha's in the spring and fall "like clockwork" is very cluster headache-ish.

Recently you said that you have had tearing in your eye and nose which are classic cluster symptoms but vomiting and "laying down in a dark,cold room to pass out from the pain" sounds like migraine. Motrin is ineffective against cluster headaches.

Are you seeing a neurologist? Have you ever tried Imitrex, Zomig, Frova, oxygen, prednisone,veraprimil, etc?

Perhaps you have a "mixed" headache?????

Did you take the "cluster quiz" on this web site which would help you to better determine if you have migraines and/or clusters. For your sake I hope you have migraines (yes, I know they're painful) but they are soooooo much more easier to treat than clusters.

Title: Re: Im new here and I need some help.
Post by aprilbee on Feb 20^th, 2004, 10:38am

Ummmmmmmm, most CH sufferers can't "lay down and pass out from the pain", but just do some reasearch, talk to your doctor, get referred to a neurologist.... mostly read, read, read!

I hope your pain subsides quickly and you get the answers you need ;)

Title: Re: Im new here and I need some help.
Post by flavin on Feb 20^th, 2004, 10:38am

I have tried imtrex for the ha's but it only help a little. the motrin helped for awhile but now seems inaffective for them. I have also tried viox, naproxin, exedrin migraine, and numorus others that i can remember. I am not seeing anyone right now since i just switched jobs and i am waiting for my insurance to kick in. As soon as it does i will be seeking treatment for these. they are so unbareable.

Title: Re: Im new here and I need some help.
Post by flavin on Feb 20^th, 2004, 10:45am

Maybe i was not totaly clear as to what i do to try and ease the pain. I lay down but most of the time I have to sit up b/c if i lay down the pain does get worse at somepoint. I just concentrate on it going away and sometimes i fall asleep while waiting. Maybe i sleep b/c of the motrin or naproxin but the last few I have had i could not sleep at all.

Title: Re: Im new here and I need some help.
Post by Little Deb on Feb 20^th, 2004, 10:53am

I used to fall asleep thinking it got rid of my attacks when I was younger. And I would lay down and hold my head. Now that I think about it...I think I just fell asleep after the pain subsided. I remember having to stop my car many times, and sitting there until I fell asleep and when I woke up, I was fine. It happened alot. I also throw up, in the last few years, but I didn't in the "early days". I don't think I have ever had a migraine. Just sometimes I have had some "migraine" symptoms. Things have changed. Sometimes I can lay down, but I still rock and squirm until I get myself so worked up. Then I get sick and roll around and bang my head and cry. It just depends on the attack, and how at the point I am able to deal with it.

done babbling....Little Deb

Title: Re: Im new here and I need some help.
Post by flavin on Feb 20^th, 2004, 11:03am

on 02/20/04 at 10:53:53, Little Deb wrote:

I think this is what is happening. My body twitches when the pain hits and I find myelf tossing and turning. the more i read the more it sounds like i have CH. It said that it is rare but nausea can occur during attacks, It doesnt happen with all episodes but has happened with a few.

Title: Re: Im new here and I need some help.
Post by Sean_C on Feb 20^th, 2004, 11:48am

Hi Flavin

Quote:

at age 17 i noticed that I would get them everyday at the same time and last for about 40 mins.

Cluster Headaches do this

Quote:

I was in school and almost failed out b/c i would sleep during class to help get rid of them.

You definately could't do this

Quote:

From age 20 - 27 i would get them in the spring and fall like clockwork and last for about a month or so.

This sounds like Episodic Cluster Headache

Quote:

This is when my doctor told me about cluster headaches and started me on a treatment for them.

Let us know what kind of meds he gave you

Quote:

I have had 6 episodes since then and This past Tuesday I had to go the the hospital b/c i was breathing heavy and the pain was so unbearable. My symptoms include: Severe pain behind the right eye and nose. Tearing of that eye and some in the nose.

Sounds like a cluster

Quote:

I have become very nauseated from them sometimes and vomiting seems to help a little.

This Doesn't usually happen, never to me anyway.

Quote:

I find that if i lay down in a dark, cold room and pass out from the pain it helps alot.

This is impossible for any of us, more like jumping, kicking, punching, swearing dance in the dark.

Quote:

I was taken 800mg motrin everynight and that seemed to help for awhile but now i think im imune to it.

Morphine won't work

Quote:

I dont know what to do anymore. I feel so helpless when they come.

The best thing I can suggest flavin is exactly what your doing now, educate yourself and learn as much as possible. You are definately not alone, talk to people, study the links here, rule some stuff out, narrow it down yourself, then talk to your nuero.
I hope you rule out these CH, kinda sounds like Migraine to me, but without question I am no Doc.

Best of Luck, and stick around, grab a paddle and start rowin'

Sean

Quote:

Im afraid that I will suffer from an anurism(SP) or something and die

LMAO me too

Title: Re: Im new here and I need some help.
Post by ave on Feb 20^th, 2004, 2:36pm

Well, there are a lot of anomalous clusters out there.

You have a lot of cluster characteristics and maybe some migraines riding in on clusters...?

Do the cl;uster quiz on the left.
Read everything under the buttonsleft of the board. It is a lot, but noy will you be knowledgeable when you see your doc next.

Need a good headache doc? Go to OUCH (button left!) and check cluster resources in the top bar there.

Start reading and oh, it probably is not an aneurysm - my doc told me years ago I wouldn't have felt a thing!

Title: Re: Im new here and I need some help.
Post by don on Feb 22^nd, 2004, 11:58am

I not only feel naseua but my whole body feels as if I have been poisoned. Just an overall awefull sick feeling.

Title: Re: Im new here and I need some help.
Post by MarkV2 on Feb 22^nd, 2004, 1:23pm

Quote:

Motrin is ineffective against cluster headaches.

Just a quick note. B4 I was diagnosed with CHs, I used to think Motrin worked for me too if I would take a LOT at the onset of a bad hit.

My knees would almost buckle because of all the Motrin I would take - it would take about 30 minutes for this to happen just because of my metabolism. And the headache would stop. Back then I just assumed the Motrin ended the headache. Now l know it doesn't work like that.

What was really happening was, by the time Motrin kicked into my system, the 30-minute cluster headache ended by itself (it didn't care whether or not I took Motrin). :P

duhhh

Title: Re: Im new here and I need some help.
Post by chris on Feb 26^th, 2004, 12:54am

Todd, I have been chronic for seven years and even though most people don't get all of your symptons, I would say there is no doubt about it. Never once have I beat my head up againest anything. I prefer a quiet dark room also. And I immediately want to lay down. And quite often after kickin and rollin around like a damn fool. My body will shut down and I will wake up not realising I had even went out. My doc says your body is in so much pain it just shuts down. If i don't black out then I get a real intense case of the yawns afterward like my body is trying to relax itself back to normal. Try the imitrex inj. Get to a neurologist. Does alcholic beverages trigger them? Some times I get the throwing up feeling but maybe actually ever did once or twice. Good luck Chris

Title: Re: Im new here and I need some help.
Post by flavin on Feb 26^th, 2004, 1:42pm

I dont think i pass out from the pain. I think I just wear myself out from the pain. I have noticed that i fall asleep as they are going away.

Title: Re: Im new here and I need some help.
Post by lauriew on Feb 27^th, 2004, 11:39am

I too am 29 yrs. old and have suffered with CH's since I was 17. I have seen several neurologists and have been diagnosed with CH by everyone yet I too, have experienced nausea. All of my doctors have told me that is not common but it does happen. I think my nausea comes on because of the pain. I get my body so worked up during a headache and I make myself so nervous that it makes me nausea. I have never actually thrown up just feel like I will. The moment I feel one coming on anxiety kicks in because I know that I am about to endure a living hell and with that comes nausea. Overall, I dont think that the nausea is a cluster trait I think it just may be how some of our bodies react to the intense pain and nervousness. Also, I always pass out after a CH because the CH just drains my body of all of its energy. As the pain starts to subside so does my energy. During a CH is a different story, I can not sleep at all. I think this is a very common cluster trait.

As many people here have already said the best thing that you can do for yourself is see a good neuro as soon as your insurance kicks in. Until then, take the cluster quiz and learn as much as you possibly can about cluster headaches, as well as, about migraines. You know your symtoms better than anyone so only you can rule out migraines or clusters. We are all here to help you as you figure things out so ask as many questions as you need to. I'm sure someone here will know the answer or can help you to find the answer.

Best wishes on you search for answers~

Laurie

Title: Re: Im new here and I need some help.
Post by flavin on Feb 27^th, 2004, 12:47pm

Thanks Laura. I have taken the quiz, Im reading alot about it, and will demand a neruo when i go to the drs.

Everyone here is so nice and understanding and i think you have hit it on the head when you said everyone reacts to them differently. I only get sick from then every few and i have noticed that the more severe the pain is the sicker i get. I get all worked up when i get then and I think this is what causes me to get sick. But then there are times when im fine. the one thing that I dont like about everyone telling me is that nausea and Passing out Is not a trait of the CH. But everything i read said that it can happen, its rare but it can happen.
It just goes back to everyone reacts differently to the beast. Just like some meds may work for you but not for someone else. I am going to the Dr and talk about everything that has been going on and what my symptoms are. I hope that we can work on a treatment that will help me in the future.

The one thing I read about this monster that really scares me the most is " This is a life long disorder" When I read that My heart sank. I hope that there is a cure for us sooner then later.

thanks everyone for careing and hopefuly we will not have to live much longer with this beast.