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(Message started by: gravelgirl on Apr 13^th, 2005, 3:51pm)

Title: Do I have cluster headache?
Post by gravelgirl on Apr 13^th, 2005, 3:51pm

I spent 12 hours at the ER yesterday after having a severe headache.

From the beginning:

I'm 20 years old. Female. Brown eyes.

Monday 4/4/05 I had a very normal day. Went to work, hung out with friends afterwards then went "home" to a motel I was staying at. I left the heater on and fell asleep at about 12:00. At 3am I awoke to the most excruciating headache and nasal-ache anyone could ever imagine. I alternated pacing and lying down, screaming, crying, etc. I felt as though if I had a gun I would have easily used it on my head. I grabbed a bottle of Tylenol and took six pills with some water. My nose was pouring, I felt nauseous. I called my mom who said that because I had left the heater on it dried up my sinuses, and that I needed to take a bath to have the steam open up the nasal passage. The headache was only on one side and seemed to stem at my temple and go out from there. It hurt as if someone stuck a hook up one side of my nose into my brain. I went into the bathroom about half an hour from when I had woken up. I started a bath, but then was over come with the sensation to puke. So I puked (a lot) took a bath and went back to bed, crying and still in pain. I was finally able to go back to sleep (one to one and a half hours later from when I had woke up). The next morning my tummy still hurt a little but the headache was gone. I took the day off and stayed in bed anyway. I though I had gotten a 24 hour flu or food poisoning or something. I went about my life with no further problems.

Monday 4/11/05 I had a very normal day. Went to work, hung out with friends afterwards then went "home" to my boyfriends house. Sound familiar? I fell asleep about 1:00am. At 3:30am I awoke to yet another headache as exactly a week before. Same as the week before I paced, lied, cried, screamed, nose pouring… same side of head. Everything the same. I puked again, felt nauseous. Went back to bed, fell asleep finally. Except this time… woke up about 11am and I still had a headache (or got another one). I called my Dr. to try to get an immediate appointment to no luck and so I went to the ER. I was driving my self to the ER and had to pull over to puke again. Go there and after a few hours was admitted. All I wanted to do now was sleep. Headache still there, but not as strong as it had been. They gave me two shots of pain killers and for nauseousness. I was drugged with narcotics and sleep was gooooood. They did a CAT scan and it showed nothing. Then they did a spinal tap… found nothing unusual. 12 hours later I went home feeling fine, but very unsettled not knowing what was wrong. A doctor gave me a 3-page description of cluster headache (as a suggestion of what it MAY be).

The paperwork listed symptoms and feelings very identical to what I was experiencing and other traits I didn’t match. It described cluster headache as the “suicide headache” because it hurts so bad you want to kill yourself, and the “alarm clock headache” because it wakes you up from sleep. I’ve only experienced two (maybe three) of these “attacks” and they’ve been one week apart exactly.

Can anyone tell me if these are the early signs of a lifetime of cluster headaches, or do I have a different problem?

A few other things I may add that may or may not be realted:

I suffered from vertigo about a year and a half ago for a few weeks but not since then.

I've been on the depo birth control shot for 4 years and have not had a period during that time. I quit the birth control in November and started my first period (since I was 16) on 4/1/05 which I still am on (13 days later) although it's been light.

I don't know if these are factors to consider. The doctors are at a loss.

Thanks,
Bristol

Title: Re: Do I have cluster headache?
Post by nani on Apr 13^th, 2005, 4:05pm

Welcome Bristol and sorry you're here. The symptoms you describe sound an awful lot like clusterheadaches. If I'm not mistaken I used the hook in the nose description to a dr once. You need to see a neurologist and get a definitve diagnosis. In the meantime, look around this site and gather as much info as you can. Info is your best weapon. Pay close attention to the oxygen info (link on left). It's a very effective treatment for many of us. There is no cure for CH, but there are treatments. Finding the right one can be tricky, as we don't all respond to the same treatments. Read, read, read....and ask questions and keep us posted. Pain free wishes, nani

Title: Re: Do I have cluster headache?
Post by sandie99 on Apr 13^th, 2005, 4:11pm

Welcome, Bristol... :)

So sorry that you're here. I am glad that you found your way here. You can find lots of info about ch. As nani mentioned, educating yourself is important. So is getting an offícial diagnosis from a neurologist.

Good luck! :)

PFdays,
Sandie

Title: Re: Do I have cluster headache?
Post by gravelgirl on Apr 13^th, 2005, 4:16pm

One thing I haven't read or heard yet is about the nauseous feeling and puking. Does anyone else experience this?

Thanks for the unfortunate welcomes. It feels better to not be alone.

Title: Re: Do I have cluster headache?
Post by nani on Apr 13^th, 2005, 4:22pm

I get nauseous and sometimes vomit. That's because it's my personal reaction to severe pain. It doesn't have anything to do with CH. I've done that for every major medical trauma I've experienced.
I forgot to mention melatonin before. It helps many. Look on the meds board for threads on it.

Title: Re: Do I have cluster headache?
Post by gravelgirl on Apr 13^th, 2005, 4:35pm

I honestly hope that I am not a CH sufferer. Based on other’s postings, it sounds like the worst curse a person could endure. After reading my description of my experiences do you think it could be anything else? A migraine maybe?

What has me seriously stumped is the fact that exact same thing happened to me exactly one week apart and nothing in between.

It’s Wednesday and I have no pain except for an intense fear of when another headache will strike again. Reading that it is called the “suicide headache” is nerve racking due to my original description to my mother the first time that it hit, that if I had a gun I’d use it. How does a person go through a lifetime of these excruciating headaches?

Title: Re: Do I have cluster headache?
Post by nani on Apr 13^th, 2005, 4:40pm

Believe it or not, you do learn to live with it. And you don't have to succumb to the darkness of it. In some ways, that's what it wants and I'll be damned if I'd give in. Get ANGRY and FIGHT...don't despair and give up. If you look around, we all depend very much on each other. We are a crazy, supportive and sometimes argumentative family. This site has literally saved lives. So...I hope you don't...but if you do....you're in the right place. And remember, there are treatments. Some can be very effective.
None of us can diagnose you, only a good neurologist can. [smiley=hug.gif]

Title: Re: Do I have cluster headache?
Post by Jonny on Apr 13^th, 2005, 4:42pm

on 04/13/05 at 16:35:10, gravelgirl wrote:

I honestly hope that I am not a CH sufferer.

So do we!, it would be a bitch to have to pull over in the middle of a race.

Good luck.

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

Title: Re: Do I have cluster headache?
Post by gravelgirl on Apr 13^th, 2005, 4:49pm

on 04/13/05 at 16:42:54, Jonny wrote:

So do we!, it would be a bitch to have to pull over in the middle of a race.

Good luck.

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

Oh god.... hadn't even thought of that yet. I doubt they'd let me still if they found out I had this type of condition.....

I'm getting a headache thinking about getting headaches.

Title: Re: Do I have cluster headache?
Post by Jonny on Apr 13^th, 2005, 4:57pm

on 04/13/05 at 16:49:40, gravelgirl wrote:

Oh god.... hadn't even thought of that yet. I doubt they'd let me still if they found out I had this type of condition.....

Dont sweat that....there are pilots that post here that have not had their ticket pulled.

Get you ass to a good Neuro and find out what the fuck is up with you head ;;D

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

Title: Re: Do I have cluster headache?
Post by Margi on Apr 13^th, 2005, 5:09pm

Agreed. Get in to see a cluster knowledgeable neuro in your area - there is a list of them here: www.clusterheadaches.org (under recommended doctors, first tab on the left).

Really hard to tell if what you've had is cluster, migraine or a really bad reaction to something you ate or drank the night before. If it's only happened twice and you've been sick both times, I'd tend to think it's not cluster. Was the pain relieved by the vomiting? If so, that can be the sign of something else going on. You say you had a CT scan and a spinal tap. Anyone suggested an MRI to you yet? Push for one, ok?

Let us know what you find out.

Title: Re: Do I have cluster headache?
Post by JJA on Apr 14^th, 2005, 8:41am

I have a few questions.

It's not my business, but I'm curious if you were drinking on the 2 nights you got the headaches.

Did the extremely intense pain go away, just leaving you feel "sore" before you went back to sleep (typical of cluster) or did you just eventually fall asleep while the headache was still intense (more typical of migraine)?

Don't worry too much about having CH. Most of us have long pain free periods and live normal lives. Still though, I hope you don't have CH.

Jesse

Title: Re: Do I have cluster headache?
Post by gravelgirl on Apr 14^th, 2005, 1:42pm

on 04/14/05 at 08:41:00, JJA wrote:

I was not drinking, and haven't had a drop for weeks.

I went back to sleep with the pain still intense.
Are you thinking this is just some crazy migraine? I'm going to be curious to see if I get another next Monday, since this is when they like to happen.

Title: Re: Do I have cluster headache?
Post by JJA on Apr 14^th, 2005, 3:20pm

Well, I don't know about the crazy migraine idea, but I think all cluster sufferers agree that it is impossible to sleep while having a cluster headache. That doesn't rule out clusters or rule in migraines. It's just a piece in the puzzle.

Let us know how Monday goes.

Jesse

Title: Re: Do I have cluster headache?
Post by bigAl on Apr 15^th, 2005, 2:58am

Hi gravelgirl

For me it's Tylinol or Ibuprophen that makes me puke, and it doesn't do a bit of good once the pain starts. Just get the ice pack and the O₂ tank. The flu or really dry weather is also a trigger for me.

Title: Re: Do I have cluster headache?
Post by ArCane on Apr 15^th, 2005, 11:21am

on 04/13/05 at 16:16:35, gravelgirl wrote:

One thing I haven't read or heard yet is about the nauseous feeling and puking. Does anyone else experience this?

Thanks for the unfortunate welcomes. It feels better to not be alone.

Many people here will tell you that CH won't make you puke. This is true, most people don't, however some of us do. My family has a history of clusterheadaches. My grandfather, father, aunt, and I all have them. My father and aunt don't get sick, but me and my grandfather do. I get sick everytime it goes beyond a kip 5. It's something I can't help. I also get releif within 5 minutes of vomiting. I think it has to do with breaking out in a heavy sweat and becoming hot and cold quickly. Extreme temperature changes seem to help us even those that don't get sick. You sound to me like you have CH, but to get a true diagnosis see a doctor. Don't let people tell you, you don't have CH because of vomiting. There are people just like you out there. CH and puking happens!!

Title: Re: Do I have cluster headache?
Post by tenacious on Apr 15^th, 2005, 7:45pm

I have cluster and I throw up. When I do I feel better. I don't feel it's a side effect of the meds (although that is common). I have thrown up meds because I was already nauseous when I took them. I have also taken meds and not thrown up. I have to agree with arcane. It sounds like cluster to me, but I'm not a doctor. You should get a medical diagnosis from a qualified neurologist.

Title: Re: Do I have cluster headache?
Post by samsara on Apr 16^th, 2005, 5:16pm

I have never felt nauseous or vomited during a CH... until I got a kip9. That time I really thought I was going to throw up, but it was definitley just because the pain was so bad. So I guess I am in the same boat as nani.. just a reaction to severe pain.

PF wishes.... keep us up to date..

Title: Re: Do I have cluster headache?
Post by gravelgirl on Apr 21^st, 2005, 1:57pm

UPDATE

Ok... Unfortunately, these were not a fluke. They're getting more frequent, but fortunately not worse.

Here's when they've hit me so far:

4/5 Mon/Tues 3:00am
4/12 Mon/Tues 3:30am
4/12 Tues 10:00am (trip to ER)
4/16 Sat 5:00pm (right before/at my race)
4/19 Mon/Tues 2:00am
4/19 Tues 9:00am
4/20 Wed 7:00pm
4/21 Wed/Thurs 3:45am

The ones occurring between 3-4am are the worst. The first few I got I also was puking after I took Tylenol or sinus pills. I haven’t puked since the third one, but felt a bit nauseous anyway. The first few were also the worst in pain. Last night (3:45am) was the last one I got and man did it hurt. But I stayed in bed and rode it out eventually falling back asleep. When I went to the ER they gave me Maxalt (dissolves under tongue). I’ve been taking a Maxalt when I feel it start coming on, but I’m not sure if it’s helped. They haven’t been as bad as when I wasn’t taking the pill, so maybe so. BTW... The pain feels like a knife jabbing into my right temple over and over. My temple throbs so bad you can see it. I also get a pain so intense going up my (right) nose into my brain and my nose gets runny. If I'm not crying, my eyes will tear just a little. This is how it's felt every time, too, just some worse than others.

Please help…. Based on your experiences does this sound like CH??? I have a nurology apointment on the 27th. I've been warned that they might not take me seriously because I'm a 20 year old girl.

Thank You!
~Bris~

Title: Re: Do I have cluster headache?
Post by kimmeesue on Apr 21^st, 2005, 3:01pm

Hi Bristol,

Don't worry about being young and female. I was 26 and pregnant when first diagnosed. A good neuro will see it for what it is and treat accordingly. AND IF YOU DON'T FEEL LIKE YOU ARE BEING TAKEN SERIOUSLY, GO ELSEWHERE. If you have the cajones to get behind the wheel of a speed machine you can stand up to a mere doctor :P. Don't be intimidated.
Best Wishes,
Kim

Title: Re: Do I have cluster headache?
Post by Tiannia on Apr 21^st, 2005, 3:44pm

on 04/15/05 at 19:45:28, tenacious wrote:

I have cluster and I throw up. When I do I feel better. You should get a medical diagnosis from a qualified neurologist.

I have to agree - Migraine ALWAYS made me throw up but I do throw up with CLusters when they are BAD. Above a k7 or ro I can pretty much guarantee that I will be sick. No it does not stop the pain but my body feels better then. I think it is similar to Nani that it is my bodies reation to pain.

Get to a neuro and dont let tmhem tell you women dont get them cause we do. You will be oko even if it is clusters. We all survivie and get through. 22 (hell almost 23) months staight for me and I am still here and fighting. You will be able to do anything you do now just get treatments that help you when an attack comes on (even if it is not clusters.)

Stick around and read. Ask and share. We got a lot of epople here and not all of us are old foggies (I just feel like it some days ;))

-Tia

Title: Re: Do I have cluster headache?
Post by ArCane on Apr 22^nd, 2005, 11:16am

Ive been having CH for 7 years now. Started at 16, diagnosed at 18, and Im now 23. If your neuro doesnt take you seriously find a new one. Good, experienced neuros are hard to find. Sometimes it takes awhile to find the right one. Don't settle for the first one if you dont like his/her answers. It does sound alot like clusters but to be sure check with a doctor. Take care and be strong. It sucks having this type of pain so young, but remember there are people out there just like you. Your not alone in this :). PF wishes to you.

Allen