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(Message started by: fubar on Oct 4^th, 2002, 2:33pm)

Title: Questions... so many questions
Post by fubar on Oct 4^th, 2002, 2:33pm

OK, I've lurked. Now I have questions.

In no particular order...

1) How many clusterheads out there have had an attack during great physical activity? (as a data point, I've had them come on when I was water skiing, having sex, running, and no I wasn't doing all of that at the same time)

2) For women only... how does a cluster headache compare to having a baby?

3) The onset can be soooo fast. How many of you have had them come on while driving?

4) How many clusterheads also have classic migraines? Did you have them before or after your first cluster attack?

5) How many years did you have cluster headaches before you knew what they were?

6) Does anyone know of any statistics regarding CH sufferers and suicide? Has there ever been a study on this?

-fubar

Title: Re: Questions... so many questions
Post by echo on Oct 4^th, 2002, 2:48pm

1. can't remember one coming on during high activity.
2.
3. Have had a few while driving. Came on slow. Had bad ones and went driving -- ER runs.
4. Straight CH for me
5. about 20
6. In 84 a neuro told me the following after having found me to be a card carring member of the CH club.
65% of people (back then he said men) who suffer CH will committ suicide. Of those who committ suicide - 85% of them will shoot themselves in the right eye. Don't know if he had any supportive facts or was shooting (no pun intended) from the hip.

Title: Re: Questions... so many questions
Post by SFChris on Oct 4^th, 2002, 2:55pm

Fubar,

1) My cycle started with me getting hit anytime I would attempt sexual activity...it was pathetic. It pretty quickly morphed into getting hit every night at the same time, but I was so freaked out about getting hit during sex that I somehow managed to keep from even getting excited (do you get my drift?) for about eight weeks.

3) I was hit once while driving. I managed to pull off the freeway safely, but it scared the shit out of me.

5) I had a couple of short cycles without diagnosis over the past 20 years (first started when I was about 20). This past year was what I will think of as my first real cycle...it lasted almost 9 months. I've now been pain free for almost a month!!!

Good luck,

Chris

Title: Re: Questions... so many questions
Post by kparent on Oct 4^th, 2002, 3:09pm

Answers:

1. Yes, I had an attack while on the treadmill at my gym

2. Compared to child birth (un-medicated) I'd take a cluster headache any day.

3. Driving....Not yet....thank goodness

4. That is what I was diagnosed with CH and CM...I had the migraines before the cluster headaches

5. Just started last July

6. Nope.....but would like to see one if one exists

Title: Re: Questions... so many questions
Post by oringkid on Oct 4^th, 2002, 3:32pm

1) doesn't seem to coincide (in fact sex will relieve them)
2) I had unmedicated child birth and clusters are definitely worse.
3) had them while driving
4) no classic migraine but have ocular migraine (aura without the pain) onset - after clusters
5) around 15 years
6) no

Sherry

Title: Re: Questions... so many questions
Post by Charlie on Oct 4^th, 2002, 6:51pm

OKAY:

1) Activity? Nope
2)
3) Don't drive >:(
4) Never had a migraine
5) About a month
6) Suicide and clusters is extremely rare if it can be proven at all.

Charlie

Title: Re: Questions... so many questions
Post by jonny on Oct 4^th, 2002, 7:02pm

When I gave unmedicated birth I thought I was dying, but when I had my first CH attack I knew I was dying.

Since then Ive had my left arm detached in a motorcycle accident and still the pain of CH is worse.

If I ever get this little pig off my mule I will be happy, Damn thing does nothing but squeal ;D

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

Title: Re: Questions... so many questions
Post by Marc on Oct 4^th, 2002, 8:16pm

1) Nope, just the opposite. Strenuous physical activity is my #1 abortive. (No, not sex - can't even imagine "getting excited" to quote SFChris ;D)

2)

3) Yup. LA and San Francisco are each about 3.5 hours away. I drive to both on a very regular basis. Used to get hit in the car A LOT - no choice but to pull over wherever I am - driving is totally impossible. I've been very lucky with the cops I've met - very understanding.

4) No meegraines, no "human" headaches either - only CH's.

5) Three years

6) Have no idea. I suspect the fact that most of us have thought about it has given rise to false stats.

Marc

Title: Re: Questions... so many questions
Post by Bob P on Oct 4^th, 2002, 9:18pm

1) Like Marc, exercise will abort a building attack.
2) Childbirth didn't hurt me but my wife didn't appreciate it.
3) Yes, a few times.
4) No meegrines
5) 1 year
6) Many think of it but few carry it out.

Title: Re: Questions... so many questions
Post by LTBullitt on Oct 4^th, 2002, 10:28pm

1) How many clusterheads out there have had an attack during great physical activity? (as a data point, I've had them come on when I was water skiing, having sex, running, and no I wasn't doing all of that at the same time)
I like this Q, because it always happens but never during the activity itself. It is always as soon as I am finished. The second that cool down/relaxtion point starts I am hit, and hard.
2) For women only... how does a cluster headache compare to having a baby? male, dq

3) The onset can be soooo fast. How many of you have had them come on while driving? I drive equally as bad without one but no I won't drive if I'm anywhere near a cycle.

4) How many clusterheads also have classic migraines? Did you have them before or after your first cluster attack?
The last few years I have been getting migraines to add to the fun. The first 10 years or so it was just CHS.
5) How many years did you have cluster headaches before you knew what they were? I was diagnosed properly the first year but nothing was done about it.

6) Does anyone know of any statistics regarding CH sufferers and suicide? Has there ever been a study on this?
No, but I will be one soon.

Title: Re: Questions... so many questions
Post by marty on Oct 5^th, 2002, 2:00am

As to your # 3 question... Southern Cal. parking lots have seen me on many occasions... It hits me real fast and I "better" find a parking lot or something fast. I try to avoid shopping mall parking lots (people tend to stare a-lot (probably thinking that I'm on drugs or something - true, but not the illegal kind)

Marty

Title: Re: Questions... so many questions
Post by RevDeFord on Oct 5^th, 2002, 2:33am

on 10/04/02 at 14:33:09, fubar wrote:

1) How many clusterheads out there have had an attack during great physical activity? (as a data point, I've had them come on when I was water skiing, having sex, running, and no I wasn't doing all of that at the same time)

It seems like I have had, but I cannot recall

3) The onset can be soooo fast. How many of you have had them come on while driving?

Me- The other day.

4) How many clusterheads also have classic migraines? Did you have them before or after your first cluster attack?

I have always had migraines from when I was a small child. I started having cluster headaches when I was 15 years old

5) How many years did you have cluster headaches before you knew what they were?

I thought I was going crazy for years. My dad is a paramedic and we would be where ever and one would hit out of the blue and he would say, "Headaches just don't come and go like that". I had them for 4 years or so, when I was at the mall and had one. I went driving over to the little Doc in the Box clinic next to the mall and the doctor saw me come in and took me right to a room. It was there where I was diagnosed. Thank God for that dude. I would never go to the doctor for them because I would never have one long enough to get there.

6) Does anyone know of any statistics regarding CH sufferers and suicide? Has there ever been a study on this?

When the Doc in the Box(this is my name for those little private emergency clinics) guy talked to me about CH, he said that as many as 80 percent of those that have CH commit suicide or attempt to commit suicide. He said it was a serious disorder that I needed to talk with a neurologist immediately for. That was like 11 or 12 years ago, so I am still amazed that this guy had the knowlege that so many doctors do not have. I don't know from where he gleaned this information, but it sure made an impact on me. :o

Title: Re: Questions... so many questions
Post by NancyMcFree on Oct 5^th, 2002, 8:10am

1. I have used exercise as an abortive
2.
3. Never. Have had shadows but never a banger
4. No migraines. Never any real headaches either
5. 1 month
6. Don't know the stats .. I'm sure most of us have thought about it. I don't plan on adding to the number though.

Title: Re: Questions... so many questions
Post by BobG on Oct 5^th, 2002, 8:57am

1. During great great physical activity? Never
But, while we're on the subject and you mentioned during sex?, IMHO, anyone that says they use sex, especially a man, to relieve a headache is not having a cluster headache.
2.
3. This has happened to me.
4. Never had a migraine, classic or otherwise.
5. Can't remember but it was many years, maybe 7 or 9.
6. I've never seen a study on this subject. How would anyone know if the death was because of the pain or something else. Dead is dead, you can't very well ask them. And any numbers I've ever seen seem to me to be inflated X hundreds if not thousands. Depends on how much shock value the author thinks his statistics are worth. Personally, I know of zero suicides due to clusters.

Title: Re: Questions... so many questions
Post by Linda T on Oct 5^th, 2002, 10:43am

1. Only get ch when I relax.
2. CH worse than childbirth.
3. Had had a few kip 5's while driving but fortunately I was close to home.
4. Never had a migraine.
5. First cycle in 1984. Next cycle in 1995. Didn't know what there were until then.
6. Sorry. Don't know statistics.

Wishing you all PFDAN always, Linda T

Title: Re: Questions... so many questions
Post by kim on Oct 5^th, 2002, 12:27pm

1. Almost always get hit during relaxation
2. Clusters worse than childbirth (although I WAS asleep ;D - c-sections) um,
3. Yup. Have had while driving bunch of times
4. Never had a migraine
5. About 7 years (episodic)
6. As far as I know a MI-NUTE amount of cluster related suicide. Don't know the stats.

Title: Re: Questions... so many questions
Post by sueellen83 on Oct 8^th, 2002, 10:05am

1. I have had Ch start during sex
2. Definately worse than child birth. Didn't feel contractions, Dr. said my pain tolerance was high due to CH
3. Have been hit hard while driving. Had to pull over until CH passed
4. No migraines.
5. CH started when I was 7. Was miss diagnosed when I was 16, finally correct diagnosis at age 22. 15 years I guess.
6. Don't know any stats

Title: Re: Questions... so many questions
Post by cox3406 on Oct 8^th, 2002, 12:02pm

Hey FUBAR,
Here we go...
1-My activity level don't seem to matter. In my younger days I worked for Mayflower, moving others stuff, the most strenious job I ever had and I had plenty of HA on the job. Embarassing and costly in delays.
2- Its like having a baby alien in my head, close as I can get.
3-Plenty of times driving, car, movin van, motorcycle, dogsled, it don't matter. Pull over and wait.
4-I wish I had a regular HA. Only CH.
5-Pain started at 12, mis-diagnosed until age 29.
Probley saw 20 Doctors in 20 years, to no avail.
6- On my initial visit to my current Neuro one of his questions was, "Have you ever though about suicide?"
Yep, a bunch. I don't have concrete stats, but going on personal experience I bet more than you think are CH and pain related.
PF for 3 hours now, heading to the Neuro.
Later all,
Mark :-/