Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Signing in
        
(Message started by: NoMoreCH on May 29^th, 2007, 4:43am)

Title: Signing in
Post by NoMoreCH on May 29^th, 2007, 4:43am

Hello all.

NMCH here, glad to see this site exists...

Brief background: 42yo male, living in Spain, slightly overweight, otherwise healthy. First experiences with CH, or well, long before I knew what it was, was during sex. I could have sex normally, but all of a sudden could not climax. I simply could not get over the threshold.

Pressure kept building up in my left side temple, and the closer to the threshold, the more the pressure on my temple and left eye increased. Very interesting, and very brief, because this went away after a few weeks. This was eight years ago. Now, on and off this symptom came back, but never bothered me much.

Then, some three years ago I was having a glass of red wine (I make my own) and I felt the same pressure creeping up! Within minutes my left eye felt as if it was going to pop out of my skull and roll away somewhere. This was less funny ofcourse. I had no idea what caused this, and the pain went away after some 20 minutes. The connection with the wine I did not make at that time.

Funny thing was, that I recall eating in a restaurant the next day and having some white wine and all was fine. All was fine until a year later (I think). Some two years ago I had a party and obviously had too much to drink. I woke up around 03:00am, still intoxicated, and at first I did not know what the hell was going on. My left eye was sealed shut, my nose was running from the left nostril, and there was pain. A pain that was rich, very rich, beautiful, awesome and frightening all at the same time. Someone had stuck a long iron nail in my left eye while I was asleep, I was sure of it!

Staggering to the bathroom I switched on the light, and switched it off right away. Couldn´t stand it. Switched on a less bright light in the hallway and looked in the mirror. It looked like someone had punched me right smack in the middle of my left eye, it was dark red up to the iris. I couldn´t open my left eye but for 1/4 of an inch. And the pain, that awesome pain was there. I almost could not think of anything else. I started scrambling for any painkillers I could find, and settled for two grams of Paracetemol. Back in bed, I could not lie still. The pain intensified. How was this possible? In the end I went outside the house and circled it some three or four times. Suddenly I felt better after what must have been a full hour of terror.

This was my first full bout with CH, and alas not the last.

Currently I am back into my cycle, I must admit I am mostly painfree at this point. Here is how I manage:

* I drink one small strong coffee around every two hours
It is _vital_ you learn to drink small strong coffees without sugar and without milk. Pure coffee only. I used to drink coffee with milk and sugar, but THIS MAKES THINGS WORSE. Small (espresso sized) coffee without anything else. Learn it. It helps.

* Avoid alcohol during cycle. Just about the only thing I can drink is Whiskey & Cola (Or RedBull) mixed together. And very small quantities. No Beer. No Wine. Two sips and I´m dead. Strange isn´t it?

* Absolutely no painkillers whatsoever.

And then I wait, just wait. Usually four weeks and it is all back to normal. And I know in six months it starts all over again.

I feel I am one of the lucky ones, having only a mild form of CH. I feel the pressure, the devil caressing my left side cereberal nerve, but there is no pain during the day as long as I do not take alcohol.

Nights during the cycle: I must sleep on my right side. If I roll over on my left side I am wide awake in terror very soon. Once that happens I immediately roll over on my right side and lock my legs behind me on the left so I simply cannot roll on my back or left again. If the pain is not gone within five minutes, I prop myself up on my elbow, and heavily lean my head to the right, tilting the left side of my head as far up and left as I can. If the pain has not gone within five minutes after that I know I am in trouble, but fortunatly this is only two out of ten. The Alamo for me then is to get up and walk outside. Close my eyes and point my nose in the night air and breathe while silently counting. Starting like this IN THROUGHT THE NOSE (One...Two...Three....(One long inhale)THEN OUT THROUGHT THE MOUTH Four...Five...Six...Seven...Eight...Nine...Ten...(One long exhale). It is hard at first because you think you do not have any air in your lungs left but push as much out as you can but do not start inhaling again before you reach ten. Then you start all over again. 3 seconds inhale through the nose, 7 seconds exhale through the mouth (nice and slow). Doing this ten times will end the attack.

It is something I can live with and am starting to understand. I am researching a bit as well because I feel that there must be a way to restore the functionality which causes the erronous blood flow and 20x dilation of the veins behind the eye.

Anyway, glad I found this site, thanks for reading this.

Title: Re: Signing in
Post by seasonalboomer on May 29^th, 2007, 7:17am

Glad you found CH.com. Welcome.

There are a couple of easy things you might look into so that you aren't just "waiting" through your headache.

Oxygen (15 lpm with a non-rebreather mask) at the onset of a cluster headache has high perecentage capability of putting down a headache in less than 10 minutes. 10 minutes wait will seem like nothing if you've been waiting through a full length one.

Imitrex injections -- most times it takes less than 7 minutes and it is gone. Some don't like the side effects. I don't seem to mind...versus "waiting" through a CH -- I'll take the short term funny feeling that comes with them.

Good luck -- you don't have to just "wait" -- there are real options for us CH'ers.

Scott

Title: Re: Signing in
Post by Yorky on May 29^th, 2007, 10:25am

hello nmch.
please could you offer , some more info

about how you were diagnosed, and what meds you have tried

i notice this is your 1 post (and a good one, )

Title: Re: Signing in
Post by NoMoreCH on May 29^th, 2007, 11:45am

Hi Guys,

Well I have the attacks pretty much under control as I said. I´m looking for a small portable O2 device for the real "bad" ones -or Alamo- as mentioned. For the rest of the attacks I do not use anything but for the things I´ve mentioned.

As far as diagnosis, I found out what it was about a year ago using the internet. I´m not much of a doctor goer myself, and prefer to to keep the doctors visits to an absolute minimum. The thing that gave it away was the alcohol trigger, and the pain always on the same side centered around the eye...

Thanks for the welcome!

Title: Re: Signing in
Post by Redd on May 29^th, 2007, 1:29pm

The trouble with self diagnosis, is that your condition could be much more serious than CH.

You really need to see a headache specialist/Neurologist so that any underlying conditions, (brain tumor, just to mention one) can be ruled out.

Title: Re: Signing in
Post by Sandy_C on May 29^th, 2007, 5:05pm

I agree with Redd. Even though you're not "much for doctors", this is one case where you really need a confirmed diagnosis that it is CH.

The breathing technique you described is pretty much Lamaze breathing for childbirth. It does work for childbirth (did it twice), and it does help for CH, sort of, until you get the BIG hits.

But, NMCH, there are other things that could be going on in your head that mimic clusters, and a firm diagnosis one way or the other is pretty much mandatory. If it is CH, there is no cure, but there are many wonderful medications that can help make your life more comfortable and liveable. However, some of those medications can also kill you if its not CH. See why it's vital to have a confirmed diagnosis???

If you do decide to go to the doc, it will also help if you have a journal of your headache pain, date, time of day, duration of pain, intensity of pain. Also, make note of what you ate or drank prior to the pain. Read everything on these boards, print out all of the material and take it with you to the doc. You are your own best advocate.

If it is CH, insist on 02, with a non re-breather mask and a regulator that goes to a minimum of 15 lpm. It's one of the cheapest and least dangerous as far as side effects available to Clusterheads. 02 is our friend.

I'm hoping you don't have CH, and I'm sorry for your pain. Please see a neuro, get a diagnosis, but also please keep letting us know how you are doing. We care.

Wishing you PF times

Sandy

Title: Re: Signing in
Post by Linda_Howell on May 29^th, 2007, 7:32pm

Not much for going to the doctor myself, but Dang......they sure are handy when you need a script for 02

Title: Re: Signing in
Post by NoMoreCH on May 30^th, 2007, 4:11pm

Thanks for your advice everyone..

Well, for now I´m coping, all symptoms point to CH so I´ll go with that. If the status quo changes I´ll check in with a MD. I´m in Spain, good look finding a headache specialist here...

I will definitly look for a portable o2 device I can keep in my car! O2 makes sense.

The "no cure" thing sure is tempting me to look for one...

Is there agreement amongst you that CH is caused by a failing Hypothalamus? Just wishing there is something which can be done.. A "Lorenzo´s Oil". But maybe this is for another thread...

I´m happy I´ve found this board...^--^

Title: Re: Signing in
Post by BMoneeTheMoneeMan on May 30^th, 2007, 5:49pm

on 05/30/07 at 16:11:20, NoMoreCH wrote:

Just wishing there is something which can be done.. A "Lorenzo´s Oil". But maybe this is for another thread...

I´m happy I´ve found this board...^--^

Lorenzo's Oil? Is that the same as snake oil?

We are glad you found us too, and glad to hear you have your head under control.

I am not a doctor goer as well. I suffered through 2 hard cycles before even making an appointment. It's best to get a diagnosis. It's possible you suffer from something that can be seen in a scan. If you are not flailing around and banging your head on walls, I would say you might not have CH. Whatever you might have could be much more serious.

PF wishes to all
B$

Title: Re: Signing in
Post by NoMoreCH on May 31^st, 2007, 2:34pm

on 05/30/07 at 17:49:19, BMoneeTheMoneeMan wrote:

Lorenzo's Oil? Is that the same as snake oil?

No, it´s the cure which was found by the parents of a small boy suffering from (at that time) incurable and fatal disease called Adrenoleukodystrophy (ALD).

The boy´s name is Lorenzo, hence Lorenzo´s Oil.

A movie was made about this true story starring Nick Nolte and Susan Sarandon. More info on http://en.wikipedia.org/wiki/Lorenzo's_Oil

On another note, yes the pain is so intense I could bang my head into the wall, but I prefer to pace around myself. As I´m in the cycle I had another painful episode just now as I had a nap and rolled to the "wrong" side. No use in banging... I find the more relaxed I stay the sooner it is over (but for the pacing). Anything else makes it worse like

* Massaging your eye and eyesocket
* Pressing down hard on your forehead and temples
* Trying to block the blood flow in any which way

It just makes it worse and worse. I just try and relax, even though it is extremely hard to do so with the red hot ice pick in my eye and throbbing skull. You must admit that these amounts of pain are overkill for the human body... At times I think to myself, "Gee thanks for the signals, but I get the message now, thanks". Almost makes me laugh if I wasn´t in such agony...

I am not afraid at all about something more serious like a tumor, because the symptoms are not classic tumor symptoms, plus the fact that if it were a tumor I would have known by now. (My first symptoms started eight years ago). As I said I might have a scan made, but at this time I see no compelling reason to do so, because all the symptoms match CH 100%. Now if I would start experiencing loss or distortions of vision, tinnitus (Ringing or heartbeat in one or both ears). Paralysis of the limbs (especially on one side) and/or extremities or obvious memory loss I would indeed be interestedf in an Echo of my brain. For now: nah.

Thanks for all the replies!

Title: Re: Signing in
Post by Redd on May 31^st, 2007, 6:49pm

Listen NoMore,

We aren't trying to bust your hump or anything here. This site was built and started by DJ for 2 reasons. Yes...to commisserate about our affliction. But also to help each guide each other when things are looking amiss.

Let me repeat

SELF DIAGNOSIS IS VERY DANGEROUS!!!

You are not a doctor, and therefore cannot and should not be trying to diagnos your symptoms off the internet.

It is critical that you understands that there are conditions who's symptoms can be confused with CH. Some of those conditions are very dangerous if not deadly. To NOT seek out confirmation of whatever it is you suffer from is ignorant on your part.

Doctors have misdiagnosed people with CH when they haven't had it. People like me were mis-diagnosed for 20 years as having something else and it was CH all along.

We are here to give solid advice, as well as support. But it's difficult not to get frustrated when someone blatently ignores what is best for them.

Quote:

Paralysis of the limbs (especially on one side) and/or extremities or obvious memory loss I would indeed be interestedf in an Echo of my brain. For now: nah.

By then...it's much too late.

Title: Re: Signing in
Post by Poli on Jun 1^st, 2007, 1:03pm

Hola NMCH, I know some good neuros in Alicante, if you want names send me a PM, they can prescribe you for free the O2 and order a Scan to be sure nothing more is wrong in your brain.
Saludos
Poli (In Alicante)

Title: Re: Signing in
Post by NoMoreCH on Jun 7^th, 2007, 5:08am

Hola Poli,

I have PM´ed you just now...

Gracias........