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        New Message Board Archives >> Jan-Mar 2003 >> New Guy
        
(Message started by: helpmyhead27 on Jan 5^th, 2003, 1:16am)

Title: New Guy
Post by helpmyhead27 on Jan 5^th, 2003, 1:16am

I am a 27 year old male who has had these headaches on and off for around 10 years or so. I just found this web site, and to my shock discovered that what I had considered bizarre idiosyncratic symptoms (like stuffed nose, tearing eye) are part of a real syndrome. I had been under the impression that I must have something unusual wrong with my sinus...and just lived with it.

Now I am realizing maybe I can do more than just live with this problem. Interestingly, since I have dealt with it for so long and did not realize it was a "disease" I never really got very depressed about, although during severe "bouts" I did become a bit scared that I would not be able to function in society if it kept up.

I have read some of this site and thought I would mention some things I notice about my CHs that I haven't seen mentioned. After my CHs go away, I usually feel really good- better than before the headache. I do not usually feel tired, and if I do feel tired, it's a very nice
kind of tired. This strange effect leads me to the problem that I don't seek help because there is no CONSEQUENCE to the headaches...they only matter while I'm having them.

But when I have them they are excruitiating to the point of fantisizing about death. (Not that I really would consider that option) I found two ways to "treat" them that I haven't seen mentioned. One way is to close the nostril on the opposite side from the headache and blow as hard as I can. In rare cases, this can actually blow the headache out of my head. In general, it gives me minor relief, and sometimes accomplishes nothing. Another thing I noticed is that if I wake up with the early signs of a headache, sometimes just getting out of bed and standing up immediately ends it just like that.

But in many cases, the headaches are impossible to treat. No pain reliever seems to help and it is mostly a battle of mental stamina. So I am wondering, is there any over the counter pain reliever that helps at all?
Or should I just forget it? Are there any tricks I haven't mention that can cut off the pain?

Anyway, this recent bout I'm having is quite bad.
The low-level version of the headache persists even after the horrible demon or whatever you guys call it is gone. I've had a kind of low-level CH all day, after a massive 2 hour nightmare earlier. My usual post-headache satisfaction was shortlived! What does this mean? Has anyone else had a bout like this?

One more thing- is any other long-term problem correlated to CHs? Will we have normal lifespans?
Will our heads explode at age 50? I didn't see any info on long-term prognosis.

THANKS!

HMH

Title: Re: New Guy
Post by Jarvis on Jan 5^th, 2003, 1:35am

"normal" lifespans? Hmmmm talk with a few here and you can decide on your own.................As far as the head exploding this happens at various ages and is entirely unpredictable as to just when the explosion will occur. ;D.....

Title: Re: New Guy
Post by KingOfPain on Jan 5^th, 2003, 1:36am

helpmyhead27.............

First thing, welcome to this site.

Secondly, read,read,read. There is alot of helpful, useful info here. The people here are also very helpful & supportive.

Thirdly, after my bouts with the beast, I feel like someone kicked me in the head with a steel toed boot or hit me in the head with a ball-peen hammer. It's as if I have an "inside" bruised head. I am glad you don't suffer these same after-beast effects.

Fourth, I have found no over the counter drug that helps me. If you do find something that works, good for you.

Next, see a Neurologist.

Lastly, if you do have CH, what works for me is oxygen, verapamil, imitrex, & to help keep me out of the ER, I take tylonol 3's (spelling). The 3's are my last ditch effort before ER time.

*Nothing I have spoken of is meant to be a diagnosis or suggested treatment. Consult a Doctor for your symptoms. Preferrably a Neuro.

Good luck & I hope you find something here or elsewhere that helps.

KingOfPain

Title: Re: New Guy
Post by Silver_Dolphins on Jan 5^th, 2003, 9:46am

Hi Helpmyhead and welcome.

To answer what I can of your questions, it appears that clusterheads have normal lifespans and no head explosions (though sometimes, that would be a welcomed relief). I have not found a single OTC pain reliever for CH that works. At all. The lingering minor headaches you refer to are common. We call them "shadows". Depending on the severity of the actual attack, shadows have lasted days with me, or until the next visit by the Beast.

Now that you have discovered what you are suffering form, become familiar with it. Get to a neurologist ASAP and get on a treatment path. Read this website, meet these great people that can help so much, and join OUCH. The link for the OUCH website is on the left highlighted iin yellow. Click it.

Soory you had to find us, but glad you did.

PFDAN

Silver Dolphins a/k/a Barry

Title: Re: New Guy
Post by marty on Jan 5^th, 2003, 10:19am

Hi..

Just like you I thought that I had sinus problems.. so did a number of Doctors that I saw - for a period of 5 years, before I finally (at the ER) talked to a Doctor that knew what CH was. It is not un-common for CH'rs to go for many years not knowing what they are suffering from.

Your post does not say how many times you get hit per day / night, but for me the main problem when it comes to being in cycle is the lack of sleep. How long does your cycle last?

Most of us have our little "private" ways of dealing with the hits.. I drink hot coffee and lots of it, others use frozen bags of peas that they put on their eye, neck, temple or any other place where it provides a diversion. Some stand in a steaming hot shower while others stand in a cold shower.. All the "things" that we do, I am not sure that it really helps against the pain in a physical sense but it provides a diversionary safety blanket - I have never heard of a tough and strong person during a CH attack.. as to myself.. I am pretty pittyful when hit..

Over-the-counter medication.. I know of no such medication.

Follow the advice given above.. read, read and read some more and see your Dr and ask to be sent to a Neuro.

Marty

Title: Re: New Guy
Post by nancyc on Jan 5^th, 2003, 10:38am

Welcome to clusterville, helpmyhead....there are so many good suggestions and fantastic support on this site....I can remember when I was on my 10th year, and it was mild to what I go thru now...I have had clusters for 25 years now...and unfortunately, mine have gotten worse...I am chronic but thank God, pf at this time...thanks to a neuro that really cared about me...and folks at this site that helped me keep hanging in here. You will learn over the years, how to deal with the beast better if you take the suggestions you get here...atleast I have...I can remember times after an attack that I did not feel that fantastic feeling of peace...think I was basically worn out at that time...hang in there and know you have a support system here to help you thru the rough times...God bless...smiles, nancyc

Title: Re: New Guy
Post by cootie on Jan 5^th, 2003, 1:28pm

Helpmyhead....welcome ! Brad always swears and HOPES his first signs the ch's comeing back are sinus....to bad he can't convince that demon in his head. He suffer'd more shadows this last episode then usual but he wasn't takein enuff verapimil per dose I noticed later. Good luck to ya......Pam

Title: Re: New Guy
Post by brain_cramps on Jan 5^th, 2003, 1:38pm

on 01/05/03 at 13:28:57, cootie wrote:

Brad always swears and HOPES his first signs the ch's comeing back are sinus....

I, too, used to rely on the 'sinus status' until this last cycle. Its almost 3months PF, but this time its different. The nostril on that side is still plugged solid about half the time. Still have the odd shadow, not complaining.

Maybe its the beast's way of letting me know he'll be back.

PFDANs
grant

Title: Re: New Guy
Post by cathy on Jan 5^th, 2003, 1:41pm

Hi helpmyhead....wish I could, :-/...... but I think you'll find help here, help to cope if nothing else....like they've said read as much of the info and print it off...take it to a neuro and hopefully you'll get something to help kick the beast in the butt..... >:(

Let us know how you get on...PF wishes coming your way... :)

Cathy

Title: Re: New Guy
Post by cootie on Jan 5^th, 2003, 2:48pm

braincramps...Brad was doin regular nose spray constantly and takein handfulls of advils this past episode...hopein it was anything else but.....ch. He drank beer to relax esp that first week more in the eve's thinkin he was jus stressed and gettin a cold and sinus infection.....and we ate chinese food....man oh man....seems the first several days of the nasal flareup was a blurr of worry....I sorta knew what it was cuz it'd been 3 years and his personality and somea his habits had noticebly changed....was jus sumthin I observed....his eatin habits and how late he stayed up kinda stuff and even a bit of an attitude 'n how he reacted to things. So I am thinkin there are more subtle changes in sum people before they even show symtoms or get pain. Pam

Title: Re: New Guy
Post by domm on Jan 5^th, 2003, 3:09pm

hmh - welcome. No, there isn't any OVC that's going to help. There are a couple of non invasive meds that will abort a CH - the primary one being oxygen. I'm sure you've hit the medications button on the left to see what is recommended.
You started early. Mine didn't start until I was 44. I'm episodic and 51 now, and my head is still attached despite my little GIF image.
Yes, you can live a "normal" life. You just need a few more "timeouts" than others.
Hang tough. Pull up a chair.
domm

Title: Re: New Guy
Post by helpmyhead27 on Jan 5^th, 2003, 4:29pm

Thanks for all he replies. To answer some of your questions, I usually have about 1 headache per day, 2 on a bad day.

I think I am episodic, since the last bout was 2 years ago. However, before that I can't really remember any extended period of time where I didn't have headaches. I was quite surprised that they all of a sudden stopped 2 years ago. (Strangely, I had just become so fed up with them at the time that I had went to the doctor, who prescribed some kind of pain killers, but the headaches never came back after that day so I never took any of the meds.) Unfortunalely, now they are back.

They seem to be correlated with many things people have mentioned on this site- changes in season, warming temperature, lack of sleep.

No one seemed very interested in my method of "blowing the headache out of my head." But it really makes me curious, because it has worked. By blowing really hard through only one nostril, something about the air pressure in the sinuses seems to change. In fact, I can even hear the pressure changing in some cases with a very high squeeking sound. Usually, when I get to the point that I hear that sound, there is real relief, if not complete disappearance, of the headache.

I am certain my symptoms are cluster headaches- I match the descriptions uncannily well. But it seems (in my completely amature opinion) there may be a bit overemphasis in the community on neurochemical and neurological aspects as opposed to mechanical properties of the sinuses themselves.

I realize this is not sinusitis, but it definitely has something to do with sinuses. And the fact that I can blow the headache out by doing something to the sinus pressure suggests there is a strong air pressure component to the way the problem manifests.
This hypothesis is supported by the triggers- changes in season, heating changes, airplane, etc.. Clearly air pressure is a big contributor.

Yet none of the treatments seem to be targeted at controling sinus pressure directly. Am I missing something?

HMH

Title: Re: New Guy
Post by brain_cramps on Jan 5^th, 2003, 4:39pm

on 01/05/03 at 16:29:27, helpmyhead27 wrote:

No one seemed very interested in my method of "blowing the headache out of my head."

I have tried that too, with no luck. The plugged nostril might as well be sealed with Krazy-Glue.

As far as atmospheric conditions, I've thought about that BUT my cycles are 18months apart, almost like clockwork. During that time, we usually go through all four seasons. I say usually, since I'm Canadian. Some years the summer can be pretty short. >:(

Stick around and keep reading,
grant

Title: Re: New Guy
Post by domm on Jan 5^th, 2003, 4:41pm

HMH - IMHO, if controlling the sinus' were the answer, antihistamines would work. They haven't for me. Others have even had sinus surgery to "clean out the sinus'" with no effect on CH. I think the sinus discharge is a side effect of the CH, not the cause.

There are lots of alternate treatments and theories about this horrid condition, and I've tried many that don't work before I found what worked for me. Each of us has and what works for me, doesn't work for others.

I'm glad you found something that works for you.
PFDANs
domm

Title: Re: New Guy
Post by Roxy on Jan 5^th, 2003, 6:17pm

Hi helpmyhead.....sorry they came back to bite you after a 2 yr. break. Hopefully, you have move from chronic to eposodic. They tell me there is that chance.

Sorry you had to find us here....but there are so many people who will help you, it's really amazing.

Scared to try your blowing the nose thing.....fraid I might just blow out what little brains I have left. :)

Roxy

Title: Re: New Guy
Post by Jarvis on Jan 5^th, 2003, 6:22pm

HMH- The sinus isue is one of those standard diagnostic tests that many have gone through on the way to CH diagnosis. That has been done with x-rays to verify that its not the cause...Initially on the way to diagnosis many have been on sinus meds to no avail and often things have gotten worse....... I am sure that many here do as you do by blowing as a natural reaction.......( maybe this is what keeps most of our heads from exploding). Many have done the antihistamine tour as well. But the sinus is definately affected when attacked and just prior..At the end of attack the nostril generally goes from locked shut to running like a faucet for me..It is something many of us feel, similar to you. Like others have said the nostril is a side effect...... ............ "Maybe if your heart is strong" an otc. asthma or stimulant drug like ephedrine may help. I use no other drug only this in low dose and it does help me in the daytime hours. Be carefull with it if you do as many have had serious consequences from ephedra, and also as ueli pointed out once it is on the doping list for disgualifying athletes. .........mj

Title: Re: New Guy
Post by BobG on Jan 5^th, 2003, 7:14pm

I think all clusterheads probably have the healthiest sinus' on the planet. That's the first thing that is "cured" when seeking relief. Then our eyes are "cured" and then the dentist "cures" us and then the ear, nose & throat doc "cures" us. Doesn't do any good though.

I do have the urge to clear my ears during an attack. Like a scuba diver clears his/her ears while going to depth. Hold the nose closed and blow. Doesn't do any good though.

About the feeling good after a bout......I think that during a bout that a lot of adrenaline is released and the tired-but-feeling-good is left over from that.

You asked are there other long-term problem correlated to CHs? Yes. You were born with it......a de-formed hypothalamus :o And you'll have it until you die but you won't die because of it.

Title: Re: New Guy
Post by marty on Jan 5^th, 2003, 7:25pm

on 01/05/03 at 19:14:14, BobG wrote:

IYou asked are there other long-term problem correlated to CHs? Yes. You were born with it......a de-formed hypothalamus :o And you'll have it until you die but you won't die because of it.

Bob..(or anyone else that knows) tell me more about this.

Marty

Title: Re: New Guy
Post by BobG on Jan 5^th, 2003, 7:31pm

Here ya go Marty. From the OUCH library.

http://www.clusterheadaches.org/library/hypothalamus/index.htm

Title: Re: New Guy
Post by brain_cramps on Jan 5^th, 2003, 7:43pm

Marty: another one

http://www.abc.net.au/science/news/stories/s31951.htm

Title: Re: New Guy
Post by marty on Jan 5^th, 2003, 7:47pm

Thanks Bob..

I knew about the internal body clock stuff.. I guess that the Hypo.. ??? threw me off..

And now I make myself look even worse for trying to prove that I am as dumb and ignorant as I look by trying to.. forget it - I'll just shut up now;D ;D

Marty

Title: Re: New Guy
Post by BobG on Jan 5^th, 2003, 7:52pm

The Hypo is an ~~itty-bitty~~ small gland but does a great deal of stuff. Internal clock, body temperature, seratonin/melatonin release, sleep-don't sleep and others.

edit note:
I can't believe I used the word itty-bitty. Sounds like a sissy wrote it.

Title: Re: New Guy
Post by cootie on Jan 5^th, 2003, 8:11pm

ittsy-bitsy-teeny-weeny works.....and I'm no sissy ! Pam ;D ;) ;D ;)

Title: Re: New Guy
Post by Jarvis on Jan 5^th, 2003, 11:49pm

.BUT, but Pam your a girl and girls are sissies. .....Girls have cooties too.... My boy age 7, just reinformed me of this today like I didnt allready know... ::) geez sounds like your in denial.

Title: Re: New Guy
Post by helpmyhead27 on Jan 6^th, 2003, 3:23am

It's great to finally have somewhere to talk about this stuff. I have spent years privately wondering about my headaches and never imagined anyone else would be able to relate.

Anyway, I am curious about the ER, which seems to come up here and there. I have never been to the ER for a headache, and I am wondering why people are going to the ER? First, how do you manage to drive there? Second, does the ER even care about headaches? Aren't you placed in ther back of the line? Third, what can they do that you can't do at home?
Finally, isn't the headache all but gone by the time anyone sees you?

I can understand the pain driving you to do anything, I am just curious about the practical result of going to the ER.

I was also amazed to hear that some people punch things and jump around in agony. I haven't done this. My response is usually either to pace or curl up into a ball with my face down.

I have even found in some situations it is necessary to maintain composure. For instance, in a social setting, at a movie, or in an airplane. This can be agonizing, but I have found it possible to just sit still and sweat it out. I even had a complete conversation with a stranger a few days ago during a CH, although the conversation became more and more her talking and me nodding. But still, I somehow lived through it. It makes me wonder how possible it is to live through pain.

It seems almost like the CH has some kind of profound philosophical lesson attached to it. I mean, I always feel like "me" is slowly slipping away as the headache escalates and being replaced only by rage. I try to keep a hold of myself, but my normal thoughts go down from 100% to 50% to 5% to maybe 0.1% of my being. The rest is just rage and suffering. Sometimes I even think to myself ironically during the headache (before it gets unbearable) that my diminishing self is kind of "interesting."

Pardon my rambling on..this is my first time connecting to
other people with the same thing. Do CH's ever not end? Have you ever heard of such a thing? I mean can you have the beast for days on end? Such a state is unthinkable almost, but it is always my biggest fear when I am having a prolonged high-level CHs.
I think the biggest consolation during the headache is knowing it will end soon.

I have appreciated the warm welcome! Thank you!

HMH

Title: Re: New Guy
Post by Charlie on Jan 6^th, 2003, 7:18am

No need to worry. Clusters just make you want to die, they do not necessarily hurry the process. Stick around. You'll find lots of good ideas here and you are right; we know exactly what it's like and what it does to you. You might give this a whirl:

Dr. Wright's Circulatory Technique

This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.

When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.

This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.

This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.

When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.

I wish you the best of luck - Charlie Strand

Title: Re: New Guy
Post by ave on Jan 6^th, 2003, 8:21am

Hello HMH,

I too discovered, entirely on my own, that I could abort an attack till level Kip 4 with "snorting". It never works on the more intense pain, though.

Like you, after an attack suddenly leaves, I feel a sort of bliss, and not the bruised feeling many others have.

If you want to look up tricks for natural treatment, go to the OUCH site (button left) and check out cluster help and cluster resources.They won't chase intense attacks, but may help you survive the lesser ones.

Title: Re: New Guy
Post by SommelierCH on Jan 6^th, 2003, 10:23am

Welcome HMH,

The three things proven to give us Clusterheads some relief, can all be, and have been, prescribed by primary care physicians. There is no need to wait two months, for a Neuro appointment, before you can find some help.

These three things are divided into two categories:

PREVENTIVE:
Verapamil (calcium channel blocker) Sustained Release (please correct me if I’m wrong, people), takes about a week to kick in when at the start of a cycle. In the middle of a cycle…..?… Documentation shows up to 900 mgs. a day (until the pain is gone). IT’S CHEAP.

ABORTIVE:
Triptans: You know about Imatrix, there are also, fast dissolving triptan tabs including: Maxalt MLT 10mg and Zomig ZMT 5mg. IT’S EXPENSIVE.

100% pure Oxygen: The most important part for a Clusterhead. 10 liters/min. through a non-rebreathing mask. IT’S CHEAP AND SAFE.

I have also found that taking any “pain” meds causes a delayed rebound attack.

You know your body better than anyone else, read all you can on this site, using the search. Also, check out the OUCH site (join up while you are there, it’s free) you just can’t get enough information about the Beast.

Good Luck,

David J.

Title: Re: New Guy
Post by Opus on Jan 6^th, 2003, 10:45am

NMH,
My cycles always start with a sinus problems. It may be the trigger or just be part of the problem. My last cycle I had my first kip10 (see "the Kip scale on the left buttons) and everything drained out of my sinuses in 10 minutes. Here is a link to some home remedies.
http://www.clusterheadaches.org/resources/non_script_treat.htm
Hope this helps.
Opus :P