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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> My first ever Week in HELL. 
        
(Message started by: JustinAC on Mar 9^th, 2007, 5:57pm)

Title: My first ever Week in HELL.
Post by JustinAC on Mar 9^th, 2007, 5:57pm

I've just been diagnosed with CH in this past week. I'm 24 and all I have to say is OH MY GOD I hope this doesn't continue for the rest of my life! lol

I'm in the middle of a bout as I type this out right now...It's difficult......I feel like a grade schooler having to reread everything to make sure I didn't misspell anything.

Anywho...Found this site by sheer chance.......It's comforting to know that no matter how rare it is, There are people out there that understand me.

Title: Re: My first ever Week in HELL.
Post by stevec on Mar 9^th, 2007, 7:19pm

Hey, Justin,
So you have just become acquainted with the beast. Read everything you can on this board. There are good preventative medicines available and good abortive ones, too. Keep in touch. We really do understand. Good luck, and lots of pain free days!

Title: Re: My first ever Week in HELL.
Post by georgej on Mar 9^th, 2007, 8:01pm

Hi Justin,

Sorry to hear you've had your first contact with the beast.

Try not to think of what might lie in the future. The only way to live with this (if indeed you end up living with it--sometimes folks have a single cycle, or only a few) is to deal with it one day at a time, one hit at a time. It comes, it sucks, and then it goes away.

Read everything you can about the condition, and educate yourself about the treatment options available. It's been the experience of many here that many of the doctors who treat us are not familiar with the best treatment options. Knowledge, as always, is powerful. Pay particular attention to the oxygen link at the left side of your screen--oxygen, properly administered, is a safe, effective abortive treatment for many of us.

Above all--welcome home. Ask any questions you'd like. We'll help as best we can.

Best wishes,

George

P. S.--are you a lefty (with your headaches)? Just askin'. ;)

Title: Re: My first ever Week in HELL.
Post by Rosybabe on Mar 9^th, 2007, 9:35pm

I am so sorry Justin to hear you are one of us!!!

I have been a sufferer for over 20 years and you do learn to live with this condition.

Just do not let CH's rule your life. There are medicines out there that can make life a little easier for us.

Get a good Doctor and always ask what is the best he can give you.

This site is great ! you can find all kind of information and of course support and understanding.

Hang in there and I wish you a very very short cycle!!

PFD for you!!!

Title: Re: My first ever Week in HELL.
Post by Guiseppi on Mar 9^th, 2007, 10:47pm

If you get a chance, post what you've used that has worked, what you're using for a prevent, an abortive etc. Sharing what does and doesn't work is what makes the board work so well. And welcome to the nut house!!!

Guiseppi

Title: Re: My first ever Week in HELL.
Post by JustinAC on Mar 10^th, 2007, 3:43am

on 03/09/07 at 20:01:50, georgej wrote:

So far all the headaches have been happening on the left side......They've all been starting at around 11am and go until about 6pm. They don't hit me like a rock persey, they come on slow for about 10 minutes and then intensify. My ear never really hurts, Just above my eye and only once did my face hurt under my eye.

It feels more like throbbing....Everytime my heart beats it hurts like HELL. After the episode passes, for about an hour to 3 hours I have this weird feeling in my temple that another one is gonna hit but it hasn't happened yet, only at 11am the next day.

I was told to "Stay away from smoking" but funny as it may sound, When I smoke a cigarette, It makes it feel better temporarily.

Ice packs intensify it 10 fold and seem to make it last longer. A hot shower does absolutely nothing. I took 1200mgs of Ibuprofen (yea I know, Not smart) and that did absolutely nothing. Even with drinking water non stop, nothing changed. I'm sensitive to light but not necessarily sound. I work in a studio all day so it really never bothers me. With a migrain sound was a problem but with this, it has been soothing at times.

I'm 24. The symptoms of this starting happening about a day after I had the flu. It came on as what felt like a regular headache for about 5 minutes and then just out of nowhere hit me like a ton of bricks. I was pulling my hair out and could not sit still to save my life. That first episode lasted damn near all day. I couldn't really tell if it was all one or a multiple number of them happenning in succession of one another.

I've been checked by 2 different doctors and they both said the same thing, Cluster Headaches. THey prescribed me verapimil but because I'm a smoker, I'd kind of like to ditch the cigs for a while before I go lowering my blood pressure anymore than it already is. lol

So yea, From what I've read, hundreds of pages, from people on here, My case seems to be a whole lot different. But yes, they happen on the left side only........or for now as the start anyways.

Does that signify anything? Does my case sound strange to anyone?

Without the use of a headache notebook, I can tell you that I have a history of alway staying up late with no real set sleep schedule, No drug use, but no real set sleep schedule, sometime staying away for days on end. I don't drink alcohol but more than maybe twice a year. I do smoke a lot of cigs though. I eat generally pretty healty, only this last time I had the flu and the symptoms started, I was living off straight mexican food and junk. When the doctors finished with me they did note that for a 5 year chain smoker I was all around pretty damn healthy for being so destructive on my body like that. I do have a tiny history of acid use but years ago in highschool.

I've told them all that and they said that drug use or not, it's really just lottery luck of the draw. Yes somethings can help to make it worse or a slight bit more of a chance but none of what I've done, besides smoking, really bring it on.

Simply put, Before this started, I could get rid of a really bad regular headahce with a childrens tylenol. Now I can't make these go away to save my life. lol

Title: Re: My first ever Week in HELL.
Post by nani on Mar 10^th, 2007, 5:37am

Hi Justin. Sorry you're having such a bad time.
Two things that you mentioned came to my attention. One is:
It feels more like throbbing....Everytime my heart beats it hurts like HELL
Typically, CH pain is steady, piercing and burning.
The other is:
They've all been starting at around 11am and go until about 6pm.
Typically, clusters last from 15 min - 3 hours.
This might be a good time to start keeping a headache diary, and see someone who specializes in headaches. There are other headaches that have symptoms similar to CH, but the meds used to treat them may be different. pain free wishes, nani

Title: Re: My first ever Week in HELL.
Post by JustinAC on Mar 10^th, 2007, 6:00am

on 03/10/07 at 05:37:13, nani wrote:

Is CH the only one of the varied types of headaches that has no real preventative treatment?

I'm still in the process of getting scheduled to see more doctors on this. I only hope that if I Dont have CH that I at least have something that can be treated. It's no wonder they call CH the "Suicide Disease"....I'd NEVER go that route to releive pain but I do see where that would be a description of it.

But then again, I've only begun to have these effects...Who's to tell if they're just building into crescendo to a full on cluster headache...Everyone's body handle things differently, Although not completely differently, Enough so that things can be more or less tolerable.

Title: Re: My first ever Week in HELL.
Post by barry_sword on Mar 10^th, 2007, 6:27am

Hi Justin, nice to meet you. Lots and lots of help here so you are with good people who are very helpful.

Barry

PS: One Day At A Time! :)

Title: Re: My first ever Week in HELL.
Post by E-Double on Mar 10^th, 2007, 8:54am

Hiya

This is a great resource to know like the back of your hand...print it out and give it to the doc

http://www.brightok.net/~mnjday/chtherapy.pdf

It will present the appropriate treatments that you should seek and your doctor should know!!!

If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=medsarchive2005;action=display;num=1120904753

If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.

With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05 now just awaken from a 9 month old haha).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.

Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...

The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall. (Maybe I should start following my own advice again but then I might not wake up for the baby and wife will give me a real headache ;)

It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....

Like I said we are all different.

Best wishes, good luck & stay as positive as you can!!!!

Eric

Nani, He mentioned that he thinks that they are back to back throughout the day.

Title: Re: My first ever Week in HELL.
Post by Bob_Johnson on Mar 10^th, 2007, 9:26am

Justn, I would not avoid starting Verap. It's not an especially effective med for lowering blood pressure for many folks and many of us have taken the high doses needed to prevent CH without ill effect.

Agree that starting to learn about CH is the next step. I suggest books because they give the most coherent presentation of material.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

------
Also,
http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
=========================================================================
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: My first ever Week in HELL.
Post by Bob_Johnson on Mar 10^th, 2007, 9:35am

Re. the throbbing pain: Over the years several of us have reported this experience. Whereas some CH folks pace about during an attack, I've found it essential to sit as quietly as possible because it helps reduce this throbbing pain aspect of the attack.

Over the years I found this approach helps much: Sitting in a chair which keeps you as upright as possible; learning to find a neutral posture which allows you to relax your muscles as much as possible; breath slowly and moderately deeply. For me, this significantly reduces the throbbing whereas walking, for example, makes for intense "shots" of pain.

Title: Re: My first ever Week in HELL.
Post by Sean_C on Mar 10^th, 2007, 10:26am

Justinn it doesn't sound like classic clusters to me, ie; the duration seems too long (7 hours), thats a near death experience for a clusterhead :(

Also, you wouldn't be capable of functioning at work even if it were to last more than 10 minutes, our pain is that severe.

Keep searching for similar characteristics for your type of headache, print anything you find, and bring it to your nuero.

Good luck,

Sean...............................................

If you do a search for "clusterheadaches" on You-Tube you will see a clusterhead during an attack, that might help you see if its similar to what your having.

Title: Re: My first ever Week in HELL.
Post by JustinAC on Mar 10^th, 2007, 8:19pm

on 03/10/07 at 10:26:33, Sean_C wrote:

Yea, I'm in an episode right now and it's nearing 8 hours longs. The pain is bad enough that I'm damn near blind and deaf and it feels like little explosions are going off in my temple and somebody is jabbing me in the face with a screwdriver. After the first hour or so I get a little used to it and can function a little better. I still couldn't drive a car right now and typing this is taking forever.

Title: Re: My first ever Week in HELL.
Post by Sean_C on Mar 10^th, 2007, 8:49pm

Justin are they stabs of intense pain, maybe lasting a few seconds to a minute each ?

I would say its definately not clusters, you can't get used to the pain Justin, its relentless & unforgiving.

Sean.............................................

Title: Re: My first ever Week in HELL.
Post by TonyG1 on Mar 11^th, 2007, 9:55am

on 03/10/07 at 20:19:46, JustinAC wrote:

Hey Justin -- Really sorry to hear you're having such a rough time of it right now! As Nani stated, some of the symptoms you described seem atypical for CH. (i.e. throbbing and the length of the bouts) Many of us here have what is referred to as 'shadows' after a hit -- A shadow is not quite a headache but more like a threat that another attack is coming and they do tend to linger. As all of us are different, one man's shadow may be another man's Kip 5 or 6. It has been my experience, that this is due to the pain threshold increasing over time. Generally, you have to find what works for you. A couple of questions for you:

1. Is the doctor that did the diagnosis a neurologist?
I would suggest that if he/she is not - get this person to refer you to a neuro who is specialized in Headaches.

2. Did he/she order any types of scans of your head? (i.e. MRI / MRA / CT of your face)

Modified to add:

As others have said, take it one day at a time!

Best Regards,

Tony

Title: Re: My first ever Week in HELL.
Post by kcoaster on Mar 16^th, 2007, 2:40pm

Please see the post I made to this board in 2003. It has now been 5 years without another CH.

MY 2003 POST:
"After looking at the Cluster Headache Survey of 11,000+ sufferers on clusterheadaches.com, which shows that 50% of CHs who took the survey smoke, I think it important to pass on my experience:
I started getting clusters at 20 years old, I was a smoker and when I quit, at age 36, I was smoking 2+ packs a day. After years of trying to get relieve and after visiting the Diamond Headache Clinic in Chicago, I found that Oxygen almost always relieved the headache. I guessed, because Oxygen stopped the pain, that smoking could possibly cause the lack of Oxygen. One of the hardest things I ever did was to quit smoking but I did. Six months after quitting, my clusters ceased. I was 36. I thought I was “cured”.

I had no headaches for 21 years and never thought about clusters when I started smoking a cigar some evenings. Two months after smoking 3-4 cigars a week the clusters returned. My first attack was about 2 hours and a day later, before I was able to get a script for Oxygen, I had a 6-hour bout, relieved for 20 minutes followed by another for an hour.

I my case it took no genius to conclude that I should never smoke again. I quit and within in a few days the clusters ceased again. It’s now been one year without a headache.

Of course I don’t know for sure if there was a, “smoking connection” or if the headaches will come back. I will keep you and your readers informed.

I’m not a doctor and my experience my not benefit anyone but I know the pain and if this letter can help just one person, I glad I took the time to submit it."