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        New Message Board Archives >> 2004 Posts >> I love it here.  Thank you.
        
(Message started by: RobHealy on Aug 4^th, 2004, 12:16am)

Title: I love it here. Thank you.
Post by RobHealy on Aug 4^th, 2004, 12:16am

Thanks All, for your words on my topic in the H/A forum :)

Been to many health professionals over the years, GP, ENT, Neuro/HA Specialist. Had the CT Scans and MRIs with radioactive contrasting. Been perscribed Sansert, which worked a treat to prevent despite the fogginess and vile long-term side effects (which I never experienced due to brevity of perscription). Also had Imitrex injections which never aborted and actually exacerbated the headaches.

My willingness to see health care professionals came to a close after constant mis-diagnosis for clusters and their treatment along with a whole run-around for an obviously unrelated ankle problem. (Took a vascular surgeon to tell me that swelling was due to cartilage loss rather than blood flow - even after seeing a rheumatologist and podiatrist.)

The physical pain in my head, neck, sinuses and eye is something I can partially block out and almost live with. Not to mollify matters here, but I've always been known as the guy in my group who could "take a punch", I'm also heavily tattooed and dealing with these for the past 12 years (aside for a year of "remission") plus having the onset as a child, I think you learn to deal with such things as pain.

I'm not dismissing the pain in any way, it's obviously rousing me from sleep, wracking my entire body from the inside out with tension and fear that I've got to explain the blood red eye, puffed out forehead and constant tissue snatching to co-workers and friends who always say, "Can't you just take a Tylenol?" What really irks me about these things is how I almost feel violated by the way they've been coming on when they feel like it. It puts a completely unwanted damper on everything. Energy level, physical adroitness and just simply the "routine" of life that's so important to me are vanquished.

So in short, I thank you all for listening. I was really just looking for someone who could say they've experienced some of those "sympathetic" symptoms and what they might've done to ameliorate them.

My best wishes to all for a reduced pain or pain-free Summer.

-Rob

Title: Re: I love it here. Thank you.
Post by Jimi on Aug 4^th, 2004, 12:22am

Sorry you had to join this man's army, but welcome and I hope you stay awhile. :)

Title: Re: I love it here. Thank you.
Post by Carl_D on Aug 4^th, 2004, 12:31am

on 08/04/04 at 00:16:05, RobHealy wrote:

What really irks me about these things is how I almost feel violated by the way they've been coming on when they feel like it. It puts a completely unwanted damper on everything. Energy level, physical adroitness and just simply the "routine" of life that's so important to me are vanquished.

So in short, I thank you all for listening. I was really just looking for someone who could say they've experienced some of those "sympathetic" symptoms and what they might've done to ameliorate them.

Rob, very well put!!!
Have had unsympathetic family, friends - even some Doc's (like THAT ever happens anymore, HA!)
As far as how most of us deal with it?
We came here and found each other.
Glad you found us man. Now you don't have to suffer alone.

Peace,
Carl D

P.S. - Have you ever tried o2 as an abortive?

Title: Re: I love it here. Thank you.
Post by RobHealy on Aug 4^th, 2004, 1:45am

Hey Carl,

Never tried pure O2 as the cost was prohibitive. Can only say that vigorous exercise during an attack has helped me. At one point in my life I deduced that this may have been due to increased air intake (although I know oxygen is one of the lesser constituents of the atmosphere, I figured you up the CFM, you take in more O2)

I abandoned that train of thought when I thought about how you're actually breathing in heavily because of the body's rapid depletion of oxygen from the blood. Also, these days it seems I can come home from the gym after a super punishing weight workout and have a headache within minutes of being at rest.

It's all so strange... I read over and over how Clusterheads are meticulous record keepers (seems my headache tracking has been the ONLY thing I've kept records of in my life), yet at times, these things defy convention.

Thanks very much for the warm welcome :)

Regards,
Rob

Title: Re: I love it here. Thank you.
Post by Kevin_M on Aug 4^th, 2004, 2:18am

Rob,

I had read you saw a number of different health care professionals but none offered oxygen as a treatment? .
Preventatives? Any script for that, you have said the Sansert was a short span of use. Still searching?

just some questions

Kevin M

*edit* also, you mentioned being mis-diagnosed with clusters, what were these doctor's diagnosis?

Title: Re: I love it here. Thank you.
Post by BlueMeanie on Aug 4^th, 2004, 2:56am

Welcome Rob !

From what I gather, it looks like you're a typical Clusterhead. Sorry to hear Imitrex doesn't work for you. It has a pretty good success rate for most of us. Definately give 02 a try. Copy the oxygen info page to the left of this screen. If I where you I'd think again about going back to a Neuro to give the 02 a try along with different prevents & aborts. Sansert is outdated for CH's. Sending PF vibes your way.

Title: Re: I love it here. Thank you.
Post by kimh on Aug 4^th, 2004, 3:34am

Hey Rob,

Gotta echo the above posts regarding the o2. It's my new best friend.

Onset for me was childhood too. What a long strange trip it's been. A lot of trial and error, a lot of dump-the-neuro and start all over again, and just overall craziness.

Try the o2 if ya can - read on it here. Also, i have been using maxalt mlt 10 dissolving pill. If i take it right away and hit the o2 it helps enormously.

pf wishes :)

Title: Re: I love it here. Thank you.
Post by Charlie on Aug 4^th, 2004, 4:47am

Quote:

At one point in my life I deduced that this may have been due to increased air intake (although I know oxygen is one of the lesser constituents of the atmosphere, I figured you up the CFM, you take in more O2)

Rob:

Exercise has to do with blood and you'll find many posts in the archives that relate to this. There are even posts that bear this out. It seems that just a little redistribution of blood can work. This is a technique that worked well for me:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Through the following link you will find a letter written by a fellow cluster headache sufferer that is the best of its kind to help explain these attacks to families, friends and coworkers. It's author encourages copying. It's well worth it.

uk.org/ch/note_colleagues.cfm

Good luck and I'm glad you found a home here. Careful! It's addicting.

Charlie

Title: Re: I love it here. Thank you.
Post by Ree on Aug 4^th, 2004, 6:43am

Welcome Rob... I love it here too. My husband is a sufferer going on about 20 years... We are truly a family. There is a wealth of information. Read until ya turn blue. God bless and again Welcome..... Love to you ree

Title: Re: I love it here. Thank you.
Post by Jeepgun on Aug 4^th, 2004, 9:11am

Welcome, Rob. So sorry to hear that you're suffering... I dearly hope you are able to find some kind of relief. In any case, as others have said, you no longer have to suffer alone.

-Frank

Title: Re: I love it here. Thank you.
Post by Big Dan on Aug 4^th, 2004, 9:37am

Hello, Rob... welcome to the machine.

... hate that you had to find us, but it's nice to know that when you need something, there it is, calling you in.

Learn all there is to learn about this affliction, and share what knowledge you have about it with others and new folks... it's the only way this machine works.

Keep the gears lubed.

-Big Dan

Title: Re: I love it here. Thank you.
Post by Jonny on Aug 4^th, 2004, 6:18pm

on 08/04/04 at 00:16:05, RobHealy wrote:

, I'm also heavily tattooed

Prove it.....LMMFAO ;;D

Welcome aboard, Bro!

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

Title: Re: I love it here. Thank you.
Post by Superpain on Aug 4^th, 2004, 6:37pm

Are you an english major or something?
I consider myself as having an extrordinary vocabulary, but your sending me to the dictionary on every other paragraph! :-[

It's very common to get hit after exercise or times of stress.
Ironically for many of us stress keeps the HA away, but then afterwards BOOM!

For instance, I NEVER get hit at work, but within 45 minutes after leaving work I get hit HARD.

Title: Re: I love it here. Thank you.
Post by thomas on Aug 4^th, 2004, 6:39pm

[quote author=Superpain link=board=general;num=1091592605;start=0#12 date=08/04/04 at 18:37:53]Are you an english major or something?
I consider myself as having an extrordinary vocabulary, but your sending me to the dictionary on every other paragraph! :-[/quote]
You tryin' the alternative therapy, bro? ;;D

Title: Re: I love it here. Thank you.
Post by jhammer on Aug 4^th, 2004, 6:53pm

on 08/04/04 at 01:45:30, RobHealy wrote:

It's all so strange... I read over and over how Clusterheads are meticulous record keepers (seems my headache tracking has been the ONLY thing I've kept records of in my life), yet at times, these things defy convention.

lol...funny you mention it.

I don't balance my checkbook but I can tell you the exact time, date, severity, and duration of every headache I've had for the past 4 months ;)

Wish I didn't have to say this...but welcome aboard!

~Jake

Title: Re: I love it here. Thank you.
Post by IndianaJohn on Aug 4^th, 2004, 6:56pm

Welcome aboard brother. I've been here only a short time and have found that we are all brothers and sisters here. The beast just doesn't discriminate.

I was misdiagnosed for years too. From sinusitus to TMJ. Even wore one of those goofy contraptions in my mouth at night for a week!

Like Superpain, stress helps keep mine away, I rarely get them at work and then I get home and wham.

Learn what you can. I have learned an incredible amount in the short time I've been here and am still learning.

Best Wishes

Title: Re: I love it here. Thank you.
Post by john_d on Aug 4^th, 2004, 7:15pm

Wow, all the earmarks of a true clusterhead.

Welcome.

Title: Re: I love it here. Thank you.
Post by Jonny on Aug 4^th, 2004, 7:19pm

on 08/04/04 at 19:15:35, john_d wrote:

Wow, all the earmarks of a true clusterhead.

Welcome.

You get CH in your ears, Bro? ;;D.....LOL

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

Title: Re: I love it here. Thank you.
Post by Superpain on Aug 4^th, 2004, 7:29pm

on 08/04/04 at 18:39:57, thomas wrote:

You tryin' the alternative therapy, bro? ;;D

No... Not for yrs now. Although I would and probably will! But I guess I need to wait tilll I'm in cycle again to justify it. ;;D

I just came up short on "mollify" & "adroitness". [smiley=huh.gif]

XOXO,
Superdummy

Title: Re: I love it here. Thank you.
Post by Leesa on Aug 4^th, 2004, 7:48pm

Rob, sorry your here hun but "Welcome Home Bro" Sitck round for a while it gets intresting round here when "snake oil sales men" season opens thats when the REAL fun begins! ;) This is the BEST care anywhere!! If ya need anything let us know.
Leesa, CH supporter since 2001 ;;D

Title: Re: I love it here. Thank you.
Post by john_d on Aug 4^th, 2004, 7:53pm

on 08/04/04 at 19:19:30, Jonny wrote:

You get CH in your ears, Bro? ;;D.....LOL

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

no , but I seem to remember that I have tried to get to the pain through my ears, didn't work. :P

edit
I changed my smiley

Title: Re: I love it here. Thank you.
Post by Gator on Aug 5^th, 2004, 8:38am

Welcome aboard, bro. Sorry you have a reason to seek us out, but damned glad you found us. Childhood onset? That's rough. No abortives? That's rougher.

There are a lot of meds that work for a lot of people these days, though I have to admit most don't work for me. I am left with aborting those I can (with O2 and Zomig Nasal Spray) and riding out those I can't. So what meds have you tried?

Here is a document Superpain posted that has a lot of good info on different preventative, transitional and abortive therapies as well as surgical alternatives. Print it out and take it to your doc. Might help.

http://www.future-drugs.com/admin/articlefile/ERN020304.pdf

Lots of good info and even better support available here. Stick around. It can get wild and wooly, so wear your thick skin, but remember it's just a bunch of tired hurting people venting and having a little fun.

Again, welcome.

Mike

Title: Re: I love it here. Thank you.
Post by E-Double on Aug 5^th, 2004, 8:47am

Seems that you have pledged and been initiated into the toughest most loyal fraternity around!!
Welcome aboard and you certainly have found a group that can change your life. Certainly has done so for me!!

I wish you the best of luck in your quest and always a shoulder to lean on and ear to vent.

Hang in there!!

Eric