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        New Message Board Archives >> 2005 General Board Posts >> The "beast" !!
        
(Message started by: chronicsuffer on Nov 16^th, 2005, 5:55pm)

Title: The "beast" !!
Post by chronicsuffer on Nov 16^th, 2005, 5:55pm

Hello All,
I never knew there was so many of us out there.

I have Cluster Headaches, not just Cluster, but Chronic Clusters. I never get a break from the pain. I had them on the right side at first, but now I get them on both sides. Not at the same time (Thank God!). I get them at any time day or night. I can be any where at any time and boom its there. No warning, no nothing. One minute I'm laughing and feeling great, the next minute I'm screaming with pain.

I've suffered with the "beast" for 12 or 13 years. When I first starting having the pain, I could not imagine what in the world it was. I went and had teeth pulled, but of course that wasn't the problem.

So far Imitrex is the only thing that takes the pain away. I've tried hot and cold compresses (cold makes it worse.) I've tried boiling water with lots of salt and then putting a towel over my head and pan and breathing that. (sometimes it worked and sometimes it didn't) I've tried getting in a hot shower and letting it run on what ever side it was on.( again sometimes it worked and sometimes it didn't.) I'm on medications that is suppose to help prevent them! Yea Right!!

What I want to know is why me or anyone for that matter. I'm 54 years old and a woman. Thought these were made for the men!! )>: Or thats what I was told. 95% of cluster sufferers are men! Then why me??

Are there other women out there too????

Glad you're here for us!!!!!

Jewel

Title: Re: The "beast" !!
Post by Jonny on Nov 16^th, 2005, 5:59pm

Try 02

http://www.mhni.com/faqs_high_oxygen.html

Title: Re: The "beast" !!
Post by JenniferD on Nov 16^th, 2005, 6:06pm

Jewel hon, welcome. Sorry to hear you're here, but glad you're here.
I am a 42 yr old woman, episodic X 20 yrs. Yep, told many years ago it was a man's disease and tried the pan thing, tried the shower thing, was even told by a nurse practicianer to ..and I quote...to eat jalapenos (sp?) before I was properly diagnosed.

You are not alone. Why you? Why any of us? Keep trying meds till you find the combo that works for you. There is a TON of info on here that will help you and your dr find a do-able program. It may not work each time, but keep trying, ok?

wishing you peace
Jen

Title: Re: The "beast" !!
Post by pattik on Nov 16^th, 2005, 6:09pm

Hi Jewel,
So sorry you needed to find this site. Yes, there are plenty of ladies with this condition. The "men only" idea has gone the way of the dodo bird (although, there probably more men then women with this). There is a wealth of info here to learn about. CHeck out all the links on the left of your sreen, and read the Medications, Treatments and Therapies board as well. There are many chronic sufferers who are members here who can help you with your questions. So ask away.
PF wishes to you.
Pat

Title: Re: The "beast" !!
Post by Jonny on Nov 16^th, 2005, 6:10pm

BTW....I was chronic for 30 years, a combo of LIthium and Verapamil (The chronics cocktail) kept 80% of the HA's from ever showing up...the rest i killed with 02. I had my life back!!

Title: Re: The "beast" !!
Post by rextangle on Nov 16^th, 2005, 6:11pm

Welcome aboard Jewel.

You found the right place.
Ask questions, read the med section.

Also, one of our member (Floridian) has compiled this info where you can read about all types of treatments.

http://www.med-owl.com/clusterheadaches/tiki-index.php

And if you haven't gotten oxygen, please do so.
Read about the Clustermasx...

www.clustermasx.com

Good luck,

Rex

Title: Re: The "beast" !!
Post by Redd715 on Nov 16^th, 2005, 8:40pm

Yes Jewel,

You'll find out if you stick around long enough that the beast doesn't discriminate like "they" used to think it did. There are plenty of us women here.

40 year old chronic for at least 22 years. (the more people I run into from my past the longer my history of this damn disease gets)

Title: Re: The "beast" !!
Post by Jonny on Nov 16^th, 2005, 9:11pm

on 11/16/05 at 17:55:57, chronicsuffer wrote:

I'm on medications that is suppose to help prevent them! Yea Right!!

Care to share what you are taking?

Title: Re: The "beast" !!
Post by Charlie on Nov 16^th, 2005, 11:39pm

Welcome to the madhouse but sorry that it took the beast to show you the way. If you stick around, among the nonsense, you'll find lots of ideas and some ways to deal with this horror. Here is the thing that worked well for me. Give it a shot.

Dr. Wright’s Circulatory Technique:

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.

Charlie

Title: Re: The "beast" !!
Post by Beastfodder on Nov 17^th, 2005, 6:17am

Jewel - Ouch - you've had hard few years.

But it sounds like you've probably been through the worst of it now. Information and support are never in short supply here. Finger's crossed that you're on the way to beating the beast and getting relief.

O2 at a hi flow rate works good for my headaches, clusterbusters is a godsend too and last tip - it's useful to keep track of the beasties using a diary.

Title: Re: The "beast" !!
Post by Sandy_C on Nov 17^th, 2005, 8:51am

Welcome Jewel

Yes, it's amazing that there are so many of us. You've come to the right place for information and support. The wealth of knowledge about CH on these message boards is unvelievable. This place has been a literal lifesaver for many of us.

I am episodic, with my very first ever cycle beginning at the ripe old age of 53 - I'm 59 now. So, I'm sort of an oddball (yea go ahead, have fun with that one). And after finding this place, I also learned that it's not just the guys who are "blessed" with the beast, we ladies have them too.

Read all you can here. Ask questions, no question is too stupid, I've learned.

Again, welcome to this crazy family we have here.

Sandy

Title: Re: The "beast" !!
Post by Langa on Nov 17^th, 2005, 9:12am

Hi Jewel!

Welcome to the Family.

Yes, the Beast certainly doesn’t discriminate and loves to torture women as much as men.

I’m an episodic sufferer – 27 years now. In June 2004, I started my usual yearly summer cycle that lasted 10 months. The alternative treatment (HBWR seeds) is the only thing that worked for me as well as 02…02 is a life saver! Also Melatonin has helped a lot of us in decreasing or stopping the night time hits.

Read all you can and ask away – being educated about this illness is the biggest weapon we have as most doctors are clueless.

Hugs,
Langa

Title: Re: The "beast" !!
Post by Shaz on Nov 17^th, 2005, 11:29am

Welcome Jen, and you are not alone.

There quite a few of us women out here too. Luckily I am episodic and not chronic, so at least I get a break. You would have they would have come up with just one thing that only the blokes suffer from ;;D

Am pain free at the mo but am waiting for a referral to my neuro. Listening to a lot of you out there, sounds like O2 is a good one. Definately gonna try and get that sorted for next time.

Never on your own girl.

Shaz [smiley=hug.gif]

Title: Re: The "beast" !!
Post by ghost62 on Nov 17^th, 2005, 12:25pm

Welcome and sorry you are hurtn so much. Yep plenty of CHenz and we love them all. got to listen to these folks here , it is where you will find a fountian of knowledge. Also best support in the world. Oh yea and some of the worst jokes you will ever find. ;;D ;)
Ok mostly from me. [smiley=laugh.gif]
Again welcome and good luck with the battle.

Mike(ghost),(goat)

Title: Re: The "beast" !!
Post by rickyshot on Nov 17^th, 2005, 1:30pm

Yup I am an episodic for 21 years. Life was a living hell for awhile. O2 your best friend. Go to the link print and take it to the doc like I did. This is a great site with plenty of characters that You will come to love as I do. I am a woman and suffer complicated migraines as well as CH sometimes both at the same time for extra added joy. The doc tells me I am one of the worst cases he ever saw. I feel honored NOT!!!!
Hang in there..

Title: Re: The "beast" !!
Post by chronicsuffer on Nov 17^th, 2005, 1:50pm

Thank You All So Much For The E-mails!!

To those of you who use the 02, I'm so glad it works for you! I tried it and it does no good for me.

Like some of you, I hate the thought of going to sleep, but now I worry all the time. Is this going to be a "beast" free day. And if it is, what happens after I go to sleep?

The Nero I'm seeing has really been a life saver for me. Took me being put in the hospital to find him. My own Medical Dr. sent him to see me. When he walked into my room, I told him, "If you don't know anything about Cluster Headaches, then you can just go right back out the door". I'd had it with Dr's who didn't have any idea what they were. He looked over at my roomy and gave her a shit-eating grin and then told me that is what I do. Even though he put me on a medication that helps alot, I still have the "beast". Will it ever go away? Will I have these the rest of my life?

The medication he started me on was 50mg of Amitriptyline. Well the next visit I told him it wasn't working. So he told me, "Jewel, I could go up another 50, but I think we'll go straight to the 150mg instead of trying 100mg, then 125mg. I have to say I've been on this for almost 5 years now and it does help, but like he said, "Nothing is going to make them stop altogether".
I take it at night just before I go to bed. (I still worry wheater or not I'll be awoke with the pain.)

Mine are really bad when the weather changes. I live in Nevada, but it still gets a little cool here in the winter. Spring, I think is the worst. Other times it doesn't matter what I'm doing, sitting around talking, or walking outside, I get them. I don't get any warning either. Boom its there and I'm crying and screaming. And if I don't have the Imitrex, then my poor thighs get a beating. I have to direct the pain some where other than my head. I'm sure all of you know what I mean!!

Again "Thank You" for all your e-mails.

If any of you haven't tried the medication, ask your Doctor about it! I've seen that there is a new med that is suppose to be better than Imitrex. Has any one tried it? Does it work?

Hugs to all of you,
Jewel

Title: Re: The "beast" !!
Post by E-Double on Nov 17^th, 2005, 1:56pm

Jewel,

This is a great resource to know like the back of your hand...print it out and give it to the doc. There are other preventatives that might work better than being on Amitriptyline

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!!! Make sure you have the correct setup!!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

I have recently been using 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=meds;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.

Best of luck!!

Eric

Title: Re: The "beast" !!
Post by sandie99 on Nov 17^th, 2005, 2:23pm

Jewel,

I'm so sorry that you've got ch. But I'm so glad that you've found us! Welcome to the Cluster Family! :)

And yes, you've got lots of clustersisters here! When I was dianosed with ch, my neurologist told me as well that usually men have ch. I've been a clusterhead since fall 2001, but I was diagnosed in 2003.

Best wishes & Pain free days and nights,
Sanna :)

Title: Re: The "beast" !!
Post by thebbz on Nov 17^th, 2005, 9:46pm

So he told me, "Jewel, I could go up another 50, but I think we'll go straight to the 150mg instead of trying 100mg, then 125mg. I have to say I've been on this for almost 5 years now and it does help, but like he said,

Nothing is going to make them stop altogether". [smiley=looser.gif]

I so disagree with this. Never say nothing, ever.
Sorry ,I hate it for you. Episodic being what it is I can't imagine chronic. All the best
jb

Title: Re: The "beast" !!
Post by LeLimey on Nov 18^th, 2005, 4:11am

I'm female and I'm chronic too.. there are alot of us about sadly :-/
Its nice to have you join our little family though, there's no where better for you to be
love
Helen X

Title: Re: The "beast" !!
Post by Carl_D on Nov 18^th, 2005, 3:00pm

Jewel, sorry you had to be here but glad you found us. Some good peeps here and alot of great info. I hope you can find something to fight off the CH soon.

Peace & Vibes,
Carl D