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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> looking for support, from others
        
(Message started by: tazreenie on Mar 8^th, 2005, 12:14pm)

Title: looking for support, from others
Post by tazreenie on Mar 8^th, 2005, 12:14pm

HI I searched on web for cluster headache support and found this page, wow it was great reading some story's of others with clusters. Last night I had a terrible one and thought I was going insane, or maybe it was that I hoped I would go insane anything to get rid of the pain. Today it hurts but not throbbing, course it may not hurt as bad because I am on tons of meds. Just want some support from others who know my pain, my family is not supportive AT ALL .

Title: Re: looking for support, from others
Post by nani on Mar 8^th, 2005, 1:06pm

Hi taz...welcome and I'm sorry you're here. If you have cluster headaches, this is the place that has tons of info and support. Tell us more about yourself. Have you been diagnosed? Are you using any meds to help you? Look around the site here and at the OUCH site (links at left) to see what others have found success with. Good luck and pain free wishes, nani

Title: Re: looking for support, from others
Post by lionsound on Mar 8^th, 2005, 1:09pm

Hello tazreenie and welcome!!!!

WE understand what you are going through and I swear I've never found a more supportive place.

I'm sorry you are suffering and you are not at all insane.....
[smiley=hug.gif]

be sure to read, read , read around this place and ask questions.

What meds have you tried? Are they helping?

Be well and Pain free,
lionsound

Title: Oh , Man your not alone!!!!!!!
Post by snook on Mar 8^th, 2005, 1:32pm

:-* :-* :-* :-* :-* I am the wife a ch and since i dont suffer persay I do understand the feeling of being alone when others dont understand. As Im sure others have told you there is a weallth of knowledge on this site along with sooooooooooo much support, not only for the medical aspect but the warming of the heart. I want you to know chs like nani , gater , and soooooo many more are always here for you!!!!!!!!!!!!!!!!!!!!!! Im Snook my husband is a ch and BOY we have been through so much together understanding this BITCH we call chs...... It took him a long time to even want to get on this site he said it depressed him, now me Ive been leaning on the goodness and pure LOVE that these brave ,giving human beings for awhile and I hope you do to . God bless your on my pray list, AND YOUR NOT ALONE MY FRIEND SNOOK

Title: Re: looking for support, from others
Post by tazreenie on Mar 8^th, 2005, 2:01pm

Thanks yes I have been looking all around the links, and reading story's. It is nice to know I am not alone, on the otherhand, I always wished people could feel my pain, now I am sad they do, it is terrible pain to go through, I hope they do find a cure for all of us.

Title: Re: looking for support, from others
Post by maffumatt on Mar 8^th, 2005, 6:21pm

Welcome to the club, my friend.

Im pretty new here too and if you read the old and archieved posts you will learn more than you probably wanted to know about CH. I know that I have. One thing about your post that I have found to be very interesting is that you talk about the euphoria that you feel after an attack. I get these feelings too, I havent seen much posted about this topic. I wonder how many other clusterheads feel this way too?
Matt

Title: Re: looking for support, from others
Post by Kris_in_SJ on Mar 8^th, 2005, 8:30pm

Hi Taz,

The euphoria you and Matt feel when a HA is over, is exactly because the HA is over. You survived another one!

Welcome to the family,

Kris

Title: Re: looking for support, from others
Post by RichardN on Mar 8^th, 2005, 11:41pm

Hey Taz and Welcome

What are you using to abort or as preventative?

Have you taken the cluster quiz yet? How'd you do?

How many has per day/night/week do you have?

How long have you suffered from our common beast?

There is much help/info/sharing/caring here from people who truly understand your pain.

Be safe, PFDANs

Richard

Title: Re: looking for support, from others
Post by jokrs2 on Mar 9^th, 2005, 1:32am

Hi Taz. Sorry about your pain.
My dictionary reads as follows:
Euphoria - (1) a condition that exists while not in a Cluster Headache or Shadow. (2) finding out that someone else I know who has head pain doesn't have them.
Wishing you pain free days & nights.
Joe 8)

Title: Re: looking for support, from others
Post by tazreenie on Mar 9^th, 2005, 10:23am

Thank you this is the best website, I feel better just knowing I don't suffer alone. I guess misery does love company. Unfortunately, I had my first cluster April 2004 I thought I was dying and was taken to the ER, they gave me a pain shot, and told me it was more than likely a cluster headache. I saw my regular physcian for a follow up and he confirmed it was clusters, I get them plus I have tension migraine headaches also, There has not a week that has gone by that I have been pain free. I am usually either having a throbbing migraine, a cluster or feeling drugged and groggy cause I have pain meds in me to deal with the pain.
I take atenolol , amitriptyline for preventative meds, Butalbital for the onset of headache. I take vicodin for the pain along with a couple muscle relaxers cyclobenzaprine.
yes, I took the cluster quiz, I dont' know why, like I said i have already been diagnosed with clusters, I guess wanted to confirm again. LOL

Title: Re: looking for support, from others
Post by seasonalboomer on Mar 9^th, 2005, 10:37am

Taz,

Glad to hear you found the site. I agree -- it is great to be surrounded by those who really "get it". Or, in this case "got it too".

So now that you're here it's a good time to set some goals. The first one is to read up all you can about the meds you're taking and compare that with information you'll find on the site to narrow down what is effective and what is simply drugging you out. Many others who have gone the med route can give you some feedback on some of those you listed. But, I think they'll agree, try to find that which is effective and trim out that which is overlap and counterproductive to your quality of life. In the end it is about rising up, between hits, and living your life as fully as possible, as intact as possible, and retaining that which you are made of. There are really knowledgeable folk on here in this regard -- tap there knowledge.

Title: Re: looking for support, from others
Post by tazreenie on Mar 9^th, 2005, 10:56am

Thanks for your support, goals huh it has been such a long time that I have thought about much else, only the pain, but yes you are right I need to live life when I can, lately I have been scared to even do anything I afraid where I might have an attack.
So thanks for the words of encourgement !

Title: Re: looking for support, from others
Post by E-Double on Mar 9^th, 2005, 12:37pm

Stay as positive as you can and have meds stockpiled and ready for battle if/when needed.

Life goes on ya just need to live it!

Took me a long time to stop questioning the "Beast" and to get motivated to start living.

I'm a Special education teacher/Behavior analyst and run home schools for developmentally disabled toddlers.
I go from house to house all day and have to teach, counsel, and train. It gets hectic but I have learned to never leave home without my meds regardless how I feel(sometimes feel great....then BAM!)

Keep your chin up and remember... "IT IS WHAT IT IS" so breathe and try to live to the best of your abilities.

You also may want to research some different treatment that could possibly help with th CH.....A lot of the meds you listed might take you down a notch yet might cause rebounds or not help at all.....

Click on this!>>>>

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

KNOW IT AND EDUCATE YOUR DOCTORS WITH IT!!!

Wishing you the best and you can drop a line to this guy if ya like.

Best,
Eric

Title: Re: looking for support, from others
Post by lionsound on Mar 9^th, 2005, 12:38pm

on 03/09/05 at 10:23:02, tazreenie wrote:

There has not a week that has gone by that I have been pain free. I am usually either having a throbbing migraine, a cluster or feeling drugged and groggy cause I have pain meds in me to deal with the pain.

I've said this same exact thing...my head is multi-talented too.:)

You might want to discuss some of those meds again with your doc....that combo doesn't seem to be helping you..you don't seem happy about it... and you didn't list triptan abortives, like imitrex that seem to stop the HA.....not just the pain in it's tracks.

Oxygen is good too (see link on vertical bar on left) becasue it is not a med and works more than half the time for me for clusters and migraines. The triptans may work for both as well.

feel free to IM me if you would like....

be well,
lionsound

Title: Re: looking for support, from others
Post by tazreenie on Mar 9^th, 2005, 1:11pm

Yes, I have a doc appt. tomorrow, so I am bringing up the oxygen, but yes I have tried imitrex didn't work. Yes, I definately hate all the meds, it is such a pain to keep them straight. Triptan is a new one I have never heard of I will ask about that too. Thanks so much

Title: Re: looking for support, from others
Post by E-Double on Mar 9^th, 2005, 1:34pm

If you have tried imitrex then you are familiar with triptan......It is the family of meds........

http://www.neuroland.com/ha/triptan.htm

What form of Imitrex did yuo use?..tablet, Nasal Spray, injections???

Title: Re: looking for support, from others
Post by tazreenie on Mar 9^th, 2005, 1:40pm

tablet.
I am on atenolol and amitriptylne for preventatives.

Title: Re: looking for support, from others
Post by Gator on Mar 9^th, 2005, 2:38pm

Pills generally take too long to be effective abortives for CH. Many people who report that imitrex pills are ineffective find that the injectible form works quite well and very quickly. Ask your doc for a sample Stat Dose kit. Try the injection for free before spending money on it. Don't fear the needle. I really doesn't hurt and even if it did, the prick of the needle doesn't compare with the burning/boring pain of CH.

I use the vials and a .5cc 30 gauge short needle syringe. Don't feel a thing except sweet relief in 5 to 7 minutes.

Title: Re: looking for support, from others
Post by lionsound on Mar 9^th, 2005, 2:41pm

sorry i wasn't that clear about the triptan thing.

E-Double is right....it's just a class of meds and imitrex is one of them.

The tablets don't do anything for me anymore...I use the imitrex injection..works very fast.

Title: Re: looking for support, from others
Post by kissmyglass on Mar 9^th, 2005, 5:01pm

Atenolol is for blood pressure.
Vicodin is probbly making your head worse, not better.

good luck!!

Kev

Title: Re: looking for support, from others
Post by Dangitboy on Mar 9^th, 2005, 7:44pm

Hi Taz,
So sorry to hear that your having CH's, I fully understand all that you descibe. We will be your support here. Hang in there, the only good thing about these CH's is, they will cycle off, when, who knows, but they will, trust me.

Title: Re: looking for support, from others
Post by RichardN on Mar 10^th, 2005, 12:58am

Taz

You mentioned Atenolol. When my wife found this site 2/o2, I had been through a year of testing and meds for the headaches. First my doc prescribed Vioxx . . . seemed to help a little so I continued . . . has got worse . . . .was concerned about some things I had read about Vioxx and he switched me to Atenolol . . . "seemed" a little better . . . has got worse . . .increased dosage . . . seemed better for short time . . . has got worse . . .. increased dosage again.

This site gave me a name-for-the-pain and shortly thereafter, I had the worst (still holds the record) ha I ever had. Next day I took info from this site and demanded Verapamil and 02 . . . Especially because at the time on the med info Atenolol wasn't even listed and it obviously wasn't doing the trick for me. He started me low, and I didn't have my first PF day til I hit 240 mg . . . got as high as 360mg . . . now take 120mg as maintenance dose and 02 as abortive.

The 02 is WONDERFUL for those of us it works for. I can't take triptans because of high cholesterol and arterie blockage, so 02 is my only abortive . . .. and IT WORKS!

If Atenolol has worked for anyone here re CH, please respond . . .. especially since Taz is seeing her doc tomorrow.

GET SOME OXYGEN (15lpm regulator and non-rebreather mask)

Keep us informed,

Be Safe, PFDANs

Richard

P.S. Prior to leaving this area, the above doc returned my cluster material and, responding to my improved condition . . . "guess we'll have to blame it on the Verapamil" . . . true story.

Title: Re: looking for support, from others
Post by maureen on Mar 10^th, 2005, 11:34am

Welcome

If support is what you need this is the place for you!
People here are wonderful, many of us have families and friends who just don't get it as well. Some consider this thier second family, if only we could trade some of our non understanding family members with some of the wonderful supporters on here.
I hope your Dr appt goes well, I would insist on the 02. Seems alot of Drs like to hold out on perscribing this to many sufferers, that we still are trying to figure out why.

Good luck wishing you PFDAN'S
Maureen