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        Supporter's Corner >> Supporter's Corner >> finally..some understanding
        
(Message started by: Whiterose on Nov 1^st, 2003, 3:39pm)

Title: finally..some understanding
Post by Whiterose on Nov 1^st, 2003, 3:39pm

HI: this is the first time on this site, I started looking for a web site because my husband"s clusters have started again after 5 years, we have been married for 10 years and they told us that they would stop when he got into his late 40's, well he is now 55 and has been in a cycle for almost 4 weeks. When I found this website it felt like a ray of sunshine. I get great comfort from knowing that there are people who understand that I am not having the headaches but the pain of watching him go through this is almost more then I can bare.
Thank you for listening

Title: Re: finally..some understanding
Post by Margi on Nov 1^st, 2003, 4:18pm

Hi Whiterose and welcome. :)

I'm so sorry to hear that your husband's clusters have come back after such a long remission. My husband is 46 and his last remission was nearly three years. Then a six month cycle, and now we're at about 2 and a half years of this remission. That's the blessing as they get older - the remissions lengthen until, hopefully, the cycles never come back. I pray that this cycle isn't a long one for your husband.

Is he on meds? Is he using oxygen as an abortive? It really is the most popular choice here and has quite a high success rate when used correctly.

You're definitely in the right place to find folks who understand YOUR pain, Whiterose. Check out our Family Services Team - the link is at the bottom of my post here. Read everything you can find there and in the buttons on the left here at this website. You've honestly found the best reference for clusters available.

Again, welcome. Pull up a chair.

Title: Re: finally..some understanding
Post by Jackie on Nov 1^st, 2003, 5:01pm

Hi Whiterose and welcome to the group.
My hubby, Blake, is a chronic clusterhead. We've been fighting this battle for years. As tough as it gets life if still manageable and there are good days.
We've finally landed on a good med. combo. and Blake is doing the best ever....especially during high cycle time. We feel blessed.

There's usually someone around....if you need to talk, vent, laugh or cry.....we're here for you and your husband.

Jacks 8)

Title: Re: finally..some understanding
Post by Whiterose on Nov 1^st, 2003, 6:44pm

Thank you for your words of encouragement, I showed this site to my husband and he read your words of understanding and caring. We both shed a few tears .
Pete is not on any meds at this time, over the years we have tried numerous kinds of medication, he also had his sinuses burned to stop the sinus infections. {Which of course we now know that he didn;t have. }Now he won;t even go near a doctor. It is amazing how cluster headaches take over your life, you just live each moment from one headache to the next. I continually watch Pete's eyes for any sign of redness or swelling because I know that another one is starting and I am helpless to do anything about it.
But thanks to this site I now have some place to go to vent.. Thank you all

Title: Re: finally..some understanding
Post by Prense on Nov 1^st, 2003, 9:10pm

on 11/01/03 at 18:44:58, Whiterose wrote:

Now he won;t even go near a doctor.

Chalk it up as lessons learned...educate yourself, then when you see a doc concerning this you will know if he/she is full of shit or not. ;;D

Seriously, the longer you wait without trying something, the less time you will have to find something that works. You only have the duration of his cycle to find something...after that, you have to wait until the next cycle.

on 11/01/03 at 18:44:58, Whiterose wrote:

It is amazing how cluster headaches take over your life, you just live each moment from one headache to the next. I continually watch Pete's eyes for any sign of redness or swelling because I know that another one is starting and I am helpless to do anything about it.

It doesn't have to be that way...hopefully you finally make some progress by finding something that works... At least then, you will feel that you have some control.

Regards!
Chris

Title: Re: finally..some understanding
Post by Whiterose on Nov 1^st, 2003, 11:03pm

You are so right Chris. After I posted my last message I spent along time reading everything I could and writing down lots of information because I know that if I don;t do this quickly it will be to late for this cycle.
I have decided that I am going to make Pete a doctors appointment and this time I will go in with him and talk to the doctor myself and show him all the information I have gathered and the things I have learned about .
Thanks to this site I know that there are things that will help, The last doctor told us there was nothing we could do but wait it out.. Now I can tell him he is full of shit and I have the ammunition to back it up
Thanks
Frances

Title: Re: finally..some understanding
Post by Prense on Nov 2^nd, 2003, 12:14am

on 11/01/03 at 23:03:04, Whiterose wrote:

and this time I will go in with him and talk to the doctor myself and show him all the information I have gathered and the things I have learned about .

Good! Try to be suggestive with the doc and not demanding. It's hard, but you need to be tactful to be successful. Some docs are quite welcome to info...others are not. If he/she isn't, then time to get a new one.

Hope it works out for you both!

Chris

Title: Re: finally..some understanding
Post by Jackie on Nov 2^nd, 2003, 6:09am

Frances,
Now you're cookin'.... :D
Study and learn everything you can. There is a wealth of information here and on the OUCH site. Knowledge is power. The better you all are educated about this malady and the treatments/meds./home remedies the better your chances are for finding relief.
You all can have a life. You don't have to sit and wait for the beast to attack. Prepare to fight him and you all can kick his ass.... ;;D
Going to the doctor with hubby is a great idea. When they are going through really hard times they are tired, in pain, beat up and don't always grasp everything. I've always gone with Blake (especially during the really bad times)....it helps. Prense is giving you good advice on handling the doctor. Like he says.....if he/she doesn't listen then find a new one. There is one out there that will listen and help you all.
OK...I'll hush now so you can get back to your reading...there's a lot to study. If you have questions just ask. There is someone that has 'been there'/'done that' and will be happy to help.

Good luck.....

Jacks 8)

Title: Re: finally..some understanding
Post by Margi on Nov 2^nd, 2003, 10:54am

Hi Frances,
I agree with the advice you're getting here. Finding a cluster knowledgeable doctor is the best defense. There is a list of them over at www.clusterheadaches.org, first menu on the left above the map (Recommended Doctors) It's organized by area, and I see you live in Ontario (but your pin on the map is in Quebec?). I believe there are a few in your area - but you may need a referral from your GP. Most GP's are, at best, only vaguely familiar with clusters, so really push for a referral to a neuro, ok?
For years, my husband was "allergic to doctors", too - and I didn't blame him a little bit. After being treated for sinus infections, allergies, given narcotics that don't work, he finally just planted his feet and said 'enough!'. So, we went to battle without meds for about 10 years. Items in our arsenal included:
**ice packs for the back of his neck (or frozen peas/corn if not available)
**gravol to help him get through the night (Shoppers Drug Mart has this in generic form, much cheaper!)
**water, water, water - it did break a cycle for him and continues to make things more bearable when he's not on meds
**welder's oxygen - this was the most amazing of the 'natural' treatments for him. He can abort 80% of his attacks if he catches it early enough.

So, until you can get him into the doc, do try these things, ok? Please feel free to write to me directly at moxie_miss@hotmail.com if you need more specific details of these med free helps.

Margi
Calgary, Alberta

p.s. once we did get in to see a neuro, he put Mike on a prednisone burst for 17 days, then onto verapamil and lithium, with Imitrex inhalers as an abortive. We already had the oxygen, so we didn't take the prescription for the medicinal kind, but it is available if you need it. The meds do carry some side effects, and we're not sure that they didn't extend his cycle even though the attacks were less in intensity. Not trying to scare you away from the med route, just letting you know that this is what happened for us. (It did definitely make Mike feel better to finally be acknowledged by a medical professional that he DOES have something that has been defined, finally - and that this isn't just a nasty sinus infection ::))

Title: Re: finally..some understanding
Post by cathy on Nov 2^nd, 2003, 4:14pm

Francis...what a great bunch of people here you really will find true friendship and support here, you have done right by gaining knowledge and preparing for your doctors appointment so all thats left to say is........good luck with the doctor, welcome to the board..PF vibes to Pete and let us all know how you both get on!!

Cathy :)

Title: Re: finally..some understanding
Post by TxBasslady on Nov 3^rd, 2003, 1:42am

;)
Hi Frances...Welcome !!

I can't add to the info already given. I can, however, vouch for the love and friendship you will find here.

Always someone here, 24/7.

This board is a Godsend. And the best folks in the world are here. Please stay and witness for yourself what I have experienced.

Jean

Title: Re: finally..some understanding
Post by jmc1106 on Nov 4^th, 2003, 10:24am

Dear Whiterose, I was also so happy to find this group about six weeks ago. My husband had only had one other really bad cluster cycle, that was 18 months ago, and we never were sure what it was. He started up again, and this time it was much worse. I did take info from this site into our doctor, and she was very gracious, said the info was great, and took some of the advice given, regarding medicines. It took three weeks to find out what worked, but that got us through the rest of the cycle, and then it was over. Now we are prepared for the next cycle. We found that Imitrex worked great as an abortive, and we are stocked up with some pills and a couple of injections (and I've learned how to give a partial dose so it's less expensive--and it knocks the cluster down completely in about 8 minutes). Now that we have the abortive part figured out, next cycle, I would like to try and find a preventative that works for episodes, and maybe try the oxygen. Hopefully your husband's cycle is almost over, and then you all can relax for awhile. It is amazing the way these things can take over your life--and so wonderful to have the support of other people in the same boat.

Jan