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        Supporter's Corner >> Supporter's Corner >> I feel so helpless, can anyone offer advice?
        
(Message started by: wifeofsufferer on Apr 1^st, 2003, 11:40am)

Title: I feel so helpless, can anyone offer advice?
Post by wifeofsufferer on Apr 1^st, 2003, 11:40am

Hi, my name is Jaine and im convinced after reading all about Cluster headaches, that this is what my husband is suffering from, they have only just started about 2wks now and with no insurance he wont go to the Dr.s he thinks this will eventually pass, although what ive read up on so far it looks like it could last a lot longer. We have only been married a year, i am English and came out here to be with him after meeting him on the internet 3yrs ago, i love him dearly and feel so helpless when he is in so much pain as he has a high pain threshold but this he finds intolorable! if anyone can offer any advice on any over the counter meds ( i know he needs to see a Dr. and i hope ill get him there eventually) or if anyone would just like to e-mail me with their own thoughts and to have a chat please feel free, being new to this country and not working i get very lonely so having something in common with another wife of a sufferer would be good therapy for us :)

Title: Re: I feel so helpless, can anyone offer advice?
Post by CJohnson on Apr 1^st, 2003, 1:11pm

You will discover that cluster headaches affect everyone somewhat differently. That which brings relief to some will not bring relief to others. With that said, I offer you the following.

1. The only over the counter med which has ever brought me relief was ny-quil, and that was only one night. Before I knew what these things were, I drank half of a bottle of ny-quil hoping to get a good nights sleep. Before I new it, I was asleep. I slept through the night. It didn't do anything when I drank the next half of the bottle the next night. It was good for one night of sleep, though.
Oh yeah, Dramamine worked once, as well.

2. I have discovered that if I go for a jog/run as soon as I feel one coming on, the duration and severity of the attack is significantly reduced. Before I discovered the running thing I would.... I don't even want to talk about it. Now, almost every time, the attack lasts no more than 30 minutes, usually 10 - 15 minutes and doesn't get worse than kip-7 on the kip scale. Of course this will not work for everyone, I just happen to be one of the fortunate ones who get relief from vigorous exercise.
I have tried lifting weights and doing pushups and that sort of thing to generally positive effect, but running works best for me.

3. Breathing pure oxygen brings most of us relief. The process is somewhat tricky, but you should be able to learn everything you need to know about it from this site. Jonny is the O2 expert, therefore I would check with him.

4. Speaking as a husband, I know that when I am in a pain cycle, I am suffering enough for the both of us. I appreciate that my wife is compassionate and willing to do anything to help me, but really, there is nothing she can do to help during a headache. I get them almost always during the night, and I would rather her not wake up at all when I get out of bed. However, I really appreciate it that she understands how weary I can become during a cycle.

Good luck, and welcome to the U.S.A.!
-Curtis

Title: Re: I feel so helpless, can anyone offer advice?
Post by cathy on Apr 1^st, 2003, 2:23pm

Hi wifeofsuffer.....sorry your having a bad time I don't know of any over the counter meds which will help with a clusterheadache...has your husband actually been professionally diagnosed with CH...if not thats the first thing he should do...get him to see the doctor. If it is CH then oxygen can be a lifesaver for a lot of sufferers.

If you want to email me or chat feel free Im from the UK I live in Cambridgeshire, good luck for the future and keep us posted.

Cathy :)

Title: Re: I feel so helpless, can anyone offer advice?
Post by Ree on Apr 3^rd, 2003, 9:22pm

Hi there Don't be lonely... We are here for you... Here in the Cluster Headache world we know how you feel to see your husband in pain... and watch him suffer and not be able to do anything for him is the most gut wrenching helpless pain.
Make use of the buttons on your left... Have him take the quiz... print out some of the stuff here and take it to your doctor... I think the meds that they make for menstral cramps are the strongest on the market but I have no idea if they work for CH... They dont work for my issues with Migraine... He needs a neurologist for sure... and one that knows Clusters good luck and keep us posted on your progress... peace to you Ree

Title: Re: I feel so helpless, can anyone offer advice?
Post by firebrix on Apr 4^th, 2003, 3:12pm

You're not alone babe!
We've all felt like that at times.
Best thing to do is empower yourself with information. Learn as much as you can about CH so you can help when well intentioned doctors mistakenly throw one drug after another at the problem and nothing works. Here, you'll learn what does and usually doesn't work and can help both a willing doc and your man. How I wish I'd known of this site when Mopar started getting CH.
Your husband needs to see a neuro.This is step one.
Ask what your partner would like you to do when he's getting slammed. Some men do not want their loved ones to see such pain and hide; we have to show them that we are tough enough to take it and willing to help in any way we can. That we are there for them throughout. We worked out a "system" and stick to it til it no longer works then make up a new one.
Join and read everything in the OUCH library too. Heaps there.
Let me know if I can help. Anytime.
Hang in there. Be Strong.
Wishing him PFDAN and you peace.
firebrix

Title: Re: I feel so helpless, can anyone offer advice?
Post by traym4 on May 15^th, 2003, 1:50am

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HELLO EVERYONE,

MY HUSBAND HAS BEEN SUFFERING FOR ABOUT 2 YEARS NOW. WE HAVE TRIED SO MANY DRUGS BUT WITH NO REAL POSITIVE RESULTS!!!!!!! CURRENTLY HE IS ON VERAPAMIL 240MG, METHERGINE.06MG, ZONEGRAN200MG, AND ARITOCORT12MG. BEFORE THE DOC HAD HIM START METHERGINE HE WAS ON AMERGE 2X A DAY. WHICH SEEMED TO LESSEN THE INTENSITY OF ATTACK FOR ABOUT A MONTH AND NOW THEY ARE BACK STRONG. DOES ANYONE ELSE GET ATTACKS ALL DAY LONG???? THE CYCLE HE IS CURRENTLY HAVING I THINK IS THE WORST YET. I HAD NO IDEA IT COULD GET ANY WORSE. I FEEL SO HELPLESS AND I SEEM TO BE CONSUMED WITH FINDING SOME CURE VIA THE INTERNET. HE HAS A GREAT DOCTOR WHO HAS DONE SOME GREAT RESEARCH THAT HAS BEEN PUBLISHED ON CLUSTER HEADACHES BUT I DON'T TRUST ANY DOCS AFTER WHAT WE HAD TO GO THROUGH TO GET A DIGANOSIS. ARE THERE ANY OTHER DRUGS ANYONE HAS HAD RELEIF WITH?? SURGERIES?? I HOPE TO HEAR FROM SOMEONE SOON.

TRACEY

Title: Re: I feel so helpless, can anyone offer advice?
Post by ch_nic on May 20^th, 2003, 9:42am

Try applying heat pack on the pain area.
I was able to lie still under blanket with some pain relieved using heat pack.

He'll get hot and sweaty but I think it helped.
When I get CH I realize that I am usually hungry... for whatever reason ::)

I've been pain free for 2+ months now fortunately. Hope he'll get better too!

Title: Re: I feel so helpless, can anyone offer advice?
Post by Margi on May 20^th, 2003, 10:50am

Wow, Ch-Nic - Mike (my hubby) heats up SO bad during an attack, the LAST thing he would try is to add more heat!! :o

Ice packs bring him much more relief. We tried the heat once and it definately made things worse for him. The only time I ever offer him heat or a blanket is after an attack when the chills set in for him.

And....forget eating for Mike.. He usually drops about 15 pounds in each cycle. His appetite is just zero during that time. Foods that don't normally upset him, will quite often act as triggers (Chinese Food - msg, cheese, dairy, prepared meats, etc.) when he's in cycle.

Strange beast, this affliction...

Title: Re: I feel so helpless, can anyone offer advice?
Post by david_spencer on Aug 21^st, 2003, 5:51am

i know just how you feel when you say you feel helpless. i did too the first time my husband got a cluster headache. we dont have any insurance either,but i took him to a doctor once that didnt have any trouble finding out just exactly what was wrong. unfortunantly, the meds didnt do too much good. my husband craves very hot coffee when he gets one. please have your husband email my husband at debbspn@directus.net and perhaps they can exchange stories and help each other, if only emotionally. i know my husband would welcome some friendly support. thank you and god bless.