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        Supporter's Corner >> Supporter's Corner >> Hello!
        
(Message started by: Kathie on Jul 31^st, 2002, 9:02pm)

Title: Hello!
Post by Kathie on Jul 31^st, 2002, 9:02pm

Hello Everyone!

I can't believe that after almost 20 years of living with a CH sufferer, I have found support for the "supporter."
What a blessing.

My husband is going thru a particularly nasty cycle this time, and it just about kills me to see him suffer so and all I can do is sit and stay out of his way. I hate it.

Thankfully, the headaches are changing in frequency and the amount of pain - that usually means it is coming to the end for him - thank God!

Thanks for taking the time to read this........

Best wishes to all

Title: Welcome Kathie...
Post by Ree on Jul 31^st, 2002, 11:56pm

Glad you found us, this site is definately a God-send... What kind of meds is your husband taking... is he seeing a Neuro??? How long has the cycle been this time. You probably are right about the cycle winding down. Ironically when I first found this site my hubby was finishing up his last few weeks in a cycle. My husband as well as alot of friends here suffer from CH... stick around and come back often. You can email me if you need some one on one support... Im also a veteran supporter of this horrible syndrome. I will pray that it ends soon for him... my email is Ree16angel@aol.com please put ch.com in the subject line if you mail me ok... good luck and again welcome! Ree

Title: Re: Hello!
Post by Svenn on Aug 1^st, 2002, 4:23am

First of all Welcome to Clusterville

Ree,hope you forgive me but i`ll has to copy you on this on.
Think you said it all

Your friend in Norway

Svenn

Title: Re: Hello!
Post by Kathie on Aug 1^st, 2002, 5:54am

Thanks for the welcome!

My husband begins taking Neurontin as soon as he has his first headache (unless he is in denial mode :( ) then takes it for about 2 weeks after the cycle ends. In the past he has developed tolerances to meds, so the decision was made to use it this way. He uses Esgic Plus to manage the "after glow." He has been using these meds for a couple of years now - every 2-3 cycles they have to increase the dose due to his tolerance issue. He manages fairly well, considering he often misses a dose (which makes me nuts!). He cannot use Imitrex anymore (which was great!) as he has a cardiac condition. I can't begin to remember all the different meds/combinations he has tried. The neurologist he saw changed his meds so often - even he lost track of what he was doing - that was the end of him. Our family MD has taken Roy under his wing and is managing his treatment. He treats Roy with much respect and compassion. He really has been a godsend to us.

Anyway ----again - thanks for being here ... and for the offers of help and support.

BTW Svenn - my husband is of Norwegian descent on the Rogstadt side of his family. How are things in the land of the midnight sun? I have seen pictures from my mother-in-law's recent trip to Norway - it is a beautiful place!

Best Wishes for a great day!

Kathie

Title: Re: Hello!
Post by Svenn on Aug 1^st, 2002, 10:37am

I just wont to add my medications for breaking out of cycle.But remember that i`m not a doc,just another clusterhead from Norway

Verapamil Retard 120mgX5-7/daily during cycle
Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few secons after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 60-40-30-20-10-5mg /daily

This is the miraclecure for me,but i`m not a doc.just another clusterhead from Norway

I also have a bad heartcondition.Had a heartattack Nov 12.But quitting the shots is no option for me.I think that the shots is Gods gift to us clusterheads.
The thing that i don`t understand or found the answer to is how i after the attack has had only 9 light clusterattacks."singleattacks"And before i was diagnosed as a cronical.
But so it has been said."I do not reccomend heartattacks as a treatment for cluster".Its a bit extreme for that.Dont you think? ;D
Take care my friend

Svenn

Title: Re: Hello!
Post by Ree on Aug 1^st, 2002, 11:35am

Kathie, I can tell you are a great support to your hubby. I have never heard of Esgic??? what is that? that maybe helpful to us when Dave gets hit next time.
and I also want to add:
Svenn ,you are a wonderful Clusterhead as well as a support to all of the supporters here... thankyou. You have been a very welcome addition to our group... take care and have a pain free day (or night whichever is occuring in Norway)
sincerely Ree

Title: Re: Hello!
Post by Kathie on Aug 1^st, 2002, 7:57pm

Svenn - thanks for the info ------- Roy tried a similar combination without much effect, unfortunately - I am glad it works so well for you. Of note - after each of his heart attacks, and the Bypass surgery - he had long periods of remission - I think I remember reading somewhere that this is not an uncommon thing to happen after a serious cardiac "episode." I have no clue why this should be. Even with the relief it brings - you're right - I wouldn't recommend it. He would like to use Imitrex again, but his MD won't let him ... he doesn't often put his foot down, but he did on this. You are fortunate to be able to continue ....

I feel really bad at the moment - my buddy is at work and just called - he is having a really bad headache and is having a rough time toughing it thru ---- I told him about this site - it sure would help him ... he promised
he would check it out when he gets home tonight. It is one of those times that I feel totally useless .... oh well - I know he'll call in a while and be fine - but in the meantime .................

Ree - Esgic is a migraine med ( a barbiturate with Tylenol and caffeine) - doesn't help him much with the pain, but helps a lot with the "after glow" (as we call it)
I have taken it for the common garden variety of migraine and it works well.

Enough from me - you guys are going to get tired of listening to me.... Sorry

Have a good evening.......

Title: Re: Hello!
Post by Svenn on Aug 2^nd, 2002, 2:16am

Hi again Katie

My bad heartcondition is not imitrex-related but its familyrelated

Both my neuro and the first cardio was taken my shots away from me when i got the heartattack.Then i asked my primarydoc why.And he said no way.I`ll give you the shots you are needing,because you have all the right of a qualitylife Svenn .
Then a couple of weeks ago i got a huge anginapain.Was at the ER overnight.The new cardio was just marvelous .
He told me this:
Why should you choose between plaque or colera.If i`m gonna follow the book,he said,i`m gonna take the shots away from you.But i had a father he said that was a clusterhead and my heart is telling me that i can`t take your shots away,so for once in my profession i`m gonna follow my heart instead of the "book" and let you have the shots.But you promise me to be careful with the shots he said.I`ll have to tell you if he had been a girl i just had married him on the spot there.You better ask this cardio if your husband don`t have the right to a quality-life? That if the shots help him.Take care my friend and just give my best to your husband for me

Your friend Svenn

Title: Re: Hello!
Post by paul_b on Aug 4^th, 2002, 10:45pm

Welcome, read about your situation and noted husbands heart condition. New/old meds might be helpful. Check out: http://www. clusterheadaches.org/library/medications/capsaicin.htm