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New CH.com Forum › Supporter's Corner › Supporter's Corner › 20+yrs...still need to know I'm not alone

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20+yrs...still need to know I'm not alone (Read 2481 times)

LisaofMN

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I love YaBB 1G - SP1!

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20+yrs...still need to know I'm not alone
Sep 1^st, 2010 at 12:14am

20+yr. supporter.... First off, thank you all that are here yr. in & yr. out. You are always my first place to turn when the beast returns. I am so glad I looked here for info before ordering O2. I knew enough to order a non-rebreath mask when his Nuero did not.

After a wonderful 6yr. remission my husband is 3 weeks back into cycle. We have been joking that there is a bright side to turning 40...no more CH's! Not so lucky..
Just when you think you know how to handle everything (stock piles of expired Imitrex & o2 tank ordered) the beast throws a curve ball. Major ear infection that causes the headaches to be constant & almost untouchable.
We have gone through 2 O2 tanks in a week & most of his expired Imitrex.(expired 2005)

Anyhow, just wanted to say thanks after a really hard day of feeling sorry for myself!

1. Can't stand to watch him suffer.
2 Can't afford RX of Imitrex @ $160.00/one box
3. Don't qualify for Bridge to Access help because we have insurance.
4. Lack of sleep
5. 3 Kids that really need to go back to school now. Wink

6. Putting up with stupid comments! "Get off Gluten"
7. REALLY hate to see him suffer!

Thanks for listening! I had to get this off my chest before I get in the Nuero's office tomorrow. I don't want to lose it in there.

BTW...Should I ask about testosterone testing?? I read the thread. interesting.

Lisa

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QnHeartMM

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I AM a Phoenix!

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Re: 20+yrs...still need to know I'm not alone
Reply #1 - Sep 1^st, 2010 at 10:19am

Hi Lisa, wow 6 year remission, what a blessing!

A few ideas that are probably new since then - that seem to work for my husband Joe (Guiseppi)

Redbull - he downs one while he's finishing the O2, it helps with the shadows.

Check out Batch's combo of Lemonade and supplements - let me know if you can't find it but it'll be in the treatment threads. Actually just search on lemonade and you'll probably find it either posted by Batch or Joe.

4-way nasal spray (that's the brand) not sure what it does, maybe just open him up to be able to breath in more O2.

If he gets woke up with CH, try melatonin, Joe's been posting on that too lately.

If the mask he has today has holes in it, tape them up til you get your new one.

Some have suggested if you're limited to the 6 imitrex shots per month that insurance companies seem to be covering these days, ask the neuro also for the nasal (both, not instead of) and alternate between those 2.

And then what about prevents? Lithium or verapamil? Ask the neuro about this with a prednisone taper to block CH to give 10 days for the prevent to kick in.

Wishing your husband some relief....hang in there...

Christy

Treat people with kind words.

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LisaofMN

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Re: 20+yrs...still need to know I'm not alone
Reply #2 - Sep 1^st, 2010 at 12:36pm

Thanks Christy
I really am not feeling sorry for myself. Just helpless again and sorry for him.I should have worded that better.
Anyhow,I have been buying him Rockstar & Redbull. They seem to help. Picking up Melatonin today.

Will tape mask...Thanks for idea. He just went through a whole tank in 2 days.

The thing that is new this round is the ear thing. He has fluid draining from his ear & is infected. Making him miserable on top of clusters.
Looking forward to going to Neuro with him today. He really wants to try just using Verapamil (sp)& skipping the Pred taper.
He hates being on Pred. Do you think that is wise???

Thanks
Lisa

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QnHeartMM

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Re: 20+yrs...still need to know I'm not alone
Reply #3 - Sep 1^st, 2010 at 1:33pm

The Verapamil will take probably 10 days to get into his system so the Prednisone would help block hits in the meantime. Generally it's a relief for most. They do it on a decreasing dosage usually over a 10-14 day process.

Glad you're getting things into place. You know my husband uses a on- demand value instead non rebreater. His O2 lasts alot longer that way. I'll see if I can get you a picture. The good news is O2 is so much cheaper than the drugs though.

Treat people with kind words.

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DennisM1045

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Re: 20+yrs...still need to know I'm not alone
Reply #4 - Sep 1^st, 2010 at 5:50pm

Hi Lisa,

Thank you for being there for him. You supporters are an amazing lot.

I would recommend getting his Testerone level tested. It's an inexpensive blood test and, as I've found out my self, can be a real game changer.

If it turns out normal, all he's suffered is a blood draw.

Leave no stone unturned Wink

Good luck with the ear and the cycle.

BTW: What flow rate is he using? You might try the Lemonade cocktail that Batch came up with too.

-Dennis-

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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Garys_Girl

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Planet Cat, NJ
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Re: 20+yrs...still need to know I'm not alone
Reply #5 - Sep 1^st, 2010 at 7:45pm

Hang in there. As another supporter, I know that feeling of helplessness. Unfortunately Gary is chronic with no pain free time inbetween hits, so we talked long ago about his trying not to wake me at night, and how one of the best things I can do for him is get a good night's sleep. My being able to "keep it together" really helps him. ~hugs~

Also, I find that searching and researching treatments that may help him helps me feel less helpless. Spend lots of time in the medications board - see all the many things people have tried that may help!

And absolutely, I second Dennis' opinion to get his testosterone levels tested. THAT ALONE has helped so many.

Hang in there! You're not alone. ~More hugs~ !!!!

This is enough already

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annar

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Re: 20+yrs...still need to know I'm not alone
Reply #6 - Sep 28^th, 2010 at 3:58pm

I'm in the same situation, although I only have 8 years of support under my belt. It's been a 3 year remission (his normal remission length) and here I am again back on the cluster heads board. I've been through the medication board and it seems as though the only difference is testing testosterone. Anyone know anything else? Last cycle my husband did O2, red bull, maletonin. He won't do verapamil. Last cycle they put him on topamax and prednisone. The prednisone had horrible side effects and the topamax left him feeling dopey ALL THE TIME. He's a teacher so it's an unacceptable side effect. Has anyone's sufferer tried magnesium, calcium, vit B regiment with any success? HELP! We now have a 1 year old who's teething and between him and her I think we may go insane.

Wishing everyone's CHer's pf days and nights!!!

Wife to a CHer

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Guiseppi

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Re: 20+yrs...still need to know I'm not alone
Reply #7 - Sep 28^th, 2010 at 6:30pm

Bless your heart for being a supporter. My last cycle went 8 months and ended 2 months ago. At one point the 02 stopped working and I went on Batch's "Arterial PH Diet." It alters your arterial ph to make you less succeptible to hits, helped me out BIG time.

Magnesium, Calcium with Vitamin D and Zinc, washed down with lemonade, up to 4X daily. Cheap, no side effects, worth a shot!

CH and a 1 year old...ouch. Cry

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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