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Pammykm

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Re: New here...
Reply #25 - Jul 17^th, 2009 at 4:27pm

Marc wrote on Jul 17^th, 2009 at 12:31am:

Pamela,

In your shoes, I would ask my Doc about Indocin (Indomethacin) which is normally very, very effective for Chronic Paroxysmal Hemicrania (CPH) - a form of headache thought to be related to Clusters. Some Doctors will go so far as to say that if Indo doesn't kill it, it ain't CPH.

- CPH sufferers generally have many, many attacks per day(not you)
- CPH attacks are generally shorter in duration - 10-15 minutes each.
- Ratio of Women to Men is 3:1
- Onset is most often in females 25-35 years old.

Whatever it is, you are just starting, so at least be aware of CPH.

Marc

Thank you for the information. I will mention it at my next appointment.

I saw the doctor yesterday and he put me on Prednisone. He said we may have to try several before we find one that works. While I am not looking forward to all the side effects, I hope it works. I am on a high dose for 10 days, then I start gradually tapering off of it. The weight gain is what really scares me. Over the past year and a half, I have lost 80 lbs. I am terrified I'll gain it all back.

He also wrote the prescription for the o2. My insurance will pay for it, but the company I took it to, doesn't have anything with such a high flow rate. She called today and said she is trying to get it for me, but it may be next week.

For the first time in weeks, I had a good nights sleep last night. No headaches at all!! I was thrilled! I started the Prednisone this morning and now I am wondering if my cycle was ending. Oh well, guess I won't know for sure now.

Thanks for all the great advice and caring comments everyone. I really appreciate it!

Pamela

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campergal CH.com Junior Offline I Love CH.com! Posts: 50 ks Gender:	Re: New here... Reply #26 - Jul 18^th, 2009 at 11:01am I just started here a few days ago myself, but not new to clusters. I wish you luck with the Prednisone. I had lots of trouble with it. Callico, what side effects did you have with Verapamil? I'm on 120 mg Twice a day.
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Pammykm

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Re: New here...
Reply #27 - Jul 18^th, 2009 at 12:15pm

campergal wrote on Jul 18^th, 2009 at 11:01am:

I just started here a few days ago myself, but not new to clusters.

I wish you luck with the Prednisone. I had lots of trouble with it.

Callico, what side effects did you have with Verapamil? I'm on 120 mg Twice a day. Roll Eyes

Hi Campergal! If you don't mind me asking, what dosage of Prednisone were you taking and and how long? What side effects did you have with it? Thanks!

Pamela

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campergal

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Re: New here...
Reply #28 - Jul 18^th, 2009 at 5:25pm

The first two times (cycles) I ballooned up. My face was swollen within the 5-7 days of those pkg things.

The next cycle started. It continued going way pass my usual cycle time. 'I was desperate'! so she put me on, I think (???), 80mgs a day, I just don't remember. I know I couldn't even think straight and was climbing the walls. After a few months I went to my reg doc for something and she said, my God you are getting way too much of that stuff. So she backed me off slow. And she did some tests.

I had cataracts, gained lots of weight, thinned skinned, dented nails, a hump like thing on my back, and worst it stopped my own immune system. I got lucky and after I was off it for awhile my immune system started up.

I think the whole thing was the neuro and I wasn't communicating well. Some reason I never got back in to see her, she was on a trip or something. (?)

I was on it too long at a high dose.
That shouldn't happen to you. It just got out of hand with me. I think most people can take it fine...it was just me, and then so long and high.

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Pammykm

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Re: New here...
Reply #29 - Jul 19^th, 2009 at 1:26pm

campergal wrote on Jul 18^th, 2009 at 5:25pm:

The first two times (cycles) I ballooned up. My face was swollen within the 5-7 days of those pkg things.

The next cycle started. It continued going way pass my usual cycle time. 'I was desperate'! so she put me on, I think (???), 80mgs a day, I just don't remember. I know I couldn't even think straight and was climbing the walls. After a few months I went to my reg doc for something and she said, my God you are getting way too much of that stuff. So she backed me off slow. And she did some tests.

I had cataracts, gained lots of weight, thinned skinned, dented nails, a hump like thing on my back, and worst it stopped my own immune system. I got lucky and after I was off it for awhile my immune system started up.

I think the whole thing was the neuro and I wasn't communicating well. Some reason I never got back in to see her, she was on a trip or something. (?)

I was on it too long at a high dose.
That shouldn't happen to you. It just got out of hand with me. I think most people can take it fine...it was just me, and then so long and high.

Hi Campergal! Thanks for the info. I do 60 mg for 10 days, then 30 mg for 3 days, then 15 mg for 3 days, 10 mg for 3 days, and then 5 mg for 2 weeks. Does this sound about right?

Gaining weight is my biggest fear since I've lost so much. I sure would hate to have to start all over again...

Thanks again for the reply.

Pamela

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campergal CH.com Junior Offline I Love CH.com! Posts: 50 ks Gender:	Re: New here... Reply #30 - Jul 19^th, 2009 at 2:48pm That kind of does sound right, Pam. I wouldn't worry about the weight if you can stop a cycle Now!! Can work on weight later if you gain any. I don't think you will with being on it that short a time. I was a completely different story! That's great you lost so much weight!
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Pammykm

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Re: New here...
Reply #31 - Jul 19^th, 2009 at 2:54pm

campergal wrote on Jul 19^th, 2009 at 2:48pm:

That kind of does sound right, Pam.

I wouldn't worry about the weight if you can stop a cycle Now!! Can work on weight later if you gain any. I don't think you will with being on it that short a time. I was a completely different story!

That's great you lost so much weight!

Thank you! It's been a long journey, lol. I hope that doesn't happen. Sorry you had to go through that. Sounds awful! Did you say you are on Verapamil now? How's that working for you?

Pamela

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campergal

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Re: New here...
Reply #32 - Jul 19^th, 2009 at 3:11pm

It's not working or is the Zoming.

The last cycle 02 helped, but the doc hasn't given me a script yet. All my docs no longer are around. So I only went to a sub. Roll Eyes

She wants to try the Zoming first. She wasn't going to listen to me about 02 at this point. Roll Eyes

I'm having more shadows than the real Kippers of pain. So I will take these over the real full blown attacks.

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Pammykm

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Re: New here...
Reply #33 - Jul 19^th, 2009 at 3:29pm

So, she won't prescrible the o2? That's weird. I haven't got mine yet, but the insurance company has approved it...just waiting on the supply company. I should have it up and ready before I get off the Prednisone. I haven't had an attack since starting the Prednisone, but I hear the beast comes back with a vengeance after the Prednisone, unless it breaks the cycle.

Hope the Zoming starts working for you, or that you find something that will. Thanks for answering all my questions. Have a great day!

Pamela

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E-Double

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Re: New here...
Reply #34 - Jul 19^th, 2009 at 4:02pm

Hi Pamela,

welcome to the ward...or family Wink

I've read some of your other posts and would definitely have your doc give you some sort of abortive... a triptan, OXYGEN!!!, zyprexa is quite effective..

You are correct as to what to prepare for...Many times prednisone is used to give a little holiday, however it is usually used as a transitional medication to ease some symptoms while we introduce a preventative med such as verapamil, mood stabilizers(depakote, neurontin, topomax), lithium, etc.

Don't sweat the kid thing either.
I have a 3 year old daughter and she doesn't really notice other than daddy disappeared for a few.
She likes to use my mask as trumpet and knows that my tanks are just part of the family or Daddy's girlfriends.
When Hannah was born I was in a high cycle and would have her in one arm rocking her back to sleep and I would be huffing my oxygen....the white noise from the tank made for a nice soothing sound for the newborn.

It is what it is. Don't worry about scaring your little one, don't worry about becoming incompasitated because you will not as you are stronger than the attacks,

Read as much as you can and reach out when you need.

oxoxox

E

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I can't believe that I have to bang my Head against this wall again. But the blows they have just a little more Space in-between them. Gonna take a breath and try again.

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Pammykm

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Re: New here...
Reply #35 - Jul 21^st, 2009 at 7:05pm

Thanks E-DOUBLE! I am getting the oxygen. I called the healthcare store today and she said they are working on getting everything I need. I live in a small town and they are not used to having anyone need such a high flow rate oxygen. I should have it in a few days.

Thanks for sharing about your little one. My little boy doesn't seem affected by my headaches. My husband is usually home when I have them and I just disappear to another room until it's gone. Children handle things like this better than us adults usually, lol.

Thanks again for the welcome!

Pamela

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