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Roxygirl
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New to site....
« on: Mar 24th, 2006, 4:29pm » |
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Hi,
I'm new to this site so I'm just figuring out how all of this works. I've been so frustrated these past few weeks!! I haven't had a cluster headache in over 6 years and they came back. I thought for sure they were gone for good. Now I'm trying to deal with them all over again. I've been trying to do research and see if anything new has been discovered, ie. new medications, etc. This seems like a great site to hear from others dealing with the same pain. Right now I'm taking Verapamil and Zomig nasal spray. The Zomig is terrific but my insurance only covers 6 uses a month. Right now I'm trying to write them a letter to see if I can have that changed. I had a CH the other day that was so bad and wouldn't go away so my boyfriend picked up Zomig eventhough it wasn't covered by insurance. It cost $186. OUCH! I can't keep doing that. If any of you have had the same experience with your insurance company and had success writing a letter let me know. Any other thoughts on what I might do????
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Jonny
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Re: New to site....
« Reply #1 on: Mar 24th, 2006, 4:41pm » |
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on Mar 24th, 2006, 4:29pm, Roxygirl wrote:| Any other thoughts on what I might do???? |
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Read and keep reading, there is more info on this site than anywhere in the world dealing with CH.
Sorry you have to be here, but welcome to the family.
I was chronic for 30 years, over a year ago they just went away. will they come back?....I dont know, but if they do I know I have this family that understands my pain to lean on.
Good luck...and read!!!
.......................................jonny
Edit to add: Check and read all the info on this site, it may or may not be for you, but its worth the read if you have CH.
http://clusterbusters.com/
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| « Last Edit: Mar 24th, 2006, 4:48pm by Jonny » |
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Roxygirl
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Re: New to site....
« Reply #2 on: Mar 24th, 2006, 4:53pm » |
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Thanks! I was really excited to run across this site.
30 years! Wow!! That's definitely not encouraging words but I'll keep my fingers crossed for you. Just curious...when you had yours did you have them everyday? Did they go away certain times of the year? In the past I would generally have them 3 months out of the year, about 4 times a day. I've been lucky this time around. They started out about 4 times a day but now I get them once (occationally twice) a day. I just hope mine go away soon....at least until next year. 
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Jonny
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Re: New to site....
« Reply #3 on: Mar 24th, 2006, 4:59pm » |
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on Mar 24th, 2006, 4:53pm, Roxygirl wrote:| Just curious...when you had yours did you have them everyday? Did they go away certain times of the year? |
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No, chronic means that they dont go away, a few pain free days here and there, but not months.
Hang in there kid...you are in good hands now 
Keep reading 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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chewy
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Quote:| Right now I'm trying to write them a letter to see if I can have that changed. |
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Thats fine but what you really need to do is get your Doc to write a Letter of Medical Neccesity.
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Jonny
CH.com Alumnus
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Re: New to site....
« Reply #5 on: Mar 24th, 2006, 5:44pm » |
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on Mar 24th, 2006, 5:40pm, chewy wrote:
Thats fine but what you really need to do is get your Doc to write a Letter of Medical Neccesity. |
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Go Chewy 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Bob_Johnson
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Re: New to site....
« Reply #6 on: Mar 25th, 2006, 4:04pm » |
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Sources of options:
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Bob Johnson
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RichardN
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Re: New to site....
« Reply #7 on: Mar 25th, 2006, 7:19pm » |
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Welcome . . .
. . . and ditto to the above.
DO make sure you read up on the oxygen info . . . works for 60-70% of us to abort. I can't take triptans(arterie blockage and high cholesterol) . . . so 02 is my only abortive. A real miracle for those of us it works for.
Keep reading . . . keep asking. All here truly understand your pain and the wealth of information here has helped many (including myself) get their lives back.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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thenucman
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Re: New to site....
« Reply #8 on: Mar 25th, 2006, 7:56pm » |
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Ditto to what RichardN said about the O2. Not only that, usually the insurance coverage is better. My O2 costs me $3.00 a month for as much as I can use. Its not as convenient, but if it works for you, its much easier on your system and pocketbook.
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Roxygirl
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Re: New to site....
« Reply #9 on: Mar 28th, 2006, 9:46am » |
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Thanks everyone for responding. All of the info I can get is helpful. And thanks Bob for sending me that website link. That's definitely something I'll want to send to my insurance. This weekend was pretty rough. I really felt like I wanted to die on Saturday night. I had a horrible attack!! I took the Zomig a little too late. I picked up an oxygen tank yesterday. I really think that helped! I used it before the time I normally get a CH and I didn't get one. What a relief!! Hopefully it continues to work. I'm going on vacation next Tuesday. Has anyone noticed they have a harder time with CH on a plane? I'm really nervous about the trip and not sure what to expect.
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pfunk
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Welcome. Sorry you had to find us but glad you did. I have suffered from CH for 20+ years. However, until X-mas time I had been PF for almost 2 years and I too thought they were gone forever. I first found CH.com in 2000 but had lost touch for one reason or another. This most recent cycle has been particularily difficult for me so I came back firing questions a-mile-a-minute. Everyone here has been great and more than willing to help. They welcomed me with open arms as they do all. I have gained invaluable knowledge through these guys and will never go another day without checking in. Listen and read as much as you can. PF wishes and vibes to you.
Patrick
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Roxygirl
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Re: New to site...
« Reply #11 on: Mar 29th, 2006, 9:25am » |
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Thanks Patrick,
Sorry yours have been coming back too. It seems like after every ch I have I sit and cry for a good hour out of frustration. I know that doesn't help any. Just curious, what are you taking? I've been taking Zomig which works great for me and I just got an oxygen tank. That works just as well. The pharmacy that gave it to me said it would last 7 hours. I've only used it about 6-7 times 10minutes or so each time. Now it's saying I'm almost out of oxygen. I've been turning it off. If you use one do you have that same problem??
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Roxygirl
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Re: New to site....
« Reply #12 on: Mar 29th, 2006, 9:59am » |
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Well, I just found out from the pharmacy that they gave me the wrong tank. It only had an hour and 1/2
of oxygen in it. Guess that answers my question.
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marlinsfan
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Re: New to site....
« Reply #13 on: Mar 29th, 2006, 10:04am » |
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Hi Roxy, if you used it 6 or 7 times for 10 minutes, it sounds like you got an E tank. If it's skinny and tall (up past your knee), then that's what you have. I have 3 of those, adn each lasts about 1 hr. So when I finish off the 2nd one, I call in for a refill.
Where is our vacation? When I travel I find an O2 supplier ahead of time, and I call ahead and have them deliver tanks to my hotel room. I bring my regulator and mask with me. If you tell us where you're going, I'm sure one of us will live there and point you to an O2 supplier. (I'm in FLA).
PF wishes.
jose
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Roxygirl
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Re: New to site....
« Reply #14 on: Mar 29th, 2006, 12:51pm » |
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Hi Jose,
Actually my name is Ali. My dog's name is Roxy. When I set up my account here I thought we had to use another name for our login and that's the first that came to mind.
The pharmacy did give me a little tank that lasts about an hour. i took it back and this time they gave me 2. I'm going to the Dominican Republic and Apria HealthCare (where I got my oxygen tank) doesn't ship internationally. I've been trying to just stick to oxygen while I'm here and saving all my zomig nose sprays for vacation. I also have a couple of Imitrex nose spray samples to bring with me. Hopefully that'll cover me.
Florida?!! Lucky you. It's beautiful out there. I've been to Ft. Myers and Sanibel area. I used to tell myself if I lived by the beach I wouldn't get ch and all would be wonderful. Guess my theories wrong... I think that was just my excuse for trying to get the heck out of Kansas. Well, thanks for the info.
Ali
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marlinsfan
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Re: New to site....
« Reply #15 on: Mar 29th, 2006, 3:26pm » |
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Ali, I sometimes visit the Spain site (I speak spanish & italian). I'll go there later to see if anybody there knows of an O2 supplier in the D.R.
I wish I could be PF in Florida. I've lived in south america, europe, Florida, Colorado, Boston, and the CH has been the only constant thing in my life.....
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marlinsfan
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Re: New to site....
« Reply #16 on: Mar 29th, 2006, 4:45pm » |
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Hi Ali, it's me again.
I did a quick search on the Dom Rep yellow pages and found:
Oximed
Address: Resp. 18 No.33 Ens. La Fe
City: Santo Domingo , Province: Distrito Nacional
Dominican Republic
Phone: (1-809) 541-0017
Fax: (1-809) 565-8806
I called them and spoke with Nidia Ramos, a nice lady who speaks English. She will deliver a tank to your hotel room, but they don't have regulators that go to 10-12 LPM, so you'll need to bring your own. They charge $8,860 pesos (about $275 US$) for the tank, and you'll get $6000 of those pesos back ($185) when you return it (that's a deposit, I guess). They will deliver within Santo Domingo. I'm not sure where you're going, but they may deliver elsewhere if you're not going to be in the city, or may send you to another supplier. You don't need a prescription.
If you need help, give me a shout.
Jose
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Roxygirl
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Re: New to site....
« Reply #17 on: Mar 29th, 2006, 5:21pm » |
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Thanks Jose,
That was really nice of you to do all of that. I'll have to double check where we're going and see how far
Santo Domingo is from where we're staying. Thanks again!!! Very helpful info.
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