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Topic: New York City CH sufferer new to board (Read 2328 times) |
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krojo
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New York City CH sufferer new to board
« on: May 4th, 2008, 3:30pm » |
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Hi All,
I'm a 29 year old man in New York. I've been having CH for about 5 years. I think some of you may have it worse than me (I've never considered suicide). I first want to send my support to all fellow CHers out there. This is a terrible affliction and I know how badly it screws up an otherwise happy life.
I'm one week into an annual episode. I'm having an impossible time getting Imitrex injections, but I did just take delivery of a giant O2 tank which is next to my bed. I'm very hopeful that this will work as an abortive, but my doctor wasn't clear in his perscription, so it was delivered with nasal cannuals. I'm trying to get a non-rebreather mask, but it is proving difficult. I'm happy to purchase my own mask, but am not sure how or where to get one. I'd especially like to try the clustermasx brand that I've read about. I emailed them from the clustermasx website and the email bounced.
I'd appreciate any tips in getting this mask or other comparable masks.
Thanks,
Rob
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DragonSlayer
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That pain is only 1/2 as bad as you think it is!!!
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Re: New York City CH sufferer new to board
« Reply #1 on: May 4th, 2008, 6:41pm » |
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Hey Rob 
So sorry you came looking! But damn Glad you found us! 
Welcome to "Clusterville"!
I don't believe the clustermasx is available at this time.
I'll have to look around and come back - there are links posted here to but parts for a NON rebreather O2 mask.
Others may step up and post it for me.
In the mean time study the tabs on the left of the page.
There is a search box at the top of the page to help you look for specific topics also.
Pull up a chair and read, read, read....
If you have any questions Please ask! There are clusterheads here with alot of information about this beast.
Again Welcome to the Nut Hut!
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purpleydog
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Re: New York City CH sufferer new to board
« Reply #3 on: May 4th, 2008, 6:52pm » |
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on May 4th, 2008, 3:30pm, krojo wrote:Hi All,
I'm a 29 year old man in New York. I've been having CH for about 5 years. I think some of you may have it worse than me (I've never considered suicide). I first want to send my support to all fellow CHers out there. This is a terrible affliction and I know how badly it screws up an otherwise happy life.
I'm one week into an annual episode. I'm having an impossible time getting Imitrex injections, but I did just take delivery of a giant O2 tank which is next to my bed. I'm very hopeful that this will work as an abortive, but my doctor wasn't clear in his perscription, so it was delivered with nasal cannuals. I'm trying to get a non-rebreather mask, but it is proving difficult. I'm happy to purchase my own mask, but am not sure how or where to get one. I'd especially like to try the clustermasx brand that I've read about. I emailed them from the clustermasx website and the email bounced.
I'd appreciate any tips in getting this mask or other comparable masks.
Thanks,
Rob |
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Hi Rob, welcome to the nuthouse!
Great that you got O2! Nasal cannulas won't do the trick, you need a non-rebreather mask, using the O2 at at least 15 LPM (litres per minute). Check the regulator, and make sure it goes that high.
The clustermasx site is no longer available, but there is a link to another site that you can purchase the parts to make your own. Someone should be along to post the link to it, I don't have it.
Make sure you cut the straps on a non- rebreather mask. This is in case you fall asleep with it on, you won't suffocate if the O2 runs out. I'm not 100% sure, but if you go to a medical supply store, you may be able to purchase some non-rebreather masks. I'm not sure if a script is needed where you live. You can always have your doc order them for you. Check your pm's.
Until you get the mask, you can suck on the end of the hose to get the O2, at the correct rate. And if you can get to the O2 at the first sign of getting hit, you'll have a better chance of killing it faster. Check the oxygen info to the left of this page. Did you get a humidifier/ bubbler to attach to the line? It humidfies the O2, and doesn't dry out your nasal passages.
Why are you having a hard time getting imitrex? Is your doc not wanting to prescribe it? Is it an insurance problem? If you can get vials, with syringes, you will be able to split the shots. The amount in one vial equals what is in a stat dose injection, and many people find that a smaller dose does the trick for them. It also cuts down on rebound headaches from the trex, if you use it a lot. There is the imitrex tip over on the left, too, that explains how to split stat dose shots.
Anyway, there are several people in the New York area, and some of them should be along soon.
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Guiseppi
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Re: New York City CH sufferer new to board
« Reply #4 on: May 4th, 2008, 6:58pm » |
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Welcome to the board Krojo, some great advice above, the re breather at a high flow started at the first sign of an attack is a life saver for many.
You didn't mention any preventative medications. A preventative med is one we take while on cycle to reduce either or both the intensity and the frequency of the attacks. I use lithium, other popular preventatives are verapamil and topomax, with many having luck combining the lithium and verapamil. At 1200 mg a day of lithium I can block 80-90% of my attacks.
Sounds like you have a pretty sharp doctor already with the trx and 02 prescribed. Print out some of the med links and sicus some prevents with the doc. Might reduce the amount of trex you need.
So glad you found us, here's hoping for a short cycle for you.
Guiseppi
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krojo
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Re: New York City CH sufferer new to board
« Reply #5 on: May 4th, 2008, 8:05pm » |
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Hey guys,
Tanks so much for your helpful info. I'm sorry I didn't give a more complete posting. To set things straight:
1) I am taking verapamil as a preventative med. 120 mg twice a day. I'm not sure if it will work for me as I just started. If it doesn't, I will follow up with my doctors about lithium (thanks for the tip Guiseppi)
2) My O2 tank does flow up to 15 LPM. Actually, doc initially prescribed just 6, but I corrected him thanks to the research I had done on this site. I will have him revise the 'script tomorrow and try to get nrb mask. If it's no good, I'll get the "build your own" mask mentioned in the other thread. Thanks DragonSlayer!
3) My doc did prescribed Imitrex injections, but insurance doesn't want to pay for many of them, and then my local pharmacy was completely out for the last few days. Anyway, I should be able to get them soon.
Thanks again, I'm so happy to have competent people to talk to about this. I've been having one of those "everybody sucks" weeks. It's been one screw up after another since my episode started.
-Rob
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DennisM1045
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Re: New York City CH sufferer new to board
« Reply #6 on: May 4th, 2008, 8:52pm » |
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on May 4th, 2008, 8:05pm, krojo wrote:| 3) My doc did prescribed Imitrex injections, but insurance doesn't want to pay for many of them, and then my local pharmacy was completely out for the last few days. Anyway, I should be able to get them soon. |
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Hi Rob,
Insurance companies have forms available for your Dr to fill out for overrides on perscription limits. My company, Blue Cross Blue Shield calls them Quality Care Dosing Overrides.
I brought the form to my Dr and got the 2 shots per month raised to 2 per week.
Welcome and good luck...
-Dennis-
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debOUCH
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Re: New York City CH sufferer new to board
« Reply #7 on: May 4th, 2008, 9:20pm » |
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hey rob......................hope u r feelin beta!! i am from long island, out in suffolk county, and actually head into the city @ least once a month! i am one of those "newbies" here and to Ch........my first ever cycle started january 30th, and still in it..........those attacks are lessened.& further apart.............i thank God i found this site in March when i pretty much diagnosed myself! These people on here are wonderful and a wealth of information!! I NEVER could have gotten this far without them!
feel beta
deb
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mezza
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Re: New York City CH sufferer new to board
« Reply #8 on: May 4th, 2008, 9:30pm » |
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Hey Rob
sorry to hear about your pain!
When i first got my o2 script , my husband went to the medical supply place with the script. They started to give him the nasal cannula and he said No , my wife needs the non-rebreather mask. They said fine, handed one over with the tank. My script only specified the o2 on the script, not what kind of mask etc. So unless your state is different, you typically shouldn't need a script for a mask-
Good luck to you- also most people say it takes about 2 weeks for verap to start working- so hang in there - about 3-4 days after starting verap my hits really slowed down, still had shadows. My doctor upped my dosage 2 x - I now take 240 in am , 240 around 3 pm and 180 at bedtime- that did the trick for me- 8 week cycle now over, and will begin to taper off soon.
Everyone is different but hang in there sounds like you are on the right track!
kelly
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chefjohn
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Re: New York City CH sufferer new to board
« Reply #9 on: May 9th, 2008, 3:02am » |
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I got prescribed Imitrex inhalers which I've read are not as good as the injections but anyway that is what I have to start with. With no insurance they were prohibitively expensive. My pharmacy had me call GlaxcoSmithKlein which makes Imitrex and they were very helpful. I believe the number is 1-888-825-5249. They have a program which I qualify for called Bridges to Access that will basically get me free meds. Don't know if this will work for you but give them a call they may be abe to help you out.
John
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Bob_Johnson
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Re: New York City CH sufferer new to board
« Reply #10 on: May 9th, 2008, 8:17am » |
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You Verap dose is on the low side; see this article.
An option to Imitrex is olanzapine, also in this article. Just as effective as an abortive for some of us and much lower per cost.
The value of this article is that it represents current therapies and it's a good tool to guide discussions with your doc.
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http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
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Bob Johnson
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