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Topic: Lifeline (Read 523 times) |
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Thorns
New Board Junior
"Ahhhh....that feels good!"
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Hi everyone  ,
I am a first-time writer, but long-time reader. I have been visiting this site for about three years now and I am amazed at the support and the wealth of knowledge and information that is offered on this forum. This site really helps me get through a tough cycle. I must admit though that I am a rather selfish visitor; I usually only visit in times of desperation  .
I have been an episodic CH sufferer for six years now. Although, I have only actually known this for three years. You name it and I was diagnosed as having it! I'm sure everyone here has been through the same saga. I moved last year to attend graduate school and lost my insurance and great neurologist (Paula Tumminello in Charleston, SC for those in that area). She was very understanding and up on all of the newest treatments. I was subsequently hit with the worst cycle I have ever endured in terms of length and intensity. The beast (fits nicely) jumped on me in Feb. and beat me relentlessly until about Nov. I had little to no weapons to fight back because I was turned down for new insurance during this time due to my history and diagnosis with clusters.
I thought that I was becoming a chronic at this time because my normal cycle is usually during the spring and fall for approximately 2-3 months each. I now have a whole new respect for all of the chronics out there. I don't know how you guys do it??? If the beast had not packed his bags when he did I don't think I would be here now. I went through some very dark and scary moments last year. I wanted to reach out to everyone here but I just didn't have the desire or energy after batteling for so long. Luckily I have the support of a very loving and understanding girlfriend and family that helped me through the frightening moments.
I am still without insurance and weapons. Although, I have just started my own "cultivation" and I am hoping that this new technique helps. I have tried just about everything out there with some successes, but the big guns are out of question for now $$$. However, I'm a little worried that I started too late because the shadows have begun to creep up and I've already had a few pre-cycle hits (KP1-2). Hopefully I can hold the cycle off long enough. I'm usually able to postpone the cycle with melatonin and I can abort anything less than a KP 7 by sprinting around the block for about 10 minutes and lots of water.
Anyway, thank you for reading all my info.; I just wanted to introduce myself and I hope that this board/community can become one of my lifelines in future battles.
~Chris (a.k.a. thorns) 
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Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
    
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Re: Lifeline
« Reply #1 on: Feb 2nd, 2004, 11:34pm » |
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Welcome and I hope this thing isn't gonna clobber you again. I know about the cost of treating this horror but this link is to something that worked for me:
http://www.netsync.net/users/charlies/
Give it a shot and let us know how you're doing/
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Mr. Happy
CH.com Alumnus
New Board Hall of Famer
If I can do it, it ain't art.
 
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Re: Lifeline
« Reply #2 on: Feb 3rd, 2004, 12:23am » |
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on Feb 2nd, 2004, 10:21pm, Thorns wrote:| I am still without insurance and weapons. Although, I have just started my own "cultivation" and I am hoping that this new technique helps. |
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DING
No insurance, no weapons, and too poor to pay attention.
Grown to maturity.......
Harvest Moon,
RJ
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May those who don't want any
Have memories of never getting any.
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Callico
New Board Hall of Famer
Proud Dad of a US Marine!
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Re: Lifeline
« Reply #3 on: Feb 3rd, 2004, 12:33am » |
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Glad you posted finally. Welcome to the family.
A lot of us are without insurance, hence we also do without some of the more expensive remedies. However, Verapamil and Lithium are relatively inexpensive and have proven very effective for me. Also if you will check around you can find oxygen at a reasonable price, and if you are willing to put in a little extra effort you can convert a welding tank to use welding oxygen for an even lower price. There is always a way if you look for it hard enough, Course, if you are cultivating you won't want to start on any meds. It's easier to dose without having to detox first.
jc
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"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
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Mr. Happy
CH.com Alumnus
New Board Hall of Famer
If I can do it, it ain't art.
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Lifetime
« Reply #4 on: Feb 3rd, 2004, 12:55am » |
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on Feb 3rd, 2004, 12:33am, Callico_Kid wrote:| There is always a way if you look for it hard enough |
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See. Every once in a while, this place is worth it's salt.
More Snickers,
RJ
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May those who don't want any
Have memories of never getting any.
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Peppermint
CH.com Alumnus
New Board Hall of Famer
Work it out baby!
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Re: Lifeline
« Reply #5 on: Feb 3rd, 2004, 9:36am » |
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Thorns, glad you found this site... plenty to read and educate yourself on, have questions, someone will answer.
on Feb 3rd, 2004, 12:23am, Mr.Happy wrote:
Lookout especially for when Happy goes "Ding"... that's a good time to pay attention.
PFDANs,
Pep
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You like apples? How ya like them apples?
When playing in the gym, beware of steel beams. - M. Amyx
Carve your name on hearts, and not on marble. - Charles H. Spurgeon
FYI - I am NOT a clusterhead.
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benj
New Board Newbie
15 year cluster vet...and counting...
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Re: Lifeline
« Reply #6 on: Feb 3rd, 2004, 9:49am » |
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run around the block for 10 minutes? I have no idea how you found out that this wourked to sometimes keep the beast at bay. I couldn't think of anything I'd rather do LESS when I get that lovin' feelin.
cold shower + ice pack on the back of the neck in a DARK bathroom, possibly - run around the block???? no way.
each to their own. At least you know that you don't get the beast chronically! 
as the Calico Kid has said - Verapamil is cheap (I've just started using it myself) and seems to work. Of course, Imigran nasal sprays are cheaper (and far more disgusting) than injections.... options are available,
good luck (just keep repeating - this is NOT a cluster, this is NOT a cluster...)
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I don't think of all the misery, but of all the beauty that still remains - Anne Frank
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Bob_Johnson
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Re: Lifeline
« Reply #7 on: Feb 3rd, 2004, 11:21am » |
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You are in grad school now? If so, does not the university have a student medical service which you can use?
If you have access to any physician, you might print out the following and ask the doc to give you some samples to try. The nice thing about this med is that it's not nearly as expensive as the triptans and, if it works for you, will abort an attack quickly. This approach may buy you some time and relief while looking for other sources of medical care.
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1: Headache 2001 Sep;41(:813-6
Olanzapine as an Abortive Agent for Cluster Headache.
Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.
OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
------------------------------------------------------------------------ --------
Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Bob Johnson
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Thorns
New Board Junior
"Ahhhh....that feels good!"
Gender:
Posts: 70
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Re: Lifeline
« Reply #8 on: Feb 3rd, 2004, 12:40pm » |
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Wow! Thank you all for the input!
I'll try to answer some of the questions:
As far as prescriptions are concerned, I tried to keep them going last year but I couldn't manage on my meager TA salary. I was on Verapamil (240/day) up from 120 the year before because it stopped working as a maintenance drug (the 240 had also stopped). I was also on Neurontin and I was using Imitrex nasal spray as an abortive. Oxygen was my next step with the neuro. at my previous address. However, the neuro. that I had here for a brief period (with exteded insurance) refused to write me a prescription for my own O2 and also refused to give me the things that had been working (prednisone taper, neurontin, imitrex). She did write me a Rx for O2 at the emergency room b/c she believed and argued with me that a single O2 dose would stop a cycle. She also put me on the imitrex pill (100) and gave me lidocaine drops--again after arguing about the pills not working in the past. Needless to say that was the worst $250 dollars that I ever spent.
I started the running thing after reading about everyone riding a bicycle while using their mask. Since I did not have a stationary bike or O2 (welder's O2 is a little too scary with the possibility of oils and impurities) I decided to just run--I was actually pacing for about 2 hours with a KP 9-10 when the idea struck. I went outside for some cool air and got pissed and started running--I guess I felt I could outrun the sob. It has worked pretty well for the mild hits and especially if I don't wait to put on my shoes and stuff. It is definitely a hard thing to convince yourself to do but better than pacing for me anyway.
Thanks for the info on Olanzapine Bob. I had given up on the med services here after my neuro. had consulted with them via phone and found out that they didn't even have an O2 tank. We do have a pharmacy here though. I guess I should definitely try to hit them up for some free samples and Rx's (if they have them) if this one gets out of hand. I have generally avoided general MD's when dealing with this but I guess it can't hurt given my situation. Again, the prescription insurance through the school is the worst I've ever seen and I just can't afford the premium even at the student/staff rate. Thanks again,
~Chris
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BlueMeanie
Guest
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Welcome to Clusterville Thorns.
Beside the wealth of info here, talking to people who understand is the next best thing to this bad situation we're in.
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Roxy
CH.com Alumnus
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Re: Lifeline
« Reply #10 on: Feb 3rd, 2004, 2:35pm » |
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on Feb 3rd, 2004, 12:40pm, Thorns wrote:| welder's O2 is a little too scary with the possibility of oils and impurities |
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Chris, welcome. There is no question of impurities in welding 02. You can't weld with impure 02, just can't do it. My welding supply house is where my medical supply fills their 02 bottles. Same 02.....different bottles.
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Only two things are infinite, the universe and human stupidity, and I'm not sure about the former. (Einstein)
I used to have a handle on life....but it broke.
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Thorns
New Board Junior
"Ahhhh....that feels good!"
Gender:
Posts: 70
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Re: Lifeline
« Reply #11 on: Feb 3rd, 2004, 9:13pm » |
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on Feb 3rd, 2004, 2:35pm, Roxy wrote:
Same 02.....different bottles. |
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I must have been misinformed. I read the O2 info again and it does state that it is safe. So, do you have to have a prescription to purchase welders O2, and how do you get a good bottle? Thanks,
~Chris
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TxBasslady
CH.com Alumnus
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Bass fishin' is a h00t It's the catchin' that sux
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Re: Lifeline
« Reply #13 on: Feb 3rd, 2004, 11:14pm » |
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Hi Chris,
Welcome to the board.
Sounds like you've been pretty much educated on CH. Hope you can find what you need to abort any upcoming cycle.
You know......finding the right combo of meds to fight the beast is important. Having family and a girlfriend that understands and supports...........PRICELESS. IMO, without great supporters, CH would be damn difficult to deal with.
You will find some more great supporters and sufferers here on the board. This is a very unique place. You can make lifelong friends here......
Sending lots of pf vibes your way,
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas! 
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