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Hopeless and Afraid (Read 7237 times)
jmccune84
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Re: Hopeless and Afraid
Reply #25 - Sep 25th, 2013 at 8:30am
 
This sucks! Sorry to be so negative but I just don't have enough $ to get a tank. I am trying to get one from my mother in law but her tanks are empty but she did agree to give me one. I am experiencing something very strange though... my headaches have moved to the left side of my head??? F N crazy. The pain is sharper i think because the left side isn't use to it. I had 4hits in the last 24 HRS and I'm at a kip 4 now. I'm gonna get some o2 no matter what i have to do!
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Guiseppi
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Re: Hopeless and Afraid
Reply #26 - Sep 25th, 2013 at 8:31am
 
There are a small percentage of CH'ers who suffer from both side attacks or even switch sides from attack to attack or cycle to cycle. Undecided

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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TeeJ2379
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Re: Hopeless and Afraid
Reply #27 - Sep 25th, 2013 at 2:04pm
 
JM - you sound like you need a break man - see how much a prescription for 80mg predisone taper would cost you - it will only be a temp fix, maybe two weeks , but maybe enough time for you to get O2 and some other weapons setup to fight beasty.  Predisone is only a temp fix, so get the O2 and other things ASAP, but I hate for you to suffer while you are working getting that stuff.  80mg predisone 14 day taper gave me almost instant relief for a good week and a half.
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« Last Edit: Sep 25th, 2013 at 2:07pm by TeeJ2379 »  

Pain is a wonderful teacher and motivator...
 
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TeeJ2379
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Re: Hopeless and Afraid
Reply #28 - Sep 25th, 2013 at 2:07pm
 
Hang in there man, we know how you are feeling - keep strong and keep fighting...praying for you..
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Pain is a wonderful teacher and motivator...
 
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jmccune84
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Re: Hopeless and Afraid
Reply #29 - Sep 26th, 2013 at 11:12pm
 
I dont think you guys will ever know how much you have helped me. I am so grateful for the support. I have good news... I have o2  Grin My mother in law gave me two E tanks! But I dont have a regulator...yet. I had to drive an hour and a half there and back but Im willing to go to any length to find release from the beast. On the way home I was hit with a kip 9 ... it got the best of me. You know what i mean, shakes and all. Then straight to work. I found a regulator on ebay for around $20 but Im going to try to get one from a local medical supply store so I dont have to wait for it to be shipped. I do have a question about the lpm and the regulator. I noticed that the one my mother in law had only went up to 10 lpm in increments of 2. And I know I will need 12-15 lpm for 15 -20 mins to abort the attack. Any suggestions?
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ttnolan
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Re: Hopeless and Afraid
Reply #30 - Sep 27th, 2013 at 3:09am
 
Higher lpm is required, 15lpm minimum with a good mask like the one sold here...
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The mask can make all the difference. If you have the option I would go for the 25lpm version like this one...
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The smaller E tanks use a different valve style than the bigger medical tanks, and all welding tanks. Your E tank is the CGA-870 type, bigger tanks, and welders tanks, use the CGA-540 connection.
You will need both eventually, but get the 870 now, you will always need it for "portable" O2 use (I keep a tank in the car).
Good luck with your quest for relief.
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« Last Edit: Sep 27th, 2013 at 3:24am by ttnolan »  
 
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ttnolan
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Re: Hopeless and Afraid
Reply #31 - Sep 27th, 2013 at 3:19am
 
If you get the cheaper masks like this one...
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(notice the bag), you will find the bag too small to hold the O2 you will be wanting, and there is a flap over the exhale holes only on one side. You will have to plug (with your thumb or...?) the holes on the other side when inhaling.
You need 100% O2 going in, not room air. However I will say I used these cheap ones successfully for many years at 15lpm before the high flow regulators were common, and the cluster mask had not been developed for us yet.
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« Last Edit: Sep 27th, 2013 at 3:20am by ttnolan »  
 
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Bob Johnson
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Re: Hopeless and Afraid
Reply #32 - Sep 28th, 2013 at 10:08am
 
It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location.
====================================

Call your local hospitals and see if they have free/low cost clinics and/or a doc who will discount his fees.
--
LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.





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Bob Johnson
 
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jmccune84
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Re: Hopeless and Afraid
Reply #33 - Sep 28th, 2013 at 11:07pm
 
Thank you Bob... I am from Parkersburg, West Virginia. I am in the process of getting medicaid but I wont know if I am accepted until December. The insurance at work is too expensive. I only make 9.35hr and it takes all I got to keep a roof over my families head and food on the table. The Dr I saw works in an office that uses a sliding scale to determin the bill and then allows me to make monthly payments, but she is ignorant to C.H. I asked her about a referal to the Cleveland Clinic and she said she would be willing to do that next month. She had never treated anyone with C.H. and I was there for two hours while she researched and came up with a treatment plan. I asked for imitrex and o2 but to no avail. She didnt give me any abortive meds at all. I dont know where she got her info but I seemed to know more than here. Kinda discouraging. This website has been a GODSEND and I am eternaly grateful! The support and info I have been given here is unparalelled. Today I have hope, today I feel like I have a practical solution to fight this damn beast, today I have a place wear people understand exactly what Im going through and and I believe they care. So Thank You! Smiley
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« Last Edit: Sep 28th, 2013 at 11:08pm by jmccune84 »  
 
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Bob Johnson
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Re: Hopeless and Afraid
Reply #34 - Sep 29th, 2013 at 11:56am
 
Your doc is in a bind! Let's try and educate her so that she can treat you. MANY of us have had to travel this route and if she is open to getting some medical information--let's try.
----
Print the PDF file, below, and give to her.

Print this address. A web site run by one of the best Headache docs in the middle-west.

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Tell her that this site is full of searchable articles on specifics of headache. And he offers an e-book aimed at docs loaded with guidance/med infro., etc.
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Ask her to consider giving you samples of this med. Acts as an abortive of attacks and it's cheap compared to Imitrex.
........
Headache 2001 Sep;41(8):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.

PMID 11576207 PubMed

--------------------------------------------------------------------------------


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.
=====
Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]

This has been my only abortive since I found this abstract. It's rapid in action. Several other folks on the site have reported the same good results.
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« Last Edit: Sep 29th, 2013 at 12:00pm by Bob Johnson »  
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Bob Johnson
 
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Bob Johnson
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Re: Hopeless and Afraid
Reply #35 - Sep 29th, 2013 at 12:10pm
 
One more to print out.
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Bob Johnson
 
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