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Just diagnosed 2 weeks ago (Read 1780 times)
samusaran
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Just diagnosed 2 weeks ago
Nov 18th, 2010 at 9:20am
 
It all started last saturday, I started having this unbelievable pressure in my head. I put up with it for a week, I missed 4 out of 5 days at my new job. I just started so i have no benefits. I finally couldnt take it anymore and went to the emergency room. It was there I was diagnosed. They prescribed me imitrex which is 40 a pill for me. I could any buy 4. Every night I awake at 4am with the worst pain. The imitrex end the headache pretty quickly but makes me very ill. I am a 29yr old male. I dont think I can live with this for ever. Is there any hope? PS IS it possible to even hold a job with this? Like I said no benefits, so i cant even see a specialist right now, please help with any cheap methods. I am scared and lost. Thank you so much.
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samusaran
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Re: Just diagnosed 2 weeks ago
Reply #1 - Nov 18th, 2010 at 9:29am
 
ps sorry for bad spelling and grammar, just coming down from one now.  Cheesy
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Batch
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Re: Just diagnosed 2 weeks ago
Reply #2 - Nov 18th, 2010 at 10:00am
 
Sam,

If you can get to a doc, ask for an Rx for oxygen therapy with a non-rebreathing mask and a flow rate of 15 to 25 liters/minute.  You also might want to ask for a prednisone taper.  A pred taper will buy you 10 days of light to no pain to get your act together, but for most of us the cluster headaches will return when the taper ends.

Oxygen is an abortive like imatrex (sumatriptan succinate), but that is were the similarities end.  If you're able to get an M-size oxygen cylinder (average cost is $30) and you buy your own 0-25 liter/minute CGA-540 oxygen regulator ($25 to $50 on eBay), the cost per abort is around $1.50 without insurance.

There are no side effects from using oxygen... There is or there will be with imitrex if you use it long enough.

If you can't get in to see a doc, go the welder's O2 route.  There are plenty of folks here at CH.com that will be able to tell you how.  The CGA-540 regulator fits a welder's O2 cylinder just fine. 

Give the folks at Harbor Freight a call to check the price of a cylinder of welder's O2.  There should be an outlet near your location.  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register If they ask, just tell them you're into stained glass and you have your own acetylene.

Check your PM and take care.

V/R, Batch
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« Last Edit: Nov 18th, 2010 at 10:20am by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Bob Johnson
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Re: Just diagnosed 2 weeks ago
Reply #3 - Nov 18th, 2010 at 2:11pm
 
At the top of the Medications section is a message about Tips for suffers. Explore...

Melatonin is an inexpensive OTC item which has modest benefit but worth a try: 9-mg each night.

Call your largest local hospital and see if they can suggest low/no cost clinics, either within the hospital or your community.

If you can find a doc this way, print out the the following and ask the doc for a trial run. The advantage is this is an effective med to abort CH and it's fairly low cost (on a per dose basis) compared to many of the other options.
---
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.
-----

You could start the Melatonin today as you begin the ESSENTIAL search for afforable health care/docs.

About work: yes, many of us work easily once we get the attacks under control--or if you are lucky, perhaps your attacks come at night??? when they won't disrupt employment.

But also start to educate yourself. Start with the OUCH site, buttons left, the PDF article below, and get the full version of this article---




Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
----

The benefit of these materials is that they give you a tool to discuss treatment options with a doc, they give you a good idea of what a good doc should be using for your treatment.

Finally, stay around and read. Here is where you find knowledge, sharing, support for isolation, self-pity, and fear are killers.
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« Last Edit: Nov 18th, 2010 at 2:12pm by Bob Johnson »  
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samusaran
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Re: Just diagnosed 2 weeks ago
Reply #4 - Nov 18th, 2010 at 4:10pm
 
Wow, Thank you so much. I just got home from another terrible day of work. I had my first episode at 4am and my second right at 100pm. I thank you so much for this, I stopped at a medical store and asked about oxygen and they just rolled there eyes. I was feeling really hopeless until I got home and read this. This is a major help, the one thing i was told about oxygen was I needed a license if I carried it, do I need one if I keep it next to my bed? Also is there anything I can do to avoid another cycle once this one ends. If not I guess just store a bunch of oxygen. Does anyone use the nasal spray? If so what do you think? Thank you again.
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Re: Just diagnosed 2 weeks ago
Reply #5 - Nov 18th, 2010 at 4:28pm
 
What country are you in?

              Potter
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samusaran
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Re: Just diagnosed 2 weeks ago
Reply #6 - Nov 18th, 2010 at 4:51pm
 
United states, I have tried for charity care and meda care(think thats the name) and turned down by both. Said I didnt meet requirements Undecided
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Potter
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Re: Just diagnosed 2 weeks ago
Reply #7 - Nov 18th, 2010 at 4:55pm
 
samusaran wrote on Nov 18th, 2010 at 4:10pm:
Wow, Thank you so much. I just got home from another terrible day of work. I had my first episode at 4am and my second right at 100pm. I thank you so much for this, I stopped at a medical store and asked about oxygen and they just rolled there eyes. I was feeling really hopeless until I got home and read this. This is a major help, the one thing i was told about oxygen was I needed a license if I carried it, do I need one if I keep it next to my bed? Also is there anything I can do to avoid another cycle once this one ends. If not I guess just store a bunch of oxygen. Does anyone use the nasal spray? If so what do you think? Thank you again.

  Horseshit.

              Potter
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samusaran
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Re: Just diagnosed 2 weeks ago
Reply #8 - Nov 18th, 2010 at 5:00pm
 
Awesome Thanks Potter, They looked at me if I was a druggy trying to find something weird when all I am hoping for is a miracle. I am going to try and see if I can get my benefits asap and once I do go see a specialist and see if they will prescribe it. I am actually scared of sleeping now, and imitrex's side effects scare me even more. Thanks to this site though, I hold my head up.
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Re: Just diagnosed 2 weeks ago
Reply #9 - Nov 18th, 2010 at 5:12pm
 
I use the Imitrex nasal spray ONLY for the real bad hits. There is an art to it.dont take a big snort just a little sniff. You should not taste the med. If you do then it is in your throat not your nose and then needs to go thru your system like a pill. If I use it correctly it will abort a bad hit in 10/15 mins(for me). If your nose starts to run a bit take little sniffs. My nose during a hit DOES NOT get congested so the spray works very well for me.
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IT'S JUST A HEADACHE,TAKE TWO ASPRIN AND GO TO BED!!!
 
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mikstudie
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Re: Just diagnosed 2 weeks ago
Reply #10 - Nov 18th, 2010 at 5:16pm
 
The only side affect I get from Trex is NO HEADACHE,but I dont use it very often. I have beat my night hits with Melatonin and shadows with Energy drinks and a couple Tylenol. Everybody is different with Imitrex.
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IT'S JUST A HEADACHE,TAKE TWO ASPRIN AND GO TO BED!!!
 
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samusaran
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Re: Just diagnosed 2 weeks ago
Reply #11 - Nov 18th, 2010 at 5:29pm
 
Thank you Mikstudie, I will try Melatonin. And if you dont mind what are shadows? I keep seeing that? Is it that feeling I get of creeping up on me before the hits?"Like a constant feeling I have in my head" For me imitrex makes my heart go insane and then I get really nauseaus and even extra dizzy on top of what i all ready was. All though it did knock out the headache. The other effects made it pretty rough.
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samusaran
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Re: Just diagnosed 2 weeks ago
Reply #12 - Nov 18th, 2010 at 5:31pm
 
Ps if it helps, I took Imitrex orally 25mg. Thanks again
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samusaran
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Re: Just diagnosed 2 weeks ago
Reply #13 - Nov 19th, 2010 at 11:52am
 
Update, Took the hit and went and saw doctor finally. I got my oxygen!!! And imitrex nasal spray for the really bad ones. But they gave me the nasal tube type. How do I get the mask? Thank you!
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Re: Just diagnosed 2 weeks ago
Reply #14 - Nov 19th, 2010 at 4:57pm
 
The nasal canulas will not work, but you already figured that out! Any medical supply store should have Non Re Breather Masks. Bring your prescription with you, you should not need it but some of the dorks I have dealt with at supply stores want to see a prescription no matter what you need! Roll Eyes

There is an excellent non re breather for sale on the board, look under medications and therapies, up top, optimaskII kits for sale, it;s the cadillac.

For now you can actually make your own, use a one gallon ziploc bag, seal it, poke a hole in the bottom, run the tube from your regulator into it and tape it tight. Put a hole in the top, tape the inside of a paper towel or toilet paper roll inside of it. You now own a custom non re breather bag. Cover the roll with your hand while the bag fills, huff abig breath, cover it and let it fill again!

Joe
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Re: Just diagnosed 2 weeks ago
Reply #15 - Nov 19th, 2010 at 8:53pm
 
Sam, Imitrex pills are not really an effective abortive for CH. They take too long. Imitrex is not really a preventative medicine. You need Imitrex injections. They come in a little plastic carrier with two vials and an injector. You keep and reuse the carrier and injector, replace the vials as you use them up. All of that is very expensive though.

O2 can be a good abort. It doesn't work for everyone and different people need different O2 levels for it to be effective. It's definitely a low cast and very helpful therapy.

-Chris
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