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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Newbie Poster, not to CH.
        
(Message started by: SmoothSippin on Jul 17^th, 2007, 1:37pm)

Title: Newbie Poster, not to CH.
Post by SmoothSippin on Jul 17^th, 2007, 1:37pm

Hi all, I would first like to thank all of you that support this site. I have read it may times during my episodes over the years, and the advise here has been great. The best being Melatonin. However, I have never posted. I guess I am out of the shadows (not THE SHADOWS) now.

I am now back after 1.5 years PF. And they are faster then ever at catching me. My doc gives me Zomig nasal and that will help if I catch it in the first 5 min before the real deal happens. We are trying Topamax now (just started).

I am really interested in trying oxygen but my doc will not prescribe it unless we know it will work. Hence he wants me to go to an ER when I get a headache. He does not seem to get the fact that at home I am close to 30 min from any hospital.

I am a pretty handy person and armed with the right information, I am sure I can figure this out. I have welded before, and I assume this is the same stuff in a non-pretty container?? correct??. Are there some good posts or sites I can be referred to?

I would like to add that I have suffered this crap for 20 years. I am eposidic with the worse cluster lasting 7 months. I never want that again. For those with this ailment (especially chronic) , you have my deepest sympathies.

Title: Re: Newbie Poster, not to CH.
Post by Guiseppi on Jul 17^th, 2007, 3:03pm

Welcome to the board! You definitely need the oxygen. The problem is it has to be started at the beginning of your head ache. For me, if I let the headache get established, it won't reduce the pain. If I start it as soon as the headache starts it's damn near 100% effective as an abort.

Yes your welding 02 is identical to medical 02, comes out of the same big tanks. Your problem is a delivery system. For 02 to work you have to be inhaling 100% oxygen with NO OUTSIDE AIR. If you combine outside or re breathe your air it dramatically lowers the effective rate of the oxygen. There are rigs to adapt the welding rigs to a decent mask, hopefully one of the really smart people will come along behind me and explain the details.

If your doc keeps fighting you on the oxygen, DUMP HIM!!!!! I hate to be rude but any doc who won't prescribe oxygen for clusters is living in the dark ages and is liable to put leeches on you to cure you. By all means tell him I said that!!!! ;;D ;;D\

Guiseppi

Title: Re: Newbie Poster, not to CH.
Post by SmoothSippin on Jul 17^th, 2007, 3:27pm

If leeches worked, I would be using them. They are cheap :). Not to mention good for bass. I found some info (oxygen info) on the site. If there are any places I can order the delivery method items, please let me know.

Thanks for the response

Title: Re: Newbie Poster, not to CH.
Post by Bob_Johnson on Jul 17^th, 2007, 3:34pm

30-min from a hospital suggests you may be in the sticks??? If so, perhaps a volunteer fire dept. would be willing to work out a trial for you--in exchange for a $ donation.

The doc's caution is a puzzle since this is a relatively benign treatment. Have you asked what he is concerned about? Perhaps we could feed some experience to him, via you, if we knew what he is concerned about.

Print this and give to him. Coming from other M.D.s may influence him. He will recognize the source as a mainline medical journal from the National Library of Medicine.
----------

Headache. 2005 Jan;45(1):98. Related Articles, Links

CLUSTER.

[No authors listed]

Rozen TD. High oxygen-flow rates for cluster headache. Neurology. 2004;63:593 The two most effective cluster abortive agents are injectable sumatriptan and inhaled oxygen. Because most cluster headache sufferers are cigarette smokers and at high risk of coronary artery disease, many develop contraindications to triptans. Oxygen, the safest of all cluster therapies, is not effective for every patient. In Kudrow's landmark study, 75% of patients responded to 100% oxygen at 7 L/min, although only 57% of older chronic cluster headache patients had relief. A recent study documented a gender difference in response to oxygen because only 59% of female cluster patients responded to oxygen, whereas 87% of men did. In most textbooks and articles on cluster headache treatment, patients are instructed to use 100% oxygen via a nonrebreather face mask at 7 to 10 L/min. The rationale behind this prescribed oxygen-flow rate is unknown but has become doctrine since the Kudrow study. Prescribing higher flow rates of oxygen up to 12 L/min has recently been suggested, but there is no documentation that this may improve efficacy. Higher oxygen-flow rates (up to 15 L/min) are not known to benefit cluster headache patients refractory to standard oxygen therapy. Three cluster headache patients who demonstrated no response to standard oxygen therapy were exposed to higher flow rates of oxygen (14 to 15 L/min) to assess response. Comments: Once again, Dr. Todd Rozen's observations will change my clinical practice!-Stewart J. Tepper, MD I have questions: Were these empirical observations or do Drs. Kudrow and Rozen know how rate of flow affects oxygen delivery? Is oxygen uptake higher with higher flows? After all, 100% oxygen is 100% oxygen unless under hyperbaric pressure! Perhaps higher flow rates dry the nasopharyx to a greater extent. If patients perceive a higher flow rate, might this be an enhanced placebo effect? It seems like an interesting study to be conducted, and it would be useful to test if using nasal cannulae is just as good. Pulse oximetry and arterialized capillary blood gases could be used to monitor oxygen saturation and CO(2) retention/carboxyhaemoglobin levels in smokers.-David S. Millson, MD.

PMID: 15663630 [PubMed}
----------------
Neurol Sci. 2004 Oct;25 Suppl 3:S119-22.

Cluster headache: symptomatic treatment.

Torelli P, Manzoni GC.

Headache Centre, Section of Neurology, Department of Neuroscience, University of Parma, Via Gramsci 14, I-43100 Parma, Italy. paolatorelli@libero.it

The clinical management of cluster headache (CH) attacks requires a symptomatic treatment that is rapidly effective in resolving or significantly reducing symptoms. First-choice drugs for the symptomatic treatment of CH are subcutaneous sumatriptan at a dose of 6 mg and 100% oxygen inhalation at a rate of 7 l/min for no more than 15 min. Sumatriptan acts by suppressing pain and the accompanying autonomic phenomena, with no substantial differences in its mechanism of action between episodic and chronic CH. The drug can be used for prolonged periods without loss of efficacy or safety and its side-effects are generally mild or moderate. Oxygen inhalation has a number of advantages over drug therapy: it is free from side-effects, has no contraindications--unlike sumatriptan, it can be used in patients with cardiac, cerebral or peripheral vascular disease and with kidney, liver or lung disease--acts rapidly and can be administered several times a day. Its disadvantages are that it is scarcely practical and may induce a "rebound effect". Sumatriptan nasal spray, zolmitriptan and dihydroergotamine nasal spray are scarcely effective. After the introduction of sumatriptan, ergotamine tartrate has been relegated to a secondary role in the symptomatic treatment of CH. Among other non-drug and topical drug treatment options, hyperbaric oxygen therapy and the intranasal application of 10% cocaine hydrochloride and 10% lidocaine in the sphenopalatine fossa have also proved effective.

PMID: 15549518

Title: Re: Newbie Poster, not to CH.
Post by Barry_T_Coles on Jul 17^th, 2007, 7:23pm

Hi Smooth [smiley=wave.gif]

Have a look at the link to Mr Happy's site at the bottom of my post, there's a bit of info on o2 there.
Good Luck.
Barry

Title: Re: Newbie Poster, not to CH.
Post by Rosybabe on Jul 17^th, 2007, 10:12pm

Welcome aboard Smoothsippin!!

I see the guys already got you some info, check out the O.U.C.H. website as well for information about welders oxygen.

Hope you get to feel better soon!

Rosy.

Title: Re: Newbie Poster, not to CH.
Post by Patrick_A on Jul 18^th, 2007, 7:38am

Get a referral to competent Neuro, Then you'll get ur oxygen.

PA

Title: Re: Newbie Poster, not to CH.
Post by DennisM1045 on Jul 18^th, 2007, 3:03pm

Hi,

I had a similar problem with my GP. She wouldn't perscribe O2 for me and suggested I take my Kip 8/9 for a ride to the local hospital. Yea right. :o

Anyway, I asked for a referral to a Neurologist. She picked the right one. He was up on the latest CH research and treats other with the same condition. I got the perscription I needed. ;;D

Good luck...

-Dennis-

Title: Re: Newbie Poster, not to CH.
Post by sandie99 on Jul 19^th, 2007, 4:43am

Welcome! :)

I'm so glad that the beast let you have PF time and I'm sure that you will be PF soon again! :)

I do hope that you will get that 02. I can't even imagine you driving 30 min way while getting hit... :o

Lots of PF wishes,
Sanna

Title: Re: Newbie Poster, not to CH.
Post by SmoothSippin on Jul 19^th, 2007, 9:49am

Thanks for the info. I found a pdf on OUCH that was very helpful. If someone else is reading this thread and needs similiar information, search that site for "oxygen".

As for the me, I will probably take matters into my own hands for the O2. Doctors just p*ss me off anyway. All they want to do is make me a guinea pig it seems. I guess O2 would not make reps happy?? Not sure, or maybe it is just mine. Heck, they charged me to phone in a prescription for Zomig spray when I was down for the count.

So, until I find a new doc, I think my welding experiences will come into play here. Heck, the cost will be cheaper than the Zomig overage that I need. (My insurance will only cover 6 sprays a month. I can burn that in less than a week.) If it works I will be happy. If not, well I bet I can find someone that could use the equipment. Not to mention I will have another tank. :)

BTW, anyone using this "clustermasx"? Where did you get it?

Also, anyone got a good doc in Central Ohio?

Thanks all.

Title: Re: Newbie Poster, not to CH.
Post by seasonalboomer on Jul 19^th, 2007, 10:37am

Clustermasx rules! And you will likely be able to find a regulator that can delvier 10-15 lpm.

Get it here: http://www.clustermasx.com/

I think they use paypal and ship pretty quickly.

Scott

Title: Re: Newbie Poster, not to CH.
Post by SmoothSippin on Jul 19^th, 2007, 11:32am

Do you use a humidifier? I think I need a Salter(labs) 7900 but I cannot seem to find it anywhere.

Thanks.