hey all u ch sufferers,god willing as many of u r PF right now :). im a supporter my hubby is a chronic ch but most recently his hits are changing meybe im just not as well informed as i could be!! anyone wanna share thier own experiences so i can understand a little more about the damn beast its so frustrating i try to comfort him when the hits come but deep down i know that i aint really doing much to help. the doc STILL refuses 02 cuz he smokes ::). dont get me wrong i WILL NOT TAKE NO 4 AN ANSWER & i'll keep on trying day after day no matter how long this take i WILL get him the 02 by hook or by crook pls can some1 give me some pointers on what i can do to help when he's having a hit thanx for all ur help this site has been a god send also we r not rich but i'd like to make a donation to ur cause how do i do that? it wont be much but i'd really like to show my appreciation & maybe a little financial donation might be appropriate thanx again all u great ppl charlotte xoxo

You're doing a great job as a supporter. And every little bit helps as far as donations to keep the board afloat. At the bottom of the page there is a button called "paypal" click on that to donate to the board.

Bless your heart for sticking by him it's not an easy road for you supporters.

joe

Quote:

Have you talked to Helen (LeLimey) about the O2 thing yet? I thought she offered to have you contact her so she can guide you through what is needed to get the O2.

Yes Bill.  Her and her husband have been given this advice from Helen as well as from me.  The last I heard they had made all the calls necessary and were in the process of seeing someone who was going to give them a referral.  She has been told that they cannot refuse him 02.   :-/  

We all thank you for being a supporter. You're right. This place has been a wonder to so many. Although it's been many years since I had serious hits, I continue to learn.

Here is something to try:

                                         Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie      

can you get welding o2 over there? that would be easier than going to some goofy doctor. or maybe you change doctors. o2 is a must!

Johnny you do not need to do that here.
You can get O2 as a smoker, it's not that hard. ((5 of the people I know with CH here use both o2 and smoke - as it happens, apart from Jasper I'm the only ch'er I know who DOESN'T smoke! I only know one who doesn't use O2 and that's choice not circumstance.

Dear Worried Wife,

YGBSM !!!  Having a PCP/neurologist refuse to prescribe oxygen therapy for your husband’s cluster headaches because he smokes is a bummer !!!  

I’ve searched the UK Department of Health archives at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and cannot find any policy that would prevent the prescription of Home Oxygen Therapy Services to a known smoker.   I’ve also read through the latest UK DoH Home Oxygen Therapy Service: Service Specification, and found nothing there on any policy like this either.  Having said this, it is clearly possible such a policy actually exists…  I just haven’t found it.   It’s also entirely possible this is a local policy.

What I did find (see link below on WHO Europe evidence based recommendations on the treatment of tobacco dependence) while searching this topic on the Internet, leads me to suspect your husband and far too many other cluster headache sufferers there in the UK who smoke may be getting screwed by one or more of big pharmaceutical firms, and these firms have no intention of giving any of them so much as a kiss…  

After reading the article in the link below, it doesn’t take too much stretch in imagination to think that it’s also possible that if such a policy does exist, it could be easily motivated by one of the oldest of human motivations…  greed.

Granted smoking is not healthful, and after perusing the Ministry of Health web sites it’s very clear there’s a major anti-smoking campaign underway within the Ministry of Health there in the UK and other government health organizations across Europe.  However, after digging a little further, there appears to be a much closer link between anti-smoking campaign, the policy (if it exists) that is apparently being used to deny your husband oxygen therapy because he smokes, and a major three-year project to come up with recommendations to support the anti-smoking campaign.  

As you go over this link and my analysis that follows, ask yourself the following question:

who stands to benefit monetarily from anti-smoking policies that effectively deny cluster headache sufferers the use of oxygen therapy because they smoke?

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

“WHO (World Health Organization) Europe evidence based recommendations on the treatment of tobacco dependence

M Raw1, P Anderson2, A Batra3, G Dubois4, P Harrington5, A Hirsch6, J Le Houezec7, A McNeill8, D Milner9, M Poetschke Langer10 and W Zatonski, Recommendations panel11”

ABSTRACT:

The following recommendations on the treatment of tobacco dependence have been written as an initiative of the World Health Organization European Partnership Project to Reduce Tobacco Dependence.

Keywords: tobacco dependence; recommendations; treatment; nicotine replacement therapy; buproprion

This was a three year project, funded largely by three pharmaceutical companies that manufacture treatment products for tobacco dependence, “

My analysis follows:

Products (and their manufacturers) recommended in the three-year WHO European Partnership project for the treatment of tobacco dependence include:

Nicotine replacement products available over-the-counter:
   Nicotine patch (NicoDerm CQ, Habitrol, others) made by (GlaxoSmithKline)
   Nicotine gum (Nicorette, Rite Aid) made by (GlaxoSmithKline)
   Nicotine lozenge (Commit) made by (GlaxoSmithKline)

Nicotine replacement products available by prescription:
   Nicotine nasal spray (Nicotrol NS), and
   Nicotine inhaler (Nicotrol Inhaler)… both made by (Pfizer)

Now let’s look at the Non-nicotine prescription medications recommended in this project that could easily form the basis of the UK MoH policy that denies oxygen therapy to cluster headache sufferers who smoke in favor of other medications to treat cluster headaches:

Zyban® (buproprion), Wellbutrin® SR and Wellbutrin® XL.  And the pharmaceutical manufacturer of these prescription medications is…   GlaxoSmithKline  and who makes Imitrex® (imigran) and Treximet®? BINGO!!!  You got it… (GlaxoSmithKline)

Varenicline (Chantix)  And the pharmaceutical manufacturer? (Pfizer)  and who makes Relpax® (eletriptan hydrobromide)? Another BINGO!!! … (Pfizer)

Clonidine (Catapres) And the pharmaceutical manufacturer?  [B](ALZA Corporation)  But…  ALZA makes the osmotically controlled oral system (OROS®), transdermal (D-TRANS®), and implantable (DUROS®) technologies found in many widely used pharmaceutical products, including Duragesic® (fentanyl) CII, NicoDerm® CQ® (nicotine)…

Given the fact that GlaxoSmithKline had total sales of  $34.4 Billion USD over the last 12 months and that their sales of Imitrex came to over $1 Billion USD in 2008, investing a few million pounds here and there to fund and bias a three year anti-smoking project that recommends the use of their medications by the UK MoH would appear to provide the potential for a handsome return on that investment…  

If you’ve connected the dots as I have…  It becomes obvious to even the least casual observer that if such an anti-smoking policy exists that’s being used to deny you husband oxygen therapy for his cluster headaches, it's more than likely the result of a carefully orchestrated money making scheme hatched by a noted pharmaceutical firm to have their medications prescribed more frequently as a result of that policy.  


The way I see it, your husband has several options:

1.      Get in touch with the folks at OUCH (UK) at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE as it appears their Board of Directors is staying plugged into the latest UK MoH doings with respect to Cluster Headaches.  Perhaps as this has already been suggested, getting in touch with Helen (a.k.a. LeLimey) may be helpful.  I know she's got the answers and she can also be of assistance in pointing you to the right people within OUCH (UK) on this topic.

2.      Offer to start the anti-smoking therapy if his PCP/neurologist will also prescribe oxygen therapy at the same time.  Or…

3.      He can kindly inform his PCP/neurologist that if he or she refuses to prescribe him oxygen therapy as the first choice abortive for acute cluster headache attacks because he smokes, to please provide a copy of the policy that prevents the prescription of oxygen therapy to a known smoker.

4.      And, if such a policy is unavailable, your husband should request the PCP/neurologist provide the rationale for his or her refusal to prescribe oxygen therapy for his cluster headaches IN WRITING!  

5.      Email the Freedom of Information unit, Department of Health, 360C Skipton House, 80 London Road, London SE1 6LH  at: FreedomofInformation@dh.gsi.gov.uk and inquire as to any policy, provisions, or restrictions regarding the prescription of Home Oxygen Therapy Service to known smokers.


Take Care and I hope this helps.

V/R, Batch