I had been fighting my clusters (ran out of Imitrex) with brute strength last weekend and here are my results.  I am usually an indoor pacer so at night during a kip 8 I went outside, stripped, screamed and jumped into the pool.  Big mistake. It immediately escalated and I think the holding of breath aggravated it because while underwater some of the throbbing pulses of lightning I felt in my eye were so intense I thought I may faint underwater.  This made me angrier so I climbed onto the trampoline and bounded up and down for some time.  This was neither good or bad so I moved on to a brisk circular pace/jog while cursing and complaining.  No results so I hopped on a mountain bike and pedaled furiously down a pitch black road in the middle of the night.  I was fearless and extremely pissed off as I had been sleeping soundly 1/2 hour earlier.  If I would of came upon a grizzly bear I surly would have beaten the crap out of it with my bare hands.  I may have even let it maul and bite me a few times intentionally.  When I finally got better I slept like a baby and was exhausted the next day but I vowed to see the doctor and demand O2 on Monday.  I had been offered O2 during my last cycle but I laughed it off as that's for old people you know.  Now I got the O2 and the first night it worked within 15 minutes and the second night it didn't work at all. I gave up after 30 minutes and took a shot of Imitrex.  I noticed my regulator only goes to "8" so I'm gonna try get a faster one.

Oh the things we'll try to avoid the pain!

Good luck with the O2!



Just thought of an ad for O2...

Announcer says:

O2 it's not just for old people anymore!

TV screen flips to someone running the gamut of things tried to get rid of the CH pain!
Announcer says:

Got O2 ? 

 

I went back to the medical supply store that filled my O2 prescription.  I asked for a stronger or faster regulator (15+) and they said no.  They said only a hospital would need such a unit and they said they only carry 8's anyway.  I was thinking that was weird because the talk around here was like it was common usage but maybe I'd secretly purchase a better regulator elsewhere.  I asked them to refill my E tank and if they could give me a bigger tank.  They said they'd deliver a bigger one to my home address.  About an hour later I have a delivery and it was a huge M tank. Sweet. The delivery guy gives me a 15lpm regulator too!  After examining new rig I see the tank says "INTERSTATE WELDING SALES CORP" so I guess this really is the exact same stuff considering I got it from a medical supply business.  My hit last night was weak so as weird as this sounds I am hoping for a monster attack tonight so I can lay the smack down with a level 15 counter-attack and without the worry of running out of O2.

If you like that 15, you'll love a 25 lpm....
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Quote:


I'm not on anything other than the Imitrex and O2. About 3 months ago I had an Anterior Cervical Discectomy with Fusion (back surgery) for a pinched nerve.

Hi Everyone:) My fiance suffers from Cluster Headaches - he has done so for the last 8 years! and was only diagnosed properly last week with the 2nd neurosurgeon that he has seen. He used to get them once a year around April / May and for a few weeks - all of sudden he has them now again in August and has had them every day for the last 2 weeks which we know know means he is chronic!

We have been so frustrated and the 'Beast' is starting to take it's toll on our relationship, finances and outlook on life - we are getting married next month and this is supposed to be a happy time for us - but it's a nightmare! Poor Ash is suffering so badly and I am so frustrated that nothing seems to help him - I feel so helpless and he feels like a burden - it's terrible!

He has been on Medrol (we are in South Africa) which is the cortisone based med - it helps but he can't take it indefinitely, he has also tried Sibelium - calcium channel blocker & Maxalt which haven't helped AT ALL! The only thing that does help are the Imigran injections which he has learnt to divide one injection into two to save money - problem is is that he's now getting at least 2 or three headaches a day and his poor arm is bruised and sore from injecting plus it's not good for him. The doc is now going to give him a higher dose of Medrol 16mg which he says should help wit this chronic period.

He also went to a chiro today who put those deep tissue masaage machines on him and we are going back on Mon & Fri next week for more treatments and to test over a 2 week period if it helps at all. Ash being a fireman does put alot of strain on his spine and back and the chiro will help to alleviate some pain for him we hope!!!

In any case it is wonderful to know  (and he is relieved) to know that he is not the only one and that others understand his crippling pain. Thank you all for your advice and good luck to you all - my heart bleeds for you  :-[

Will keep you posted! Gaylene & Ash - KZN - South Africa

8 lpm is a joke any doctor who prescribes that low of flow should be sued for causing undo pain and suffering.

Agostino Leyre wrote on Sep 2^nd, 2010 at 4:09pm:


It is just because they don't know.  They rarely have a patient with them and if they do, they refer them to a neurologist and don't get the experience of taking care of them through the headaches because the neurologist does it.  I do wish more doctors were familiar with Clusters, but they still have a full plate caring for so many more prevalent issues.  Just saying..

If we did a better job of educating the doctors, then the number on the script wouldn't keep coming up 8's.  It was 15 on the last one that I had........ I was lucky enough to have a doc that listened, my last 3 have been.  It is up to us, and walking out with an 8lpm script and buying a different regulator does the next guy who doesn't have a computer no good at all.

Guiseppi wrote on Sep 3^rd, 2010 at 12:54pm:

I didn't mean to get an "ouch" with that post, but sometimes we have to realize that there are others out there besides ourselves and the members of this particular community.  And we have all had problems with doctors and insurance companies.  The insurance companies may never listen to us, but our doctors will/should, if they don't, it's time to find one who will.  We have to be proactive for ourselves and every one else.

Like racer said, you can buy your own regulator and the difference between a 15 lpm and 25 lpm regulator is a very distinct rapidity in pain relief, not to mention the positive side effects of not being arrested in the middle of the night for indecent exposure, or because they thought you were on drugs.   

I'm not laughing at you, really.  I've had the cops called on me several times when I was out in public, because they thought I was on drugs.

Marc wrote on Sep 3^rd, 2010 at 2:09pm:



you go, marc!!!!!!!!

Quote:


The only time I went to the ER with a cluster was pre-this site, and it was a nightmare. I went after 3 hours of unremitting KIP10. I got there, and they not only wouldn't let me walk, they strapped me down. And I had to wait hours before they'd give me O2. And then it was respiratory flow. And...even though my neuro was on call, they wouldn't call her. She finally came in at 6am, and when she found me, she got right to work. I later learned she ran a briefing for all ER doctors and nurses on CHs and their treatment. At least I was able to serve as an example of what ought not be done when a Clusterhead comes in to the ER. lance