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.

You go!
Keep up the fight!!!
:)

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 ?   ;)

Ginger, I Love it!!!

I agree 8lpm is just too low.  You probably need at least 15.  Let us know how you get on  :)

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.

Good luck!!  :)

If you like that 15, you'll love a 25 lpm....
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I think you'll find the difference between 8 and 15 LPM to be night and day! Your post of how you dealt with it cracked me up! ;D I have a mental pic of this wet from the pool, sweaty from the trampoline, naked guy riding amountain bike chasing a Grizzly Bear! I suspect only a fellow CH'er could see the perfect logic in that! ;)

Really hoping the higher flow reg negates the necessity for a repeat performance. Seriously, pain that high that lasts that long really really sucks. :'(

Joe

PS: Does he have you on a decent prevent yet? Verapamil, Lithium, Topomax etc?

Quote:

PS: Does he have you on a decent prevent yet? Verapamil, Lithium, Topomax etc?

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.

Although I am on a preventative med (Verapamil), for me...the jury is still out on them.  I am the only one in my family that takes one.  The others just do abortive meds (Imitrex) and they do very well and are without the side effects as well as the problem with the headaches always trying to work around the preventative.  You know what I mean?

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

Guiseppi wrote on Aug 13^th, 2010 at 11:26am:

I think you'll find the difference between 8 and 15 LPM to be night and day!

I couldn't agree more...


Quote:

Your post of how you dealt with it cracked me up! ;D I have a mental pic of this wet from the pool, sweaty from the trampoline, naked guy riding amountain bike chasing a Grizzly Bear! I suspect only a fellow CH'er could see the perfect logic in that! ;)

I'm pretty sure if it wasn't so dark he'd have seen the Grizzly hiding in the bushes while the wild man rode by  ;D

-Dennis-

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

GayleneD wrote on Sep 2^nd, 2010 at 10:07am:

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!

Hi Gaylene,

I also suffer from episodes twice a year March/April and again around Aug/Sept.  I think it is quite common to experience two cycles each year, being chronic is a different thing altogther.

Has your boyfriend ever tried oxygen?  I highly recommend he speak to his doctor about it - no side effects and very effective if started at the beginning of a hit and with a flow rate of 15lpm and up.

Have a look around the board, read, read, read, there is sure to be plenty of advice that can help him limit his pain.  Again, must stress oxygen has been a life saver for so many of us!!

Wishin you all the best,

Kate

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

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

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..

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

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

Not willing to go there myself...done my share of Doc bashing but they are operating on what little info there is on this orphan disease. SOON to change...but there it is....

Of the 8 Docs I've had prior to current neuro(even she writes 8 lpm, but enthusiastic O2 supporter )...NONE knew ANYTHING about O2 for ch...it was up to ME to educate them. Perhaps lucky, but every one assented.

It has been said numerous times by many, and especially one (sorry that I am unable to dredge from my foggy brain right now) that if you expect to sit in front of a Doctor and simply say "fix me" ...you are in for FAILURE. Educate them....and if they are unwilling to learn...fire 'em.

Learned many years ago...get the dang script....that the number on the script is MEANINGLESS...then go to ebay and git yurself a 25 lpm or higher regulator for about $33...and huff away! No angst...no anguish...everybody's happy...especially me!

Best,

Jon

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.

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.

Ouch....great point.

Joe

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

Ouch....great point. Joe

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.

Awesome, Marc.

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.   ;D

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.

Nothing detrimental in the OUCH Thomas... ;)...just a great reminder!

Joe

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

I have delivered my "high flow O2" speech to every Doc I've met since I learned about it. I DON'T start with big scary sounding flow rates because it turns them off before you get started. Large numbers like 25-50 lpm are outside of their comfort zone. I explain that we need a big, temporary blast of excess O2 and we get that only breathing waaaay more than normal O2 therapy levels - just for a few minutes. THEN I tell them that for some folks that's maybe 10-15 lpm, but for some of need much more. When their eyebrows go up, I add: Think about all the adrenaline pumping when the pain gets high. Your respiration rate climbs like you are working out - you need more flow for a short while. This is the short version of my speech, but you get the idea. When explained properly, the only responses I get are: "That makes a lot of sense" and "That's good to know." I had a chance to educate an ER crew one day when I was brought in by ambulance after pulling a "Joe" (crashed my bicycle) then had a CH in the ER. The nurse said "what do you need? I'll get the Doc"  I pointed to the O2 outlet on the wall, said non-rebreather mask. They got it going, I cranked it up to stay with me - over their objections. When they saw the pain melt away, it was a "wow" moment for them. I explained that 8 lpm won't do it and that they needed to watch and make sure that person was getting a ton of flow to breathe fast and deep. Marc

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

Guiseppi wrote on Sep 3^rd, 2010 at 5:49pm:

Nothing detrimental in the OUCH Thomas... ;)...just a great reminder! Joe

Absolutely...I agree 100%. Provincial and selfish in my thinking...28 plus yrs of this stuff and I think I know it all....NOPE...learn something new here every day.

Re the 8 docs...I'm not a complete troglodyte...they were 10-25 yrs ago...and none had any idea of O2 for ch...I like to think they knew better for the next clusterhead. If I knew then what I knew now...they would know more.

Re the folks who have no access to the internet...and this is obviously the wrong place to say..since...well..you are reading this....but  :-?

Was diagnosed in 1985 (by a dentist...the docs had NO idea). No internet as we know it now....what to do? Faced with a lack of knowledge by the docs I researched myself...public libraries, medical libraries (UW pre eminent)....It was there I learned of the NMF (Natl Migraine Foundation...now Natl Headache Foundation)...and use of O2 for ch. THOSE folks, before ch.com...saved my sanity. Unusual? Remarkable? Dunno...perhaps my training in research...but I worry that folks think too much of the internet...and that if it's not there it doesn't exist. I'm here to tell ya that it does....

All that said, and it's just defensive...Agostino, you are right. I am working on the neuro...have sent Batch's info...will see her next Jan..

AND Marc....I am in awe and humbled...you may have saved a lot of clusterheads a lot of agony...thank you brother!

Best,

Jon

Quote:

I had a chance to educate an ER crew one day when I was brought in by ambulance after pulling a "Joe" (crashed my bicycle) then had a CH in the ER. The nurse said "what do you need? I'll get the Doc"  I pointed to the O2 outlet on the wall, said non-rebreather mask. They got it going, I cranked it up to stay with me - over their objections.

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