Back again after years of silence and in reasonable control of my CH.

This story is about a bad preds. trip.
My CH exploded with several bad attach daily and impossible to keep on with injections.

Started the usual round of 2x25mg preds for 5 days. (2 years since last round)
Side effect as usual bad sleep, higher blood pressure and other normal stuff - what the heck, it's just few days and this stuff simply just break the attack after first dose. 
After 3 days I just had one attack every 24 hour.
Stopped day 5 as prescribed without tapering down. Have not been a problem last time and never heard about such thing.
Side effect now just got worse day after day after stopping.  4 days after I had a flight from DK to Asia and almost fainted before my departure.
My heart was like popping out and crazy dizzy. Called my doctor (the same clown ) who prescribed and instructed me. He told me it was quite normal if I didn't tap down over days, but on other hand, some people can handle it. Advised me to get some OTC pills for dizziness and catch my flight.
I live in Asia and everything just got worse day after day. Went to a hospital for check up on my "pump", just to rule out other nasty things..
Well, firstly CH is not known here or hard to translate into Chinese. Second, preds. Seems also to be a problem to understand and understand the side effect, I just had to explain why I took those pills,  so here we go with CT scan, ETG, 100 blood test ect ect. Now why do I need a CT scan of my brain ?  Ohh we need to find out why you have headache.  Sir, I'm well aware about why I have headache and besides I don't have headache now, I simply just feel like shirt and think I'm going to die - please check my heart and tell me it's side effect from the preds. Long and quite amusing story.

With help of another doctor on the phone, some translation every1 agreed my body did not kick start again by it self and best options was preds again with a slowly tap off to get back to normal.
That together with vitamin B1 and some other needed or not needed stuff. 
I have to say it have been my worse trip ever, at most few hrs sleep / day and when laying down my chest got some electrical spark every 10 sec. felt like my heart made double beat. Finally got some pills for my muscle  to relax and I do sleep much better now. My blood pressure is still going up and down for no reason.  Now 3 days left on 1x12 mg and I'm out and hopefully back to somehow normal.

What actually helped me to relax and get rid of the worse side effect these days, was rectal ozone Insufflation, recommended by a friend who also delivered  me O2 generator and ozone generator for that purpose. Could be other reasons of course, just felt better already after first session, so on that I'm willing to give him and his ozone the credit.

Still have one attack a day and it's OK - easy to deal with and this period will hopefully not last forever.

I got hand on some imigrane 10mg nasal powder spray last summer in France as I were out of injections. Tried one today for first time, worked as well as half shoot injection for me. Read somewhere it's cheaper than injections but all these kinda stuff is non existing here, gotta get it from DK.
Feel sorry for all the CH's here as mostly don't have any acute medz.

Hi Klaus,
It's always good to get a CT scan when suffering from
headaches, just to rule out anything else that might be
causing them.

Hoppy.

Klaus wrote on Nov 20^th, 2013 at 11:00pm:

Back again after years of silence and in reasonable control of my CH. This story is about a bad preds. trip. My CH exploded with several bad attach daily and impossible to keep on with injections. Started the usual round of 2x25mg preds for 5 days. (2 years since last round) Side effect as usual bad sleep, higher blood pressure and other normal stuff - what the heck, it's just few days and this stuff simply just break the attack after first dose.  After 3 days I just had one attack every 24 hour. Stopped day 5 as prescribed without tapering down. Have not been a problem last time and never heard about such thing. Side effect now just got worse day after day after stopping.  4 days after I had a flight from DK to Asia and almost fainted before my departure. My heart was like popping out and crazy dizzy. Called my doctor (the same clown ) who prescribed and instructed me. He told me it was quite normal if I didn't tap down over days, but on other hand, some people can handle it. Advised me to get some OTC pills for dizziness and catch my flight. I live in Asia and everything just got worse day after day. Went to a hospital for check up on my "pump", just to rule out other nasty things.. Well, firstly CH is not known here or hard to translate into Chinese. Second, preds. Seems also to be a problem to understand and understand the side effect, I just had to explain why I took those pills,  so here we go with CT scan, ETG, 100 blood test ect ect. Now why do I need a CT scan of my brain ?  Ohh we need to find out why you have headache.  Sir, I'm well aware about why I have headache and besides I don't have headache now, I simply just feel like shirt and think I'm going to die - please check my heart and tell me it's side effect from the preds. Long and quite amusing story. With help of another doctor on the phone, some translation every1 agreed my body did not kick start again by it self and best options was preds again with a slowly tap off to get back to normal. That together with vitamin B1 and some other needed or not needed stuff.  I have to say it have been my worse trip ever, at most few hrs sleep / day and when laying down my chest got some electrical spark every 10 sec. felt like my heart made double beat. Finally got some pills for my muscle  to relax and I do sleep much better now. My blood pressure is still going up and down for no reason.  Now 3 days left on 1x12 mg and I'm out and hopefully back to somehow normal. What actually helped me to relax and get rid of the worse side effect these days, was rectal ozone Insufflation, recommended by a friend who also delivered  me O2 generator and ozone generator for that purpose. Could be other reasons of course, just felt better already after first session, so on that I'm willing to give him and his ozone the credit. Still have one attack a day and it's OK - easy to deal with and this period will hopefully not last forever. I got hand on some imigrane 10mg nasal powder spray last summer in France as I were out of injections. Tried one today for first time, worked as well as half shoot injection for me. Read somewhere it's cheaper than injections but all these kinda stuff is non existing here, gotta get it from DK. Feel sorry for all the CH's here as mostly don't have any acute medz.

  This is a joke right?

       Potter

Because you report barriers  about doctors who have little knowledge & experience with Cluster, I'm going to keep my comments to working on that issue.

Many of us have had this problem. If we find a doctor who is willing to accept medical information from us, we supply the doctor with MEDICAL literature (not copies of messages posted here) to guide their treatment. We've had good success with this approach. You will have to decide whether their is a cultural barrier which might make this approach difficult or impossble.
======
Two sites for useful information: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE for informaltion on all medications (not just for Cluster).
==========
This site worth exploring in detail. Much information about specific issues treating all types of headache. Site operated by one of  the best headache doctors in this country.

In particular, he offers three books. Two are for doctors, one for the general reader but, given you limited access to informatlion, I'd suggest you buy them for yourself as well and offering them to a doctor with whom you will be working on a regular basis.
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Two books, one free, available as an e-book; second aimed as professionals. Section of many journal articles. Site worth exploring. Robbins is one of the leading headache docs in the Chicago area.
------

Print the PDF file, below. It outlines the major medications used for Cluster along with the latest evaluations of their effectivenes.
==========
I assume you are aware of the terrible problem of counterfeit medications coming out of Asia. The latest study published here revealed that between 40 & 60% of prescription medications shipped to the U.S.  individuals who had ordered them, were counterfeit.
==========
These comments are a broad response to your situation. Please feel free to ask about specific issues which you have written about.

---

O2 generators are crap. They don't go much beyond 5lpm which is useless for CH.

Also, 50mg as the initial dose for prednisone taper is usually not enough. Most use 60-80mg.

I looked this up. Apparently it is a thing. I also found a reference to the colon being considered a "third lung". And unless he plans on being in a parade, I'd be willing to bet that he doesn't want 15 lpm. :o

Shooky, I agree with you in part concerning concentrators.  They are generally ineffective for CH, but it is not due to flow rate.  There are concentrators the produce 15lpm, although they are not common.  There are a host of them that produce 10-12 lpm.  The problem with concentrators is they do not produce 100% oxygen.  Anything over 78% is acceptable, although when I was delivering them we would not leave one that produced less than 85%.  The best I ever saw on one was 91%, although that was fairly common with a Millenium unit, which produced up to 12 lpm.

Jerry

@Hoppy. Can only agree, it's not a bad thing, especially now as my dear brother recently was diagnosed with Glioblasoma multiforma.

O2 generator does not do the job for CH attack of course and I DONT want 15LPM up my a.. !
It's just to feed ozone generator with a 0.2LPM.

@Potter. It's not a joke. I'm born skeptically when it comes to "alternative" and would say most of them are Quaker. Then again, whatever people believe at it's their own business and if some individual feel better by touching magnets, eat halal popcorn or whatever it's good. I'm just sayin it was a really bad trip and still not in good shape and I just feel better with more energy after a boost in my a.. :)

Have any1 ever measure concentration percentage from a medical O2 tank ?  I bet it's more close to 95% oxygen.

@Bob, I'll forward the PDF file to some doctors I know here and hope it will be usefull.
I'm aware of whatever can be copied will be copied here but what we need is not available as counterfeit or genuine, so it's not really a concern for me.

Klaus wrote on Nov 23^rd, 2013 at 10:38am:

@Hoppy. Can only agree, it's not a bad thing, especially now as my dear brother recently was diagnosed with Glioblasoma multiforma. O2 generator does not do the job for CH attack of course and I DONT want 15LPM up my a.. ! It's just to feed ozone generator with a 0.2LPM. @Potter. It's not a joke. I'm born skeptically when it comes to "alternative" and would say most of them are Quaker. Then again, whatever people believe at it's their own business and if some individual feel better by touching magnets, eat halal popcorn or whatever it's good. I'm just sayin it was a really bad trip and still not in good shape and I just feel better with more energy after a boost in my a.. :) Have any1 ever measure concentration percentage from a medical O2 tank ?  I bet it's more close to 95% oxygen. @Bob, I'll forward the PDF file to some doctors I know here and hope it will be usefull. I'm aware of whatever can be copied will be copied here but what we need is not available as counterfeit or genuine, so it's not really a concern for me.

Whatever blows up yer skirt.

          Potter

Quote:

And unless he plans on being in a parade, I'd be willing to bet that he doesn't want 15 lpm. Shocked

Au Contaire.  We are talking pure oxygen here, not Helium.  Most of us have found 25 lpm to 45 lpm to be the 'dosage' if you will...to abort a cluster headache.  We are talking about 10 to 15 mins. of breathing with a non-rebreather mask. 

Linda_Howell wrote on Nov 24^th, 2013 at 12:44pm:

Quote: And unless he plans on being in a parade, I'd be willing to bet that he doesn't want 15 lpm. Shocked Au Contaire.  We are talking pure oxygen here, not Helium.  Most of us have found 25 lpm to 45 lpm to be the 'dosage' if you will...to abort a cluster headache.  We are talking about 10 to 15 mins. of breathing with a non-rebreather mask.

  [smiley=moonwiggle.gif] He's not breathin it he's geezin it. [smiley=moonwiggle.gif]

                  Potter

Breathing 10LPM from tank to abort.

The ozone thing does not help, prevent or abort any CH"s.  It take the worse side effect from preds.

There are several on the board, including some old timers, who have success aborting at much lower flow rates. I know Jimi was a 10 LPM boy in his hey-day. Should it ever become ineffective for you at that level, don't give up on 02 without trying a higher flow rate and using tanks! I'm hoping that never happens to you but sadly we're all familiar with how much fun the beast has at morphing and messing with us. :-/

As to the Ozone...new on me but if there's anything I've learned on this board it's to stay open minded. Otherwise we'd still be ignoring oxygen, mushrooms, vitamin D-3.....the gentleman was not trying to sell us anything, let's give him a little slack shall we? :)

Welcome back to the board Klaus, hope you catch a short go with the beast this go round.

Joe

Joe nobody was mean nor were unkind words spoken.  Pretty soon yer gonna have this board policed to death.

          Potter

This sounds like something you definitely don't want to do at 25 LPM.  [smiley=crackup.gif]

It's amusing with funny comment potter - no offense taken.  Im quite sure we all try whatever to relieve pain and feel better. Good laugh is always healthy.

Again, I'm skeptical of nature but won't rule out that ozone used properly have several health benefit,  maybe not on CH.  After digging deeper into this stuff I'm convinced it's at least good for detox.

Years back 7lpm O2 worked well for me. Now a 10lpm flow and  just 5 min will do the job.

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

    Potter

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