Brief backround.  I was 17 when this all started.  You know the drill you go from doctor to doctor because back then they didn't have a clue and girls didn't get Clusters.  It wasn't until I was in the health field and was at work one day when I got a hit did a doctor see first hand what happened to me.  At that time all I had was Fiorinal.  I was sent right from my office to see the neuro which the Doctor that I was working for had called (I was working in a hospital).  He took one look at me and I was admitted into a hospital within 2 hrs.  That was the week that I did DHE 45 treatments by IV for 7 days to try to break the cycle.  It didn't do it but it kept the pain at bay and I had my first abortive med.  That was in 89.  Prior to that I was a walking experiment trying every med known at that time.  I didn't get real help until then.  So from 77 to 89 I basically had nothing that worked other then the drugs back then that never really worked to being with.  I came out of the hospital with DHE 45 injections using 2 a day until my cycle broke which if anything Dr. Silberstein got them down from May-Sept to 6-8 weeks so I'm thankful for that. 

What I wanted to ask is has anyone ever noticed that they have a low Carbon Dioxide level all the time?  I mean Abnormal.  This has been for years maybe 20. 

I have been racking my brain trying to figure out why this cycle started and I came up with a couple of things.  One is the stress that I was under.  The second could of been the starting of 5Http which plays on the Serotonin levels or it could have been the combination of things.  I have never came up with a clear cut reason why since I have never found my triggers.  I have never found a preventive that works so we rely on abortives. 

There are many reasons why one could have a low Carbon Dioxide level just wondering from the experts if any of those causes could correlate with why we could get the Cluster?

Sami

Wow, hoping Bob will pipe in on this one. I haven't ever been told I had low carbon dioxide levels, but I also don't know if that was specifically checked.

Joe

Hi Joe,

I get copies of all my labs and have for years.  I don't rely on a Doctor telling me "All tests are normal"  because my normal isn't your normal and it's taken years for my doctor to catch on.

Case in point.  My TSH is <0.001 which on the labs I should be hyper yet I'm far from it because my other labs show even with this TSH I still needed more meds not less. 

I have also had problems with Adrenals (that's why I was on steroids for 2 yrs) and that is another reason why Carbon Dioxide could be low.


I see that some believe that a sleeping disorder could be the blame of some of the cluster attacks but that I believe would be from a high level of carbon dioxide not a constance low level?

I know my metabolism is affected but it that due to not enough oxygen in my system?

I also know that when I travel and the altitude changes it can trigger a cluster for me.

Just thinking......

Sami

I know some have been sent for "oxygen saturation" studies before their doc's would prescribe oxygen. Several complained that when their 02 levels came back "normal" the doc wouldn't prescribe the oxygen.

Some have tried using low flow oxygen overnight as a preventative measure, figuring maybe a dip in 02 levels was causing the nite time attacks, none had any success. The fact that oxygen works to abort our attacks isn't related to our oxygen levels being low. It's  just that hyper ventilating with pure oxygen, does something to abort the attacks!

Bob Johnson has a post he puts up occasionally warning of the dangers of spending too much time trying to figure out the why! It's such a complex and nonsensical disorder, lithium works for me, not for you, same with verapamil, topmax etc. If we all have the same disorder, one med should work for all of us! Sadly, it's a whsiker more complex then that. Do continue your research as to individual triggers, I find I can lessen the number of hits by avoiding my triggers while in cycle. Beyond that, it's a vast unknown! ;)

Joe