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

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