Monday, July 28, 2008


I began my fifth week of HBOT today. 

So what changes have I noticed? 

My CRPS, which was full body at the start of this process, seems to be mainly in my feet, hands, eyes, ears, and some in the lower legs and a little in the arms, at this point. 

Now a "typical" CRPS patient might look at having CRPS in their feet, hands, etc. as being pretty horrible. As well they should. But for those of us with full-body or "systemic" CRPS, that is actually a big improvement. A cause for celebration. 

Celebrations are all relative, as the joke goes ... 

My wife and I were sitting at a table at my high school reunion, and I kept staring at a drunken lady swigging her drink as she sat alone at a nearby table. 

My wife asked, 'Do you know her?' 

 'Yes,' I sighed,  'She's my old girlfriend.  I understand she took to drinking right after we split up those many years ago, and I hear she hasn't been sober since.' 

'My God!' says my wife, 'Who would think a person could go on celebrating that long?' 

And that's when the fight started....

Hmmm.  lol 

Anyway ... 

I was speaking at a meeting for a new CRPS group in Orlando on Saturday and someone there asked me "What is it like to have pain everywhere? Is it really head-to-toe?"

I know she hesitated asking it and even said, "if it is too personal I apologize" or something to that effect. It is a question I have been asked many times. Consider that only about 8% of all patients end up with systemic CRPS and that most patients haven't spoken to or met  many other patients, it isn't unusual for most to have never met someone with full body. I don't mind sharing my story at all, it is part of what I consider my mission, how I enjoy helping other patients and their loved ones. 

So now my pain isn't everywhere.  Right now , as I mentioned, my pain has "localized", meaning instead of being centered in the brain it seems to have gone out to the extremities and the pain is now being felt where it is supposed to be felt, in the extremities themselves. It is as if the nerves are re-learning the correct pathways again, are re-training themselves to function normally again. Maybe I am oversimplifying it but that is what it seems to me. 

I did want to answer some questions posed to me over the weekend by either patients considering the treatment or those undergoing it now.

1) Does HBOT make you tired? Absolutely. It will make you extremely tired, as if you ran a marathon. Most patients take a "hyperbaric nap" after their treatment and then sleep well again in the evening often reestablishing their REM sleep patterns. 

2) Is it normal that you feel really hungry? Yes. Your body is re-building pathways, generating new blood vessels, growing tissue, etc. I am not sure that is why but it makes sense to me. Either way, yes you will be very hungry and need to eat, especially right after your treatment. It is very important to eat fruit or something along those lines immediately following your treatment. That will also help to prevent those annoying little headaches that can sometime crop up.

3) Is ear pain a sign I can't have more treatments? Ear pain is a serious issue with regards to HBOT. Because you are constantly descending and ascending you have to use your ears as "balancers" so to speak, they allow you to equalize the pressure as you descend and ascend. There is a small percentage of patients who develop ear issues, these can be serious. If you experience ear pain, let the tech and/or Dr know right away. Don't hide this fact thinking it will go away. 

Oh oh, ok. guys. we have another one of the many thunderstorms that role through Florida this time of year. Need to get off the computer. 

If you have questions, send them to me at or leave a comment on the blog and I will try and find the answer for you.

Thanks for listening. 

Kei --- arrrrrhhhhhhh

ooops. That was a close one!

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