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Posted by Graham ( on August 29, 1999 at 21:07:48:

I would like to take this opportunity to thank all the people who replied to my message (CLUSTERS-PLEASE HELP AND COMMENT) posted on the 27th (if you havenít read it please take time to read it and reply if at all possible-I would be very grateful).

I think itís fair to say that I am now a fully paid up member of the cluster club. Of course, I havenít been confirmed by a doctor yet, but I guess itís just a matter of time (see follow-ups to previous message). This may sound strange, but in a way I am glad that I now know that I am a cluster sufferer. After nearly four years of non-stop headaches with no clue as to the nature or cause of them, I was getting extremely frustrated and worried to say the least. I was beginning to think that I was only one lucky enough on this planet to suffer from these headbangers!!!! Just knowing that I am not alone in my suffering has been a massive lift (not that I wish CHís on anybody), and to tell you the truth on Saturday after reading your replies, and more information on clusters, I was skipping around and smiling like a child with a new toy! STRANGE OR WHAT! Itís also been great reading all the alternative approaches I could try to reduce the headaches, not only the ones in your responses, but in the other messages on the board. I will be trying them.

IVE GOT AN INTERESTING IDEA: When I was at school I was very keen on bodybuilding. I used to do loads of reading about training techniques, nutrition and the use of food supplements to help me in my cause. I tried all sorts of supplements from protein powders to natural growth hormone releasers. One of the best and most basic of supplements that I used to consume was desiccated liver with Hemoglobin (freeze-dried compressed liver tablets). From what I can remember (bearing in mind that Ive forgotten a lot of what I used to know!!!) this supplement increases the amount of iron and Hemoglobin in the blood. Hemoglobin is an iron-containing protein that transports the oxygen we breathe in our blood. The idea was that if you consumed this supplement you would increase the oxygen carrying efficiency of your blood. Subsequently, this gave you more stamina so you could train harder, thus leading to more muscle . . . .etc. Now this stuff worked for me. No, I did not suddenly start to gain vast amounts of muscle, but I did have a little more stamina. In general, I used to get slightly less fatigued in daily life when I was taking it than when I was not. From what I have learnt and deduced over the past few days about CHís, low O2 levels in the blood is a factor with clusters. . . hence taking oxygen during the onset of an attack. Maybe, this supplement could help me. This maybe ignorance on my part, and I donít happen to be a doctor (you may be shaking your head while you are reading this), but Iím going to give it a try. The tablets taste awful and you have to consume a fair number of them, but they are completely harmless and what have I got to lose. I will let you know when it doesnít work!!!!

Anyway, back to reality. I now armed to the teeth with cluster info and your replies to my message. So, on Tuesday Iím off to harass the specialist at the hospital (not the neurosurgeon but the guy whoís referred me to one because he couldnít help) to get me put down on the neuro-docís waiting list as extremely urgent. He may also decide to try me on some of the medication mentioned in the information I now have. Should I start building a nice little cabinet for my oxygen tank I wonder? I will let you know how I get on.

Again, many thanks.

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