Not diagnosed yet but O2 is working if we get a jump start with O2

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Posted by Norris Buchmeyer ( on May 07, 2001 at 01:56:22:

My son just turned 14 years of age. He started these headaches with syncope the dec23rd of 2000. We initially thought they may be seizures. But have come to find that the abrupt headaches have accompanied all his spells since december. Something Interesting: Three days before the start of the attacks, we started allergy injections as he has suffered greatly from house dust mites for all of his life. He had one a month for a couple of months then every two weeks then every few days and now at a rate of 3 or 4 a day. I'm not sure if there is a relationship but the doctors said there was not and to continue them. As of last Saturday he is not getting anymore allergy shots. But since we have gotten to the last vial of allergin last week his episode have increased to three times a day and mostly just before he goes to sleep. The pain is extremely severe and he passes out if no therapy is initiated.... each time O2 is not used to curb them. Tritains have not been useful in preventing him from passing out although I think the length is effected. It has been an exhauting week and even now I have stayed up as we had a bad night the night before because we ran out of oxygen during an attack... We were doing so well too as he was able to smile just before the O2 ran out. we have been using Maxalt but does not keep him from having an attack... The neuroligist is treating him as a patient with partial complex seisures but know this is not the correct diagnosis. MRI and EEG are negative... I have 2 questions regarding CH... One does anyone know of anyone that actually passes out... with CH's... I know after 20 attacks with him and up to three a day now that only O2 prevents them... Second can a low dose of o2 during the night prevent the big one? His head is so sore now from the attacks he is not aroused from sleep by the headache and is in severe mode before o2 can do him any good... Infact was passed out when I tried to awaken him yesterday morning.

I have shed many a tear with my wife and son this week and have for the past 3 days started using O2 and it is working well as long as I get to the attack early.

The attacks last from 20minutes to 1 1/2 hours depending on how soon we intervene and what time of day it is. The most severe ones have been late at night between 9 and 11 pm.

May God bless you all.
Peace be within you.


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