JeffC Posted October 25, 2010 Share Posted October 25, 2010 Hi to all, I've been having CH since 2000. I have been in remission since January of 2009 until Oct 12th 2010. Longest ever by FAR. Anyways, I have been taking relpax 40mg more the most part. I have between 1 (at least at 2am after I fall asleep) to 4 CH each day. Relpax stopped working altogether this cycle. I have been on a mission to get Oxygen in my household. Literally when I told my primary care dr. that I have tried, calcium blockers, anti-seizure meds, ssri's,pain killers, imatrex, etc etc and the only thing I haven't tried is botox in the optical nerve (w/c i won't do), anti psychotics, lithium and oxygen, she laughed and told me that it wasn't an option....and that I would have to go to emergency room. Thank the F'n lord I have a really dear friend that's a doctor. He is writing me a script for 02 today. I found a local place here that i can get the equipment from...so I think I'm good. My point is/ question is, why are doctors SO IGNORANT about Cluster Headaches? Why do they want to give us pills when 85% of the people that use oxygen to abort the CH are successful? I have been treated like a drug addict when asking for f'n oxygen. I could have gotten ANY painkiller (w/c doesn't even work) I would ask for...like Oxys and Vicodins...but Not Pure oxygen? WTF. What a backwards ass world we live in. Jeff From New Orleans Quote Link to comment Share on other sites More sharing options...
Hipshot Posted October 25, 2010 Share Posted October 25, 2010 WTF. What a backwards ass world we live in. You got that right. Welcome to the board. You need to make sure to use the right mask. It makes all the difference. Dan Quote Link to comment Share on other sites More sharing options...
JeffC Posted October 25, 2010 Author Share Posted October 25, 2010 What kind of mask? All I know is a Non-re breathable mask... Quote Link to comment Share on other sites More sharing options...
kaboom Posted October 26, 2010 Share Posted October 26, 2010 I could have gotten ANY painkiller (w/c doesn't even work) I would ask for...like Oxys and Vicodins...but Not Pure oxygen? WTF. What a backwards ass world we live in. True Dat. Endless frustration and pain is why I and many others are here. Welcome! Quote Link to comment Share on other sites More sharing options...
JeffC Posted October 26, 2010 Author Share Posted October 26, 2010 Thanks! I just got Oxygen! I got 7 E tanks with a regulator that goes up to 15 (it was the best they had). I'll see if the non-rebreathable mask they gave me will work. Hooooooray! I'm optimistic. Quote Link to comment Share on other sites More sharing options...
Guest Posted October 26, 2010 Share Posted October 26, 2010 if the mask they give u is insufficient there are a few things that can be done, cheapo style to improve its effectiveness if it has holes on the side u can cover with your thumb so u are breathing pure o2 and no outside air, with lpm below 10 u may empty the bag quickly, i have heard of people rigging a gallon size freezer bag on their mask for a bigger resivoir and of course if it has strap on it to fix it to your face, u may want to think of cutting them off, so you dont fall asleep with it on O2 is a life saver and it will be your new best friend! good luck and pf wishes AO Quote Link to comment Share on other sites More sharing options...
raquelinkansas Posted October 26, 2010 Share Posted October 26, 2010 I dont know why docs are so clueless. I dont know how many different doctors I saw before I was correctly diagnosed. Plus, being a woman they just assume its a migraine. (growl) > Let us know how your oxy works out! Glad you got the hook-up! Quote Link to comment Share on other sites More sharing options...
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