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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Just Need to Talk http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1242756547 Message started by voc417 on May 19th, 2009 at 2:09pm |
Title: Just Need to Talk Post by voc417 on May 19th, 2009 at 2:09pm
I just need to tell someone my story and get it off my chest. It's about the same as everyone else's, only the names have been changed to protect the innocent. I have had CH's for the past 18 years and only diagnosed with them for about 5 years. My original neurologist who diagnosed me told me what they were and put me on topamax and verapamil, then moved to a different part of the state. My next neurologist told me they were just migraines (even though I only get them 2x a year, they are only on the right side of my head, they only last for an hour or 2, they make my eyelid droop, etc) and told me to quit smoking. My family doc who had seen me in the middle of an attack knew what they were and would give me steroid bursts to shorten the cycle, and he prescribed me O2. unfortunately the oxygen didn't work for me.
I am now in my 3rd week of a pain in the ass at least 3 times a day cycle, and finally my neurologist believes they are cluster headaches. he just put me on 500mg depakote 2 times a day, but also gave me a shit load of stadol, which as many of you know, doesn't do a damn thing except get you stoned. my wife got me some capsaicin nasal spray, which does help with the shadows, but I have yet to try it on a full blown attack (she just picked it up for me an hour ago). anyway, I just wanted to whine and I'm sure my wife is tired of me doing it (even though she says she's fine with me complaining). thanks for listening. |
Title: Re: Just Need to Talk Post by QnHeartMM on May 19th, 2009 at 3:24pm
Voc - you mentioned that you've tried o2 before and it didn't work. Our experience has been here that many people did not have luck but had not been coached on how to use it. The masks they give you are not adequate and neither is the normally prescribed flowrate. Over to the left is the menu bar - check out the yellow 'oxygen info' (if you haven't already) and see how others are using it. I'm sure most anyone here would be willing to coach you further about "non-rebreather masks" and flow rates.
Hope this helps. o2 made a huge difference for my husband Guiseppi. Christy |
Title: Re: Just Need to Talk Post by Batch on May 19th, 2009 at 5:16pm
Well said Christy!
Voc... Christy is spot on... Give oxygen therapy another try... Check your email. Take care, V/R, Batch |
Title: Re: Just Need to Talk Post by voc417 on May 20th, 2009 at 9:40am
Thanks everyone. I was really just bitching because I needed to, but it's nice to have people who have knowledge answer back. I didn't know that there was a Michigan Headache & Neurological Institute. I live in michigan and that is a place I'm going to check out. Thanks again to all.
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Title: Re: Just Need to Talk Post by just-squiggles on May 20th, 2009 at 12:01pm
I would advise calling the Michigan Headache & Neurological Institute,
even if you can not go there,they may be able to reccomend a CH wise doc in your area,a referal from them may even get you an appointment sooner..maybe not but it's worth a try. Secondly,as above,TRY O2 AGAIN!!!!!!!!!! There is always someone here to talk to, Good Luck |
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