Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 Hi Terry, >>Rule out temporal s/l *eye-uritis*<< How about temporal arteritis? Just one possibility. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2009 Report Share Posted September 3, 2009 I have to agree with . I had my first decompression in 1990. I suffered 24/7 headaches for 9 years, guess what, they were diagnosed as migraines. I was told I was cured from Chiari, they fixed for me. Everything I could read about migraines told me they don't last for long periods of time. 1990 was lonely. We didn't have the net but when we finally bought a computer I started surfing. I asked for a second opinion and they told me to see Dr. Milhorat. They also said that he wouldn't be able to do anything for me because they did such a great decompression. I really hate the word migraine. It gives me a headache when I hear it. (clenching teeth) When we did get the computer the first support group I joined was on Migraines, they had me so convinced I didn't have Chiari anymore. If you feel something isn't right, please ask for that second opinion and see an expert. Kathleen Hi All I don't want to start any turmoil, but I keep seeing the term MIGRAINE used here and it just makes me cringe. I think it downplays and trivializes what we as Chiarians actually live with and live through. For me, it is so important to understand what is actually going on inside my head. I go to a PCP group with one doc who is considered a " Headache Specialist. " He keeps a big sign in his " special headache room " that lists the symptoms of a migraine in its aura. I have to say, that everything on the list is what I live with everyday (but I could add many more things to that list). I went home one day after a frustrating visit to his office, and researched migraines. The term MIGRAINE is use for headaches that HAVE NO OTHER KNOWN CAUSE. It is a diagnosis of EXCLUSION. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2009 Report Share Posted September 3, 2009 I'd like to continue just a bit as to why I object to this term so much. Migraines are headaches....inflammation of the blood vessels inside your head. Chiari is much more complicated. I got a random email from a friend that was written by a mom in some far away community that thinks the Gardysil vaccine caused her 12 year old (now 14) daughter to develop POTS syndrome. She was warning other mom's to consider the side effects of the vaccine. Something in her email really struck me.....the girl has peripheral vision deficits, daily vomiting and constant fatigue, etc. It has basically destroyed her young life. Anyway, this email mentioned many other symptoms besides the POTS, so I wrote to the mom directly, suspecting or at least thinking chiari should be checked for. Long story short, her daughter has actually been told TWICE she has Chiari as per two MRI's, and yet this mother has been told that chiari could NEVER cause cardiac symptoms. Chiari can and does cause brain stem compression, which certainly can cause POTS, as many of us personally know very well. This mom happens to be personal friends with the Neurologist that has completely dismissed Chiari as a diagnosis, telling her it could not cause the POTS or any of her other NEURO symptoms. The mother ended up angry at me, that I asked her to take her daughter to a specialist. I had to settle for knowing that at least I put the question in her mind and if her daughter gets worse, perhaps she will find a specialist to take her to. She went all the way to Virginia from Pittsburgh for a cardiac specialist, but will not see the Chiari doc right here at the hospital she works in everyday. Just my thoughts on why the term migraine can be so detrimental. Many Blessings in Pittsburgh > > I have to agree with . I had my first decompression in 1990. I > suffered 24/7 headaches for 9 years, guess what, they were diagnosed as > migraines. I was told I was cured from Chiari, they fixed for me. Everything > I could read about migraines told me they don't last for long periods of > time. > > 1990 was lonely. We didn't have the net but when we finally bought a > computer I started surfing. I asked for a second opinion and they told me to > see Dr. Milhorat. They also said that he wouldn't be able to do anything for > me because they did such a great decompression. > > I really hate the word migraine. It gives me a headache when I hear it. > (clenching teeth) > > When we did get the computer the first support group I joined was on > Migraines, they had me so convinced I didn't have Chiari anymore. If you > feel something isn't right, please ask for that second opinion and see an > expert. > > Kathleen > > Hi All > > I don't want to start any turmoil, but I keep seeing the term MIGRAINE used > here and it just makes me cringe. I think it downplays and trivializes what > we as Chiarians actually live with and live through. For me, it is so > important to understand what is actually going on inside my head. > > I go to a PCP group with one doc who is considered a " Headache Specialist. " > He keeps a big sign in his " special headache room " that lists the symptoms > of a migraine in its aura. I have to say, that everything on the list is > what I live with everyday (but I could add many more things to that list). > > I went home one day after a frustrating visit to his office, and researched > migraines. The term MIGRAINE is use for headaches that HAVE NO OTHER KNOWN > CAUSE. It is a diagnosis of EXCLUSION. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2009 Report Share Posted September 3, 2009 I started to chuckle to myself when i started to read the messages on " migraines " . I was decompressed in 06 and before the decompression they kept telling me they were migraines and i kept telling them ...NO, i have had a migraine this isn't that. So after a year on migraine meds they did my decompression. Since my decompression...for a short time my " head pain " , as i choose to call it, was gone, filled with dizzy spells and other issues, now it's all back. I went to my SSD hearing last week and they kept talking about my " headaches " and i would answer " well Your Honor my head pain is.... " I told my husband i really had an issue with the label head aches or migraines because i knew as well as i know i am sitting here that my issues are not migraines. Now i read these messages. Every time i have a problem or an issue that i think is all mine and in my head it inevitable comes up on this site in a short time. I love this group...i love knowing that if i am " nuts " there are at least 300,000 of us (lol) Have a wonderful and pain-free evening if at all possible Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2009 Report Share Posted September 3, 2009 Thought I would chime in on this topic....when I was in High School (39 now), I started having migraines. They were attributed to artificial sweeteners, by a very smart eye doctor at the time. He was right...even now, if I ingest that stuff, I will lose my vision, vomit, and have a God awful headache, but one that is no way related to a Chiari headache. I can tell the difference from all sorts of headaches. If I don't have coffee in the morning, I get a tension headache. I get another type of headache from my TMJ problems, but just for the record....there is no headache like a Chiari headache. It is very easy for me to differentiate from that. It is always in the back of my skull, my ears feel like they are about to explode at the same time, and it is painful,achy pressure....atleast that's how it feels to me, I know everyone is different. I went to this ridiculous neurologist who kept telling me that all of my problems were migraine related. He would not listen. The fact that I know what causes migraines in me (and for 23 years), and I will never get them unless I ingest any of the artificial sweeteners, I feel like he should have listened and taken me seriously. Does anyone else get migranes from artificial sweeteners? ~ Pam F. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2009 Report Share Posted September 4, 2009 My insight too: I get wicked migraines from artificial sweeteners like Pam - very sudden, major painful, nauseating migraines. And I can't see either. I haven't had sweeteners in years but unfortunately still get migraines. I was diagnosed with " chronic migraines " by the pain management dr. here 2 years ago. I do get migraine and ACM headaches and tension headaches and rebound headaches and... you get the idea. I get all kinds!!! The NS I saw locally said the ACM headaches qualify as a basilar migraine. My ACM headaches aren't relieved by the Maxalt that helps my regular migraines. And the ACMs last MUCH longer - days... So maybe migraine is the right word, but we need to add " Basilar " to it? Cassandra Ontario Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2009 Report Share Posted September 4, 2009 My insight too: I get wicked migraines from artificial sweeteners like Pam - very sudden, major painful, nauseating migraines. And I can't see either. I haven't had sweeteners in years but unfortunately still get migraines. I was diagnosed with " chronic migraines " by the pain management dr. here 2 years ago. I do get migraine and ACM headaches and tension headaches and rebound headaches and... you get the idea. I get all kinds!!! The NS I saw locally said the ACM headaches qualify as a basilar migraine. My ACM headaches aren't relieved by the Maxalt that helps my regular migraines. And the ACMs last MUCH longer - days... So maybe migraine is the right word, but we need to add " Basilar " to it? Cassandra Ontario Canada Quote Link to comment Share on other sites More sharing options...
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