Pixie-elf Posted November 12, 2011 Share Posted November 12, 2011 If I didn't need a neurologist to take care of my other conditions, I would totally say screw neurology. Bare in mind, my neurologist has no idea about what I use as an alternative treatment. The hospital would not treat me at all if they found out I'm pretty sure... So, my Headache Specialist left the only place I can get treatment in April of this year. I was placed in the care of the head of neurology. Since I've been having headaches for 3 years straight, with no break, this must mean I do not have CH according to him. Because a CH sufferer has 'breaks' between clusters. Oh, and the fact that on bad days I have up to 8... Instead it might be hemicrania continua. At least that's what he thinks. I've also got a history of TMJ. He thinks that could be complicating things, so I do give him props for deciding to check it out to see if fixing that will help my headaches... But the fact is, the misinformation that doctors have on our condition makes me fecking sick. I really like my doctor, but it disappointed me SO MUCH to hear that to some doctors, us chronics don't exist. It was also a big No on trying Ketamine, I asked if he could hospitalize me and try it. The other thing he's suggested, if Medicaid would ever cover it is botox. But I don't think my problem is with the muscles/nerves. It's my freaking brain... There are no words that can tell you all how thankful I am for all of you. The fact that you're here, that you care, the information and support you all provide... All of the information you've gathered on busting, it's saved my life. I love all of you. Mystina Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted November 12, 2011 Share Posted November 12, 2011 Mystina, Hoping today is a great day for you!!!! Jeff Quote Link to comment Share on other sites More sharing options...
Ricardo Posted November 12, 2011 Share Posted November 12, 2011 Don't you hate it when you go to a doc and it seems like you have more good ideas then them? I know they sure hate it when I point it out to them Might help to get him to tell you why he's saying no to Ketamine. As far as Botox--I would bring him this study and ask him, "you really think this is a good idea?" http://www.msnbc.msn.com/id/37861005/ns/health-skin_and_beauty/t/botox-paralyzes-your-emotions-too/ Is that really the ONLY idea that he had? Has he given you the Indomethacin test? I think it is a horrible medication that should never be given to people....And you should try it! Only for a little while though, just as a diagnostic. That's my plan, one of these days I'm going to get the nerve to start taking the prescription I filled over a month ago:) What did he even say about chronics? Does he even acknowledge that you might have BOTH clusters and HC? I have to admit that for quite a while I had a doctor that I really liked, but when it came to my headaches he was a complete waste. It can actually be rough when you like the guy, took quite a while for me to give him the boot! Hope you get some pain free time, maybe even some more LSD! -Ricardo P.S. If I was there with you I would personally call him a schmuck. Just for you Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted November 12, 2011 Author Share Posted November 12, 2011 Don't you hate it when you go to a doc and it seems like you have more good ideas then them? I know they sure hate it when I point it out to them Might help to get him to tell you why he's saying no to Ketamine. As far as Botox--I would bring him this study and ask him, "you really think this is a good idea?" http://www.msnbc.msn.com/id/37861005/ns/health-skin_and_beauty/t/botox-paralyzes-your-emotions-too/ Is that really the ONLY idea that he had? Has he given you the Indomethacin test? I think it is a horrible medication that should never be given to people....And you should try it! Only for a little while though, just as a diagnostic. That's my plan, one of these days I'm going to get the nerve to start taking the prescription I filled over a month ago:) What did he even say about chronics? Does he even acknowledge that you might have BOTH clusters and HC? I have to admit that for quite a while I had a doctor that I really liked, but when it came to my headaches he was a complete waste. It can actually be rough when you like the guy, took quite a while for me to give him the boot! Hope you get some pain free time, maybe even some more LSD! -Ricardo P.S. If I was there with you I would personally call him a schmuck. Just for you He explained why he didn't think it would work for the situation, I can't remember exactly what he said, though. I wasn't really aggravated about that. The botox he kinda doubts he can get approved at all by Medicaid. The other idea he had was to send me to the Oral and Maxillofacial Surgeons to see if my TMJhttp://en.wikipedia.org/wiki/TMJD is part of the problem. I tried Indomethacin, but my body didn't tolerate it at all... I got hives and puked up blood, so no Indomethacin test again for me. The other thing is, NO anti-inflammatories, have helped my headaches really. Ibuprofen helps minor hits since I've been dosing, but if it's anything above a 2? Nope. He said I have some cluster-like symptoms, but me having them every day, with no breaks at all = not cluster headaches. From the way he explained it, it sounded like he only considered Episodic people to have real cluster headaches. His explanation was that I had to have cluster 'periods' and then 'breaks' from the clusters. Otherwise it wasn't CH. The problem is, I can't really give him the boot. Medicaid has me screwed as far as getting a new neurologist. We've tried before. So I may just have to deal with him not knowing what the hell chronic CH is. I have to have someone to deal with my other neurological conditions, so, it's not like I can just opt to not have a neurologist. The good thing is at least he's trying to find an answer, but gah. I don't have a constant headache like they say those with HC have. I've had hits on both sides. Thank y'all for the support. <3 Today is better. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted November 13, 2011 Share Posted November 13, 2011 So the head of Neurology is unaware of the existence of chronic CH and refuses to acknowledge it as a condition.... Sadly unsurprising. Quote Link to comment Share on other sites More sharing options...
tingeling Posted November 13, 2011 Share Posted November 13, 2011 What Jeebs says!! I don`t trust doc`s at all. When i brought info about O2 written by The Linde Group, Head doc of Neuro answered me this "Don`t believe everyting you read on the internet". LOOOL ;D Quote Link to comment Share on other sites More sharing options...
Ricardo Posted November 13, 2011 Share Posted November 13, 2011 Yeah I remember my old Doc telling me I didn't have clusters "because they were so rare" Quote Link to comment Share on other sites More sharing options...
tingeling Posted November 13, 2011 Share Posted November 13, 2011 Many years ago i asked for Imitrex injections, as the pill form didn`t work for me. "Oh no that`s for the severe cases". LOOOOL ;D ;D ;D Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted November 13, 2011 Author Share Posted November 13, 2011 The number of times I've had doctors tell me I couldn't have something because of x... is so silly. I really want to go back to some old doctors and show them what they were too stupid to diagnose me with and go "WHAT NOW, BITCHES?!" lmao Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted November 13, 2011 Author Share Posted November 13, 2011 Also, I'm a non-smoking woman, this also makes me unlikely to have cluster headaches! Quote Link to comment Share on other sites More sharing options...
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