Comments on: Popular ways to misdiagnose Hemicrania Continua http://headacheandmigrainenews.com/popular-ways-to-misdiagnose-hemicrania-continua/ Thoughts and information about the latest news in the world of migraine, cluster headache and other headache treatment around the world. Mon, 06 Feb 2012 17:36:29 +0000 hourly 1 http://wordpress.org/?v=3.1.3 By: Crz http://headacheandmigrainenews.com/popular-ways-to-misdiagnose-hemicrania-continua/comment-page-1/#comment-140549 Crz Tue, 29 Nov 2011 20:37:55 +0000 http://headacheandmigrainenews.com/?p=999#comment-140549 Huh. Not one of the misdiagnoses listed have to do with being overweight. First, I was diagnosed with sinus infection and was stuffed full of prednisone and antibiotics, which caused my weight to increase 30%. After that, every doctor I saw said I had a headache because I was fat, even though I didn't gain the weight until after I got sick. I did not know that being overweight could cause constant, severly debilitating headaches, but it must be so because that was the first (and usually only) diagnosis that I got from five different doctors. After several years I eventually found a doctor who diagnosed me with hemicrania. I have the condition under control, but I still get flare ups and it interferes with my life. The whole experience left me with a very negative opinion of doctors. Huh. Not one of the misdiagnoses listed have to do with being overweight. First, I was diagnosed with sinus infection and was stuffed full of prednisone and antibiotics, which caused my weight to increase 30%. After that, every doctor I saw said I had a headache because I was fat, even though I didn’t gain the weight until after I got sick. I did not know that being overweight could cause constant, severly debilitating headaches, but it must be so because that was the first (and usually only) diagnosis that I got from five different doctors. After several years I eventually found a doctor who diagnosed me with hemicrania. I have the condition under control, but I still get flare ups and it interferes with my life. The whole experience left me with a very negative opinion of doctors.

]]> By: Jeff http://headacheandmigrainenews.com/popular-ways-to-misdiagnose-hemicrania-continua/comment-page-1/#comment-117202 Jeff Sat, 18 Jun 2011 17:47:08 +0000 http://headacheandmigrainenews.com/?p=999#comment-117202 Hi, I have HC, so 3 Drs. Say. Was on 300 mg of indocin, 250mg of topamax for two hrs. No relief. Dr. 3 took me off those 2 drugs and put me on melatonin 10 mg tr, daily and in one week the HC was goon for two years. But now they are back... Well I had 14 months of pain free, clear headed life! Good luck with the topamax, nasty stuff. It might work for you! Hi, I have HC, so 3 Drs. Say. Was on 300 mg of indocin, 250mg of topamax for two hrs. No relief. Dr. 3 took me off those 2 drugs and put me on melatonin 10 mg tr, daily and in one week the HC was goon for two years. But now they are back… Well I had 14 months of pain free, clear headed life! Good luck with the topamax, nasty stuff. It might work for you!

]]> By: Anne http://headacheandmigrainenews.com/popular-ways-to-misdiagnose-hemicrania-continua/comment-page-1/#comment-113739 Anne Thu, 19 May 2011 11:34:10 +0000 http://headacheandmigrainenews.com/?p=999#comment-113739 Nikolee: Injections are worth taking a shot! I get injections in my face of sensorcaine and steroids. I get them in three locations on my face: in the notch on my eyebrows, on my cheek bones close to my nose, and on my chin. They are painful but not as painful as hemicrania. Some times I get small bruises and the injection site swells a little. Your face feels numb like a dental freezing all over. Its a good idea to take 800mg of ibuprfen an hour before the injections. The pain relief is immediate and complete. At first I passed out because my blood pressure dropped from the pain relief. The relief only lasted a few days after the first injections but each time I get them the pain relief lasts longer. I've been getting the injections for two years now and the relief is lasting for three months on the left side and six months on the right. I have had pain on the left for seventeen years and pain on the right for eight. I still take verapamil and low dose topiramate all the time and when the injections wear off I take indomethacin until I see the neurologist again. I am now virtually pain free for months at a time. I have a life again. I haven't been hospitalized in a year and a half. I haven't had any more surgeries. I am no longer taking opiates, cessamet, oxcarbazabine, gabapentin, nortriptyline or daily indomethacin. My stomach no longer bleeds and I'm not depressed. I don't remember the last time I threw up. I couldn't even feel the first injections because my pain was so bad that all I felt was gratitude and relief. I only feel them now because I am in so little pain. I am going back to school, I am playing with my son, and I wake up laughing in the morning. Yesterday I baked muffins and gardened. The risks are low and the rewards very, very high. Anne Nikolee: Injections are worth taking a shot!
I get injections in my face of sensorcaine and steroids. I get them in three locations on my face: in the notch on my eyebrows, on my cheek bones close to my nose, and on my chin. They are painful but not as painful as hemicrania. Some times I get small bruises and the injection site swells a little. Your face feels numb like a dental freezing all over. Its a good idea to take 800mg of ibuprfen an hour before the injections. The pain relief is immediate and complete. At first I passed out because my blood pressure dropped from the pain relief. The relief only lasted a few days after the first injections but each time I get them the pain relief lasts longer. I’ve been getting the injections for two years now and the relief is lasting for three months on the left side and six months on the right. I have had pain on the left for seventeen years and pain on the right for eight. I still take verapamil and low dose topiramate all the time and when the injections wear off I take indomethacin until I see the neurologist again. I am now virtually pain free for months at a time. I have a life again. I haven’t been hospitalized in a year and a half. I haven’t had any more surgeries. I am no longer taking opiates, cessamet, oxcarbazabine, gabapentin, nortriptyline or daily indomethacin. My stomach no longer bleeds and I’m not depressed. I don’t remember the last time I threw up.
I couldn’t even feel the first injections because my pain was so bad that all I felt was gratitude and relief. I only feel them now because I am in so little pain.
I am going back to school, I am playing with my son, and I wake up laughing in the morning. Yesterday I baked muffins and gardened. The risks are low and the rewards very, very high.
Anne

]]> By: simon lovett http://headacheandmigrainenews.com/popular-ways-to-misdiagnose-hemicrania-continua/comment-page-1/#comment-112947 simon lovett Sat, 14 May 2011 15:10:22 +0000 http://headacheandmigrainenews.com/?p=999#comment-112947 Has anyone tried Mexitil?After being infused with Lignovaine during a 10 day stay in Hospital the Consultant suggested this treatment to mirror the infusion.I have been currently taking this for 4 weeks now and have not really impacted.Last week i had horrific 4 days continual Hemicrania and Suna.As this drug is Toxic,had to practically give up coffee,smoking and alchohol all in a short space of time.The monastic l;ife awaits!!!!! Has anyone tried Mexitil?After being infused with Lignovaine during a 10 day stay in Hospital the Consultant suggested this treatment to mirror the infusion.I have been currently taking this for 4 weeks now and have not really impacted.Last week i had horrific 4 days continual Hemicrania and Suna.As this drug is Toxic,had to practically give up coffee,smoking and alchohol all in a short space of time.The monastic l;ife awaits!!!!!

]]> By: Nikolee http://headacheandmigrainenews.com/popular-ways-to-misdiagnose-hemicrania-continua/comment-page-1/#comment-112599 Nikolee Tue, 10 May 2011 23:36:44 +0000 http://headacheandmigrainenews.com/?p=999#comment-112599 Hi Everyone, I started with severe head pain early Feb that has never gone away, at the worst peak I was in hospital for 3 weeks, I had a lumbar puncture so that didn't help the headache! I'm only 28 and never had pains in my head like this before. My specialist has just put me on Indometacin & Omeprazole, I'm a bit worried as I aleady have stomach adhesions, so far they don't seem to be doing much the constant pain is still there (however I've never responded to pain relief well including morphine) My Specislist wants me to go back to review next week, he has suggested the injections, I'm a little nervous... I've been in and out of hospital for years due to my stomach but never had injections in my head, can anyone let me know if they hurt and what to expect? I would be really grateful!! Thanks Nikole Hi Everyone,

I started with severe head pain early Feb that has never gone away, at the worst peak I was in hospital for 3 weeks, I had a lumbar puncture so that didn’t help the headache!
I’m only 28 and never had pains in my head like this before. My specialist has just put me on Indometacin & Omeprazole, I’m a bit worried as I aleady have stomach adhesions, so far they don’t seem to be doing much the constant pain is still there (however I’ve never responded to pain relief well including morphine)

My Specislist wants me to go back to review next week, he has suggested the injections, I’m a little nervous… I’ve been in and out of hospital for years due to my stomach but never had injections in my head, can anyone let me know if they hurt and what to expect? I would be really grateful!!

Thanks
Nikole

]]> By: katrina http://headacheandmigrainenews.com/popular-ways-to-misdiagnose-hemicrania-continua/comment-page-1/#comment-105925 katrina Fri, 18 Feb 2011 04:30:44 +0000 http://headacheandmigrainenews.com/?p=999#comment-105925 Hi Melissa, How is your daughter doing with the Topamax? Our 15 year old was just diagnosed with HC & has daily unilateral headaches for greater than 2 years without relief. We are on Indocin now (3x day) & if she does not obtain relief by Sunday we are switching to Topamax. Just wondering how your daughter is doing, if she is pain free at all and if the diagnosis is the same. Thanks for your response. Hi Melissa,
How is your daughter doing with the Topamax? Our 15 year old was just diagnosed with HC & has daily unilateral headaches for greater than 2 years without relief. We are on Indocin now (3x day) & if she does not obtain relief by Sunday we are switching to Topamax. Just wondering how your daughter is doing, if she is pain free at all and if the diagnosis is the same.
Thanks for your response.

]]> By: Marsha http://headacheandmigrainenews.com/popular-ways-to-misdiagnose-hemicrania-continua/comment-page-1/#comment-103834 Marsha Fri, 28 Jan 2011 19:27:04 +0000 http://headacheandmigrainenews.com/?p=999#comment-103834 Anne, Metamusil is only fiber. It will not protect your stomach against ulcers. I am on a few different medications now since my first two ulcers from Indocin. I hope I am now able to tolerate the Indocin better than last time. It's a lower dose, but the only thing that keeps the HC away. Anne,
Metamusil is only fiber. It will not protect your stomach against ulcers. I am on a few different medications now since my first two ulcers from Indocin. I hope I am now able to tolerate the Indocin better than last time. It’s a lower dose, but the only thing that keeps the HC away.

]]> By: Anne Jones http://headacheandmigrainenews.com/popular-ways-to-misdiagnose-hemicrania-continua/comment-page-1/#comment-103487 Anne Jones Tue, 25 Jan 2011 21:06:18 +0000 http://headacheandmigrainenews.com/?p=999#comment-103487 I have a friend whose daughter has recently been diagnosed with the condition. The drug they use to clear it up is hard on your guts but if you take metamucsile with phsyllium it should help your stomach with the effects the drug has on the stomach lining. I have a friend whose daughter has recently been diagnosed with the condition. The drug they use to clear it up is hard on your guts but if you take metamucsile with phsyllium it should help your stomach with the effects the drug has on the stomach lining.

]]> By: Paul http://headacheandmigrainenews.com/popular-ways-to-misdiagnose-hemicrania-continua/comment-page-1/#comment-102555 Paul Mon, 17 Jan 2011 18:57:03 +0000 http://headacheandmigrainenews.com/?p=999#comment-102555 I have had a headache for 2.5 years, been diagnosied as Occipital Neurlagia, nerve blocks, topomax, Physical Therapy, nerotin, nothing worked, got a new diagnosis of HC, up to 125ml of indo 4x daily with limited results, been taking indo for 4 months, starting to look for other idea's I have had a headache for 2.5 years, been diagnosied as Occipital Neurlagia, nerve blocks, topomax, Physical Therapy, nerotin, nothing worked, got a new diagnosis of HC, up to 125ml of indo 4x daily with limited results, been taking indo for 4 months, starting to look for other idea’s

]]> By: simon lovett http://headacheandmigrainenews.com/popular-ways-to-misdiagnose-hemicrania-continua/comment-page-1/#comment-101392 simon lovett Thu, 06 Jan 2011 19:52:59 +0000 http://headacheandmigrainenews.com/?p=999#comment-101392 Good Evening Scott, I am surprised you are not taking Indometacin aswell as Topiramate.Hemicrania Continua pain will disappear immediatly with Indometacin.Topiramate is only a preventitve Migraine drug and expains why you are in so much pain. Good Evening Scott,
I am surprised you are not taking Indometacin aswell as Topiramate.Hemicrania Continua pain will disappear immediatly with Indometacin.Topiramate is only a preventitve Migraine drug and expains why you are in so much pain.

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