Clonidine can cause headaches, especially when taken everyday and then stopped. I am on this medication at 48 y.o… My experience with Clonidine wean her off them, that’s the cause of the headaches. Sorry I didn’t get to you sooner… Xxxx
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Sounds familiar, I also have autoimmune disease - MCTD is the latest dx. I have been able to manage all the crazy symptoms without the intense drugs by following my own version of the AIP. I learned to deal with pain through sort of meditation and medical marijuana. Now that they have CBD it is working well too. The most crucial thing for my headaches was the recommendation of a soft collar. I use it whenever I get in a vehicle and for sleep. When things get worse , alternating heat and ice packs, Ben Gay or Tiger Balm, and Tylenol Arthritis plus intense meditation gets me through. My headaches are down to 1 or 2 four-day episodes from 6+. EDIT episodes per month.
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It’s nice to manage pain and other symptoms without medication!! Love it! I love the CBD without THC, sooo helpful!
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I don’t know if it is the Chiari or other neurological issue (I also have a hemangioma in my temporal lobe w/seizures) but I cannot handle thc anymore. I get serious chills and shakes and faintness. Unfortunately the CBD only is not helping much with appetite.
So hard for a parent to see their child suffer, it is probably worse than one’s own pain. Such hard decision for you to make.
My intense headaches and frequent vomiting episodes started very young too. Back then they had no MRIs I guess. They thought mine were from dengue fever, but I wonder if it was the Chiari and my other brain malformation. My mother gave me so many different drugs - none prescribed for me, btw. None really worked. The only thing positive I can say for my early experiences, I learned how to manage pain early and it probably helped me throughout my life.
She is so lucky to have you on her side and already using meditation. I wonder if CBD is advocated for children?
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Yes, it IS advocated by Naturopaths, possibly a Regular doctors would okay it, since it has no psychological effects
Hi my son was diagnosed a year ago with chiari he was only 4 years old we found out September 12th we had are first meeting with chiari specialists in October because are dr had never even heard of chiari in October we went to the Mayo clinic in Rochester Minnesota and met with a neurologist and a neurosurgeon are neurosurgeon actually told me it was one of the worst chiari malformations he had seen in a child his age they decided he needed the surgery it was honestly one of the best things we could have done he couldn’t tell us he was in pain he did alot of hanging out in bed or laying on the couch when he was little I just thought he was my chill little man cause his brothers are rowdy nope turns out he was just in a crap tone of pain and the only reason we found it was because of a headache are neurosurgeon said there is only a slight chance that he could need a second surgery due to growing but he said it is very unlikely as a mommy we always try to do whats best honestly in my opinion I wouldn’t want to wait I have seen such a huge improvement in him its amazing seeing him get to act and be like a little boy
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So sorry to hear she struggles with these terrible symptoms. Benadryl and magnesium helps with migraine pain. Prayers for better health!
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Magnesium helps head pain! Prayers your way!
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Also if it hasn’t been checked see if she is absorbing vitamin D and her meds. I wasn’t and finally had L-Metholfolate (folic acid) added to my drug regimens and life is better today!!
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