Chiari Online Support Group

Chiari post op long term pain and chronic migrains

I’ve been dealing with this for a life time . But for Ten years I have had a migraine everyday and pain every day and I recently gave myself Serrano in poisonings with the migraine medicine. I just had to detox myself in the last 5 days. It was aweful but now that I’m coming out of it I need help learning to cope with it . Honestly I’m having a hard time finding a reason every day to keep going. Does anyone have any advice on how to survive this daily hell

Wow! God bless you :pray: Ten years is a very long time and I must be honest, I thought my daughter’s 6 month headache was (is) far too long. I can’t even imagine. My daughter was diagnosed in August 2019. Before then, she had headaches but they came and went. This time she literally has had a headache- nonstop- since July. . So, I have a few questions, if I may ask. Did you have the headache before surgery? What other neurological symptoms did/do you have ( both before and after surgery)? I am very curious about your condition.
Also, I would like to tell you that I will be praying for you. I’m so sorry you are suffering still. Have you tried essential oils? Acupressure? I use both on my daughter although their relief is short lived, it does help her some. Please forgive me if my questions offend you, that is certainly not my intention. I am only a desperate mom looking for answers for my child that seem so hard to come by with the medical community. God bless you and may He give you some relief and rest tonight :purple_heart:. Angel

The headache started permanently a yeah before the surgery I also had photo bLindness and insomnia neuropathy and would periodically drop things and go numb . Post pop my symptoms lessened but woth any interuption to the routine I have built they return as before. And still have periodic numbness and extreme pain and migraine days with no definitive reason for them.

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Please forgive my following typos below. I’m typing on my ipad w/o my glasses. (I’m used to a keyboard.)
First I am very sorry you are going through this. I used to have them daily for years also, but somedays I am headache free now. I take calcium magnesium daily plus a multi vitamin. I drink extra water. I limit my salt. Salt causes me to swell &'swelling causes me to hurt; just like a weather front can. I take Baclofen, a muscle relaxer, 3 times a day.

Have you tried physical or occupational therapy (PT or OT)? Very few doctors in my area know about chiari with syrinx, but I was blessed to have had several PTs that knew about chiari. They taught me stretches for my neck, back & spine. They stressed to not do any exercise that puts a strain on my neck or upper spine… I have a small roller ball that I rub my neck, head & shoulders with when it hurts. I use stretch bands to exercise with.

I sleep on 2 pillows (1 is almost flat) so I can support my neck and shoulders w/o raising my neck up too high. I try to find something relaxing to do when the pain is bad like watch TV, read, listen to music, go outside, etc. I have started several new hobbies. I now love making soap on my good days. I go outside and soak up some sunshine if the weather permits. I find something to laugh about almost daily.

Some people like ice packs, but I prefer a heating pad.

Reasons to live: Over the next few days make a list of the good things in your life. The things you are thankful for. The things you can do. When you feel bad, down, or alone, look at that list. God made you for a purpose. He is always with you.

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