I felt the same funny how hair can weight so much but it can cause pain .....I kept mine tied up on my head and it was only to my shoulders....plus, post op it was on to my shoulders in front of my ears....lol....the rest was shaved,.,....so not as heavy.....but it did get heavy with time.....
Talk to your Dr about related conditions like Ehlers -Danlos* as it may be behind your tremors and sleep issues....I found taking an antihistamine helps me with sleeping and relives the PND issues I have always had,,,,,
As for the tremors...EDS* can cause malabsorption of vitamins and minerals....so have blood work done to check B12's and D's as well as magnesium and potassium levels....
Hope that helps....keep us posted on your progress.
I am sorry to hear about your recent symptoms, as it sounds like you are really struggling. The intense head pain is probably your worst to deal with on a day to day basis. But then not getting sound sleep must just makes the pain worse. Some days - not always though - I drink an extra cup of black coffee. Sometimes caffeine makes me feel better. Another interesting thing I get from ****'s sporting goods. Usually at the cashier line they have jelly beans with caffeine in them for runners to use for energy. Do you use any meds for headaches? The other odd thing that seems to soothe my headaches is cold water on my head as I lean back in the sink to get my hair washed when I get a haircut. I could never take a cold shower, but cold water only on my head feels good. There are so many people here at this forum who have great ideas about coping with pain. Just collect all the ideas and see which one(s) work well for you.
You also mentioned having tremors. I don't know any relief for those. But if you find one, please share it with me because I suffer from those in my hands and legs. I hope some of this is helpful for you.
If it is your scar itching, mine did that for several months after surgery. I asked the doctor and he said that was a good sign means it is healing. For the soreness is a different story. Like Selma said ask your doctor. Sleeping to me sometime, cause I had to find the spot that was "mine". Went from seeping on back or left side to the right side with my arm up. Now comes the fun one. Being tired, even with B12. I take them also. There are days I can't keep my eyes open. Then are fun when at work, they tease me about being asleep. Then you have the days you feel like you have tons of energy. There is a lot of things you have to learn to do a different way but you can do them. Remember every person is different and does things different. So what may be good for me may not work for you. Remember we are here for each other. Have a Merry Christmas.
Hi Selma
No i don't know what type of Dura patch was used, However i will definitely ask when I see the neurosurgeons. Thanks, Im hoping there is no leak, I will be scheduled for another MRI in January also. it just hurts a lot and my skull is soar. I had to cut my hair because it felt as if i had a ton on my head.
Hi and welcome to the Chiari forum.
It is possible to develop a CSF leak,or a related condition may be flaring.
Did they rule out all related conditions? Do you know what type on dura patch was used?
Hi and welcome to the Chiari forum.
It is possible to develop a CSF leak,or a related condition may be flaring.
Did they rule out all related conditions? Do you know what type on dura patch was used?