I do use tapes and I completely forgot about candles. The bedroom is surrounded by bright colors and plants. Today was our anniversary and we were supposed to go out for dinner. Of course, I woke up with edema, and a lot of pain. I might have maged the pain, but there was nausea and complete fatigue. Money cant buy health, but it helps pay Dr. bills and helps with other issues. It would be a great idea for us to list different things that help.
What can you do with a lack of circulation that forces you to bed. Thats more the neuropathy aspect.
I have not been able to find someone to test the other neuralgias. I believe you and many others have brought up cervival issues. Today felt like a migrane or occipital, glosso attack. I would like this tested in NY. Atypical pain with pinched nerves and neuralgias is a big package. Its not any worse than anyone elses.
We all need to try to obtain a diagnosis. Im trying to figure out what caused todays attack. I keep a journal. The massage was tuesday. I could feel pinched neck nerves Weds. There are 12 cranial nerves to start. Then theres neuropathy. Many members have multiple disorders. Just makes functioning so much harder and frustrating.
I am still reading. There must be food triggers as well.Now I am wondering if massage is a good idea.
For Red-PAD-peripheral arterial disease-likely cause-compression.
I can turn my neck fully. so whiplash and cervical problems are issue.
Thank you, for helping.
Hi Laura,
I was diagnosed when I was 31 too. Altho I had attacks when I was 21 and 26 just didnt realize it was this because it went away with Steroids. But now here I am 33, have had one MVD, and then 8 days later a surgery for a spinal fluid leak. Pain free for one year.....It was sooo nice to live normal again. then this past May it came back full force again. This time my surgeon decided on radiation. I guess I should tell you that no meds of any kind worked for me. And if they did work I was either allergic to them or they made me so sick I could not even walk or talk. The radiation last 3 months. I am back to where I was 2 years ago. Only this time my neurosurgeon really is not optimistic about any procedure out there. I take 3600 mg of neurontin a day so that makes me sleepy. I also have epilepsy. So when you say you feel hopeless, I do too right now. I feel completely worthless. I can not work, because of the pain so my husband has to work so hard to support all of us. I have two young boys. One is 10 and the other 8. Somedays I can not even take care of them.
I do alot of music therapy and alot of aromatherapy. Relaxing smells work the best. But right now I am down in the dumps and I cry almost every single day. I wish you all the best. I have to stop typing because I am getting teary eyed just thinking about all of this....oh I also have two dogs that I sit with alot during the day.
God Bless you
Billie
I have been feeling down as well. i must leave for new york to see surgeons and what they decide may or may not help. My ent has sent me to a skull base surgeon and my ocular has referred me to a plastic surgeon. Odd things have started to occur. My eyes are closing involuntarily, and I seem to be saying things that I do not clearly understand. I feel semi-conscious. I took a brain scan with contrast last week and I have a neck scan thursday. The tissue shortage is causing tremendous muscle pain and cramping. I cry alot to because i feel responsible. I feel so badly billie and i wish i could help. I wonder if i have epilepsy now. Every day its another horror
You are not worthless! You didnt create this monster. have you been to any university centers. dont give up. I recall how it took a woman 6 times to achieve success. They have not touched the right spot and perhaps they will. Bad things happen to good people.
I need my cats who are not dependent like dogs. The families suffer too.
I dread this trip. My life is in the balance. I understand your tears and I pray things improve.
I just cant imagine a life like this. I never thought this could happen. Just know that I am thinking of you and all the others. I hurt more when you hurt. I am here for you, but not capable of much either.
lots of hugs.
Billie Koele-Miller said:
Hi Laura,
I was diagnosed when I was 31 too. Altho I had attacks when I was 21 and 26 just didnt realize it was this because it went away with Steroids. But now here I am 33, have had one MVD, and then 8 days later a surgery for a spinal fluid leak. Pain free for one year.....It was sooo nice to live normal again. then this past May it came back full force again. This time my surgeon decided on radiation. I guess I should tell you that no meds of any kind worked for me. And if they did work I was either allergic to them or they made me so sick I could not even walk or talk. The radiation last 3 months. I am back to where I was 2 years ago. Only this time my neurosurgeon really is not optimistic about any procedure out there. I take 3600 mg of neurontin a day so that makes me sleepy. I also have epilepsy. So when you say you feel hopeless, I do too right now. I feel completely worthless. I can not work, because of the pain so my husband has to work so hard to support all of us. I have two young boys. One is 10 and the other 8. Somedays I can not even take care of them.
I do alot of music therapy and alot of aromatherapy. Relaxing smells work the best. But right now I am down in the dumps and I cry almost every single day. I wish you all the best. I have to stop typing because I am getting teary eyed just thinking about all of this....oh I also have two dogs that I sit with alot during the day.
God Bless you
Billie