... 7yrs and still deal with pain.If so what are docs saying and what do you do for help please answer thanks
I very sorry to hear about your condition, as I'm sure you are now aware it is not common. 7 years is a long time to suffer. You really need a "special specialist "! Where do you live? In your situation I would certainly do as much research as possible and if possible visit one of the top spinal hospitals or centers and try for some kind of treatment. There are not a lot of options but options are out there. With a documented history of 7 years with the condition I hope you are able to do so and improve your quality of life.
I know exactly what you are dealing with. Most people do not start getting the symptoms until about forty... I however got them when I was about eight years old. The pain got so severe that, in my sophomore year of highschool, I had to be homebound!
I went to a neurologist, and they FINALLY diagnosed what was wrong with me: Cervical Dystonia! They tried a handful of different drugs, but honestly none of them helped with the migraines it caused me. They ended up giving me botox injections straight into my neck, and believe it or not, it helped! They also sent me to physical therapy... and that is literally the best thing you can do! It strengthens the muscles in your shoulders and neck, and you will see a vast improvement the longer you stick with it.
I won't lie, Physical Therapy will make you so sore you can hardly stand if for the first few weeks... it gave me bad migraines! BUT, after my muscles started getting stronger, I immediately began to notice a difference.
I know what you're going through, it seriously sucks. I still have migraines, some so bad that i have to go get shots of Torodol(spelling?) to get rid of them. It's hard to accept that you have to live with pain the rest of your life, but it eases up at times!
Good luck with finding a treatment plan... i highly recommend PT and Botox injectoins!!
I'll jump on the bandwagon and suggest you find the best neurologist available. At its onset, the CD was so painful and my neck spasms so pronounced I practically had to drill my head into the headboard to get the spasms under control so I could sleep. After several days of getting almost no real sleep I thought I was going crazy and cried more than I ever had in my life. About 2 weeks in, I went to a physical therapist. He got angry with himself that he could not help with the pain or the spasms. Luckily, he directed me down the hallway to the physician on staff. He took one look at me and referred me to an excellent neurologist. It took him about 10 seconds to diagnose me. I started Botox, Klonopin and Artane. That regimen worked pretty well for a couple of months. I could hold my head up (with a few little tricks) and sleep. The pain returned. I began to top off my meds with alcohol. That worked for a short while. I went on like this for over a year.
I self-referred to an addiction specialist and discovered that (be careful here; this is just me I am talking about) I had become addicted to benzodiazapenes which apparently turned on me and began to create their own pain receptors. Obviously, the alcohol was doing nothing but magnifying the whole mess. Under medical supervision, I was titrated off of benzos. My meds were changed to eliminate the benzos, increase the Artane, keep the Botox, introduce herbal anti-inflammatories (Boswellia) and, of course, no alcohol under any circumstances. My pain was gone in less than two weeks. I do balance, stretching and deep breathing/meditation exercises daily (about 15 minutes twice a day) and go to physical therapy at least once a week. I still have spasms but not nearly as bad as they were. Of course, I wish it were "cured" but I understand it is rare to even experience remission. I had convinced myself I could not do many of the physical activities I took for granted. For the most part, I can do many of them as long as I am careful. There is hope. I can live my life without constantly thinking about this disorder. I never expect it to be perfect and can now laugh much more about it. Believe it or not, I think that helps, too. Hang in there.
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