I thought I wrote in my e-mail that I have tried every narcotic out there as well as a variety of other things to no avail. When I first found out that I had Syringomyelia... my neurosurgeon wanted me to try Amitriptyline (Elavil) which is actually an antidepressant but is supposed to work on pain and spasms. I tried it but it did not do much of anything as far as the pain and the spasms.
The usual dose is for night time and the one thing that it helps with is SLEEP. I know that several people on the list also take it and even though it did not help my pain and spasms when I was first prescribed it... it most certainly helped me sleep! Big time. So I am still taking it to this very day because I have found that the pain that I have to this day gets worse if I do not take it. The usual *dosage* is 50 mg at that time. Around 1997 I cut back to 25 mg and did not notice a difference. I was sleeping very well. But not too awful long after that I began feeling very, very bad again so went back up to 50 mg and that is what I still take today. The biggest side effect is weight gain... even for able-bodied folks. I have had that side effect but I have also lost weight while I was on it all these years as well. I do not know if you should bring it up with your doctor or not (or perhaps you're even one of the people who are on it!) because doctors are pretty quick to prescribe anything. But it also can't hurt to try it if you are desperate. Keep us up to date! Lori Michaelson C4/5 complete quad, 28 years post Tucson, AZ On Jan 6, 2008 7:02 AM, Silas Shelburne <[EMAIL PROTECTED]> wrote: > Lori, > > Reading your post sounds just like what I'm experiencing, I have a syrinx > that may be causing the pain. I have a appointment with a nuro surgeon in > February, but dam I don't know if I can stand the pain till then. It was > after 3 before I finally went to sleep, what do you take that helps? Thanks > Silas > > > > *From:* Lori Michaelson [mailto:[EMAIL PROTECTED] > *Sent:* Saturday, January 05, 2008 6:31 PM > *To:* Silas Shelburne; quad-list@eskimo.com > *Subject:* Re: [QUAD-L] Neck! > > Like Billy ... I have something very similar to what you describe. It > began in 1997 at the lower part of my neck. Pain but no numbness. The > muscles in my neck have always been very strong since my injury in 1979/1980 > because I have to use them to help hold me up, etc.. > > My neck was fused from C2-C7 ... I guess the surgeon at the time really, > really, really wanted to make sure that my neck was stable! It sure is > -- but NOW at an expense. My husband teases me that my neck bone is > connected to my butt bone! LOL > > All kidding aside because this affects me every day now. My neck fusion > is what does not allow me to turn my head to the left or the right very far > at all. This was never a problem for the first 17 years after my injury. I > would have thought after all of those years of depending upon those muscles > (neck, lower neck, spine and shoulders) that I would have some sort of pain > or problems LONG before 1997 but nope. > > I was then diagnosed in September of 1994 with Syringomyelia and had > surgery. However, I had none of the pains anywhere until two years after > the surgery! But the pain is pretty much where my spine is and where the > shunt is located... my lung cavity. Which is also where the trapezius > muscle is that is aggravated if I overuse it. So it is like it is all tied > in together at my expense. > > The ONLY thing that had changed in my life was that my EX wanted to split > up and I ended up moving into an assisted living facility. I was no longer > transferring or moving the way I had been for many years. ALTHOUGH... > absolutely nothing was hurting me when I was transferring or getting moved. > So, by process of a limitation, and since it started right then... I must > assume that my body was getting moved in a way that my upper neck and spine > and all the areas mentioned above DISLIKED whatever was happening different > and even now I am very careful now until this day... there is no going > back. Things have only worsened. Although Syringomyelia is a condition > that either stays stable or gets worse. > > Like you... turning my head left or right makes everything much, much > worse! My MRIs show that everything is OK. And the last comment that I got > from a doctor seems to sum it up the best. He said that the shunt is > probably woven through muscles and nerves and is now causing pain. I will > not be going to have my spine manipulated again by any surgeon. Every time > I have done that... I have come close to death. > > I have tried just about every narcotic out there as well as relaxation, > tens units, and so much more without relief. Massaging or even touching > area harder than a light touch ... exacerbates everything for the worse. > > I have had to just learn to deal with it and some days are much better > than others. But the last three weeks have been terrible. Whenever I exert > myself I think it causes my spinal fluid to be aggravated by pressure. I am > not even able to blow my nose because that hurts everything for weeks > afterward. > > Foolishly... I was imitating my husband snoring in the middle of the night > about three weeks ago and that is when it began. That sounds funny I know > but I have been in so much pain SINCE... that it is not funny and will teach > me to NOT try to do something that I know I should not! Or that will bite > me in the end. > > I just get so damned mad at my body for being so hypersensitive! It's > beyond the ridiculous end of the spectrum. > > > > Lori Michaelson > > C4/5 complete quad, 28 years post > > Tucson, AZ > > On Jan 4, 2008 1:36 AM, Silas Shelburne <[EMAIL PROTECTED]> wrote: > > Hi everybody, > > I'm having terrible neck shoulder and arm pain and numbness, the mussels > in my neck are so stiff and sore I can't hardly turn my head. It's worse in > bed when I turn my head, it's like the neck muscles are knotted up and > won't turn loose. Anybody else had this problem and what did you do. > Thanks Silas >
