Hello Strangers

Well I'll open by saying I hope that none of you remember me, and that anyone that might will be long gone and living the happy life of remission, if that isn't the case, hello, and I hope you;ll forgive my prolonged absence.

I've not been on the site for a long time, ( or any other patient help sites, it hasn't been a boycot or anything!) there are a lot of reasons for that,a run of family crisis, a horrendous depression and then finally a remission- after 6 years of daily pain.

There were a lot of things that kept me away, but I got to a position where to make any progress I needed to shift my focus, and I felt that all the time I spent focused on the pain was detrimental to my mental health, a mental state which had got to a very dangerous and procarious level. I am certain that the tegretol played an enormous part in that, but that ,my friends is another story for another blog, and one that I will maybe get round to telling you about soon.

I have however been off all medication for about 9 months, I got a remission and although I would have occasional twinges there were no full blown attacks, and only twice that I had to take some tegretol- and that was only because I was at work- but for the first time in a long time, I felt like I was able to live my life again, and I was getting on with doing exactly that.

In the last week that has changed dramatically. It started with a few big zaps ,following a cold which had left me with a sore throat ,the cold was nothing extreme but the zaps were getting stronger and a lot more frequent although not regular enough to stop me in my tracks or to warrant any meds. The cold went, but the zaps continued, yesterday morning I felt my left tonsil swollen, it was uncomfortable but nothing too unpleasant. No zaps in the morning, but the afternoon brought round attacks that had me screaming for the rest of the day.

Extra strength strepsily things, anti inflams and hot drinks eased it a little, my reasoning being that the swollen tonsil was putting pressure on the nerve causing it to flare so anti inflams were the way to go. 5 am this morning the pain woke me and continued solidly for an hour.

I took an anti inflam and fast acting tegretol combo and after lots of yelps, screams and tears I got some sleep, I've kept topping up the tablets since.

It was only at the weekend that my hubby and I had been talking about how good my pain had been and what a blessing it was to be free of it- and the tegretol- nothing like speaking too soon.

I am desperatley hoping that that the swollen tonsil will be on its way and when it goes it will take the pain with it, but I was never under any illusion that the remission would be permanent.

So I am here again back in the ranks, an old hand at the pain, but back to feeling like an overwhelmed newbie.

Grace:

I'd like to extend a huge (Catch-22) welcome back to you. Nothing is more upsetting than to hear of the returning of symptoms :( As soon as I read your blog this morning I added you to my morning prayer regimen. As I burned my sage and acknowledged the four directions and settled into meditation, your name was the first to go up into good thought and action :)

The one thing that stuck out to me in your blog was the sentence "I got to the position where to make my progress I needed to shift my focus, and I felt that all the time I spent focused on the pain was detrimental to my mental health." And you're right, that is a complete, different topic in and of itself. Anticonvulsants used to treat chronic pain syndromes is like quicksand of the brain unfortunately. When mentally stable individuals ingest potent medicines like tegretol, depakote or topamax it can do wacky things to thought processes and feelings. Another Catch-22. The drugs treat the symptoms but otherwise seem to make life unbearable emotionally! I'm one of those people because I have Eagles Syndrome, which heavily affects the 9th CN. Before my diagnosis in June of '13 I was put on Topamax for my searing migraines and facial/neck pain. Needless to say I had some personality changes and it seemed that all I could do was 'focus on the pain' and all of the symptoms that surrounded the pain. My life had become a whirlwind of, "Oh my God, what is wrong with me? How am I ever going to get out of this? Why is this happening?" Then finally the answers came with the diagnosis of Eagles and the removal of the left syloid in August of '13.

Then I found Ben's Friends in July :))))) And somehow I knew a choice had been presented to me. What I mean by this is - This is a part of my story. A part that I'm not too proud of, but a part that needs to be put out there. So others can maybe find hope. Because hope is what, I believe, keeps us who deal with rare, chronic pain on the up and up!

My journey with pain began in 1993, ironically when I sobered up and got clean. I developed a headache that would not go away. I sought medical treatment, test after test, physical therapy, medicine after medicine. To no avail, the source of this headache- neck/back/shoulder pain, ringing in the ears, face pain, teeth pain etc...Could not be found. Defeated in 2001 I chose to relapse and begin drinking and using to numb the physical pain. "Who needs doctors when I can kill the pain myself, right?"

In 2012 I realized I was going to die in active addiction if I didn't change my course. That I would never find the source of my physical pain if I was self-medicating. So I cleaned up again and began my plight to find the cause. I find it fitting that the first time I was clean in the 90's I had a daughter and I named her Faith <3 When she graduated in May of '13 (before I had my Eagles diagnosis) I told the god of my understanding (and this is the part of which I'm not very proud) I said, "Okay look Great Spirit, I know you wouldn't bring me this far to just drop me on my head. But I hurt. I hurt now more than I ever have because I'm not high anymore. I can't take this very much longer. I've felt this way for over 20 years. How much longer can I do this? If I feel this way when Faith graduates from college, I may have to consider taking matters into my own hands because she'll have the means to definitely take care of herself." Grace, how could I even think about leaving my only child? How could anyone understand this but the people on this site? My God saw fit to lead me to a doctor that provided me with an answer and get me into the solution pretty damn quick. I would never go so far as to do anything so rash, but sometimes I 'feel as if I could' because sometimes I don't want to exist in this physical body anymore. But the bad days pass just as quickly as the good days STAY!!!!!

I don't share things like that on this site because it's such a downer. I come on this site and swoop in and out with encouragement and hope. That's what I mean about having a choice. Since my 1st Eagles surgery I have been diagnosed with Superior/Semicircular Canal Dehiscence (a rare inner ear disorder). I emailed Scott Orn about maybe starting up a section for SSCD but they didn't have the funds for the software. He asked if I'd be willing to volunteer to moderate for Eagles because I have active, positive participation.

So I find that while I must acknowledge my pain, I do not have to let it consume me. I have found a way to, it may sound off the wall, but, I have found a way to embrace my pain, hug and love my pain. I have learned that acceptance of my pain doesn't mean that I like my pain. Because I've learned in 12 step meetings that I don't have to like something in order to accept it. I can hate it, but as long as I accept it I'm headed in the right direction. My pain doesn't need my stamp of approval in order for acceptance. If I'm angry about it, it only makes it worse and flare up even more. If I embrace all of my pain and accept that it's part of me and not fight it, it's so much easier for me to function.

You are strong. Stronger that you probably give yourself credit for Grace. I am here for you and we are all here to support you. Through the bad and through the good :)

Kindest regards,

Amy

Grace, I am so sorry to hear that your pain has come back. I am thankful you had a remission for a time, at least. The welcome mat is always out for you here, when you need it. I hope you get some relief soon!

Ladies, thank you both for the welcome back. Amy, I'm glad to hear you're modding- that's exactly what these boards need, positive practical folks who are happy to reach out, I had reached a point that I wasn't able to do that, and part of my reason from retreating from the boards was because I was in such a negative place myself, I felt I was unable to make a positive contribution, I've not checked in there for a long time, but I know the eagles board too, and I'm glad to hear that there are folks benefiting from it :)

A lot has changed, and thankfully I am in a far more positive place now, albeit a damned sore one today, and having the board to return to and vent has helped no end, and whether it;s been the antiinflamatories easing the swollen tonsil, or whether it has been your sage and prayers, or a combination of the two, I have had a far better afternoon and I am exceptionally grateful for the fact.

Last night was pretty grim in the pain stakes, and I can honestly say that this morning was about as bad as I have ever felt the pain, having been off all medication does mean that I have no baseline cover for breakthrough, so when a bad attack comes, well; you all know what that's like.

I will not go back onto the tegretol though,the fast release was necessary today, and as a one off that's fine, but the slow release? Not a chance. The changes that it made to me, and to the essence of who I am were totally intolerable, and hindsight wont allow me to consider taking it again, I lost so much in taking it that i wont o it again- but my thoughts on AED's and their effects on mental health are whole different blog, and one that deserves a topic all of its own

Anyway, I'm going to go and try and eat something, but thanks again for the warm welcome back folks, I fear you'll be seeing a lot more of me!

Much love

Gracie x

Glad you're here :)