Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Help Please?

Blester,

In me it's the auricular nerves, they are underneath the ear and they feed off the nerve junction box c3-c4......usually celebrex helps, at the moment they are so acute and the direction finding stuff that's well weird.....

But it's like explosions......

I sneezed last week, fely like my shoulder blew off.....

Dave

Poor David. I'm sorry you are going through all this. Is this all because of the fusing going on in that area of your neck? It is such a scary disease in that the spine runs everything in the body...

David,

I'm not up to date with your meds. Have they tried a 40mg Prednisone dose pack? Or Prednisone at all? If not ask them. I would also ask for some Xanax to calm things down. The pain will cause every muscle in your body to tighten up making EVERYTHING worse than it has to be. What I found worked for me when I was in a similar state were these things:

Higher doses of Prednisone, usually a dose pack starting with 40mg to knock down the flare- reduces inflamation-pain- hence reducing muscle spasm, reducing anxiety, reducing depression.

.5mg Xanax every four hours for a couple of days then ween off, hence reducing muscle spasm, reducing anxiety.

Alternative to Xanax (don't do at same time, one or the other), though a different animal, would be Zanaflex (muscle relaxant that works on muscles of the spine.

Very light neck traction to help with the nerve compression. "Light" neck/shoulder massage from somebody every few hours. Heat at this time usually aggravates things by bringing more inflamation. Don't do heat or cold.

Then the grand poobaa if none of those helped, would be an injection of 50mg Demerol with 25mg Visterol every six hours for a couple days then ween off in two days. Demerol is a pain killer and the Visterol is a anti-nausea anti histamine that keeps you from getting nauseous from the Demerol and helps you sleep even better. Morphine kinda wired me out. I could never fully sleep while on it. Demerol/Visterol knocked me out.

Goal here is to get out of the pain cycle as soon as possible. Sounds like you are in a major flare in your neck. I know exactly what you are going through. I had all the head/face/eye/ear pain and nausea from all the pain. I'd brown out if I bent over.

Just another thought, have you had a complete blood count done to make sure nothing else may be happening. Liver functions etc?

Just some thoughts David. I hope something here will help you out.

Kerry,

thanks meds are ok preddy tapering down from 25mg oral and 2 enenam's which is quite alot the enams are not totally absorbed but worth maybe 15-20mg......systemically. The neck burn and active proctitis seem to be linked.......The attacks are happening onMondays I take the MTX Thursday so I'm wandering if it's the immune system bouncing back and maybe a split x2 a week MTX dose will help.

Morphine knocked me out as I was exhausted been at it for several days, but it did n;t stop what was happening through the nervous system, that's when the BP peaked and they woke me to get me to move........and it's that pain stress which is the issue.

I'm a bit shocked, by the hospital expereince, but not depressed (neurotonon and tramadol stops anything like that LOL he claims), but "the pain anxiety" during the attack yes, it needs alot of calm but there is only so much your system can take.

They gave me something last year which dealt with the nervous system reaction, going to have to find out what is was. Another Job tomorrow,

I'll discuss this tomorrow wih rheummy, I want an attack treatment protocol.........I'm not having a heart attack if it's avoidable.

Has the occiptials eased off on the remicade?

David

Dave, I wish I had some perfect answer for you, but I don't . I just want to let you know how much I'm praying for you, and hoping that you're feeling better soon.

Chelle

Remicade has taken away for the most part, the hardness of the disease. I move easier from the get go but can't overdue things. It just makes coping easier. My neck has settled down quite a bit by way of fusing. But the damage is done. Now my skull is the only thing that turns. It is rubbing against C1 and sometimes my head just sticks and I have to literally unfreeze it with my hands. I suppose soon enough I will be moving like the Tin Man after a rain. Because of the calcification that is all encompasing my neck, any arm movements that pull on my neck muscles in excess cause my headaches/eye pain. Stirs up the inflamation I guess.

All I can say is find the right meds to corner your pain. Use drugs as a tool. I get off them as soon as I can. Tramadol depresses the hell out of me right after I stop it. But knowing this I use only as needed. Nuerontin just dulls me out so nothing matters. I never use it anymore. I havn't needed the Demerol cocktail in almost a year now.

Keep us posted.

They do n;t know why, the arthritis itself has settled peripherals are all healing the bone spurs are now receeding in ankles wrists and knees.......

The options they are pursing are an infection (culturing) root nerve irritation C3/C4/C5 or IBD flare.

The words from the senior rheummy was that the symptons are all compression signs, but whilst I have abad disc in c5-c6 that's not chamnged and they felt it was more severe nerve and root irritation probably going into the cord.

I'm lucky on the arthrtis side and my IBD is not pancolits but he said unlucky in how the nervous system gets irritated.

David

Thanks for sharing Kerry, you post very articulately and honestly which helps heaps.

I do n;t use tramadol as much as I would like but it has heaps of advantages over SSRI's and amytripiline, but most of the time I'm without. I try to get off them asap and you can do that on it unlike some of the others. Increased pain seems the only side effect coming off.

I've managed most days even when it;s excrutiating, it makes me move but night times well it's impossible to have a normal life. I've treid very hard with my GP, she;s away at the moment and I see the alternative Dr and she's marvellous......would n;t suprise me if it;s not in her family, as she knows too much.

Everytime I get up at night my heart is racing, chest is tight sometimes like a car air bag going off.....I goto the bathroom and my neck feels like it's ready to explode......just like it did in the hosptial when the BP was up very high. this seems to be around the 2 hour mark......

There is also a lot of cracking on the neck joints, and you can feel that pulling on the nerves, not much on the MRI to suggest fusion, and as yet my eyes are not working well enough to read them.......good excuse for not doing my admin I suppose.

Family are being good, my partner was cross with me as I'm getting confused forgetting where I am what I am doing......dropping things but her friends are over and spoken to her and she's changed abit, they've told me to call them if she gets aggro, her last boyfriend passed away and she's very concerned. She's noticed alot but has left it up to me.

I'm not too scared about this being permanent, it's just a set back and I've known for a few years it's the one that catches me as I get out of the bad flares and try to be more active......

As for depressed, I'm not generally depressed, got a few worries but handling them,

I look on the bright side my legs and feet feel so good from the MTX, and I'm grateful to be out of the arhtritis pain.......which has been a major goal. The attack pain is pretty major, and that's the bit that gets me I can deal with it for so long. Now it;s just devising a protocol for the attacks.

When I look back at the last 3 -5 years, I'm actually going pretty good.

David











As for neurotonin, it helps alot guess like having a couple of beers,

Hiya,

it's sunday evening and today seen quite an improvement......not staggering as much which is a real pleasure to be over.

Got an early morning so trying to get to sleep, but you know wht it's like?

David

Davo,
So sorry you are hurting I will keep you in my payers.
I ask God to embrace you, Yoly