Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Withdrawals???

Hi all,

I have a question for you about going off NSAID's. I attempted to go without my Clinoril last Friday ... I did okay all day... was rather stiff and sore, so I took walks pretty much all day! I knew nighttime was going to be bad, but I had something really scary and weird happen. I fell asleep alright, but woke up at about 3:00 needing to use the restroom.

I very slowly and carefully got myself out of bed and crept my way to the bathroom (you know that horrible gel-like, turn-inside-out feeling that your inflamed knees have in the middle of the night). Once there, I became terribly nauseated and thought I was going to throw up. Then I developed tunnel vision and loud ringing in my ears. I was so afraid I was going to pass out. I sat on the toilet resting my back against the tank and my arm on the counter and did lots of deep breathing. I was literally dripping with sweat, too. It was awful! It didn't last all that long really, but seemed like forever at the time.

Has anyone else had an experience similar to this? Do you think it could have been my system responding to the lack of NSAID? I've been nauseous from pain before. I was in pain, but I know I've experienced much worse pain in the past...? It was just so strange. Any ideas??

Sharon

P.S. Because I am so afraid of experiencing that again, I went right back on the Clinoril the following morning.

Dear Sharon,

I don't know the answer cause I don't have any problem when I took off my NSAID's slowly after NSD.

Perhaps you can do it slowly, not all at once.

But it could be nothing related at all, perhaps you can have other idea from others.

In my opinion, you can't always depend on your NSAID's so like it or not you have to learn to let NSAID's go out for good from your tummy.

Take care,
Sinta

Thanks Sinta,

I was thinking this morning that maybe I can just take them at night for awhile and see how that goes. It's just so hard to let them go when I'm still so uncomfortable and don't have the motivation of tummy trouble (thankfully!) -- I don't want to experience all that pain again.

Sharon

hi Sharon, I have had a similar experience twice,both times related to SI pain.I have never taken nsaids.Both occaisons followed extreme pain on awaking to go to the toilet during the night.I almost fainted and felt very nauseous and came out in a cold sweat. Whether it has something to do with just being aroused from slumber and, BANG, full steam ahead, in your face, raging pain or not, I do not know, but it seemed very like shock or trauma symptoms. I overcame the fainting feeling by sitting on toilet with my head down between my knees.Since going nsd and then dairy free and continually refining my diet in line with what I have learned here on Kickas I have become progressively pain and stiffness free, still some in the morning which disappears in about an hour.Recently this last week I have been taking LOTS of garlic both raw on my salads and last thing at night. I take 3 garlic capsules, I think this is helping too.I have been nsd since sept 2001 and it is really only in the last fortnight that I have begun to feel normal,that is, if I can remember what normal was.I hope this helps and hope you soon feel better, Jonathan.

Nightsweats are not uncommon with AS. I have experienced maybe 10 or so over the last few years that usually result in me having to get out f bed because my sheets and I are dripping wet with sweat. I believe it to be the body's normal way of dealing with an infection (like perhaps kleb.) and often happens if you get a really bad flu.

Maybe your body woke you up just prior to the "seating" happening that I would usually sleep thru but your body still had to continue with the sweating process even though you were on your feet. The NSAIDS may have been stopping this process from naturally occuring.

Anyone else had nightsweats??

Don't think you can - KNOW YOU CAN

Hi Sharon......
Glad to hear that you are okay and the episode wasnt too long.....
Darn! For a moment I thought this post was about food withdrawal! I have been staring at McCall magazine recipes rich with starch.........fantasizing not about other men......BUT greasy fries....and hamburgers. It's demented I know. I usually shake myself...if you can imagine THAT....and I get back in order......

YES.....I have had what you experienced before. It was my understanding from my doc is that my pain level escalated to the point of shock. When I had back surgery....my AS flared outta control. I was okay at the hospital and had a couple of sweat attacks.....but that day I came home......Valentines day mind you.......I had Art run to the grocery store....and bam.....outta nowhere......I just started sweating at the puter'.......dizzy, nauseated. My hands went all wierd on me and I staggered to call 911! By the time they got here about 10min later......I was still dizzy but recovering. My blood pressure had shot up. They said I was hyperventilating from the elevation of pain. They said my pain level was so high and I had boycotted my meds to try to wean myself off.....but apparently too quickly!!

Like the others......I started taking my meds at night only.....so I do get some relief wthout going cold turkey. I found that painkillers gave me more sweats than my muscle relaxants. But I guess it just depends on what works for your body. You know your body best.

Take care.........
Starchless buggy

Toodles!
Angie

Hi Sharon,

I was not familiar with Clinoril, so I did a little reading. Clinoril side affects sound exactly like the symptoms you were experiencing. http://www.gettingwell.com/drug_info/rxdrugprofiles/drugs/CLI1087.shtml
Maybe the problem is not too little, but too much. Sounds like you may still have alot of imflamation though. You may need something else. I had to taper off the NSAIDs (Naprelan) during the three months that it took for the AS diet to take affect. There were still some tough days and nights.

When AS had me down, I would also have night sweats. Sheet soaking and scary.
The night time could really suck. Laying down would make me aware of every breath expanding my ribcage and moving my sternum.

This may be a uncertain time for you as you take on the disease directly. It was for me. Keep studying. Knowledge is power and understanding can bring peace.

With wishes for speedy remission,
ike

Edited by ike on 06/04/02 03:16 AM (server time).

The dreaded night sweats ! I use to have them about once a week or so but since starting the NSD 3 months ago I have not had them again . The week prior to starting the NSD I had night sweats twice and boy was I worthless feeling . I hope to never have them again . Talk Later.

Bruce

Hi Jonathan,

Thanks for your input... your experience sounds very much like mine! It was awful, I sure don't want to repeat it! I was sitting there "yelling" (if you could call my pitiful cries "yelling" at that point) for my husband, but he just kept snoring away! He felt so bad in the morning!!

I did take the Clinoril only at night yesterday and seem to be doing quite well with that. I had to go in for a job interview this morning, so almost caved and took my morning dose, but instead took one tablet with me just in case. I'm glad I didn't take it. I actually feel pretty good. I'm fairly stiff after sitting still for awhile, but it walks off pretty quickly.

I'm still pressing forward with the NSD... I think I break it just about every day with something or another, but one day I will get there! I've been consuming dairy products every once in a while and I don't seem to notice any additional pain afterward, but I've never been totally pain free yet. I took my first dose of MTX Sunday evening, so I'm trying to really hit the NSD in the meantime. I want to see some obvious postive effects of NSD before the MTX kicks in. Both for my own benefit and to try to "sell" the idea to my new rheumy.

I'm so glad to hear that you are beginning to feel "normal" again!!!

Thanks again for your response,

Sharon

Hi Ozlion,

I never thought of the infection theory??? Hmmm. That's an interesting thought, isn't it? I have heard it said that nightsweats are a normal result of inflammation (my last, incompetent rheumy explained them away that way). I have experienced the nightsweats while on the Clinoril, so it doesn't seem to stop that from happening. I just didn't experience the nausea and near black out those times. The nausea and almost blacking out were the new and scary parts.

Thanks,

Sharon