Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 08-29-2011, 11:54 AM #11
SandyRI SandyRI is offline
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I am so, so sorry.

500 mg. in a first infusion seems like a LOT. I think I would be HORRIBLY sick for a few weeks also...my last infusions were for only 200 mg. each, 2 days in a row. Even then, I didn't feel all that well for a week afterwards, I couldn't get rid of my headache. But now, 2 weeks later, I feel great. However, I have had 47 infusions. My first infusion was only 70 mg.

Have you talked to your doc about how badly the infusion made you feel? Did he provide you with any medications in case you had problems with an upset stomach? I have generic Zofran which helps a lot with nausea. I have a really hard time with ketamine and my stomach also, my nurse always pushes Zofran at the beginning of my infusions.

I wrap my hand and wrist in a moist cloth with a heating pad over it several times a day when they ache from IV's. The wet heat helps relieve the pain from the catheter quite a bit.

Please take care and keep in touch. XOXOX Sandy



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Originally Posted by lovefamilypets View Post
Hi everyone,

I wanted to write back sooner about my outpatient ketamine experience 2 weeks ago, but I was too sick until now to feel up to it.
My first day I had a 500mg infusion over 4 hours. I went in at 6am and was suppose to be discharged at noon. I wasn't discharged until 7pm when my dad wheeled me out and lifted me into the car while putting a throwup bag on my lap.

During the infusion, I had scary hallucinations which consisted of dying a slow death. I vomitted throughout the infusion and recovery period. I had horrible vertigo, nausea, dry mouth. I was terribly weak. I could not walk on my own to the bathroom until 1am the next morning. The anesthiologist said he had never seen someone react as poorly as me and stopped the infusion short.

Two weeks later I'm still exhausted, my left hand flare up from the IV cath continues, my stomach is still bothering me, I'm scared to fall asleep and I just feel so down.
I feel like giving up and I'm not sure how much more I can take. This was one of my last treatment options. At 27, I feel like my life is over and there is no hope of getting it back. I just don't know what to do and I thought if anyone knew it would be everyone on here. Please tell me this will pass because I can't handle feeling like this for much longer.
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Old 08-29-2011, 11:55 AM #12
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Originally Posted by wswells View Post
I am so sorry to hear that you are going thru so much. I have no experience with ketamine but I just wanted to let you know I feel terrible for you. There are so many people on here that will advise you and let you know that you WILL be ok. I have had this since 1986 and am so afraid to try the ketamine because of the stories, but there seems to be alot of success with so many people, keep your chin up and someone will come along with a great story for you regarding feeling better. I hope you feel better real soon.
Your friend Wendy
Thanks Wendy for those kind words. You don't know how much it means to me just to know there are people like you who understand everything I go through. It was a horrible experience, but I felt like I had to do it at the time because I was so desperate for pain relief. I know you haven't done it, but if you do I really hope it helps. I know it has helped a lot of people. I guess it just wasn't the treatment for me.
I'm so sorry to hear you've been struggling with this since 1986. At the same time, you give me hope that I can keep going even if things don't get better. I'm trying to remind myself that a life with CRPS is better than no life at all.
Thanks again Wendy for being there.
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Old 08-29-2011, 12:03 PM #13
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Quote:
Originally Posted by SandyRI View Post
I am so, so sorry.

500 mg. in a first infusion seems like a LOT. I think I would be HORRIBLY sick for a few weeks also...my last infusions were for only 200 mg. each, 2 days in a row. Even then, I didn't feel all that well for a week afterwards, I couldn't get rid of my headache. But now, 2 weeks later, I feel great. However, I have had 47 infusions. My first infusion was only 70 mg.

Have you talked to your doc about how badly the infusion made you feel? Did he provide you with any medications in case you had problems with an upset stomach? I have generic Zofran which helps a lot with nausea. I have a really hard time with ketamine and my stomach also, my nurse always pushes Zofran at the beginning of my infusions.

I wrap my hand and wrist in a moist cloth with a heating pad over it several times a day when they ache from IV's. The wet heat helps relieve the pain from the catheter quite a bit.

Please take care and keep in touch. XOXOX Sandy
Thanks Sandy for the advice. I think I might try the wet towel and see if that helps.
It is really good to know that perhaps I am still feeling the affects of the K even 2 weeks later. I have been wondering if there was something really wrong with me or if this could be normal.
I think the doc screwed up big time. I told him I was very sensitive to meds and he said ok we will do 200mg for the first infusion. Then suddenly the morning of the treatment he decides to do 500mg without telling me until after I'm barely conscious. I was on Reglan at the time of the infusion, then zofran afterwards.
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Old 08-29-2011, 01:07 PM #14
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I need time after my infusions to feel better, I NEVER feel 100% right away. And with as much ketamine as you got, I think I would still be sick, too. Talk to your doc and see if he has anything he can recommend to make you feel better. I have heard of many who get scripts for anti-anxiety meds, etc for afterwards and that they help a lot. Do you still have some Zofran left for your stomach?

To me, your reaction sounds completely normal, and you have my deepest sympathy!! If your ketamine doc can't help you, perhaps your PCP can. Be persistent. It's awful that you have suffered like you have. Neither of my ketamine docs would ever adminster a ketamine dose that high, especially on an outpatient basis. Also - on Facebook check out the "Ketamine Klub." Lots of good info there...

Sandy


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Originally Posted by lovefamilypets View Post
Thanks Sandy for the advice. I think I might try the wet towel and see if that helps.
It is really good to know that perhaps I am still feeling the affects of the K even 2 weeks later. I have been wondering if there was something really wrong with me or if this could be normal.
I think the doc screwed up big time. I told him I was very sensitive to meds and he said ok we will do 200mg for the first infusion. Then suddenly the morning of the treatment he decides to do 500mg without telling me until after I'm barely conscious. I was on Reglan at the time of the infusion, then zofran afterwards.
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Old 08-30-2011, 03:38 PM #15
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wow. that is an incredible amount of ketamine for a first time outpatient. i would have thought you would have been maxxed out somewhere in the 300 range on the last day. my daughter starts around 200-250 depending on how she is feeling but almost never goes over 375. can you talk them into less ketamine and more versed. benedryl can help your stomach and make you sleep during it.

liz
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Old 09-28-2011, 01:29 AM #16
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Lovefamilypets,
Just want to f/u on your progress re: ketamine infusion. Did you have any pain relief? How's your IV site? May i ask who was your ketamine doc?
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Old 09-28-2011, 04:05 PM #17
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Quote:
Originally Posted by lovefamilypets View Post
Hi everyone,

I wanted to write back sooner about my outpatient ketamine experience 2 weeks ago, but I was too sick until now to feel up to it.
My first day I had a 500mg infusion over 4 hours. I went in at 6am and was suppose to be discharged at noon. I wasn't discharged until 7pm when my dad wheeled me out and lifted me into the car while putting a throwup bag on my lap.

During the infusion, I had scary hallucinations which consisted of dying a slow death. I vomitted throughout the infusion and recovery period. I had horrible vertigo, nausea, dry mouth. I was terribly weak. I could not walk on my own to the bathroom until 1am the next morning. The anesthiologist said he had never seen someone react as poorly as me and stopped the infusion short.

Two weeks later I'm still exhausted, my left hand flare up from the IV cath continues, my stomach is still bothering me, I'm scared to fall asleep and I just feel so down.
I feel like giving up and I'm not sure how much more I can take. This was one of my last treatment options. At 27, I feel like my life is over and there is no hope of getting it back. I just don't know what to do and I thought if anyone knew it would be everyone on here. Please tell me this will pass because I can't handle feeling like this for much longer.
I'm so sorry that you're experience was so horrible and that you're hurting so badly. I actually found you on another thread about looking for a support group in S. CA and then I looked at some of your other posts. I live in Irvine too and am also 27 and I was just diagnosed with CRPS in the last few months. I was wondering if you wanted to email, or call or something, because this whole thing is just insane and it would be wonderful to talk to someone my own age who understands. Hope to hear from you soon.

Danielle
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Old 09-28-2011, 05:12 PM #18
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Quote:
Originally Posted by DDayton View Post
I'm so sorry that you're experience was so horrible and that you're hurting so badly. I actually found you on another thread about looking for a support group in S. CA and then I looked at some of your other posts. I live in Irvine too and am also 27 and I was just diagnosed with CRPS in the last few months. I was wondering if you wanted to email, or call or something, because this whole thing is just insane and it would be wonderful to talk to someone my own age who understands. Hope to hear from you soon.

Danielle

Dear Love my pets....

My heart is sad for you...Reading your post, I can feel your extreme sadness...and desperation ...the last thing we need with CRPS is to feel so ill from the treatment, ESP. Having such positive thoughts in achieving some relief... RSD is bad enuf on it's own!! I have not had Ketamine, ins. Won't approve it but never the less... I want you to know you are not alone and not to feel sad, as we will fight this monster together, daily, one small step at a time and I will understand however you decide to go forward from here...just don't lose faith that is in your heart and please...never give up your fight...so sorry for your recent struggles...so sorry!!

Love, Kathy
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Old 09-28-2011, 10:08 PM #19
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Dear Lovefamilypets,
You just went though alot with your body. Just take it one step at a time and get over what just happened to you. Give yourself a few weeks before you start to think of your next step. There is always a next step you just need to get back to yourself so you can think about it logically. Right now everything is fresh in your mind.

I have had iv's of natural vitamins and minerals every two weeks for about 11 months now after a bad ICU experience while having ketamine done so I know how hopeless you feel now too. Hang in there. I was told by my doctor there is nothing I can do for you and I wanted to die it hurt so bad but then I found the iv vitamins and am now down to going once a month and for seven months now I am off all opiates which to me is a miracle so things will happen but you just need to be patient and find what works for you. Hang in there my friend.
kathy d
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Old 09-29-2011, 03:17 PM #20
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I don't know anything about ketamine but I can tell you if you get nausea's like me. you may want a scopolimine patch. (? spelling) It is real small goes behind your ear.
I where one with any surgery, because I get violently ill from anesthisia. Good luck! keep us posted.
anita
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GOD help me be faithful in the midst of my suffering. Alt1268
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