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 11-06-2010, 05:15 PM #1
SandyRI SandyRI is offline
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SandyRI SandyRI is offline
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Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
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Hey Gabby,

Sorry for all your issues - when it rains it pours!! Sounds like you have yours hands full!! Thankfully you have good kids and a supportive husband.

Your doc is one of the very best, how very fortunate for you that you can rely upon him and the staff of his facility to treat you. They really know thier stuff. What does Richman think will help you the most? I also think you may want to ask him to try to specifically address the nausea with stronger meds next time you are in for an infusion.

I've had a real tough time with the nausea during and after some of my ketamine treatments, but other times I am fine. I have a script for Zofran which helps. They also add stuff to the infusions while they are running. But the time I might have to spend with a bucket (we always bring one in the car on treatment days) is well worth the relief I get afterwards. The RSD in my head is really bad when it gets going, and I really HATE it when my head hurts a lot.

The very best of luck to you with everything. I really hope that things settle down for you soon!

XOXOX Sandy


Quote:
Originally Posted by gabbycakes View Post
Wow, I don't know how you guys do it. As SandyRI knows I have 3 - 5 day inpatient infusions w/boosters. Ketamine and I do not get along. It worked and stuck but while it's getting into my body I have experienced some side effects. I think I did better with the 5 day. I did mine, all 3, with Dr. Richman in NYC. He has a protocol of ketamine and a continous epidural of other meds. to counter act the effects. Yet it wasn't a party but almost easier. The booster took me 3 - 4-days to feel I could even drive. I sometimes think because I am Hypo-thyroid and have been since I was a child it has something to do with it. I have asked that question but they say no. I have a problem taking a contact cold tablet. When I say it effects my body it's really my head, I get dizzy really dizzy which leads to nausia, the rest I leave to your imagination. Yet I can take other meds. without a problem.

My husband say's I'm a control freak it's all in my head. If I don't think it's doing what it's suppose to I just shut down. He has a point in way, I can be really stubborn.

I have been discussing with my doctor to maybe do a 2 day booster but I just hate to do it. I'm scared of feeling that sick feeling, I just hate it. But I am really starting to suffer again and I do work PT and it has done wonders for my head I hate to quit and I won't. They are very understanding but I try never to use my RSD as a excuse it's really hard some days. So, SandyRI you are like our rock. Some days when I feel good I think maybe I can do this everyday but others I feel like death. We have also been dealing with my mother-in-law who has stage 4 lung cancer. She has been living with us for the last 3 months while she goes through her chemo which is done now. On top of everything else we discovered a hugh mold problem in her home a $15,000.00 problem. So my husband has been living in a hotel while the work gets done so she can go home. She is in some type of remission but will have to have us a nurse and a aid to get through this, I have my doubts. But will do what we have to she's a great woman. Sorry guys I'm feeling sorry for myself this morning. I miss my husband. I quess the stress is starting to get to me. Thank god for my kids especially my son,19, he's just like his Dad a big loud mush. I can really go to him and talk it out which I done a hundred times this week. He's funny he say's "Mom do you realize your coming to hang out with me and my friends like everynight", he's a college student and lives in our apartment downstairs. Now I'm wondering what that statement ment. But him and his friends are great young adults. OMG I'm rambling. Sorry...

Have a nice day all. You guys are so strong. I wish I had it in me.
Last statement, I do support and believe in Ketamine Treatment.

Gabbycakes
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Old 11-06-2010, 05:33 PM #2
gabbycakes gabbycakes is offline
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gabbycakes gabbycakes is offline
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Join Date: Oct 2008
Posts: 518
15 yr Member
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Quote:
Originally Posted by SandyRI View Post
Hey Gabby,

Sorry for all your issues - when it rains it pours!! Sounds like you have yours hands full!! Thankfully you have good kids and a supportive husband.

Your doc is one of the very best, how very fortunate for you that you can rely upon him and the staff of his facility to treat you. They really know thier stuff. What does Richman think will help you the most? I also think you may want to ask him to try to specifically address the nausea with stronger meds next time you are in for an infusion.

I've had a real tough time with the nausea during and after some of my ketamine treatments, but other times I am fine. I have a script for Zofran which helps. They also add stuff to the infusions while they are running. But the time I might have to spend with a bucket (we always bring one in the car on treatment days) is well worth the relief I get afterwards. The RSD in my head is really bad when it gets going, and I really HATE it when my head hurts a lot.

The very best of luck to you with everything. I really hope that things settle down for you soon!

XOXOX Sandy
Hey Sandy,

I would probably not do ketamine again, even thought I could use a booster. But I don't think it's for me anymore, just a personal choice. I still may have surgurical issues to deal with at some point, I might try some blocks in the mean time, SGB, and just continue to go the gym and move as much as I can. Like I have said in the past working out for me actually helps my pain, helps me sleep better and I just feel overall better. I don't know if it's the endorphines or what. But for you guys that are happy with the results I think it's great and hope you continue to get relieve.

Yes, we do have our hands full. The house is complete and she should be able to go home in a week or so. Final testing still has to be done and the results have to come back and then she can go home. We still have to arrange for a nurse once a week to drain he pleurs plug and since she only has 1 lung her insurance will pay for a nurses aid to come 3x's a week to help her bath, make sure she's eating and so on. Thank god for that we live an hour plus away from her, but we still will have to go down on the days other's are not so she's covered. Thank you so much for asking.
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