NeuroTalk Forums

DeesRSD · 11-05-2010, 10:25 AM

Quote:

Originally Posted by loretta

Hi Dee and Welcome, Thank you for sharing your history and information about your ketamine treatments. I live in Arizona too, the past 12 years-have had RSD 15 years-full body and internally.
There are support groups in Tucson and Phoenix. I am 62, married with one married daughter. This is a wonderful group, here on Neurotalk. Take care, one of your new friends, loretta

Good morning Loretta and thank you for the welcomes

Isn't AZ awesome! I do love the weather here, course coming from New Hampshire anything above 60* is a blessing lol.

Ive heard rumor that Phoenix/Tucson are doing infusions but Im not sure, have you tried them?

I have 2 grown children, daughter and a son, and they have blessed me with grandchildren ( although I dont see them as much as I would like ) thank goodness for the internet

Thank you again for the welcomes and I look forward to talking/discussing again soon,
Dee

DeesRSD · 11-05-2010, 10:33 AM

Quote:

Originally Posted by SandyRI

Hi Dee -

I doubt my docs would ever go to 1000 or 1200 mg. WOW. Do you have any side effects from such a large dose? I noticed that I was having horrible dreams after my dose was first increased from 150 to 200, but they seem to have subsided now.

I need to work FT, and the last infusion I received was in the middle of the week, so I had to return to work the next day - talk about exhausting!!

Thanks for the info. Take care, Sandy

Good morning Sandy,

Yeah, its a pretty high dose and its prolly right of the line of whats considered "acceptable" but it works. The only side effect ( if it can be called one) is sleepiness. I sleep like a rock during and after an infusion and I surely do love it. I like most have a wicked time sleeping, if I get more than 3 hours in a row Im like woot woot lol, naps are my friend

I couldn't imagine working the next day after one, you are a strong person bless your heart. Im always happy to share any info I can, hopefully its helpful to any/everyone

talk soon and take care, Dee

DeesRSD · 11-05-2010, 10:47 AM

Quote:

Originally Posted by gabbycakes

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

Hi Gabbycakes,
Sounds like the over 5 days is best tolerated by you, I'd stick with that plan for sure. My doc does mine this way because my body tolerates it, and it works for me, but we all are different even though we share the same monster. I think the ketamine pills afterwards helps alot as well. I do go in with a positive mind though, telling myself not only am I going to feel better, but I get that glorious sleep I so lack.

My son is in his 20s and he can make me laugh even on my worst days, he put this video on YouTube once and omg everytime Im feeling a bit shatty, I go there and watch him sing/dance and bout pee myself laughing, kids are great, epecially when they are older

Hang in there, and hope to talk again soon
Dee

SandyRI · 11-06-2010, 05:15 PM

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

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

gabbycakes · 11-06-2010, 05:33 PM

Quote:

Originally Posted by SandyRI

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.

Site Navigation

NeuroTalk Online Support Groups

Hi

NeuroTalk Forums