[redraidermommy]

Hello all-- I haven't been very active due to a major flare up and some other health problems (heart and kidneys), but I wanted to let you all know I just finished my first round of ketamine. I was nervous going in, but it wasnt so bad. Getting the IV started was difficult as always (my veins roll), but the rest was smooth sailing.

My dr said to give it a few days to take full effect, but we did start at a low dose. I'm to report back in 2-4 weeks and let me dr know how I'm feeling. If there isn't enough relief, we'll keep going up. He does his different, he has you wait a few weeks before the second round. I felt like I was floating on clouds.. I was in and out of consciousness, and the time was up before I knew it. We did 3.5 hours today, and when I left I felt like I was walking on clouds. Strangest feeling. I did get hot and a little nauseated, but I made it through! I still feel a little dizzy and my heart rate dropped quiet a few times (I'm braychardic), but my nurse was there the entire time monitoring me. I'm excited for the next few days, and I pray I get some relief. I do feel some relief now, but not sure if I'm just imagining it.

I'm a state employee, and my UHC paid for it. I just paid my co pay. Last week I got a R/L occipital nerve block, so I pray and hope the combined relief will be good!!!!!!!

[mama mac]

Red,
Glad you made it through your first infusion with only a few minor issues. I had my fourth infusion on Monday. The first three were given together back in early October. I, like you, are hoping for a good outcome. It did take time to reach the maximum benefit after the first three. That's great your insurance paid for it. Too bad I'm no longer state employed. Good luck to you!
mama mac

[Littlepaw]

Hey Red,

Yeah! I am thrilled for you. The ketamine takes a while to kick in and accumulate. I read a study not too long ago of good outcomes even in patients with long-standing CRPS. There is a lot of upside potential.

Don't overdo in the next few days....I have a tendency to do this as I am feeling so comfortable right after and it isn't always the best idea.
I am hoping for the best possible outcome for you,

[catra121]

Hoping so much that this gets you the relief you need. I'm glad it went well for you. Please keep us updated on how you are doing.

[redraidermommy]

Thank you everyone. I'm not feeling so hot. I feel like the burning in my hand has gotten worse since Thursday. I don't feel a lot of difference, but my hand and arm are unusually more painful ;( I'm trying not to get discouraged, and I know it takes time, but this flare up hurts 😥 Has anyone else noticed an increase in pain and the days following your first infusion? Is that normal?

[Littlepaw]

Hi Red,

I am sorry you aren't feeling well but try not to worry too much. I had an increase in what I call "circulatory flare" the first couple of times. I recently learned that ketamine has several modes of action that are unrelated. It is a sympathomimetic so it stimulates the sympathetic system...Which is counterintuitive for us. I can see where that might ramp things up. The NMDA blockade is responsible for the pain relief. Hopefully, things will settle soon and you can tell what is what.

Is it your arm that had the IV that hurts? You might try lidocaine at the site if it is bothering you.

I hope you feel better soon. Sending hugs,

[redraidermommy]

Originally Posted by Littlepaw

Hi Red,

I am sorry you aren't feeling well but try not to worry too much. I had an increase in what I call "circulatory flare" the first couple of times. I recently learned that ketamine has several modes of action that are unrelated. It is a sympathomimetic so it stimulates the sympathetic system...Which is counterintuitive for us. I can see where that might ramp things up. The NMDA blockade is responsible for the pain relief. Hopefully, things will settle soon and you can tell what is what.

Is it your arm that had the IV that hurts? You might try lidocaine at the site if it is bothering you.

I hope you feel better soon. Sending hugs,

Unfortunately it is my RSD arm that is flaring, and I had my IV in my left. I have not had a needlestick in my right arm since 2009. I woke up today feeling very agitated and have a syncope episode which I believe is unrelated, But the agitation is out of character for me. Is it normal to experience agitation after an fusion? It has my anxiety through the roof right now and I cannot stay focused at work. Thank you for any insight you can provide.

[Littlepaw]

Hi Red,

You know I almost mentioned a possible increase in emotions. Now I wish I had so you wouldn't have been concerned about it. Sorry about that. I thought maybe it was just me...

I tend to get a little emotionally off for a few days afterwards. My sleep gets a bit off also. This has happened pretty consistently for me and I just take it into account with how I'm feeling. If you are following the same pattern I've had, it should pass soon. If not call your doctor's office to let them know. They may need to adjust any other medications they put in. Versed is put in with my ketamine and we had to decrease it to the minimum as I don't do well on it at all.

I can't tell you not to worry about the syncope. As you said it may be unrelated and I really don't know...take care with that okay?

Hoping you feel better soon,

[redraidermommy]

Originally Posted by Littlepaw

Hi Red,

You know I almost mentioned a possible increase in emotions. Now I wish I had so you wouldn't have been concerned about it. Sorry about that. I thought maybe it was just me...

I tend to get a little emotionally off for a few days afterwards. My sleep gets a bit off also. This has happened pretty consistently for me and I just take it into account with how I'm feeling. If you are following the same pattern I've had, it should pass soon. If not call your doctor's office to let them know. They may need to adjust any other medications they put in. Versed is put in with my ketamine and we had to decrease it to the minimum as I don't do well on it at all.

I can't tell you not to worry about the syncope. As you said it may be unrelated and I really don't know...take care with that okay?

Hoping you feel better soon,

Thank you! I could not figure out why my emotions have been all over the place, and my anxiety through the roof today... Thanks for letting me know. I did get versed too, it always make me really loopy. I'll definitely keep an eye on my mood. I had a break down at work today, in my supervisors office of all places.

I'm seeing cards tomorrow for the syncope, and had a 2d echo on Friday, and I start the 30 day holter tomorrow. Hopefully I'll get some answers there.

Thanks again. I hope this flare calms down soon ;(