Hi
 

Good Morning everyone, hopefully its okay to post here and introduce myself: Im Dee and its been awhile since Ive been online talking to other RSD'ers ( is RSD'ers a word :confused: )

Ive had RSD for 5 yrs or so now, and I think I have tried just about everything out there for it...well at least that which I know is out there

I do get ketamine infusions, Ive had SCS trials, inplant inplanted and removed, meds, and the list goes on as most of you know...

I spent a couple years in a wheelchair and now I use a cane. I moved to AZ because the east coast weather was making it worse for me

I have a wicked sense of humor so plz bear with me :eek: I look forward to getting to know everyone and hopefully I can contribute a little knowledge ( very little, this RSD really fries my brain lol) seriously though I am more than happy to share what Ive learned over the past few years

Dee

Hi Dee,

Welcome. How long have you been getting ketamine infusions? What dose do you typically receive? And how often? Just curious....how much have the infusions helped you? I also get ketamine, on an outpatient basis, I just started in the spring.

I live in southern New England, and the current change in weather is especially tough, even with the ketamine I can feel it. A move to a warmer, drier climate like Arizona sounds really awesome just about now. Unfortunately, we've got way too many committments to even consider such a thing for quite a few years. Enjoy the warmth...

XOXO Sandy

hi Sandy
 

Hi Sandy and thank you for the welcomes :hug:

Ive been getting ketamine infusions since 2006 or 2007 (brain fart sorry), started getting them low dose at Beth Isreal in Boston every 2 weeks...worked only short term, very short term, but insurance did cover it for the most part.

I then found and talked extensively to a doctor in CA, and went in '08 for my first 6-hr medium dose? (for lack of the actual dosage offhand, need to dig through box of med records) I think he borders right on the acceptable limits but if it works...and it does for me, who am I to say what is acceptable :D

After an infusion, he then puts me on ketamine pills for one week tapering the dosage. This is what has made life more tolerable for me and it got me out of that wheelchair; I do still hurt and I have to use a cane but I sure am a lot better off than I was.

The weather out here makes such a difference too, and although they have a couple creepy critters that really wig me out, I will take seeing them every once in awhile over seeing snow lol.

I feel for ya living in New England, and will hope for a mild winter for you :)

Thank you again for the welcomes

Hi Dee
I'm new to these boards and was diagnosed with RSD around six months ago, I think I'm still in denial. I just finished a series of nerve blocks to see if it helps (I did have some improvement but it didn't last which I guess is common) btw, If RSD'ers isn't a word, then it should be :p

Hi
 

Hiya CalamityKT,

sorry to hear you have RSD but happy you found this place which can be a wealth of knowledge/support to someone newly dx'd with this, course its also a wealth of knowledge/support to ones who have had it awhile as well.

I remember the first time when a doc mentioned RSD to me and Im like what is that and your making it up, sadly he turned out to be correct :o

Hang in there though, finding the right doc is a biggy and they are making progress (although slowly) with how/what they choose to treat us RSD'ers and I am always here to lend an ear if you need it

p.s sending memo to Webster's, maybe they will add RSD'ers lol :D

I saw a few docs at the BI in the spring of 2009 - I had hoped to get into their ketamine program but they broke my heart and turned me down - they didn't even diagnose me with RSD, despite numerous previous such diagnoses by highly credentialed docs and overwhelming evidence. It was truly an awful experience for me.

A year later, I ended up with Dr. Getson in Marlton, NJ doing a 10 day outpatient protocol in April of 2010. Getson is awesome and has a nice facility. I then went to 2 days a week for a month, one day a week for a month, etc. tapering to once every 3 weeks. My current dose is 200 mg. and since August, I've been treated here in RI with a team that just got licensed to perform the treatments. So far I've had 27 infusions. I need them often, since they wear out in just a few weeks. I tried to go 4-5 weeks without an infusion once and it was much too long.

How long can you go between infusions by getting a large dose and taking the oral boosters? Using a sick day from work every 3 weeks for my infusions is consuming all of my compensated time. I would love to figure out a more efficient way to do this. I returned to work in June after a year's sick LOA.

XOXOX Sandy

hi
 

Hey Sandy,

Sorry bout BI, I had heard it was hard to get into there but I somehow got lucky and was one of their first ones to get the infusions there, only problem was, is that the doses were low and I had to go back every 2 weeks.

My RSD doc in NH was Dr. Ralph Beasley, that man is a genius, but due to NH laws, he couldn't do the infusions he knew I needed, and Im thinking he must of had something to do with me getting into BI....my memory just isnt what it used to be...

My current dosage as far as I can remember, and I may be wrong, is between 1000-1200 mg, I will know for sure when I go back in a few weeks or I find my old records ( shamely Ive lived here in AZ for a year now and I still have boxes to unpack :eek: ) it is a higher dose and I think he comes close to the fine line that is set for ketamine

After the first infusion, I spent the next 6-8 months learning to walk again and getting out of that wheelchair. My therapy can make it possible for me to go 8-12 months without getting another infusion. Dont get me wrong, I still hurt but I am better able to tolerate it. I do not take Methadone any longer though which always did worry me....but thats just me. My doc doesnt make any guarentees but I figure what do I have to lose?

Hope I was helpful and sorry for any typos, talk soon k
Dee

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 :grouphug:

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

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
 

Good morning Loretta and thank you for the welcomes :hug:

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 :D

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

hi
 

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 :D

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 :cool:

hi
 

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. :D

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 :p

Hang in there, and hope to talk again soon
Dee :cool:

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.