Doing Horrible After Ketamine - Now What??
 

Hi everyone

I'm sorry it has been so long since I posted. I have not been doing well and every day is a struggle to get out of bed and do pretty much anything.

I have been doing ketamine at Hahnemann in philly and I am seeing one of Schwartman's partners...not actually Dr. S. I completed the 10 day outpatient plus a couple of the boosters. I just had 2 boosters last week and now I have to wait 3 months for the next!!!!!!!!

I have no idea what really happened to me. I'm worse than I was before I started the whole ketamine process. The Doctor says I have "maximal RSD". It's entirely full body and affecting my internal organs as well. The RSD is in my eyes..my right eye really bad and also I now have trouble swallowing, chewing and talking. I look like a giant strawberry! I am RED all over and swollen. It's horrible. My face looks disgusting along with my entire upper body. At least I can cover the rest of me with clothing at the moment. I hate it! I absolutely hate it! I can't sleep! I sweat so bad..full body! I look like I just got out of a swimming pool. Then I get the chills and freak out. Throughout the day, I will just get so hot and start sweating and feel like passing out...then it stops. I get dizzy and everything. I also turn even more red! I am so embarrassed to be seen in public anymore. I hate being around people because I'm embarassed and feel horrible. I have now slumped into a hermit shell and don't want to come out. I change my sheets every day. I also have bladder and bowel issues now which is even more embarrassing. I have trouble walking and using my hands now. Every joint in my body is inflamed. I can't even pick up an empty cup. I have atrophy in my feet and now starting in my hands. WHY!!!!!!!!! I don't get it! The 10 day ketamine helped..I felt great during it. Now I hate life. I hate waking up every day and feeling this way. I don't know what happened with these boosters...they didn't work? Also, I did have issues with the IV. My husband had to pull over on the way home the first day to pull the IV out. It kinked in my arm and was bleeding and hurt so bad I really did almost pass out. I couldn't breathe! it was horrible! Then the next day, she blew 2 veins! What a mess!

They are telling me I can't come in sooner for ketamine because it's "out of protocol". I think it's BS! My Dr is still trying to get me in for the 5 day inpatient ketamine. I'm waiting to hear on that but that can take some time. In the meantime, now what???? My Dr has not returned my phone calls and I am miserable! I need help and don't know what to do.

Can anyone give some advice here as to where to go next? I'm afraid it won't be long before I'm completely bedridden.

This cold weather sure isn't helping either! I am really hating this winter!

Take care everyone...

Dear Momzpeachy....

I am so sorry for everything you are going thru..Just when we think we have one step ahead we get set back a few feet huh???? Not sure but my thought is you are having an adverse reaction to the Ketamine????? Possible??

Rest and try to relax.... it sounds so upsetting but try...:hug:

Dear momz
It grieves me to hear about your condition, Im hopeing that it calms down, and maybe as KS said,Its a reaction of some sort,please know that your in my prayers,,,,Also I noticed your in P.A,,,,,they have terrible winters,,,,,keep posting,vent,stay positive somehow,,May the Lord give you relief,,,,,,,,,,,,,bobber

I had 3 day ketamine infusion back in december. I then made a trip up to see my sister in oregon... I live in bright 70 degree sun shining southern california... Orange County to be exact. And when i made the trip to oregon it was 30 degrees and i felt that same way... worse off than i was before i even had ketamine. I then had to have another series of infusions when i got back and it is around 70-80 here now, and I am doing MUCH better. I keep our house at least at 75-77. Cold weather sucks... my advice... move to the west cost where we can get you some sun shining weather :) Hang in there :) I am rooting for you and I know the feeling of feeling worse after going through all those days of ketamine. It is so tiring, and after our bodies are so tired, mentally it is a challange to get back up- but thats what we have the Lord for... :) rely on him its the only thing that gets me up in the morning. Have faith that tomorrow will be a new day. Bless your heart for all you have been through and come and vent to us... makes me feel important replying ;) hehe. I am 20 and am attempting at managing so dont forget... im rooting for you!!! :)

i sent you a private message. I hope you will feel better and will be praying for you tonight!!:grouphug::hug::grouphug::hug::grouphug:

Dear Momz,
I wanted to reply to especially let you know that you are being heard, so that you don't feel so alone in your pain ...
It so hard to understand why the doctor isn't returning your calls when you are in such distress. Please call again, and let the office staff know that it's urgent and an emergency. It sometimes takes those words to get a response and to get past the front office staff..tell them you may have had an adverse or allergic reaction and need to be seen..

I would suggest epsom salt soaks to ease your inflamed joints, but you need to check that with your docs!
You have been through so much...including the pain from the I.V.
Please try and rest and stay as relaxed as you can, as that can ease the pain..and help you stay positive, even if just a little bit..
We are here for you..:hug:
Hope4thebest xoxox

Dear Momz,

I recall that even after your initial first dose or 2, you felt that the ketamine wasn't as successful as you had hoped it would be. I am so sorry that you are where you are at the moment. Please keep positive thoughts!! Stay warm, remain active, talk to your doc. Perhaps you can try to control your pain and other symptoms with medications like Neurontin/Lyrica and all the others until alternative methods of treatment are identified.

Please don't ever, ever give up. You are extremely fortunate to be receiving treatment from a great specialist right now. Take care and know that we all care about you.

XOXOX Sandy

Sounds terrible. Sounds as if you should have been taken off!
Now what will they do for you?

Prayers....

pete

Are you taking any pain relief medicine at all other than ketamine boosters?

I was wondering the same thing as JimKing, because if your taking any kind of morphine that could cause the hot and cold sweats.

I sure do hope they get to fixin ya up, and you are in our prayers :hug:

Thank you so much for all of your replies and prayers. I finally got on the computer today and feel like typing. I've had a rough week and havent felt like doing anything. Talking to anyone has been difficult. I had a breakdown the other day and just shut down. Wednesday was awful. I spent pretty much the entire day crying. My Doctor's office called me (not the Doc of course) and she told me "no more ketamine". I can no longer have the ketamine boosters and I was removed from the inpatient list. I was really upset because I was just weeks away from doing the 5 day inpatient. I was hoping that would work. I did have a reaction to the ketamine. I am feeling better now and I can swallow once again. It did feel like an allergic type reaction. It also seemed like the RSD got worse which she said can happen. It was an adverse reaction and it just doesn't seem to work for me. Nothing does! I'm allergic to EVERYTHING and that's not a joke...I mean everything! I can't take most meds out there and when I did the allergy testing it showed that I am allergic to everything. They couldn't believe it. Morpheine is the only thing I can take and I was on it for almost 3 years and found that it can progress the RSD. I was taken off of it.

Currently I'm taking 2400 mg neurontin daily, 60mg cymbalta, and something for headaches that I can't remember the name off hand. Not much really. That's it. I'm in lots of pain and feel like crap. Today was a little better. The weather got a bit warmer so it helped. I'm just really really having a tough time. My face is so swollen and red. Actually my whole upper body is. Now my skin has also changed alot and is so shiny and pulling tight. It looks horrible. My skin always feels sweaty and gross. I wouldn't wish this on anyone.

Can anyone help me with what can I do to feel better? Any techniques. I want to stretch but it's hard. I so badly want to exercise but can't. 5 minutes of exercise puts me into a bad flare. I have gained so much weight. I'm flat out miserable and now I don't know where to go with this. I don't want to live the rest of my life this way but I don't have a choice. Some days I do wish I'd go to bed and not wake up or when I do wake up..all this would just be GONE! wishful thinking.

Take care everyone..I will hopefully keep posting..I need to vent and all of your support will help...thank you :)

I will try and respond to those who pm'd. I can only sit here for little bits at a time. If you want to talk by phone..please send a phone number. I can call you. Thanks again!

Dear Momz,

I'm sorry about your allergies. How relaxing in a warm water bath with epsom salts? Mindfulness Stress Reduction techniques have helped me a lot as well, just learning to relax and ease the muscle tension in my body. FMichael has posted a lot on the subject.

Also - Loretta is waiting to try HBOT, which has helped a number of people with RSD and maybe could be an option for you.

Never, never give up. Spring and warmer weather are around the corner. Please hang in there and know that we all have you in our prayers.

XOXOX Sandy

Hi Momzpeachy, My heart goes out to you. I know how it feels to be full body or generalized. I hate the sweating entire body-the redness, and skin blemishes or break outs. I have a room in our house, where I hide out, and pretty much like to be alone. I've had RSD 15 years ago-diagnosed 11 years ago. My husband is very supportive, although not at the beginning when none of us knew what was going on. It was 4 years before a diagnosis. Our daughter is 30-married 9 years. They moved to Chicago from Arizona 2 years ago and have been back for a year. They are staying with us for a few more months. He flys for one of the airlines and our daughter has worked for the same court reporting firm for 10 years. I'm grateful for everyones support, now that we all know what is going on.
Have you checked out HBOT? I'm going to try it, as soon as I save the $$.
I had very good success with physical therapy and massage therapy. Got full range of both shoulders back. It was very painful, but I'm so glad I stayed with it. Also, one of the biggest helps for me was swimming, and water exercises in the pool-86 degrees. It was kept my toes from curling up. There are gym clubs and Y that have pools for very little $$.
I hate the weight gain too. I had always been thin and very athletic. My daughter and I played tennis-5 days a week, water skiied, snow skiied, horse back riding. aerobics, dance classes. 10 K runs. I had a wonderful psychiatrist that helped me thru the losses.Also miss traveling a lot. But, I think it's like the earthquake, some lose their legs, but are happy to be alive and find other things to be grateful for. That helps in healing. I have several 'tools' that help during 'low' times. I Cry, too, but some of my tools are
music, scented candles, meditation, visualization, journaling,j comedy, sports games, sending cards to friends, keeping in touch with you dear friends, reading, e-mailing, stetching, massage, light exercising, do my nails, I'm on a high antioxidant diet, healthy chocolate. The cocoa bean is the #1 highest antioxidant in the world-the one I eat has a patented cold pressed method formula, thus not loosing nutritional value thru the cooking process like other chocolates. It also has the #2 highest antioxidant Acai Berry from the Amazon Forest. I know I won't be at peace with myself, till I loose that weight I gained from Neurotin and Lyrica. I really feel, I'll be able to cut down at least one of my high blood pressure meds, with weight loss.
So I'm working on healthy eating, exercise, and running a small business from my bed, healthy chocolate.
I wrote you last week by private message. I gave you a website with a lot of good information. Please don't loose hope, I know it's awful to deal with, but we aren't alone.
Last week, when I saw my RSD Dr., he told me about a RSD patient. There was a car accident here in Phoenix. Two cars collided on the freeway and hit a metal fence. One of the poles became a air missle and went thru the windshield of this ladies car. It took off her little finger and part of her arm and impaled her shoulder to the back of the seat. She had 18 surgeries. Her neurologist asked my neurologist if he would take her has his patient and do the HBOT series on her. She had frozen shoulder and couldn't raise her shoulder. After 9 treatments she was waiving to the TV crew. The tv crew came out and interviewed her and my Dr. I went thru 100 pt treatments to be able to get full use of my shoulder when it became frozen after breast surgery. plus 100 massagae therapy treatments.
The VA Hospital in Florida just put in 16 brand new HBOT for treatment of the wounded etc.
Take care of yourself, loretta with soft hugs:grouphug:

So nice to hear from you all!!!!

Momzpeachy... I worry about you and that you are so sad..as we can all relate and we sink to the bottom at times... Thats when all of our friends here jump on and pull you back to the top..cuz you need support and you need us..we are here fro you and know that we share you desperate sad feelings.....

I see myself in the future going thru the same reaction with the Ketamine as yourself...possibly, as I can not take anything due allergic/ bad tummy reactions..to everything... I mean everything..I am cold turkey RSD.. no drugs for help for my pain.. not even a patch as I can tak it off my skin due to the sensitivity of my skin....so I will take heed when my time comes..I am due to go to Dr. S in March...see we learn a bunch from each other here...

I agree about the relaxation techniques as I 've tryed it all..even acupuncture.. no luck there either but I do like my music and quiet..oh sure i have days I would like to cry.. (get this) I am not a cryer...I think I have only cryed, really cryed once since diagnosised 2+ yrs. ago... just can't do it! I am newly out of work (1+ months) due to my inability to physically do it anymore... I fought a galant fight to stay I will tell you....25 yrs. there but now .... my days are quiet... I slowly monuver thru my days here at home now..having my music in the background, light chores and talk with my friends here...still adjusting to my new routine...

Loretta, I am excited to see what your outcome from the HBOT treatment will be... My Dr. had encouraged me to do it also..but that very day at my apt. she placed a call to the hosp. where it is performed, she was told I am not a candidate due to the stage of my illness..too advanced.. so we have not explored that thought since..

To everyone here...we all need lifts and encouragement and advice from day to day..I know you have all made me feel better and educated and encouraged me...Time to lift momzpeachy and Kate up and many others as we can not let our RSD get the best of us..it would be easy to let it control us...but we are in control and it needs to stay that way...

Much love to all...

KS:grouphug:

Dear Momzpeachy,
Wow, what is going on with your body? It is insane that you are having all these problems and Dr. S office isn't helping you in any way? I am a patient of Dr. S too and it sounds real odd that they even let you go home in the condition you were in. I think you need to call HIM and no one else about this and see what he says and then call your family doc for some relief. RSD is bad in itself but to have all the other problems you are having is too much for one person to handle.

I see you are in NE PA...so am I. I am in Levittown which is about 13 miles NE of Phully. Just curious. It is nice to know we are all so far away from each other but are really brothers and sisters in RSD. I hope you are feeling better. I just thought of maybe you could take Benadryl since you are having an allergic reaction to it all. Maybe it would calm things down a bit. Just a suggestion. I have the children's liquid so I can control it more. Maybe you could give yourself just a small bit and see how you react to it. Maybe it will make you sleep which would be a Godsend right now. I pray you will be better soon.
Best of luck,
kathy d