[Arsenicyellow]

For those of you that have done the 5 day ketamine treatment, how was it in terms of each day? My boyfriend is in NYC right now getting it done and it's his 3rd day or treatment today. He has already told me this is his last shot, having had type 2 crps after a car wreck 4 months ago.

Anyways, he originally asked me to come with him, but because of work, I could only arrive friday for the final treatment. Things since then have changed.

Day 1, he was a bit loopy, he didn't call me but would only send me texts, some of which sounded very negative and emotional. Like an idiot, he said something that pushed my buttons, we ended up fighting and he told me not to come to nyc anymore, that he didn't have the energy to fight. I understood but said I should come anyways... He didn't really say how he felt, but that he was very sleepy.

Day 2: we talk in the morning, he only mentions that his foot is not feeling good. Later that evening he's even more emotional, explaining that if this doesn't work its the end, suicidal talks, etc. He mentions feeling sick as a dying dog. I try to reassure him that its only day 2.

Day 3: This morning he mentions via text that his foot is swollen and the pain is still there, this was before today's treatment. I tell him to ask the doctor and tell them the pain is still just as bad, he says he will but that he's scared of the answer. His texts are more suicidal and turned off his phone before the next procedure.


I guess I just wanted to hear from people about their experience. I've read a lot of reports, but no one really mentions how things change day to day between the treatments. Did you find things stay relatively painful in the beginning of treatment? I'm trying to stay calm and collected while I'm still states away, but its getting hard.

He's undergoing a 5 day, 4 hour a day treatment in NYC with Dr. Brooks if anyone's had any experience with it. My boyfriend has been dealing with this and pushing me away, not wanting to seem weak, but its really getting hard for me, so any information would be helpful. Thank you.

[cdwall]

I can't help much on the day to day because I only get one day ketamine infusions. However, I get a huge dose during that one four hour treatment. You are not responsible for how you act or what you say while under treatment IMO. It's common for people to act crazy. More people will probably chime in here with stories.

The second thing is to be diagnosed at only four months into it with useful things already being done to treat it is like a miracle most of us never experienced. He actually has a chance at recovery or a good remission.

Hang in there. Don't take him too seriously except for the suicide stuff and then make sure he's monitored safe from his threats.

[Littlepaw]

Hi,

I imagine you are feeling very worried and overwhelmed right now. I want to say thank you on our behalf for being there for your boyfriend. This disease and the pain, fear and loss it brings can make us someone we're not. I would write off negative comments about the relationship right now because emotions are running high for him and anesthesia affects some people in this manner anyway.

I am currently receiving ketamine and if you have looked at my infusion thread you'll see I am on a very different protocol of a low dose every two weeks. I can't speak to your boyfriends protocol but I can say that my own improvement has been quite gradual. My doctor affirmed this is common when I asked him about it. When you say "feeling sick" I am not sure what you mean. We had to increase anti nausea med zofran for me to the highest dose and that helped tremendously. We also decreased my versed a little. Overall I still feel bleh the day of even at a low dose.

Does your boyfriend have other support? Any family with him or who can go? It is hard to go through procedures of any kind alone between the anxiety, the effects and the constant wonder if it is going to help. If he continues to feel suicidal please ask him to make a safety contract with someone that he will ask for help before taking action. He needs help getting through this. Many of us benefited from therapy, myself included, with someone who works with chronic pain and illness.

Four months is not very long ago. He is right in the throes of the hardest, scariest time. He must find a way to hold on to hope. 80% of people improve over time according to Cleveland Clinic CRPS specialist Dr. Stanton-Hicks. He must also be certain all work up and non -CRPS intervention has been exhausted. Nerve injuries are tricky but they can sometimes be helped surgically. If he has a repairable injury, scar entrapment or neuroma, a peripheral nerve surgeon might be able to do something to reduce his pain. The doctors for this are boarded in plastics reconstructive surgery and have done a peripheral nerve fellowship. Good information about nerve injuries and some of the amazing things they can do to help them can be found if you Google - Washington University Peripheral Nerve Program.

I also always recommend a video by Dr. Pradeep Chopra "CRPS Diagnosis and Management" that at two hours long is full of sound advice on treatments, things to do and avoid. He is highly regarded in the field.

Is he doing any PT at all? Gentle movement is imperative and pool therapy at this early stage could really help with pain and swelling. A burst of oral steroids can also help a lot early on to knock inflammation down.

Come back and let us know what happens and maybe direct your boyfriend to come see us if he is open to it. He will be warmly welcomed and supported by the great bunch of caring people we have here.
Sending prayers for healing and lots of hugs,

[Arsenicyellow]

So we got back from the treatments. I ended up going there despite him saying not to.
Treatments didn't go well at all and I don't know what other options there are. Me very day he talks about ending it. He already had depression before the accident and he's really losing hope.

He has another set of 5 day treatments starting in nyc on the 26th but he doesn't even want to do it anymore. I'm trying really hard to stay strong. Trying to find other routes to take but he's done everything.

It doesn't help that we missed our train and had to get another set. His dad has problems getting around and is disabled so him being around didn't actually help at all, probably made it worse.

I can't take off work this time, so I'm so scared of what will happen next time. I'm going to try and set up a gofundme campaign for him. But what other options do we have? He can't handle the pain at all and I care about him so much.

His depression makes it so much harder.

[BioBased]

If he doesn't want to continuing doing the treatments please find someone to prescribe LDN or order it yourself. Do not delay. I know where your boyfriend is at, I have been there. LDN saved me, because no one seemed to be able to stop the unbearable pain.
I thought I would never walk again and that I would be a burden to my family. Within a short time of taking LDN my mood altered as if a switch was flipped. I could drag myself up and downstairs. My balance returned and I could stand in place without falling over screaming.

[Arsenicyellow]

Is it hard to get perscribed? I'm really willing to try anything. I have a shipment of mxe coming in later this week that I want him to try. I'm just so frustrated, to the point where I have to try any option.

What sort of crps do you have? How long did the effects take?
We live in Boston by the way.

Also thanks for all the support and replies. It really means the world to me.

[Arsenicyellow]

Originally Posted by Arsenicyellow

Is it hard to get perscribed? I'm really willing to try anything. I have a shipment of mxe coming in later this week that I want him to try. I'm just so frustrated, to the point where I have to try any option.

What sort of crps do you have? How long did the effects take?
We live in Boston by the way.

Also thanks for all the support and replies. It really means the world to me.

Also how do you take/ ingest it?

[Littlepaw]

Hi Arsenicyellow,

Was the type of nerve injury your boyfriend had ever identified?

I promise sometimes they can do something to help. I had a nerve partially torn during a minor ortho procedure and had months of intractable pain until a peripheral nerve surgeon figured out from a "scratch collapse test" that I had entrapment and possibly a neuroma which are excruciating. During a 3.5 hour nerve repair surgery they found I DID have a neuroma and scarred down nerves. This operation changed my life for the better. I got CRPS from a later procedure. To this day I am grateful to my nerve surgeon who saved me from being balled up on the couch from morning till night.

Dr Michael Winograd at Mass General does peripheral nerve and he did a fellowship at Barnes Jewish Hospital in St. Louis which is where my surgeon trained. The internationally known nerve surgeon Dr. Susan Mackinnon is at that hospital in St. Louis. If he worked with her program he has excellent training. Mackinnon saved a young Canadian woman from CRPS 2. Poor girl had it for years before they found and fixed the problem.

If your boyfriend can stomach one more consult it would be worth knowing whether anything is to be done for his injured nerve. It never hurts to get information...

[BioBased]

Arsenic,

Hopefully your boyfriend will listen to Littlepaw, because she knows what she is writing about.

If he won't, he needs help and that help is LDN.

Low dose naltrexone is taken at night.
http://www.lowdosenaltrexone.org/gaz...ientGuide.html

My CRPS is from a crush injury to my feet I sustained at my job. It is now at the cold CRPS stage.

[Littlepaw]

Thanks for the support BB,

I wish I didn't know what I was talking about! I know I harp about checking out nerve injuries but that's because it was such a nightmare and because someone was able to wake me from it. MY nerve injury was more painful than my CRPS. Go figure! I always pray maybe even one person might suffer less if I spread the word and their case could be helped. Sadly, there are very few peripheral nerve specialists and what they do is little known.

For your boyfriend - Here is the article about Dr. Mackinnon changing a CRPS 2 patients life;getting her out of bed, back in the world, off almost all meds, going to college without nerve pain. Especially amazing in that the young woman had it for many years. You'll note it is from the RSDS website. Might be enough to persuade him to get a consult or even two. I had to go out of town for my surgeon and he's worth every mile on the road. Oh and fair warning - don't freak about the crush/cauterize statement. That's how it's done by the experts to keep a neuroma from forming or re-forming.

http://rsds.org/wp-content/uploads/2...eve-CRPSII.pdf

Feel free to PM if you have questions or I can help.