Ketamine Update

[Gingergrrl]

I am not a religious person, but if anyone here is religious, please pray for me. I am at the bottom. I really am severely ill and need as much help as anyone can muster...if nothing else, in positive vibes sent my way.

@Misfit Toy I will be happy to pray for you and am tagging @rosie26 (who also posted in this thread) and know she would be happy to pray for you, too.

Whatever you do, don't make any impulsive decisions right now while you are in so much pain. All you need right now is the basics- drinking water, eating any food you can tolerate, sleep (if you can- not sure if you are still taking Xyrem?) and hopefully at your appt tomorrow you can get some feedback on pain meds, or the Amino acid shot, or something new to try. I know you also had a bad reaction to Valtrex this week which still may be clearing your system.

Please wait it out and let us know how you are doing tomorrow and know that lots of people care about you a lot.

 

[Misfit Toy]

@Gingergrrl -I am in bed but scared to turn the light off. I dread what tonight will bring. Last night, every muscle was twitching. My ears are ringing...everything is crazy.

I would not end my life yet. I would need to think of how I would do it. I would need to do it right.

I have to stay away from meds including Xyrem which completely messed me up. My system is tired of meds right now.

Anyway, thank you. I mean it.

 

[Gingergrrl]

@Misfit Toy, I didn't realize the Xyrem caused a bad reaction and in that case, definitely do not take it! Also, it is okay to sleep with the light on or whatever you need to do.

Can you page your pain doctor and tell him/her that this is an emergency due to the level of pain you are in and need help? I want you to sleep, b/c I know you are three hours ahead of me time-wise, but I will be up for a while and will keep checking this thread in case I can be of any help.

 

[Misfit Toy]

@Gingergrrl -I am going to leave a light on. There is nothing they can do. I am on fentanyl. I need to calm down. I need to mentally calm down.

Thank you for checking in. I will let you know how it goes tomorrow. I feel like a bother to this community.

Thanks for your compassion and concern.

 

[Aileen]

@Misfit Toy You are not a bother to this community!! This is what we are here for. To support each other.

So many of us have been in a place similar to you. I have. You just take it one minute at a time. You can get through this. One thing that is critical for me is not to think too far into the future. When I am in really severe pain, I find I can't think more than 5 minutes ahead or I get overwhelmed.

I just try to keep my mind occupied with simple, meaningless stuff. For some reason making mental "lists" seems to help. How many girl's names that start with "C" can I think of? Name the US states (I'm Canadian ). How many different kinds of Campbell's soup are there?

When you've managed to kill a couple minutes, congratulate yourself for getting through those two minutes. Remember, the pain will get better at some point. And you are now 2 minutes closer to it. That feeling of accomplishment, small as it is, seems to help me mentally.

Just a few ideas. I'm sure you have lots of coping tricks of your own by now. Sending lots of prayers and good thoughts your way.
Aileen

 

[maryb]

@Misfit Toy
hope you slept better...I do pray for all those suffering so much.
It seems so hard to find stuff that works, what works for one doesn't for another. We just have to keep pushing on. Feels so difficult at times, we understand.
Its another day and hopefully a better one for you.

 

[Valentijn]

@Misfit Toy - Are you able to take magnesium and/or potassium? Sometimes one or the other will help with muscle spasms.

 

[zzz]

@Misfit Toy - Are you able to take magnesium and/or potassium? Sometimes one or the other will help with muscle spasms.

Excellent idea! It may take magnesium injections to get enough into the system to make a difference.

Dr. Jay Goldstein was often the last stop for desperate people. He treated over 20,000 ME/CFS patients, and by the end of his career, he could significantly help almost anybody. About twice a week, he would have people tell him that if he couldn't help them, they would kill themselves. He never failed to deliver. For people like these, or other people who came in in terrible shape, sometimes being carried, he had what he called his "resurrection cocktail". It was a combination of IV ketamine, IV lidocaine, IV TRH, IV ascorbate, nimodipine, and gabapentin. (I can give give you quantities if you want). This "cocktail" never failed, although obviously it was a temporary solution while he worked out a more lasting treatment. If you can get your doctor to give you this, it can allow you to take a huge step forward. And if this is too much for your doctor, see if he'll go for just IV lidocaine, which helps almost everybody, and is quite safe. The dose is 200 to 300 mg in 500 ml of normal saline infused over two hours. This alone, repeated periodically, is an extremely effective treatment for ME/CFS.

For more details, please see Betrayal by the Brain. (I just finished reading it tonight.) Goldstein lists a number of medications which are tried in series until the patient is asymptomatic or nearly so; these work for the majority of ME/CFS patients. The book is extremely technical, but with the cooperation of your doctor, you should be able to get a lot of benefit from it. The follow-up book Tuning the Brain takes up where the first book left off, and allows the skilled practitioner to, in Goldstein's words, "significantly help almost every patient." Any skilled doctor can do this, but it takes someone with a lot of intelligence, patience, and a willingness to work outside the boundaries of traditional Western medicine. Western medicines are used, and are used exclusively; they're simply used in a very unorthodox way that few people other than Dr. Goldstein could understand. Fortunately, he provides a "cookbook" method for using these medications, so a complete understanding of all aspects of his theory is not required.

 

[Misfit Toy]

@zzz I am interested in hearing this. My doc used to give me the Meyer's push but it stopped working.

I do take magnesium. I am not sure if my doc does this IV, but I can inquire about it. I know any IV with Ketamine is extremely expensive and I would not be able to afford it. I looked it up.

BTW, I am extremely low in Magnesium. So so low.

 

[Gingergrrl]

@Misfit Toy I ended up not sleeping much last night too (for different reasons!) but wanted to check and see how you were doing. You must be at the appt for your hand now or soon.

I mostly though wanted to re-assure you that you are not a bother to this community as you expressed in an earlier post. That is what we are here for, to help each other, and you have helped me several times and reassured me when I was struggling and I am happy when I can do the same.

I wish there was more I could do to help you. Sometimes a university hospital does clinical trials on IV Ketamine but do not know for your area?

 

[Misfit Toy]

I slept about 6.5 hours but I m beat. At hand docs. I'm sorry you didn't sleep. That is the worst. Ketamine is done at Drexel University here. It's very expensive and it's not covered by my insurance. It's great for RSD but I don't think they would put me into a coma. I hope there is a better way.

I was diagnosed yesterday with a fibroid. It grows every year. It's now the size of a tennis ball.

I have no appetite anymore. I never want to eat.

 

[Misfit Toy]

@Gingergrrl -I hope you are sleeping...you need it. I am going to take a nap, I hope! My hand is hurt. I tore a tendon. I broke my wrist years ago and I found out today that it didn't heal properly. So, I tore it and it needs to heal and if not, I have to have an MRI.

Next week I have a cat scan of my thyroid, as my thyroid is super large.

 

[Gingergrrl]

@Gingergrrl -I hope you are sleeping...you need it. I am going to take a nap, I hope! My hand is hurt. I tore a tendon. I broke my wrist years ago and I found out today that it didn't heal properly. So, I tore it and it needs to heal and if not, I have to have an MRI.

Next week I have a cat scan of my thyroid, as my thyroid is super large.

@Misfit Toy I slept for a few more hrs so probably close to six total which is okay. The Famvir gave me a headache & muscle or nerve (?) pain again after two days of being better. But nothing as severe as what you are going through and my heart goes out to you.

I am so sorry about the torn tendon in your hand and thyroid stuff. I had an ultrasound of my thyroid last year b/c I have Hashimoto's but have not had a cat scan. Hope it all goes smoothly. Go take a nap, you deserve it!

 

[Misfit Toy]

@Gingergrrl --mistake...ultrasound! That's what I will have.

I need some sleep. Much more. I appreciate it. Here's hoping. Well, I slept 6 hours last night, so some praying conjured that up!! I also have Hashimoto's.

ps--I hope your pain abates. I am sorry, pain is horrid. It's awful. Mental anguish and pain...stink.

 

[Gingergrrl]

In that case, the thyroid ultrasound was easy and painless so don't worry about that one!

Now go to sleep for real!

 

[PNR2008]

Get better very soon both of you. Thinking of you.

 

[zzz]

@zzz I am interested in hearing this. My doc used to give me the Meyer's push but it stopped working.

I do take magnesium. I am not sure if my doc does this IV, but I can inquire about it. I know any IV with Ketamine is extremely expensive and I would not be able to afford it. I looked it up.

BTW, I am extremely low in Magnesium. So so low.

If you are really very low in magnesium, that needs to be addressed, as it can cause all sorts of problems, including severe pain and heart problems. The Meyer's push contains magnesium, so your doctor definitely can do magnesium IV for you.

The IV ketamine was usually done by Dr. Goldstein as a one-time treatment. It is not essential. IV lidocaine should work very well in getting rid of your pain. For cases of severe pain, Dr. Goldstein finds that IV lidocaine is a rapidly effective analgesic. He continues:

The effect sometimes lasts for days or weeks, perhaps by inducing long-term potentiation, and often global symptoms are improved. About half of my patients respond to this treatment after being refractory to all oral agents. IV lidocaine is the single most effective treatment I currently prescribe. It has the unusual property of greater symptom relief and duration of action with each successive use, plateauing after four infusions, and lasting three to seven days.

The magnesium can be given IV with the lidocaine, but for best effect, the magnesium should be taken daily. One way is to inject it IM with taurine; the taurine acts as an anesthetic, as well as being a very useful nutrient. From Dr. Cheney:

Many patients benefit from magnesium injections, which are virtually painless with the addition of taurine. The Magnesium used by most is Magnesium Sulfate—standard 50% solution—1/2 cc drawn into the syringe first, followed by 1 1/2 cc's of Taurine. The Taurine is compounded at 50 mg/cc. The taurine makes the injection virtually painless and the ratio eliminates the hard knots many are familiar with. The injection is intramuscular, given in upper, outer quadrant of either buttock. Both require scripts from a doctor.

You can also take magnesium by nebulizer, which is extremely inexpensive, and about as effective as IM magnesium when done properly. Dr. Sarah Myhill discusses both techniques in detail in the articles Magnesium by injection and Magnesium by nebuliser. The dose for the injection is the same as the one used by Dr. Cheney, but Dr. Cheney's use of taurine is very effective in making this nearly painless. Your doctor can help decide which of these is best for you.

Getting your test levels of magnesium back to normal does not by itself mean that you should stop the magnesium supplementation; usually it's an ongoing thing. Also, some types of tests are more accurate than others. Which one did you have done?

 

[Gingergrrl]

@zzz Is there a magnesium test that is considered the most accurate? I'd love to learn more about it if you have any details. I take Magnesium supplements every night and sometimes test low but other times test normal.

 

[Misfit Toy]

@zzzz -I am on Natural Calm. Is that enough? Probably not. I am also low in Taurine.

I could do magnesium IV. I have to see how much the lidocaine is...that can be super expensive and I am not rich. I am on SSD.

Will look at article you left a link to.

Thank you!

 

[optimist]

@Gingergrrl I am not a religious person, but if anyone here is religious, please pray for me. I am at the bottom. I really am severely ill and need as much help as anyone can muster...if nothing else, in positive vibes sent my way.

If life is to be like this for the next 40 years of my life, I will have to check out. I can't do this. I just can't. I have been strong enough....I need some peace.

Praying to Jesus for you @Misfit Toy! I pray that He may bring healing to your life and strengthen you!