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Thread: dejerin arndog anyone MJ symptom directed

  1. #1

    dejerin arndog anyone MJ symptom directed

    I'll try to be brief. doing poorly, increased pain nociceptive, neuro, CP. and extremely increasing spasms, losing ground fast. losing my hands, leg fuction deteriorating, vomiting, passing out from pain, losing B&B during extreme episodes

    eval this past week. doc believes based on films, consult with surgeon who was in my spine last nov, it is scar tissue, stenosis, degen disk disease. 2 herniated discs, scar tissue being #1 as the surgeon said the amount of scar tissue removed was scary and that I grow a lot and fast. Surgery = scar tissue, no good procedures for multi-level stenotic cervical canal and already CP so no a viable option.

    They have (me too) really discouraged any surgical options especially the cervical, broken self-fused C2-3, cervical stenosis worse, but T&L as well. just trying more drugs and increasing baclofen and clonidine. wants me admitted to play with meds, versed +???.

    Diazepam is my only friend but harder and harder to get??? and decreasing efficacy.


    Real Question. Marijuana. Personal experience to date not beneficial, unknown strain, organic, friend who just wants to get high as a kite.

    Anyone have real data or significant empirical data / knowledge of appropriate strains for spasms / pain? any impact on CP.

    Understand I am not seeking medical advice :-),
    but some of you are knowledgeable and study this CP and pain, CT only gives MJ cards for cancer but would visit CA or have friend go in get card, purchase appropriate strains and transfer. I don't care about the legal implications anymore. I am very close to done. spasms 20-24 hours a day again on top of al the other pain issues. trying to hold on.

    apologies any ambiguities, repeats, run-ons, really rough.

    ket

  2. #2
    Ket, I tried the strain that's supposed to be calming and good for spasticity (forget the term for it), and it made my spasticity a million times worse. This was from a medical dispensary. I was scared to death for 8 hours because my blood pressure soared and heart rate was incredibly fast. This was after eating only half a piece of a candy edible. ER doc told me it's because plants are being bred these days to produce ever greater amounts of THC - not like the pot of yesteryear at all. With your existing spasticity issues, if you try it again go very, very slowly and start small. The ER doc said they're seeing more and more bad reactions of this kind.

    Edited to add: I have myoclonus where my legs jerk rhythmically every 15-20 seconds during a bad bout - on the "medicinal" pot, there was no letup for the whole 8 hours, just one solid hard spasm. This might not happen to you, of course, but if you try pot again start with a very small amount and wait for an hour to see what develops.
    Last edited by Bonnette; 05-04-2014 at 01:03 PM. Reason: addition
    MS with cervical and thoracic cord lesions

  3. #3
    I'm sorry things are not going any better Ket. I wish I knew of something that would help, I've never tried using MJ, it isn't legal here in TN, and that's the only way I would try it. There are days I would be tempted, but wouldn't have a clue where to get it anyway. I've heard others that had the same issues as Bonnette, and others that swear by it, and I'm sure you've seen just as many posts about it too. They talk about making it legal, so I'm also interested in the reactions of others.

  4. #4
    Bollefen

    Oh man. I hate to hear of what is happening to you. I will try a little comment.

    I could be wrong, but I think extreme skill in spinal surgery is not all that common. Several people emerge as tops, but their programs seem designed for the surgery itself. A comprehensive program that really addresses all the issues of repeated complicated spine surgery would have to include family counseling, life style modification arrangements and a ton of other things that to my knowledge are at best fragmented and at worst nonexistent. So you have this incredibly reduced person left to try to fend for themselves in the practical aspects of living in severe pain, while trying to make big time decisions.

    Scar tissue is said to reduce or shrink over time, so it seems like all reasonable effort should be made, and some unreasonable effort as well, to buy you time until you ease a little.

    I have not experienced trouble getting benzodiazepines such as diazepam, so I don't understand why it is getting harder for you to get. They are controlled substances, and doctors generally are getting gunshy about giving anything the feds might be upset about.

    Question: Does immersion in warm/hot bath help your muscle symptoms. Does massage? I read about tanks with epsom salts to float you, but they cost around ten thousand dollars, so I built myself a float tank, about six and a half feet long, out of plywood, silicone glue, and epoxy boat paint, with a spa/hot tub motor that circulated water in jets that I got from a spa store (came out of a used spa). total cost about two hundred. I wore a scuba mask and floated on my stomach, with my limbs dangling. It helped, but the sheet rock began to get moldy in that room, so I had to look elsewhere to ease the soreness in muscles. (dysesthetic soreness, not real soreness, which is not as painful). When mold was a concern, I finally found a latex foam mattress topper that tended to go easy on me when I laid down, permitting more sleep which was helpful. How about electrical stimulation with a tens unit. (be careful, tens made my lancinating pains more widespread). Do you have a soft sleeping surface? Can you get any sleep. I am worried you will go frantic, even more frantic, if you cannot even get a little sleep. Seems like diazepam might help there also.

    If you could get someone to use a vibrator massager on your limbs, that might have application. Sometimes with muscle cramping sensations, it is necessary to fatigue the muscles first, by pushing into the muscle belly for about three minutes and then giving a little massage. You have to be creative about it, as the ordinary approach may not work.

    Bollefen, your posts show you to be a very intelligent person. Your questions show, unfortunately, great familiarity with what medicine cannot offer. You have clearly been through the mill. I guess I would just suggest trying to find personal support from somewhere, anywhere, while not getting your hopes up medically. I don't know anyone who can really prevent or shrink scar tissue, although there may be something out there. I think i would look for comfort any way you can find it, even if it is just music you enjoy listening to or whatever. I realize the inadequacy of treatment and the very slight help from meds, but you are such a fine person, I hope you can find a way to continue. I really do. Are you religious. Could a minister help? Maybe call united way or some organization like that, just to help out at your house.

    As to the medical end of things, if you are getting treatment in N.Y. that is likely to be about as good as anything. So it may be up to you to just hit rock bottom and see what is possible to help you get by each day. You aren't going to be able to enjoy the ordinary things, but perhaps there is something, however simple or passed over by others, that can bring you a little distraction. Again, you gotta try to get some sleep.

    As to Marijuana, I have never tried it, and cannot comment. As bad off as you are, I would be afraid I would be accused of something criminal and land in jail where a person with Central Pain would go insane. Some say it helps muscle pains, so I am not going to disparage it. I think it really is for much lower level pain than you have. Your body is in bad shape, and you may not be able to do much about it, so maybe trying to modify the world around you is what you can do. Not easy, and practically speaking most of us don't have the funds, but a little stereo music, the right temperature and the right sleeping arrangements can seem really great if you have been living without them for a long time.

    Every body, however damaged, can do something. If you have some mantra where you say "I am thankful for my eyesight, I am thankful for my hearing, I am thankful for my hands which can type" that sort of thing, it may blunt some of the sense of loss. Maybe not, and maybe music is better. Gotta find some way of improving emotional tone. If you google late night humor, they type out the jokes comedians tell on TV. Can make a long night a little shorter. And of course there is chocolate.
    Last edited by dejerine; 05-06-2014 at 10:28 AM.

  5. #5
    Really sorry you are at rock bottom - Bollefen.
    I don't have any experience with MJ. Not does not work with my line of work and I suspect it would make things work. I have promised myself that as long as I have my eyesight and my hearing to listen to Bach, Beethoven, Bartok, and Barber -I should be okay. I reserve the right to change my mind about this too.
    When you are in terrible pain, it almost becomes impossible to even listen to the great composers. That is where meds come in. Just take enough. Hey if , diazepam helps - get it and use it. What a cheap effective treatment. To hell with the risks.

  6. #6
    Senior Member flying's Avatar
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    I have a theory about medical marijuana. It seems to make you more sensitive to pain for a short time, then the mental aspect part kicks in and then you feel less pain. But this is only if you are in a smaller amount of pain to begin with. If you are really hurting, then it just makes in worse, and the mental part is not enough to compensate for the increased sensitivity.

    So in short, it works pretty good if your pain is not killing you to begin with, but still pain. And if your really hurting, then it just makes it worse. I think this is why some people have great success with it, and others do not. Half pain, works great. Full pain, makes if worse.

    Just my observation, my be different for others.
    T12L1 Incomplete Still here This is the place to be 58 years old

  7. #7
    Sure works for me, before my accident I refused to take pain meds even after a operation, I'd tough it out , never take squat for pain, then this spinal injury, different story! Neuropathic Pain is the worst, I tried staying off pain meds and the wife couldn't stand seeing me reeling in pain and gave me the order! First it was gabapentin , it helped but not enough, then lyrica. This also helped but the side effects were horrible, went to doctor and told him I tried marijuana and it helped, got him to sign me up to use, started using with lyrica and eventually was able to increase the amount of weed that enabled me to wean myself of lyrica.

    It took me about 4 months building my tolerance up before I could quit the script. I don't smoke it I use a vaporizer, it's quick, no smell, none of the bad chemicals caused from smoking (combustion) This is the only relief I've had for almost 2 years, it gave me a life back.

    Will

  8. #8
    Senior Member alan's Avatar
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    I tried it in 1985, and it made my pains at the time feel worse because it heightened my perception. Today, there are strains that are supposedly better for pain relief. If Maryland ever gets medical marijuana going, I'll try one of those strains, but not by smoking it (assuming I'm not in a nuthouse.)

    Dej, I have no such mantra, and never did. Being a negative nelly (which I already was before SCI) likely hurt me. Therapy hasn't helped.

    Meanwhile, my upper back pains get worse, and make moving my arms ever harder (my back feels so hard and stiff, the scapulas stick, and I feel the bones rip through my skin.) The intensified abdominal pains make swallowing and breathing more painful. Etc., etc. Even if I could talk a neurosurgeon into delving into my neck, I apparently grow scar tissue so much (like Bo), it would quickly render any change in tethering moot.

    Even baseball season with the Orioles winning isn't helping my mood.
    Alan

    Proofread carefully to see if you any words out.

  9. #9
    I am 56 years old. Been a c5 quad for 36 years. Was a rough kid who loved the clean outdoors. I HATE smoke. There for in my rebellious years I drank. I had friends who were stoners. Once a few wanted to go with me on a fishing trip on a river where a friend had a cabin. 6 of us went. All the stoners did was sit in front of the tv smoking joint after joint but us 3 that drank, we fished and swam all weekend and even crashed another schools high school dance. I swore I'd never smoke anything.

    Now after 36 years I have changed my mind. For 30 years life was good but 6 years ago I got a sore that will not go away. It's cleared up today but Thursday I go to a doctor and it will open about .1-.3 cm. Everyday it will double. I am skinny and 0 fat on my rear. I constantly work out by pushing and pulling on the bedrails to the dismay of other members of the house. I make a lot of noise.

    Ok, fast backwards 2 years ago. One of my nieces friends had some pot that he swore would alleviate my pain and cure most of my spasms. So I gave in and took about 3 hits. I was in HEAVEN...A warm feeling came over me and I was very coherent. I could feel my fingers, my legs, and the whole shebang. Only problem is he did not know what stain it was. So I have smoked 10 joints including that one. That 1st time and 2 others were great. The other times was from a strain pushed as a pain reliever. I grew it myself and got 4 dry ounces. I gave it to a friend who was going through chemo. He loved it and wanted more. I am not hiding from the law. I live in Florida and just a few months ago coming back from a Dr's appointment I had my driver stop by a place that was perfect for mj. Couple of days ago I stopped back by a there were 3 nice thc bombs. Emailed him the gps. That stuff made me hurt all over. I am looking for that perfect strain and honing my growing skills. Very little work needed. If you can poke a hole in dirt you are good. When I find that strain I'm looking for i'll let you know. I'm looking for a night time Indica and a daytime Sativa or hybrid that does not put you in couch lock. I use a vaporizer also. I hate smoke. donnie

  10. #10
    try one ...... CP / spasms 1 MJ zero

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