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Cannabis oil / Chronic Pain (teen)


fourcatmom
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I could use some advice regarding cannabis oil for my 15 year old daughter who has been suffering with chronic pain for over two years now. Many people on the board have followed our journey from her concussions to her diagnosis of a CSF leak and Chiari. Her surgery for Chiari was 6 weeks ago. I didn't think I would be seeking advice about this topic, ever let along 6 weeks post op. This is a tough one for me. I don't want to do this. I don't want to be here but we are and I need to help her and I am trying to learn as much as I can to make the best decisions for her to heal and live her life. I am not in a place where judgement will help me, I just need facts and support to make these decisions.

 

I do see improvements from her surgery, cognitively there is a huge difference. I have no regrets but it has not fixed everything. She is still having intense head pain and is still more prone to wanting to lie down. They are trying to get her to the 3 month post op mark before they make any more decisions to see if things improve. She is obviously still having low intracranial pressure and is on some meds that hep but not enough. In my opinion she is either still leaking CSF, or she has a low CSF volume issue that will resolve over time, or she is having some occipital neuralgia, at least those are my thoughts.

 

Her pain doctor suggested cannabis oil a few weeks ago and I shot him down pretty quick. I didn't think we were there. They took her off all the narcotics from surgery and she is just really struggling as nothing touches this head pain/pressure especially at night. She often doesn't get relief until around 2am and then she is finally able to sleep.

 

We have tried many, many things. The NS is not quite ready to try ON injections as she is still inflamed and healing from surgery. They just added Celebrex and Lyrica. The warnings about Lyrica made me re-think the cannabis oil. So after some back and forth discussion with her pain doctor and my daughter I decided to get a prescription. Now that I have it, I feel very overwhelmed again and kind of sick to my stomach honestly. The celebrex hasn't made any difference today and none of her other meds really do either, except florinef to help with her pressure but again it's just not enough.

 

In his original email he said it would be cannabis extract containing 1:1 CBD to THC was the recommendation. The prescription says 20:1 cannabis tincture. I don't even know enough this to know if those are the same thing. So, I am reading and asking questions.

 

I appreciate any and all judgement free advice. Thanks!

Edited by fourcatmom
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Go to a medical marijuana shop and talk with them. They're usually very helpful and knowledgeable. We've explored CBD oil for chronic pain and seizures. It's lower risk than many other prescription meds. Totally worth exploring (though I really understand and relate to how far outside your comfort zone this is).

 

I'm sorry the surgery didn't solve everything. This has been such a long and hard journey for you all.

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no info but :grouphug:  :grouphug:

 

I have an 18yo daughter who has POTS and likely Ehler Danlos. Different issues, but similar treatments to what you are looking at.  DD has lived in chronic pain for years.  She currently takes Lyrica and diclofenac (NSAID).  She used flourinef to increase salt/water/blood volume, but it wasn't enough.   She is now getting IV saline twice weekly instead of the flourinef.  It helps her quite a bit, but it is not solving her problems. Our next step is Providil/modafinil (stimulant) and a port for her saline (so she doesn't have to spend 6 hours a week at the hospital).  Her ADD meds give her migraines with the Lyrica so we are cautiously optimistic with the modafinil.

 

DD is stable (not out of pain, but functioning).  I briefly and I truly mean briefly, investigated cannabis for her.  But the early things I found showed that it affected brain development and stem cells.  That could be incorrect information, I never verified it.  DD is ADHD, Dyslexic and very bright.  I couldn't do anything that could possibly be more detrimental to her brain considering what she already deals with. She is planning a science major, likely engineering or medical. You might try searching those two things in combination with cannabis and see what  current information is available. 

Edited by Tap
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Maybe they decided to start her off with a higher cbd ratio to ease her into how it will make her feel? The higher the the content, the greater the high, so it may be weird at first?

 

I think that your dd is the very reason medical marijuana should be utilized. I hope it helps her, and just :grouphug: :grouphug:

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no info but :grouphug:  :grouphug:

 

I have an 18yo daughter who has POTS and likely Ehler Danlos. Different issues, but similar treatments to what you are looking at.  DD has lived in chronic pain for years.  She currently takes Lyrica and diclofenac (NSAID).  She used flourinef to increase salt/water/blood volume, but it wasn't enough.   She is now getting IV saline twice weekly instead of the flourinef.  It helps her quite a bit, but it is not solving her problems. Our next step is Providil/modafinil (stimulant) and a port for her saline (so she doesn't have to spend 6 hours a week at the hospital).  Her ADD meds give her migraines with the Lyrica so we are cautiously optimistic with the modafinil.

 

DD is stable (not out of pain, but functioning).  I briefly and I truly mean briefly, investigated cannabis for her.  But the early things I found showed that it affected brain development and stem cells.  That could be incorrect information, I never verified it.  DD is ADHD, Dyslexic and very bright.  I couldn't do anything that could possibly be more detrimental to her brain considering what she already deals with. She is planning a science major, likely engineering or medical. You might try searching those two things in combination with cannabis and see what  current information is available. 

 

Thank you. We assume she has EDS as well but they don't think POTS but it has been a topic of conversation. Right now her florinef is not for the blood pressure but for brain pressure. I appreciate the comments about the cognitive side of it. That is huge for me. She was diagnosed with a mild neurocognitive disorder just before surgery so doing anything that would potentially erase or hinder any improvements the surgery had on her cognitively would be a huge red flag for me. I have started her on the lyrica yet but I am hoping this combo works and might solve things. My gut says there are more procedures coming, hoping it's not spinal surgery for a leak but we just have to wait it about before going there.

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Maybe they decided to start her off with a higher cbd ratio to ease her into how it will make her feel? The higher the the content, the greater the high, so it may be weird at first?

 

I think that your dd is the very reason medical marijuana should be utilized. I hope it helps her, and just :grouphug: :grouphug:

 

 I was told this prescription would not have any  psychoactive effect and that there would be no "high" And, thank you.

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My dd has had a headache for over 7 years now that has never gone away, not even for one minute.  She has tried everything we could think of, including meeting with several top neuro docs in the country.  We finally decided to give "MM" a try.  (Medical marijuana.)  She actually moved to California and lived with a good friend of mine for a year in order to try various types and strengths.  It did help her sleep better and relive some tension, but didn't touch her pain.  But if it had helped her pain, I would have had no problem with her using it at all.  At this point, I would support almost anything that would help her pain.  It's worth a shot.  I can't tell you about the various strengths, etc. though.  A "MM" doctor should be able to help you with that.

 

ETA:  It was actually her 88-year-old, straight-laced grandma (my mother) who suggested she give it a try!  :)

 

 

Edited by J-rap
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It seems like something you could try and evaluate - if it helps, great! If it doesn't help, then no harm done, right? If this is something that really makes a difference for her,  you will be so glad you found it. I don't see what you have to lose by trying.

 

I get the hesitation, though. I have been having an anxiety flare for a couple of months and it is getting so tiring. I have wondered if cannabis oil might help. MJ is legal for recreational use in my state, and there is a shop about two minutes from my home. I am even acquainted with the owner. I am too chicken to check it out, though, because it is something I have zero experience with and I'm afraid of sounding like such a weirdo square. LOL. I have no desire to get high.

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Support from here. Zero judgment. It's taken in very small amounts. She's not going to be getting high. Your doctor is recommending it.

 

I''m not surprised the Celebrex didn't help. That was my experience with it, too, and my issue didn't even come close to your daughters.

 

You're in my thoughts.

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Some people get great results with CBD oil, some don't. The interactions tend to be low and so are the side effects. I don't like marijuana as a rule, but that does have lots of positive stories correlating with it, especially among children. I'd give it a go, given the very minimal downsides. If it works that would be amazing and awesome for her.

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I totally understand your reservations.

I am most certainly not pro cannabis in the usual sense but for pain relief I would try it.

The oil is derived differently and usually does not get people high in the same way as smoking marijuana does. CBD is one of many cannabinoid compounds. THC contains more of the psychoactive properties.

People do become more relaxed and some who observe this equate it with a "high," however it is not the same.

 

It comes down to receptors and molecules. The THC molecule fits the CB1 receptor and causes a psychoactive reaction. The CBD does not fit and therefore rarely causes any kind of high.

 

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Typing with one hand--forgive my brevity. Nothing but support from me. I think if I were in your position I would give it a go. To me it is no different than using any other doctor-prescribed medicine.

 

No idea about your religious beliefs but as a Christian 1 Timothy 5:23 comes to mind: "No longer drink only water, but use a little wine for your stomach’s sake and your frequent infirmities."

 

Huge  :grouphug:  :grouphug:  :grouphug: to you and your daughter.

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I personally would try Lyrica first.  It's been a miracle drug for my daughter.  She's actually out of bed.  She's still in pain because there are other issues the Lyrica doesn't address, but it's brought it to a manageable level.  If the Lyrica didn't work, I wouldn't hesitate to move on to cannabis oil (if it was available here, it's not).

 

A friend of mine has a daughter with Chiari and the first surgery did not fix everything.  About 4 months later she had a second surgery to place a shunt and that has made all the difference.

 

(My daughter is 17 and has POTS, fibromyalgia, Ehlers-Danlos, Celiac, Insomnia, Chronic Migraines, Craniocervical Instability, and 4 herniated discs in her cervical spine almost definitely secondary to the EDS.  She has a youtube channel talking about invisible illness if you want to share it with your daughter.  https://www.youtube.com/channel/UCZnC2KryO1Euo5DD0sK8r3g )

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I would absolutely go for it.  Currently looking into it for our Ehlers Danlos issues.  Low THC shouldn't be a problem cognitively from what I am learning.

I am sorry she gets no relief.  Our insurance company wouldn't approve Lyrica and youngest doesn't want to be on the pain meds they offered her.

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DH and I watched a documentary about cannabis oil and it's medicinal uses. There was at least one segment that focused on use in kids. I wish I could remember what it was called. I was amazed at the results - there were many children it was able to help and with fewer side effects than pharmaceutical pain meds. 

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What are your biggest concerns? Are you worried what people will think? Would you be as concerned if it wasn't derived from a plant that was illegal to dry and smoke? I honestly don't get people who are so concerned about the illegal aspects--it is not the same thing as smoking a joint. if it was a new pain drug, I'll bet many would be willing to try it. If you have questions, call the place where you got it and ask. They are used to people having questions.

 

For your daughter's sake, give it a go! I hope it's helpful for her. She's been through far too much. 

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We are considering cannabis oil for our son who has intractable epilepsy. We live in a state where only very low concentrations of THC are allowed. I have come to the conclusion that my son is already on "drugs" and most of them have  side effects. If the cannabis oil has low side effects and can help with ds's appetite I am interested in giving it a try. 

 

I hope you find something that will help your daughter. It is so hard watching a child suffer.

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There is a woman in my community who makes a topical pain cream with cannabis oil and she has a waiting list for her product. I am considering getting on the waiting list for my MIL who suffers from a rare circulatory disorder and with the ACA possibly being changed she may need to do something different for pain. I have no judgement at all. Many people here have a lot of success with it. 

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Let me get this straight . . .

 

Your kid has been in horrible, terrible, life altering pain. Her health has been in severe jeopardy for a long time now. . .

 

She's (understandably) been on God-knows-which narcotics, many of which are prone to abuse and/or addiction. 

 

Her doctor recommends cannabis oil. 

 

You hesitate?

 

Please, DO IT!

 

For goodness sake, of course you should try it. Whichever formulations he prescribes and/or you can get your hands on at a dispensary, try them. I doubt it matters all that much which formulation, and, in your shoes, I'd just try one, then another, then another, until I found which one(s) worked best for my kid.

 

Cannabis is a very safe and very long used plant. It's a ZILLION times safer than narcotics and the vast majority of even OTC medications, let alone narcotics. It's very safe. It's not addictive. You can't overdose. What's not to love?

 

(Take too many tylenol, and say good bye to your liver . . . Use too much cannabis, and, um, you might fall asleep or eat too many cheetos.) (Caveat: presumably, with edibles and extracts, it'd be easier to over do it vs using it in its traditional state by smoking cannabis. I certainly wouldn't advise eating 100 cannabis cookies, etc. )

 

I'm so frustrated that our nation's deranged drug policies have caused you (and presumably many other loving, wise people) to hesitate from using this potent and very safe medicinal plant that could well be life-changing for your kid. It's not YOUR fault, it's our crazy drug-company/government/drug-cartel crazy system that has warped our views of this plant. 

 

 

 

 

Edited by StephanieZ
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Do some more reading.  I agree w/Liz that which strength you want may come down to receptors and such.  I don't know anything about CBD vs THC for pain, but there are oils available that are all CBD, with virtually no THC (presumably only at trace levels), so no high possible.  I vaguely recall reading that the high CBD/low THC is intentionally manufactured from a particular version, and part, of the plant.

There may be more info on manufacturer websites, see e.g., https://www.bluebird-botanicals.com/hemp-cbd-faq/

 

Since your doc recommended it, I wouldn't hesitate to give it a try.  I don't think CBD oil is anywhere in the same ballpark as MM.

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thank you for all the input and advice. I have the prescription and will be going down to talk with them.

 

And, I do research everything the doctor recommends, prescription, treatment, procedure, surgery, it doesn't matter what it is. Initially, I think my reaction was maybe thinking of it as "end of life" option (I know its not but that's where my mind went) and I am past that and dealing with facts and what is best for her.

 

 

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My Neurologist recently recommended medical marijuana to me. I almost fell out of my seat and was totally against the idea. She shared stories of her Parkinson's patients finally being able to walk again -tremor free and the benefits it has for fibro pain, migraines and muscle spasms. I've been with this Neuro for years and this is the first time she mentioned mm. She believes I will be able to significantly reduce my lengthy med list thus also getting rid of the meds side effects. Lyrica caused me major memory/ word loss so that meds off the table for me.

 

I've already met once with the dr that will help me get my medical card. I will say that a LOT of my concerns have been addressed and I feel comfortable at least trying mm. If at any point I decide its not for me I can walk away.

 

First, the varieties are many and mm is created differently then regular marijuana. There are strains that contain no thc and high cbd. The prescribing dr will recommend strains that will benefit your child's symptoms and not get them high. The other thing I've learned is that mm can be vaped, used in edibles and topical creams.

 

My husband asked me if mm came in a pill form and my dr recommended it- would I try it? My answer was yes. He's really stressing to me that its no different then trying any other drug prescribed by my dr. I'm working on reframing my thoughts surrounding mm. Most would look at my medication list and probably assume wrong things about me. The short back story is my current list is so much shorter then even a year ago! Its a tricky thing to walk the line between medicating me just enough to keep me able to even get out of bed but not so much that I feel or behave incapacitated in any way. Managing chronic pain is hard. My point is you have to look at the whole journey your dd has been on. I'm working on not caring what others may think about me trying this option. Not that I'm planning to shout it from the rooftops or anything but- there is a stigma. This is my life, my journey. If this can be a more natural key to helping my health issues thus allowing me a healthier, happier and more fulfilled life, its at least worth trying.

 

This has been a hard avenue for me to explore and I hesitated replying to this....but perhaps the info will be helpful.

 

I see the mm doctor again in the next 2 weeks. If you have additional questions or concerns, feel free to pm me.

 

Melissa

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My husband deals with chronic pain and only after numerous physicians suggested he tried it, did it even cross our minds. He has been using it for a couple years now and  for him, the tinctures work way better (and cost waaaay more) than the other forms of cannabis oil. We live in a state that recently made marijuana legal recreationally, and we now are unable to find the right tinctures, party due to the new regs and partly due to the profit margins, but that is another issue.

 

Anyway, for him the tincture works better than morphine for pain. He does use the less expensive cannabis oil mixed with lotion and some essential oils (rosemary and  mint, mostly to combat the cannabis odor) and uses it like lotion over his most painful areas and that seems to help quite a bit, but not as much as taking it orally. I must warn you, it tastes and smells awful, so you might want to buy gelatin capsules, usually in the health food store, to put the oil/tincture into that way you don't taste it. 

 

I was never a pro-pot person, but I have seen that medical cannabis can have a positive impact. It has not been a miraculous cure for him, but it does help more than anything else he has tried, and hasn't really had negative side effects. We have a family friend with Parkinson's and she also found the high CBDs helpful, but can't afford to continue use. 

 

In our experience, the shops are a mixed bag with advice. A lot of the owners seem to just be stoners who now can make a legal living, so they don't necessarily understand you don't want the mind altering affects, just the pain reduction. It seems like you pretty much have to experiment with dosage and what percentages work for you, and that can be costly and frustrating.

 

 If it were my child, I would try high CBDs. I personally don't think it has nearly the side effects of most major prescription pain meds. 

 

We have pretty much kept it to ourselves that my husband uses medical marijuana because there is so much negativity surrounding it. So just be prepared for that aspect if you should choose to try it. Even though it's helped my husband, even close family has been pretty rude about it. 

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Thank you again for the additional stories. I am there, I am ready and open to trying it but she has been in and out of the ER and I haven't had a chance to go get it and talk to them. I was already headed in that direction and now with the most recent ER visits I know it's the right choice. She has been having some intense crazy leg pain/spasm/cramps/tingling that has been going on all week and lasting for hours. Saturday morning (in the ER) it went on for 6.5 hours straight. Nothing they gave her would stop it and nothing was putting her to sleep which is what they were hoping for. She  was completely exhausted. She says it feels like spiders inside her legs. They started at 2:30 am while we were in the car (driving home from 1st ER, long story) and continued until 9am (different ER) when they finally injected her with haldol. She has now been asleep for 27.5 hours with the exception of about an hour around 1:30 am this morning when she got up and ate. I have been waking her up to talk to her and she is ok, just very drowsy from all the meds. Nothing they gave her would make these movements she was having stop. They had to put seizure pads all around the pad because she was thrashing around so much because she was so uncomfortable. She was having them in one arm too. Stanford said they thought they were parathesia and/or neuropathy and started her on gabapentin. The second ER said it was dystonic movements or a dystonic reaction. She eneded up getting an injection of benadryl, an injection of toradol and oral ativan and nothing worked until they gave her the haldol. By then she was exhausted. This only happens at night and usually she can do things to make them stop, like soak in the bath or move them around. We always thought it was like restless leg but they have lasted up to 4 hours sometimes when they start but prior to this week were only happening maybe once a month or so. 6.5 hours was the longest and nothing was helping. Now with her being in her arm too, it's changing. Really thinking it's a nerve thing. I want her off these crazy meds that are either giving her these issues and/or making her sleep for days on end. So done. So tired. I went over 24 hours with no sleep. 6 hours driving to one ER, 7  hours 1st ER (where she had surgery) and 5 hours at the local ER.

Edited by fourcatmom
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I would absolutely give it a go. If you were willing to give her the narcotics post-surgery, it's not inconsistent to also give cannabis oil a try. They are both tools which have a place in modern medicine.

 

Many of the drugs considered "official pharmaceuticals" come from plants: aspirin, quinine (malaria), codeine (pain relief), taxominofen (cancer), etc. I have a few friends who all work for the pharmaceutical industry and there's a lot of research into isolating the active compounds in plants. Simply because it comes in a pill form doesn't mean it's not of natural origin. Cannabis oil is the same way.

 

I'm sorry you're dealing with this. Whether you give her the cannabis oil right away or wait, if I were in your position I would want to say I had explored all options and found the most helpful medications because my 15 yo was depending on me to make the decisions, whatever those turn out to be.

 

:grouphug:  :grouphug:

Edited by idnib
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  • 3 months later...

Just an FYI:

 

Cannabis IS psychotropic (causes your perception of reality to change). And you need a special Medical Marijuana Card to get it "legally."

Cannabinoid oil (cbd oil) is NOT psychotropic and you do not need an MMJ card to get it. there are some studies covering this topic on PubMed,

if you're interested. 

 

 

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