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I bought some CBD oil

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

A few of the ladies here at our 55+ community here in Florida are using the CBD oil or cream for everything from sciatica, arthritis, insomnia, and shoulder pain AND, they all report it's working! So, I got the name of the place they bought theirs at and went there this afternoon. The lady behind the counter at the nutrition place I went to told me where to start to help my neuropathy. She said to start small about 45 minutes before bed to make sure I could tolerate it especially since I'm usually sensitive to medication. I'm going to try it tonight and not take the gabapentin and Nyquil. I don't think the gabapentin does a thing and I was going to stop taking it anyway. 

I will report back and let you all know if it works. I have an appointment next month with my new GP - we had to change doctors again when we switched to an insurance plan here in Florida. We plan to live here eight or nine months a year so it just made sense. I want to try this before I see him since I was going to ask him to let me try Cymbalta and Klonopin. I am hoping this works so I can sleep through the night without waking up in pain. I can handle the pain during the day but there have been times when I'm still up when my husband gets up in the morning. I'm sick of walking about like a Zombie most days!!

Love,

Eldri

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

sounds like the Gabapentin is causing those symptoms.  You may want to take to your doctor.  Side effects is drowsiness plus other stufF like headaches.   It’s why I didn’t take it because I was already having issues.   I hope you find some relief.   My mom’s friend started taking hemp gummy bears and her pain has greatly decreased.

 

hugs

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2609
Joined: Mar 2013

Eager to hear how it works for you, Eldri.  For some people it is like a miracle.  I know I'd be chewing some happy gummy bears if it helped.  

Rosesforever's picture
Rosesforever
Posts: 36
Joined: Sep 2018

 

Please be careful going off gabapentin too fast. 

I live in Ca so cannabis is legal here.  CBD oil can be great but you have to give it time. I don’t know much about it but a have few friends who are very knowledgeabl. I know the ratio of CBD to Thc is important for sleep. 

Cymbalta is an SSRI+. Klonopin is a benzodiazepine both are psychotropics but very different. It will be interesting to see what your new doc recommends. 

Im so sorry you are having so much neuropathy. It sounds terrible. I’m sending you good wishes for relief and healing. 

MAbound
Posts: 888
Joined: Jun 2016

I agree with Roses!

Gabapentin is nothing to fool around with on your own.

You're really only suppose to stop it gradually and under medical suppervision because withdrawal symptoms can be pretty nasty and even life threatening if you don't do it right.

Given how sensitive you are to medications I'd really think twice about stopping what you are on suddenly and adding something that hasn't been well studied because it's been illegal for so long.   This would be exceptionally risky for you and I strongly caution you to talk this out with your doctor first before proceding as you've stated above.

What works for others without problem may not go so right with you. You always seem to get the bad side effects. I get the desperation for sleep, but please understand how all these drugs interact with each other before you add to what you already have to deal with to your regret. 

MAbound
Posts: 888
Joined: Jun 2016

It is not uncommon to experience side effects when one stops using gabapentin. This is true of any substance that affects GABA levels in the brain. When someone wants to learn about getting off gabapentin, it is usually because they’ve developed a physical dependence on the drug. Physical dependence is distinct from psychological addiction. Physical dependence doesn’t indicate drug cravings or compulsive drug-seeking. Instead, the body is dependent on the presence of the substance to the point that stopping suddenly will cause physical symptoms known as withdrawal. Research shows that taking gabapentin even for just three weeks can trigger withdrawal as a person tries to stop taking it. Understanding how to get off gabapentin requires professional guidance because of the potential side effects.

 

The side effects of stopping gabapentin can range from mildly uncomfortable to deadly. The risks of withdrawal symptoms make it important to follow a gabapentin taper schedule as someone tries to stop using it. Symptoms of stopping gabapentin suddenly can include anxiety, agitation and irritability, restlessness and light sensitivity. More severe side effects of stopping gabapentin can include confusion, hallucinations, heart palpitations, and status epilepticus. Status epilepticus refers to a medical condition in which seizures continuously occur, and it can be deadly. The symptoms of stopping gabapentin and their severity can depend on a number of factors. Some of the factors that determine the side effects of stopping gabapentin may include the duration of medication use, the dosage used, and the potential presence of any medical conditions that could amplify side effects.

For someone interested in getting off gabapentin, the best thing to do is to follow a schedule of tapering off gabapentin. Getting off gabapentin should be done only under the advice and supervision of a physician. Even for people who aren’t abusing it, doctors will recommend weaning off gabapentin because it is the safest route to stop using this medicine. Tapering off gabapentin will include gradually taking lower doses, often over a period of weeks. Detox centers may also help people who want to learn how to stop taking gabapentin 300 mg or other doses of the drug.

While gabapentin isn’t a narcotic and isn’t considered extremely psychologically addictive, it is a drug that leads to physical dependence. For people interested getting off gabapentin, never try to do it on your own. Withdrawal from gabapentin can be life-threatening. 

takingcontrol58
Posts: 244
Joined: Jan 2016

Eldri,
You might want to consider taking the supplement Alpha Lipoic Acid. I've been taking it for nearly 4 years.
It increases the levels of glutathione in the body, the major antioxidant in our body. My integrative oncologist
who recommended the supplement said it helps heal nerve damage. It is known to reduce pain and numbness
of neuropathy. I fortunately only had some minor neuropathy in the pad of my left foot after chemo and it never got
worse and is negligible now. The brand I use is Jarrow Alpha Lipoic Sustain. I took 3 tablets, as recommended by my
doctor, even though the bottle says to take one. I now use two tablets.  Antioxidants fight the free radicals in our
body that damage cells and cause aging and many diseases.

Takingcontrol58

 

 

barnyardgal
Posts: 227
Joined: Oct 2017

My doctor recommended alpha lipoic acid and l-glutamine to take during chemo, as well as acupuncture. I ended up on a chemo regime different than Taxol, so no neuropathy, but she swore by the above.

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Thank you for posting this, Eldri. You have a whole bunch of people who're curious and will log in tomorrow morning to see how you slept. You're a sleep study of one, and we're your observers HA. Best of luck and I hope it works as well as - or even better than - the Nyquil.

jan9wils's picture
jan9wils
Posts: 73
Joined: Mar 2017

I had no idea gabapentin withdrawl could occur. I started taking it 6 months ago. It's 100mg to be taken 3x a day and I forgot to take the midday dose most of the time. So two weeks ago I stopped taking it altogether and just take alpha lipoic acid. Honestly, I never noticed an improvement with gabapentin but that's probably because I wasn't taking enough. I did have improvement from alpha lipoic acid, however. I take 250mg 2x a day and I no longer have the burning shooting pains in my feet and hands. I still have some numbing and tingling which I hope lessens over time. 

I sure do appreciate everyone on this discussion board. I've learned so much and have seen questions answered that I didn't even know to ask!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2609
Joined: Mar 2013

"Ma", thank you.  Not having been prescribed this drug, you point out the need to research what we are given and how to take it.

https://www.webmd.com/drugs/2/drug-14208-8217/gabapentin-oral/gabapentin-oral/details

 

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

I hope you listened to MAbound. I am a retired RN and gabapentin should always be tapered off. 

Donna Faye's picture
Donna Faye
Posts: 267
Joined: Jan 2017

Had my annual physical Friday and my major complaint is my neuropathy in my feet. My primary immediately wrote a prescription for gabapentin. I researched it after I got home and was dubious of it. Then this morning is this wonderful information from so many of you. I don't have problems sleeping - it is getting comfortable with the tingling when I get in the bed. After reading these comments, I am not getting that prescription.  I love my primary doctor but think he was too eager to get me comfortable and not thinking how it might impact me. I, too, will see how ELZ does with the oil.

takingcontrol58
Posts: 244
Joined: Jan 2016

Eldri,

I just remembered that you are on metformin. Metformin lowers levels of B12 so
you have to continue to supplement to keep your levels in the proper range.

Vitamin B12 is needed for neurological function.  I test my blood levels of
B12 regularly, just as I test Vitamin D levels regularly. When I try to take less
of the Vitamin B12 supplement, I find that my levels drop alot from the metformin.

You need to get your blood levels to the right range then maintain those levels.

This could be another cause of your neuropathy.

Takingcontrol58

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

This is the third time I have been on gabapentin and each time I've gone off it, nobody (MD, MA and NP) ever told me to taper off of it - what the heck??? The first time I was prescribed it was after my first chemo when my hands and feet started to tingle. I took it for about three months or so but the neuropathy just got worse. Then in 2017 my GP wanted me to try it again but told me to take it only when I needed it. I took two to three a day but quit after six months - again, cold turkey. In February the MD I saw wanted to start it again but take three pills at bedtime to see if it helped. Nobody said a word about weaning myself off of it slowly - YEESH! But I just read that some people have no symptoms from stopping it. I have not noticed any improvement and think the neuropathy, if anything, has gotten worse while I've been on it. The only thing I take that I notice big time when I don't take it is the Nyquil.

I do take B12, C, D3, magnesium, potassium and a multiple vitamin without iron based on blood testing. Those are in addition to my prescription meds. 

I used the CBD oil under my tongue last night but only used six drops. The woman that I bought it from said to start slowly and work my way up. She said it could take a while before I would feel any improvement. I knew it was going to be a bad night because my feet were already in pain by late afternoon. I iced them but as soon as I took the ice off, the pain came back. I was very tempted to just take an oxycodone but I'm really trying to get off that. 

Tonight I'm going to take the CBD oil, one gabapentin and the Nyquil to see what happens. I will report back later in the week.

Love,

Eldri

MAbound
Posts: 888
Joined: Jun 2016

It's like CQs "Frustrated" thread. What we get from our doctors in the form of instruction when we get new diagnosis or meds is often token at best, like being given a pamplet or two, if we're lucky, when first diagnosed with diabetes. And then they have the nerve to charge our insurance for said "instruction"! When it comes to meds you seem to either have the worst or the best of luck, Eldri, and I'm so glad you were ok when you've stopped the gabapentin without issue. I was offered it, too, during chemo and said "No thanks, I'll try the other options first" after reading about it, so that's why I said "Whoa, wait a minute!" for you. I feel so bad for what you are going through and just can't bear the thought of even more going wrong for you. I'm stunned that your doctors have been so cavalier treating you with it. Finding out about it after a bad effect is not the way to do it!

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Wow very interesting . I only took gabepentin very briefly and it did nothing for me so i stopped. I didn’t know about tapering off which I didn’t but didn’t have any side effects. I’m thinking I probably had a very low dose.

MAbound
Posts: 888
Joined: Jun 2016

Thank you everyone for the positive comments. I'm getting to the point where I feel a bit gun shy about making such posts for fear of being irritating, but I can't seem to help myself. 

Not understanding what I'm putting into my body is one of my bugaboos and I have to know all the good and the bad before I can bring myself to add something, especially anything OTC. We're all such good researchers, it kind of boggles my mind how easy it is to throw caution to the wind and give something a try because others are doing it and we're not getting the help or instruction we need from our doctors.

Remember how we all say we are a statistic of one? What works without problems for others may not work so well for everyone given how different our circumstances are from each other. You just can't be too careful.

I really like TC58's advice because I know she's another one who does her homework. When it comes to the hormone driven version of uterine cancer, knowing your body and healing it makes a lot of sense and can have a huge impact on just feeling better, but you have to be smart about anything you take in concentrated form. It's best to get what you need from food, but that's not always possible so we have to turn to supplements in spite of the lack of trust we can put in all that's out there because of the lack of oversight. The information we need is out there, though, we just have to take the time to hunt it down. 

I'll get off of my soap box now and leave you with a link to info on alpha lipoic acid that addresses potential side effects and drug interactions that need to be taken into consideration before adding this to your regime. Thanks all for your patience with me when I get like this!

https://www.webmd.com/vitamins/ai/ingredientmono-767/alpha-lipoic-acid

 

BluebirdOne's picture
BluebirdOne
Posts: 204
Joined: Jul 2018

but all of us need the collective knowledge of everyone that has gone through this. Our providers can't give us all of the information that we need, there is not enough time. That is what is so great about this site is that we collectively look out for each other, we collectively contribute our experiences, and our experiences are collectively available to all comers. The only way to advocate for ourselves is to educate ourselves and everyone's input is a valuable piece of the puzzle. So, MAbound, keep contributing to our vast store of knowledge as you are helping someone now or in the future.  

xxoo

Denise 

 

 

 

 

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2609
Joined: Mar 2013

Ma, I'll always be interested in what you have to say.  None of us are smarter than the others, we all collectively get us down the road in this education.  Unless it is absolutely needed, like chemo, maybe we can all learn a lesson to stop, do our homework, and then say if we are interested in taking a medication.

I had a benign lump removed from my breast is 2009.  The surgeon wanted me to take tamoxifen.  I said no.  Turns out it can cause uterine cancer and I didn't need any help with that.  PLUS she didn't do any kind of testing to determine if it would benefit me. 

There is clinical trials and then there are guinea pigs.  A good reminder to be our own advocates.

MAbound
Posts: 888
Joined: Jun 2016

"We all collectively get us down the road". That is so true!

CheeseQueen57's picture
CheeseQueen57
Posts: 820
Joined: Feb 2016

I went to my pain mgt doc a couple of years ago with right sided groin pain. Right side is where all my action is. It was really inte with my QOL. She identified it was radiating pain from my lumbar fx (of course from radiation) and prescribed Gabapentin. I take 100mg pm and am and solved the problem. I was getting bull like maybe it’s the disease or scar tissue. I’m fine with the gabapentin for now. 

On another note, all my cancer doctors saw my A1C gradually rising over the past year and did nothing. They know the Megace causes this but never once addressed my diabetes. If I have the potential to live a few more years, I sure don’t want diabetes complications. Fortunately I was acquainted with an excellent endocrinologist through my professional life and I begged him to see me as a patient NOW!   I just can’t believe how we have to take control. And don’t forget I have permanent eye damage because I wasn’t paying attention (gee, I’d just had a stroke) and let them prescribe me  Amiaderon.  It wasn’t until one of my great dietitian friends called me screaming, “Get off that drug!” Did I know it was potentially the cause of my optic neuropathy. Stay aware my pretties!

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

It is a good idea to chat with her/him whenever you get a new script, especially if you are on multiple medications. 

MAbound, don't stop speaking up. I expressed my concern when Eldri first had issues with her port and her doctor didn't seem concerned. In light with what happened, I've always wished I had come on stronger. 

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

I am so glad I have all of you!! Because of TakeControl 58, I have Metformin. If I hadn't pushed for that, who knows, I could be dead! Speak up!! In some cases, WE are all WE have since our doctors have failed us.  

I took just two gabapentin last night since I'm weaning off them. But, OMG, I slept wonderfully!! I think the CBD oil is starting to work!!

Love,

Eldri

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

And, if that's all the CBD oil gives me is a good night's sleep, I'd be overjoyed!!

Love,

Eldri

BluebirdOne's picture
BluebirdOne
Posts: 204
Joined: Jul 2018

for several years and it works like a charm. Never used CBD but I have heard good things about it. 

jan9wils's picture
jan9wils
Posts: 73
Joined: Mar 2017

MA Bound keep talking, girl! You're the one who got me thinking about genomic testing when I was crying about another recurrence. And guess what? I asked my Dr about it when he ordered my biopsy and he said, by all means, yes, that is a very good idea! Because of you I will have more options. So keep chatting please.

The Storm
Posts: 20
Joined: Jul 2018

I was wondering how your CBD oil is working? I am currently taking Amytriptylline and Ativan to sleep. Now to be honest I started on the Ativan long before I had neuropathy. I told my oncologist and my general practioner that I would not take Neurontin. Im a nurse I'm familiar with the the drug, they both said that it really doesn't work anyway. Amytriptylline on the other hand kicked in nearly right away with a very low dose. I am taking B6, B7, B12, Tumeric and an Omega 3 fish oil, all are supposed to help the nerve covering heal. We'll see if it works.

My chiro had me try a CBD stick for some joint inflammation and pain, it really helps. Please let us know how the oil is doing.      

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

It's been two weeks on the CBD oil and it's still working. It hasn't taken the discomfort of the neuropathy away but it has lessened the pain considerably. On a scale of 1 to 10, there were some nights I was an 8. Now, most nights around a 3. That means I can fall asleep and sleep through the night. I'm totally off the gabapentin and am slowly weaning myself off the Nyquil although I will probably still take diphenhydramine or Tylenol PM. That's what I took BC (Before Cancer) to sleep when I needed it.

I was hoping the CBD oil would also help with my chronic diarrhea but, so far, that hasn't happened. I take such a small dose of CBD oil so maybe, if I increased it, I would get some relief. But, for now, I'm concentrating on the neuropathy. 

I'm also going to try and go to bed earlier. I have gotten accustomed to staying up so late because of the neuropathy that sometimes it's after 2:00 a.m. Then I'll sleep until ten or eleven. I figured I'd try to adjust slowly to see if I can move bedtime back to around 11:30 or so. 

We're heading back to Wisconsin and the central time zone in June. That should help with the bedtime adjustment. My husband has a baseball 50th reunion back in Wisconsin. The guys from that team plan to get together on June 29th. I have an all-class class reunion on August 10th. Between those dates, we want to see the kids and grandkids. We plan to have a family reunion for my husband's family too. 

I don't know how hard it will be to buy CBD oil in Wisconsin so I'm going to stock up before I go. Wisconsin is not very forward thinking about things like that. Medical marijuana is still illegal there. So.....if you get an emergency SOS from me, I might be asking you to contribute to my GoFundMe page to get me out of the hoosegow!! I do NOT look good in horizontal stripes! LOL

Love,

Eldri

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

I'll help bail you out. Just holler. 

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

LOL, I knew I could count on you, Connie!!

Love,

Eldri

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Eldri, it’s great to hear the CBD oil is working! One of my cancer friends here in Illinois takes it too. She had no trouble getting it too. Welcome back to the Midwest! Up and down on the weather, but it’s going to be better soon I hope.

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

Two grandmas were arrested with CBD oil?

Primavera's picture
Primavera
Posts: 75
Joined: Mar 2019

I thought you were joking, and went to google it, and then it showed up on TV.

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

I hadn't seen that but I did watch on TV a grandma being thrown out of Disney World for having it. The laws are so wacky and confusing. But let them come get me!! LOL I'm not giving up my CBD oil. It works better than the Oxycodone!!  

Love,

Eldri

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