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  • #61
    Re: CBD saved me (hemp or marijuana work!)

    Thank you for your story! I was diagnosed with Interstitial Cystitis (IC) in 1995. The latest treatment I had was Botox injections in my bladder wall. The procedure was painful, and I go no relief. I am really frustrated because the treatment options available today have not changed much since 1995. I started a blog to share my story, and hopefully lend support to others struggling with IC - https://treatinginterstitialcystitis.wordpress.com/ - I have been reading about CBD oil, and how this is helping with IC pain. Do you know what my readers (and I) would need to look for when purchasing CBD oil. You said that CBD oils were not all created equal so what should we look for. Also, please feel free to visit and/or follow my blog and share your experience with my readers. We are always trying to find some natural product, drug and/or treatment to alleviate symptoms.

    Comment


    • #62
      Re: CBD saved me (hemp or marijuana work!)

      I am new to CBD and thought I ought to share some of my discoveries, in case it saves anyone time.

      Consumer Labs has a lot of good information on CBD. They also rate which ones contain the most benefit vs. cost.

      Taking oils orally seems to have the best bioavailability (vs. vaping or other methods).

      Interesting part to note from Consumer Labs report: "Some products contain very small concentrations of CBD — similar to what is normally found in hemp oil (about 0.0025% CBD) while others contain very large concentrations (25% to 35% CBD) yielding doses similar to those used in clinical trials (typically 200 mg or more per day). Many of the tested products did not contain the levels of CBD they claimed. The FDA cautions that 'Consumers should beware purchasing and using any such products.' The reason why hemp oils would not be expected to contain much CBD is that hemp oil is typically made from hemp seeds, which contain little CBD (although some CBD may contaminate the surface of the seeds). In fact, ConsumerLab.com has tested hempseed oils as part of its review of seed oil supplements (sources of omega-3 and omega-6 fatty acids) and found those products to contain well under 1 mg of CBD per serving."

      A lot of the stuff found on Amazon is low-concentration/quality and not so good:

      "Standard hemp oil, which can be found very cheaply at a grocery store, is a much different product than full spectrum hemp extracts (not from seed). Standard hemp oil is produced by cold pressing the seeds, whereas hemp*extract is a full plant extraction with many components not typically found in the seeds. Hemp seed oil is considered to be a great nutritive food, but it doesn’t have the naturally occurring terpenes, cannabinoids and other components that quality extracts have."

      Like pretty much all medications, cheap formulas may also contain preservatives or other bladder-unfriendly things, so if you've not had good luck with a certain brand, don't give up, you might just need a different brand/formula.

      Two of the higher quality brands that Consumer Reports and Consumer Labs like are Charlotte's Web and Bluebird Botanicals; I have personally been taking the former with good results. CW was originally formulated to help children with seizures. They are not legally allowed to say it helps with anything in particular, so if you call and ask for specifics you might not get any answers.

      I have found that the suggested doses are a little high for me. The standard dose is something like 20-22mg a day, which was making me VERY tired. 5-10mg seems to be a better spot, especially if you are very sensitive to substances (as a lot of us with IC are). So if you have tried CBD and are now extremely fatigued, take a break for 24 hours and then lower the dose.

      I personally don't know if CBD helps with pelvic floor problems. Possibly? For me, it has been more helpful calming down the hormone flares I get, which are much harder to control--those feel like all my nerves everywhere are angry. It has also has been tremendously helpful with general anxiety. Apparently I'm a tightly wound ball of nerves all the time, and I kind of knew that, but I just never realized how *much* because it was my constant. This became pretty obvious when CBD turned everything down a notch. (And it doesn't make me irritable or depressed like benzos do!).

      My bladder hates THC. For some reason it seems to regard that as a stimulant, and this is probably why my previous experiments with CBD were a fail, because a lot of CBD formulas have some THC in them. If you're not having good results, this may be something to look into--finding a pure CBD with NO THC in it. There are even ultra-pure ones called CBD Isolate (though pure cannabidiol is not necessarily better than regular CBD; regular CBD has lots of other beneficial compounds).

      Europe: Bluebird is Colorado-based, but has a location in London.

      Allergies: it's possible to be allergic to anything hemp-based, though it's pretty rare. But should you be allergic to things that contain the same pollen protein as apples, carrots, and thin skin fruits with a pit...your body may not like it.

      Hope this helps!
      Last edited by Pillowfight; 11-12-2018, 11:15 AM. Reason: Removed link to sales site which requires personal informatio before seeing information.
      Diagnosed with IC in 2005, PFD in 2016. My sister has had IC for 21 years and our mother over 30. 66 years of bladder fun combined!

      Comment


      • #63
        Re: CBD saved me (hemp or marijuana work!)

        I just started using a lotion containing CBD --- it's a topical creamy lotion that smells like lemons --- and by massaging a tiny amount on my neck muscles three times daily, it's really helping with my chronic stiff neck.

        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        Have you checked the ICN Shop?
        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

        Patient Help: http://www.ic-network.com/patientlinks.html

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
        [3MG]

        Anyone who says something is foolproof hasn't met a determined fool

        Comment


        • #64
          Re: CBD saved me (hemp or marijuana work!)

          Originally posted by ICNDonna View Post
          I just started using a lotion containing CBD --- it's a topical creamy lotion that smells like lemons --- and by massaging a tiny amount on my neck muscles three times daily, it's really helping with my chronic stiff neck.

          Donna
          What brand Donna. My arthritic neck always hurts at night.

          Comment


          • #65
            Re: CBD saved me (hemp or marijuana work!)

            Originally posted by Ginaandmybladde View Post
            About 2 years ago, I developed IC from a devastating and severe bladder infection. I was diagnosed after about 6-9 months via cystoscopy. I tried aloe, glucosamine, quercetin, d-mannose, Cystoprotek, hydroxyzine, Myrbetriq, accupucture, physical therapy, long term antibiotics, instillations... THOUSANDS of dollars. Most of it seemed like a bandaid on a gushing wound. There was little/limited relief, except during the last few months of my antibiotic use, some physical therapy, a few instillations, and a measure of accupunture. I felt nearly "cured" 4 months into my 6 months of antibiotic use. Once off the antibiotics, back to full on IC. No mainstream docs of mine (large, university health care system here in Tampa) wanted to prescribe any more. A few instills brought some relief... but it was hit or miss... and some would flare me. I was Googling "disability" and so sad about my future. I met a doctor at a party (a D.O.) who also worked with medical marijuana. He said, about my antibiotic experience, that doctors do not know everything antibiotics do... they also have anti-inflammatory properties, and function in ways we don't completely fully understand. So, while I was inclined to think there must be some underlying "bug" still in my bladder, and that's why the antibiotics helped... maybe not. It could have been the anti-inflammatory properties. He was willing to write additional antibiotic prescriptions for me because he said my quality of life was more important than anything else. I immediately liked this doctor! I went to formally visit with him at his office to also look into medical marijuana. While I was waiting for my medical marijuana card from the state of Florida, he suggested I try some CBD hemp oil that he sold in his office. This was The Day My Life Changed. Within 2 days of trying the CBD hemp oil, my bladder calmed down. I had a 70 to 80% reduction in the feeling of having a bladder infection (my primary symptom). 70-80% was the difference between Googling "disability", to making plans for my future. I went off all of the prescriptions except the hydroxyzine (now just one a day at night, and I only take it because it helps me sleep - it never took away my feeling of having a bladder infection constantly). I stay on a birth control pill to keep my periods away completely. The physical therapist has done wonders and teaching me different sexual positions that trigger flares much less and sometimes not at all, (it's all about angles). Lastly, acupuncture is just the little missing link that helps with my overall well-being. I make sure to take natural supplements too. My IC is not gone completely. I still have flares here and there. But I stay on the diet, take my CBD oil, and it is the difference between a hopeless future and planning for a future. I strongly believe that women who start with IC from a bladder infection and damage to the interior of the bladder are dealing with a chronic inflammation within the body and CBD oil (whether it is from hemp or marijuana) go after all inflammation in the body. You don't even have to take medical marijuana (look for a strongly CBD based one versus THC) so long as you have a very good quality CBD hemp oil (they are not all created equal... in fact, my doctor changed CBD oil brands in his office and I noticed a change in my symptoms, so you have to find the right oil for you). You can take it with you on trips and across all 50 states because it's completely legal! You have a cannabinoid system in your body, you just don't know it.**I was so anti-pot in my previous life, it's amazing that I am now educated on these things and a proponent. I would strongly recommend that women who have developed IC from bladder damage, to try this. On a side note, I sent the same oil to my aunt said arthritis for 20 years and she's pain free for the first time in those 20 years. I sent the same oil to my aunt who has Parkinson's and it has reduced her tremors. I believe CBD oil has not gone mainstream and marijuana has had all of this legal issue because the major pharmaceutical companies understand what it will do for people. I am not a doctor. I'm simply talking about my own personal experience. I understand exactly where you are, and your journey. You've tried everything right? If you haven't tried this, maybe it's time. I wish you all the best on your IC journey.
            What brand of oil do you recommend?

            Comment


            • #66
              Re: CBD saved me (hemp or marijuana work!)

              The one I bought is "empower bodycare products" --- I get topical relief lotion scented with lemon verbena. I'm sure there are many different ones that will work just as well.

              Donna
              Stay safe


              Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
              Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

              Have you checked the ICN Shop?
              Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

              Patient Help: http://www.ic-network.com/patientlinks.html

              Sub-types https://www.ic-network.com/five-pote...markably-well/

              Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

              AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

              I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
              [3MG]

              Anyone who says something is foolproof hasn't met a determined fool

              Comment


              • #67
                Re: CBD saved me (hemp or marijuana work!)

                Originally posted by ICNDonna View Post
                The one I bought is "empower bodycare products" --- I get topical relief lotion scented with lemon verbena. I'm sure there are many different ones that will work just as well.

                Donna
                Thank you so much Donna. I told my neurologist’s nurse today I was going to try some and she agreed it was worth a try. I will look for that!

                Comment


                • #68
                  In response and for feedback on the link Re: CBD saved me (hemp or marijuana work!) Will be trying a prescription of MMj/CBD soon. I was wondering if anyone has urinary retention issues? I do, as well as chronic constipation, A.I. Erosive gastritis,etc. Could CBD help or aggravate? Thank you.

                  Comment


                  • #69
                    Hello,
                    i havent been on here in a long time. So just a bit of background. Diagnosed with IC going on 30 yrs ago, fibromyalgia, colon removed in 2015 ( no bag, surgeon was able to save part of sigmoid), TBI ( traumatic brain injury), not severe, just a bit of short term memory issues, PTSD and a pancreatic issue.
                    i have taken everything u can think of from Elmiron, instills ,atarax, oxybutinin, tramadol, amatriptaline( not sure of spelling sorry) as well as to reduce bladder spasms and to help with the PTSD.
                    Im permanently disabled. For the most part this IC rules my life.
                    and now my dr tells me she is going to be taking the xanax away, due to drug laws.
                    Ive NEVER tried marijuana but i do have a bottle of cbd here. One of my Australian shepherds had very severe noise phobia and the cbd oil helped him alot. We lost 2 of our Aussies in 5 wks and it has been the most devastating thing i have ever been through.so once again its been a very stressful yr, which as we know can highly effect the bladder.
                    I am willing to try just about anything at this point. Does anyone have suggestions on what cbd oil they are using? The one i have is cbd oil ( mct oil) which is a ratio of 28 cbd: 1thc. Its called Jadens Juice. ANY SUGGESTIONS PLEASE!!
                    Thank you

                    Comment


                    • #70
                      What is the name brand you use and how much? When did you see results? I have the same type, not muscular.

                      Comment


                      • #71
                        This is why it pays to be picky about CBD sources. From The Week's most recent issue:



                        I use Charlotte's Web myself. They have batch reports available on their website.
                        Last edited by Pillowfight; 02-10-2019, 09:00 PM.
                        Diagnosed with IC in 2005, PFD in 2016. My sister has had IC for 21 years and our mother over 30. 66 years of bladder fun combined!

                        Comment


                        • #72
                          Hello Gina,
                          I am interested in trying out CBD oil for two reasons. I have been on anxiety medication for sometime and I heard it helps with this, additionally I have been doing some reading and it is suppose to help with IC? Wondering if it helps with IBS too? Additionally I am on a small dosage of noretriptyline that helps with pain from sitting.Also on Elmirion. The bottom line medication does help me but I also need to give my body a break as it is so sensitive. When I spoke with my doctor about reducing anxiety meds he said that I might experience more pain again. I have no idea what kind of dosage I would need also there are so many different brands, it is a bit overwhelming. Marijuana is legal now in Canada, and I hope because of this more research will occur to help people dealing with chronic illness and conditions, to find out how this drug helps alleviate pain would be good to know. I am very down today, dealing with an IBS flare. I am on a special diet, but I wonder with stress-end of 12 year relationship-and my ex lives downstairs(yes hoping to move, when I can find a nice affordable place) if this has caused my recent flare. Have also started acupuncture, did you find it helpful how often do you go? Thanks for your help
                          Katrina

                          Comment


                          • #73
                            Originally posted by KatrinaE View Post
                            Hello Gina,
                            I am interested in trying out CBD oil for two reasons. I have been on anxiety medication for sometime and I heard it helps with this, additionally I have been doing some reading and it is suppose to help with IC? Wondering if it helps with IBS too? Additionally I am on a small dosage of noretriptyline that helps with pain from sitting.Also on Elmirion. The bottom line medication does help me but I also need to give my body a break as it is so sensitive. When I spoke with my doctor about reducing anxiety meds he said that I might experience more pain again. I have no idea what kind of dosage I would need also there are so many different brands, it is a bit overwhelming. Marijuana is legal now in Canada, and I hope because of this more research will occur to help people dealing with chronic illness and conditions, to find out how this drug helps alleviate pain would be good to know. I am very down today, dealing with an IBS flare. I am on a special diet, but I wonder with stress-end of 12 year relationship-and my ex lives downstairs(yes hoping to move, when I can find a nice affordable place) if this has caused my recent flare. Have also started acupuncture, did you find it helpful how often do you go? Thanks for your help
                            Katrina
                            It must very stressful to live in the same building as your ex --- you might want to down your search to a "so-so" place you can afford --- and continue your search for a better one. I decided to try CBD lotion applied to the skin because it's used externally and I have some concern about how internally it might not be good with my other medications. I have a pretty severe neck muscle problem and I was amazed at how much it helps with that.

                            Sending well wishes,
                            Donna
                            Stay safe


                            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                            Have you checked the ICN Shop?
                            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                            Patient Help: http://www.ic-network.com/patientlinks.html

                            Sub-types https://www.ic-network.com/five-pote...markably-well/

                            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                            [3MG]

                            Anyone who says something is foolproof hasn't met a determined fool

                            Comment


                            • #74
                              Gina- do you need a doctors order or prescription or this? I’d like to try your brand. What is the brand and could I order online?

                              Comment

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