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My experience with COLEUS FORSKOLIIi. Has anyone else here tried it?

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  • My experience with COLEUS FORSKOLIIi. Has anyone else here tried it?

    First, it's been a while since I posted here.. not that long after I was diagnosed with a rare, late onset version of HCM with obstruction (140mm gradient). I was 50 when I plummetted from feeling reasonably OK, if a bit puffy and SOB in 80 F heat.. to stage 4 heart failure in only ten days. My mum had experienced this aged 69 after a lifetime of fatigue and general "unwellness". Unfortunately it took the UK cardiologists a full year to diagnose my mom's HOCM during which time her left ventricle "blew out" due to the undiagnosed dynamic obstruction so she was finally diagnosed as a DHOCM in stage 4 heart failure. After my kicking doctors' butts, I got them to agree to fit a Biventricular Pacemaker which helped her a little but as she was still obstructing despite drugs and had uncontrollable AF (cardioversion did NOT work for her) I kicked butt again and persuaded them to do an Alcohol Ablation in 209 which 100% relieved the AF.. it cleared the obstruction and the pacer could do its job 24/7. However, although she went from end-stage back down to a Stage 3 heart failure, because we have the late onset variant, her myocardium continues to deteriorate, as does mine.

    In April 2012, having been on Metoprolol twice daily, I started to have breakthrough symptoms. My doc changed me to an Extended Release, a one daily variant which helped but by June 2011 I had continued to get worse with really dreadful side effects from the Beta Blocker.. principally severe insomnia (sleeping 2 hours a night), weight gain, cold extremities, killer fatigue, blurred vision, worsening heart failure, dizziness, hair loss and depression! I was ready for a referral to one of the Centres of Excellence.

    At this time, my mum, who was at the absolute end stage, was suicidal.. she wanted me to tell her the best way to kill herself. She couldn't even walk 12 feet to the bathroom on her own at that time and because her lungs were waterlogged (pulmonary oedema) she said she felt like she was drowning. It was breaking my heart to see her like this.

    I started researching the comments and experiences on these pages to help me evaluate which might be the best center.. we are equal distance for John Hopkins and Cleveland Clinic and I planned on informing my Charleston cardiologist of my decision (he wanted to refer me after I was diagnosed). I also continued to research to see if I could find an alternative to that dreadful Beta blocker. Mom had ended up on the ACE inhibitor Perindopril for the previous 5 years and had only 50% of her kidney function left as a result so they were out the window for me as far as I was concerned.

    Once again, I went out into the obscure world of HOCM to tackle research leads. That is when I ventured into the field of Ayurvedic Medicine. In India, you do your medical training first THEN you do your Ayurvedic training. It is an amazing system of medicine and has always held a deep fascination for me in its approaches to health and disease.

    I happened upon a piece of research that had trialled an intravenous extract of the root of Coleus Forskolii, a member of the Mint family, in people with Hypertrophic Cardiomyopathy.. also a trial on rats. The conclusion was that yes, it increases the efficiency of the diseased heart muscle by 70%, thereby reducing heart failure symptoms. It also has beta blocker like characteristics so will relieve obstruction by relaxing the cardiac vasculature. I had not a clue as what the oral dose might be but I did find it was available over here in the US, touted as a weight loss agent (that did NOT happen for me by the way!). So.. I experimented.. successfully! THAT was a leap of faith indeed! Without informing my doctor (I know.. I am a naughty ex-registered nurse!), I dumped my beta blocker and launched myself into Coleus. In only 7 days I had gone from serious shortness of breath and chest pain/arrythmias from simply climbing the stairs.. all the way to planting 30 shrubs in an afternoon in 85F with hubby. For the first time in a year, I managed to walk across the dam and up into the woods where my husband was working.. to his complete astonishment.. and RAN back to the house! I had gone from a late Stage 3 heart failure back to an early Stage 2.

    Back to mum.. after seeing the amazing difference in me, she decided to go ahead and 1/2-dose the Perindopril, and introduce the Coleus. The effect was almost immediate. After two weeks, she was due her INR.. my concern being that Coleus thins the blood slightly. Her INR was unchanged.. YAY!..and the District Nurse who visits her to take blood remarked at how well she looked and sounded. Mom immediately dropped the remaining Perindopril and went 100% with the Coleus extract. She went from terminal end stage 4 heart failure back to a mid-stage 3. We finally established her on twice the dose I was taking.

    The difference for both of us has been truly amazing! Another benefit? We had both had borderline glaucoma through raised intra-ocular pressures but not high enough for drug therapy. For the first time in 25 years the pressures are normal. I had previously found that Coleus drops are used to treat Glaucoma in India. The only side effect that we are aware of with the Coleus is occasional heart burn as the plant extract increases digestive secretions and you do get loose stools for a while but those are tolerable side effects in my opinion!

    I broke the news to my doctor about dropping the Metoprolol and explained about the Coleus. I handed off an 8-page document that I had put together based on the limited research out there. He ran a bunch of tests on me as he was genuinely concerned, but and told me I was in great shape and that I was to continue whatever I was doing to feel so good.

    Mum's NHS cardiologist was not QUITE as pleased, even though for the first time in 5 years she has been going to the hospital, my dad did NOT push her into the clinic from the car park in a wheelchair.. she walked, albeit holdig his arm. Doctors are supposed to follow the "NICE" protocol and of course Coleus isn't in the protocol.

    Mum had long ago been told that as she was too old for a heart transplant and that the myocardium would continue to deteriorate, and that there was nothing else they could do for her so the cardiologist told her that this was her decision but that, legally, he could not give his approval.

    Since last June, we have both had to almost double our Coleus intake so I reckon the rate of mutation is more or less the same for us both.

    We are hoping that it continues to work for us.. we just titrate the amount we take to the symptoms we get. Fortunately the toxic dose in humans based on animal studies would be 4.5lbs of dried herb daily.. or 2.1 Kg. I take 1 gram daily... in four divided doses. Mum takes 2 grams daily in four divided doses.

    My mom has gone from being suicidal to being able to laugh and smile again which, for me, is just awesome. I believe that although I will be en route to a Center of Excellence some day, the Coleus is giving me an amazing respite from the complications of HOCM with minimal side effects.

  • #2
    Re: My experience with COLEUS FORSKOLIIi. Has anyone else here tried it?

    Hello Caroline. Welcome back. Obviously you know that most of us cringe at the thought of stopping meds cold turkey like that and trying herbal remedies, and especially for doing so without the knowledge or consent of your doctors. It could be very dangerous to do so. That said, I understand you, and more importantly your mother, were in a very hard place. I'm glad that you have found something that makes you feel better. I hope you continue to feel better, and I hope that if you start to feel worse you will consult your doctors for continued traditional treatment.
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      Re: My experience with COLEUS FORSKOLIIi. Has anyone else here tried it?

      Hi Caroline,
      I'm glad you're feeling better. But I do think we need to be cautious, as Reenie suggested. One reason is that not much is known about how this drug (it's a drug, regardless of the source) affects us. The other reason is that the dosage varies a lot in herbal drugs. I just read a bit about this drug online, and it seems that a real concern is that it can lower your blood pressure more than is safe.

      Gordon
      Myectomy on Feb. 5, 2007.

      Comment


      • #4
        Re: My experience with COLEUS FORSKOLIIi. Has anyone else here tried it?

        I forgot to mention that you should always remember that any herbal supplements or treatments can affect the other medications you may be taking. The interactions aren't always predictable.
        Reenie

        ****************
        Husband has HCM.
        3 kids - ages 23, 21, & 19. All presently clear of HCM.

        Comment


        • #5
          Re: My experience with COLEUS FORSKOLIIi. Has anyone else here tried it?

          While interesting, there is very little research on this and therefore one should be cautious. We have a very well-known expert in HCM from Cleveland who is against ingesting any vitamins, or herbals. He's testified before congress on how unregulated this industry is and the dangers of it. I'm glad this brought some relief for you, but it may not for everyone.
          Marc
          Diagnosed @ 48
          Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
          Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
          AICD - Valentines Day '08, Spark Plug replaced 11/14
          After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
          Quietly going insane . . .

          Comment


          • #6
            Re: My experience with COLEUS FORSKOLIIi. Has anyone else here tried it?

            Caroline, I am glad this seems to be helping you and mom. As the others have said herbal meds can be very dangerous when combined wit our other medications. I know,if I started to take them, my Mayo transplant team would not treat me anymore. So, just a reminder everyone be careful and let your docs know what you take.
            Midge

            Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
            ICD&Pacemaker 1996
            Heart transplant March 19, 2004 @ Mayo Rochester
            Mom of Kaye.

            Comment


            • #7
              Re: My experience with COLEUS FORSKOLIIi. Has anyone else here tried it?

              Thanks Reenie,

              I have always been VERY avant-garde when it comes to health issues. I KNOW that I will eventually have to go down the ablation route like my mom did.. or a surgical myectomy but I will do my best to postpone that day! Remember that I also confounded my neurologist when I was diagnosed with Multiple Sclerosis in 2005 by declining the Beta Interferon treatment and striking out on my own. As a Senior Nurse Practitioner and a degree'd Nutritionist, research was always my first line of attack so I threw myself into it and found some answers. After a year on Vitamin D3 taking 10,000 iu per day plus B12 as Methylcobalamin, 1000 mcg, EVERY lesion on my frontal lobe had gone.

              My doctors are VERY happy to see me doing so well right now. The Beta Blockers had become ineffective and were giving me such awful side effects. I was pretty much your classic cardiac cripple and was at my wit's end! My mum was suicidal and it broke my heart. Her cardiologist had said that to her poor state of health he had no intention on replacing the battery in her biventricular pacemaker. For her this was a death sentence.. when they have to "fiddle" with it, as she puts it, she immediately develops serious arrythmias and virtually loses consciousness. Her cardiologist told her that he had not expected her to still "be around" on her recent visit, let alone see her WALK into his office and is now saying that he WILL now change out her battery in April.

              Note that if I miss a dose my obstruction returns within 6-8 hours. The Forskolin is metablised so efficiently that is out the system in no time at all.. that is the only downside. This means that I have a pot in the bedroom, a pot in the kitchen and a stash in my purse! Thank God this stuff has virtually no toxicity according to extrapolation of animal studies. We are all different in this forum and one thing that suits one person may not suit another. I am blessed and fortunate that I have a strong background in biochemistry, nursing and nutrition, and so I was willing to take that "Leap of Faith" and that my prayers are, even now, being answered :^)

              Comment


              • #8
                Re: My experience with COLEUS FORSKOLIIi. Has anyone else here tried it?

                Hi Gordon,

                I have no intention of teling anyone to do what I have done because that is not my place here. However, I have cobbled together a loose body of research if anyone is interested to pass it on to their cardiologists. It amounts to around 8 x A4 pages. My doctors, and my mom's doctors (actually one is a leading light, Professor Michael Frenneaux, Regius Chair of Medicine at Aberdeen University) have copies in their files. Forskolin is a compound of natural origin.. like the theophylline in Camellia Sinensis and yes, you would NOT want to take it WITH a Beta blocker or an ACE inhibitor for example as it can have hypotensive properties.

                One of the most powerful effects of Forskolin is that it increases the efficiency of the Cyclic AMP cycle in cardiac muscle. It also has inotropic effects.. without the unpleasantries that normally come with inotropic drugs that can be a real problem for HCM'ers.

                I would also add that the Forskolin I take is a purified, standard extract of Coleus Forskolii, standardised at 10%, and NOT the "whole herb". I will, however, keep taking my "whole herb" decaffeinated China Tea and enjoy using Whole Herb parsley with my mashed potatoes.. not just for its diuretic effects but because it tastes so flippin' good!

                Caroline
                Last edited by CarolineS; 03-18-2013, 11:40 PM.

                Comment


                • #9
                  Re: My experience with COLEUS FORSKOLIIi. Has anyone else here tried it?

                  Hi Reenie,

                  About drug interactions with vitamin, mineral and herbal supplements.. there are SOOoo many to consider with any drug!

                  However, remember that many drugs also CAUSE serious nutrient deficiencies.. and this is something we ALL need to be educated about, whether caused by drugs inhibiting nutrient digestion, uptake, metablism or excretion.

                  Here is my own example with Metoprolol.

                  After a virtual lifetime of fighting HYPOglycaemia secondary to PCOS, after only 8 months on Metoprolol my fasting glucose was borderline high.. HORROR!

                  I decided to dig out some of my old research and noted that Metoprolol.. in fact any beta blocker.. depresses Coenzyme Q10, Chromium and Melatonin levels.. seeing as I had developed severe insomnia (low Melatonin levels) and my heart failure was worsening (possibly CoQ10 deficiency?), and knowing that low Chromium levels can be a precipitant of Type II Diabetes, I put two and two together and decided to add in Chromium Picolinate at the rate of 400 mcg daily. I have now cut to the RDA of 200 mcg daily because there is certainly a chance that Forskolin, with its Beta Blcoker-type activity, could impact these same nutrient levels. My blood sugar levels have droped back to the low end of normal. So what this illustrates is that drug/nutrient interaction is definitely a 2-way street!

                  Comment


                  • #10
                    Re: My experience with COLEUS FORSKOLIIi. Has anyone else here tried it?

                    Caroline, I'm glad that you seem to be feeling better.

                    It's a personal choice whether to self-administer various herbal meds, vitamins, and the like, whether for HCM, MS, or any other problem. But I don't advise that others do the same. It's always possible that some of these will turn out to be useful, but there's a general lack of evidence that these are safe and effective treatments.

                    Gordon
                    Myectomy on Feb. 5, 2007.

                    Comment


                    • #11
                      Re: My experience with COLEUS FORSKOLIIi. Has anyone else here tried it?

                      Gordon, I 100% concur. I have NEVER advised anyone to do what I have done with the Coleus and I would NEVER advise individuals to do it in the future. THAT is between them and their doctor and is not my job. I do, however, think that we need to at least be open-minded, and not blinkered about new research possibilities. Remember that centuries before chemists extracted Digoxin (Lanoxin) from Digitalis Purpurea it was being used to successfully treat Heart Failure by unqualified herbalists. In 1775 the cardiotonic properties of Digitalis were reported to the medical profession by a Dr Withering. HE learned of its use from a Mrs Hutton, a herbalist of the time who cured a patient of severe heart failure when the Royal College of Physicians failed. The rest is history.

                      Comment


                      • #12
                        Re: My experience with COLEUS FORSKOLIIi. Has anyone else here tried it?

                        Caroline, of course a large fraction of drugs used today were originally derived from plants. And there is still active research on plant-derived compounds for medical uses.

                        But I think there are two problems with arguing that using herbal remedies - especially herbs that have big impacts on things like the cardiovascular system - is likely to be a good idea. First, while it's true that useful compounds have come from plants, that doesn't mean that any particular herbal remedy (or herbal remedies in general) are likely to be safe or beneficial. Second, even if we knew that a plant product could be effective, there's no control or regulation over the contents or concentrations of herbal remedies sold on the market today. That's why I don't recommend using these drugs, especially as treatments for serious problems.

                        Gordon
                        Myectomy on Feb. 5, 2007.

                        Comment


                        • #13
                          Re: My experience with COLEUS FORSKOLIIi. Has anyone else here tried it?

                          Hi Caroline,
                          Thank you so much for sharing your experience. I have always thought that our medical system would be much better if medical doctors and homeopaths worked side by side with each other. I feel that there is much to be gained in both. I understand that in no way have you suggested that anyone follow the path that you have chosen, however I can definitely understand why you would not want to keep such a great experience to yourself. When a person is at the end of their rope they will try anything, because the there is no way to go but up. The wonderful thing about living in this country is that we are able to make our own choices, even ones that are not readily accepted. I believe that if not today, maybe in the future this post will give someone hope. Thanks again for sharing and I wish only the best for you and your mum!

                          Shea
                          Mom of three
                          Diagnosed with HOCM 10/25/12
                          Myectomy 5/22/13 at Barnes Jewish Hospital

                          Comment


                          • #14
                            OK folks, it's 4 1/2 years since I last posted, and the "treating HOCM with natural medicine adventure continues.. bear in mind that in 2012, my cardio was talking about a septal myectomy.

                            I should, by all rights, have alreday had a septal myectomy by now, or at least a septal ablation (the European Gold Standard) already, but remain pretty darned good on several critical supplements. I was diagnosed with HOCM in 2011 by dual cardiac catheterisation, MRI and ultrasound. .

                            FIRST - FORSKOLIN. To refresh, I stopped the Beta blocker one day and started Forskolin three times daily the next day in 2012 This was a total leap of faith! i had only come across animal research and that was for Forskolin and DILATED Cardiomyopathy.. but when I found that it increased the efficiency of heart muscle by 70%, I was absolutely convinced this would work. 2 x 250 mg, 20% Forskolin three times daily. I had 48 hours of weird stuff.. visual/spatial hallucinations, sudden anxiety as part of the withdrawal from the beta blocker, BUT, inside of a couple of days, the improvement was obvious and dramatic. Details posted previously in this thread.

                            NEXT - N-Acetylcysteine.. an amino acid proven to reverse FIBROSIS in Cystic Fibrosis, and trialled in the human model of HCM in animals showing REVERSAL of fibrosis in that condition. Pre-trials were starting in Texas for humans at 600 mg twice daily but I was too late, but went ahead and started it anyway as it is widely available. Three years after starting the NAC, I went for a complete assessment.. Exercise stress test, scans.. the works. My cardio was stunned at my cardiac performance! Both Fibrosis and hypertrophy cause diastolic dysfunction. NAC REVERSES fibrosis! Yes it smells/tastes like skunk but that is a small price, and it is VERY cheap too The end result is that I have gone from late Stage 3 heart failure back to early Stage 2 over the past 6 years.

                            I take Ubiquinol 100 mg to support mitochondrial health, particularly the health and the function of the myocardial mitochondria, together with a LOT of Vitamin D3 (I have discovered, via a Functional Medicine Doctor that I have a severe mutation of the VDR1 or Vitamin D Receptor gene).

                            I take a daily Magnesium Glycinate/Threonate supplement as Magnesium is critical to myocardial fn, and my Furosemide depletes Magnesium of course. Throw in Potassium Chloride "salt" instead of NaCl with a little Zinc, and that's the electroytess taken care of

                            Finally, I take Hawthorn Syrup. Dr Christopher's Hawthorn Syrup.. 10 mls daily.

                            LINK to University of Michigan - on heart health includes reference to Hawthorn. I WAS getting bouts of SVT according to the monitor (a month over Christmas 2016 - UGH!) but since I upped my Magnesium and started taking the Hawthorn, they have 100% GONE!

                            http://www.uofmhealth.org/health-library/hn-1183002

                            Oh, and I am now down to just TWO Forskolin 20% 250 mg twice daily

                            So for now, that is how I am progressing

                            Oh, and the proof, they say, is in the pudding. Since 2015, we run a holistic poultry farm here in West Virginia. Just look at me go!

                            Feeding the Chicken Hordes at Shady Grove Farm West Virginia - I fall over, but bear in mind that I also have Multiple Sclerosis and Ehler's Danlos Type III hypermobility syndrome and it's not too bad for a 56 year old HOCM sufferer!

                            LINK TO FACEBOOK VIDEO AT SHADY GROVE FARM - https://www.facebook.com/ShadyGroveD...3599111786971/
                            Last edited by CarolineS; 12-17-2017, 07:49 PM.

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                            • #15
                              Hi Caroline,

                              thank you for sharing with us your very interesting experience. Wish there were more posts like yours about alternatives for managing HCM conditions.

                              Vital

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