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  • This topic has 26 replies, 11 voices, and was last updated 1 month ago by Kathy.
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    • #16049
      Barbara Malcom
      Participant

      Has anyone tried CBD oil for COPD, PH or Gastroparesis?

    • #16050
      Barbara Malcom
      Participant

      Hey Brittany,

      I have AFib also and was in the hospital and they did a heart cath and found the PH. He has never treated it as he said it wasn’t bad but I read that the sooner it is detected the better it can be treated.

      • #16052
        Brittany Foster
        Keymaster

        Hi Barbara,
        Have the doctors talked with you about what they believe is causing it? Do they think that it is an underlying heart condition beacause of the a-fib too? Are you on any type of heart medications for the a-fib ? Maybe they are thinking that it could help improve the pressures. You should definitely ask your doctors why they don’t have you on medications specific for PH. Sometimes, like with my case, it’s because they are treating the underlying condition that is causing the increase in the pulmonary pressures. I would be interested in knowing what their response is !

      • #16164
        Chris LaRose Mev
        Participant

        Barbara, i’ve tried CBD Oil just once, i didn’t notice any help although i didn’t take daily. There are so many available and at different costs, how do we know what to try? Also, they’re not regulated by FDA, so you don’t know what your getting is what you’re paying for and they aren’t cheap depending on the “strength” you get.

        chris

        • #16168
          Brittany Foster
          Keymaster

          Good points Chris,
          It’s hard to know what brand to “trust” because there are a lot of people who advertise for CBD products that may just be trying to market it and getting money for advertisements from it. (I know a lot of celebrities have recently been doing this or creating their own line of CBD products). I wouldn’t even know who to turn to and ask about this. Maybe a holistic doctor or specialist would be able to steer you in the right direction for this and make suggestions for good brands and the amount that you as an individual would need. I think it’s best to get an expert opinion and not just from your own online researching. Because you’re right, you really don’t know what’s out there and what’s in the products that you’re using.

    • #16051
      Barbara Malcom
      Participant

      I am taking Bethesda Hemp Oil and have been for 3 months. It hasn’t helped my breathing but has helped knee pain. The company says they will have different kinds. I haven’t researched any other type. I was hoping someone had been taking a particular type that helped.

      • #16053
        Brittany Foster
        Keymaster

        Haven’t found anything that helped with the breathing so much, but might have helped me a little by loosening up some of the tightness in my chest wall and restriction. I know that there are a lot of yoga type exercises and stretching that works on the chest muscles and back muscles to help with the work of breathing. You should youtube some videos for yoga that help open up the chest or yoga for breathing ! This might help loosen the workload to breathe that many of us have to manage.

    • #16094
      Jimi Mcintosh
      Participant

      I want to try CBD Oil, it has been approved for 10 medical conditions, but it is illegal to grow it, possess it or to purchase and bring into the state.
      With the emphasis and attention being given prescription meds, insurers, legislators, federal government regulations, I fear that my only relief
      from this pain is CBD, WALMART, somebody medical insurers and several other dispensers, are taking away our options.
      When I hurt everything is fuzzy and bad, I feel that my doctors know whether or not a patient is addicted.

      I know people that have autoimmune diseases, that swear to the effectiveness of CDB. I have talked with PH, patients in CA, NV, and CO, that claim using CBD Oil for their PH
      makes life worth living.

      • #16095
        Brittany Foster
        Keymaster

        Hi Jimi,
        when you are talking about the “legalization” of it, are you referring to THC which is what is found in marijuana? I know they have laws about marijuana use depending on the state and THC but wasn’t sure there was regulations on CBD because most people can purchase it online and it doesn’t give the same “high” type feeling as THC. But there are CBD benefits that I have heard about including inflammation and pain relief !

    • #16136
      Jimi Mcintosh
      Participant

      Sorry, I get things confused at times, I was referring to the THC. I say it it benefits people with real needs, legalize it, people are dying while politicians are attaching personal agendas.

      • #16143
        Brittany Foster
        Keymaster

        I totally agree with you, Jimi! THC has helped so many people ! If it’s legalized in a few states already I believe it will be legalized everywhere one day. (Hopefully!)

      • #16169
        Chris LaRose Mev
        Participant

        Jimi, have you tried CBD Oil, it’s legal in all states and has 0 THC; the trick is to find 1 which works for you and insurance doesn’t cover. Discussing this might help us to hear about 1 which has provided some relief of our PH symptoms/side effects.

        chris

        • #16171
          Brittany Foster
          Keymaster

          True Chris!
          Did anyone use a specific brand or strength that seemed to help them? I can ask one of my friends today who uses it for her connective tissue disease.

    • #16179
      Gayle Meagher
      Participant

      I just started using CBD oil to help with shingles nerve pain. It is really helping!!I would definitely recommend getting it from a trusted source. I got mine from a Health food store that is run by a pharmacist. I also have a Naturopath that was a pharmacist for 20 yrs recommend it.

      • #16180
        Brittany Foster
        Keymaster

        Definitely a great suggestion, Gayle . I would refer to a pharmacist who has worked with CBD products before or a naturopath medicine specialist when it comes to CBD and different brands. There are so many that are advertised online and honestly I would rather get it from a source that is trusted and one that has worked with patients with this type of disease before. I would tell everyone to mention this to their PH doctors too especially because you never know the effects this could have on different medications. The doctors and pharmacist/naturopath medicine specialists would know best and they should work together on this !

    • #17502
      DAVID PETERSON
      Participant
        I have been using CBD oil mix’s with
        TH at night and it helps me sleep longer by reducing my pain from Lupus and waking from apnea, The CBD oil by itself helped during the day without any side effects, but if you add thx to it, it works better. Especially on my systemic Lupus.
      • #17507
        Brittany Foster
        Keymaster

        Hi David,
        Thank you for your feedback about CBD oil. I actually recently am trying CBD oil (without the THC in it ) during the day. I have had gummies with THC before and they helped reduce a lot of my night sweating I was having because of my apnea. I am glad that it also helps you and helps to relieve some of the nighttime pain! How long have you been using it for ? Did you notice effects almost immediately or does it take a bit to kick in?

    • #20140
      Helena Anfer
      Participant

      Guys im new with cbd and i need your help, i found this website that sells many cbd products: cbd oils, cbd gummies, cbd softgels, cbd vape, they even have cbd for pets; cbdworld99.blogspot.com their product seems good but i dont know for sure. maybe those of you who already have some experience on cbd could check it out and give me some insight on this

    • #22481
      Tom Harrold
      Participant

      Hi,

      I found this thread and just wanted to share my views on cbd. I’ve been a carer for 3 years for a man with quadriplegia who had PH. He used to take cbd oil he got online (I used to order it with him) and he always said it helped him to sleep better and reduced aches.

      I in no way vouch for cbd but I did order once myself from theterrificgreenco.com as was less expensive than most retailers around my exams and I did feel noticeably less anxious and was impressed.

      Hope this info helps. The company I ordered from were also quite helpful as they responded to my questions via email very quickly.

    • #22499
      Colleen Steele
      Keymaster

      @tom345 it’s so helpful when we take the time to share with each other the experiences we have had with products. Thank you for doing so! I have never tried cbd nor has my son. It’s something I’ve been considering though.

    • #22501
      Brittany Foster
      Keymaster

      @colleensteele as i said in some other posts, I think it is worthwhile to talk with a holistic place for CBD guidance. Even mentioning it to your doctors, they may be able to give you a good brand to try or the amount to start off with. I had my recommendation from a holistic/ naturalistic medicine specialist near me.

    • #22502
      Jimi Mcintosh
      Participant

      I am almost at the point of trying anything to improve my quality of life.
      My energy level
      is very low,I am taking B-12, iron injections, and lately experiencing itching and eczema flare ups.

      My pain meds only work at near maximum dose. I have researched the available oils and with some brands the active ingredient varies, all the changes with fentanyl has me overly conscious of OD. I am ready to order from a CA or NV state dispensary. Let’s keep the dialog going to see if there is a real
      Benefit to any of us

    • #22510
      Jimi Mcintosh
      Participant

      GA, is a southern state that puts the wagon before the horse. They passed approval to use the oil, no way to legally purchase it in state or out of state. Here you can get charged for driving under the influence for prescribed pain meds. I really want to be legal, but there are sources to get it from a certified source.
      The new laws on pain meds and how some pharmacies are only filling 7 days in a 30 day script, if one is out they will not call or tell you if it is available at another store in their chain. I recently requested a refill on xarelto in December, it was back ordered and wasn’t available until 1/8/2020, new insurance not accepted by pharmacy, cost went from $10.00 to $576.00. I am dealing with the state pharmacy board, since none of it was my fault.

      Our lives and others with a terminal illness is difficult enough without pharmacies and other medical providers are risking our lives for sake of profit. Trump promised relief from rapidly escalating generic and brand drugs, yet most have gone up 200 to 500 percent. A $.50 filter for my Oxygen is now $17.00.

      Thank god for having to platform to be able to discuss issues and to vent this
      Built up anger

    • #22533
      Colleen Steele
      Keymaster

      Brittany, I’ve heard so much about it and it’s intriguing but probably not something my son will be trying anytime soon. He has to be very careful since he is post transplant. If he ever becomes desperate for options it will be something I will research and approach doctor’s about.

    • #22538
      Douglas Knuth
      Participant

      Hello to all my fellow PAH’ers. I am replying to the CBD discussion. I have had IPAH for over 7 years, taking Remodulin subq & Opsumit for most of that time period. I tried Orenitram from Jan 2019 to May 2019 and I didn’t like the side effects of those pills at all. Which if you have ever been on Subq, you know that isn’t any fun either. Trying to make a long story short here. I am seeing some of you are interested in CBD oil / salves, but concerned about costs, etc. You will just for the moment have to trust me when I tell you that I have a daughter and son in law who own and operate a CBD business in Colorado. Their product is certified to have no more than 0.03% THC in it. Not going to get high at that level.
      They produce the CBD products as well as sell them online at http://www.mavericknaturaloils.com . Here’s what I have learned in the last 8 months of using CBD on my Remodulin subq site. My PAH doctor asked if I ever considered trying CBD to combat the nasty painful site pain and red inflammation I was getting. He didn’t know I had someone actually producing CBD in the family, and I had never tried CBD because as you know with the drugs we take, interactions can be serious or fatal. So I explained to him about my daughters CBD business and he ok’d me to try it out. This was last May. I kid you not, I used to get a big red inflammation area about the size of a grapefruit upon starting a new site for about 7-10 days. And pain severe enough to darn near make you cry while sitting or upon moving around. I started using 1000mg CBD salve on the site and what a difference it has made in my life! Not to sound like some snake oil salesman but applying the salve twice a day keeps me pain free and inflammation is very minimal until it disappears in about a week. You don’t have to use the highest milligram product either! I couldn’t believe it was helping my site pain frankly. I also have some anxiety issues so I also now take CBD oil to help with that. I had to learn how much to take and how often to take it. But it isn’t rocket science. I would recommend to any of you considering to take CBD to talk to your PAH doctor first. We each have separate medical issues on top of our PAH. If he/she is ok with you trying CBD, then please do yourself a favor and contact my daughter Melissa here thru her website or by phone. I would contact her by phone so she can help you with getting a discount and educating you about CBD products. She has informed me that she and her husband will knock off some of the cost of buying CBD products as she knows just how expensive our PAH meds are and how that straps us financially. I know you don’t know them, but I know my daughter and son in law. They are honest people putting out an excellent product. I would never promote a business normally on this site but it can’t hurt to check out the products they sell and talk to them about working out a price that you can afford if you are interested. I hope this helps those who choose to try CBD.
      CONTACT INFO:
      Maverick Natural Oils
      5471 N. Peterson Rd
      Sedalia, CO 80135 (303) 563-9296
      [email protected]

    • #22544
      Douglas Knuth
      Participant

      Brittany, for me when I started using the CBD salve on my site it was with 1000mg salve twice a day. In order to learn about CBD myself I played around with dosing since then for my subq pain to start out with 2500mg 2x a day for the first few days at least. If there is no inflammation or pain I then dropped to 500mg 2x a day. I am now to the understanding of CBD that I am lowering my dosage of CBD to figure out exactly how many milligrams I do need to control my pain & inflammation. Am now using 500mg salve 2x a day. I would suggest (knowing what I know now) to start with 500mg or 1000mg salve so that you insure that you get enough CBD to get good results. Then, as time goes by, you might be able to go with a lower dose.

      Same with the oils, I have used the 2500mg up to 5000mg distilled & Full Spectrum oils.

      The distilled oil has been distilled down to contain only cannabinoids. No terpenes, lipids or chlorophyll in it. The distillate oil contains small amounts of CBG and CBN along with all of the CBD.

      The Full Spectrum is basically the same thing as the Distilled except it has the other two CBD types are still in it & also contains the naturally occurring hemp plant compounds such as terpenes, lipids, chlorophyll, as well. Together they work in combination to give the health benefits of the entire hemp plant, not just CBD. Personally, I like the Full Spectrum oils.

      Typically with the oils, a person might take from a few drops under the tongue to maybe 1/2 an eye dropper of CBD depending on what you are trying to heal. The salve is the most economical in my opinion for external issues. Depending on the size of the area, I have had 1 oz of salve last about 2 months. It doesn’t seem to take a lot for it to work for me personally. When I first started using CBD all this information seemed overwhelming. But trust me, it’s not that complicated once you come to understand more. For most of us, we take pills right? We are used to how it feels to take 1-2 of a particular pill and we know how long it takes to feel better. With CBD, in time I have gotten just as accurate in knowing about how much to use and how long before it works. The best thing about the CBD is no side effects that I have found.

      Side note, I hope you are feeling & doing better Brittany.

    • #22571
      Jimi Mcintosh
      Participant

      Thanks for all the research on the oil, having reliable research makes the difference. Now planning a “James Bond” trip to stock up and get it home without
      Getting caught. GA prides itself on pecans, making America great and catching illicit drugs by land, air or sea.
      Brittany the day I found that they would only supply 30 pain pills was the mybday of greatest pain, felt like a drug addict, now having to travel around to find a drug store to supply 30 days and has it in stock is time consuming. I love the new government pain contracts, whereas you agree to only use 1 doctor, submit to a random drug test. LOL

    • #22691
      Kathy
      Participant

      I don’t know how to work oil, but I think when you smoke or vape flower CBD triggers receptor cells in the body that reduce airway inflammation. It is also believed that cannabinoids may relax the airways. Both of these effects could make it easier to breathe.

    • #22698
      Kathy
      Participant

      Usually, I prefer to buy premium CBD flowers in https://berkshirecbd.com/wholesale-cbd-flower

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