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    • #11375
      Jean Mellano
      Participant

      I have not yet looked into medical cannabis as an option, mainly for 2 reasons.  First, I live in NY which has additional requirements for doctors to prescribe for PD ; patient must have at least one associated condition — extreme malnutrition, severe or chronic pain, severe nausea, seizures, or severe or persistent muscle spasms.  None of these apply to me.  Also, I have heard it is most helpful for tremors which I currently do not have.    Have you tried medical marijuana and has it helped you?  If so, which symptoms?

    • #11553
      William
      Participant

      I have read many articles about medical marijuana and how it can help you in terms of chronic pain, bone injuries, eating disorder/anorexia, anxiety disorders and panic attacks, inflammation, even cancer and a lot more. Like this article about a marijuana strain from http://www.ilovegrowingmarijuana.com/blackberry-kush/ . Cbd and thc are also new to me and I don’t even smoke. If this is true I cant find any solid conclusive evidence that speaks to its efficacy.

    • #11554
      Jean Mellano
      Participant

      Thank you William for sharing your thoughts.  My experience with marijuana was in high school, I smoked, I laughed, I got hungry, I fell asleep. LOL

    • #11686
      calumhagget
      Participant

      It’s seems like the funniest experience you have , medical marijuana is not beneficial for the teenagers that’s why doctors prescription is necessary before using it for your own.

      • #11687
        Jean Mellano
        Participant

        Calumhagget, makes sense to me….

    • #14186
      samantha
      Participant

      If you take a small dose of medical cannabis at night, you’ll sleep through the high from the THC. But always take a little less than needed to see how it works and add more as you get an understand of how the medicine works with you. It’s an individual thing. Everyone has a different tolerance. More here https://www.ncsm.nl/strain/high-cbd-low-thc-strains-list

      • #14187
        Jean Mellano
        Participant

        Thank you for sharing Samantha.  

        These forums do not provide medical advice, diagnosis or treatment. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this forum. The intention  of these forums is to spark discussion about issues pertaining to Parkinson’s disease.

    • #14212
      Boswell
      Participant

      Hello,

      I have tried medical cannabis and it has helped manage the dyskinesia as well as my appetite and my pain levels are lowered because of this wonderful medicine. From what I have gathered from my use of medical cannabis is that THC is a very important component in managing Parkinson’s as it activates CB1 and CB2 receptors which affect the brain, spinal cord, and peripheral nerve. These three symptoms if alleviated from the disease can increase the quality of life for anyone dealing with a central nervous system disease. This is something I love talking about, I love sharing my experience, and the little knowledge that I have come into from talking to Lee at King Harvest.

    • #14213
      Jean Mellano
      Participant

      Thank you so much for sharing your experience.  It can give people hope.  Do you experience bradykinesia, poor fine motor skills , balance and/or fatigue?  If so, has it helped those symptoms for you?

      • #14214
        Boswell
        Participant

        So I think that a sativa strain is what will help with movement and mobility. The Uplift tincture that I use is great for fatigue and improve motor skills. Sativa is an energy inhibitor. Using this with CBD has been the best combination.

        • #14217
          Jean Mellano
          Participant

          Boswell, that is interesting, I will check with my CBD supplier about this.  Are you talking about CBD oil or medical cannabis?  I believe CBD has THC removed.

        • #14237
          Boswell
          Participant

          Hi Jean and good morning. I hope you had a nice weekend! I was busy with work and needed to catch up on some sleep. So CBD is a cannabinoid that is found in cannabis. Cannabis is hemp or marijuana. You can extract CBD and isolate the compound which a lot of companies are choosing to do so. However, I think that if you only use part of the plant then you are not going to achieve the maximum health benefit. I think hemp is great for manufacturing good, providing dietary supplements, and useful as over the counter medicines can be used. In my opinion I believe that the real medical benefit comes from marijuana. Which brings me to smoking. Smoking I think is a thing of the past and I think that in order to have real positive results oils or tinctures are healthier. The link I wanted to post was about medical cannabis I don’t consider it advertisement and the language is appropriate with no use of profanity.

    • #14216
      Boswell
      Participant

      Am I allowed to post videos from youtube here?

      • #14218
        Jean Mellano
        Participant

        It depends, it cannot be an advertisement for a product or practioner and cannot contain profanity.   Typically, I moderate each response so I would make an assessment as to whether or not it should be approved

      • #14219
        Jean Mellano
        Participant

        It depends, it cannot be an advertisement for a product or practioner and cannot contain profanity.   Typically, I moderate each response so I would make an assessment as to whether or not it should be approved

      • #14241
        Jean Mellano
        Participant

        Boswell

        feel free to post the link.

         

        Since i I live in ny , it has very strict requirements for prescribingmarijuana for Pd.  Plus, I am not so sure it would be a good fit for my symptoms 🙁

      • #14323
        Robert Reny
        Participant

        Thank you so much for sharing your experience Boswell

        There are studies which claim that <span class=”scayt-misspell-word”>cannabinoid</span> compounds may have the ability to stop or prevent the growth of cancer cells. After a detailed screening and analysis, researchers have identified 10 <span class=”scayt-misspell-word”>cannabinoid</span> compounds that stopped the growth of all the types of colon cancer cells, but it is unclear exactly how those compounds worked to stop the tumor growth.

        Researchers say if we block signals that tells cancer cells to divide, we could stop cancer.” 

        Source-  https://www.myhealthyclick.com/medical-marijuana-may-inhibit-growth-of-colon-cancer-cells-finds-research/

    • #15988
      Andrew L.
      Participant

      Have been gathering info on this, my impressions are as follows…  First off, it seems to me that most neurologists (like other docs) know little, which is understandable for those trained in the scientific method (which is all doctors in the US), as data from large controlled studies is lacking. So as far as medical science goes, at best this is in the realm of “guesswork”. In states where cannabis is still illegal I think a presumption can be made that most docs either know NOTHING or are hesitant to say anything (as they should be) because they don’t want to put their licenses in jeopardy. I personally have consulted with 5 different docs in two states who “specialize” in this, 3 appeared to be quacks and 2 appeared to me to be the real deal. This is in addition to multiple neurologists. Have also visited multiple dispensaries and talked to a lot of people.  What I learned so far (all comments are my personal observations only, do not hold up to scientific rigor) :

      1)this is NOT about getting high, which I think is a really bad idea for PD patients due to the cognitive impairment that can result.

      2) Probably best to get products from dispensary (need a card for this), as there are beneficial effects utilizing all the compounds and terpenes in the plants, which I don’t think you can get when trying to buy elsewhere. Also think products bought at dispensary probably have a more accurate profile in what you are actually ingesting.

      3)Personally I think sublingual drops are the way to go; though vaping has a quicker onset, don’t think there is enough data about the safety of inhaling anything, and given that PD patients are at a higher risk for aspiration pneumonia, don’t like the concept of adding another irritant to the airway.

      4) Cannabis products are sativa based, indica based or hybrids. Sativa is more for the head and has more psychoactive properties, indica more for the body.  There are certain terpenes in each that have different effects.  I think what we want is indica based compounds that relax the body.

      5) CBD is not psychoactive (and the trace THC found it sold by dispensaries is likely meaningless), and is probably the safest product to use though like with the rest of cannabis more studies are needed. Most of the CBD sold does not tell you whether it is indica or sativa based. However some dispensaries do. If you can find one that sells indica based CBD, I think that is the way to go to help with anxiety, tremors and insomnia. It definitely relaxes the body (subtly). It generally comes in vials  with a dropper that tell you the mg and cc in each vial. You have to do the math to dose it. I find 5-10 mg sublingual to be helpful (in most concentrations this is about half a dropper, but again need to calculate). Probably best to start very low and titrate up. Best guess is 1-3x per day is probably ok, as needed.

      6) THC products should be treated with extreme caution. I think most neuro docs would be against it because of the potential for cognitive impairment. I see no reason for a PD patient to mess with sativa based THC (really ever), which is what gets people the “highest”.  (Unless going to a Woodstock reunion ;weak attempt at humor).  However, indica based THC can be microdosed using a dropper that comes with the vial. 1-2 drops under the tongue at bedtime (dose is a tiny fraction of a mg) has been highly recommended  for insomnia (doesn’t get you high).   It’s all about risk: benefit imo. When weighing the potential for cognitive impairment from sleep deprivation versus the potential therapeutic effect form micro dosing indica based THC, I think the latter wins out. Personal opinion only, like the rest of what I am writing.

      7) Myrcene (a cannabis based terpine ) can be found in certain teas’ and is probably helpful as well. High concentrations are found in indica based THC.

      At any rate I will stop now. These are my personal observations and in no way am I recommending any of this for anyone.  Appreciate all feedback from anyone else pursuing this…and if anything I am saying is wrong (scientifically or otherwise) please correct me, am still learning.

      • This reply was modified 11 months ago by Andrew L..
      • #15994
        Jean Mellano
        Participant

        andrew, this is excellent info.  my neuro is open to cannabis treatment, and where i live (NY), it is legal for PD treatment.   the challenge is, finding someone who knows what the dosage should be.  i am so weary of trial and error with vitamins, supplements, mucuna and meds,  i keep getting false hopes that the next ‘thing’ will  work for me.. only to be disappointed once more and also more than a few dollars poorer:-(

    • #16000
      Andrew L.
      Participant

      Hi Jean:

      I am no wild eyed proponent of any supplement or treatment (including cannabis) not proven to help. Unfortunately , I think the vast majority of treatments /supplements for PD are completely bogus. I am hesitant to say “all” because I still hope. But I think the reality is that (almost?)  all of these supplements / pseudo treatments  are mainly supported by charlatans/ greedy people making money off desperate people  with a (so far) incurable, progressive disease. My neuro has term for it, he calls it “medical tourism”. I believe him, I don’t think there is anyone with more knowledgeable and up to date…  So when I go down a list of treatments, he says medical tourism/ medical tourism ad nauseum.  Sadly.

      However, we do know there are endocanabinoid receptors all over the body and particularly in the nervous system, and unlike  most (all?) supplements, it looks like cannabis may actually do something.

      https://parkinsonsnewstoday.com/2019/10/25/therapeutic-potential-of-cannabinoid-compounds-in-parkinsons-and-lid-analyzed-in-review-study/?utm_source=PAR+E-mail+List&utm_campaign=1913ab1c24-RSS_WEEKLY_EMAIL_CAMPAIGN_DAILY_US&utm_medium=email&utm_term=0_62dd4fb5e3-1913ab1c24-73265445

      Is it a cure? Highly doubtful.  Is it protective? Who knows, probably won’t find out for years. Perhaps in conjunction with other  meds? As per the article:

      “Notably, preclinical studies suggest that a combination of CBD with compounds modulating specific non-cannabinoid receptors — associated with neuroprotective and anti-inflammatory effects and activated by endocannabinoids — may be an effective therapeutic approach to ease Parkinson’s motor symptoms and LID”.

      As noted, I find 10 mg sublinguinal indica dominant CBD tincture (that has a full range of terpines, as per dispensary ingredients) to be of some clinical use (for myself only, not a recommendation).  I uses it 1-3x per day, as needed.)

       

      • #16009
        Jean Mellano
        Participant

        andrew, i have come to the conclusion there will not be a cure in my lifetime (I am 65).  all i can do is donate my brain to pd research and hope that those with pd that are still here can benefit from what may be learned.  as moderator for this forum, i block so many spammers who have THE cure for pd.  it sickens me that these people/companies prey on our hopes and desperation.

         

        you may want to create a new post on alternative treatments forum for this cannabis topic.

         

        as for cannabis access in NY, I can get my neuro to prescribe it and we do have places to get a cannabis rx filled but i have not pursued since no one can tell me dosage for neuro to prescribe.

    • #16001
      Andrew L.
      Participant

      Am wondering if I should post my experience in the supplement thread, wish there were more people I could network with who have thoughts on this…

    • #16002
      Andrew L.
      Participant

      I am sorry that you are in NY and do not have access to this  :(, tho would think/hope it is coming…

    • #16109
      Jo S.
      Participant

      I agree with everything that’s been said so far. I really didn’t want to take pharmaceuticals, but there’s really not much else available. I talked with my first doctor about it, as I knew nothing at all about medical cannabis and he really didn’t either. He said the same thing you’ll hear and read everywhere: There have been no solid clinical, peer-reviewed studies and everyone’s brain is different and responds differently to medical marijuana (MM). That’s why it would be virtually impossible for your neurologist to prescribe anything. Doctors know very little about how MM works, and there are literally thousands of MM options, and they vary from state to state. There aren’t any standardized forms as there are with pharmaceuticals.

      That said, I got my card and went to my dispensary. I’ve gotten quite an education since then. I tried vaping MM, which is supposed to provide more of an instant relief. I kind of enjoyed the experience of vaping, and it seemed to provide a bit of a calming effect for me, but I have since developed a very dry mouth and throat (not from the vaping, but probably from my meds or PD in general), so vaping isn’t a good solution for me. I also tried the sublingual oils, and those didn’t have much of an effect at all, but that might have been due to their strength, the low dosage I was taking, and a bit of general fear I had of them. I had a high CBD/low THC oil for the daytime and a high THC one for nighttime. The daytime one kind of “took the edge off” between my pills (which is what I was hoping it would do), but the nighttime one just made my mind race (and I need something to help with insomnia, fragmented sleep, and restless legs, so that didn’t help at all).

      I tried the daytime one until I ran out of it, and I recently returned to the dispensary. I’m now trying two other options (an oil for day — 1:19 THC to CBD and another oil for night (1:1 THC to CBD). They are VERY pricey (actually all the MM products are expensive!), but I think these will work much better for me. I’m mainly using them as an adjunct to my regular PD meds, as I need something to help during “off” periods. However, if they helped so well that I could give up the pharmaceuticals, I’d do so in a heartbeat. Occasionally there’s a story about someone along those lines, but I think the people who get that kind of benefit from MM are few and far between.

      What they’ve mostly helped with is calming me down and relaxing me so I’m not quite as restless and my tremor isn’t quite as active. Their effects are very subtle — nothing drastic (at least not for me). I’m going to continue with them to see if the more I use them the more effective they will be. Note that dosage is highly individual (another reason a neurologist can’t prescribe a product or dosage). I suggest going to your dispensary and talking with the pharmacist there. They will be able to educate you about the various products available, how to use them, what might be best for you based on your symptoms, and what dosage to start with and how to tritrate up.

      More research is being done in this area, but much more is needed. Until there is a cure (and I’m optimistic there may be one in a few years — I’m the same age as you are, Jean!), the MM may be the best option for helping us get through this without adding more and more and more drugs to our regimens.

      • #16123
        Jean Mellano
        Participant

        jo

        like you, i would love to give up prescription drugs. i wonder if the pharmacist in the dispensary near me is knowledgeable.  i plan to speak with my neuro next week about this.  the thought of vaping scares the heck out of me.  when i smoked marijuana in high school, i used to laugh a lot, eat, then fall asleep.

         

        i hope u have enough optimism for me in terms of a cure in our lifetimes 🙂

        • #16134
          Jo S.
          Participant

          Hi, Jean,

          The pharmacist at my dispensary spent a lot of time with me. They know they need to educate their “customers,” especially those for whom it’s their first time visiting a dispensary. I think they’re as knowledgeable as possible, given the number of ailments they cover and the number of products they sell. They want to sell something that will work for the customer/patient, because they want repeat business. 🙂

          Just be aware that it will take some trial and error to find the right product and the right dose in the right delivery system. And it’s expensive, so be prepared for that as well.

          Lower THC is better for PWP, so you shouldn’t get high at all. I didn’t get high with vaping, even with the high THC product. Vaping is supposed to work quickly but doesn’t last that long, whereas the sublingual oils work in about 15-30 minutes (if you can keep the oil under your tongue for 1 full minute); if you swallow the oil, it won’t have any effect for an hour or two because it will be going to your stomach rather than into your bloodstream, and whatever is in the stomach (especially if you’ve eaten fatty foods) will slow down its absorption. The oil lasts much longer, though (about 6-8 hours).

          This isn’t your high school marijuana, so don’t worry about getting giddy or having the munchies (although some people have reported that it does improve their appetite, especially if they had a diminished appetite previously).

        • #16145
          Jean Mellano
          Participant

          jo, i am used to ‘trial and error’ trying to get my pd meds right…since i dont have tremors, i wonder if cannabis is right for me.

        • #16156
          Jo S.
          Participant

          I guess it would depend on what symptoms you hope the medical cannabis will help and how well the PD meds are helping you manage them. I really wish there was a natural solution (better yet, a cure!) and we didn’t have to take pharmaceuticals. I think that’s really all that MDS and neurologists can do for us (prescribe more drugs, that is). 🙁

        • #16162
          Jean Mellano
          Participant

          jo, i believe drugs may have their place, however, for me, only to allow me to exercise which i think is the best solution.

        • #16165
          Jo S.
          Participant

          I exercise, but the meds also help with with symptoms that exercise doesn’t reach (such as tremors). Sadly, neither help with my cramps and muscle spasms.

        • #16168
          Jean Mellano
          Participant

          for cramps and spasms have you had  your potassium levels checked?  kiwis, bananas are good sources for potassium as well as salt substitute.  also, hydration is key…

        • #16178
          Jo S.
          Participant

          Hi, Jean. My potassium levels are fine (I’ve been vegan for over 40 years, so I gets tons of potassium in my diet). I also drink water constantly. These are PD symptoms — not symptoms from mineral or hydration deficiencies. Cramping and spasms go along with rigidity and dystonia and RLS. Not fun.

        • #16181
          Jean Mellano
          Participant

          i too am plant based.  nice to chat with a fellow vegan…  have you heard about lithium deficiency and dystonia? Naturopath Dr. Mischley wrote a thesis on it :  https://digital.lib.washington.edu/researchworks/bitstream/handle/1773/23725/Mischley_washington_0250O_11918.pdf?sequence=1

        • #16183
          Jo S.
          Participant

          I’m not comfortable taking lithium. There’s a lot of literature on it (that contradicts Mischely’s thesis) but no peer-reviewed clinical studies that would support it’s use in the treatment of PD. Until there are, along with recommend dosages for PD, I think I’ll steer clear of it.

        • #16184
          Jean Mellano
          Participant

          jo, i hear you.. so much information, what to do with it all?

    • #16274
      Daniel Williams
      Participant

      Hello! I haven’t tried medical cannabis, but it amazes me knowing that CBD has countless health benefits to offer. I’ve read several articles about cannabidiol products and how they work well in treating the symptoms of Parkinson’s Disease. While it is true that the symptoms of this disease are quite difficult to manage, it is believe that CBD is perfect for those who are suffering from Parkinson’s Disease, and this is actually pretty amazing!

      • #16289
        Jean Mellano
        Participant

        hi daniel, thanks for this info…my challenge with cbd is finding the right dosage

    • #16312
      Carol Rothfeld
      Participant

      Ever since Medical cannabis became available in Florida I tried the sublingual drops. I didn’t get any relief from the low THC for off times during the day. I used the higher THC drops at night but I still need medication to sleep. Recently pre-rolled smokeable became available. I tried the lower THC for the day off time. It helped for a short time. The higher THC that I used before bed really gave a strong hit. If you try it make sure that you do all of your night time preparations like brushing your teeth before you smoke it as the buzz is really strong. I don’t use it every night. Only when I am in a lot of pain.

       

    • #16315
      Jean Mellano
      Participant

      thanks for sharing your cannabis experience.   finding the right dosage and form to take it in must be challenging.

    • #16425
      jude
      Participant

      My dad, who is 85 and was diagnosed with Parkinson’s 10 years ago, is at the stage of falling a lot, hallucinations and psychosis. After a bad episode of psychosis/dyskinesias 3 weeks ago, he agreed to try CBD gels. We started him on a 30mg dose, 2x/daily from Garden of Life, full spectrum CBD (no THC).  My family has said he has been more calm and less restless. I just visited him in Buffalo from Colorado for 2 days and he did not have any hallucinations (he even said “I haven’t seen anyone lately!”), no spells of dyskinesia and no psychosis. It seems like its working and what a relief for my family.

      • #16445
        Jean Mellano
        Participant

        hi jude, thanks for sharing your dad’s experience.i am in process of trying to get an Rx for medical marijuana. I am at my wits end trying to find something that alleviates my fatigue which will allow me to exercise

        • #16456
          Jo S.
          Participant

          Hi, Jean. I haven’t found that MM or OTC CBD oil help with PD fatigue. Nothing has helped me with that, unfortunately. I usually can only exercise in the early morning, when I have more energy and zip (even though I’m stiffer then). Later in the day I’m just too exhausted/fatigued to do much.

        • #16473
          Jean Mellano
          Participant

          thanks Jo. I have heard so many positive anecdotal stories about MM, i will probably try it.  Even if it reduces my bradykinesia and anxiety (something I never had in my life) and even if it is a placebo effect, i will take it.

        • #16474
          Jo S.
          Participant

          It’s definitely worth trying. I’m still trying it (and trying to find the right product and dose). It’s a pricey experiment though, so be forewarned. Everyone responds to it differently, so you won’t know whether it works for you unless you give it a go.

    • #17085
      Davisonneil
      Participant

      A lot of discussion about very different compounds. I think it would be helpful to group these and participants experience with them by category. I also think the community would benefit by discussions about the specific symptoms they are seeking to  address.

      I am challenged by a severe stoop. I am in constant pain and to lessen it I find my posture worsening as I stand or walk any distance (say > 20m). It feels like some force has grabbed me by the scruff of the neck and is pulling me down, down, down. I also have the associated wooden gait (eg arms relatively immobile) and poor balance. My situation is complicated by severe scoliosis (curvature of the spine) and 2 disks which have been fused by surgery. Unlike tremors, the scientific literature, for the most part says – bad luck we have nothing for you. I am on the standard PD meds (levodopa and anti-seizure meds as I started throwing seizures). The meds have worked in that my seizures have abated and some PD symptoms have cleared up (I can smell again which is great  because I love to cook)

      I take a very strong narcotic (percocet) and CBD oil. My response has been very positive with a significant lessening of pain and a remarkable improvement in my posture and ability to walk. The CBD oil, unlike most of the compounds discussed here, has no THC and is very expensive to process. I live in NZ and there

      There is only 1 supplier in Canada that meets NZ  rigorous standards. A 1 week supply costs me $300. This will lessen but not much because of the large amount of plant material to yield a small amount of oil. I hope this is helpful and I would be grateful to hear of others experience with posture and mobility.

    • #17101
      Jean Mellano
      Participant

      davis, i have heard both cbd and med. marijuana are helpful for anxiety, tremor and pain. i am still waiting for my NY state paperwork to be approved before i can purchase med. marijuana.   i have no idea how much it costs here. feel free to start new topics/threads related to how you would like to see them appear.  the alternative treatment forum would be good for this.  https://parkinsonsnewstoday.com/forums/forums/forum/parkinsons-disease-alternative-treatments/

    • #17831
      Andrew L.
      Participant

      MM experiences continued:

      I think it is about to become mainstream in the PD community (by this I mean neurologists specializing in PD) that CBD at a 20 mg dose is helpful for anxiety associated with PD. Heard this from someone very high up in the PD medical hierarchy, though doubt there is any hard scientific data to back it up . I have also experimented with 12.5:1 CBD: THC for sleep which helps a bit as well (dose 10-20 mg CBD). I use the SL drops or gummies, does NOT make me high. Don’t like smoking as have asthma and possibly some chronic aspiration going on, and don’t want to harm the airwy. Finally, during a recent sleepless night I bit the bullet and vaped indica based pure THC for the first time, as this is supposed to be the most powerful treatment for insomnia as far as mm is concerned. The person at the dispensary told me to count 1 mississippi 2 mississippi to determine how long I should inhale. Big mistake for me. Not only did I get absolutely ripped on 1 hit, but also could not move without feeling dizzy. Wouldn’t recommend doing this alone. Needless to say sleep didn’t happen for a while (but a few hours later I did fall into a 4 hour coma). So if I try it again (doubtful right now) would take the smallest of inhalations or better yet microdose the sl drops (problem here is it takes longer to work). Of course the biggest problem with THC is cognitive impairment, however for those of us with severe insomnia nothing is worse than the cognitive impairment of not sleeping. So pick your poison. As always, nothing I am saying should be construed (or misconstrued) as medical advice, just relating personal anecdotal experiences.

      • This reply was modified 7 months, 2 weeks ago by Andrew L..
    • #17840
      Mary Beth Skylis
      Moderator

      Andrew,

      My Dad has been toying with CBD too. For him, I think it’s more about muscle tension and soreness. But he doesn’t sleep very well either. Do you feel like you’ve found a way to manage sleep?

    • #17844
      Andrew L.
      Participant

      Sleep is an ongoing challenge.

      I have accepted the fact that I will wake up somewhere around 2-4 am pretty much no matter what I do (I go to bed around 1130), and will probably be awake around an hour or two.

      My neuro recommends a dose of dopamine when I wake up, so I have been doing that (1 tab at 1030 pm, 1 tab middle of the night 25/100 carbi/levo) when I wake up (try not to do it if it is under four hours since last dose). Note: It seems to be acceptable to take as much as 8 pills of 25/100 carbidopa/levo in 24 hour period, and my doses during waking hours are fairly low. So am thinking if someone is already on fairly high day doses of Carb/levo, this may not be an option.

      I also do 10-20 mg of 12.5:1 CBD:THC 1 hour before bed and again at 2 AM. Even if it doesn’t put me to sleep, it reduces any anxiety I may have around it.

      OF course everything is better with exercise, including sleep. I also have a meditation chair and a massage chair that I use when I can’s sleep that are near my bed. There is also the option of taking a small dose of a benzodiazepine (I like estazolam) if all else fails.

      I may try the pure indica THC route again, but if so will be very careful to inhale only a tiny amount.

      Finally, melatonin does nothing for me, thought I would mention that. Someone once mentioned taking 2 time released Sinemet plus melatonin as their “magic bullet”, but time released Sinemet was like taking a placebo for me (i.e. didn’t work,) though only took one.

      Note: None of this is medical advice, purely anecdotal….

    • #17849
      Rick M
      Participant

      My major challenges are chronic fatigue and restless sleep; sometimes waking up in the middle of the night and waking up early in the morning and not being able to go back to sleep.

      My experience with recreational use of marijuana when I was younger was fatigue and foggy head the next day so I would be reticent to start using for sleep as I fear it would aggravate my chronic fatigue.

      For my restless sleep, I do take .25mg of Clonazepam ( a benzodiazepine) nightly for sleep which seems to help.  My doctor prescribed .5mg. but I only take half of that.  I am surprised I only saw one other reference to  benzodiazepine in this thread.

      There has been some articles about the risks of benzodiazepine but my neurologist who specializes in PD highly recommended for restless sleep.

       

    • #18221
      Olivia
      Participant

      I usually buy a CBD flower. I have anxiety and its very helpful for me. I can sleep and tell with friends normally. In my opinion https://berkshirecbd.com/shop/cbd-flower/ best shop with premium quality CBD buds.

      • This reply was modified 6 months, 2 weeks ago by Olivia.
      • This reply was modified 6 months, 2 weeks ago by Kevin Schaefer.
    • #18224
      Andrew L.
      Participant

      Hello: Have been experimenting with medical cannabis for anxiety and sleep for the better part of a year now. I find that all of the different dispensary’s in my town in Florida have slightly different products. Have started using 12.5:1 CBD to THC. The dose for anxiety is 20mg (for most concentrations this is one full dropper) sublingual. I like this best in the evening before going out or just for chilling a few hours before bed. Definitely helpful so I am somewhat relaxed when I hit the hay. I have also been struggling mightily with sleep but for the first time in eons think I may have found a solution (for me) as I have now had 3 of the best sleeps I have had in several years after getting this horrible diagnosis. Note: I have tried benzodiazepines, melatonin, antidepressants, exercise, meditation and massage all with little to no avail. So what I do is CBD as above a few hours before bed time, shut lights around 11 PM, and then when I wake at 2 am (which is always) I vape pure indica based THC. Because I can’t tolerate big “hits” due to a sensitive airway, I take 3 small puffs…have done this 3x now and the result is I have slept 4-5 solid hours more. Wonder drug if this continues! AM tempted to praise the almighty. (before trying this I would sleep from 12-2am and maybe 5-6am on average.) Don’t get high or feel euphoric, just relaxed and sleepy. Like a normal person! And the next day I feel like a new man cause I finally got some rest. So the argument against this is that there are not enough studies done to determine the potential cognitive impairment from THC over the long term. But I would argue that the cognitive impairment from chronic sleep deprivation is considerably worse, plus the amount I am ingesting is 3 very small puffs. Note: I have tried sublingual THC , don’t like it as much cause onset takes too long. Now I can say that the times I feel most “normal” (like myself pre diagnosis) is when I exercise vigorously (which I pretty much do for multiple hours every day) and when I am able to sleep. None of this is a medical recommendation, just thought I would share my journey….

    • #18225
      Andrew L.
      Participant

      Just thought I would add that I am not a fan of the benzodiazepines because of tolerance (need more and more for same effect over time), plus addiction potential (probably the least of our worries with PD but nonetheless a problem.) Plus I don’t like them in my body during the day (most have very long half lives) as I think exercise is a critical part of treatment for PD, and I want to have the energy for big workouts and not feel lethargic. Just one man’s opinion fwiw.

    • #18226
      Jean Mellano
      Participant

      Andrew thanks for sharing.  I agree with you on the benzodiazepines.   My late husband was addicted to Ativan.    Bad stuff. I believe it is only a matter of time before these drugs are put in same class (in terms of addiction ) like the opioids

    • #18227
      Rick M
      Participant

      Hi Andrew,

      So you feel that the benzodiazepines makes you more groggy the next day than vaping THC at 2 A.M.?

      My biggest concern with THC is grogginess/being spacy  the next day

      Thanks

    • #18229
      Andrew L.
      Participant

      The short answer is yes. The benzos hang out in ur body and are cumulative. The half life of clonazepam, which seems to be the drug the neuro guys like for PD, is something like 40 hours, which means every time you take it half is still in your body up to 2 days later! (note: others are shorter but are still quite long.) The THC I am ingesting can be considered microdosing. The 3 puffs are very small, just enough to turn the light of the disposable vape pen on for a fraction of a second, it is a minimal inhalation, and I don’t visibly blow smoke out. I never get high, 4 hours later maybe mildly groggy but it goes away , esp with physical activity. Note: As noted above, I have also microdosed the drops sublingually, which seem to hang around a bit longer, more like 6-8 hours. Add that to the delayed onset using drops and I don’t like it as much as the inhalation. Note: I am asthmatic, so also have to be careful. Finally, it is my opinion (solely anecdotal based on a small sample size) that most neurologists no little to nothing about cannabis, esp in states where it has been recently legalized or remains illegal. I also forgot to say that I take a dose of carbidopa/levodopa ( 25:100) in the middle of the night as well (by itself not enough to put me back to sleep.) Finally, I tried timed release carbidopa:levodopa, didn’t work well for me at all. Again this is obviously just what has worked for me, not giving medical advice or suggesting what others do.

    • #18231
      Alan Tobey
      Participant

      In my 12th PD year I’ve learned to be minimalist and patient and to avoid running after the miracle molecule of the month. So with cannabis the first learning step I took was to start with a pure CBD tincture at a low initial dosage of 10 mg.  The experience was positive in two respects:  Subjectively,  the CBD makes me mellower and more relaxed without any stony edges or even any foreground awareness of an altered state.  Objectively I can point to two definite and measurable benefits:  taken in the morning, CBD dampens the higher-frequency tremors in my hands, improving my typing from very-terrible to merely bad, making me more functional. And it has essentially eliminated my osteoarthritis, which formerly appeared episodically for 7-10 days at a time at unpredictable intervals.  Given that every other substance recommended for “treating” osteoarthritis provided no more than palliative relief, this is a big deal for me.

      Other cannabis explorations lie ahead, with further benefit expected.

    • #18233
      Andrew L.
      Participant

      Alan: Glad this has helped you. I have also used 10 mg in the day, but do better with 20mg as an anxietolytic dosage, mainly at night. ( I get trying to keep your dose a low as possible, but unaware of any side effects at higher dosage.) I used to think that any THC was a bad thing, because the last thing I wanted was the jittery and paranoid feeling of being high that I had in my youth (sometime in the middle of the last century when I went to college.) But my thinking has evolved as there are many beneficial effects in the whole flower not only from THC but from the terpines and other compounds which all somehow work collectively in the so called “entourage effect”. And I never really feel high from the amount I ingest (indica dominant when THC is involved), just better…. At any rate I guess it is all trial and error for all of us, glad we have this forum to discuss it…

    • #18243
      Jeffery Hill
      Participant

      Recently I’ve been alternating between Indica and Sativa oil mixed with coffee in the evening. It takes at least 2 hours to kick in. I limit it to once or twice a week because I find the effects to be pretty strong (I’m working to find the optimal dosage).   I find that it impairs my balance a little, so I only do it when I know I won’t be moving around much for the rest of the evening (great for watching basketball games).  I also find that I feel a bit too groggy to drive the following morning (but I use the subway, so no issue).  However, several upsides:

      1. Great sleep

      2. Great performance in Spin class the following day

      3. Temporary respite from hand tremor while under the influence

    • #18250
      Mary Beth Skylis
      Moderator

      Alan,

      Do you mind me asking how you found a brand that works for you? Many people I’ve talked to seem to think that it’s tough to find a reliable brand that conducts third party testing. But I find it really encouraging to know that you’ve had positive results.

    • #18548
      samantha
      Participant

      As far as I know <span data-sheets-value=”{“1″:2,”2”:”Cbd works fine for parkinsons, but it is THC that has calming effect helps get rid of tremors and improve the balance. Very often patiens are prescribed high THC level strains like this one. I have read that high in THC (up to 21%) and very low in CBD, which makes it perfect for conditions such as stress, anxiety, and pain. “}” data-sheets-userformat=”{“2″:769,”3”:{“1″:0},”11″:4,”12″:0}”>Cbd oil works fine for parkinsons, but it is THC that has calming effect helps get rid of tremors and improve the balance. Very often patiens are prescribed high THC level strains like this one. I have read that high in THC (up to 21%) and very low in CBD, which makes it perfect for conditions such as stress, anxiety, and pain. </span>

      • This reply was modified 4 months, 3 weeks ago by samantha.
      • This reply was modified 4 months, 3 weeks ago by Kevin Schaefer.
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