Medical cannabis

Posted - December 2014 in Your Say

Anyone tried it for HSP?

Tim from NSW writes:

I have tried to obtain medicinal cannabis from northern NSW. I believe it would be of assistance with my muscular problems. Unfortunately the state government seems to have closed that down. Does anyone else use and where did they get it from?

Comments on this story

  1. Donald (USA) posted at 2:57 am on 29 December 2014Reply

    I have used marijuana. I have neuropathy on the bottoms of my feet, pins and needles feeling, sharp. It takes the feeling away, makes me feel better when it gets worse. I don`t do it all the time. I have used medical marijuana though. It`s better than taking pills, Baclofen, worrying if you can take a pee later on in life without a catheter. My older brother was taking Baclofen, I think his doctor prescribed too much for him, my opinion, because he ended up staying in bed, and passed away in March 2013.

  2. Noemi posted at 4:15 pm on 1 May 2015Reply

    Question for you Donald – do you have a confirmed diagnosis of HSP from a neurologist? Do you have spasticity and did you try Baclofen for it at some point? what was the effect of the marijuana on the spasticity?
    thank you.

  3. Editor posted at 10:24 am on 10 June 2015Reply

    Editor’s Note: This comment was posted to another article, but is relevant to this topic and so has been posted here as well.

    Ruud 5 June 2015
    I have tried baclofen but it had no effect on me (only that it make depressive and angry).
    But I don’t hear about the positive effects of cannabis. Because I am living in Holland, there is no problem to get a legal prescription for this. I smoke 4 times a day a cigarette with 0.2 grams of Bediol. This helps me to stay mobile and it reduces the pain I would have because it reduces the spastic movements of my legs. I am happy to share more information if people are interested.

  4. Julie posted at 6:45 pm on 27 September 2015Reply

    Diagnosed in 2004, has come a long way since, no cure or much advice back then, told that marijuana no good as it is a stimulant not depressant and thought it gave me more spasms and cramps at night if I had a puff, but there is a lot to be said about mind over matter, and if you think or told something is bad, you will think and feel it is no good, so go with what works for you and thank god I have mild form and I have been taking a natural drug called Crampeze every night for 10 years and I swear by it to stop spasms and cramps but I think I am so convinced it works it is a habit now. First diagnosed and told to take Baclofen if I want to walk normal then and there, but I chose not to and I manage my hsp as I see fit for me that works as you should no what you can and cannot do. Good luck with your disorder and manage it as you see fit for your body. Understanding it means a lot now as when I was diagnosed no one knew nothing.

  5. Matthew posted at 4:12 pm on 9 February 2016Reply

    I have had HSP for about 10 years. I have used Cannabis before for fun and I know its effects very well. Having HSP I know what works for me and what doesn’t. If I have any foreign chemical in my system It effects me hsp directly. I would get stiffness in my legs and it would effect my walking Gait. I don’t believe Cannabis can reduce Spasicity or give relief. It would make you feel as though It was helping you but that is the drug playing with your mind. Cannabis only leads to destructive Addiction.

  6. Ruud posted at 8:05 am on 1 March 2016Reply

    Some extra information about using cannabis as treatment for spasms. The last 4 months I have been using cannabis with a very low THC level (0,4%) and a high CBD level (9%). This is in Holland and Canada – available as Bedrolite. This has all the benefits of normal cannabis but it does not play with your mind. It works for me even better than the version mentioned in a previous comment. If I should get cannabis in a regular coffee shop in Holland the THC level is around 22%. This is the problem why you should not use this. The next step will be CBD oil (no smoking anymore) but at this point it is not available (medical) in the Netherlands. Don’t expect miracles but since I have been using this I don’t need painkillers and have almost no spasms.

  7. Julie posted at 8:27 pm on 19 March 2016Reply

    Things have come a long way since I was diagnosed 12 years ago and very interesting to hear other peoples comments, especially on cannabis. Ruud with his story on CBD oil sounds like a better option than smoking THC cannabis all the time and I know cannabis affects me, sometimes drinking at the same time and I can not walk after as my legs stop functioning but I know I am not blind but being carried out is not a good look. Wondering if cigarettes are really bad and have indulged in cannabis, drinking but no real hard drugs anymore, wondering if this affects my hsp any more than it would normally, but what is normal, cannot bring myself to be a teatotaller.

  8. Jason posted at 5:56 am on 31 May 2016Reply

    I have had HSP for just under 10 years. The Dr’s didn’t know what is wrong with me. The Dr’s don’t know how long it will take before I’m in a wheelchair. I tried Baclofen but it seemed like it didn’t do anything. Just wondering if anyone has tried anything other than what the Dr’s have told them to take? Or any other options there are.

  9. Tim posted at 7:13 pm on 8 November 2016Reply

    I have bitten the bullet and ordered Canabis oil from a reputable, husband and wife supplier in Queensland. Strength 1000 mg. There is no THC only CBD SO HERE IS HOPING.

    5 drops a day. Everyone cross your fingers and everything else. I had to try something; gradually deteriorating; last Thursday and Friday pain was 100 out of 10.

    • DJ posted at 9:59 pm on 30 November 2016Reply

      Tim, please keep us updated on your experience with Cannabis oil. I am working with some patients in Kiev, Ukraine who are anxious for a solution that works.

      I run a non-profit that shares accurate information on Cannabis, and HSP is one illness we don’t have much data on.

      I wish you success!

  10. Tal posted at 11:14 am on 20 March 2017Reply

    I have had HSP symptoms since birth. For the last ten years, cannabis has helped me for stomach pain, but can’t get it regularly because it’s not legal here in Israel. I tried to get medical cannabis but didn’t get approved. I find that high THC level helps the most for me so it’s surprising to hear otherwise from other HSP people. I’m trying desperately to get medical cannabis approval and hope to hear if anyone else finds that high THC helps them too.

  11. Claus posted at 7:19 pm on 5 April 2017Reply

    Hi there,

    maybe you can have a look at:

    You can order online. I take drops with cbd in olive oil 5%. 5 in the morning and evening and it helps.

  12. Keith posted at 1:15 pm on 24 September 2017Reply

    Does anyone have information about the effectiveness of edible forms of cannabis for HSP symptoms?

  13. Manuel posted at 8:56 pm on 25 October 2017Reply

    Any updates? Would this be a viable option instead of the botox? My 4yr old son has spg4 mutation and botox doesn’t sit right with me.

  14. Rosann posted at 1:46 pm on 9 November 2017Reply

    I have had hsp for 25 years. I just tried a edible cannabis last week. I was able to stand without losing my balance. I’m going to try it again. I’ll keep you posted.

  15. Grant posted at 11:35 am on 30 January 2018Reply

    Has anybody in Australia tried the the cannabis? If so, what were the results?

  16. Lyn posted at 2:13 pm on 1 March 2018Reply

    I have had HSP for at least 10 years. I take 3x25mg daily and have been using it for at least 8 years. my physio who works for MS society at Lidcombe NSW suggested sativex (liquid marijuana) it is supposed to be good for spasticity. Has any one tried it yet? If so where did they get it?

  17. Mat posted at 12:54 am on 8 June 2018Reply

    Not cannabis related but I have been injecting Botox into my calfs and it has resulted in me walking much more freely

  18. grant posted at 2:03 pm on 18 June 2018Reply

    I have heard of a cannabis liquid Epidiolex. they seem to think that it may be able to assist. it is available, I think you can get it from your chemist. does anybody know about it from what FDA ok?

  19. Garry posted at 3:20 am on 6 July 2018Reply

    Went into Brisbane hospital 20 years ago and had tests as genes test was then 6k and available in USA and diagnosis was HSP have done the Baclofen , Lyrica & other associated drugs which have had affected bowel and bladder control and last year was encouraged to try hemp oil from Northern NSW at the rate of 9 drops per dose & increase by a drop until your body feels heavy then back off a drop after the 1st dose a persistent cramp in my left groin melted away after about 30-40 minutes and by the 4th night was able to get a full night sleep
    At the time was using Norspan 30 mg patch for pain and started getting itchy under patch and was also using a deep heat type rub on my left thigh which both broke out in a very nasty rash which was treated with antibiotics,I continued to use hemp oil until rash started to reappear & am of the opinion that the hemp oil didn’t agree with the linament and pain patch.
    At present I am in the process of having the genes test done now available in Australia and am trying to do the painful task of weaning myself off the pain patch as I want to retry the hemp oil thing in a desperate attempt to ease what is becoming a painful existence with joint and hip pain and increasing muscle spasm in legs and shoulders and lower back pain , I find night time the hardest seems like unused muscles spasm harder
    PS am currently using a scooter and Canadian crutches outside and wheelchair and Canadian crutches inside to remain mobile ,but shoulders are starting to feel the strain of carrying body weight
    My best wishes to all HSPers out there try to find something you love doing to keep your mind off the pain associated with the ailment it helps with the pain if you can keep busy

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