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Troy

Has anyone found Medical Marijuana Effects POTS?

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I'm considering trying medicinal Marijuana for my chronic pain and to relieve some stress, however I wanted to speak to you guys first as I am unsure how my body will react due to my POTS and Autonomic Neuropathy. The problem with me is that I also have an unusual chemical sensitivity to all analgesics, sedatives, stimulants or any other substance that acts on my autonomic system.

For the past few years I have failed to manage my chronic pain because every opiate pain medication I have tried has caused me severe adverse reactions resulting in trips to the ER with fevers and hyperthermia, muscle spasm and jaw clenching, irregular heart and abnormaly and rapidly fluctuating BP but mainly hypertension around 180/95 accompanied with a bradycardia heart rates around 45 bpm, increased head pressure causing headaches and neck pain, confusion, agitation, respiratory depression and feeling very unwell. My Autonomic system is totally messed up, even one glass of beer makes me very feverish and feeling horrible.

Before I developed POTS 10 years ago I smoked pot a few times and it was great however I am unsure if in my currents state if I would have an adverse reaction ? I'm mainly worried about it messing up my vitals such as blood pressure and heart rate so I'm considering taking an extra dose of my betablockers, is there likely to be any issues with the interaction of the two ? I can imagine you guys disapproving of my actions however I have my reasons and Ive had enough of being in pain all the time both emotionally and physically, I really need to do this but I need advice on what to to expect if things go bad and how I can minimize experiencing adverse reactions. thanks.

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There was just a very large post on pot and how it affects those of us with POTS on the forum not long ago. Why don't you try to do a 'search' (upper right-hand corner) with 'pot' in it. It should give you lots of answers.

Cheers,

Jana

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Thanks for the tip, I found a topic titled "Cannabis, No judging!!" , A few on there mentioned the worsening of HyperAdrenergic symptoms. In that case I still need an answer on betablockers as it was not specifically covered, I would like to know if it is safe for someone whos been on betablockers many years to ocasionally take a double dose to compensate for say a heavy bout of excercise or activity or smoking pot ?

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I don't think anyone here can assure you that you'll be fine if you double up your beta blocker dose, but for me personally, I take higher doses when I know that I am doing something more stimulating. I am on propranolol but usually take a very, very low dose. So for me to double my normal dose is still a really low dose. I am sensitive to meds, so I assume that if I took a dose that someone more normal would take, I could end up very ill.

In regards to pot, I used to smoke pot very occasionally prior to POTS with no problem. I tried it once after becoming sick and had a horrible, horrible response. If you do choose to use it, make sure you do so very, very slowly.

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Thanks, your help is much appreciated, I was wondering when you did have a horrible reaction was it of just one puff or more ? Because I believe I too would have the same reaction as you did and thats why I have decided no matter what I will not have more than just one small inhalation, however if your bad reaction was off just one small inhalation then in that case I dont think I will risk trying it at all, Im looking forward to your answer, thanks.

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As for the medical marijauna, I really am not sure how a person with POTS would react. However, if it reduces pain, and you can function better with it, maybe some of the side effects from the marijuana would be worth it? Not sure.

With regards to the double up of beta blocker, for me, my doctor has told me to take another 1/2 dose when needed, but no more than that in a day. I do know that when I've gone to the ER, they have given me additional beta blocker medication and base it on how much I am getting in my daily dose. When people have severe spikes in their blood pressure and go to the ER, they are given some medications, and one of them may be a beta blocker to get the BP back down. So with all that, if you talk to your doctor and they okay for you double dose, or an additional 1/2 dose when you need it, I would think it should be okay. I take a small dose, so maybe this is why adding another 1/2 dose is okay for me to do on really bad days. If my tachycardia is really bad from extra stressors, such as exercise, virus, weather, etc., upping the beta blocker and also adding in a small amount of xanax really does help.

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hi endure,

was going thru my email last nite---a new years cleaning...lol...and came upon this for you.

it was posted on 10/5/09.

interesting--as it explains diff between medical marijuana---and street marijuana.....!

hope this helps--as i sure got educated.

best regards, Pam

=======

Hey guys,

I wanted to tell you about my trip to the medical marijuana doctor because I thought it was cute/interesting and I thought some of you might be curious about it.

So, to get a license you have to bring in your medical records, and I did and let them photocopy a couple of important ones from Stanford that sort of summarized my issues. The doctor at the office was seeing other patients while I was filling in my medical background and reasons for smoking medicinally. He saw them very quickly, very formally, and the appointments all went by fast. So when I handed my paperwork in, I assumed I'd be seen soon. I was fine with waiting though---there were older people and some housewives in the waiting room and it reminded me a lot of a chiropractor's waiting room with brochures on the walls about herbs and alternative medicine.

About 20 minutes went by after the receptionist gave him my records, and he didn't see any other patients in the waiting room during this time, which was funny because the appointments were only like 5-10 minutes long before. Then he came out, and called my name, and shook my hand all nervously, not making any eye contact.

I sat down in his office and he started talking very quickly and somewhat nervously, still not able to look at me while he was fumbling through my paperwork. He was telling me that he's never seen someone with this type of condition and that he thought I was very brave for finding doctors to help me and for finding my own methods of treatment. He thought it was really tragic that there was no immediate cure and again, commended me on my strength for working and continuing on with life despite my condition.

He also started to talk about some of the treatments of Dysautonomia and some of the research being done at Mayo Clinic. I was shocked....did he look up all this info before my appointment? He must've been doing that while the 20 minutes passed. I told him that my medical records had been submitted to them a while ago for research purposes and that I really hope they continue to study all the mechanisms and causes of Dysautonomia because there is such a lack of information out there about it. He started praising me again, and telling me I'm going to be a hero someday because I'll win someone a nobel prize. Haha.

He was such a sweet guy, and so nervous to talk to someone with a REAL condition. He probably gets so many borderline cases day by day where he has to question whether or not it's really a need. It's pretty easy to get a prescription though so I assume they're given out even without need, but at least he can feel good about MY case. He was SO happy to give me my prescription, and he was doing a very good job at making me feel like he was a real, professional doctor and knew a lot about the medicinal qualities of marijuana.

He told me that people with POTS specifically should stay away from Sativas, which is the more "fun" strain of pot (the upper, the one that makes you laugh and have fun and feel motivated). He said that it gives normal people tachycardia and dizziness upon standing because it's a stimulant and acts on the nervous system in a way that would definitely exacerbate our symptoms. He told me I should just stick to mellow Indicas because they'll slow down the system more and give me a sedative effect that might sooth the tachycardia I normally get, and also they're supposed to stimulate the digestive system in a way that can help with constipation or slow bowel. He said I can take pot in pill form to make that work even better (and I've actually tried this, it works...but feels verrry weird in my insides lol like a numbness that flows through my tract...great for ulcers but it caused a little bit of weird burping for me). He also informed me that marijuana has a tendency to raise blood pressure which is great for my low blood pressure problem, and that a vaporizer may help better with that as opposed to burning anything. He said so much more, but it's definitely all online if you guys are curious about all the healing effects in studies. There are so many. Even just the ACT of smoking helps with anxiety because of the breathing in and out and of course the effect of the weed.

I think it's most important though to point out that this doctor completely confirmed my theory that certain strains of pot are horrible for us and others are more medicinal. Cheap weed found on streets are Sativas, Indicas are more temperamental and harder to grow, so they cost more and a lot of dealers don't really bother with them. My suspicion was definitely correct. I tried smoking for years before recently, and I thought I couldn't handle pot, but as soon as I started experimenting with different kinds of medical marjiuana, my life changed. I now have a sleeping aid that works, an anti-nausea drug that doesn't give my organs permanent damage, and an anti-depressant that works right away with the only side-effect of being high, which isn't all that bad once you get used to it after many months of tolerance-training. I didn't always like Indicas though, they made me feel like I couldn't think...couldn't focus on anything. Like horrible brain fog x 1000. But after a year of smoking medicinally, it's VERY different on me. I don't get as high, but the medical effects are still there. Smoking just makes me feel "better" if I'm feeling icky, and I don't really need to get high anymore. Actually I try not to get high at all, which is easy because my tolerance is pretty strong these days. It's great =)

Anyway, I hope you guys found my little adventure interesting! I haven't been to the dispensary by myself yet, hopefully they are just as informative and professional as this doctor I saw. I'm glad I did it! It's just one more step for me towards being independent (as opposed to being reliant on my ex).

----------------------------------------------------------------------

The topic can be found here:

http://dinet.ipbhost.com/index.php?showtopic=13501

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Excellent information, thanks very much, unfortunately here in Australia there is no marijuana clinics, as far as I know its all illegal so its harder to get the medical variety as opposed to street, I envy the the United States for their system.

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My state (NJ) just passed a medical marijuana bill today... not sure if it would help me with nausea and pain... didn't seem to do anything helpful for me when I was in Amsterdam many years back.

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I would use it without fear if I thought that it helped. In my case it was one of the worst triggers Ive encountered. ive smoked it maybe three times since I got POTS - usually given to me by a friend seeing it if will help. It did help once but usually it makes all the hyper symptoms much worse and I got hypothermia at one stage.

Ive read later that weed messes with your nitric oxide levels or sends you into hypothermia when your nitric oxide levels are abnormal. Since nitric oxide is the chemical that controls vasodilation but it has many roles.

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Thanks for all the information, but I would really like to know from those of you who had bad reactions how much you actually had before it made you feel horrible, this is really important information for me so I know wether it only takes 1 puff to end up feeling horrible or several puffs because if i can figure out that nothing bad will happen from a single inhalation then that would be a great start to managing and controlling the reaction.

cheers

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I used to, before I started having really bad POTS symptoms, smoke pot recreationally on a fairly regular basis with fairly little bad side-effects. But since my symptoms started worsening, the few times that I have smoked it, I have nearly passed out (the vision problems, ear ringing, tingling over my whole body... etc) and have generally felt like crap the next day and have had to sleep alot, so I won't use it again. I do wish I lived in a medical marijuana state, because I wouldn't mind trying an Indica strain of pot to see if it would help the symptoms, but I can fully attest that the Sativa makes it 100 x's worse.

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I also agree about the strains theres no way I'd attempt to try Sativa that put me in the hospital for 7 hours with HR 150 resting and nothing would help bring it down!!!! and my mouth was like GLUE ,felt like my body was completely shutting down but RACING at the same time. I thought I was honestly going to die that day...Haven't tried anything else since then but I use to be a reg. smoker and only had a few bad times and that was back in the 90's and early 2000, POT was different then. I don't have a clue what they exactly use for medical Mary Jane? But if it was indica I'd give that a try just for increasing appetite and sleep.

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Guest tearose

I want more oxygen in my brain. I could not bear to breath in anything like a cigarette or pot!!

I don't want to add the spacey feeling of a drug.

I think meditation is a great way to get high and it costs less too.

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Tearose--You don't have to smoke cannabis. You can ingest it. The "indica" form of marajuana is what you'd want. There are plenty of hybrids and other strains out there (sativa is probably the worst) that will make you high--increase your pulse etc. Advice is never buy street cannabis if you have dyautonomia. If you live in a legal medical marijuana state you can get the indica in the form of a thick, tarry, oil. It comes in a syringe and you place an amount about the size of a grain of rice on a vitamin or any other pill you may take and swallow it. Absolutely no head "high". It provides pain relief, especially to the nerves in the head, neck and spine. A side effect is it'll put you to sleep! Another way to take marijuana without burning it, is through a vaporizor. By using water vapor (it's heated to 350 degrees in order to extract the THC oil from the buds) you have no smoke--it's like an asthma treatment. I live in a legal state. The regulations are strict. You must bring in medical records from the past 6 months that document a legal reason to take the drug. You are advised by a MD, NP, or PA. I hear in Calif. though, dandruff is a condition!!! The marijuana "dispensaries" here are staffed by folks who are knowledgable about what strains help what medical conditions. Hope this clears up a few questions and misnomers about the drug. Oh and please--remember in some states it's LEGAL. I was a marijuana "virgin" until last Saturday. I grew up in San Francisco in the 60's and never smoked. Just wasn't interested. I have severe pain in my thoracic spine. I got relief Saturday night without other pain meds. I also slept undisturbed for 11 hours. Wonderful! I was VERY happy...and I don't have to worry about lung cancer on top of everything else! And thanks Firewatcher for bumping this thread!

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Guest tearose

Thank you for clarifying that.

It is more information than I ever had on the topic!

I think I am better sticking to "green leafy" in the form of spinach however... :huh:

I am sorry you have the depth of pain that requires such interventions.

May you find a treatment that offers you relief and no bad side effects.

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So I recently tried canabis because my doctor was out of options I went to a despencery in Colorado where I currently live and got pills with the ratio of 15:1 for cbd to thc

you don't get high, just a bit drozy, my pain went from a daily 8 out of ten to a 4/5 out of ten which I didn't believe was possible. I have also had increased tolerance when standing! My family also says that I seem more awake and present, I feel like I still have brain fog but it's a different type I don't really know how to describe it, but it's  definitely  a type that I can function better with even though it's taking some time to get  used to it. I've been doing this for three weeks and I am causiously optimistic 

good luck 

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On 12-1-2010 at 3:16 AM, MightyMouse said:

My state (NJ) just passed a medical marijuana bill today... not sure if it would help me with nausea and pain... didn't seem to do anything helpful for me when I was in Amsterdam many years back.

I have been struggling with POTS and EDS Type 3 since August 2016. Since then, I have lost 55 pounds (I am 24 and always been healthy) due to my excruciating and relentless nausea. The ONLY medicine I have been able to find to 'fix' my nausea is marijuana. I have spoken to multiple doctors at my POTS clinic, and they told me that over the last 30 years, marijuana is one of the only drugs that has helped people with chronic pain and nausea due to disautonomnia. If it weren't for it, I would definitely be taking opioids for pain and have a feeding tube inserted into my stomach.  

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If your looking into pot for your pots I suggest looking into terpenes and cannabinoids. Most users don’t know what a terpene is, but depending on what terpenes and cannabinoids are in it can help with your pots. That’s why you could try a strain and it won’t help with your problems cause it doesn’t have the right terpenes in it.

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i was recently put on miranol which is a synthetic canabanoid for pots from  my dr at johns hopkins for its supposed ability to calm and relax pots patients being that one of my complaints and many complaints of pots patients is the physical anxiety that comes along with this dysautonomia condition.  I took one pill. one stinking pill at 2.5mg and within an hour i couldnt speak and whole body was completely numb. pulse was 150 sitting and I was having palpitations and could not move my arms. my wife called 911 and i was rushed to the ER feeling super weird and like i was going to die. it made me feel worse than any pots flare ive ever had times about a hundred. i got to the ER and my pulse was 120 and still had all of the same feelings. they gave me benadryl iv and solumedrol. ekg showed sinus tachycardia and all labs were normal. maybe my body is just allergic to this drug or very sensitive to it. I will never take it again or anything like it. I am a physician assistant and I thought that I was having a stroke based on my symptoms. my dr said that many patients benefit from this drug so I believe that in my case I am just hypersensitive to it. I am not at all saying dont do it but just careful and make sure you take first dose when you dont plan to drive and have someone around for several hours after in the event that you have a similar reaction. God bless all my fellow POTS patients and Merry Christmas! i pray for healing for us all and continued perseverance. - joe

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I have been considering pot aswell but I was looking more into the oil instead of smoking. 

I’m also from Australia and it’s still illegal here. 

Ive just been approved for midodrine through the special access scheme and was wondering do you know if you can get pot through the special access scheme? 

I’m still on new to this as I only got diagnosed in August and no medication is working for me and I don’t know what to do anymore and I thought maybe pot might help??

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