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Hello all...

I just had to use that POTSies on POT phrase that my friend coined when she heard my doc suggested I try Marinol...

I did a search but really did not find much at all about anyone taking this med.

I will be trying it at the 5 mg dose at bedtime to help with sleep, pain and anxiety.

Typically it is used for nausea and vomiting...but this isn't what I will be using it for.

I was just wondering if anyone had any experiences with it? Did you have increased dizziness or hypotension? Or any other of the goofy side effects like giddiness and euphoria!?

I am already taking quite a lot of meds that make me sleepy...but am hoping this will not really compound their effects, as it works differently...

Wish me luck on this one! I'm the first person that the pharmacist has ever dispensed this to and my PCP hadn't had anyone on it before! My POTS doc wants me to try it b/c so far, NOTHING has really worked to improve my symptoms! I just love being a guinea pig!

Later alligators from you soon to be POTSpal on POT...

Emily

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Hey emily,

My boyfriend recreationally smokes pot, and when I first fell ill, I tried some. I thought it would help with the headaches etc. Well, it was a BAD idea.

I'd never smoked pot before so I didn't know what to expect. It made me twice as dizzy as normal, and I felt like I was in the process of passing out...for about three hours. It was miserable!!!

Now I can't even stand the smell of it (I think I was actually traumatized by the experience).

You may not have the same experience. And Marinol is probably more controlled. But be careful.

Just thought I'd share...

Lauren B)

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Hi guys, marijuana has the potential to cause tachycardia and hypotension in people so could make people with POTs feel pretty yuck! That would explain your increased dizziness and faint feelings Lauren!

Emily, the tachycardia and hypotension are possible side effects of the marinol as well, so be aware of that when you first start out. However, Marinol is a controlled dose unlike smoking pot, so you should have less adverse reactions with that than you could with smoking. If you need to get up in the night for the bathroom, please go extra slow when you first get up! You might not experience the side effects at all, but you need to be aware of them so you don't end up hurting yourself! :)

As with any med, you might have some side effects for the first week or so, then things may settle down. If the side effects are managable, try to keep at it for a while. It might really help your system to slow down and get you on the way to feeling better! Laura

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I took care of a nun on marinol who had really bad parkinsons. It helped her a lot and she wasn't high or anything. She had less side effects from it than any of her other drugs. Good luck. And like everyone said, marinol is much more controlled than pot. No gross smell either...not that I've ever smelled it...actually didn't do drugs, but everyone knows someone that did or does...morgan

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well now this is an interesting topic..

emily I hope that this helps you feel better..

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Yup, dizzygirl, I like to keep things interesting. My pharmacist was like, hey we've never dispensed this before! Oh my...

Thank you all for your posts...I knew you'd come through for me. I am most nervous about it dropping my bp too much so that I have one of my horrible 'spells/autonomic storms'--with the shakes, too sick to sleep, etc.

I have an adjustable bed, so sometimes when it gets like this I have to put the feet higher than my head and just wait it out...

We'll see...maybe I'll get lucky and get the side effects of giddiness and euphoria! That'd be a hoot. My dad will be 'on duty' the first night I try this med...he'll find it entertaining! That's better than him having to hold me to try to settle the shakes...

Okay, rambling b/c I can't sleep...

emily

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Ok em.. i really hope that this mmed helps you.. and am glad that your dad is going to be around for your first dose..

now have some snacks around in case you get the "munchies" LOL.. just kidding!! :)

I hope that you are able to get some sleep tonight... sweet dreams emily..

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Hi Emily!

hope you did get some sleep last night! I was wondering, does this Marinol goes in tablets???? (I've never heard of it). Well I hope it does wonders on you because you really need some well deserved sleep! When are you starting it?

Corina :)

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I am sitting on some marinol right now. I have had it for 3 weeks and have not gotten the guts up enough to take it yet . My doctor gave it to me for nausea since nothing else has worked for me. I did experiment with marijuana a couple months back and I did NOT like the way it made me feel. Made my heart race really bad and my heart was also pounding so hard you could see my chest move. I had two hours of H**** but then after that it did cut the nausea. But it was not worth it. SO my husband asked my GI Doc what he felt about marijuana used for medicinal purposes so he prescribed me the marinol. I am just afraid to take it since it still has thc in it and I don't want to have a bad reaction. That scares me. So when you do take yours please report back if you would. I would love to hear how you did with it.

Corina (hopeful-girl)

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corina,

the marinol should not be nearly as potent as marijuana...it IS the THC from marijuana, but that is the part that they wanted to use.

supposedly we produce this enzyme naturally and some people don't make it or make the right amount of it....

something like that....grrrrr...my POTS doc explained it to me in super duper detail and all the studies out on it, but it was a bit over my head! sorry!

anyways, what dose is yours? mine is the 5 mg dose. and i haven't gotten up the guts to try it yet either!

later alligator!

oh, i do feel pretty good about trying this med though b/c i have been so refractory and had such bad reactions to meds that i know my POTS doc is so super careful with me, i know he wouldn't prescribe it if he felt it would be sooo powerful that i wouldn't be able to wait out the symptoms...

okay, gotta go to bed!

emily

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Emily

Good luck with the marinol!! I asked my doc about it last year but it was SUPER EXPENSIVE!! hundreds of dollars...at least whatever one month supply he typed in on the blackberry or whatever his gizmo was called.

SO I told him what if I could find some to smoke. He smiled. I said "can I try it with your blessing". He laughed and said "no, it's illegal". I said "ok, but I am going to try it OK. I want you to be aware." he said ok and just grinned!!.

Did you take it at bedtime? the reason I ask is when I tried to smoke at bedtime, it keeps me AWAKE!!

My sister found a 'head shop' from a shamanic counselor friend. This person at the head shop was MARVELOUS.

She told my sister she KNOWS of a doc that will prescribe "medical marijuana" like they get in calif....to smoke.

Anyway, my sister told this person about my situation. She said to only use a glass pipe and tiny propane lighter for purest 'dose'. smoking a cigarette was nasty, harsh and made folks cough. A pipe, you can control it, and just take a few hits. She was right. A cig was GROSS and the smell. Tiny amount of smoke with pipe. But you still want to do it in garage or walk in closet...but just a little bit so you dont smell up clothes. so I am coming out of the closet to share this....

Unfortunately, due to my vision, reading glasses and far away glasses made lighting this pipe scarey!! It was in between the two lenses .

I used the ENTIRE LIGHTER trying to smoke on a few different occassions before using matches, lol. I couldn't see over the pipe(blurry) and holding it farther away, it would light quickly and easily!! Matches taste dirty but i did help my nausea A LOT!!!! AND restored my appetite. It just takes a few tokes. I only used it a few times and have some on stand by. This clean lighter fuel I used up practicing the darn stuff. But the pipe is a pretty green color!

I wanted to email an old neighbor- married to a policeman, who is now a detective and ask about the laws, and fines!! He gave them in detail (this was months ago) and said to just KEEP IT IN THE HOUSE!!

I thought having a pipe would put me in crack head territory but he said that is a different glass pipe.

Anyway, the smoke method works on the budget plan if you can get a 'clean smoke'. The herb was a gift.

The woman at the head shop gave my sister a free lighter and discount on the glass pipe due to my illness. My sister got the pipe for me but left the sticker on!! Pricey gadget...$44. BUT my sister DID NOT use the word Dysautonomia.

I heard the tablet form helps lots of people and others benefit better from the smoke. Especially we older people due to stomach and how it digests and absorbs things. I don't know if the intrinsic factor is involved but I would take the marinol in a heartbeat if I could afford it.

Let us know if it helps...with sleep...with appetite. With anything. Good luck.

P.S. I wasn't going to post this but what the heck. I wasn't paranoid but you never know.

1.gif

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Hi Emily and thank you for chatting with me. Ijsut went and got mine. It is a 2.5 does andit is in a liquid gel cap. Ok well since it is a low dose. maybe I will give it a shot when my husband is home. He works such long hours. I really hate trying a med by myself just incase ya know *giggle*

I need to just quit procrastinating and just try it. I really do need some thing that helps with my dibilitating nausea. I a mean my nausea is so bad if we go on long car rides I have to take a bucket. There have been many times i have had to pull over to the side of the road and thorw up which is quite embarrassing. So if this would work thatn it owuld be OH so worth it.

Thaks for your responce. I do hope it works for you too!

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The nun I was taking care of , actually used it for severe nausea secondary to her parkinson's, and that's what it helped. She was wheelchair bound but remained active till her last breath. I didn't even know what it was. I think it can be very helpful for some, but like any drug we are all different. I sit on pills forever, because I'm so afraid to try anything new, it's awful. Except the macrobid with the recent urinary tract infection I got from the catheter in the hospital. I would have taken anything to get rid of that bugger....They are talking bb's again, so I will try them again. Ay least I know what they do to me...morgan

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Hi Morgan. WOW your like me when it comes to the meds. I have sat on this marinol for amonth now LOL But I am going to take it for sure this week. Just like i am also sitting on some amitrityline for FIBRO. It really uscks being so sensitive to meds doesn;t it? I hate it!

About 4 months ago I went in to get rehyrdrated. This was before the j-tube was placed or before i had TPN. So am I am the er My stomach is killing me I had a bout of heaves and couldn't stop throwing up. So they gave me 2 bags of saline and they started to give me Zofran and I was like AH wait a minute. She just stared at me. I told he to justs tart me out at hald the dose. Ya know what? She had a probl;em with that and told me know. Of course I enede up winningthat one. So they decided to give me pepcid in a bag thinking it will help my stomach pain. I had NOT complained about acid or heart burn or any thing. After the pepcid bag was almost empty. I GOT the worst heartburn and I got really shakey and anxiuous feeling and really felt like I was going to puke. I was so HOT but yet I was SO cold! I told the nurse and she just looked at me weird. She did agee I evem looked more pale but she was a B***** anyways. SO they gave me ativan and that helped a little. But it took 6 hours for that affect to wear off. But I hated the feeling and I went there to get better NOT worse ;-).

What happens to you Moragan with meds?

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Well, hate to tell you this one, but amitryptylline (sp, elavil is easier to spell) gave me major tachycardia. HOWEVER, I was taking a very high dose. It also put some pounds on, which you could use.

Phenergren gave me seizures. Antidepressants made me paranoid. And I had pepcid IV once and it made me feel like you. Diuretics give me major drops in potassium, and svt, and I could go on and on. It's not allergic reactions, just major sensitivities. I never know how I'm going to react. It's really the only thing that makes me feel anxiety besides the dentist. Trying new drugs.

They want to try beta blockers again and that's okay. I am already so fatigued all the time, what's a little more? They make me really sluggish, but I am hoping for a very small dose. Even my primary hates to give me drugs. He'll give me some samples and say, chop this into miniscule bits and take one of those.. :( I think he's even more nervous than me...Which is kinda nice because he's not pushing stuff on me all the time and then getting mad because I'm too chicken to take it. brk brk those are chicken sounds for all you uninformed folks out there.

I am off to get my esophagus dilated, oh happy day, I mean it. Talk about choking on everything. It's way overdue and I feel so much better for about 2 months. bye tightsqueezemorgan

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well, the verdict is no marinol for me for while...after all of that! sorry guys! you'll have to wait to see 'dancinglight on pot!'...

i heard from my POTS doc today and since i am such a mess trying to figure out the Cymbalta right now, we don't want to add another med/variable into the mix...

but, i'll let you know when/if i do try it...i've got the darned bottle of it in my fridge!

off to nap...

it is SNOWING here today!

emily

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Emily

I didn't know you had started another new med recently. I understand waiting to try the marinol. That THC stuff sure can help nausea and appetite. I got so my long time aid, ginger root tea and capsules were not working.

My nephew's wife was just asking me about the Cymbalta. Good luck.

I LOVE SNOW as well.

19.gif

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  • 1 month later...

Nope, no luck with the Marinol for me...

I took the 5 mg dose and was so dizzy and hypotensive and tachycardic on it I was up sick all night and couldn't sleep. It did wonders for the pain, but otherwise I felt extra-crummy.

I did it three nights, but my POTS doc was uncertain whether 'waiting it out' would be worth it. He wasn't sure the side effects would lessen. Which is congruent with what little I know about Marijuana...

BTW, Marinol is not the same as taking/smoking POT--it is derived from Marijuana but should have less of the nasty side effects (should being the operative word for me!)...

It is supposed to help with pain, nausea, appetite, sleep and anxiety (according to my POTS doc)...He was very excited about it and felt that it was worth a shot and low on toxicity.

I was pretty excited about it too! But, it didn't work! :)

Emily

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Guest Julia59

Emily---i'm sorry the marinol didn't work for you. I would think it would have less side affects as it is more refined then the pure form of marijuana.

Unfortunately I was introduced to it as a young woman---about 15---and I smoked it a good long time. However, I was never able to handle heavy amounts of it---I was a lightweight as they called it in those days---70s-80s. My expereince with it was that it sometimes made me paranoid---and gave me tachycardia.

As I grew up and moved on I didn't care for it---and didn't miss it. One time I tried it years later---and had pounding heart and tachycardia. This was about a year before my POTs crash.

To me the drug felt like a stimulant---but also caused a buzz. I never got the "munchies" in fact it was the opposite. I didn't always get a bad reaction.

I would think the marinol would be more helpful with patients with ANS failure---like PAF---or MSA--or the non-hyperadrengic form of POTS.

I would never think it would help with anxiety----when one of the side affects was paranoia---but then again I was smoking it---and it wasn't the same I imagine. However---it did make things more interesting---I can't complain there---but as time went on it just wasn't worth the chance of having a bad reaction.

Oh Sophia---I had to laugh about the little pipe---I was one that preferred joints---I felt more in control of the hit----and could only handle a couple............ :(

On a positive note I would think of this drug as a lot less toxic to use then many of the other drugs that are pushed on us, especially some of the anti-depressents.

I wish it would have worked for you Emily. I hope they can find something else to help your symptoms.

It's ironic that I am so afraied to try new drugs, given my wild past---and drug dabbling.....not proud of that...wished I would have made better choices........

Julie :0)

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