Weird Observation

[ramakentesh]

A doctor familiar with POTS recently suggested to me in an email that some of the anecdotle conclusions he has found with POTS patients - particularly those that suffered an onset of their symptoms (either abruptly or insideously) never seem to be smokers and never live at altitude.

What do people here think of either of these comments?

[potsgirl]

I smoked from about the age of 20-30, so I guess I would say I'm skeptical! Be interesting to see what others have to say...

Peace,

Potsgirl

[all4family]

I don't smoke, and never have, but I live at a high alttitude, and wonder if that in part makes my breathing symptoms worse.

Suzy

[Maxine]

I smoked 15 years, and quit in 1990. Smoking aggravated my POTs symptoms, and caused tachycardia to be worse.

However, I know two people who smoke still, and they say it helps with the the low BP. Nicotine is a vasoconstrictor and some people claim it helps thier POTS, BUT it causes all kinds of other diseases-------------one BIG ONE would be CANCER.

"vasoconstrictor

noun

any agent that causes a narrowing of an opening of a blood vessel: cold or stress or nicotine or epinephrine or norepinephrine or angiotensin or vasopressin or certain drugs; maintains or increases blood pressure. "

I'm glad I quit, as I know how difficult it is to quit for some people.

Even though my POTS seemed like a sudden onset, I was born with the EDS, and apparently my POTS s secondary to that.

I think that doctor has a lot more research to do, as this information seems misleading.

Maxine :0)

[futurehope]

A doctor familiar with POTS recently suggested to me in an email that some of the anecdotle conclusions he has found with POTS patients - particularly those that suffered an onset of their symptoms (either abruptly or insideously) never seem to be smokers and never live at altitude.

What do people here think of either of these comments?

First of all, when a doctor asks if you smoke, he usually means "do you currently smoke? So, I do not know if your doctor meant the person never, ever smoked, or that they do not currently smoke?

I smoked off and on, intermittantly, in college. Anecdotal evidence needs to be tested. Other than that, let's see what others say.

[yogini]

I think there are several people who do smoke, as people post about it from time to time. You can do a search through old posts. I think anecdotal evidence is just that, and not scientific.

Smoking is very taxing on the body and and the cardiovascular system, and I think any benefits to POTS would outweigh the risks. There are other more healthy ways to boost your BP.

[MelissaCrystal]

I used to try to smoke, but I'd feel really sick afterwards. I had a mysterious bout of throwing up that landed me in the hospital after smoking hooka.

But smoking medical stuff is magical for my nausea, though I don't like being high. One little puff cures it though---it really is amazing. I have a license.

[Maxine]

Melissa,

Back in my party days marijuana made me paranoid, but dumb old me smoked it anyway----we were all a bunch of party heads back in the 70s, and early 80s----- . However, after I grew up and got away from it I tried to smoke once, and it made me have real serious tachycardia. NOT a good thing for POTS at all. They gave my brother marinol for his nausea that came with his chemo treatments. I could never really smoke a lot of it. My brother would have the same reaction----tachy, and paranoia. Once his heat rate got so high he went to the ER, and they had trouble getting it back under control.

Any bad effects wore off quickly for me---- However, some people aren't as fortunate. I see so many terrible side affects from anti-depressants in some POTs people, as well as some of the other drugs docs like to prescribe------i.e. anti-psychotics. How many of you had this experience, when docs thought you were nuts and tried to prescribe anti-psychotics? Marijuana gave me unpleasant side effects back then also, but some of the drugs prescribed by docs for my POTs symptoms were worse---(I'm talking about doctors who viewed me as nuts, and didn't know about POTS). Once I was given anti-nausea drug that cause me to hallucinate for several hours--it was horrible. I say this because some docs may try to blame past partying as the cause of my ANS dysfunction. Any doctors that I saw who are experienced in dysautonomia did not think my past partying caused my POTS. I hope I didn't have any permanant lung damage from any of the smoking I did. Right now I have slight shadow/scarring, and pulminary doc thinks it's from past bouts of bronchitis.

Here's information on marinol:

http://www.usdoj.gov/dea/ongoing/marinol.html

Maxine :0)

[ana_22]

i quit 2 years before the onset of POTS. I tried M a couple of times, the last time i tried it was 5 years before i got POTS it left me seriously tachycardic....i wanted to go to the ER but i knew it was from M so just waited it out and slept it off....after then never again!

[MelissaCrystal]

Melissa,

Back in my party days marijuana made me paranoid, but dumb old me smoked it anyway----we were all a bunch of party heads back in the 70s, and early 80s----- . However, after I grew up and got away from it I tried to smoke once, and it made me have real serious tachycardia. NOT a good thing for POTS at all. They gave my brother marinol for his nausea that came with his chemo treatments. I could never really smoke a lot of it. My brother would have the same reaction----tachy, and paranoia. Once his heat rate got so high he went to the ER, and they had trouble getting it back under control.

Maxine :0)

I want to add that the different strains of marijuana are quite fascinating, because most of the cheaper strains do the same exact thing! I feel like I can't breathe, my heart speeds up, it gives me insomnia, etc. It's horrible. I didn't like it for 4 years before revisiting it again (my boyfriend also has a license and I've been with him for 5 years). When I tried it again, he had me try Purple Kush, and then I tried some expensive hash. It's like magic. The hash is very powerful, I only take one puff from the vaporizer and I'm good. It puts me to sleep like magic. The Purple Kush is a little funny----I haven't tried other strains like it yet so I don't know what would be better, but the kush cures my nausea instantly and it's manageable to be on. There's a little bit of stuff that happens, like my concentration and thinking really goes to crap if I smoke too much, but it's worth it when I crash in the evenings. It prevents the crash from getting real bad.

I think in a couple of years, marijuana will be treated more as a medicine and there will be a LOT more information out there about the medicinal purposes of certain strains. One strain is a HUGE difference from another---unfortunately in price, too. Government regulated pot is very clean though, very pure. You can't always trust what is on the streets--never will, never have. It's definitely worth it for me to pay a little extra, especially when my doc is being stubborn about prescribing me anti-nausea drugs. She thinks they are dangerous for someone young like me.

Unfortunately, my doc just refuses to put me on any anti-nausea drugs. It's kind of frustrating, but she really believes that trying to control my other symptoms first will make it go away. It hasn't happened yet. She's actually told me too that pot might be a better thing to stick with. It's just too bad insurance doesn't cover it.

About marinol, I had never heard of that. If it's anything like the THC pills they give at the medical pot places, then I already know I wouldn't like it. The body-high that edibles give me are kind of scary. They definitely effect my nervous system---like most of the other stuff, but certain strains are better. I'm not sure if it's the THC I like---there are many other elements of marijuana that get you high and that have an affect on your system, it's not just THC. So I'm curious about what's in that pill, exactly.

[Jordan5815]

I smoked for 3-4 years and also lived in denver colorado for 1 year = mile above sea level, so I don't know about that info.

[ramakentesh]

I think the smoking thing was just some BS that he threw out there into his email. I dont think there is anything to it. I dont smoke and never have but the guy I met who has POTS in my area smokes still.

Even though my POTS seemed like a sudden onset, I was born with the EDS, and apparently my POTS s secondary to that.

I think that doctor has a lot more research to do, as this information seems misleading.

the link between POTS and EDS is interesting. Most doctors ASSUMED that its caused by overelastic venous beds, but Dr Julian Stewart found that EDS patients have blunted pooling in their stomach area rather than excessive pooling from overly stretchy veins. The form of POTs associated with EDS is the normal flow variety; the patient is normal while supine generally, but suffers excessive peripheral vasonconstriction on standing and blood pooling almost exclusively in the stomach. I believe a medication called octeriode or something like that is being tested to reduce nitric oxide levels in the stomach veins to reduce pooiling. WIll be interesting to see how that goes.

As for marijuana. I smoked a few times when i was heaps younger and it never did anything nasty to me. But after I developed POTS my friend decided to give me a joint to see if the 'medical marijuana did its trick.'

It brought on one of the worst POTS attacks ive ever had - dizzy as, trembling, feeling cold and heart pounding. It certainly didnt help me at ALL! That being said a beer sometimes helps a lot for me - it doesnt seem to cause problems with excessive pooling so i think my POTs variety is from excessive constriction rather than excessive peripheral dilation (low flow, rather than high flow POTS)

[extern14]

That's really strange. I was just diagnosed with POTS about two months ago. I haven't smoked marijuana in over a year but prior to that I smoked for three years. Those were the best three years. My POTS seemed to be almost non existent. I wasn't dizzy, had no nausea, no headaches, little stress, and I could actually get a good night's sleep. Unfortunately, we have random testing at work so I had to give it up and I live in a state where it is not legal to dispense even for medical purposes. I guess just like with everything else, it works differently for some. It is the best "medicine" I have found so far and really wish I could continue.

[bjt22]

I've found it to be rather opposite....smokers are over represented in the largish group of people with POTS/NCS that I've known. I've always felt that we were self medicating.

[mae]

I'm a smoker have been for 12 years I wanna quit thats my next mission.

Mae

[Kitsakatsa]

I live at high altitude. I definately feel better at lower. When I go to even higher altitude, I feel worse within a few hours. It would seem that more complaints come from higher altitude people if it makes POTS worse...

[ramakentesh]

true - and nitric oxide - which is the premium vasodilating molecule in our blood vessels increases the higher altitude we go to. So it might be good for the subset of patients with low nitric oxide, but make the majority of us worse.

[Darlene]

I was a smoker at the time of my diagnosis, but quit not long after because smoking worsened my POTS symptoms.

[kitchmill]

I smoke occasionally, and have since I was in high school. But my POTS had nothing to do with this, since I remember my first blackout when I was about 8 or 10. I do find that sometimes the smoking seems to help my symptoms, but I also know that I need to quit. It's on my list...

[Sophia3]

Nicotine patches have been helpful to some patients with CFS which we now know is often O.I. based. Nicotine is a constrictor which we need.

YEARS ago a girl in an egroups smoked and it HELPED her..she was a fainter and smoked like, I forget 6-8 cigs a day. She knew it was a bad habit but it helped her stand up and keep her BP boosted.

I also remember I had a situation 8 years ago where my ANS doc said nicotine would help but did not want me to smoke and knew the patches were to expensive to even try! and he was only half kidding..but if you know about constrictors as opposed to vasodilators, you get the example.

[Dizzysillyak]

Article on how smoking curbs mast cell activation ... So the next time I get around dust, I'll just smoke a few cigarrettes ...

http://www.allergizer.com/