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Please don't judge need advice


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Hi so I have POTS/EDS and I started smoking not to long ago and I really enjoyed it and it made my symptoms go down and everything felt way better. I only smoke when I feel at my worst with my symptoms and it helps me manage. I know smoking is bad so I want to switch to a non nicotine vape or one with a really low content. I'm going to talk to my doctors but what do you guys think?

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Along those same lines... don't judge my response please.

You probably did feel better. I think nicotine works on specific neurotransmitters. I think I remember reading something about that in Dr. David Goldstein's Dysautonomia book.

I found this explanation on Wikipedia. 

Nicotinic acetylcholine receptor

Nicotinic acetylcholine receptors, or nAChRs, are receptor proteins that respond to the neurotransmitter acetylcholine. Nicotinic receptors also respond to drugs, including the nicotinic receptor agonist nicotine. They are found in the central and peripheral nervous system, muscle, and many other tissues of many organisms, including humans. At the neuromuscular junction they are the primary receptor in muscle for motor nerve-muscle communication that controls muscle contraction. In the peripheral nervous system: (1) they transmit outgoing signals from the presynaptic to the postsynaptic cells within the sympathetic and parasympathetic nervous system, and (2) they are the receptors found on skeletal muscle that receive acetylcholine released to signal for muscular contraction. In the immune system, nAChRs regulate inflammatory processes and signal through distinct intracellular pathways.[1] In insects, the cholinergic system is limited to the central nervous system.[2]

The nicotinic receptors are consideredcholinergic receptors, since they respond to acetylcholine. Nicotinic receptors get their name from nicotine, which does not stimulate the muscarinic acetylcholine receptor, but instead selectively binds to the nicotinic receptor.[3][4][5] The muscarinic acetylcholine receptor likewise gets its name from a chemical that selectively attaches to that receptor — muscarine. Acetylcholine itself binds to both muscarinic and nicotinic acetylcholine receptors.

As ionotropic receptors, nAChRs are directly linked to ion channels. New evidence suggests that these receptors can also usesecond messengers (as metabotropic receptors do) in some cases.[6] Nicotinic acetylcholine receptors are the best-studied of the ionotropic receptors.[3]

Since nicotinic receptors help transmit outgoing signals for the sympathetic and parasympathetic systems, nicotinic receptor antagonists such as hexamethonium interfere with the transmission of these signals. Thus, for example, nicotinic receptor antagonists interfere with the baroreflex that normally corrects changes in blood pressure by sympathetic and parasympathetic stimulation of the heart.

 

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I don't think is necessarily a judgement as I'm sure you're aware of the repercussions of smoking.  But seriously consider what you're doing to your already struggling body. Cigarettes also affect your blood pressure and if you have regular pots that increase in blood pressure might help you alleviate your symptoms. But seriously, this is something you need to speak to your doctor about because no one here is going to condone smoking lol.

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No judgements here, chem. We're here to offer support and exchange resources and experiences. Here is a past thread that might help you. Glad your planning on talking to your Dr.,   Welcome to the forum 

 

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Do you get a similar result from caffeine? Caffeine works on similar neurotransmitters so I ended up adding caffeine back to my life.

I still get people who like to lecture to me on the evils of caffeine and salt, but I usually try to ignore them. Occasionally, I have to engage the more militant ones.

I feel like I am having you try out all of the vices.... like I am a bad influence. Your mom is never going to let you hang out with me again. :D

Kim

 

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42 minutes ago, KiminOrlando said:

Your mom is never going to let you hang out with me again. :D

Kim

 

LOL!  Laughed so hard when I read that.  Caffeine is my "vice".  I function so much better with the vasoconstriction from it!  Smoking though, the other effects are really scary to me.  I hope your doctor can help you find a safer treatment to give you some relief of symptoms.  I think it's important to know that smoking does help you feel better, hopefully there's something that helps you but doesn't shorten your life span. Nicotine gum is safer, right?

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This is a syndrome where everyone is unique in their symptoms and how they react to various drugs, therapies and coping mechanisms. Whatever brings you relief is gonna do it for you, some people may or may not like what you do but they are not you. So, smoke 'em if you got 'em. I just turned on the keurig.

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2 hours ago, DizzyGirls said:

Thanks for the laugh, Kim!!  Hurray for caffeine!  Works well for us, too!  Actually buy straight caffeine bottles (16oz.).  Vasoconstrictors help us a lot. 

What are straight caffeine bottles? What is this product, brand?

 

 

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Dizzy, Is it like those MIO energy drops? Hubs gets them to add to hist water bottles for a pick-me-up at work. I tried them and meh, kinda like bug juice and I don't notice the 'rush'.

 

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I would smoke if I thought it would help me and I could tolerate smoking.  

As with any medication, you have to weigh the pros with the cons. 

Smoking raises blood pressure, and reduces pain.  I considered it when nothing else was working.

Honestly, the side effects of some of the meds I take are scarier than smoking, especially if you are not a heavy smoker. 

Perhaps doctors don't recommend it to us, even though it might help, because they would get their medical license taken away for prescribing it. 

 

 

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There's no flavoring or sweeteners in it.  You can buy one with Stevia, but my girls don't tolerate the artificial sugars.  It's just concentrated caffeine in a 16 oz bottle.  I'm not sure what the caffeine source is, though (I might contact them and ask).  They squirt a few drops in when they feel like a little caffeine, but not so much that you are zippin'!  This is so they can add it to a VitaminWater that doesn't come caffeinated or something else other than sodas.  The fizzies get to be too much and it's nice to have water sometimes.  I've never tried the other kinds of drops, but my youngest said that it doesn't bother her stomach as sometimes coffee would.  Hope this help!

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I agree with what some of the others said about salt and caffeine. Try to exhaust all other options first before turning to nicotine. Compression leggings, a gallon of water, a crap ton of ramen... caffeine.... prescription medication.... all of those are better options. 

 

One of the most terrifying ways to die is by suffocation and that's basically what having COPD is. Don't do it. 

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For all of you using cafine for the vasoconstriction aspect . Is the caffeine affecting your heart rate or making you more tachy? I've been curious about trying this but don't need the tachy....

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1 hour ago, Bladerunner said:

For all of you using cafine for the vasoconstriction aspect . Is the caffeine affecting your heart rate or making you more tachy? I've been curious about trying this but don't need the tachy....

200 mg caffeine in the morning, taken in a pill, does not increase my 24 hour average resting heart rate as calculated by Fitbit.  It decreases my orthostatic tachycardia.  I still have blood pooling, but more gradual onset, with standing/walking/shopping. When I am on my feet with errands etc, I often have additional 100 - 200 mg of caffeine in the afternoon for more boost - but that will interfere with my sleep.

When I was in college and had to function in the morning I was taking 600 mg in the morning.  That was before I was aware of POTS, had no idea I ever have tachycardia.  I had some anxiety about 8 hours after a 600 mg dose though, so even if more caffeine = less POTS symptoms, the higher dose isn't worth it to me.

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For my daughters, it doesn't increase their heart rate.  That being said, we do not use it in high concentrations like you find in pill form.  There's no way they could handle that much.  They would go through the ceiling!  They would have severe ulcers, too.  For my girls, the pills are so hard on their stomachs.  We stick to getting it through drinks or the concentrated liquid caffeine at no more than a teaspoon (83 mg).

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What about experimenting with nicotine patch or gum so at least your not being exposed to the inherent risks of actually smoking but your still getting the beneficial nicotine effects? I remember watching videos of Driscoll where she briefly resorted to nicotine patches for some of her symptoms (along the lines that kimin..something was talking about w the wiki article). 

As for caffeine- it drops my heart rate. Only time I've been symptomatically Brady was after half a caffeine pill (plus my usual propranolol and adderall). It helps my HR but it doesn't help my anxiety-easily over whelmed potsy feelings. I'm currently taking about 1/4th of a caffeine pill a day.. 

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Darn !! Thought I had a good,medical reason to start smoking again !

My BFF used to use excedrin every morning for her caffeine boost some 20 years ago...it was aspirin, caffeine and something else if I remember it right. Unfortunately, since I had stomache issues, it burned the crap out of it so regular caffeine drinks had to do

Occasionally I still crave a smoke, but the vasoconstriction the nicotine does can affect the vascular response in the heart as well as the "vessels" so be careful.

Debbie

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