Smoking helps pots?

[Potsie1990]

I noticed every time I feel excruciatingly nauseous or start having a pots episode... if I have a cig I feel significantly better. I truly hate to admit it, but I can’t tolerate anything else. I’m really thinking about trying vaping more regularly to stabilize myself. 

I started liquid CBD oil from charlottes web also. Helps tremendously with my weakness and fatigue. Ativan helps too when I have a what is suspected to be a adrenergic storm. 

 

Do any any of you vape? I really hate that I’ve come to this but I really feel like we are all going to die anyway. Why suffer? I don’t have kids so I wouldn’t be putting anyone at risk other than myself and my husband who already smokes. 

Thank yoh 

[StayAtHomeMom]

Personally I smoke cigarettes ( I have for over 15 years) and I notice it helps some of my symptoms most of the time. That being said if you don't smoke I wouldn't pick it up. It is a nasty expensive habit that is hard to break. 

When I first got sick I was using an e-cigarette. But when my breathing issues started I thought it could be from my e-cig (I had just changed the delivery system and I was going through soooo much juice. I was smoking the equivalent of like 8 packs a day). I went back to regular cigarettes and was smoking very little. But like I told the doctors the cigarette would help. They looked at me like I was crazy and said that is what is causing your breathing issues. 

I have done some research and nicotine helps some people with POTS. It is a vasoconstrictor. (It is why smokers can handle standing outside in the cold for their cigarette). It is not a cure all. And it doesn't work all the time for me, probably because I am a addict. But it does do interesting things to the body. 

I would not recommend anyone picking up smoking (e-cigarette or otherwise) but if someone already smokes, e-cigarettes are a good alternative. 

[delise910]

Interesting.   I quit smoking in February.  Just cold turkey.  I'd had episodes I think before that and yes...if I smoked I felt better.  Since I quit what I believe is hyperandregic POTS has gotten much worse.  Much.  Also think the 20 pound weight gain didn't help my system.  

[Potsie1990]

Wow! See... I told my neurologist this and she was like it’s probably because it’s raising my blood pressure a bit or giving me just enough of a boost that I can function. 

I felt great when I smoked * very lightly* (like a few a week) back in 2016. I stopped in 2017 and boom. Extreme pots. 

Midodrine makes me violently sick. So does decongestants as I was told they have the same effect.

see, I knew I wasn’t crazy. But yes, I definitely wouldn’t recommend it to someone who hasn’t done it already.

my symptoms are the best when I’m on birth control and a bit of nicotine every now and then. I know it’s a deadly combo but based on my research the blood clot and stroke warning are for people who have high blood pressure and who smoke a pack a day. I’m no where near that, not even by a long shot. 

Sigh. Well, if it works, it works. Can’t tolerate caffeine either so I will take what I can get.

 

thanks for the responses 

[StayAtHomeMom]

16 minutes ago, Potsie1990 said:

Wow! See... I told my neurologist this and she was like it’s probably because it’s raising my blood pressure a bit or giving me just enough of a boost that I can function. 

I felt great when I smoked * very lightly* (like a few a week) back in 2016. I stopped in 2017 and boom. Extreme pots. 

Midodrine makes me violently sick. So does decongestants as I was told they have the same effect.

see, I knew I wasn’t crazy. But yes, I definitely wouldn’t recommend it to someone who hasn’t done it already.

my symptoms are the best when I’m on birth control and a bit of nicotine every now and then. I know it’s a deadly combo but based on my research the blood clot and stroke warning are for people who have high blood pressure and who smoke a pack a day. I’m no where near that, not even by a long shot. 

Sigh. Well, if it works, it works. Can’t tolerate caffeine either so I will take what I can get.

 

thanks for the responses 

Have you tried different things for the caffeine? I can do a certain amount of soda but no coffee. A bottle of Mt dew a day helps me considerably. 

[StayAtHomeMom]

2 hours ago, delise910 said:

Interesting.   I quit smoking in February.  Just cold turkey.  I'd had episodes I think before that and yes...if I smoked I felt better.  Since I quit what I believe is hyperandregic POTS has gotten much worse.  Much.  Also think the 20 pound weight gain didn't help my system.  

I am wondering if my weight gain hasn't made me a little worse. I gained about 30 lbs in the last year or so and I feel like the "little" symptoms are worse. Starting a diet soon to try a shed some of it. 

[Potsie1990]

23 minutes ago, StayAtHomeMom said:

Have you tried different things for the caffeine? I can do a certain amount of soda but no coffee. A bottle of Mt dew a day helps me considerably. 

You know, I think I’ll try that. Coffee or tea makes me really ill and zombie like, but I’d be interested on how I’d tolerate a soda. I do love and miss Mountain Dew lol I never got sick from them so it might help give a boost too.

and yes, when I stopped smoking (my husband switched to an e cig so I just kinda stopped without realizing it) I gained a bit a weight also. I’ve been trying to shed it but it’s that stubborn weight that is so hard to get off. 

You know, I got up today, checked my BP and it was 84/53 with a 107 pulse. Smoked a cigarette, 15 minutes and a smoothie later I’m at 113/73 with a 73 pulse. And.... I feel great. Still tired but not sick. 

Will try again in the afternoon and post my results. 

[StayAtHomeMom]

1 hour ago, Potsie1990 said:

You know, I think I’ll try that. Coffee or tea makes me really ill and zombie like, but I’d be interested on how I’d tolerate a soda. I do love and miss Mountain Dew lol I never got sick from them so it might help give a boost too.

and yes, when I stopped smoking (my husband switched to an e cig so I just kinda stopped without realizing it) I gained a bit a weight also. I’ve been trying to shed it but it’s that stubborn weight that is so hard to get off. 

You know, I got up today, checked my BP and it was 84/53 with a 107 pulse. Smoked a cigarette, 15 minutes and a smoothie later I’m at 113/73 with a 73 pulse. And.... I feel great. Still tired but not sick. 

Will try again in the afternoon and post my results. 

My mother in law is really heavy and I have watched her diet a few times over the years. Over the past year she has lost about 100lbs on the keto diet. She raves about it so I have decided to try it. It is very restrictive, but I feel better without carbs anyway so I figure it is worth a try. Spoke to my doctors and they are OK with me trying. Right now I am trying to find some supplements to prevent the keto flu (to me it looks like a POTS flare-up). I am looking forward to losing this weight. And I hope it will help my body feel better. I was not built for my extra weight. My PCP actually asked me earlier this year if I quit smoking because of all the weight I gained.

[Potsie1990]

7 hours ago, StayAtHomeMom said:

My mother in law is really heavy and I have watched her diet a few times over the years. Over the past year she has lost about 100lbs on the keto diet. She raves about it so I have decided to try it. It is very restrictive, but I feel better without carbs anyway so I figure it is worth a try. Spoke to my doctors and they are OK with me trying. Right now I am trying to find some supplements to prevent the keto flu (to me it looks like a POTS flare-up). I am looking forward to losing this weight. And I hope it will help my body feel better. I was not built for my extra weight. My PCP actually asked me earlier this year if I quit smoking because of all the weight I gained.

I have to say I’ve heard great things about keto. I was 80% vegetarian (except when I travelled or was at a fancy restaurant) many years for health reasons, and ranged from raw vegan at times to regular plant based. I did get a little worried about being high carb (I ate insane amounts of fruits and veggies) and always felt light and hydrated, but hungry and bloated. Lol 

Recently my primary asked me to try to eat a “normal diet” for a month and report how I feel. I looked into it a bit and found a lot of people do well on low carb/keto. I think the issue is keeping the weight off long term. I hated calorie counting and I felt it was so beyond restrictive and messed with my mind too much. 

I don’t have the guts to try full keto, but I will try lower carb. If you do well on it please let me know. The keto flu sounds a bit off putting. Lol definitely don’t want to add anymore symptoms to our list. 

And to report back on my Vape test. 

I vaped a few times all day, About half a cartridge. Used the Vuse Ciro Melon. 

FELT GREAT!!! Holy crap. Hit 119/80.

 

I have not seen this number is many months, if not a whole year.

i took my dogs for a walk on my own up hill and around my neighborhood today. Felt a touch tachy and woozy in the beginning (probably from the heat) but kept on going and eventually I worked through it. 

I was using a walker 3 days ago because I was so weak. I walked today completely on my own. No cane either! 

I squatted and stood up, I did not feel like I was going to pass out for once.

i am not lightheaded, weak, exhausted, short of breath, or in pain etc. I’m not nauseous, GI Tract is working well and no adrenaline surge (yet, although I get those at night and it’s just now 9pm)

I will try this for a week and report back. I’m scared today was too good to be true, but it was a great test because it was really hot today. I get really really sick in any type of heat and I even sweat a little! A touch but it’s better than not at all before 

 

[StayAtHomeMom]

9 hours ago, Potsie1990 said:

I have to say I’ve heard great things about keto. I was 80% vegetarian (except when I travelled or was at a fancy restaurant) many years for health reasons, and ranged from raw vegan at times to regular plant based. I did get a little worried about being high carb (I ate insane amounts of fruits and veggies) and always felt light and hydrated, but hungry and bloated. Lol 

Recently my primary asked me to try to eat a “normal diet” for a month and report how I feel. I looked into it a bit and found a lot of people do well on low carb/keto. I think the issue is keeping the weight off long term. I hated calorie counting and I felt it was so beyond restrictive and messed with my mind too much. 

I don’t have the guts to try full keto, but I will try lower carb. If you do well on it please let me know. The keto flu sounds a bit off putting. Lol definitely don’t want to add anymore symptoms to our list. 

And to report back on my Vape test. 

I vaped a few times all day, About half a cartridge. Used the Vuse Ciro Melon. 

FELT GREAT!!! Holy crap. Hit 119/80.

 

I have not seen this number is many months, if not a whole year.

i took my dogs for a walk on my own up hill and around my neighborhood today. Felt a touch tachy and woozy in the beginning (probably from the heat) but kept on going and eventually I worked through it. 

I was using a walker 3 days ago because I was so weak. I walked today completely on my own. No cane either! 

I squatted and stood up, I did not feel like I was going to pass out for once.

i am not lightheaded, weak, exhausted, short of breath, or in pain etc. I’m not nauseous, GI Tract is working well and no adrenaline surge (yet, although I get those at night and it’s just now 9pm)

I will try this for a week and report back. I’m scared today was too good to be true, but it was a great test because it was really hot today. I get really really sick in any type of heat and I even sweat a little! A touch but it’s better than not at all before 

 

It sounds like your experiment is working. It will be interesting to see if it keeps it up. I know nicotine ups HR and BP so be careful with the up of HR. 

[yogini]

Nicotine is a stimulant, so it might help your blood pressure.  But it's taxing on your heart and lungs. You might have to experiment but you could probably get the same effect from another stimulant or medication without the negative side effects.

[Pistol]

I agree with @yogini - smoking or vaping have many serious side effects, I would definitely look into meds with the same vasoconstrictive effects but without the unhealthy side effects. There are numerous meds out there that help POTS patients with similar POTS mechanism.

[Potsie1990]

6 hours ago, Pistol said:

I agree with @yogini - smoking or vaping have many serious side effects, I would definitely look into meds with the same vasoconstrictive effects but without the unhealthy side effects. There are numerous meds out there that help POTS patients with similar POTS mechanism.

What meds are you referring to? I’ve tried midodrine with horrific side effects. Florinef messes with my potassium levels. They really don’t have any other option for me. If there is something else I’d love to ask them. 

[yogini]

I think it would depend on your symptoms and form of POTS.  You may want to start keeping a log. When do you feel this?  Did you eat something before that is causing the nausea? What time of day, what is your BP and HR when it happens. Identifying your triggers can help you treat the symptoms and you can also avoid the triggers.

Your doctor can advise best, and you can also read up on the various treatments on the POTS main page and make suggestions to your doctor.  If you are looking to increase your BP, mestinon and SSRIs have been shown to be effective, for example.  If you're looking for a stimulant, some people take meds like ritalin  - I've never tried this and I don't know much about it.   People also drink coffee or tea, since caffeine is a stimulant.

 

[KiminOrlando]

My doctors put me on a prescription potassium to go with my florinef so I could stay on it. Seems to be working for me, but my potassium issues might not have been as bad as yours.

[bombsh3ll]

On 9/17/2018 at 5:11 AM, Potsie1990 said:

And to report back on my Vape test. 

I vaped a few times all day, About half a cartridge. Used the Vuse Ciro Melon. 

FELT GREAT!!! Holy crap. Hit 119/80.

Wow that is so great! It is a shame it came from something with potentially harmful effects, but equally people have had strokes on midodrine and life threatening arrhythmias from low potassium on florinef so even pharmaceutical drugs are not free of risks. 

I looked up Vuse and it doesn't seem to be sold in the UK, but there are similar products. Do you know what percent of nicotine it contains?

I am tempted to give one a try even if just to cross it off as an option as I would hate for there to be something out there that could have really helped me that I didn't try. Cherry flavour sounds particularly appealing and not at all stinky like cigarettes. I however do not have low BP and seem to be intensely vasoconstricted to begin with so nicotine doesn't sound as if it would be as great a fit for me, but what exactly about dysautonomia is logical or predictable??!

The only other thing that really helped me was licorice root, again not a prescription medicine but a herb. 

Have you used it again and found the positive effects consistent?

B x

 

[Potsie1990]

2 hours ago, bombsh3ll said:

Wow that is so great! It is a shame it came from something with potentially harmful effects, but equally people have had strokes on midodrine and life threatening arrhythmias from low potassium on florinef so even pharmaceutical drugs are not free of risks. 

I looked up Vuse and it doesn't seem to be sold in the UK, but there are similar products. Do you know what percent of nicotine it contains?

I am tempted to give one a try even if just to cross it off as an option as I would hate for there to be something out there that could have really helped me that I didn't try. Cherry flavour sounds particularly appealing and not at all stinky like cigarettes. I however do not have low BP and seem to be intensely vasoconstricted to begin with so nicotine doesn't sound as if it would be as great a fit for me, but what exactly about dysautonomia is logical or predictable??!

The only other thing that really helped me was licorice root, again not a prescription medicine but a herb. 

Have you used it again and found the positive effects consistent?

B x

 

One cartridge is about 15mg, and I do about a 1/2 a day. So roughly about 7mg-ish. 

 

And yes, you have to keep drinking water, sodium, and stay healthy but when I am feeling a drop or my symptoms, I just have a few puffs and within 25 min it subsides. I had a bad day yesterday as I added some caffeine in a different form which I did not tolerate but honestly, it’s not so bad. I used to smoke hookah  pretty often anyway and I suppose it’s definitely a healthier option. I missed it and it helps so, I will take the risk. I have come to conclusion that if I take 10-15 years off my life from this, then so be it. I don’t want to live til I’m 80 anyway if this is how it’s going to be. That’s way too much suffering.

 

on a side note, 

does anyone know how quickly does the sodium work? Like if I drank some broth equal to 2,220mg of sodium, when should I check my BP for the effects? Or when should I notice a difference? 

 

 

 

[StayAtHomeMom]

6 hours ago, bombsh3ll said:

Wow that is so great! It is a shame it came from something with potentially harmful effects, but equally people have had strokes on midodrine and life threatening arrhythmias from low potassium on florinef so even pharmaceutical drugs are not free of risks. 

I looked up Vuse and it doesn't seem to be sold in the UK, but there are similar products. Do you know what percent of nicotine it contains?

I am tempted to give one a try even if just to cross it off as an option as I would hate for there to be something out there that could have really helped me that I didn't try. Cherry flavour sounds particularly appealing and not at all stinky like cigarettes. I however do not have low BP and seem to be intensely vasoconstricted to begin with so nicotine doesn't sound as if it would be as great a fit for me, but what exactly about dysautonomia is logical or predictable??!

The only other thing that really helped me was licorice root, again not a prescription medicine but a herb. 

Have you used it again and found the positive effects consistent?

B x

 

If you have vasoconstrictor problems have you tried a dilator? The only one I can think of is alcohol. And I recall someone telling me a glass of red wine a day can help up your blood volume. I am sure there are others but that is the only thing I can think of. 

BTW if you have never smoked I would get the low nicotine doses. Smokers develop a tolerance and can handle a lot more nicotine than the average person. I think 0.6% is as low as it goes. 1.8% is roughly the strength of a regular cigarette. Just as an FYI. 

[StayAtHomeMom]

4 hours ago, Potsie1990 said:

One cartridge is about 15mg, and I do about a 1/2 a day. So roughly about 7mg-ish. 

 

And yes, you have to keep drinking water, sodium, and stay healthy but when I am feeling a drop or my symptoms, I just have a few puffs and within 25 min it subsides. I had a bad day yesterday as I added some caffeine in a different form which I did not tolerate but honestly, it’s not so bad. I used to smoke hookah  pretty often anyway and I suppose it’s definitely a healthier option. I missed it and it helps so, I will take the risk. I have come to conclusion that if I take 10-15 years off my life from this, then so be it. I don’t want to live til I’m 80 anyway if this is how it’s going to be. That’s way too much suffering.

 

on a side note, 

does anyone know how quickly does the sodium work? Like if I drank some broth equal to 2,220mg of sodium, when should I check my BP for the effects? Or when should I notice a difference? 

 

 

 

When I feel crappy and salt load it usually feels like 30 minutes or so and I feel a little better. I am not sure if that is accurate for everyone but that is how it is for me. Usually I just make sure I am eating enough salt and when I start craving salt I give in to it. 

[Pistol]

I am reading this post and all I can think is that-- now we are supposed to smoke and drink to treat POTS? I think not!!!!! ( Just my opinion ). 

[yogini]

19 minutes ago, Pistol said:

I am reading this post and all I can think is that-- now we are supposed to smoke and drink to treat POTS? I think not!!!!! ( Just my opinion ). 

 It's a free country so people can smoke and drink if they want to and they enjoy it.  But totally agree in my opinion these aren't treatments.

 

5 hours ago, Potsie1990 said:

One cartridge is about 15mg, and I do about a 1/2 a day. So roughly about 7mg-ish. 

 

And yes, you have to keep drinking water, sodium, and stay healthy but when I am feeling a drop or my symptoms, I just have a few puffs and within 25 min it subsides. I had a bad day yesterday as I added some caffeine in a different form which I did not tolerate but honestly, it’s not so bad. I used to smoke hookah  pretty often anyway and I suppose it’s definitely a healthier option. I missed it and it helps so, I will take the risk. I have come to conclusion that if I take 10-15 years off my life from this, then so be it. I don’t want to live til I’m 80 anyway if this is how it’s going to be. That’s way too much suffering.

 

on a side note, 

does anyone know how quickly does the sodium work? Like if I drank some broth equal to 2,220mg of sodium, when should I check my BP for the effects? Or when should I notice a difference? 

 

 

 

On the sodium when I was sick I drank one cup of broth about 750 mg sodium in the morning, then 750 mg at night every day along with lots of water.  this works well for me.  If you do it every day consistently, your blood volume will build up.

Remember that dysautonomia is something that gets better slowly over time.  Most of us actually focus on being healthier when we are at our worst, because that usually helps with recovery.

[StayAtHomeMom]

1 hour ago, Pistol said:

I am reading this post and all I can think is that-- now we are supposed to smoke and drink to treat POTS? I think not!!!!! ( Just my opinion ). 

I would never say that. But if you already smoking it doesn't hurt to change to vaping. And a glass of red wine has been one of those debated thing for decades. 

[Potsie1990]

5 hours ago, Pistol said:

I am reading this post and all I can think is that-- now we are supposed to smoke and drink to treat POTS? I think not!!!!! ( Just my opinion ). 

Absolutely not, but before I was diagnosed I did it occasionally, also drank wine occasionally. For me, nothing changes and if I feel better, so be it. I don’t tolerate midodrine and florinef and I choose not to suffer. It is what it is.

 

everyone has their own form of treatment that works. Until I find something else, for now, this is mine. 

 

Also so if you want to get technical, caffeine is highly addictive and users become very dependent on the substance. Also comes in many forms, some that are healthier than others. (Diet pills, diet drinks, energy drinks, etc). Caffeine is widely accepted and no one seems to talk about how terrible it is for you, and it can be just as “bad”. And there are studies done on neurological disorders and nicotine and caffeine usage. Obviously it’s not from vaping or smoking, and energy drinks but its getting into your body one way or another. 

Midodrine and Florinef all come with severe side effects. No pots treatment comes without side effects of some sort. It’s up the patient to decide what they can tolerate. 

If you dont want to smoke or vape or consume nicotine via patch or gum, then don’t.  

[Pistol]

I just find it strange that now we have to "self-medicate". But if it works - we all operate differently. I am just thinking - since nicotine is a vasoconstrictor: would a patch not work better, since it would put an even amount in the blood stream? Rather than vaping or smoking, which gives little bursts of nicotine? ( I am serious! )

[bombsh3ll]

12 hours ago, StayAtHomeMom said:

If you have vasoconstrictor problems have you tried a dilator?

Yes I have tried clonidine and doxazosin - both put me on the floor😖 I think in my case vasoconstriction is actually a physiological response to volume depletion rather than the primary pathology, as when I am feeling better I am less pale and cold, and my BP is lower. 

12 hours ago, StayAtHomeMom said:

The only one I can think of is alcohol. And I recall someone telling me a glass of red wine a day can help up your blood volume

I've not been able to tolerate alcohol at all since developing POTS. It is a diuretic as well as a vasodilator and often features in lists of what to avoid if you have POTS, but then I have read a few posts from people who have found alcohol helps them. I think it is an individual choice - if something helps you but is "unhealthy" I wouldn't judge anyone for taking what relief they can get. I too do not want to live decades like this and would choose quality of life over quantity.

I'm also not positive all the salt we hoover will prove to be harmless in the long term. There just aren't any scientific studies as yet relating to the cardiovascular effects in people with dysautonomia chronically consuming many times the usual daily recommended level of salt as a treatment.

12 hours ago, StayAtHomeMom said:

BTW if you have never smoked I would get the low nicotine doses. Smokers develop a tolerance and can handle a lot more nicotine than the average person. I think 0.6% is as low as it goes. 1.8% is roughly the strength of a regular cigarette. Just as an FYI. 

 That is a very useful point. If I did decide to try a nicotine product I would definitely choose the lowest strength. 

B x