Smoking helps pots?

[dancer65]

I hate to admit I am a smoker, triumphed a few times in giving up only to start again ,I hate the smell I don't smoke indoors I am now a light smoker since my last attempt to give up  lasted 18 months using an e cigarette. I will admit I really am addicted and if you decide to start using nicotine products I would seriously think about the fact only a very small percentage of people give up forever it is highly addictive 

I found both gum and e cigarettes exasperated gum issues more than smoking itself and some of the vapour really gave me bad breath (sorry if tmi!) Some of the vapours smell really strong too. Be careful too which liquids you buy many of them have terrible chemicals in them,I read somewhere some of these chemicals are used in antifreeze.

Whilst nicotine does raise BP it also can raise HR something to consider if you have tachycardia . Also proven nicotine exasperates anxiety, so smokers like myself who say I need a cig I'm stressed actually are making it worse ! 

I couldn't use patches they gave me really bad rashes which took a week to go down and drove me mad itching 

Lastly consider if you use any  nicotine products you have to declare it to your life insurance company well you  do here in uk , that's adds what they call loading to your policy by 50 percent !

I am not judging anyone for what they choose to  do ,I just wanted to share my experiences , bottom line for me is I wish I had never lit my first cigarette and I will be attempting yet again to give up 

[StayAtHomeMom]

7 minutes ago, dancer65 said:

I hate to admit I am a smoker, triumphed a few times in giving up only to start again ,I hate the smell I don't smoke indoors I am now a light smoker since my last attempt to give up  lasted 18 months using an e cigarette. I will admit I really am addicted and if you decide to start using nicotine products I would seriously think about the fact only a very small percentage of people give up forever it is highly addictive 

I found both gum and e cigarettes exasperated gum issues more than smoking itself and some of the vapour really gave me bad breath (sorry if tmi!) Some of the vapours smell really strong too. Be careful too which liquids you buy many of them have terrible chemicals in them,I read somewhere some of these chemicals are used in antifreeze.

Whilst nicotine does raise BP it also can raise HR something to consider if you have tachycardia . Also proven nicotine exasperates anxiety, so smokers like myself who say I need a cig I'm stressed actually are making it worse ! 

I couldn't use patches they gave me really bad rashes which took a week to go down and drove me mad itching 

Lastly consider if you use any  nicotine products you have to declare it to your life insurance company well you  do here in uk , that's adds what they call loading to your policy by 50 percent !

I am not judging anyone for what they choose to  do ,I just wanted to share my experiences , bottom line for me is I wish I had never lit my first cigarette and I will be attempting yet again to give up 

Have you tried the medication Chantix to help you quit? It has helped a few people I know. Personally I don't have the will to quit. So I don't try. I applaud you though. I know it can be hard but I am sure you can do it

[dancer65]

No I haven't tried it . I am hoping I will do better this time mentally and physically I am in a better place and we had a awful lot of stress and upset at the time I gave up, I am telling myself if I could stop for  18 months when all that was going on I can do it now things are better ! I have cut down even more this last few weeks ant psyching myself up for the first day ! Thanks foe encouragement , now if it was food or alcohol I had to give up it would be no problem 😁

[StayAtHomeMom]

2 hours ago, dancer65 said:

No I haven't tried it . I am hoping I will do better this time mentally and physically I am in a better place and we had a awful lot of stress and upset at the time I gave up, I am telling myself if I could stop for  18 months when all that was going on I can do it now things are better ! I have cut down even more this last few weeks ant psyching myself up for the first day ! Thanks foe encouragement , now if it was food or alcohol I had to give up it would be no problem 😁

I know that feeling, I don't drink much (maybe once a year) and food makes me sick sometimes so I wish I could just quit. 

I realized I was addicted when I was 16 (was pregnant and tried to quit) I realized I didn't want to quit a few years later so I don't try. My mom finally quit 12 years ago when my youngest was born. She has quit a few times in her life but finally managed it. I know it can be very hard. My aunt and sister in law both tried Chantix and it helped them tremendously to quit. Might be worth checking out if you really want to quit. Good luck. 

[dancer65]

I will look into it thanks so much for the information x

[Pistol]

@dancer65, @StayAtHomeMom - I smoked for many years and tried to quit several times. When I had my daughter (13 years ago) I just ended up quitting cold turkey, although my husband continued to smoke. It was simply that she gave me a reason NOT TO WANT to smoke anymore. The need to quit was stronger than the need to smoke. And I never looked back - once the habit is broken it is done-and-over with. And I feel so much better since! 

[yogini]

On 9/20/2018 at 7:56 PM, StayAtHomeMom said:

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. 

 

11 hours ago, bombsh3ll said:

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. 

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.

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

B x

If you have low blood volume alcohol as a diuretic would make you worse.  I have also read that alcohol helps some, but I am not sure many of us use it as a regular treatment.

[StayAtHomeMom]

2 hours ago, yogini said:

 

If you have low blood volume alcohol as a diuretic would make you worse.  I have also read that alcohol helps some, but I am not sure many of us use it as a regular treatment.

The red wine was what I was told is specific to helping blood volume. Not sure on the other alcohols. 

[StayAtHomeMom]

3 hours ago, Pistol said:

@dancer65, @StayAtHomeMom - I smoked for many years and tried to quit several times. When I had my daughter (13 years ago) I just ended up quitting cold turkey, although my husband continued to smoke. It was simply that she gave me a reason NOT TO WANT to smoke anymore. The need to quit was stronger than the need to smoke. And I never looked back - once the habit is broken it is done-and-over with. And I feel so much better since! 

I can imagine how much better you feel. A few years ago I went straight e-cigarette and I could feel the difference just from that. Congratulations on quitting. 

[dancer65]

Well done for giving up pistol! Your absoultly right you have to want it to succeed . I know there is part of me that really enjoys smoking and that's what I need to get over in order to give up . My husband gave uo cold turkey but says he still craves one every now and then.

[Potsie1990]

Ok guys, so here’s an update.

 

its been a month or so since I started vaping.

i moved up the juul with 5% nicotine, still doing 1/2 a day.

i am completely without my walker and cane. Still fatigued at the end of the day if I over do it but overall a million times better. I feel like I’m in remission!!!!

last Sunday I stopped smoking 5 days before my scheduled autonomic testing, to make sure it was completely out of my system. Sunday itself was not so bad, every day after it was a slow trickle down to where I started. By Wednesday, I was back on my walker and cane. 

I went to an autonomic testing center at UCLA and did the whole thing, Valsalva, deep breathing, QSART,  two different TTT’s, the whole shabang, in one day. F’ing exhausting and felt like I was going to die after. 

I told my doctors what I was doing and they were amazed, although they could not endorse it obviously. My digestion is better and my symptoms of gastroparesis are alleviated.

i can now sleep at night without all the strange terrible things that used to happen to me. My body no longer forgets to breathe.

its also been a month without the mysterious traveling nerve pain and joint pain. 

Turns out, my BP actually doesn’t drop the way that thought it did. It’s on the lower end and I feel better when it rises but it actually goes up when I stand. The electrophysiologist also confirmed it was POTS. 

 

So, take it with what you will. But I have been able to drive again normally, breathe, walk, jog if I have to. I feel like a whole new person and I’m forever grateful to finally experience this after a long, gruesome year of failing health. I still have chronic fatigue but I will take what I can get.

 

i ended up stopping the caffeine experiment. Caffeine doesn’t process in my body at all (although for me synsthetic is better an natural) but it makes me so tired. 

[StayAtHomeMom]

If you want to quit smoking it sounds like midodrine may help you. It is a vasoconstrictor. The side effects can be disconcerting but it may allow you to quit. Talk to your doctor about it. 

And I am happy that you found something that helps you. I know what relief it is to feel "normal" , even if it is only temporary. 

[Potsie1990]

Hey everyone,

thought I’d give another progress update :

i consulted a new POTS Cardiologist here in LA and we decided to get myself back on Birth Control as my POTS is worse with my naturally fluctuating hormones. 

 

Ive been on generic YAZ for about 10 years and I can’t live without it. Every other birth control makes me severely ill and aggravates my POTS. I also have severe orthostatic hypotension which this helps also.

so I don’t smoke, but I am still vaping. My cardiologist, who is Harvard educated and is with UCLA has given me the permanent green light to continue with nicotine. I have all 4 of my doctors on my team giving me a full yes to continue. That being said, I am not addicted to nicotine and I likely will never be according to them. I have no cravings for nicotine whatsoever and actually have to remind myself to do it. That being said, if you suffer from addiction issues I would be cautious. I guess I’m one of those people for who nicotine addiction just isn’t a thing. I’m not the only one, several people online I have found are the same. 

 

That being said, adding salt into my diet, resting and adding back the Birth control and vaping has been a miracle for me. Just 2 months ago (during my testing phase which I was off everything) I was on a walker, and had muscle weakness so bad I could barely breathe or move my arm without nearly passing out. 

 

Now, I am almost in remission. I have resumed normal activities. I still need rest days and an IV treatment here and there but I am feeling great! I can run! And I’m actually starting ice skating lessons as my choice of physical activity for POTS. 

 

And as a reminder, I have tried 4 of the Meds typically given for POTS and OH and AI and all 4 have failed and one left me in the hospital with severe bradycardia and almost temporary paralyzed for an hour. So, for myself I can say that I’ve tried a few things already and they are just not working as I have a severe sensitivity to meds

 

Just thought id share. I know it’s not conventional but at the end of the day it’s about quality of life. If anyone needs advice on finding doctors or getting treatment I will be more than happy to share my doctors info with anyone. 

 

This combo worked for me, and hopefully it can help someone else too. 

[StayAtHomeMom]

3 hours ago, Potsie1990 said:

Hey everyone,

thought I’d give another progress update :

i consulted a new POTS Cardiologist here in LA and we decided to get myself back on Birth Control as my POTS is worse with my naturally fluctuating hormones. 

 

Ive been on generic YAZ for about 10 years and I can’t live without it. Every other birth control makes me severely ill and aggravates my POTS. I also have severe orthostatic hypotension which this helps also.

so I don’t smoke, but I am still vaping. My cardiologist, who is Harvard educated and is with UCLA has given me the permanent green light to continue with nicotine. I have all 4 of my doctors on my team giving me a full yes to continue. That being said, I am not addicted to nicotine and I likely will never be according to them. I have no cravings for nicotine whatsoever and actually have to remind myself to do it. That being said, if you suffer from addiction issues I would be cautious. I guess I’m one of those people for who nicotine addiction just isn’t a thing. I’m not the only one, several people online I have found are the same. 

 

That being said, adding salt into my diet, resting and adding back the Birth control and vaping has been a miracle for me. Just 2 months ago (during my testing phase which I was off everything) I was on a walker, and had muscle weakness so bad I could barely breathe or move my arm without nearly passing out. 

 

Now, I am almost in remission. I have resumed normal activities. I still need rest days and an IV treatment here and there but I am feeling great! I can run! And I’m actually starting ice skating lessons as my choice of physical activity for POTS. 

 

And as a reminder, I have tried 4 of the Meds typically given for POTS and OH and AI and all 4 have failed and one left me in the hospital with severe bradycardia and almost temporary paralyzed for an hour. So, for myself I can say that I’ve tried a few things already and they are just not working as I have a severe sensitivity to meds

 

Just thought id share. I know it’s not conventional but at the end of the day it’s about quality of life. If anyone needs advice on finding doctors or getting treatment I will be more than happy to share my doctors info with anyone. 

 

This combo worked for me, and hopefully it can help someone else too. 

That sounds amazing. I am glad you found a combination of things that work for you. 

[Potsie1990]

1 hour ago, StayAtHomeMom said:

That sounds amazing. I am glad you found a combination of things that work for you. 

Thanks so much. It’s been a year since I came down randomly with severe POTS (although I’ve had it my whole life undiagnosed) and it’s been a wild year of ups and downs, with more downs then ups. And I was only diagnosed officially in October, so it took 11 months and a stroke of luck to get a diagnosis. I am grateful for this time of health and will treasure it until my next flare. 

[Potsie1990]

Hi everyone, sending an update. 

 

Still doing the nicotine. I get a flare every 2.5 weeks, and still needs rest days after extremely active days. My cardiologist, neurologist and electrophysiologist all gave me the green light to continue the nicotine because they say that quality of life is more important than me suffering. 

I started figure skating!!!!!!!!!!!! I skate for a full 1.5 hours now and starting working with a private coach! And I mean REAL skating, nothing slow! I chose this as my physical activity because I have to be ina  temperature controlled environment because of my heat intolerance and sweating issues but it works! I can actually breathe and it’s so awesome! 

 

Again, I know this is a controversial form of therapy but I just want everyone to know strange things help certain people. My life and symptoms  100% more manageable now and I can now enjoy my life! I still need to salt load and do my pots things but I am d*** near normal now! (Well, as normal as one can be with this. Lol) 

 

there is hope, and don’t worry about being judged by other people for doing what works for you. This is not a one size fits all disorder, and if there’s anything we have all learned, the treatments are the same way. I’m actually going to be cleared to fly soon  

[Pistol]

I am happy to hear that you are doing better!!! I was a trained figure skater in my youth and certainly understand how much joy it brings - good for you to have an activity that is good for you, gets you exercising and brings you pleasure!!! 

[Potsie1990]

6 hours ago, Pistol said:

I am happy to hear that you are doing better!!! I was a trained figure skater in my youth and certainly understand how much joy it brings - good for you to have an activity that is good for you, gets you exercising and brings you pleasure!!! 

Thank you so much! It’s truly is my new found passion. Nothing makes me happier than being on the ice. To think a few months ago I was crying and depressed with life and couldn’t move, and to now be able to experience so much joy.... it’s the greatest gift. I don’t know how long this will last, but for now I am enjoying my life and I’m trying to make up for the year I lost. 

[dancer65]

That's wonderful news! 

[doppelgaenger]

I used to smoke and switched to nicotine pouches to still get the nicotine fix while avoiding the harmful effects of smoking.  I think there may be something to this but I'm not sure I even have POTS.  In the morning, if I stand after sitting for a bit, my pulse can easily jump from 75  to around 125.  It usually takes 5 minutes or more for it to drop back below 100.  But, then if I sit back down it seems to rapidly go the other way into the mid 60s in less than 2 minutes.  Nicotine does seem to increase my resting pulse some and reduce the big up and down fluctuations when I stand or move.   And, it normalizes my BP, from my usual 95/60 range to around 110/70.  Any thoughts?