Caffeine Tolerance / Intolerance

[ramakentesh]

Hey guys

just thought Id follow up on yet another theory.

Just hoping you can spare the time to answer a few quick questions:

1. Does caffeine decrease or increase your POTS symptoms?

2. Please explain how you believe it helps/worsens:

3. When symptomatic, are your hands and feet warm, red and bloated or cold, blueish or pale and clammy?

thanks!!!

[potsgirl]

Hi Ramakentesh,

This might make a good survey...Answers to:

1. It decreases my morning symptoms. I have one cup of coffee first thing when I get up every day.

2. I can't tolerate much Midodrine, so I think it helps lift me out of my fog and give me just a little more energy. Not a big difference, but enough that I keep drinking it.

3. My feet and hands tend to always be cold and bluish/purple.

Jana

[valliali]

This is really interesting...

1. Caffeine will probably kill me at this point.

2. It makes my heart rate and blood pressure skyrocket, and I feel like I am having a six hour long (or however long it is in my system) panic attack. I am so sensitive to caffeine, or anything else that raises or mimics norepinephrine. Yet, I have normal NE levels. I believe my underlying issues is due to a sensitivity to norepinephrine, or a problem with norepinephrine metabolism.

2. Neither.

[ramakentesh]

Interesting post. It is possible some hyperadrenergic patients (although this is still a debated causal mechanism) have alpha1 or beta supersensitivities which would explain your normal NE levels and potent reaction to stimulants.

More interestingly however is this study:

http://circep.ahajournals.org/cgi/content/abstract/1/2/103

Here patients with POTS were found in 5 of 6 cases to have reduced or nearly absent peripheral norepinephrine transporter protein expression. This in theory would lead to excessive norepinephrine levels and POTS through excessive stimulation, increased peripheral resistance and vasoconstriction. However in these patients, norepinephrine levels were not significantly higher than normal controls AND their MSNA (muscle sympathetic nerve activity) was found to be considerably elevated despite these normal NE levels - as if the nerve activity and norepinephrine levels were mismatched.

It could be that rather than decreased NET levels causing a hyperadrenergic state, decreased or abnormal norepinephrine release or receptor activation is resulting in reduced NET but that it is creating a supersensitive state. THis is where clonidine, methyldopa or phenobarbitol might come in to play.

next time your symptomatic, please have a look at your hands - feel them to see if their is any change in their appearance, temperature.

[valliali]

Hi, thanks for sending the paper and sharing your thoughts. That's really interesting.

However, my NE levels weren't just normal, they were on the lower end of the normal scale. I have had my NE levels tested many times, and all of them were very very normal. But I am really interested in learning more about the NET and several of its issues that are/may be linked to autonomic dysfunction.

I don't actually have POTS. I don't have a diagnosis. I was diagnosed with POTS from a cardiologist who didn't know anything about autonomic dysfunctions, after I had a normal TTT, but at the end of it, after the isuprel infusion when I was lowered on the table, my heart rate jumped from 100 to 170 with severe symptoms. He indicated that my heart rate was still sinus rhythm, but some of my other doctors suspect this was a PSVT. I do not know to this day, and because beta blockers control my heart rate SO well, I am really not ready to find out what was going on. However, I had this reaction to the isuprel infusion, not to the tilting. My heart rate and blood pressure did not change much on the TTT, though they do sometimes, but a rapid heart rate/dizziness upon standing are not amongst my hallmark symptoms.

If I do anything that raises "adrenaline" - consume caffeine (I can't even touch chocolate), exercise, etc etc - my heart rate is out of control. Without beta blockers, it will quickly jump from 100 to over 200 from minor stimulation.

One test I have had come back abnormal was for normetanephrines, the metabolite of norepinephrine. I contacted a researcher at NIH who specializes in catecholamines and he suggested I could not be metabolizing the NE, which means more is going into the neurons than should be. I have not found a single doctor who understands what low normetanephrines mean, and I am seeing some of the best at a very well regarded institution that even has POTS doctors. So I've put this abnormal test on the back burner, but now I am interested in pursuing this avenue of problems with NET and/or norepinephrine metabolism.

Thanks so much for your suggestions!!!

Interesting post. It is possible some hyperadrenergic patients (although this is still a debated causal mechanism) have alpha1 or beta supersensitivities which would explain your normal NE levels and potent reaction to stimulants.

More interestingly however is this study:

http://circep.ahajournals.org/cgi/content/abstract/1/2/103

Here patients with POTS were found in 5 of 6 cases to have reduced or nearly absent peripheral norepinephrine transporter protein expression. This in theory would lead to excessive norepinephrine levels and POTS through excessive stimulation, increased peripheral resistance and vasoconstriction. However in these patients, norepinephrine levels were not significantly higher than normal controls AND their MSNA (muscle sympathetic nerve activity) was found to be considerably elevated despite these normal NE levels - as if the nerve activity and norepinephrine levels were mismatched.

It could be that rather than decreased NET levels causing a hyperadrenergic state, decreased or abnormal norepinephrine release or receptor activation is resulting in reduced NET but that it is creating a supersensitive state. THis is where clonidine, methyldopa or phenobarbitol might come in to play.

next time your symptomatic, please have a look at your hands - feel them to see if their is any change in their appearance, temperature.

[valliali]

One other thing: I reacted very very poorly to Clonidine. It completely knocked me out. Not just tired knocked out, but like I couldn't even motivate myself to move, at all. That was on a very very small dose too. I don't think my NE levels need to be lowered at all. I respond very well to beta blockers. Especially non-selective ones. I am on a low dose of propanolol, and would not be able to function without it.

Also, regarding the hands, sometimes I notice the veins seriously bulging but not necessarily when I am symptomatic. They don't really change temperature, other than being sensitive to the cold. My face is much more greatly affected when I am symptomatic. When my body temperature is low, like 96.5, but then I go into an environment that is warm, my temperature will shoot up to around 100 degrees, and stay that way for upwards of 10 hours. I will also experience a horrible facial flush with lots of burning. The propranolol has helped this a huge amount as well.

[bjt22]

Caffeine is my friend. When I first became extremely symptomatic, years and years ago, and was passing out several times a day as well as having constant episodes of extreme tachycardia, I decided, before I even went to the doctor, that I was going to try to live in a more "healthy" fashion...so, I cut out caffeine. Looking back, at that point, I went from very bad to the absolute worst. Very quickly.

I don't use huge quantities of caffeine, but I do keep a glass of diet coke with me all the time...I sip throughout the day. I can see that some uses of caffeine could be problematic. For example, if one were to have two or more very strong cups of coffee in the morning and then no more...when the caffeine left the system there would be a huge crash.

[bjt22]

oh, and my hands and feet? I tend to have the warm, dry hands and feet of a patient with autonomic failure. I pool constantly, so if they are hanging down to the least degree, they are purple and blotchy and will swell. My veins always bulge if I'm not laying completely flat. For me, this is very easy to observe as I have very fair skin that barely covers my vasculature. It's just right out there.

I have features of a "hyperadrenergic" state...however, that has never fit me as overall, my symptoms are much more in line with a true dysautonomic state. I do think that I have part of my vascular system that does over-react to certain stimulation. I can't use some stimulants, and never have been able to. Maybe more information than anyone wanted to know, but back in my wild and mis-spent youth, "speed" was a very common recreational drug. Many people loved using amphetimines. I tried them once, maybe twice. Could not tolerate them at all. Made me sick all over feeling. Likewise, I could never use many cold medicines that contained ephedrine. To be honest, though, I'm not sure if I was bothered by these drugs in my system, or if I was reacting to their leaving my system. It's been a very, very long time....

Clonidine in the form of Catapres does work for me...but this is thought to do so because it does not "crash" the blood pressure in people with autonomic dysfunction. In fact, when I first started using it, my baseline blood pressure actually increased somewhat. I needed a beta blocker as well in order to keep my blood pressure down and to even begin to lower my heart rate.

[Steph06]

Hey guys

just thought Id follow up on yet another theory.

Just hoping you can spare the time to answer a few quick questions:

1. Does caffeine decrease or increase your POTS symptoms?

2. Please explain how you believe it helps/worsens:

3. When symptomatic, are your hands and feet warm, red and bloated or cold, blueish or pale and clammy?

thanks!!!

I have to have a cup of coffee in the morning to help get me going and to prevent a caffeine headache. I always drank a lot of coffee and I found that it did make my symptoms worse. I think everyone one is different when it comes to how much caffeine they can handle. (I could be wrong) As for my hands, sometimes they are really cold, bloated and blueish. What's weird is that its normally in my left hand only. When I am having a really bad POTS moments my hands are really clammy. I hope this help!

Stephanie

[summer]

#1. Caffeine helps with my morning symptoms, and occassionally to improve brain fog, but I can't take too much of it.

#2. I think in the am it increases my bp which can be pretty low when I first get out of bed. I think the stimulant effect helps with my brain fog occassionally, but I can't over do it or I will become tachycardic and jittery.

#3. Cold and bluish, mottled to above my knees definitely.

[janiedelite]

1./2. It depends. When my pooling is worse (hands and feet are red and warm, BP lowish, super tired) it relieves those symptoms pretty well. However, caffeine creates more problems as it takes very little caffeine to produce way too much adrenaline in me (hands and feet and cold and pale, palpitations, high BP, chest pain, burning skin) and it seems to take days to come down from the excess adrenaline.

3. Again it depends. Baseline, I always have pooling, fatigue, narrow pulse pressure, reddish purple hands and legs. If I do too much, talk much, stress, etc. then I get the problems from too much adrenaline that I described above. Alcohol sometimes helps a bit during the worst of these times, but I avoid it because my body overreacts to any stimulant or depressant that I put in it. There's never a happy medium. I usually have some degree of both scenarios going on.

[fire_lupine06]

1. Some helps too much puts me on edge and makes me snappy

2. Not really sure how to reply

3. my hands and feet are alil red and splotchy normally...but if i stand alot they go clamy and blue ><

[firewatcher]

When I am symptomatic, my hands are white and the nailbeds are purple or blue and they are cold and sweaty. My feet do the same.

Before I was on meds, even the slightest caffeine after noon would keep me awake for HOURS! I could feel it rev me up, but I was so physically tired I drank it anyway. One soda was my limit for the day, or no sleep that night. Real coffee was a big no-no. Now that i am on BB's and melatonin, I sleep very well...I just have a problem waking up in time for anything and am extremely symptomatic if I have to get up before 9 AM.

[toddm1960]

1) Need to have one. maybe two cups tops. Gets me moving in the morning, breaks the foggy head. Also I'm a stomach pooler and if I have more than two I become pregnant man.

2) Helps me first of because of my delta / alpha sleep problems and I need a kick start. Second it clears my head to start thinking for work.

3) My hands and feet are cold but never turn color.

[yogini]

Sometimes it makes me feel more alert and gives me more energt. Other times it gives me tachycarda and insomnia. I haven't noticed any effect on hands, feet, etc.

[ramakentesh]

Thanks for the replies guys. Keep them coming.

'I haven't noticed any effect on hands, feet, etc. '

Sorry I didnt mean from the caffiene or a reaction to it. I mean generally when you are symptomatic.

I am attempting to differentiate patients based on periperhal resistance and pooling in terms of symptomatic profile.

Valliali - I believe there is thought that some patients with POTS-like states can be suffering beta-receptor hypersensitivity. A good way of determining this would be your MSNA (nerve activity firing rate) in relation to the levels of norepinephrine in your system. If it appears uncoupled or inappropriate for the levels (as found in the patients in the study above of which I was one of them), it could suggest NET deficiency or beta hypersensitivity. Alpha hypersensitivity on the other hand would be more likely lead to excessive vasoconstriction. beta hypersensitivity would be more likely to just result in anxiety/jittery type scenarios.

[ramakentesh]

Oops I also forgot to mention the possibility of parasympathetic withdrawal in these disorders. Could explain a lot of the features of POTS in some patients.

[Rachel]

1. Decreases my POTS symptoms

2. It raises my bp, and it helps me to wake up in the morning.

3. Either. Sometimes they are red and burning. Other times they are cold. They are only blueish if I stand up, and thus have blood pooling. They are never blue from being cold. Never clammy either.

[valliali]

Thanks! I will have to look more into the MSNA and talk to my doc about this. I do believe I have a beta receptor sensitivity, I just don't know why or how. I have had other symptoms that are not related to adrenaline sensitivities (like arthritis), though most of mine do seem to be.

Also, what is parasympathetic withdrawal?

[ramakentesh]

yeah i remember that arthritis connection. Interested me because I came down with Ank Spon out of the blue when I got POTs out of the blue. Weird.

I believe the parasympathetic concept is that it is faulty in some patients meaning that their sympathetic system is acting unapposed to some degree and their vagal nerve is way too touchy.

My belief is that this could be a similar mechanism to other forms of peripheral dysautonomia forms of POTS, only the anti bodies are having more of an impact on the parasympathetic system because it functions almost purely on acetylaclohine (sp?) (the antibodies found in 13% of POTs patients attach these receptors).

So rather than causing peripheral pooling when they attack the receptors that vasoconstrict the legs, they cause parasympathetic failure, creating a postural hyperadrenergic state but where actual NE and E are low normal and not elevated.

In a patient with postural hypertension and thus by implication 'hyperadrenergic POTS' mestinon improved his symptoms - this seems strange given the current understanding.

Your symptoms are fairly similar to mine, although my NE was slightly elevated 480 nmol or there abouts, but my MSNA was SUPER high during tilt.

It could also just be that there is some sort of epigenetic mechanism going on with your beta receptors similar to that suspected in POTS peopel with low or no NET expression. That is that the promoter region of the gene for this protein becomes hypermethylated and switched off.

OR it could be a different type of autoimmune attack on these betareceptors or on alpha receptors, causing the remaining ones to become hyperactive (distal denervation seems to occur in some POTs patients at least).

Got all the theories and all the right questions, but not many firm answers yet...

Edited July 7, 2009 by flop

[jump]

Before I had any kind of treatment for POTS, I relied on coffee to relieve some of my symptoms. I can't tolerate it at all in the morning, when my tachycardia is at its worst. But before any kind of treatment, I would often have very difficult spells of bradycardia in the afternoons or evenings - my hr would drop to 45 or 50, and I would get very, very cold. My hands and feet would turn purple and get so cold that I couldn't write or use my hands very much at all. My lips would turn purple. When this happened, caffeine in the form of a hot beverage helped a LOT.

Now that my tachycardias aren't as severe, I find my bradycardias aren't as severe, either. I still can't drink coffee in the morning (gives me a stomach ache and makes my heart race too much), but I occasionally drink it in the afternoon with no ill effects. In the winter I often have freezing cold hands/feet/extremities, and then I do use caffeine to warm me up again.

Caffeine has never helped me stay awake or helped me be more alert. I use it solely to get my circulatory system going again.

[jayje]

sadly caffeine and i no longer agree.

less than 2 years ago, when i was still a rower, i needed my v energy drinks to make it to the 5am training sessions and we could all put away 2 or 3 before heading off to school with absolutely no side affects. In comparison last week i had one mouthful of a friend's drink and found myself still trembling/tremor-ing *brain fog* three hours later.

needless to say i won't be trying that again for a while

jayje x

[valliali]

thanks rama -

i will have to read your post a bit more thoroughly when i have time and try to understand everything you said. i need to look more into the msra. the only issue i have is that some of my symptoms don't seem NE related. it is strange that you had ank spond suddenly too.

jayje - i was a rower too!!!!

[iheartcats]

1. If I have to be out and about, I always grab a Latte in the AM. It helps. I also find an iced tea or something similar to help in the afternoon if I am out walking around. But a latte in the AM is really needed to kick start my day when I'm working!

2. I think it increases my BP along with my Midodrine in the AM and get me more functional. Not sure...but a combination of the milk (protein + hydration) plus caffeine from espresso works. It's better than normal coffee for me, even. Since I'm on a BB, I don't think it does much to my HR.

3. My hands tend to feel colder. And feet, on touch.

[cordila]

I have to stay yards away from any type of caffeine, esp coffee. Very tragic. I will say that (icky topic coming up...) if I am backed up in excess of a week or more I will resort to coffee as a rescue remedy. After 3 sips I'm usually able to go. The trouble is, I am then so wired for sound I can barely stand it. I am then irritable and panic attacky for the rest of the day.

When symptomatic I notice my feet tend to be blue/cold and my hands cold/clammy.