Broke The Golden Rule This Morning

[Guest tearose]

For me and I think anyone with POTS and who takes a smidge of medicinal coffee...we know to use good judgment and moderation.

The golden rule to me is more "let not the body get dehydrated"

[yogini]

I can tolerate caffeine most of the time, but I noticed some things on some days - difficulty exercising, bad tachy episodes and esp trouble sleeping. I tried cutting it out and definitely feel much better without it. But I think some dysautonomia patients benefit from it, especially those both low HR and low BP. One of the things you have to play around with to see what works for you.

[India]

Like Tammy and Dawn, I can't do caffeine at all because of hypoadrenergic excess and tachy probs. I eat chocolate on occasion because it makes me feel good but too much is very bad. I have to balance short term happiness with longer term yuckiness! The tachy can get very bad and outweigh any benefits it has on my POTS symptoms. I haven't had caffeine for over 15 years (people are always shocked when I say this!) and I don't even have decaf anymore either given that studies of decaf coffees suggest that some of them still have a high amount of caffeine. (Folgers decaf crystals are apparently the lowest in caffeine-but always check the label). I occasionally drink Sanka for the "illusion" of coffee!

As others have said, it's a very individual thing.

India

[Sushi]

From what I've read, "to coffee or not to coffee" depends on they type of dys you have, and how you individually react. I am a total slug in the morning and without some caffeine and a bit of adderall, I'd probably just stare at the wall trying to figure out what day it was, for hours. Usaually I drink tea, mainly cause I have to watch my bones, and I put an electic kettle and tea pot next to the bed--almost like a butler!

One think I've read about provigil, though I know it is miracle for some, is that it increases nitric acid and there is a school of researchers who feel that this addes to our overall problems. But it is by no means proven. I spose that Adderall has been said by others to have bad side effects long term, but for now it is a good friend and doesn't raise my BP too much at the low dose I take.

But now and then I know I won't even get out the door without a cup of coffee.

[ode_to_fantasy]

I can only drink coffee when I don't have to do anything that requires functionality that day, as I'll be passing out almost constantly after it, even on the Mestinon! :-p

I miss it soooo much....but I'll drink it on a Saturday afternoon if I'm feeling particularly indulgent. :-D

[Megan]

I'm so glad to hear I'm not the only one who MUST have coffee!! I stick to decaf when I just want the flavor, but sometimes I definitely need the caffiene or I am basically worthless and too out of it to accomplish anything. I will have to remember the tip about drinking Gatorade first, though. I have an awful time fighting dehydration.

Meg

[ramakentesh]

A little coffee is fine, as needed. All the DRUG STIMULANTS are similar or much stronger. I use coffee.

Really, how do you figure? Not all stimulants are diuretics for a start. Infact I remember some people expressing concern with butchers broom being a diuretic when caffeine is a far more potent one. That being said i was on a diuretic for a while for an unrelated illness and it didnt effect my pots overly so I might an exception to the rule here.

Caffeine intolerance occurs in POTS patients with excessive sympoexcitation. Coffee for me when im very POTSie is an ABSOLUTE no no - it worsens all my symptoms. When im really bad even a can of coke will set me off into total dizziness, jitteriness and tachy. I once drank a coffee and my heart rate went to 200 for about 4 minutes, very scary.

When i start to feel better I can tolerate caffeine more - and gradly i can return to my beloved caffeine although at the end of the day I always feel more potsie from it than without it. It helps me in the shortterm for an energy/BP boost but it doesnt help two hours later when i feel evern more jittery and dizzy than when i started it.

infact caffeine intolerance was my first symptom of POTS - i got it about six months before POTS came on.

The title of this thread was slightly misleading - most POTS patients can indeed tolerate caffeine and some it even helps considerably, but for the more hyperadrenergic types this isnt the case. If your a blood pooler in the legs it would be a god send - if your a vasoconstrictor then it will make that worse...

Doctors say to avoid caffeine more because of their guess that it wont help - its guesswork more than science.

[MelissaCrystal]

I envy all of you who can do coffee. It's like poison for me---all my POTS symptoms get bad enough to worry about having a heart attack or super BP crash when it wears off. I crash so bad from it, and during it, my body goes haywire. So weird how POTS varies from person to person.

[ramakentesh]

Yeah i am really the same. It can help when im really dizzy and trembley but i feel worse and more trembley afterwards maybe one or two hours. I get the feeling that if I use it a lot it tends to make me worse afterwards for a while - just seems to be a pattern. If I drink coffee during the day afterwards im like a zombie.

Different types of POTS are affected differently i guess.

[Guest brianala]

I miss coffee sooooo bad! My cardio told me no mas, nada. That was about 8 months ago and I still have my days where I desperately need a cup.

Thing is, if I even have so much as a chocolate candy bar, my tachycardia starts acting up like crazy for the rest of the day.

Is anyone else this super-sensitive to even chocolate?

[carinara]

Hi ramakentesh, you wrote:

The title of this thread was slightly misleading - most POTS patients can indeed tolerate caffeine and some it even helps considerably, but for the more hyperadrenergic types this isnt the case. If your a blood pooler in the legs it would be a god send - if your a vasoconstrictor then it will make that worse...

I have never been able to tolerate caffeine and i suffer from the more hyperadrenergic type of POTS. When i had an appointment with a POTS specialist in November, he pointed out to me, how my legs

turn a little blue whilest standing, so i assumed that i have blood pooling in the legs. Ramakentesh, you wrote that caffeine might be a god send for blood poolers. Well with me this is not the case. But now i wonder if i might have got the vascoinstrictor type. How do i know and find out if i am a vascoinstrictor??

Thanks a lot

carinara

[ramakentesh]

Blood pooling looks like this:

http://www.nymc.edu/fhp/centers/syncope/pots.htm

Blood Pooling in the legs would indicate that you dont actually have the truly hyperadrenergic form of POTS. You might however have a hyperadrenergic response to your form of POTS and a got an email reply from one researcher who told me that the highest norepinephrine levels he encountered were in a patient who definately had blood pooling in the legs.

This kind of makes it confusing. On the one hand the traditional concept of POTS is that is it either - partial dysautonomia where there is failure of the lower vasculature to constrict on standing. Its important to note that this can present with a hyperadrenergic response (tremors, anxiety, sympo-excitation) and blood pooling.

The truly hyperadrenergic variety of POTS is still conjectural and hasnt been proven yet. The concept is that these patients problem is that their bodies do not take up norepinephrine from their systems. So they stand and the norepinephrine slowly builds up in their system to a daily crash and excessive wholebody vasoconstriction. It is stated that this variety of POTS would result in cerebral vasoconstriction which can cause visual disturbances and migraine aural type symptoms.

Some doctors dont believe this accounts for any form of POTS because several studies have demonstrated that all POTs patients have some blood pooling which seems paradoxical with the hyperadrenergic variety which should result in vasoconstriction and very high blood pressure.

These doctors believe that all POTS is a reflex response to pooling and in some patients it just presents my hyperadrenergic than others.

One alternative structure for POTS is the Low Flow, Normal Flow and High Flow break up used by Dr Stewart in NY.

From his work so far it is suggested that low flow pots is from excessive vasoconstriction caused by elevated angiontensin II and decreased nitric oxide bioavailability.

Normal flow POTS is where the pooling causes purely in the stomach and may be the result of inflammatory markers in the stomach area releasing excess nitric oxide and causing vasodilation there. To compensate these patients have excessive vasocontsriction of hands and feet on standing and when symptomatic.

High Flow POTS is the autoimmune variety - autoimmune antibodies attack and damage nerves in the lower body reducing the bodies ability to release norepinephrine and constrict.

the point im trying to make here is that different causes could mean very different treatment protocols and what might help one greatly may worsen another. (As an example if you had partial dysautonomia, caffeine would boost blood pressure and constrict arteries, lessen pooling and elevate your symptoms which would all be reflex means of restoring blood flow to your heart and brain - whereas if your problem was purely hyperadrenergic, caffeine would make norepinephrine active even longer than it already is, worsening the vasoconstriction and the heart rate and making you worse).

Blood pooling looks like your leg is expanded with liquid.

It would be fair to say that if you have blood pooling in your legs you have High Flow POTS/ Partial Dysautonomia and a hyperadrenergic response. Not true hyperadrenergic POTS. The accepted theory for this form of POTS is that it is an autoimmune mediated attack on the lower vasculature (Grubb 2006 and Stewart 2006)

[carinara]

Hi ramakentesh,

i just wanted to say thank you for your long and detailed answer regarding my question about caffeine and hyperadr. POTS.

I live in Germany, and my POTS doctors don?t really search for what kind of POTS i suffer from. When i asked them about

the different types (wich are often mentioned on dinet) they told me, that these categories of POTS are only results of individual

little studies which are not accepted and verified.

thanks again

carinara

[MelissaCrystal]

Whenever I see coffee on TV, I go crazy with cravings. My cravings are so powerful... but I always regret drinking coffee when I give in.

[ramakentesh]

Carinara - on the one hand your doctors are right - the studies are all just beginning. On the other hand, there are doctors that talk about different forms of POTS like it is a proven fact when there is still a lot of mixed data on whether they are correct or not - as an example the hyperadrenergic form of POTS.

Your doctor is essentially right - it is still pretty unclear what are the main causes of POTS although one form where there is pooling in the leg is now accepted in the states as being an autoimmune variety. All the studies on POTS past and current use very small samples (or cohorts as they like to call them) and this causes confusion as sometimes the results are conflicting.

My friend is a medical researcher and he had a good look through a lot of the studies and gave me advice on which study groups were using the best techniques.

melissa - i had a decaf coffee before and i could feel it!! its like 0.3% caffeien or something!

[carinara]

Ramakentesh - you wrote that one form where there is pooling in the leg is now accepted in the states as being an autoimmune variety,

All this different causes confuse me. Like i said, my POTS doctor

doesnt seem to think that a further cause searching is necessary. My Doctor is also working with the POTS Doctors at Vandy / USA and travelles there a lot. Iam really interested in finding out more about my POTS and what is causing it. Like i mentioned before, i do have blood pooling in the legs. But i also have high BP. So how do i

go about finding out now, if i have an autoimmune variety?

By the way. I also cant tolerate caffeine free coffee. I found out, that is because, there is still a tiny little amount of caffeine in

the decaf. coffe. And this little amount just set my symptoms off.

carinara

[jenwic]

I also can't tolerate caffeine. This includes decaf coffee. Isn't there another stimulant-type ingredient in coffee besides caffeine? I think chocolate and tea have it too. Does it start with "th"?

Sorry I can't remember it.

[ramakentesh]

There might be something in decaf as well, because i had some yesterday and it set me off whereas i drank a pepsi today without a problem. Hot drinks can also be a problem my specialist told me. But sometimes i fine with hot drinks...

The best way to find out whether you have the autoimmune variety of POTS is to try and get the autoantibody test.

At the moment the underlying causes dont concern most doctors because the treatment protocol is essentially the same for most types of POTS - although the problem here is that if some of the suggested causes are correct treatments that help one may actually make another variety worse. But its all still being investigated.

That being said, the autoimmune variety responds well to mestinon so it might be worth mentioning this as a reason to follow it up with your doc. People with EDS also get leg pooling. High blood pressure just means that your body is overreacting to compensate for the pooling.

Id check either Dr Blair Grubb's knol on POTS or some of Dr Stewarts work at:

http://www.nymc.edu/fhp/centers/syncope/ci...ots_and_CFS.htm

I read recently that there was a research proposal from the Vandy where a group from there were trying to investigate whether POTS patients are some how causing their own symptoms psychologically. So that would tend to suggest to me that they may not be up with some of the latest developments in POTS. They are also currently researching the onvolvement of nitric oxide - something that Dr Stewart has already investigated.

[carinara]

Thanks ramakentesh, next time i see my family doctror i will ask her about an autoantibody test.

You wrote that people with EDS also get leg pooling and i also read the link you mentioned.

It said that: 2) Normal Flow CFS/POTS is characterized by normovolemia and normal supine heart rate, peripheral resistance and blood flow. Upright, splanchnic vascular regulation is abnormal producing venous pooling, intense peripheral vasoconstriction and acrocyanosis. Patients are often hyperflexible and may fulfill criteria for the Ehlers-Danlos Syndrome.

Well, i am not really hyperflexible and i don?t really have many other criterias about EDS. and when i asked my POTS doctor about

EDS and if he thinks that i might have it, he also

said that he doesnt think so.

I don?t really now how to go from here, its like fighting windmills. I (like many of you) have to inform and teach my family

doctor about ths illness and about necessary checks and blood

draws and so on. So i have to make my own "searching plan"

For the past 2 years i havent really searched about other causes because i was just so relieved when i got my diagnosis in 2007.

Last November i had an appointment with the POTS specialists in Germany

they did lots of test with me and they confirmed once again that

i have POTS but that was it.

But me reading so many Posts on here

and finding out about underlining illnesses, i really want to

search and find out as much as i can. Who know, maybe i find

something that can be treated and then makes me feel better:-),

carinara

[Amber]

I can't do coffee, tea or caffeinated colas. Chocolate even gives me trouble. Tachy, shakes, short of breath, nausea, lightheadedness and overheating result. Then later the fatigue kicks in worse than before. For me its not worth it. I feel like I'm running a marathon and even laying down doesn't help. I envy those who can....sure would be a nice pick-me-up in the morning.