POTLUCK

So I was thinking about this. Running has always helped my POTS. It seems to have helped over time. However it has always also clearly helped in the short run. The day after exercising my heart rates are lower and my symptoms are better. I realized that when people on here are talking about improving with exercise they are talking about after long periods like months. Does anyone else notice an improvement in either HR's lower and/or decreased symptoms in the short run-say later in the day, or the day after cardio exercise? Maybe there is a different cause to my POTS. The cardio diagnosing it via tilt test does not really seem to be thinking about the cause of specific peoples POTS, just an overall cause.

You know I really do not know if this is normal for POTS. Maybe I have a different cause for my POTS or something.

I just posted a " Circadian Rhythm Question" about this, but my question here is-when your symptoms are the worst, are your heart rates also the highest? Mine are, and follow a circadian rhythm (or did till recent RX) Also high HR is not a cause in itself of symptoms because if running (which I am ok with) HR goes much higher but symptoms (light headed, pounding heart feel) do not increase.

( I am now on a RX MAOI for depression which has really confused my HR's) My question is really about prior to this: Prior to this my HR was always highest in the morning-well above 120, and my symptoms were the worst, and lowest in the evening -often near a normal persons HR before bed, and my symptoms were the best. I do not faint from my POTS, and my blood pressure is elevated both lying and standing. (Cardio at tilt test said Hyperadrenergic type, but I never had NE test standing) When my blood pressure is lower my HR goes higher, and when I take propranolol which slow the heart at anything except a low dose it seems to make me feel more lightheaded so I assumed that it is lack of blood or oxygen to the brain that signals the heart to beat faster speeding it up. My question is, if this is true, how can my brain get along with a much lower HR later in the evening, and still be less symptomatic! Put another way when the heart speeds up shouldn't the brain get more blood and be less symptomatic not the opposite? This is a rather medical question but does the adrenergic system that speeds the heart constrict the blood flow to the brain, or how does this make sense.

This was very confusing to me and I talked to cardio who treats my POTS. My heart rate when running would go to a number 50 points higher than my calculated maximum HR. I could run 8 miles at one point with my HR average for the entire 8 miles above my calculated maximum for my age. ( i.e 220-age ) That does not mean I was going that fast by the way, just that the HR was way to high. I discussed this with cardio who said it was safe to run at this rate, but he set up aerobic stress test to answer my question of does increased HR mean increased VO2max as they talk of. The problem was when I went to do the test at his own hospital the nurses stopped me when I reached my calculated maximum HR. I was still running and telling them my breathing was not even hard and I could go much faster and this is defeating the test and can't they call the doctor for permission etc. but they slowed the treadmill and would not allow it. I will be interested in your results.

My sleep is terrible. I am not able to sleep in the morning at all. I have trouble falling asleep, waking up and falling back to sleep, and waking up to early. I tried going without sleep one night as I read that is a treatment for depression. The next day was one of the worst days of my life and I will not be doing that again. Thank you again for the support.

My POTS sounds no where near as bad, but I do know my HR goes over 100 when rolling over, and do not see that as high. The blue nails also sounds like Raynauds which I get with the hyperadrenrgic form of POTS, I think from peripheral vasoconstriction. Most important POTS is a syndrome so it may have many causes, see if the doctors can check based on the other symptoms. I hope the above was helpful, it was meant to say that some of the symptoms can be 'safe" and not to minimize a terrible experience. Hope you can find your help.

I talked to a nurse friend who works at the hospital nights and she said patients can sleep through very high heart rates without sleep aides so the high HR itself is not the only factor- this was a question I had myself. A ramped up adrenal system from POTS or other causes such as depression in my recent case, or a combination may explain it but since I am extremely sleep deprived I cannot tell you.

Raisin-thank you. The AM increase in POTS and depression seems to be a circadian rhythm. The large doses of benzo's worry me. The idea that I need to stay on them yet the eventual difficulty with withdrawal upsets me. Mostly just feel miserable on MAOI and off, just different forms of misery.

Very Severe "clinical" depression is better on 9mg patch but POTS is much worse and tremendous anxiety/fear feeling. Am not very functional and sleep is very, very bad. It was with depression also but feel more exhausted now. HR's and POTS symptoms doing crazy things. I would give anything to be off this MAOI with the POTS, but it has been working for the depression. The psychiatrist has put me on 2 mg of Klonopin for sleep and anxiety at night, and this is a huge mistake in my opinion. It only works for sleep, a few weeks per the literature and is a very potent benzo. 0.5 Klonopin=10mg Valium. I have now been on this months, and a very slow (months ) taper is recommended but the symptoms of taper are described as things like " increased HR, anxiety, adrenergic symptoms, and insomnia" Thus tapering it will clearly make my insomnia, POTS, and anxiety symptoms all much worse, but staying on it, it does little to help, and the longer I am on it the harder to taper. The insomnia is worse than ever and the psych now wants to add Ambien. I was on Ambien, which was not working anymore when the depression started and it was stopped abruptly by the psych when the Klonopin was started. This was also a mistake in my opinion. There are very few sleep meds I can take while on an MAOI. ( For example cannot take low dose trazadone, or imipramine) The exhaustion is awful and makes everything else worse, so I may need to take the Ambien but it will stop working with time again and I will be addicted to more prescriptions. Both on and off the MAOI seem unbearable. It is also unclear to me why Klonopin effect lasts only hours, but it stays in your system. Shouldn't it work continuously. The half life is 20-50 hours, so it should be near a steady state level in my body. My psychiatrist does not know this either. It also takes a long time to get a new psychiatrist.

Any results from this larger study yet?

On 9mg patch now couple days. Depression doing better so maybe patch helping. Heart rates are very hard to understand. Similar to described above for 6mg but higher. POTS doc and psych will not talk- wish they would. I am on low dose b-blocker but that and running only things that have helped POTS in past.

I was on propranolol ER 80 mg BID 5 years ago when I started getting light headed like a smothered or choking feeling. Went to hospital twice. They took me off propranolol for a exercise stress test, and I got much worse with crazy adrenaline feel, and went to ER second time. Cardio called to ER for my HR diagnosed me. Sent me to Los Angeles specialist group of cardio's who put me back on Propranol high dose and did tilt test. Said I did not have POTS. I started reading and realized tilt test is no good on high dose Propranolol. I went to primary and asked for cardio that does POTS that I looked up. He sent me but also diagnosed me with anxiety. He did not understand what POTS was. Anyways this Cardio did tilt test off Propranolol (slowly tapered between visits) and I was very positive for POTS with lying HR something like 95 and standing about 155. Then I did slow taper of propranolol with exercise and got down to 3.75mg BID over 2 years but never could get off it completely.

Depression is also worse in the morning (by far) and nonexistent in the evening, which matches the cycle of my POTS numbers and feeling of being worse in the morning and better in the evening. How would one find a functional medicine doctor?

Oh just noticed the after standing significant time-this definitely also makes it worse.

Wow, I thought everyone's symptoms were worse in the morning. Their was even a paper on this diurnal variation. For me I feel best after exercise but I know a lot of people say they have trouble exercising.

Depression is horrible, and hard to hang in there. MAOI Emsam patch is causing HR's to act really crazy and psychiatrist would like to increase patch dose from 6 to 9. HR's are likely to get even worse, and with low dose Beta blocker I am on these HR's will make it even more uncomfortable. This can affect sleep also when adrenaline or noradrenaline go so high, and HR high along with it. The insomnia makes the depression worse and may even have been part of the cause of the depression, and the POTS appears to have made the sleep worse slowly over the years. Worst, the biggest thing helping my POTS was the running and I stopped that with the depression. It is hard to explain the POTS to the psychiatrist, and follow up appointments are only 15 minutes. All of this has caused me to go out of work, and is causing major problems in relationship also. Taking care of POTS with Propranolol and running was just so brittle, all it takes is something like this to just spiral everything.

As noted in previous post I developed Severe depression this summer on top of POTS had for years. Now on Monoamine Oxidase Inhibitor (MAOI) for treatment. Very Weird effects on HR. If anyone has been on this type med with POTS or has any experience with this and POTS respond or PM me please. -------------- My normal blood pressures are elevated lying and standing. ------------- On MAOI my lying HR drops as soon as I lie down lower than it ever has (~66-70), then after a minute to 5 minutes it begins to slowly rise, sometimes pausing but eventually reaching a number (~90-95.) After this it may fluctuate mildly but never goes back to original number while still lying there-or even close to it. My standing HR, after walking slowly to location to measure it, starts lower, from walking -say 110, then rises slowly to a higher number like 140. It normally never goes this high. ---------- Symptom wise it is hard to tell because my POTS symptoms and standing numbers also are always higher in the morning and my severe depression is worse in the morning, but my best guess is symptoms seem worse than previously- such as when had to stand in line short period. -------------- Anyways if anyone has any experience on this type of RX or literature with POTS (MAO includes Emsam patch-I am on, Nardil, Parnate, Marplan etc.

Thank you all for the responses. They are very much appreciated. Blue- Argomelanine is not available in the US, though sounds like a good choice with my insomnia, maybe I could get it online or somewhere. Zoloft caused an intolerable "restless" feel that may have been akathesia. Endep appears to be amytriptiline a TCA that is worth a shot. Tried Lexapro which is one of the dual Enantiomers of Celexa ( Citalopram) and thus likely to have the same side effects. The sexual side effect it caused I also consider intolerable. Tried Remeron to assist but it caused crazy Heart rates at doses above 15- i.e Noradrenergic doses. Looneymom-same on Zoloft. Does the sunlight require petting the kitten? Valiz- Yes I am concerned about the NE effects and have not tried it at this point. Artlover09-same on Celexa as above. Chaos-my understanding is that although Wellbutrin does have a small DA effect it is mostly NE so this may be good news. Not sure what LDN is. Do not know much about methylation issues. Started Emsam patch last week and HR numbers are pretty crazy- lying drops to 70 then slowly rises to 95, standing diurnal variation-higher in the morning as always but numbers are much higher now and seem to slowly rise rather than just go to the spot. Symptoms are hard to tell if worse, as depression and POTS are both worse in the morning and best at night. The depression is very, very bad and unexpected, and I appreciate all the input and well wishes.

Thanks Raisin It is not clear what worked in the past, but it might have be have been Selegiline oral.

Anyone with experience with NE type antidepressants and POTS with high BP lying and standing-"a hyperadrenergic" type? I have developed very severe depression abrupt onset a few months ago. Had increasing insomnia prior but now it is terrible insomnia and depression, and stopped running so POTS is worsening. Hard to tell which symptoms are POTS and which are depression now. SSRI's have had intolerable side effects, and most of the antidepressants to try work via NE, such as SNRI's. I have heard these can increase HR and worsen POTS. Does anyone know? There is not much literature or info on POTS, and Depression as a separate but genuine diagnosis available. Never had manic symptoms but had severe depression many many years ago and not since.

Mine goes up and down without a clear pattern of how high or low. I used to measure with a blood pressure cuff so did not realize how much it fluctuates. the nurse in one of the doctors office used my finger meter to prove to me that everyones does this and hers stayed at 71 perfectly, and standing up. I did not know someone could have a standingcvpuse this low. My pulse has been running as high as 121 in the morning and 113 in the evening but as I said bouncing. It is always higher in the evening than the morning.

Did anyone hear anything on the larger study?

Beta Blocker (Propranolol) definitely lowers my standing HR more than my resting HR (i.e. decreases the difference between the two.) I do not necessarily feel better on a larger dose despite more improvement in the numbers. Without the small dose my standing HR and HR in reaction to things feels awful like it is way too reactive. Tried Clonidine and it made my HR go all over, even the ER form. Tried the patch but did not like the feeling on it- would have to say it was like the HR reacted to my own feelings more, best I can describe it, anyways did not like the feel at all and stopped it. I found this thread very interesting as it seems people react very differently from each other, and this is not apparent in studies of groups (i.e. articles on POTS)

Will be interested to hear if it has an effect on you also Chaos and thank you both for the info.