POTLUCK

Thank you re: P5P. I have been reading up on GABA recently as many of the sleep agents relate to GABA A. I tried the Clonidine mentioned in another thread but that sent my HR wild, even using the ER form, and even with the patch did not like the feel/effect. So many of the POTS symptoms and reactions are simply "weird," i.e. not what would happen in a non POTS person.

My pattern is higher in the morning, and lower in the evening. Generally propranolol lowers overall numbers but not sure I feel better on it.

I was using a BP cuff to measure and it seemed my HR was rather constant but now using finger pulse meter it seems to bounce up and down a lot. Like lying HR can be 70, rise up to 85, go back down part way etc. with no clear pattern so I cannot really say what my HR is. Does the same thing standing. Tonight standing (I am being treated on B-blocker -Propranolol low dose as always) was 102, numbers dropped to 95, then rise again to 109 and drop down again. I cannot really even say what my rates are as they are changing moment to moment. Is this the way other POTS patients measure on a finger meter. I mean if I have written a range here on the web site or to tell my doctor, for my HR I usually meant on different dates and times, measuring my HR. Moving while you watch it, especially while lying down is new to me. Years back when I had tilt test, off all meds, I remember my HR was bouncing (i.e. it would go way up-as high as 156 I believe, and then down and then back up, probably in about a minutes time. It just continued this bouncing, while tilted upright. Are any of these things normal for POTS patients? It is frustrating because the articles I read on POTS talk of averages etc. but not what a real patient looks like in front of you. Another weird thing-normally my lying and standing HR are high, but I have these rare nights where they will drop down to below normal ( or maybe that is normal, but for example a drop to 61 that stayed there for several minutes between 61-63, before going back up. This is on low dose propranolol but without recent dose change etc.)

Goschi-noticed the rolling over thing. I have a finger monitor and the first thing I noticed was how much my HR changes moment to moment, then noticed can go up by 20 by rolling on side.

I have had many weird heart palpitations, pounding, what feels like worms, butterflies etc. These were most prominent when tapering up or down on Beta-blocker, although pounding heart symptoms come at higher heart rates. (actually except when running my HR can go very high and does not feel like it is pounding until it gets far above normal HR-i.e far above calculated max.) I feel like the running is raising it in a good way or something-meaning good in that my body is benefiting at the time from it, rather than reacting to it, but of course who knows.

Also never taken it myself just read literature.

In people without POTS Remeron is less sedating at higher doses (i.e. a paradoxical effect in that one would expect if a low dose is sedating a higher dose would be more sedating) In people with POTS I do not know.

Fluid and lying down also bot help me. Breathing calmly (not sure if meditative) can lower it but only till I stop paying attention and not consistently. B-blockers lower the most, and propranolol seems to work with me the best, but lowering the HR with a B-blocker does not always leave me feeling better. (even though HR is lower) My BP does not drop standing ( I was told Hyperadrenergic type though have not had a standing NE test_) Can your doctor use something that keeps pressure up along with a beta blocker?

This is an interesting thread. SSRI's are mentioned in the literature for POTS, but I wondered due they actually change people's heart rate or just affect symptoms. It is interesting that they do have an actual affect on HR, and appreciate the information mentioned above.

Clonidine did not work for sleep for me, thank you though. It caused HR's to go all over even in the Clonidine ER form and the patch. Clonidine is, as noted earlier a centrally acting alpha agonist. Higher does can overload the peripheral alpha receptors I have read. Klonopin is a benzodiazepine, intermediate to long acting, (Clonazepam) if this helps earlier question. Have not solved my sleep problem.

Does anyone notice time of day when POTS symptoms are worse. Does this match HR If HR differs with times, does lying and standing rates both go up (or down) or just one of the two. Last question, if time of day, are you on a RX that could be wearing of or starting to work.

I do not get low heart rates so cannot comment on that. Insomnia has been worst symptom lately though, actually for a long time just worse lately. Tried many sleep agents, just did sleep study. I know I have bad Restless Leg Syndrome, wake with very high heart rates, and have been told POTS high catecholamines regardless of HR can cause trouble sleeping. I am sure the sleep agends have some withdrawal just to add more trouble in my case. Melatonin is reported to be both a soporific (make you sleepy) in a dose dependent manner and also a sleep cycle regulator so my recommendation if you take it is take it at the same time every night-if that helps.

Although I am making some other changes to my own medications for symptoms now, and do not want to test more than one thing at once or cannot tell what does what, this seems easy enough to test. How long does it take to work, what dose do you take, and does it lower the heart rates, improve symptoms or both?

Agree, send a letter to the state medical board.

well, I guess you could try the propranolol with the water as doc says?

I hear they are doing the follow up study in early July at a conference, so maybe there will be more info. available soon. This topic is very interesting, and may prove to be the cause of POTS in most patients.

Exercise stress test with Echo done. HR went 25 beats over calculated max on test. They said I had a couple of PVC's but were not worried about them and everything was good otherwise. No one has ever explained why my HR can go so fast but cardio's do not consider it to be too dangerous.

I notice Propranolol can have a rapid effect of wearing off in me-might consider that with the change in HR ?? (an idea) but you mentioned the insomnia was prior to the propranolol.

Considering antidepressant, I read that SSRI's were helpful in POTS in general. I have tried just about everything else as sleep aids. Will discuss sleep test results. They take a while to get back. When he was hooking the wires up while I sat in a chair the tech commented something must be wrong cause your showing a 99-100 HR. I said no that's not surprising. Wondering if they will give any info. in results on my HR during the night. I have tested it bedside and even tried a sportswatch while asleep. I do not think the HR itself is waking me.

I am having an awful time sleeping at night and just had a sleep study done, no results yet. They can tell you if heart rates go to high and this wakes you up, PLMD/RLS which is common with POTS etc. but there are limits. My understanding is 25% of pots patients have insomnia but this has been terrible for me.

Good luck and best wishes.

Did clonidine help someone with insomnia? I have hyper pots so might try that for the POTS sometime but never heard anything with sleep. I am having bad insomnia, using Ambien. Gabapenin helping but still trouble. Might consider Trazadone-did not know it lowered BP, might be good for me. I need more sleep for sure.

Have not seen many comments on this recently, but my impression was a lot of peoples HR goes over calculated max. Mine does not go to 250. (i.e. Your calculated max HR depends on age) but goes far higher than my calculated max. I wrote to one POTS doctor who responded that he felt it was OK, and go to another (the Electophysiologist) who felt it was safe to go that high. Interestingly neither doctor thought this was due to POTS, yet the answers here suggest it is related to POTS at least sometimes. I have seen no study or case report mentioning this. Both docs felt it was safe to go 30 points over my calculated max but neither felt I was doing it due to my POTS. I have no idea.

The comments about this study on the Dysatonomia international website seem to indicate they are certain the POTS patients had antibodies and the controls did not. As I said the paper itself did not explain potentials for error on this. Maybe they are certain the POTS patients all had antibodies, but if that is so it would seem most of diagnosed POTS patients will have them, as it is too coincidental for 14/14 at two centers.

Thank you Issie and Chaos. The Mito diagnosis: Electron Transport Chain Complex 3 disorder by biopsy, has been of very little value to me. It really has not helped explain my symptoms, helped with treatment- I am unsure if the supplements do anything (Carnitine, CoQ10, B1, B2, C) These seem to be recommended for most mito disorders. There seems to be almost no literature on this disorder and the doctor who gave it to me is not really able to tell me what it will cause or how soon. Thus, I am unsure that I even fully believe the diagnosis anymore. It has been a couple years since I got it and I do not see things like stomach symptoms that one might notice with increased cell turnover, nor have I seen further cognitive decline as with neurons which are sensitive to mitochondrial disorders. (That is more than you probably wanted to know but the diagnosis has been a frustration, rather than the answer to my POTS that I had thought it would be.)