POTLUCK

Ignorance from your doctor is more upsetting than from just anyone. Sorry to hear. Usually tends to make me angry. Just wish they had to go through a week of what you have to live with.

It looks to me like they are just trying different medicines anyway and it is not clear that Hyperadrenergic POTS has a different etiology than other POTS. One root etiology might cause both in one case and a different etiology might not. Dr. Grubb seems more directed at treatment vs research and yet you yourself pointed out his whole clinic has averaged 60 Hyperadrenergic patients per year, thus not a lot to base conclusions on. Maybe use your probable type of POTS, as a guideline towards choosing medicines.

There seems to be a large mixture of opinions on exercise, probably due to the different causes for POTS. I am continuing to run. 8 miles per week and trying to increase by 10% per week. I have not had a crash problem like some ran in to, at least so far. Fainting has never been a problem for me. My POTS is improving tremendously. I have no idea if this is a cure or a treatment of the symptoms. ( meaning I would need to keep running to keep them away. ) I do still use high dose beta blocker ( Propranolol ER 60mg BID ) It seems to me that it is important that my heart rate is dropping at rest. My lying and standing heart rate, on 20% less of my beta blocker, is 10 beats/minute lower than when I started exercising. - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - My plan is to continue tapering beta blocker while running so HR stays low. I plan to see if a compounding pharmacy will make a Propranol ER 40mg for me, as it is not commercially available below 60mg in the long acting form. I seem to need the long acting and need it BID not just daily or it wears off.

I wondered about the heart rate question Jangle as I recall you posted this article on exercise http://hyper.ahajournals.org/content/45/3/391.full suggesting this formula training heart rate=resting heart rate+(heart rate max −resting heart rate) ×0.6±5 bpm. Calculated maximum heart rate can be roughly calculated for a non-POTS person as 220-age. However, my maximum heart rate when I did a stress echo treadmill was much higher than this calculated number off meds. Also my propranolol slows my heart rate now. So I figure I can not use a formula very well. I am just unsure if I should go for more distance or speed in trying to build up. I am finding it is helping though. So far about 6 1/2 miles per week ( done split 3-4 days ) and trying to increase distance by 10% per week.

goldicedance1 Thank you for all the info!

Dizzy-Dr Low did something on this briefly in a video someone posted on here. About how epilepsy can affect the autonomic nervous system, or low oxygen can cause the epilepsy. He did not give a lot of info. I have had the Partial Complex Seizure Diagnosis ( Temporal Lobe Epilepsy ) for 20 years and have seen in many sources that it can affect the autonomic nervous system. I never thought it was affecting my autonomic nervous system before my dizziness started in Dec 2009, but I was also on Propranolol BID the whole 20 years for tremor from the antiepileptic. I do not know the actual mechanism of seizure affecting the autonomic system.

As some of the comments mentioned very serious things, I just wanted to note that the WBC is not very low, and also to note that lots of fluid prior to a blooddraw can lower your WBC. This is not to suggest not getting workup the doctor recommends.

Does this medicine work better if you have a certain type of POTS. I just saw a study on it and did a search on Dinet forum and it does not seem like a lot of people are taking this. Also I heard it is expensive. Does insurance cover it in the US anyone? Are their a lot of side effects? I don't think I would take it now as just trying to stay at work and not rock the boat, but maybe later, and would like to learn more.

I think they are significant in my case. You could check what the name for the spikes was.

http://www.ncbi.nlm..../pubmed/7821273 These spike wave discharge, among other types of discharge showed up on my inpatient continuous monitoring EEG. I was told these ones were insignificant despite being pervasive thougout EEG by the neurologist. The others she could not explain, so gave me epilepsy diganosis again ( diagnosed 20 years ago ) of Temporal Lobe Epilepsy.

Diurnal variability in orthostatic tachycardia: implications for the postural tachycardia syndrome No it does not seem to cut and paste. If you want to look it up I guess you could google the above title. It is in Clinical Science (2012) 122, (25–31) (Printed in Great Britain) and looks like th Vanderbilt people.

http://submit.clinsci.org/cs/122/0025/cs1220025.htm that did not work, sorry I'll try again. Article this year on diurnal variation in POTS

http://submit.clinsci.org/cs/122/0025/cs1220025.htm

I am continueing to exercise via running and walking, and have cut my Propranolol from 80mg LA twice daily to 60mg LA twice daily without increasing HR or Lying to Standing difference overall. I am doing about 6 miles per week running ( ~3 times per week ) and trying to increase about 1/2 mile per WEEK. ( It seems I should be able to increase faster but I get fatigue, and soreness later, which I do not understand. ) I started with fast walking mid April , and increased to Run/Walk in May. It seems to be helping me, as I am definately doing better.

Runs high. I have Hyperadrenergic Diagnosis and I have never had syncope. When doing poorly it can be Systolic 155 and Diastolic 110. Usually fluctioating up and down minute to minute with pulse, where, as one goes up the other comes down. ( for example 155/95 and next 135/110 ) Lately better 100-140 systolic and 80-90 diastolic, as I have been doing better. More stable Lying than standing.

I have noted this in other posts but, in my case with an abnormal EEG for Temporal Lobe Epilepsy I suspect this relates to the problems. The hypothalmus is in the Temporal Lobe. The Superchiasmatic nucleus of the brain is in the Hypothalmus. The Superchiasmatic nucleus of the brain is the master clock which regulates the internal clock of every cell of the body. It is set each day by the sunlight which hits the ipRGC cell of the eye. In my case I believe something is not working right with this.

Hi Carrie, A belated welcome. I was wondering about that MTHFR-TT gene mutation myself a while back. Isn't there variations in the severity, homozygous and heterozygous and different gene causes. If I recall right it affects the metabolic pathway to use folate and it might be best to use methyltetrahydrofolate, which the body can use. ( I noticed you were taking the B12 and folate supplements. )

Katybug, Can't Lyme disease cause seizures and particularly Complex partial seizures ( Temporal Lobe )?

I have a diagnosis of Temporal Lobe Epilepsy ( Complex Partial Seizures ) This is based on 2 prior EEG's showing TLE along with an older test called a BEAM ( Brain Electical Activity Mapping ) test. This is a quantitative EEG where a computer adds things up. It is not used as much now but was when my diagnosis was made 20 years ago. I have been on antiepileptic RX 20 years and was given Propranolol for the tremor from the antiepileptic 20 years ago. TLE causes autonomic symptoms frequently, and these symptoms of course are the same as the POTS symptoms and may be the cause of the POTS symptoms. In trying to find my answers to new symptoms in the last 2 1/2 years I saw Neuro ( epileptology and others ) and they did an inpatient continuous monitoring EEG. This showed abnormal EEG waves. The problem is that EEG's are not just positive or negative. It is like interpreting waves on the ocean. The cutoffs are only considered significant if you are symptomatic at the time. They debated over this and my impression is they really did not want me as a patient. In the end I was given an Epilepsy diagnosis, which I already have, but a follow up 2 months later. I do believe Temporal Lobe Epilepsy diagnosed 20 years ago ties in with my POTS now. This and the sunlight via a diagnosis called Seasonal Energy Syndrome I recieved 20 years ago. I do not know exactly how it all connects but am trying my best to piece it together and more important get well. Katybug, my advice is be careful which neuro says there is NO seizure activity. One major center world renown told me there was no seizure activity on my inpatient EEG when they reviewd it ( of course they also said I had no neuro problem and missed POTS ) but when I pointed out specific names of types of abnormal waves and percent of the population that has that type of wave which is incredibly low, they admitted those EEG waves were there ( and put them all on there report ) but said they were not the cause of my symptoms ( though they did not say that part in writing. ) I have had a negative experience with many of the medical professionals I have seen.

( Just posted this under newer thread Beta Blocker ) Sorry to post twice. I am on Propranolol ( Inderal ) LA 60 mg BID ( total 120) I was on 80 BID but have managed to taper to 60 for now. I have not found anyone on this site on as much of this, but I was not originally put on this for POTS and it may be part of my POTS problem. After tapering off of it this year, under the doctors slow taper, my symptoms were awful I had to go back on it. Prior to this I was on Propranol 20 years for an incidental tremor, and later mild HTN and was only diagnosed with POTS this year, and have only had POTS symptoms for 2 1/2 years. I cannot use Propranolol, even the long acting under the recommended once per day dosing for the long acting. ( for instance 120 LA once instead of 60 twice a day. ) This is because it drops my HR quite low initially and then it rises back up by 24 hours to a resting tachycardic point.

I am on Propranolol ( Inderal ) LA 60 mg BID ( total 120) I was on 80 BID but have managed to taper to 60 for now. I have not found anyone on this site on as much of this, but I was not originally put on this for POTS and it may be part of my POTS problem. After tapering off of it this year, under the doctors slow taper, my symptoms were awful I had to go back on it. Prior to this I was on Propranol 20 years for an incidental tremor, and later mild HTN and was only diagnosed with POTS this year, and have only had POTS symptoms for 2 1/2 years. I cannot use Propranolol, even the long acting under the recommended once per day dosing for the long acting. ( for instance 120 LA once instead of 60 twice a day. ) This is because it drops my HR quite low initially and then it rises back up by 24 hours to a resting tachycardic point.

I am certain that the Sunlight ( directly ) makes my symptoms better. Cloudy days are worse. I think at night after normal sunlight hours I am also better. It may be related to a newly discovered type of photoreceptor in the eye called the ipRGC ( intrinsically photosensitive Receptor Ganglion Cell) - can be found in Wikipedia. This cell is not used for sight for the most part, but picks up light just like the Rods and cones. It controls circadian rythms in the body via a part of the brain in the hypothalmus. ( Superchiasmatic nucleus ) (SCN) These circadian rythms affect the autonomic nervous system so there is no reason to think a problem with this system could not affect everything affected by the autonomic nervous system ( i.e. those problems seen in POTS ) I do not have a clear paper presenting sunlight as having an effect on POTS. However, they have known about Rods and Cones for hundreds of years but only discovered ipRGC cells in the last 10 so it is not hard to believe they will not clearly establish this connection for years. I do have papers on the circadian rythms of NE and Epi and on the effects of the sunlight on ipRGC cells on the SCN nucleus and via this on the autonomic nervous system and circadian rythms of every part of the body. ( The SCN is the brains, and thus the bodies, master clock. ) I just mention all of this because I have spent a lot of time trying to understand my own symptoms which are strange to me in that I am helped by sunlight. The ideas suggested above seem like important things to rule in or out if possible via lab testing etc. through your doctor.

The sun is like charging a battery for me. I feel better, more energetic in it, often within minutes, and it has a lasting effect of hours or days, during this time I have far fewer symptoms ( not as much dizziness, cognitive problems/brainfog, temperature regulation control issues, GI problems etc. ) It realize that this is not a normal published characteristic of POTS. The POTS specialist just puts down that he has no knowledge in this area in his dictation, thus skipping over it. Also, my lying HR is now at ~ 70 on 10% less propranolol ( LA 80AM & 60PM) than when it was ~110 resting in the winter. I do not know if the sun is helping but it sure seems like it. ( Other possibilities include exercise, combination etc., but no additional new medication. ) That is a decrease of 40 points in lying HR on slightly less medicine!!

It does seem like maybe the reason some do better and some worse has to do with the opposing types of vasodilation or vasoconstriction in different types of POTS and the sun may help the low flow type by vasodilating via nitric oxide etc. at the surface and also a direct eye effect by speeding the heart up via NE and Epi. I do not have the mast cell stuff. ( I do not think ) but there may be some other effect of sunlight on that, explaining the effect of sun on your sun ChristyD ( it's a possibility ), that might even have to do with the differing effect on a different diet? Anyways, just because the medicine books do not have the answer does not mean I do not believe it is having an effect on me I will tell you that much. The main thing I have learned being sick is how little is known in medicine.

Thank you everyone, This is really an amazing web site where people can get support and work on finding the solutions to their illness at the same time, with an illness that is very hard to get answers to and that the medical community does not address well enough. There are so many patients with this illness and so few doctors that even know about it not to mention specialize in it. I know personally I have gone though so much frustration with the medical community. Fortunately many of the people on here also appear to have a medical background. Relax86- I find the coffee in the morning and getting moving right away along with sunlight driving in to work helps. Of course driving is better, because I am sitting not standing and leaning back. I find the best thing I can do is to sit back ( or lie down ) or to be moving, not standing in one place. I am trying to exercise after work and day/s off as much as possible without overdoing it. I do not think I ever had as much of a problem with fatigue in response to exercise as some peope with POTS but it seems there is more next day fatigue etc. than there should be, so I try to use caution. Anyways, for now it is working and again all the support is so very much appreciated! I hope everyone can find their answers.