POTLUCK

I am in the medical field and this is not the first time I have abreviated something people do not catch so I apologize. TLE is Temporal Lobe Epilepsy. this is a type of Partial Seizure. Partial Seizures can be simple or complex. The difference is complex has the automatism's I believe, which are like lip smacking etc. The poor man's EEG might be asking if anyone has had smell, taste hallucinations, deja vu ( or similar Deja Vecu, Jamais Vu, Jamais Vecu - things like being in a place that you have been but it feels unfamiliar that are similar to deja vu ) smell hallucinations are nearly pathognmonic for seizure activity ( meaning nearly 100% ) These episodes, if seizures last 30 seconds to 2 minutes with a max of 30 minutes. One of the EEG's I had that was positve was an extended inpatient EEG, with video monitoring. The thing is with simple partial seizures nothing should show up on video, but I do have positve seizure activity, with multiple episodes while I was their.

POTLUCK, I don't see the individual numbers of NET levels of the POTS patients. However, it was a low average with a very low standard deviation suggesting that pretty much all the POTS patients had reduced NET. EDIT: they might have posted it in the online data supplement, I don't have access. Yes it is exciting to know what likely is causing the POTS, however there isn't a well defined treatment available to go with that thought. I believe by suppressing the cytokines with immune drugs it could boost NET levels by the Hand2 pathway, but that is something that would need to be experimentally verified. Looking at this abstract and another from this group and I was wondering again about the Histone Deacetylase (HDAC) inhibitors http://www.landesbioscience.com/journals/cc/BaylesCC9-22.pdf http://en.wikipedia.org/wiki/Histone_deacetylase_inhibitor

Yes several EEGs that were positive for TLE

This was a tough question for me. Without b-blocker I can't function. Exercise is supposed to be very beneficial. For a normal person your maximum heart rate is ~ 220- your age= Cardio zone is 80% of this. But this is very different with POTS with much higher heart rates. I can easily run 10 points higher than my calculated max, even with B-blocker slowing down the heart. I started at Propranolol ER 80 mg twice daily and have been decreasing by 20mg every 2 weeks, while trying to run 10% more each week. I simply try to run at a pace I can do because a slow pace can still raise HR alot. My cardiologist said it was OK to run over my maximum HR, and I have even had a stress treadmill ( where I went 27 beats/min over my calculated max before they stopped me ) so I feel pretty safe doing it, but it wears me out. I am down to Propranolol ER 30mg twice daily - starting yesterday, and hope to do 14 miles this week.

I need to have a HR I can deal with. Off B-block in Feb I was tachycardic ( just over 100 at times lying, even sleeping ) and it bounced rapidly up and down as high as 156 and as low as 80 standing, and on tilt test. The cardiologist POTS doctor seemed intrigued but just attributed it to the POTS without really explaining if this is something he has seen in other POTS patients. Anyways the exercise has ( so far knock on wood ) allowed me to decrease the B-block markedly ( as above ) and I am not even tachycardic standing, not to mention lying where it is even lower. I am back to work and can not afford to jeopordize that so I have the philosophy of NMPotsie that I will take them as long as I have to, but hope not.

I have been diagnosed with Temporal Lobe Epilepsy.(TLE) ( Complex Partial Seizures ) since 20 years ago. I was diagosed by the doctor who discovered the Seasonal Affective Disorder and he said I have this (TLE) along with Seasonal Energy Syndrome (SES) a diagnosis distinct from seasonal affective disorder, 20 years ago. He sent me to neuro for an EEG which showed TLE and put me on medication for TLE and SES. Then I was fine for 20 years. When I developed this "dizziness" and trouble thinking etc. 3 years ago, that is relieved by the direct sunlight hitting my eye I though maybe it was this SES seizure disorder. Cognitive difficulty can occur with it. I went to several Neuro and inpatient EEG was also done. These show multiple continuous abnormal waves. It was after this that the POTS was identified. I do not know how these problems tie together and have not yet found a doctor that can explain it.

Issie, I do not think the mito cocktail was affecting my sugars, just want a couple weeks to make sure. The sugars are still a little high. I am going to add a sulfa drug or some insulin in conjunction with my doctor.

My understanding is that some of the exercise programs recommended are without meds. I have been on Propranolol LA 80 mg twice daily and tapering by 20 every two weeks. This week I tapered from 40 twice daily to 40AM/30PM. I am running every week since starting this plan several months ago and trying to increase the running every week.

POTLUCK, I don't see the individual numbers of NET levels of the POTS patients. However, it was a low average with a very low standard deviation suggesting that pretty much all the POTS patients had reduced NET. EDIT: they might have posted it in the online data supplement, I don't have access. Yes it is exciting to know what likely is causing the POTS, however there isn't a well defined treatment available to go with that thought. I believe by suppressing the cytokines with immune drugs it could boost NET levels by the Hand2 pathway, but that is something that would need to be experimentally verified. I do not know much about this. I tried googling Hand2 and NET to learn a little more and found this article. It looks like the gene is something the body uses in development, that is maybe accidentally being turned on by injury. ( As they mention this in abstract. ) It looks like a while before the immune drugs will be tested, especially with cost being a huge factor. http://www.ncbi.nlm.nih.gov/pubmed/21241805

The third article presents a different way that sunlight could additionally be affecting POTS in that it affects nitric oxide. There have been many discussions on Dinet forum about nitric oxide and the effect on POTS. I found this very interesting. The sun could easily have a reverse effect on a person depending on whether increasing the NE and Epi makes them feel better or worse. Thus it could make one person feel better and another worse. I do not notice environmental effects much on my illness. The sunlight is one very clear cut effect. ( This is why I chose my picture ICON ) I always feel better in the sun and worse in a very cloudy period, and it is a very rapid change. Hours, even minutes, not days.

Wow!

This article was not published till June 21, 2012. At least you are staying on top of things Jangle! I do not think I can read the full article. It looks like maybe I can access it for 1 day for $20. I do not know if I could print it if I can access it. Did the POTS patients in the study show expression of the NET gene that overlapped with the normals and how much difference? This is very interesting, as it actually shows something wrong, or not functioning in all POTS patients that results in the postural tachycardia etc. Even if the thing that is wrong is a result of more than one etiology. Epigenic Modification of the NET gene could even be a normal healthy body response that has gone wrong, as is the case in most illnesses. In my own case being on the Propranolol LA 80 BID for over 20 years ( for tremor/ blood pressure ) might cause the body to try to correct what the body sees as incorrect by epigenic modification.

What I find interesting is the way the mitochondrial genes can be physically changed by outside things ( like trauma in the case of PTSD. )

Ubiquinol cost me $60 for 60 200mg capsules = $60/month = $720/year. Not covered by insurance. Anyone get this cheaper?

Issie-my fasting sugars went up so I stopped the mito stuff yesterday for a bit till I can see if there is a connection. I figure no rush to get on it. Meanwhile, I am continueing my slow tiration down on Propranolol ( now from Propranolol Long Acting 80 mg twice a day to only 40 mg twice a day- I have cut my dose in half !!! along with cardiac exercise - now at 10 miles running per week. )

General information on PTSD not meant to agree or disagree: PTSD is normaly caused by a trauma outside the realm of normal human experience. This is in fact a requirement for the diagnosis. The percent of individuals who will develop it increases in proportion to the degree of the trauma. For example an individual who is raped has an increased chance. An individual who is raped in a more horrific way is more likely to have PTSD but still not 100% will. For another example those soldiers who experience combat are more likely to develop PTSD than those who do not, those who witness trauma to a friend ( such as explosive injury next to them ) are more likely yet to develop PTSD, those who are captured by the enemy higher yet, and the % who later develop PTSD for Prisoners of War with time approaches the 90 % range. There are many studies of this. This shows that although some people may be less likely to develop PTSD from a trauma and some less likely to develop it, given a strong enough trauma nearly all people will develop PTSD. The symptoms of PTSD do not include changes in HR with standing. POTS patients usually do not experience reocurring thought of their trauma, avoid thinking about their past trauma, have flashbacks of their trauma, startle easily ( might be seen in POTS due to the adrenergic system being on high ) There is absolutely no reason why a person could not experience PTSD and POTS. I also agree with dizzy to be very careful about presenting any slight possible idea to physicians that POTS has to do with psychiatric illness as "some" doctors seem to jump to the conclusion it is all in our heads!

Lemons, I am back to work. I find sitting is of course better than standing, and of course salty snacks and fluids. But I find walking around a bit frequently helps me. Usually others appreciate it as I end up walking somewhere as part of the job, and it gets the blood moving. Congratulations on your job.

Welcome

Good luck Issie, whether it works by Dr. D stuff or something else.

Chaos& CfMartin78 thank you! Issie- he told me to take Coenzyme Q10 ( which I have heard is better as Ubiquinol, the reduced form, and may halp in many ways other than my mito ) 350mg/day, Carnitine 3gm/day, Vitamin C 4500mg-which seems insanely high, Riboflavin 100mg, and Thiamine 300mg. The mito cocktail may vary with disorder though. Rama- I am glad you replied to this as I do not know what to make of it. Mito disorders generally have a deteriorating course. He says I have an " Electron Transport Chain Complex 3 " disorder based on biopsy cultured fibroblasts showing lower activity ( 20% of normal ) than controls, but I am unsure how serious to take this. For example are the activity results age corrected, as an older person is likely to have less activity, and more controls will come from younger individuals etc. How does this connect to my Diabetes and the onset of diabetes with the onset of "POTS" symptoms in 11/2009. Can diabetes effect ETC complex 3 activity sometimes. And the real kicker is why do my symptoms improve in direct sunlight and worsen on cloudy days. The POTS doctor and the Mito doctor cannot explain this, but it seems like the most important aspect of the ilness. ( And I was given the diagnosis of Seasonal Energy Syndrome with Temporal Lobe Epilepsy 20 years ago and have been on medication since ) My point would be that maybe my Seasonal Energy Syndrome IS MY PROBLEM, and the biopsy results showing Electron Transport Chain Complex 3 to be defective are just due to this. This is not esoteric by any means, as a mito disorder with deteriorating course is a terrible thing. The mito doctor does not really offer any information other than the biopsy results and a 6 month follow up.

Soap, Sorry if I was not clear. The Propranolol slow release brand name is inderal Propranolol LA or long acting ( the generic is ER or extended release ) I am in the medical field and use abreviations like that alot without thinking about it. I do not know of any reasons against being on it, in answer to your question. I was on it for over 20 years for tremor, and am considering the posibility only, that it may have caused my beta receptors ( that it acts on as it is a B-blocker ) to be more sensitive - like the body trying to fight its effects, and now going off it may have caused my POTS, sort of like a dependence to it. I HAVE to take it twice a day or my heart rate is too high, yet want to slowly, slowly taper my dose. You are correct in saying that it does not come in a dose lower than 60mg, so I made my own by splitting an 80mg long acting capsule. The litlle beads in side the capsule are the long acting part so it should still be long acting and roughly 40 mg when I put it in 2 capsules.

SoliDeoGloria I am sorry I missed the question earlier. I am not sure which article it was. I will post these 3. http://www.ncbi.nlm.nih.gov/pubmed/3666056 http://www.ncbi.nlm.nih.gov/pubmed/465621 http://eurheartj.oxfordjournals.org/content/early/2010/03/09/eurheartj.ehq069.full Well this Melatonin one is interesting and relates too http://www.ncbi.nlm.nih.gov/pubmed/16682846 I have a MAJOR interest in this subject as sunlight relieves my symptoms better than anything and no doctor even tries to explain this except for this Seasonal Energy Syndrome/Temporal Lobe Epilepsy diagnosis I recieved.

Mytwogirlsrox -I am running 5-6mph ( 10-12 minute pace ) I was trying to increase my speed as I feel good about myself when I go faster but was failing as I get to sore, so now I am going slower 11-12 minute/mile and trying to increase 10%/week in distance not speed. Not only has the HR come down overall ( lying and standing ) but I have been reducing the high dose Propranolol ( from start of 80 twice a day to 60AM and 40 PM- thus I am on 62% of my dose just a few months ago. ) Propranolol LA does not come in smaller than 60 even in generic. If I do not take the long acting and take it twice a day my HR goes way up. The compounding pharmacy would not make the 40's for me, but offerred to give me empty gelcaps so I could split a Propranolol LA 80mg into two 40mgs. It was challenging but kind of fun. Bren- I had my first POTS symptoms- " dizzy feeling and blanking on words" the night after a 10 mile mountain hike with a 3200 foot total gain. I have wondered if my Beta- receptors could be hypersensitive due to 20 years of Propranolol blocking them and the running while reducing Propranol might be helping to reset them correctly. It is all speculation. But at least it is helping now

Prior to my POTS diagnosis when I felt dizziness was caused by Temporal Lobe Epilepsy/ Seasonal Energy Syndrome the doctor who gave me this diagnosis said he believed it was a mitochondrial disorder and I began looking into it. Labs were abnormal including Free Carnitine-low, AcylCarnitine C2 C14, C16 etc. many above normal, ammonia high, many repeat CPK high but not sky high ( ~ 3-5x normal ) Mito geneticist seen- did skin punch biopsy based on above abnormalities and clinical suggestion such as epilepsy, DM 2. The biopsy Fibroblasts showed an " Electron Transport Chain Complex 3 " problem with output 20 % of normal and increased mitochondria overall along with increases in other areas which the specialist says is an attempt by the body to compensate. He gave me the top secret mito formula I have only heard of till now, which is Carnitine 3g/day, Coenzyme Q10, and a couple vitamins ( C, Riboflavin, and 2 others ) I have not picked it up yet but I think the insurance will only cover the Carnitine. He did not sound very hopeful it would do much to help me.

To add my 2 cents. The pheo levels would also be much higher. Like 20 x normal. ( As an aside my levels came out SKY high and the endo thought I had pheo, pheo specialist thought I had pheo, MIBG showed pheo, CT did not, another radiologist read CT as having small pheo at exact point of increase on MIBG ( 7mm in exact location on L adrenal gland of increase on MIBG ) The repeat catecholamines were much closer to normal so looks like I do not have pheo just medical bills. )