POTLUCK

NMPotsie- One of the times when I was quite bad and went to the ER for my POTS ( before I even heard of POTS but after symptoms started daily in fall 2009 ) I was trying to describe how I felt to the nurse and said it is like my head is spinning back and forth and I blank on things, can't think of words, it is like having a hangover. The nurse wrote in my permanent record " Patient reports he feels like he has a hangover."

I have been to Mayo epileptology. I initially felt my symptoms might be due to Temporal Lobe Epilepsy, and had not even recieved a diagnosis of POTS. Mayo Epileptology ( Neuro ) was not helpful to me. I had to really push them to get them to look at a disc I brought of inpatient video monitored EEG. They wanted to do an inpatient video monitored EEG, yet were ( initially ) unwilling to look at the results of the test done the same year elsewhere. I have more I would like to say, but I think I am limited in what I can say here so I will just comment that I personally do not recommend the Mayo ( Rouchester Minn.) Neurology Epileptology section. Not having "true seizures" does not mean you do not have "true epilepsy" if it is Simple Partial Seizures which do not have a physical seizure component. These seizures in the Temporal Lobe are very common and cause a variety of effects in different people. ( As they are occurring in different locations of the temporal lobe of the brain. ) As I noted they are not easily detected on EEG ( ~40%) or even video monitored continuous EEG ( ~60%) so it would be hard for him to say you do not have them.

neurologist

Angela-certainly sounds like they may correlate to me. Are you seeing a neuroogist?

Relax86 glad your 80-85% better.

Zap-Propranolol inhibits Melatonin release http://www.ncbi.nlm.nih.gov/pubmed/10335905

Jangle I took a look at abstract for above, but cannot pull up full article on PubMed. Thank you. This is certainly another factor. This entire system of body control over vasoconstriction and dilation, allowing for exercise, seasonal control, allowing blood to reach all parts of the body and keep one warm in the winter yet cool in the summer, and protecting core body temperature in crisis is incredibly complex. Then there is the immune system which works in sync with this to allow increased or decreased blood flow to certain areas as required for body defense. And the question we are asking is which part is not working right.

Batik- When I am doing badly this is what I experience. I also get cognitive difficulties, can't think of a word, or thing I want to describe. Can't figure out how to say what I want. Can't recall what I'm in the middleof writing etc. Some of the other things mentioned sound like the ictal phenomenon that goes with Temporal Lobe epilepsy. In those cases ( like floating sensation, and feet being sucked through the floor ) does it last 30 seconds to 2 minutes with a maximum of 30 minutes. That is suggestive of Temporal Lobe Epilepsy ( Simple Partial Seizures )

Sorry to go off your topic on lights puppylove- Isssie this is from other thread- 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.

Cheers, I'll drink to that. I have no trouble with a drink or two but seem to have problems with more dizziness and with worse hangover if I have a lot of alcohol, where as I would have been fine with an occasional heavy drinking night before POTS. Doesn't seem like a big loss overall.

Issie-you responded to my thread about mito dx " I have been diagnosed with Mito disease by biopsy now " <div class='message error'> <strong>Javascript Disabled Detected</strong> <p>You currently have javascript disabled. Several functions may not work. Please re-enable javascript to access full functionality.</p> </div> <br /> Batik-Dx made 20 years ago was of Simple Partial Seizure Disorder. Different types- this has no physical seizure. Try Wikipedia for further information. I did not think much of it, but did have many of clinical s/s 30s-2minutes, with a max of 30 minutes and also positive EEGs. Since symptoms I initially called dizziness started for me in fall 09, I initially though well maybe it is this Temporal Lobe Epilepsy ( Simple Partial Seizure ) then later recieved dx POTS, or maybe one causes other, or maybe mito causes both. I just want to be well. <div class='message error'> <strong>Javascript Disabled Detected</strong> <p>You currently have javascript disabled. Several functions may not work. Please re-enable javascript to access full functionality.</p> </div> <br />

I moniter my lying to standing HR with an ordinary BP cuff. I do repeated measures lying, then stand and do repeated measures. I do not count the first minute in each position. I average the others. This gives me a better idea if I have had a drastic change. ( i.e. Better Reproducibility, not Accuracy, for those who prefer a scientific statement. ) I have noticed that dropping my Propranolol will, as expected raise my HR, and increase the Lying standing difference. ( The effect is most pronounced after 3-4 days ) However after running a week or two it returns to where it was. Then I reduce the dose again. I am now on 20mg twice a day but plan to hold the taper a couple weeks as I have some upcoming stress at work, and do not want the plan to backfire on me. ( i.e. I will stay on 20mg BID but not taper further.) I will see if I can pull up above study soon.

Nice post. Thank you. My personal opinion is these things are a little arbitrary and patients should consider their personal situation and symptoms. For example the "strict" criteria for Diabetes has changed over the years and the same sugar level fasting and same Oral Glucose Tolerance Test in years past would not have been diagnosed with Diabetes, but now it would.

I forgot to note that photosensitive epilepsy ( which is any epilepsy that is triggered by lights flickering on and off can cause full seizures or cognitive symptoms/autonomic symptoms without any physical symptoms. ) There is a great deal of literature showing some flourescent lights particularly older ones without an electronic balast and malfunctioning ones that would be mixed in with the working ones overhead, can trigger this epilepsy.

NMPotsie- sorry I missed your question earlier. Yes, the taste of blood can be a "seizure" caused by a Simple Partial Seizure. Gackeko- That is great that treating the epilepsy helped with the POTS. I just responded to PuppyLoves post "Lights Triggering Symptoms" with some more information on epilpsy, and some people were posting about lights effecting their POTS which it seems could be epilepsy.

Flourescent lights bother me sometimes, but not always. Direct sunlight relieves my symptoms almost always. This is an effect to the eye, not the skin. I have written about this many times on here and in my member profile. I believe it may be TEMPORAL LOBE EPILEPSY (TLE). That is SIMPLE PARTIAL SEIZURE DISORDER. I have had 2 quantitative EEG's 2 regular EEG's and a video monitored continous EEG all of which showed seizure activity, and been to several clinics including one world renowned clinic to see epileptologists. I have had a variety of opinions, all agreeing on abnormal activity, with differing opinions on whether it is the cause of my symptoms. I have been on Valproic acid ( which is the most effective of the photosenitiveantiepileptics) since given the diagnosis of TLE 20 years ago. I had no symptoms until 11/2009 when my dizziness and cognitive difficulty started. It may be the VPA is no longer working. I may try some more antiepileptics if symptoms continue. ( Right now I am still using my slow taper of Propranolol and slow increase in running plan. The running part is based on Jangles article with military recruits diagnosed with POTS and forced to run ) I have also been diagnosed with a mitochondrial disorder last month. This is an Electron Transport Chain Complex 3 deficiency ( ETC Complex 3 ) Mito disorders including ETC disorders are known causes of both Epilepsy ( including TLE ) and POTS. I realize this is a lot of information. The main point for this thread was that the lights could be TLE. I wanted to include the other info. as there are so many interrelated parts to this and we are all just looking to find out how to put it together and get well.

I amback to work and have been driving all along. POTS diagnosis is Hyper POTS. Never had any fainting episode but was in terrible shape off Propranolol, now trying to taper it and exercise.

Mayo says: Signs and symptoms of rheumatoid arthritis may include: Tender, warm, swollen joints Morning stiffness that may last for hours Firm bumps of tissue under the skin on your arms (rheumatoid nodules) Fatigue, fever and weight loss

The simple formula to calculate your maximum heart rate for a non POTS person is 220 - your age. So for example if you are 30 your maximum HR is 220-30=190. but if you are 60 your max HR is 220-60=160. They recommend for aerobic fat burning exercise 60-80% of max. They recommend for cardio 80-100%. I agree about the high intensity training. My HR hits 100% of my maximum HR by about the middle of my run and goes to over 120% of my HR before the end of the run. ( When I usualy can not do anymore.) This is part of what I feel may be resetting the maximum HR which would then lower my standing HR relative to lying HR.

My latest theory is that maybe my running ( or any Cardio exercise ) helps improve POTS patients who are able to do it via epigenic changes to the Norepinephrine Transporter Gene (NET). Importantly I do not think the NET gene is likely to work the same at each site. So if I use the heart rapidly ( by running and causing my HR to go very high for lengthy periods of time several times per week. ) then the heart may be readjusting its NET gene via an epigenic mechanism. ( Which is what it may be designed to do.) This would slow the heart to a more reasonable rate when running eventually by continually increasing the running Also decreasing the B-blocker - or allowing the HR to go faster means given the same amount of B-blocker the heart would be used to working slower. The overall effect of this is to maintain my HR at a lower rate when I go from lying to standing on a lower and lower dose of B-blocker. I can not say if this is why it is working but I can say that tapering my B-blocker while increasing my running continues to be highly effective. I have gone from Inderal 80mg BID to 30mg BID !!!! And my lying to standing HR on this dose is under 30, most days under 20 ( The idea I am suggesting here is that maybe epigenic modification of NET in a particular location of the body, rather than just enlargement of the heart as Levine sugests etc. has to do with the beneficial effect of exercise. )

Lisa, Not sure who the question was for, I take VPA, levothyroxine, propranolol. I have a seen neuro and cardio and endocrine ( diabetes and thyroid plus they thought I had a pheo before ) and mito geneticist along with several others like primary care, and been to many top places in the country. I am not sure what I have or how POTS and seizure activity go together. Does one cause the other? Which causes which? Which causes symptoms? Do I have 2 seperate disorders? Are they both caused by the Mito disorder? And most importantly HOW DO I GET WELL?

In fact a normal EEG, as opposed to sleep deprived or continuous monitor has a very low percent for picking up seizure activity.

Angeloz- I think if you speak to a physician knowledgable on epilepsy they will tell you you have Temporal Lobe Epilepsy. The smell of "smoke" or particularly burning rubber is the one nearly pathognmonic. It is more diagnostic than an EEG, as EEG is not 100% by any means.

Wellbutrin is Dopaminergic. Dopamine (DA) is the precursur to the NE/Epi. I have no idea if this would make a difference but certainly seems possible This differs from most meds in this class. Several are NE reuptake inhibitors.

Thanks Issie, You are right I started it 20 years ago for TLE ( Epilepsy ) but do not know if it might have been working by another mechanism. I went off it a couple times during the 3 years I have had this "dizziness" stuff( not listing all my symptoms including abnormal tilt.) I am doing well now so am staying on it.