POTLUCK

Found this article on Diabetes ( which may be due to mitochondrial disease in my case and may frequently be related to mitochondrial dysfunction ) and PQQ. There are many articles on PQQ and mito disorder. I will of course wait to continue other things I am trying. http://www.sciencedirect.com/science/article/pii/S0006291X12020098 Also I have developed extreme Restless Leg Syndrome as I taper off the Propranolol. It gets worse with each dose taper, and is keeping me up and painful even. Thus I started Pramipexole 0.125mg. It is supposed to help with mito disorders via Reactive Oxygen Species (ROS) also.

Issie- I am sorry I meant to write N-Acetyl-Cysteine. I bought a new computer last week and it was skipping all over the keyboard. Figured out it is a problem with the mousepad. The Carnitor is the prescription only Carnitor. That is the only part of the Mito cocktail insurance will pay for and I was actually already on it before starting the rest of the cocktail.

10/22 Decreased my Inderal to the 7.5. As usual my HR lying and even more so standing increased in 3-4 days ( ~ On 10/26- 10/27 yesterday ) I continued running. Last nights run my Heart Rate went 15 points above 100% of what my calculated maximum Heart Rate should be. This morning my HR numbers on my blood pressure cuff have improved from yesterday. I think that pushing the heart rate so high may mean the body tells the heart to reset or adjust to a more appropriate range, which then helps keep Lying and even more so Standing heart rate down. I am not saying this is good for everyone, I am just reporting what seems to be helping me. Only well wishes for all. Maximum Calculated HR is 220 - your age. People without POTS do not normally go over their maximum HR when exercising. That is why it is a maximum HR.

I have now gone from Inderal 80mg BID to starting 7.5mgBID this week. I can feel the increased HR and it makes me feel more easily stressed etc., as it does with each dose decrease. I am still hping to stay at this dose a bit and taper off. I will check my weekend HR Lying/Standing as I do every weekend in the morning to see where I am at. So far continueing the running.

Issie-I may want to see if the mito doc knows anything about it. The literature seems to show it can donate or accept an electron, as many of these mito compounds do. ( like Vitamin C ) but it is much more powerful. It is tough to understand a lot of Claire's article. I feel I am definately doing better, and my hunch is the mito RX is helping, if I was to put a bet on it I would go with the Ubiquinol and the Carnitine as that is what my original doc that discovered Seasonal Affective Disorder and Seasonal Energy He also treats patients with N-Acetyl. I started 7.5mg Propranolol bid this week

As an antidepressant, Wellbutrin is dopaminergic and is in a class of its own, it often has few side effects and or can even relieve side effects from other antidepressants, has your doc considered that?

Chaos- why hand tremors? Issie- How can it be too energizing? Wouldn't that be good? Corina- Thank you so much! It is all so unknown and trial and error, and we have to figure out what our illness is on our own. It has been so nice in many ways to have this site and the people on it.

http://www.google.com/patents?hl=en&lr=&vid=USPAT8097635&id=WSgBAgAAEBAJ&oi=fnd&dq=pyrroloquinoline+quinone&printsec=abstract#v=onepage&q=pyrroloquinoline%20quinone&f=false Not sure if the link above will go through but I found a patent for PQQ for decreasing insulin resistance. It seems to ahve a tremendoud ability to help with oxidation-reduction which means it can assist damage mitochondria, help protect damage to the brain from oxidative stress, and help with the generation of new mitochondria. I am interested in this thing.

Chaos- Regarding what you said about the doctor saying "I'll be on a low dose for life." I was doing terrible overall last spring when I saw the Cardiologist who specializes in Electrophysiology and POTS, and he said "this is just the progression of the illness." He gave me Mestinon at the time as the next thing to try I believe. ( It is Pyridostigmine right? ) I did not take it because I had to return to work within days or lose my job and had read on this forum that often people get GI side effects. I started this plan of exercise and slow Propranolol taper. I am not well, but am much better than in the spring. Symptoms are better, Lying and standing HR are almost as good as on Propranolol 80 BID, ( ~ 75 lying, ~ 95 standing average. I still meet criteria for POTS because individual numbers will vary ) Lastly I see myself as doing better because I am on so much less Propranolol - 10mg BID. I am continueing the mito cocktail (12 days) and as above would have to say that it may be helping reduce the feeling I call dizziness that comes with cognitive problems, like " brain fog." It is hard to say for sure, and is not 100% relief by any means. I

I am still on Propranolol LA 20 mg AM only, just recently reduced from 15 mg BID, so I expect my HR to go up some more, expecially standing. I am starting my Mito Cocktail though. ( Started 10/8/2012 ) Seems like I might be doing a little better. Maybe that is just hope.

Cymbalta along the lines of the comment on Effexor can be activating I understand. I did not follow if you are trying Namenda now. I will be interested in the result if you do. I do not know much about that.

If your doctor has OK'd it and you can do it, I recommend the exercise. I believe ( just my own thought) that the body is incredibly complex and if something is not working just running the engine may reset it. May be crazy but the doctors have not figured out the answer.

Firewatcher- the 30 seconds to 2 minutes with a max of 30 minutes helps in looking for TLE. Also making sure their is no real smell, for example a child that complained of the smell of burning rubber, was brought to the neuro and it turned out he had a better nose than his parents and was smelling burning rubber in the house! Other Temporal Lobe Epilepsy criteria can be helpful such as Deja Vu. The smell of burning rubber is pretty pathognomonic. ( Assuming their is no rubber burning and it is an olfactory hallucination.) MissTraci- yes, I was diagnosed with TLE based on these type of symptoms and to quantitative EEG's over 20 years ago, and put on an antiepileptic, along with Propranolol for the tremor caused by the antiepileptic, and a couple other meds like thyroid (hypothyroid), and Selegiline ( A dopamine indirect agonist ) I was then symptom free for 20 years and 3 years ago got this Vertigo. I am not sure if it is really TLE that is my Vertigo. After the first 2 years of Vertigo, I tapered my Propranol slowly ( 3-4 weeks) and had crazy HR's. Now I am trying a slow 6 month taper with regular exercise at a HR higher than my calculated maximum ( which is difficult to do, not difficult to get it that high)

I found this topic on searching for Vertigo. I notice that what I call "dizziness" is probably better called vertigo, though I am not sure on the definitions. What I feel is a lot like being to drunk, or I have described it as my brain feels like a rap record going briefly round and back repeatedly, and interfering with my thinking. When it is really bad I will fumble things, or bump into things. I do not really have lightheadness most of the time. ( I have had it but I believe related to my Diabetes or something specific. ) That is my limited understanding of the word dizziness- that it can be divided into lightheadedness or vertigo. It really seems like their are many types though. For example with my dizziness the room does not spin in circles like after you get off a high speed merry go round. Just rapid and brief round and back.

http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/epilepsy/types/temporal-lobe-epilepsy.html

The Beta blocker Inderal tends to block the HR at a higher rate more than at a lower rate. This is why it can be helpful in POTS as the problem for a POTS patient is that the HR increases to much (30 points) or is too high (120 and up) standing. Thus, if the medicine can lower the standing HR without lowering the resting as much one might feel better. This means you will have trouble getting your exercise HR to as high a level. I was on Inderal 60 mg BID and later 80mg BID for over 20 years for other reasons, and one theory I have for my POTS is that my body somehow learned to compensate for this blockade. What I mean is when I was doing strenuous exercise over the years, like a 10 mile hike or running, my body was signaling itself it needed more blood, but the B-blocker was slowing the heart rate. So the body learned to adapt. ( Bodies are good at that. ) Maybe by increasing receptors in number or increasing output from the adrenal gland I do not know. Increasing sensitivity of the receptors? Thus my idea is to taper my Propranolol very slowly while running. I measure a series of Lying and Standing HR's 3 times a week and if I go back into the POTS range ( 30 increase with stand or over 120 stand ) I stay at that dose without taper till normal. NMPotsie - obviously this plan cannot work if your resting standing HR is 130 on RX at current dose. I do not know what is going on with system either just trying to figure it out as well as I can, and see what works for me. It has not eliminated symptoms either.

I agree with the nonfunctioning medical system. My doctor from 20 years ago ( not POTS ) still answers his phone, tries to find the root of the problem, takes time etc. Now it is all about billing codes, no time to look into things, specialty doctors that only see their specialty or subspecialty even, in an isolated way from other aspects of medicine. The body is a whole, and you can not look at one part in isolation. The primary doctor is not really even willing to coordinate all of this, and thus if you have multiple concerns they are really often just unhappy with having you as a patient. Thus if you can find a good primary to help you are lucky. It is not about truly deciphering what is wrong with the patient and treating them, it is about biling and documenting to avoid legal concerns.

I have discussed this on other threads on Epilepsy. Olfactory hallucinations are commonly related to epilepsy. Usually they last 30 seconds to 2 minutes with a maximum of 30 minutes, however they can repeat. They are an ictal sign. A person can have Simple Complex Seizures ( Temporal Lobe Epilepsy or Temperal Lobe Dysfuction ) without EVER having a physical convulsion. The most common ictal olfactory hallucination is a burning smell, and a smell of burning rubber is the textbook pathognmonic sign for this. Other ictal phenomenon include Deja Vu, and similar such as Deja Vecu, Jamais Vu, taste hallucinations etc. This is not medical advice just straight from textbook. I was diagnosed with Temporal Lobe Epilepsy 20 years ago. POTS may be due to autonomic dysfunction from TLE, or TLE may be due to POTS when a person does not get enough blood to their brain and a seizure occurs. ( The last was from Dr. Lowe's video which was posted on this site ) An Epilepsy related to POTS may of course involve actual seizures as it has for some people. I am, of course, just trying to figure out my own complex illness, but I hope that this information is of some use in searching for answers, as I noted it is not meant as medical advice.

Just went from Inderal LA 15mg BID to 20 mg AM only!!! ( This is from last springs dose of 80 BID ) I continue to run multiple nights per week. Most runs my HR goes above my calculated maximum towards the end of the run, and I reach a point I cannot run any longer, but my Garmin watch shows sometimes I will continue 1/2 mile or more and reach a HR 10 points above my calculated maximum. My overall pace is not fast just HR later in the run. The Cardio had me do a stress test a while back where I got my HR to 30 points above max, so he said it is safe to push it.

Issie, I am still doing Carnitine as I had started it some time ago. The reason I do not want to add the recommended Mito cocktail despite medical advice to take it, is that tapering my Propranolol and running seems to be bringing my dose of Prorpanol lower and lower. If I am able to do this but take mito meds, I will really not know that it was not that the mito meds were treating it. I would rather see if I can get Propranolol to zero first without meeting POTS criteria at rest. Then if stil symptomatic consider other causes. Maybe it is crazy but I have been tapering this a long time now, and want to give it a finishing shot.

No she is not. I am wondering why her HR went up so much also. I had her do it to get more of an idea what normal is. I had my parents do it a while back but Dad hikes bikes and even still runs some. His came out with a very small difference. Mom however has chronic fatigue. Mom's almost, though not quite met criteria. But my friends meets criteria, though she is asymptomatic. Thus I just wondered well how many asymptomatic people meet criteria?

I had a friend try the poor mans tilt test and the difference Lying to Standing was 33 points. I am wondering what percent of the asymptomatic "normal" population meets criteria, or if not what would a normal Lying to Standing HR change be? Has anyone tested a family member etc., ( nonbiological relative like spouse ) or friend? Or do any of the medical experts on here know of a study where they looked at this. Sort of a tilt test on controls.

Issie, Having been diagnosed by a Mito genetics doc it seems crazy not to take the supplements, but actually no, I am tapering my Propranolol first and exercising. I would like to see if the criteria for POTS vital signs can go away without ANY Propranolol, yet I still have symptoms which will be suggestive of another cause. Thus I continue an incredibly slow taper while exercising. I am using clear gel capsules to split doses of the long acting Propranolol, otherwise I get to much fluctuation in my vitals. Either way ( if I can taper the Propranol completely or not ) I will likely try the supplements after that. The Mito genetics doc does not seem very interested as he gave me no instructions on/or relation to the DM, simple seizures, or POTS and just made a 6 month follow up.

I believe I am stating the obvious, and correct me if I am wrong, but it still seems it should be noted that in addition to either/and or both of: A rise of 30 points in HR from Lying to Standing Over 120 HR Standing one needs to have symptoms to be diagnosed with POTS. I realize that is obvious, as no one would be seeking help if they did not have symptoms.

How would one know if they are in the 33%?