Chaos Posted October 21, 2012 Report Share Posted October 21, 2012 That's the same dose of propanalol I'm on...10mg BID. Can get down to 5 TID for awhile but then the PVCs, hand tremors, and palpitations are too disturbing and end up going back up. According to my POTS neuro, we only need a "whiff" of beta blockers. Maybe that's the theory that docs should adopt with most of us regarding every medication they try with us....start with a "whiff" and then see what happens before they blow us away with a normal dose. Quote Link to comment Share on other sites More sharing options...
issie Posted October 22, 2012 Report Share Posted October 22, 2012 POTLUCK,I posted about PQQ awhile back and have tried it. It is very stimulating and it gives a good bit of energy. I did some research on it and body builders are using it - but, they are also finding that the amount it comes in is too strong. Most were taking 1/2 pill and skipping days in between dosage. You can probably do a search and pull up some articles I posted on it. I've been wanting to try it again - but, just haven't. I still have it and will when I sort out some other things I have going on. Life Extension has a good bit of info on it.Glad the mito cocktail is working for you. I thought it probably would - since that was positive testing for you.Issie Quote Link to comment Share on other sites More sharing options...
corina Posted October 22, 2012 Report Share Posted October 22, 2012 I'm keeping my fingers crossed for you Potluck! Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted October 23, 2012 Author Report Share Posted October 23, 2012 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. Quote Link to comment Share on other sites More sharing options...
issie Posted October 23, 2012 Report Share Posted October 23, 2012 Not necessarily - as it can increase the sympathetic system and ramp it up. It can give a surge feeling - rather then an "I have more energy" feel. You know that nervey - hyped feeling! Just go slow and low. I put about 1/3 into caps and divided it out and it was still too much. I talked the Life Extension doc about it and he said it had hyped him up too and he doesn't have POTS. So, for sure take it slow. Depending on how much damage there is to your mito - I guess will determine your reaction. Keep us posted. I will try it again - in the future.It's nice to have others who understand and can relate. We all need that support - whether we want to admit it or not. Issie Quote Link to comment Share on other sites More sharing options...
Chaos Posted October 24, 2012 Report Share Posted October 24, 2012 Potluck- Not sure why exactly the tremors. Have had what I assume is a benign essential tremor since I was a teenager. When I had my first POTS symptoms they were tachycardia and really severe hand tremors. My POTS neuro attributes it to the hyperadrenergic component that he thinks I have, in addition to the primary neuropathic POTS he diagnosed. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted October 25, 2012 Author Report Share Posted October 25, 2012 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 Quote Link to comment Share on other sites More sharing options...
issie Posted October 25, 2012 Report Share Posted October 25, 2012 Yeah, would be worth a shot for sure --just go low and slow.You lost me on the article from Claire ----I'm having brain fog tonight. And he uses n-acetyl (what) carnitine, cysteine or carnosine. There are actually three types of carnitine. Which type are you using?WOW - much improvement. Glad you decided to try the mito cocktail -seems to be agreeing with you. (Push, push, shove, shove . . . .took you awhile. ) Glad it's working!Issie Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted October 27, 2012 Author Report Share Posted October 27, 2012 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. Quote Link to comment Share on other sites More sharing options...
issie Posted October 28, 2012 Report Share Posted October 28, 2012 No problems . . .just wanted it to be more clear in case someone else wants to try your protocol -----LIKE ME!!! Issie Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted October 28, 2012 Author Report Share Posted October 28, 2012 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/S0006291X12020098Also 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. Quote Link to comment Share on other sites More sharing options...
issie Posted October 29, 2012 Report Share Posted October 29, 2012 Interesting article. But, I do think you are being wise to do one thing at a time. I know the PQQ was very stimulating for me - but, it gave me tons of energy. I haven't tried it again - as want to figure out this MCAS protocol first. I know when I do try it again - it will be only 1/3 of a cap ---as more then that sends me into overdrive. Let us know if/when you try it and what your response is.Issie Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted November 18, 2012 Author Report Share Posted November 18, 2012 Continueing on Pramipexole 0.25, now increasing to 0.375. Mito Cocktail Ubiquinol, vitamin C, B1, B2, Carnitine and exercise.Now decreasing Propranolol from 5mg BID to 5mg AM only ( and 6 months ago I was on 80mg BID ) Symptoms doing well, not gone. Quote Link to comment Share on other sites More sharing options...
Chaos Posted November 18, 2012 Report Share Posted November 18, 2012 Super exciting to hear your progress. Thanks for the update. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted November 20, 2012 Report Share Posted November 20, 2012 Less is always better in the meds department, but sometimes you need them Supplements help too! Glad to see you are doing better Potluck...Happy Thanksgiving!! Quote Link to comment Share on other sites More sharing options...
Mytwogirlsrox Posted November 21, 2012 Report Share Posted November 21, 2012 Great job! Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted December 10, 2012 Author Report Share Posted December 10, 2012 I had to increase the Propranolol again when I went down from 5 BID to 5 AM only, so I went back to 5 BID, then down to 3.75 BID, now 3.75 AM only.Meanwhile I increased Pramipexole to .5mg at night for Restless Leg Syndrome which emerged as I am tapering Propranolol. Also think Dopamine agonists may have to do with this illness.Continue on Mito supplements: Ubiquinol form of CoQ10 200mg BID, Carnitor 1 tablespoon BID= 3 g/day, Vitamin C 1000mg BID, Vitamin B1, and vitamin B2Doing pretty well. I still have symptoms, but far better, and functional for work. Quote Link to comment Share on other sites More sharing options...
corina Posted December 10, 2012 Report Share Posted December 10, 2012 Thanks for updating POTluck! it's great to learn how you're working on it and how you improve. Very inspiring to others! Quote Link to comment Share on other sites More sharing options...
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