POTLUCK

Carnitine (Carnitor 3gm in 30 ml solution), Coenzyme Q10 ( only the Ubiquinol form ) 200mg BID, B1, B2, Vitamin C- high dose- he said 4000mg a day but could not get a straight e-mail reply on literature that says this is too high so I take 1000mg BID. I take all of it per doctor who diagnosed me with mitochondrial disorder and not sure it does anything, but doctor who diagnosed me with simple partial seizures also recommended supplemental Ubiquinol and Carntine. Also took N-Acetyl Cysteine which seemed to help a little in past, and may go back to. Mostly exercise helps.

An Organic cause of symptoms should always be ruled out first, before concluding it is psychiatric, even if the symptoms were only "psychiatric" such as the normal signs of depression being caused by hypothyroidism for example.

Critical Depression is not in the DSM-IV. Depression itself is not an illness one should overlook. Signs of depression include changes in sleep, interest, guilt or hopelesness, energy, concentration, appetite. Also a sign ( something observered, not reported by the patient ) is psychomotor agitation or retardation and lastly suicidality. Look for 5/9 with a depressed-sad, blue, or unhappy mood most of the day more days than not for 2 weeks minimum. Obviously suicidality is the most serious symptom, and one should see a psychiatrist for depression of suicidality.

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 B2 Doing pretty well. I still have symptoms, but far better, and functional for work.

Update- Have a cold this week, but have continued my taper last week. As I mentioned earlier in this thread I was on Propranolol LA 80mg BID last spring. I have tapered down to 3.75mg of the long acting form in the morning only now. ( Made with gel capsules carefully splitting the larger size capsules ) My numbers the past few days Lying run 76 HR and standing vary alot but average about 98 standing HR. I was running quite a bit last week at a jogging pace ( 12 min./mile ) but my HR still rises over time to about 20 points or more above what my calculated MAXIMUM HR for my age is. It is still improving. Symtoms are better. I am taking mitochondrial supplemtnts recommended for the diagnosis I recieved of an electron transport chain complex 3 disorder also. It sounds crazy but when I have tapered to fast my lying to standing HR becomes to high. Thus tapering B-blocker while exercising has been working for me. Exercise without the B-blocker would not have been possible, as I was simply in too bad of shape.

Congratulations!

Yes, Cognitive tasks, especially math are much more difficult when I am doing worse. I am currently doing better. Now I could add a list of numbers, such as reciepts, with the calculater easily yet even this was difficult when I was doing poorly, as I would lose track of which number I was on.

Yes, not mouth

Flourescent lights definately bother me. It is difficult to tell how much because standing is worse than sitting and I am usually standing in department stores etc. that have flourescent lights. I leave them off in my kitchen, the only place they are installed and fell worse when they are on. I believe this is due to Temporal Lobe Epilepsy of Complex Partial Seizures which my EEG diagnoses. I also believe my mito supplements help with this and Dopamine agonists as they decrease reactive oxygen species caused from mito dysfunction. I do have an Electron Transport Chain Complex 3 deficiency diagnosed.

You need to look at the corrected QT. Also how high is it. I have not, so far seen anything saying POTS can prolong it. Many meds prolong it in some people from my limited knowledge.

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.

I always get this when my symptoms are worse! It is also worse with worse symptoms. And it is lower eyelid, not upper. My symptoms are worse with lack of sleep as someone mentioned above affecting the eyelid thing. This seems very interesting to me. I also started gettng a lot of eye styes, which I thought might be some allergy ( though I do not get allergies much ) or maybe caused by the twitching. All I know is I did not have them before. They do not hurt anything.

My opinion is that many doctors will refer to a psychiatrist to rule out a psychiatric cause for symptoms. A medical cause should be ruled out prior to a psychiatric cause. Often, on referral of a patient a psychiatrist will assume their must be something psychiatriac there in my opinion. The symptoms listed above are seen in bipolar manic/hypomanic. A diagnosis requires distractability, increase in goal directed activity, grandiosity, flight of ideas, increase in activities that are pleasurable but with painful consequences, pressured speech, and decreased need for sleep or 5/9, incl. an elevated, expansive, or irritable mood according to the DSM-iv psychiatry manual. I cannot say if you do or do not have this.

It is my understanding that someone can have POTS caused by a pheo. But again pheo's are (quite literally) about 1 in a million. I do not know that they are clear on any one cause for POTS. I suggest that someone with hyperadrenergic POTS, which has higher blood pressures, might, in my own opinion, want to be tested for a Pheo because the high blood pressure with the signs and symptoms of POTS makes their likelyhood of a Pheo higher than 1 in a million by my understanding. My understanding is the lab tests are done to screen, and are suggested by the literature prior to the scans, as they are easier, less invasive, and less costly.

I was looking into research on Nitric Oxide when I came on this site, and it is very complex. As it is not understood I guess my personal philosophy is if it works great. Issie pointed out a few of the things regarding it above. Beet root juice was effective rapidly for me in feeling better but left me feeling worse later. Consistent with a hyperadrenergic ( or constricted vessals) presentation improving with something that expands the vessal, but only briefly with a rebound. Thus I have 2 left over bottles. I know there are 3 different types of nitric oxide and that it is what expands the blood vessals. Hence inflamatory nitric oxide is used in the bodies response to a believed invader to expand the vessals. When does this product come out?

Shan- I think it fits with the theory well. I do not think their is any clearly convincing evidence of how fast you need to get the HR going or for how long, and not even that my theory is more than that, a theory. Some people on here seem to have a problem getting progressively worse with exercise, but if you are doing it and your cardio fitness is going up thats great. Mytwogirlsrox- well, I do not know about "cured"- I hope for you, but you are having few symptoms and your numbers are normal?

I eat low carb for my diabetes. Basicaly Jenny Ruhl "Diabetes 101" diet to keep the BS below 100 fast, 140 1 hour after meals, 120 2 hours after meal. I am not sure that it helps or makes my POTS worse, sometimes I think some insulin might help get the sugars into the cell and this might help the POTS. ( but I have been told by biopsy of fibroblasts that I have a mito disorder: ETC complex 3 so I may be very different.) Regarding almond flour, it is lower in carbs also, and thus many recipes call for it. There are many recipes on Jennys web site. I eat a lot of beef but I like the low carb pizza for example.

Pheochromocytomas can result in numerous presentations, almost all of which involve high blood pressure rather than low. ( If very small it might not.) A POTS like presentation is quite possible. ( Meaning one might have a positive tilt test and POTS symptoms ) Pheo's are very rare ( like 1 in a million ) I still recommend anyone with Hyper POTS be tested, as who knows? The better tests are 24 hour urine or plasma metanephrines. Norepinephrine and epinephrine that are often tested for POTS itself can show it. Mine were sky high, far beyond the normal limit. (over 10 times) I contacted a world POTS expert who e-mailed a world Pheo expert who said this could not be due to effects of any medication I was on. He said " if accurate, this must be a Pheo." My endocrine doc, had already ordered scans and a Pheo expert consult. The pheo expert said there was a 99% chance I had it. The radiologist read my MIBG as positive. The Pheo specialist at this major center said it did not match the adrenal location of the CT and I did not have a pheo, then at my appt. said there was a 50% chance I did. He recommended pelvis and head scans. I said why not repeat the labs. He did, then said I did not need the other scans. I went to another Pheo specialist, a surgeon who said he was also a medical expert on pheos, he said he wanted to do a PET, until hearing the other specialist did not feel I had it and then felt it was not indicated. Lastly my primary felt the scans should be sent to another radiologist. That radiologist said the location of enhancement on the MIBG correlated "exactly" with a very small area on the CT of enlargment. That was all in the spring and it was a nightmare as I was suffering extreme symptoms. I have not seen more pheo doctors since then. I will probably do a follow up lab later and if my symptoms become more severe particularly high blood pressure, that will be an indication for sooner rather than later. My reading shows about a third of pheos are missed and a third are surgically aproached when nothing is there. Based on my above experience I would say labs first, and a second opinion.

I talked with the cardio the whole time. Only time I can actually talk to a doctor for that long a period. I tried to keep the conversation nonstressful and I am sure he did also as I felt stress might cause a HR change in me, but my numbers were so crazy anyway it would not have changed the result if I did meditation or thought someoneone was planning to kill me.

mytwogirlsrox-from your other post it looks like the exercise cured you?

Curious about the running- Does your HR go above calculated max ( 220-your age ) ? Regarding barometer it does not have any effect on me, but I understand that is common in POTS.

Sorry, only one, Thiamine.

By the way, very rare and treatable so do not want to be scaring anyone.

Just making sure, not Kaiser Fleisher rings of Wilson's disease http://www.nejm.org/doi/full/10.1056/NEJMicm1101534

Mytwogirlsrox- Off Beta blocker last winter/spring my tilt test showed about 97 Lying and Standing HR went up to 156 and down to 80 and bounced alot. My home test numbers for weeks prior to test were similar so that is what I expected on test but wanted test for proof.. Then cardio tried some beta blockers that did not work well. That was a nightmare period with drastic swings, cognitive problems, toes suddenly turn blue as if they will fall off, faint, lightheaded, blood pressure and HR all over. By May tapered up to Prorpanolol LA 80 BID. Since then I have maintained a (Standing -Lying HR difference less than 30) and a Standing HR less than 120 on RX while slowly tapering. I go down by 10-20mg ( or less as getting to lowest doses) and check HR for a week or two. One time when I decreased from 15 BID to 10BID my HR went back above my criteria so I went back to 15BID. Then in a couple weeks I tapered again. An incredibly slow taper with exercise. If I was not on meds I do not know if I could function for the exercise and I definately could not work, so it has allowed me to continue functioning while exercising and tapering. My HR last nights run was an average of 3 points lower than my calculated max. ( Wow that is high!) And my final HR was 17 points higher than my calculated max, so clearly my body is not normal! But it helped lower todays HR even from yesterday. I took multiple readings with cuff this morning and Lying HR ranged 74-79 with standing HR range 89-98. I never count the first HR on standing as it will do odd things. Probably more info. than you needed ( or wanted ) but I am taking this thing very seriously!