POTLUCK

thanks

Ambien is generally effective with few side effects for the short run. It is not recommended for the longer term. I will post something here on this so this is not advice. I can post something on possible side effects like SeattleRain's but this has more dangerous potential as one could hurt themselves during sleep. These experiences are very rare.

http://www.livestrong.com/article/265434-long-term-side-effects-of-zolpidem/

Thank you everyone for the answers. It looks like I am not the only one who's heart rate goes over their calculated Max. I am not sure about parts of this thread as there are several edits.

Rama - You mentioned dangerously high ( no longer ), but the cardio told me he did not think it was dangerous for me to go so high. ( 30 points over my calculated Max ) That is not to sa what is dangerous or not, just what he told me.

Relax86, I noticed that effect also, ( My HR staying elevated a couple hours after - of course not as elevated as during the run, but above what it was before by quite a bit.) but it has improved with my running over the last year.

Lemons - One of the things that has been commented on here before but I still notice is how many people were athletes and more so endurance athletes before this illness. It seems disproportionate.

jkh9 - Yes I can hit 120 by standing on a bad day. ( not often anymore - but today I messed up by drinking heavily last night and found out that does not work with my POTS even when I am doing well. I am not only feeling terrible but my resting and standing HR and the overall difference are all elevated more than normal. )

Alex- I am still on 3.75mg Propranolol LA BID, which I make from 60mg capsules by splitting them 4 times into 16 capsules ( with store bought gel capsules. I went to 2.5 BID ( made from 80mg LA Propranolol ) for a while but do to stress in my life went back to 3.75 temporarily. I certainly do not feel stress causes my illness but I do feel it exacerbates it.

Hey racer,

I saw your post the other day about maximum HR, when exercising. Take a look at my post dated today with a poll on Maximum HR. I find my HR going 30 points over calculated maximum for my age to be strange!! The cardio gave me a VO2 test but was not there and they stopped it at my calculated max HR for safety purposes. ( Yet the Cardio who was not at test says I can run to a HR as high as I want. ) If I was to go at 90 % of max HR I would be so slow I would be bored even on a long run. ( would be more of a jog/walk at that HR )

I think you can look at the QTc ( i.e. QT corrected ) to compare apples to apples.

OK, I know I have posted on something similar several times but I am really wondering if this is common to people with POTS or just myself.

If you take 220 and subtract your age = Your maximum HR "I know calculated, estimate"

but how many people on here can exercise with their heart above this number ( whatever it is for you ) for long?

I have spent the last nearly year going from run/walk to run, and up to an 8 mile run - slow pace 12 min./mile( my longest ) on saturday. My HR goes over my Maximum in the first mile and stays there the entire next 7 miles. ( I have it on Garmin and tested at Cardiologists stress test. ) It reachs 30 points over my maximum calculated HR frequently, including on this run.

Is this normal for POTS people?

( The difference between my average Standing - Lying HR can be 15 points less the day following one of my longer or harder runs. ) I am doing much better. I still have symptoms daily, but can work again, and anyone that saw me on this forum a year ago must notice how many spelling/errors I made due to poor concentration/dizziness.

I do not know if this has to do with it but I have been diagnosed with Temporal Lobe Epilepsy ( Simple Partial Seizures ) I recieved this diagnosis long before POTS and am not sure which causes which or if the Mitochondrial diagnosis causes both ( Mito commonly causes epilepsy, and autonomic dysfunction. ) My TLE was Dx by EEG, POTS by tilt, and Mito by biopsy.

Anyways, smells lasting by definition from 30 seconds to 2 minutes with a maximum of 30 minutes are a sign of TLE. The most common smell is burning rubber and this is considered nearly pathognomonic if it fits the above parameters. More of a solid diagnosis on that sign alone than on EEG can be made. Also other senses such as taste and strange hard to describe senses are often found in patients with TLE ( but again 30 sec to 2 minutes common with a maximum of 30 minutes ) Metallic taste is the most common taste. Others such as Deja Vu, Deja vecu, Jamais Vu, and Jamais Vecu are sometimes present.

Rachel (Giraffe),

Are you on Domperidone? Or Don Perignon? Noticed on the bottom of your post and thought if it is the latter that is the RX I need?

I have recent onset adult diabetes and had GAD65 checked to help test for a more rare type of Diabetes called LADA ( or Latent Autoimmune Diabetes of Adulthood ) It is an autoimmune marker, I do not recall if more common in certain autoimmune thyroid conditions or stiff person syndrome. Having an elevated GAD65 would not in itself me you have diabetes, a high fasting sugar and follow up OGTT ( Oral Glucose Tolerance Test ) would be used for this. If you were diabetic, it would strongly point to the cause.

Glad to hear you are doing better Issie!

Ambien ( 5 mg ) does not cause me any problems but helps me sleep. I like the 6.25 mg long acting form better as it will keep me asleep longer. Benadryl keeps me asleep the longest ( 25 mg ), but that can be a bad thing if I do not want to sleep in in the morning as it leave me groggy in the morning.

Melatonin works better as a sleep cycle regulater ( which is what it is naturally ) than a soporific. If you take it at the same time it will help set your sleep cycle. You only need a low dose as the body only uses a low dose naturally. (i.e. you can use half or less of the 3mg pill you buy over the counter) After 3 days it should be helping set your cycle of sleep.

http://www.dailymail.co.uk/health/article-2010276/Beetroot-juice-athletes-game-boosting-stamina.html

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1027050/pdf/gut00035-0067.pdf

http://sweatscience.com/beet-juice-its-the-nitrates-stupid/

http://hyper.ahajournals.org/content/56/2/274.abstract

The silverbeet would be due to high nitrate content?

On the question of trigger, does sitting up, or standing vs lying down make a difference?

I do not have these and am sorry to hear others do.

I am thinking of running in one. I do not know about planning one, sorry. Running drastically lowers the difference between my standing and lying HR as evidenced by the ability to taper my Propranolol from 80 LA twice a day to 2.5 twice a day. ( Started yesterday. ) By the way that is 4-5 of those little round white dots from the big capsule that I have to transfer to smaller gel caps.

Sometimes I wonder if it is just the taper and the running does not have to do with it, but when I miss the running, like missing 2 weeks while sick with cold/flu this winter, my HR difference lying to standing immediately started to creep back up, requiring more B-blocker. I also notice that when my HR goes very high running it seems to help the most.

Not to confuse things more but....

In addition to, and seperate from what Rama is stating, there is the question could the SNRI cause an artifactual increase in your measured Norepinephrine, that is not real? I believe that would depend on the type of lab test used to look for NE. I had to look into this in great detail with my labs and had to have my doctor phone the lab etc. when my NE came out over 8000 at Quest.

What about plasma metanephrines and normetanephrines?

After my NE was over 8000 they did scans on me, and what I learned is the scans are not that specific either. My MIBG scan was positive and read by one excellent radiologist as correlating with a spot on CT scan. In the end we did plasma metanephrines and normetanephrines. They are easy, not to expensive blood test.

My BP runs over 150/90 and if anything goes up a bit when I go to a standing position. Does that by definition mean I have Hyper POTS?

Yes, to my understanding.

The article by joyagh was Vit C in low flow pots with vasoconstriction, not vasodilation. And the vitamin C improved vasodilation, benefiting these people.

I have a mitochondrial diagnosis: Electron Transpost Chain Complex 3 deficiency, by skin ( fibroblast ) biopsy and culture. I recall sending some PM's back and forth asking you and others on Dinet with mito mentioned in their threads, about this testing.

Many disorders are more common in patients with mitochondrial dysfunction which are on the mito action and other web sites along with percentages etc. These disorders are usually of cell types that turn over quickly or are high energy utilizing such as nervous system and hence dysautonomias and seizure activity. Diabetes and other endocrine disorders are another. And of course as you mentioned high end hearing loss. Visual problems etc. Having one, or even multiple disorders in these categories does not of course mean you have a mito disorder.

Initially I had a few lab abnormalities such as a fluctuating but generally mildly elevated CPK and ammonia. The CPK was discovered in the ER my very first day of POTS symptoms, and written off as due to a long hike I had just done the day prior. Later I was referred to mitochondrial geneticist who ran many of the tests on your list Rachel. Acylcarnitines plasma and urine, ammonia, lactate, pyruvate, Urine organic acids, etc.

These tests can be normal or abnormal depending on the day- seriously, not joking they are more likely to be bad if your day is bad, if your symptoms are bad, so the doctor told me on my worse day when I do not want to get out of bed that is the day he wanted me to get to the lab however I did it. ( gee fun )

Many of these tests came out abnormal, most importantly a variety of short and long chain acylcarnitines- short only on initial test, then long chain later. I have also had most of the tests like CBC, Vit D panel etc. listed there. The top test my mitochondrial genome was also done, this was an expensive test done after abnormalities in the others.

Anyways, based on these lab abnormalities the mito doc did the biopsy last spring, results take months to come back and told me of this ETC complex 3 deficiency. He is certain I have it, but is very vague on what it means to me, if it is definitively the cause of my POTS, will it progress ( which is very scary to me) and is it the cause of other things I have such as Diabetes, Hypothyroid, Partial Complex Seizure disorder.

He prescribed a cocktail of medication for me including Carnitine, CoQ10, Vit C 2000mg BID, Vit B1 and B2. I cannot tell you if it is helping much. It is expensive because it is over the counter except Carnitine. Running is helping and it was helping long before I started the cocktail.

I did not go to Mayo for my Mito DX, and will not comment on my Mayo Rochester Neurology experience here.

I hope any of that helps yourself, or anyone else with a mito disorder in the future. I know I was scanning all related words on Dinet and looking up all the info I could in looking for help at the time. Now that I have the diagnosis I find very very little information on my specific illness.

The third complex of the electron transport chain is incredibly complex and difficult to understand for me.

Feel free to PM if anything I can help on otherwise. This doctor said muscle biopsy would have been more likely to pick it up than skin but he only offerred me skin. There are so few mito doctors that I already know Dr. Cohens name when you mention it, as he was one of the ones I checked into, just further away. Makes POTS doctors look common.

tinea versicolor is another possibility, and less likely Pityriasis alba Ask the doctor.

Hi jkoconne

Any changes, such as medication, that might match with changes in GI symptoms?

Chaos-thanks. I went for my VO2 max test today. It was ordered by the cardiologist who treats my POTS and done by his section of the hospital. He has cleared me to exercise at a HR that is 25 points over my calculated max with a stress echo. Yet they did not want me to run faster than my calculated max HR because they said what if something happened, we would have to get the cardiologist right away. I said what if something happened when I am running on a trail at home far from the hospital by myself. Thats OK? They assured me that was OK. Hello?? Anyways my VO2 was at 109% when my HR was just over 100%. So much for the deconditioning theory. I think the test was a waste of time. Will read your links soon.

http://lpi.oregonstate.edu/infocenter/vitamins/vitaminC/

This might answer some of the above. Also found it interesting they said: " Vitamin C also plays an important role in the synthesis of the neurotransmitter, norepinephrine. "

Puppylove,

You really stay amazingly strong about all these things! I am glad the ER people actually did something, rather than treating you like you were nuts, sorry you had such a bad reaction. Hope it helps via Children's Hospital.

10,000 mg is a lot. I always like the Linus Pauling Institute recommendations on vitamins and supplements for comprehensive information in all areas. ( not specific to POTS though. )