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UAB autonomic testing results.


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I went to UAB autonomic testing lab and I'm seeing a cardiologist in Jacksonville soon whom has good reviews. 

So with the TTT, by 5 minutes my heart rate increased by 64 bmp and my blood pressure dropped substantially but blood pressure recovered after going supine. During the Valsava maneuver there was a drop in blood pressure for which the doctor suggests "adrenergic vasomotor impairment". I'm not sure what that means. "Orthostatic intolerance with marked excessive tachycardia during tilt." Findings consistent with POTS and "restricted adrenergic neuropathies in lower limbs." All of the non pharmaceutical recommendations I already do on a daily basis with little help and the medications recommended were: florinef and midrodine but florinef gave me a very bad neurological and physiological reaction probably because I have major endocrine issues being discovered presently and my old cardiologist wouldn't prescribe midrodine because it causes urinary retention and I have severe Interstitial cystitis and bladder outlet obstruction, though I'd be willing to give it a try. Hopefully the new doctor has more suggestions. 

If anyone can explain some of the lesser known ("adrenergic vasomotor impairment") findings that would be great and what medications have helped for you with similar findings? The only medication I really stopped within 48 hours was my beta blocker; I was instructed to stop anti depressants but that would be three medications and I tried to stop 2 and started going through withdrawal. I am pretty much bed bound and cannot sit or stand for very long without fainting and I have dystonic/autonomic seizures. I am also very sensitive to medications and have failed trials to: proponalol, Northera, florinef, desmopressin, stimulants, clonidine, guanfacine, etc. Saline iv's and ivig have been very helpful in the past but I only got ivig for 6 months and I rarely get saline infusions. 

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Midodrine was a great drug for me for a few months, I was able to do a lot more and felt much better on it - it was easily the best med I've tried for POTS. Sadly after about 4 months I started having very bad hypertension after about 4 hours of taking a dose - my cardiologist thought it was a kind of rebound as the drug wore off as if I took another dose the hypertension didn't happen (you can't take it if you are going to be lying down so you can't take a dose after late afternoon).   My diastolic was consistently getting over 120 (oddly my systolic wasn't so bad, it rarely got much beyond 170) and would stay there for a couple of hours before going back to my usual 100/60!  I was very symptomatic with crippling headaches and chest pain when my BP was that high so I was told to stop it. 

I also have some bladder issues (urinary retention and overactive bladder) although nothing like as severe as yours but honestly I don't remember Midodrine having much effect on them - I certainly didn't notice any difference in terms of urinary retention.  The only side effect I really remember was a tingling scalp - it wasn't unpleasant, it just meant I knew when the drug was working! 

I noticed you said your cardiologist wasn't keen on Midodrine - what did your urologist think?  I know my cardiologist won't prescribe me neurological drugs because he says he doesn't understand how they work and he would rather be safe than sorry (personally I'd rather he let me decide if I wanted to take the risk or not).

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7 hours ago, cmep37 said:

Midodrine was a great drug for me for a few months, I was able to do a lot more and felt much better on it - it was easily the best med I've tried for POTS. Sadly after about 4 months I started having very bad hypertension after about 4 hours of taking a dose - my cardiologist thought it was a kind of rebound as the drug wore off as if I took another dose the hypertension didn't happen (you can't take it if you are going to be lying down so you can't take a dose after late afternoon).   My diastolic was consistently getting over 120 (oddly my systolic wasn't so bad, it rarely got much beyond 170) and would stay there for a couple of hours before going back to my usual 100/60!  I was very symptomatic with crippling headaches and chest pain when my BP was that high so I was told to stop it. 

I also have some bladder issues (urinary retention and overactive bladder) although nothing like as severe as yours but honestly I don't remember Midodrine having much effect on them - I certainly didn't notice any difference in terms of urinary retention.  The only side effect I really remember was a tingling scalp - it wasn't unpleasant, it just meant I knew when the drug was working! 

I noticed you said your cardiologist wasn't keen on Midodrine - what did your urologist think?  I know my cardiologist won't prescribe me neurological drugs because he says he doesn't understand how they work and he would rather be safe than sorry (personally I'd rather he let me decide if I wanted to take the risk or not).

Thank you for responding. My appointment with the new cardiologist was today and I didn't realize it till my mom told me! But it went quite well as I've just moved and the old one had no idea about anything dysautonomia. Well she just plain wouldn't let me try it and she pushed gatorade and compression stockings a lot and I had to keep reminding her I can't drink gatorade because it's so bad for IC...... However, the new cardiologist today is going to start by taking me off of Bystolic because he said it's a horrible medication for lowering my HR because it's lowering my blood pressure and he was confused why I was on it to begin with! But we're going to do a halter monitor once the Bystolic is out of my system and he says there are much better things for reducing heart rate. In the office just sitting up for 5 minutes today my blood pressure was 106/66..... Not good so that's how he'll start. He also wants to try midrodine next and didn't seemed concerned with the bladder stuff as he hadn't seen it as much of a problem as you mentioned so it's worth a try. He also referred me to neurology after hearing about the seizures because he doesn't think they're dystonic seizures. So overall very good appointment with a cardiologist who finally understands all the medications!!! He also said "we'll try one thing at a time because if I put you on 10 things right now you'll feel like crap." He's all for me getting my saline infusions at a local place but he wants me to increase salt intake somehow so I still need to find something online or a recipe that is IC friendly. 

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8 hours ago, cmep37 said:

Midodrine was a great drug for me for a few months, I was able to do a lot more and felt much better on it - it was easily the best med I've tried for POTS. Sadly after about 4 months I started having very bad hypertension after about 4 hours of taking a dose - my cardiologist thought it was a kind of rebound as the drug wore off as if I took another dose the hypertension didn't happen

Midodrine is a tricky drug and I'm not sure anyone fully understands it. My experience was similar to yours except that I was able to take a second dose (I took one in the morning and one about 2 pm) and it only prolonged the hypertension. I did well on it for only 2 weeks, then I took my morning dose, felt a bit weird (didn't realize it was hypertension) so I took the next dose and spent the next 4 hours or so with the phone in my hand debating as to whether to call 911. Of course, many do very well on it without these side-effects. My cardiologist tried me on it again about a year ago but there was no dose low enough not to give me hypertension. 

On the other hand, testing showed that I had an overly eager parasympathetic system (not the usual over active sympathetic system) and I benefitted enormously from Strattera which increased norepinephrine in the synapses.

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1 hour ago, Sushi said:

Midodrine is a tricky drug and I'm not sure anyone fully understands it. My experience was similar to yours except that I was able to take a second dose (I took one in the morning and one about 2 pm) and it only prolonged the hypertension. I did well on it for only 2 weeks, then I took my morning dose, felt a bit weird (didn't realize it was hypertension) so I took the next dose and spent the next 4 hours or so with the phone in my hand debating as to whether to call 911. Of course, many do very well on it without these side-effects. My cardiologist tried me on it again about a year ago but there was no dose low enough not to give me hypertension. 

On the other hand, testing showed that I had an overly eager parasympathetic system (not the usual over active sympathetic system) and I benefitted enormously from Strattera which increased norepinephrine in the synapses.

Do you have low blood pressure? Mine runs extremely low all the time. I guess that's why my new doctor wants to give midrodine a try. I can't tolerate stimulants at all and Northera made me quite ill. 

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Almost all vasomotor nerves (those causing or relating to the constriction or dilatation of blood vessels) are adrenergic. Two types of adrenergic receptors (adrenoceptors), alpha and beta, are found in the vasculature. The sympathetic nervous system provides extensive innervation throughout the heart, producing effects opposite those of the parasympathetic system. The beta-adrenoceptors are activated by the catecholamines/neurotransmitter norepinephrine and epinephrine. These beta-adrenoceptors stimulate the rate and force of cardiac contractions. The alpha-adrenoceptors predominate in the innervation of the vascular smooth muscle and also in the lower urinary tract. In both cases, the sympathetic nervous system's adrenergic neurotransmitter, norepinephrine, produces its physiologic effects by binding to these adrenoceptors.

Adrenoceptors actively participate in the regulation of the vascular tone, either directly or indirectly (through the release of nitric oxide). A number of sympathetic abnormalities, most notably an increased adrenergic nervous system activity, have been identified as potential causes of high blood pressure. Causes for low blood pressure and orthostatic hypotension have numerous causes. I am so glad you have a sharp cardiologist willing to help you get to the bottom of your issues in a safe and sane manner. 

This article might help you understand this very complicated area of health:  
Mechanisms of sympathetic regulation in orthostatic intolerance, Julian M. Stewart, J Appl Physiol (1985), Vol. 13(10), pp. 1659–1668; 2012
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3524660/ 

As to adding more salt to your diet, I find it’s easy. 
For autonomic dysfunction it is often suggested to increase sodium intake in your diet to 3-5 grams/day. If no improvement is noticed and blood pressure remains stable, it is often recommended that the patient increase sodium intake to 5-7 grams/day. This will help the body retain fluid in the blood vessels to compensate for low blood pressure or excessive pooling of blood in veins. Please note that 1 teaspoon of salt equals about 5 grams. 
I can quickly get 2.5 grams salt (non-iodized – less fizzy nerve feelings) in my morning smoothie (a mix of 2% milk, blueberry juice, and a hemp milk drink) by adding ½ teaspoon salt which adds to my taste pleasure. I use drinks and mixes I like that taste good with salt. I also salt the heck out of food. In the evenings I may have another smoothie. I also eat potato chips (my favorite classic thin chips have 170 g sodium/350 g potassium per 15 tasty chips), pretzels, other fun foods most heart-healthy people avoid like the plague (search “high sodium foods” such as http://know-facts.com/top-sodium-rich-foods.html) bearing in mind what effect they might have on my IC. Sometimes I crave salt and will just shake some into my mouth for a hit.  

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I was given midodrine early in my diagnosis but never took it because I have labile bp.  I was worried it would make my spikes worse so my doctor eventually told me not to take it.  Instead I take short acting propranolol 2x a day (it works better for me than the extended) and Gatorade but have since switched to coconut water based drinks so there's less sugar.  I also started salting my food and eating salty snacks and the occasional salt straight from the shaker like @Rexie.   Even though I do this I don't seem to retain much sodium according to my bloodwork.   I'm just barely in the normal range but if I don't do it I don't feel as good.

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On 9/2/2021 at 4:01 PM, CallieAndToby22 said:

Do you have low blood pressure? Mine runs extremely low all the time. I guess that's why my new doctor wants to give midrodine a try. I can't tolerate stimulants at all and Northera made me quite ill. 

Yes, I have low BP but not extremely low—about 105-110 over 65.

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On 9/3/2021 at 11:22 AM, Rexie said:

Almost all vasomotor nerves (those causing or relating to the constriction or dilatation of blood vessels) are adrenergic. Two types of adrenergic receptors (adrenoceptors), alpha and beta, are found in the vasculature. The sympathetic nervous system provides extensive innervation throughout the heart, producing effects opposite those of the parasympathetic system. The beta-adrenoceptors are activated by the catecholamines/neurotransmitter norepinephrine and epinephrine. These beta-adrenoceptors stimulate the rate and force of cardiac contractions. The alpha-adrenoceptors predominate in the innervation of the vascular smooth muscle and also in the lower urinary tract. In both cases, the sympathetic nervous system's adrenergic neurotransmitter, norepinephrine, produces its physiologic effects by binding to these adrenoceptors.

Adrenoceptors actively participate in the regulation of the vascular tone, either directly or indirectly (through the release of nitric oxide). A number of sympathetic abnormalities, most notably an increased adrenergic nervous system activity, have been identified as potential causes of high blood pressure. Causes for low blood pressure and orthostatic hypotension have numerous causes. I am so glad you have a sharp cardiologist willing to help you get to the bottom of your issues in a safe and sane manner. 

This article might help you understand this very complicated area of health:  
Mechanisms of sympathetic regulation in orthostatic intolerance, Julian M. Stewart, J Appl Physiol (1985), Vol. 13(10), pp. 1659–1668; 2012
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3524660/ 

As to adding more salt to your diet, I find it’s easy. 
For autonomic dysfunction it is often suggested to increase sodium intake in your diet to 3-5 grams/day. If no improvement is noticed and blood pressure remains stable, it is often recommended that the patient increase sodium intake to 5-7 grams/day. This will help the body retain fluid in the blood vessels to compensate for low blood pressure or excessive pooling of blood in veins. Please note that 1 teaspoon of salt equals about 5 grams. 
I can quickly get 2.5 grams salt (non-iodized – less fizzy nerve feelings) in my morning smoothie (a mix of 2% milk, blueberry juice, and a hemp milk drink) by adding ½ teaspoon salt which adds to my taste pleasure. I use drinks and mixes I like that taste good with salt. I also salt the heck out of food. In the evenings I may have another smoothie. I also eat potato chips (my favorite classic thin chips have 170 g sodium/350 g potassium per 15 tasty chips), pretzels, other fun foods most heart-healthy people avoid like the plague (search “high sodium foods” such as http://know-facts.com/top-sodium-rich-foods.html) bearing in mind what effect they might have on my IC. Sometimes I crave salt and will just shake some into my mouth for a hit.  

Thank you so much for the response! What I find very odd is that I did the 24 hour urine catecholamine testing and my epinephrine was so low it couldn't even be reported on the range and the norepinephrine was at the lowest number possible to still be "normal". I am with endocrinology because my testosterone fluctuates and sometimes it's extremely high and other times my DHEA is high and my bioavailable testosterone is high as well. Endocrinology has no clue about the catecholamines and say it's not an issue but when I google and read other reports and articles from other major medical centers it is definitely something to be worried about and symptoms they list are often: lethargy, trouble sleeping, extreme exercise intolerance, drop in blood pressure. I am often too fatigued to even leave my bed but at the same time it feels like I'm in flight or fight most of the time. I'm having a lot of difficulty with my bladder because it always hurts and I use the bathroom and I don't feel empty. They have ruled out adrenal insufficiency because my cortisol is definitely in the normal range and the treatment for that would be: florinef and steroids but last time I tried those two treatments I had a very bad reaction especially florinef was quite an extreme neurological reaction. I just mention all this in the hopes that someone might have some input because I believe it is all connected. 

I do eat a lot of salt and I drink the salt tablets in water sometimes but it basically tastes like salty water. I'm trying to find an electrolyte alternative but I cannot tolerate any fruit, citric acid, or potassium, so it's a very frustrating situation. Thanks for the link with sodium rich foods, that is definitely something to check out!! And yes I have IC as well I saw on website they suggested tomato soup and juice and I though my goodness that would flare my bladder for an entire month. 

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Tomato soup usually doesn’t work for me, either. But many soups without MSG and minus those things that trip off IC work for me (both store-bought and homemade). 

Bouillon (MSG-free chicken bouillon cubes) – I use to enjoy making a cup of hot, salty bouillon (hard to find in stores now but, I just discovered, still available online). 

IC-wise, I am really liking the addition of slippery elm herb (one cap at night, 400 mg) for its help with bladder soothing – less time up and down at night and quicker back-to-sleep with quieter bladder and tummy (only one time awake now vs 3-4 times a night with trouble falling back to sleep; last night I slept a record 7 hours and it feels good, but is not, unfortunately, the ultimate fix for underlying major total-body pain & stiffness). 
For serious IC flares I’ll use a little heat therapy pad; warmth in the bladder area really helps end a flare. 

As to ideas for what ails you, with regard to the catecholamine test results, that’s just a snap shot of what your body was doing at that moment. There are quite a few inherited and acquired syndromes of autonomic dysfunction/failure and autonomic neuropathies, plus a possible pheochromocytoma (tumor of adrenal gland, usually causing high blood pressure) that can affect catecholamine levels. But many things can affect their levels, too. I wouldn’t fret too much over your results. For me, I could never get off the things I take, plus coffee and nicotine, for the suggested week-long period prior to the testing the endocrinologist requested (long-shot test for pheochromocytoma). I made it part of a miserable day off my favorite things and found the odds of a catecholamine test shedding light on what ails me to not be worth the downturn in daily functionality required prior to testing. Even if I had a definitive name for what ails me, I’d still have to deal with my autonomic deficits. 

I once had a dietician back in my Lyme disease years; she was so enthusiastic about eating well that it was contagious. Unfortunately, I was so far gone she finally just said “Eat anything you can!” (I practically lived a whole year on tasty cream puffs & milk). Anyway, now with self-study nutrition I still remember this gal’s enthusiasm which encourages me today. Part of my recovery plan includes better self-nurturing. Since dysautonomia, I’ve had to work extra hard at tamping out angry feelings that my body has betrayed me – counter-productive. Giving myself better things to eat and drink is one part of rewarding self-nurturing and is interesting, too.  

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On 9/9/2021 at 12:04 PM, Rexie said:

Tomato soup usually doesn’t work for me, either. But many soups without MSG and minus those things that trip off IC work for me (both store-bought and homemade). 

Bouillon (MSG-free chicken bouillon cubes) – I use to enjoy making a cup of hot, salty bouillon (hard to find in stores now but, I just discovered, still available online). 

IC-wise, I am really liking the addition of slippery elm herb (one cap at night, 400 mg) for its help with bladder soothing – less time up and down at night and quicker back-to-sleep with quieter bladder and tummy (only one time awake now vs 3-4 times a night with trouble falling back to sleep; last night I slept a record 7 hours and it feels good, but is not, unfortunately, the ultimate fix for underlying major total-body pain & stiffness). 
For serious IC flares I’ll use a little heat therapy pad; warmth in the bladder area really helps end a flare. 

As to ideas for what ails you, with regard to the catecholamine test results, that’s just a snap shot of what your body was doing at that moment. There are quite a few inherited and acquired syndromes of autonomic dysfunction/failure and autonomic neuropathies, plus a possible pheochromocytoma (tumor of adrenal gland, usually causing high blood pressure) that can affect catecholamine levels. But many things can affect their levels, too. I wouldn’t fret too much over your results. For me, I could never get off the things I take, plus coffee and nicotine, for the suggested week-long period prior to the testing the endocrinologist requested (long-shot test for pheochromocytoma). I made it part of a miserable day off my favorite things and found the odds of a catecholamine test shedding light on what ails me to not be worth the downturn in daily functionality required prior to testing. Even if I had a definitive name for what ails me, I’d still have to deal with my autonomic deficits. 

I once had a dietician back in my Lyme disease years; she was so enthusiastic about eating well that it was contagious. Unfortunately, I was so far gone she finally just said “Eat anything you can!” (I practically lived a whole year on tasty cream puffs & milk). Anyway, now with self-study nutrition I still remember this gal’s enthusiasm which encourages me today. Part of my recovery plan includes better self-nurturing. Since dysautonomia, I’ve had to work extra hard at tamping out angry feelings that my body has betrayed me – counter-productive. Giving myself better things to eat and drink is one part of rewarding self-nurturing and is interesting, too.  

It was 24 hour and they had me repeat it. I don't drink, smoke, or do any coffee as all stimulants make me very tired and coffee would affect my bladder and makes me tired. I do think I need scans of my adrenals but they keep telling me to go back for more blood work and I think I mentioned before, getting blood drawn for me lands me in bed very ill for days so I'm not keen on this continuation of being sent to the lab. However the testosterone total free is scarily high, a different endocrinologist said it was in the tumor/cancer range, and then the bioavailable, the DHEA, and these are results after a lot of blood work month after month. I have the awful accompanying symptoms of weight gain, acne, tons of hair loss on my head, hair growth elsewhere, and really extreme fatigue but I don't have ovary cysts and I have normal really heavy periods.

Thanks for calming me down though, my cardiologist wanted me to get off of Bystolic but it ended up very badly and I haven't recovered. The scary part is my continuation of getting worse and worse and all this after being on extreme immunosuppression drug for chronic blood cancer which seems to have destroyed my autonomic nervous system as things were never this bad (I was taken off of it after my WBC count got to an extreme low). I think my cardiologist is correct in immediately referring me to a neurologist to check for a neurological infection but the wait is very difficult. Before taking the cancer medication I was living an okay life, at least I could sit up, walk some, do things I enjoy, but wiithin 3 months on the medication all was taken away. My friends don't even know that I'd already been bed bound for years prior and 10 years homebound and worked so hard to get better and then to be so fleeting. I have never really received proper autonomic treatment so hopefully that will help. I will definitely look into your suggestions for IC but there's more going on like bladder outlet obstruction. I can only drink purified water and vanilla almond milk, I don't eat much meat (mostly pescatarian), and if I eat something heavy in carbs it just sends me into a comatose but one of the things I really enjoy is chocolate (and light sweets), it actually helps me though I know others here have had varying experiences. Fruit was always my favorite growing up but when I was 16 years old I went on vacation with family and we all ordered this fruit plate with yogurt for breakfast and I ate a lot, afterwards I had to stop every 15 minutes to urinate and they ended up dropping me off back at the apartment and it just went on all day so it was then I realized I couldn't eat fruit (I can do mango every once in awhile and pear). 

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I’m just going to plunge into a few things that you or others might find useful. 

Catecholamines function as neurotransmitters (chemical messengers that transmits signals across nerve endings in the body) and they also have significant hormonal functions, working to ready the fight-or-flight response. Catecholamines play a crucial role in regulating vascular smooth muscle, airway smooth muscle, and cardiac muscle function and tone. The body produces catecholamines in the intestines, brain, nerve tissues, and adrenal glands. 

The main types of catecholamine are dopamine, epinephrine (adrenaline), and norepinephrine (noradrenaline). Once made, approximately 97% of the dopamine in blood plasma is normally immediately inactivated by SULT enzymes leaving it in the inactive sulfonated form. Unsulfonated, or free dopamine is the precursor to the other catecholamines norepinephrine and epinephrine. These also circulate primarily in inactive sulfonated forms (norepinephrine ca. 73% sulfonated, epinephrine ca. 84% sulfonated). 

There are lots of catecholamine-containing food products out there to eat - fruits (bananas, pineapples, etc), fruit drinks, vegetables (potatoes, tomatoes, peppers, etc), nuts, and beans. These will all affect the level of free and bound (inactive sulfonated form) neurotransmitters in your body.

So, while catecholamines are good and necessary, often used medicinally, too many are harmful and increased concentrations of circulating free catecholamines are shown to have significant health impacts on metabolic functions including potent regulation of steroids, thyroid and peptide hormones, oxysterols, pheromones, selectins, and neurotransmitters with clinical focus primarily on three common symptoms: blood pressure, headaches (specifically migraine headaches), and palpitations (specifically atrial fibrillation). Excess catecholamines have been implicated in some of the rarer cancers. Sulfotransferases (SULTs) enzymes catalyze the sulfonation of catecholamines and protect humans from excess catecholamines. 

Five sulfotransferase (SULT) enzyme families and their corresponding genes are known in humans, each targeting different substrates for sulfonation. Within the very important SULT 1 category, SULT1A focuses on phenolics and catecholamines; SULT1B focuses on thyroid hormones; SULT1C handles xenobiotics (chemical substances that are foreign to us, e.g. plant constituents, drugs, pesticides, food additives, industrial chemicals and environmental pollutants); SULT1E deals with estrogenic steroids. SULT2 enzymes sulfonate neutral steroids and sterols, while SULT3 catalyzes the formation of sulfamates. SULT4 and SULT5 are not fully characterized. 

Faulty or defective SULT genes can impact the corresponding SULT enzymes' abilities to protect against excess catecholamines. There is a genetic test for SULT1A1, I’m not sure about the other SULTs. 

Natural substances in many foods have been found to inhibit these SULT enzymes, too, and any SULT1A inhibition could have serious consequences for some people. Ingestion of SULT1A inhibitors can lead to catecholamine increases, blood pressure changes, migraine headaches, atrial fibrillation, and undesirable changes in other bodily systems. SULT1A inhibition prevents normal catecholamine deactivation; it does not create catecholamines. It is believed that susceptible people probably have lower-activity SULT1A alleles. A person’s response to SULT1A inhibitors will depend both on the inhibitors ingested and the person’s version of the SULT1A genes. There is a handy table of SULT1A and SULT1A3 inhibitors here: 

Toxicological effects of red wine, orange juice, and other dietary SULT1A inhibitors via excess catecholamines, Ken Eagle, Food and Chemical Toxicology, Vol. 50, Issue 6, pp. 2243-2249; 2012
https://www.sciencedirect.com/science/article/pii/S0278691512001871    

Some of the known inhibitors of SULT1A enzymes by food constituents and additives include Annatto (yellow to deep orange-red food coloring from made from the seeds of the achiote tree), Blackcurrant, Blueberry, Brandy, Cauliflower, Cherries, Chicory, Chocolate, Cinnamon, Cocoa, Coffee, Coffee beans, Cranberries, Dates, Fennel, Gin, Grapes, Grapefruit, Lemon, Lime, Lingonberry, Muscadine wines, Mustard, Olives, Onion, Orange, Pecans, Peppermint, Plum, Red food coloring (Synthetic colorant E122), Red wine, Sherry, Sunflower seeds, Tea, Turmeric, Vanilla, Yellow food coloring (FD&C Yellow 5), Vinegar, Vodka, Walnuts, Whiskey, and White wine.  

I do best if I avoid many of these foods, spices, and beverages on the list that do trigger migraines for me such as chocolate and vanilla (I use to be a chocoholic and love vanilla). For people with serious heart issues or other conditions believed to be caused by SULT inhibitors, elimination of these foods and things from the diet seems effective. Both your cardiologist and neurologist should be aware of SULT inhibitors. I know you love chocolate and vanilla but maybe going without them and other things on the inhibitor list for a month or so might be a good test you could try yourself. Here is a case report of successful treatment through diet changes: 

Food-Related Atrial Fibrillation? The Potential Role of Biogenic Amines in “Nutri-Arrhythmias” Genesis, Maria Alessandra Gammone et al, Reports 2019, Vol. 2, Issue 1; MDPI; 2019: https://www.mdpi.com/2571-841X/2/1/1 

Sometimes in life it is far easier to get into things than out of of things. While we can live awhile on a bad diet, a better diet is desirable. It takes many months to come back from nutritionally incorrect eating. The same goes for activity. My main focus after HSV-1 encephalitis was to get up or at least sit up as much as possible, gradually increasing walking and other activities. This was challenging for a time because all my sense were crossed which caused me to stop in mid-step fascinated by the sight of a lizard or arrested by floral or grass scents I just wanted to dissolve into, and even a few hallucinations where an ordinary prickly pear bush became one of the most gloriously alive and pulsing things I’d ever seen, or when I'd get totally side-tracked as by a lady in pink I was suppose to be talking to and whose pink outfit caused my whole mind to fill with only pink color making sight and speech impossible. Once able to eat again (and mental filters were restored) another challenging area was diet and eating right which was hampered not only by finances, but by the fact that encephalitis totally wiped-out food from memory (What is it? Do I like it? How do I fix it and store it?). For the first month after acute encephalitis my head hurt so bad and I was so nauseated that all I could manage was Hawaiian Punch & Ginger Ale (clerks, when I was able to stagger to the store, would cheerfully ask “Having a party?” To which I’d smile and think “Only in my mind”). I had Meals on Wheels for awhile some months after acute encephalitis which helped me remember foods as I studied their nicely labeled lunches, often my only meal of the day Monday through Fridays. Later while on SSI for a few years I did have food benefits which helped with food expenses, but shopping was a trip at first and I often wanted to just sink into a store floor looking at aisle upon aisle of foods I didn’t recognize. As all that improved and shopping, fixing and eating became easier, my endocrinologist and other docs made sure I knew the importance of magnesium, Vit D, and other things in my diet. I do feel better eating better and being as active as possible. 

I don’t like the predatory idea that my diet includes meat, poultry and fish, but for eons this is how humans have fed themselves. I usually remember to thank the chicken, cow, pig, fish or whoever for its sacrifice or offer up a small prayer for them before eating. It’s interesting that I feed my dog and kitties without much of a thought about their high-protein animal-based diets. 

We all need potassium and it's widely available and hard to not get. Select fruit is nice in small amounts for me, as are a few trusted greens with some good protein; I would never eat an all salad or all fruit meal (I don't think it's the potassium they offer but rather the SULT1A inhibitors some of them contain that bother me).  

This is a good read on testosterone and the adrenergic system although it is a bit deep. The adrenergic system is greatly influenced by catecholamines, either by their lack or excess. 

Androgen Effects on the Adrenergic System of the Vascular, Airway, and Cardiac Myocytes and Their Relevance in Pathological Processes, Abril Carbajal-García et al, International Journal of Endocrinology, Vol. 2020, Article ID 8849641, 25 pages, 2020
https://www.hindawi.com/journals/ije/2020/8849641/ 

One other thing for your consideration - Anti-NMDAR encephalitis, a type of relapsing and remitting autoimmune encephalitis predominantly associated with young women where around 40–60% of the cases are associated with a malignancy, most commonly an ovarian teratoma. Despite systematic screening for neoplasms, no clinically detectable tumor can be found in all cases. There were quite a few Anti-NMDAR people in an encephalitis group I use to belong to and they were all doing very well after diagnosis and treatment. 

Longitudinal brain morphology in anti-NMDA receptor encephalitis: a case report with controls, Heikki Laurikainen et al, BMC Psychiatry, Vol. 19; 2019
https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-019-2141-4 

Investigation of patients with atypical or severe hyperandrogenaemia including androgen-secreting ovarian teratoma, Michael Conall Dennedy et al, Eur J Endocrinol., Vol. 162(2), pp.213-20; 2010 
https://pubmed.ncbi.nlm.nih.gov/19906851/ 

Frankincense is a very nice and healing essential oil (1:20 oil to carrier oil or lotion) for scratches & wounds, itchiness, mosquito bites, Covid shot arm discomfort, etc., and it is good at reducing wrinkles in old-timers. It has anti-bacterial properties and might help acne. It has no nervous system effects on me (and I’m pretty sensitive to dermal inputs) except its smell is rather pleasantly uplifting (I did find one reference that mentioned it might decrease blood pressure, heart rate, and glucocorticoid levels). 

I know things are more interesting and less frightening when it’s not about us and our own bodies but try not to be alarmed by anything I wrote. 
Just remember – never give up. There are always answers or work-arounds that make life better. 

Hope your weekend is as nice as possible! 

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On 9/10/2021 at 12:50 PM, CallieAndToby22 said:

I have the awful accompanying symptoms of weight gain, acne, tons of hair loss on my head, hair growth elsewhere, and really extreme fatigue

@CallieAndToby22 Hi - your post reminds me of something that ended up being essential in helping to improve my dysautonomia. When I first became severely ill with HPOTS I also developed generalized joint pains and IC as well as severe GI inflammation and acne at the same time. Over the years we were able to improve one by one. Today I have mild GERD, IC and clear skin. I saw a rheumatologist twice who ruled out AI disease and started me on steroids, which shot up my BP and landed me in the hospital ( 2 years ago ). Thankfully my wonderful autonomic specialist does research on the current leading findings of POTS being an inflammatory condition: meaning that chronic inflammation - may ot be neurological or otherwise caused - can and will cause dysautonomia in predisposed individuals. Back in December 2020 he started me on Plaquenil and I have sooo much improved! No more acne, all jointpains are completely gone ( I even had a constantly swollen knee and triggerfinger, all gone ), my IC is very bareable and my stomach is very well controlled. In addition my HR and BP are mostly in the normal range ( that is with IV fluids 3 times a week at home. 

I also used to take turmeric supplement for the inflammation with great results, since I cannot take NSAIDS. It is a powerful and effective little herb, and even used and known in the modern medicine world. 

Low histamine diet may be helpful too. Good luck!

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Pistol this is really interesting I believe my pots is influenced by chronic inflammation . Just started a pots flare two weeks ago all my auto immune diseases in full flare up along with swollen finger joints burning  and crawling skin sensation which is only helped by ice packs . 
I am going to have a go at low histermine diet and Turmeric . 

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On 9/2/2021 at 9:50 PM, Sushi said:

testing showed that I had an overly eager parasympathetic system (not the usual over active sympathetic system) and I benefitted enormously from Strattera which increased norepinephrine in the synapses.

@SushiWhat sort of tests did you have?  I have bradycardia in the evenings and at night which isn't that common in POTS people but which might make more sense if my parasympathetic system is overactive.  My POTS is quite severe - my HR is 150BPM+ after no more than 5 minutes of being upright and it is not well managed as I haven't found any drugs that helped that didn't cause problems that were worse than what I was already dealing with.  BB's dropped my BP too low, Ivabradine made my bradycardia worse and Fludrocortisone  and SSRIs/SNRIs just did nothing at all. 

Do you have ADHD symptoms or is the Strattera being used off-label?  When I googled it it seemed to be contra-indicated for POTS but I'm assuming that is for people whose sympathetic system is overactive.  When I was bedbound I took Modafinil and I did get some benefit from that but after a few years I stopped taking it as the effects had worn off.  My GP would probably let me trial it if I could show her some evidence it might help me (my cardiologist won't prescribe anything that isn't a cardiac drug as he won't prescribe anything if he doesn't understand how it works eg neurological drugs).

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cmep37 asked Sushi: "Do you have ADHD symptoms or is the Strattera being used off-label?  When I googled it it seemed to be contra-indicated for POTS but I'm assuming that is for people whose sympathetic system is overactive.  When I was bedbound I took Modafinil and I did get some benefit from that but after a few years I stopped taking it as the effects had worn off.  My GP would probably let me trial it if I could show her some evidence it might help me (my cardiologist won't prescribe anything that isn't a cardiac drug as he won't prescribe anything if he doesn't understand how it works eg neurological drugs).

Not to highjack Sushi's possible response, but because it interests me as being potentially useful for my low blood pressure and orthostatic hypotension, here's some info on and references for Strattera which is a brand name for atomoxetine, and also a little info on how atomoxetine compares to Midodrine. I haven't tried either atomoxetine or Midodrine. 

Since atomoxetine is a selective norepinephrine (noradrenaline) transport blocker (reuptake inhibitor/selective inhibitor of the presynaptic neuronal uptake of noradrenaline), it causes increased blood pressure by increasing noradrenaline concentrations in peripheral sympathetic neurons, an effect sometimes masked in healthy, normal people by central sympatholytic mechanisms. Atomoxetine has been shown to increase norepinephrine levels as well as dopamine levels because norepinephrine receptors are also sensitive to dopamine and it can be useful in ADHD, as an antidepressant, and in cases of narcolepsy. 

It is suggested that patients be screened for heart defects before taking atomoxetine. Atomoxetine can increase depression and suicidal ideation in some cases. Side effects include dry mouth, loss of appetite, nausea. vomiting, abdominal pain, constipation, headache, dizziness, irritability, dyspepsia, somnolence, fatigue, palpitation, racing heart, hypertension, postural hypotension, urinary retention, and sexual dysfunction. There may also be a risk of dyskinesia (involuntary movements, facial tics, tremors, fidgeting, writhing, speech disturbance, etc.) when atomoxetine is combined with dopaminergic, noradrenergic, or serotonergic medications. 

For people with autonomic dysfunction, there have been many studies of the use of atomoxetine over the years. It has been found that atomoxetine acutely increases sitting and standing systolic blood pressure in patients with central autonomic impairment by 54 and 45 mmHg respectively, compared with placebos. However, in those with peripheral autonomic impairment, atomoxetine has no pressor effect. This possibly suggests that a functional central sympatholytic pathway is essential to avoid hypertension in patients taking atomoxetine. Health care practitioners suggest caution when atomoxetine is used in patients with autonomic impairment. 

A pressor reflex is a nerve reflex that constricts arterioles (small blood vessels) and thereby increases the blood pressure. A pressor substance is any substance that elevates arterial blood pressure.

The autonomic nervous system is responsible for maintaining blood pressure in the upright position. The sympathetic nervous system is maximally activated in the upright position. 

Midodrine, an α-1 adrenergic agonist, is a direct vasoconstrictor, improving upright blood pressure and orthostatic hypotension-related symptoms. Midodrine has become a popular treatment in patients with autonomic failure and neurogenic OH. 

Atomoxetine is judged to be superior to midodrine for the treatment of orthostatic hypotension in autonomic failure. Atomoxetine produces a greater pressor response in upright systolic blood and upright diastolic blood pressure compared with midodrine. Furthermore, atomoxetine, but not midodrine, improved orthostatic hypotension-related symptoms as compared with placebo. 

Atomoxetine is metabolized in the liver; it has a half-life of 6 hours in most individuals (extensive metabolizers) but 19 hours in poor metabolizers. 

Efficacy of Atomoxetine Versus Midodrine for the Treatment of Orthostatic Hypotension in Autonomic Failure, Claudia E. Ramirez, et al, Hypertension, Vol. 64(6), pp. 1235–1240; 2014: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4231172/

“Atomoxetine” in Meyler's Side Effects of Drugs (Sixteenth Edition), The International Encyclopedia of Adverse Drug Reactions and Interactions, pp. 738-740; 2016 

“Atomoxetine” in Ch. 23: Pharmacological cognitive enhancers, MacKenzie R. Peltier, Mehmet Sofuoglu, in Cognition and Addiction, 2020

“Atomoxetine” in Current Trends in the Pharmacological Treatment of Autism Spectrum Disorders, Alexander Kolevzon, in The Neuroscience of Autism Spectrum Disorders, 2013 

“Atomoxetine” in Ch. 22: Depression, attention deficit hyperactivity disorder and narcolepsy, Derek G. Waller et al, in Medical Pharmacology and Therapeutics (Fifth Edition), pp. 297-310; 2018 

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13 minutes ago, Rexie said:

Atomoxetine is metabolized in the liver; it has a half-life of 6 hours in most individuals (extensive metabolizers) but 19 hours in poor metabolizers.

Can't help but thinking the half life being a problem for us folks with nOH as most experience supine hypertension (i do) and the issues that we go thru with liable bp's (so my highs would get to high)

I have trial'd pyridostigmine as it does not affect the supine hypertension and has a short half life so you can take it a dinner time and it won't follow you into bed time. I do have to say it is effective for mild nOH symptoms but can't imagine it working with severe cases. we did track my bp changes and they went up 5 mm Hg both on the systolic and diastolic

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@Rexie thank you - the articles look interesting and atomoxetine is a drug I haven't read anything about.

@MikeO I would be taking atomoxetine for POTS rather than nOH - generally my BP stays around 100/80 when upright but my HR is 150BPM+ after 5 minutes.  Have you tried Midodrine? - it has a short half life (for me just less than 4 hours) and although it did give me rebound hypertension I don't think many people experience that.  

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2 hours ago, cmep37 said:

Have you tried Midodrine? - it has a short half life (for me just less than 4 hours) and although it did give me rebound hypertension I don't think many people experience that.

No and i don't think my care team will even go here. My HR has been better since i got off the offending drugs (lisinopril and losartan) but my bp's have been all over the place. I do suspect we will end up with a short acting agent to handle (as needed) the spikes in blood pressure (nitro patch maybe?)  and yes the low (tanking bp's) do hurt (and to be honest sucks) but i know that living at a 198/100 is not helping. Big Hugs!

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15 hours ago, Rexie said:

Mike, people who use atomoxetine in certain autonomic disorders take it twice a day. Doesn't interest me at all now for my case, but interesting anyway...

Yes this is interesting. I am sure some folks benefit from the drug.

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Water and blood pressure - also interesting... (care givers recommend lots of water but don't tell you how to drink it) 

Rapid water drinking (16 ounces/480 mL) increases sympathetic activity through pressor response mechanisms and profoundly raises blood pressure in people with autonomic failure (33-44 mm Hg) and substantially in older normal people (11-13 mm Hg). Rapid water drinking raises plasma norepinephrine as much as classic sympathetic stimuli such as caffeine (16 ounces coffee) and nicotine (2-4 cigarettes). The effect of rapid water drinking can be exploited to improve symptoms due to orthostatic hypotension. 

The pressor response is evident within 5 minutes after water drinking starts, reaching a maximum after about 30 to 35 minutes; it’s sustained for longer than 60 minutes. 
The pressor response after drinking either cold or warm water is almost identical. Drinking 16 ounces/480 mL water causes a greater pressor response than drinking 8 ounces/240 mL water. 
There is a concomitant decrease in heart rate of about 5-7 bpm below baseline 20 minutes after drinking water. 
Norepinephrine (plasma measurement) increases thirty minutes after water drinking. 
The increase in plasma norepinephrine concentrations is thought to be due to sympathetic activation causing increased spillover of norepinephrine from adrenergic synapses into the systemic circulation or to a decrease in norepinephrine clearance. 

Even water drinking comes with some warnings. In some people with autonomic dysfunction, water drinking increases systolic blood pressure by more than 100 mm Hg, which can result in dangerously high blood pressure in the supine positions. In these people, water drinking should probably be avoided for about an hour and a half before going to bed. 

I’ve been trying out quick water drinking for correction of low blood pressure dips which don’t resolve without some help. Yesterday I was flying around cleaning before a porch visit from clients to visit their kitten. I was just about to shower when they showed up way early. This was stressful for me, as was the outside temperature of 90F (32C), causing my standing blood pressure to be a little unpleasantly low after the visit (82/54, heart rate 100). Since it was well after lunch and before dinner and a good time for testing, I decided to try quickly drinking 12 ounces of cool water. After 15-20 minutes standing bp was 107/83 with heart rate of 86. Another 20 minutes playing phone games passed and I went for a walk outside (88F/31C ambient). After the walk bp was 92/58 with heart rate 88 – pretty good for me considering exertion and heat. Blood pressure stayed that way all evening. 

What goes in must come out. Pressor effects (and increased blood pressure) are triggered by a full bladder. Athletic quadriplegics who rely on catheterization to empty their bladders have been known to not empty their bladders before sports competitions to increase their blood pressure (and power and strength), a practice called “boosting” that has been banned due to negative health consequences. 
If I want to take my blood pressure and suddenly have the urge to pee, blood pressure will always jump higher, putting me into a temporary normal range of 120/80. After voiding, bp will then be its usual pitifully too low (below 90/60).  

The Pressor Response to Water Drinking in Humans - A Sympathetic Reflex?, Jens Jordan et al, Circulation, Vol. 101, Issue 5; pp. 504–509; 2000
https://www.ahajournals.org/doi/epub/10.1161/01.CIR.101.5.504 
 

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10 minutes ago, Rexie said:

If I want to take my blood pressure and suddenly have the urge to pee, blood pressure will always jump higher, putting me into a temporary normal range of 120/80. After voiding, bp will then be its usual pitifully too low (below 90/60)

Interesting. I know my nurses keep telling me to pee first in the morning before taking my bp's. I think i am going to track this and get some readings before and after.

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