Finnmin

I'm sorry there's no treatment, recurring infections are awful. I suspect autoimmunity in my husband's case too, so I'm probably over-analyzing his test results, hoping to find the virus that did this to him. High A & G, low M, these could mean something - or nothing, because they're all within the normal range.

Now we're truly baffled by this illness... I gave my husband pseudoephedrine hydrochlorid (allergy drug that he has taken before POTS) and put compression stockings on him for the first time, nervously I monitored his blood pressure in fear of terribly high readings because of the double vasocontrictive effect on top of his normal bp of 145/95.... But his blood pressure was 125/85! First time in ages without a beta blocker! I can't figure out how this is possible. He says he didn't feel any better today, but I noticed he was more active, so we'll continue this trial tomorrow.

I'll post more questions under this thread, so that I wouldn't flood the forun with lots of new topics... Do you know what's the mechanism behind instant immediate tachycardia upon standing, versus a tachycardia that comes with a delay and builds up slowly? Does the fast reaction come from the baroreflex? The tilt table test instructions say "tachycardia within 10 minutes", my husband always gets an instant reaction and keeps a steady 120 bpm pulse when he stands, so I'm wondering if this is another clue to his POTS subtype.

Do you know if the immunoglobulin A, G, E and M levels have anything to do with POTS? Though my husband has all of them within the range, his IgA is in the top of the range. He doesn't drink, no celiac disease, no hepatitis, so I'm wondering if POTS is behind this. S -IgA 4.34 g/l (0.88-4.84) S -IgE 48 g/l (below 110) S -IgG 12.5 g/l (6.77-15.0) S -IgM 0.92 g/l (0.36-2.59)

That could be it. Did you by any chance have your prolactin and SHBG mesured when you had low T? My husband is wondering if norepinephrine or something about POTS made both high (but still within normal range), we've heard that prolactin might cause fatigue and SHBG binds testosterone making it unavailable.

I've also made this observation: when my husand crashes and he has to lie down, he recovers faster if he lies on his side and not on his back. I'm wondering if this happens because he's gained a lot of weight during POTS and it's all in the midsection of his body, what if his belly presses down on the abdominal aorta?

What kind of readings have you gotten from the oxymeter? Do you have POTS? Since you have had access to extra oxygen, can you describe how it makes you feel? I've wondered why there aren't any oxygen treatments for POTS patients, if lack of oxygen causes the horrible feeling of brain fog, fatigue and cognitive dysfunction, there must be some sad truth about it not working, that I haven't read about yet... I'm going to get a pulse oxymeter for my husband, and I'm already nervous about what readings we'll get and what to do about it. Good luck and please tell us what the pulmonologist says!

#1 Ah, it's me with the lazy yawning pulse who is odd then! My husband yawns repeatedly for several minutes during his yawning episodes, and feels a bit refreshed when it's over, so perhaps it's the combination of more blood flow, oxygen and some stress releasing hormone that does it. Simply breathing deeper or fake yawns do nothing. :/ #3 He inhales and holds it for about 8 seconds, then continues to breathe normally without gasping for air. He was a shallow and rapid breather before POTS, and still is, but he didn't hold his breath back then. I used to try to match my breathing to his and I always got dizzy trying, it felt like hyperventilation. I don't understand how a big man can live breathing like a baby! But nevertheless he was a powerhouse back then. He seems to hold his breath more when extremely fatigued, but he says he doesn't do it because he's too tired to breathe, he doesn't know why he does it. He locks his airway during it, so I'm wondering if his body is trying to do the Valsalva thing to him on purpose. He's mostly not tachycardic or bradycardic when he holds his breath.

Does any of you experience these symptoms, and do you know what is the mechanism behind them? 1) You yawn and your pulse rises immediately and stays up till the yawn is finished. 2) You change your position, turn your head or something minor like that, and you skip a heart beat, OR your pulse speeds up during the movement. 3) You unintentionally hold your breath often, without noticing (untill someone mentiones it to you). Perhaps these are normal findings, I compare my husband to myself, so there might be something odd about me instead! Have you made other observations like these that seem odd or off to you, and you know it's your dysautonomia?

This is very interesting. Ever since I read about the discovery of alpha 1 adrenergic receptor autoantibodies in some POTS patients, I've been trying to read the signs if my husband is one of them. And if so, what to do about it, since his normal blood pressure is high and there for vasoconstrictors might make his bp even higher. I know that our neurologist should be the one thinking about the right medication and not I, but if he says no to vasoconstrictors, at least we could try some herbal remedy and see if there's any change. My husband has visible veins and if I block them with my finger, it looks like the blood just stays still above the block, my own vein disappears if I block it, as if the blood is sucked up by my heart or something like that... I really don't know which one is normal! The other observation I've made is that my husband's pupils dilate only moderately in dim light but adrenal or norepinephrine surges don't affect his pupils. If he has the antibodies, it would make sense? Thank you so much for this thread!

Thank you all for replying, it's wonderful to hear that there is hope for the fatigue to at least lessen in time. It's been bothering my husband for over two years now without any sign of going away, so naturally he's extremely "tired of being tired". I will definitely try those supplements mentioned here, our neurologist refused Mestinon for now.

I tried to search forum topics on this issue, but I would like to get up to date experiences from you on this one single problem: fatigue. Have you been able to reduce or get rid of chronic fatigue and how did you do it? Medication, exercise, resting, or did it go away in time by itself?

I'm surprised to find this thread! My husband used to get high fevers and strong symptoms whenever he got a cold or a stomach bug BEFORE POTS. But after POTS he doesn't get fevers and all infection symptoms are mild. We don't quite understand why. But today he finally got down with a stomach virus and developed a high fever! He suffers from a severe case of POTS, so now he feels like he's at death's door. Yet he also hopes that this fever will cure his POTS... It breaks my heart and I worry what will become of this.

I give you my respect for being able to take care of your family despite of your symptoms. My husband has his own isolated room, he wears earmuffs around our kid, he covers his eyes when he rests and we too have moved to a quiet place, these are the "tricks" that we have learned to make it a bit easier for him. He refuses any medication, except for the blood pressure ones for now. I take care of everything, so he gets his absolute quiet time and life without any obligations, but this hasn't improved his condition at all. I'm wondering if we're making his sensitivity even worse...

My husband's POTS subtype is still uncertain, but my hunch is that he's got a postviral partial dysautonomic POTS on top of a pre-existing problem with adrenaline and norepinephrine, which makes him "hyper". Before sudden onset POTS he was hypersensitive to sounds and stress, his pulse and blood pressure shot up from littlest setbacks in life, so now his normal personality combined with POTS makes a disaster! Whatever your diagnose will be, I think it's good if you're at least most of the time aware of the physical reasons behind your emotional experiences: you can make a rational decision to lie down and wait for a better mood, you can plan ahead and stick to the plan rationally. My hubby doesn't have such self awareness... I have to ask him to lie down when he's raging in his worse sickest feeling, or when he's hyperactive due to adrenaline (payback time later, not good). He comes back to his senses in 10-30 minutes, exhausted, and if he continues to rest, he becomes sleepy. He says that he realizes what happenes afterwards, but he can't learn from the experience, because he can't think straight during an episode! He talks clearly and never loses his words, he can come up with brilliant metaphores but he can't think what's best for him. It's scary. He gets POTS attacks with or without tahycardia and with or without visible pooling, I believe it's the norepinephrine, and some other factor combined that does this to him.

You're right, there IS constriction after all, I found this study: "Our results indicate that orthostatic hypertension is common and that its mechanism in representative patients involves excessive orthostatic blood pooling, which results in decreased venous return, decreased cardiac output, increased sympathetic stimulation (presumably through low-pressure cardiopulmonary receptors), and excessive arteriolar, but not venular, constriction." https://www.ncbi.nlm.nih.gov/pubmed/3980066 So the arteries constrict but the veins are floopy and blood pools, and if I understood this correctly, the reason why my husband's already high blood pressure rises even more upon standing, is the pooling in the veins. So much to learn...

I'm sorry that I can't seem to be able to figure this out, even with the constant Googling... So could you please explain to me how is it possible to have high blood pressure, without vasoconstriction? I mean, my husband clearly has some serious adrenaline/norepinephrine storming when he's upright, and his blood pressure rises from average 145/95 to 155/105, and then there's blood pooling down into his arms and legs... So if the blood pools, his veins are bulging in his purple feet and heavy hot hands -> no vasoconstriction? Then what makes his blood pressure rise? Is there any use to measure blood pressure from the ankle and compare the numbers to the results from the arm?

He's so challenging to medicate, because he's got an anti-medication personality and any side effects make him want to quit, so I started with 1/4 dose of Losartan that he wouldn't get a bad reaction to it. I'm cautiously hopefull that we have seen slight improvemen't! I've seen him more walking around the house, which is rare. If I ask him does he feel better, he says no, but I've learned to know how his illness behaves: when he feels better, he gets up and spends that energy by doing things, and so he's feeling unwell... Anyway, I'm really hopefull that Losartan will help at least a bit, but I'm quite certain that controlling norepinephrine will be the key in his treatment. We'll have to wait to ho his next doctor appointment.

@haugr, do you remember your starting dosage of Losartan and did you feel improvement right away?

My husband usually gets a morning migraine or more severe brainfog than usual if he doesn't get 8 hours of sleep. He also gets sicker if he sleeps too much! But something odd that we've noticed is that he feels a bit better if he has to wake up to an alarm clock and get up fast to go somewhere. Normally after waking up "naturally" without the alarm, he's unable to function for two hours. But unfortunately we can't use the alarm trick to skip his horrible morning fog, because the evening will be sicker for him if he's less sick in the morning... Like there's always a payback time for every second of ease from his symptoms.

So many white lines here! This certainly might point to defective adrenergic receptors at least in some POTS patients. The only time my husband got a red line was when he was feeling exceptionally good, he went out to enjoy his rare moment of orthostatic TOLERANCE and it made him crash. Thank you Clb75, I'll look into dependent acrocyanosis tonight.

I was wondering if it's common for POTS patients to test positive for Sergent's White (Adrenal) Line Test, since my husband certainly does. Medical Dictionary: "A pale streak appearing within 30-60 seconds after the skin is stroked with a fingernail, and lasting for several minutes; regarded as a sign of diminished arterial tension." I tested my husband when I didn't know about POTS and thought he might have adrenal fatigue. I myself (and every other family member I have been allowed to scratch for scientific purposes) get a red line, so there's definitely something different about my husband. I would like to know if POTS can cause this, or is my husband battling with some other condition as well. He also gets Bier spots ("ischemic angiospastic spots") on his otherwise purplish hands and feet. If you have POTS and happen to read this, would you be kind to do this test and post the result?

Thank you haugr. I try to innovate ways to relieve my husband's symptoms, but as you said, lying down is the only thing that helps. It's frustrating to see a loved one suffer, and there's nothing you can do to help. I've tried to find experiences on "bottled oxygene" products, but I know that if those would help, they'd be part of the recommended treatment. My husband suffers from anxiety, because he doesn't know why he has to lie down for over a half an hour after just brushing his teeth for a few minutes. This illness still doesn't quite make sense to us on the "molecular" level. There's no literature about it in Finnish, so I try my best trying to understand the scientific English papers... I still don't know what is the suggestet treatment, if alpha 1 adrenergic autoantibodies are behind my husband's POTS, wouldn't alpha blockers do similar damage than those autoantibodies? Our neurologist is a symphatetic one, but knowledge about the POTS subtypes hasn't reached him yet, so I'm a bit worried if he'll listen to us if/when the time comes to try more than just Propranol.

I'm known to ask a lot of questions, so please bear with me... I have tried to Google all this up, but this condition is still so hard to understand for me. I want to help my husband, who's too tired to study his own illness, so I would be greatfull if you could share your knowledge with us. Why beta blockers and such are recommended to get rid of the orthostatic tachycardia, if POTS patients NEED more oxygen in their brain, and blood pressure and tachycardia are the body's way of delivering it? Doesn't it make the lack of oxygen worse in the brain? Have you found any tricks to temporarely remove POTS symptoms, for example does bending down and putting your head between your knees make you feel better? Are there any oxygen treatments available for common people, and have you tried them? Is the horrible sick feeling of POTS really just about lack of oxygen in the brain, or would a POTS patient still be ill, even if his brain would be perfectly "oxygenated"? I know that there are many subtypes and comorbid conditions that could make POTS even worse than it's basic form might be, but if we think about for example an autoimmune POTS, would a drug that removes autoantibodies cure POTS? What confuses me is the dysautonomia: is there dysautonomia, if the cause behind the POTS is autoantibodies?

***UPDATE*** My husband was officially diagnosed to have POTS by a neurologist. Neurologist wants him to try Propranol at first with exercise, fluids, salt and elevation of the head of the bed, before experimenting with "harder" drugs.