Finnmin

Haugr, I'm amazed, your onset and symptoms are very similar to what my husband has experienced. I'm so happy to hear that after all that you've been through, you got your life back! It gives us hope. We have been trying to find other male POTS patients who don't have EDS, that we might get a little idea what's ahead of us with this illness. If gender makes the symptoms and prognosis different, I don't know, but there must be an explanation why there's such a female dominance with POTS? That's why we wondered if testosterone replacement therapy would make the illness go away, but just as my husband thought, it's not that simple, isn't it... Anyway, thank you so much, for your information! Yogini, you are quite right, we will talk to the doctor first.

Thank you for your replies! So many on this forum are seeking for advices on how to deal with dysautonomia, I wish that my husband and I could offer at least one bit of helpful information, but unfortunately NOTHING we've tried has helped him. It's so frustrating to buy new aminoacids with high hopes, only to find out that there won't be even a hint of an improvement. I hope that you have had better luck with supplements, they must do something for someone. @BuffRockChick: my husband is just like that, he gets up and is suddenly so irritated, he doesn't even realize the change himself. I ask him to lie down and soon he's calm again. We have suspected borderline personality disorder too. But before POTS it was under control, now those raging stress hormones make him more sick. Thank's for mentioning the compression calf sleeves! I ordered some and he will try them to see what they do, we'll be careful with the hypertension issue though. Good luck getting a right diagnosis at last! @yogini: thank you for the hint to take the beta blocker at night. I suggested it to him on intuition when he wanted to quit the bb, but he's too oldfashioned and believes that it would be dangerous. I'll talk to him about it again! Exercise makes him more sick during the activty, but afterwards, after lying down a bit, he's back to his usual fatigued self. What we have learned the hard way is that he must keep moving: without exercise he'll be badly deconditioned within a week, without regular exercise even the slightest of excertion makes his heart pound or skip beats. What I wonder is that why can't there be any improvement, he can't build up tolerance to exercise, he can only keep the arrhytmias away. @haugr: thank you so much for replying, we will definitely talk about clonidine and losartan with the next doctor we're going to try next week! Do you have a post somewhere telling about your POTS onset? Is it possible for you describe how/if testosterone replacement therapy helps your POTS symptoms? My husband was prescribed testosterone gel, but he refuses to use it, not believing that it would help his symptoms. We will definitely study the angiotensin research links you provided! How close to your pre-POTS health level do you think you are today? @TCP: thank you for sharing your story, you've had a lot to deal with for a long time. We haven't tried different diets yet, it's definitely something he must try, since we've tried almost everything else. I have learned to fear the name of Epstein Barr virus after all that I've read about it. My husband was tested too soon for mono to know if he had it, and too late for EBV to know if his high igM titer for EBV indicates a previous infection from his past, or was it infact the trigger to his POTS. More questions keep popping into my head, but I'd better search the forum if there are already answers out there.

Hello Everyone, I'm a wife of a 40-yearold POTS man from Finland. We had to figure out the diagnose ourselves, even the professor of cardiology in our city had never heard of POTS! Every time we see a doctor, they suspect anxiety. I feel lucky that I found this website, I really need to hear what you think of my husband's story, and what we should know about this syndrome! I apologize that I can’t make this post shorter… I hope that at least someone out there is feeling well enough to read this. My husband's story: it all started with a mysterious infection two years ago, a single swollen lymph node down on the side of his neck was painful and throbbing, but he had no fever or other symptoms. 10 days later he woke up with POTS, the illness hit him in one day with full force, and he's been symptomatic ever since, 24/7. On that awful day, he came home disorientated, saying that he felt like he was drunk or hungover (naturally without drinking at all), and as if he had been hit in the head. He's been like that for two years, without good and bad days, his days are always bad. We had to learn the hard way that standing or prolonged sitting makes him ill, before we knew about POTS, he overexerted himself every day. He feels better when he's lying down, but not well. My husband's symptoms: Average 30 bps rise in HR when supine -> standing Constant brain fog Severe fatigue Orthostatic and exercise intolerance* Cognitive fatigue, he can't concentrate for long, social events and talking on a phone wears him down fast, he can watch TV for about 90 minutes before he has to rest. Heavy limbs and arms that ache when he's resting, but not when he's standing or moving. He can repeatedly yawn for 15 minutes, feels better after such a yawning episode. Benign heart arrhythmias (extra beats or missed beats). Sensitivity to light and noise, he has to use ear protection around our child. ☹ Symptoms he doesn't have: syncope, orthostatic hypotension, post exertional malaise, gastrointestinal problems, insomnia, infections. * Simply put, he can't stand for more than 3 minutes without feeling ill, if he stays up, he will enter a presyncope state of pure agony. It's not physical pain, he says, but the feeling of discomfort is so extreme that he simply can't endure it for long, without at least sitting down. He was an athlete the day before he got sick, now all exercise is torment for him. He uses plastic plates and cups when eating, because they are lighter to lift. I help him to do everything. He feels physically weak and weighed down most of the time. He CAN force himself to do things, we go shopping or driving, take short walks, watch an online movie, but after we're done, he must lie down and cover his eyes and ears for at least 20 minutes, sometimes 2 hours is needed for moderate recovery. Tests and such: Extensive blood work, only antibodies for receptors and epinephrine and norepinephrine are untested. Everything in his blood looks healthy, except for low testosterone. Not a trace of anemia or thyroid problems. He has had an MRI of the brain, echocardiography and thorax x-ray, all normal. Finally, here are my questions: 1. Based on this information, is it possible to tell if he has ME/CFS as well? 2. How can we find out his POTS subtype? It’s quite certain that his POTS is postviral, without deconditioning, but is it possible that he's hyperPOTS? I suspect this because he has "hot flashes", he sweats, gets angry and agitated when he tries to stay up. He had elevated blood pressure before he got ill, and he still has it: his average BP is 145/95. He had a bad temper before he got ill, now he's worse, completely stress-intolerant and every time we go to a doctor, his BP and HR skyrocket and the doctors think he's got anxiety issues... His feet and hands turn purplish red with bulging veins, but not blue. I’m almost sure that he doesn’t have peripheral neuropathy despite of his leg and arm muscle aches, those aches seem to be related to "vascular things" happening when blood begins to flow in horizontal position. 3. What medication he could use if he’s not hyperPOTS, but is hypertensive? Beta blockers made his fatigue worse, so he refuses to take them even for his hypertension. We have tried bisoprolol, metoprolol and propral. 4. If exercize hasn't helped him in two years, has he done it wrong, or should he keep trying? He has been walking, gone to the gym, cycling... for two years. 5. And lastly, has any of you had a personality disorder before POTS, and how do you feel this problem interacts with POTS? My husband is oversensitive, I think it makes his POTS worse, his heart is “adrenaline sensitive” and he's more symptomatic when stressed. Thank you so much for reading this. Getting a chance to “talk” to someone AT LAST who might know what I’m talking about, is such a therapeutic relief for a worried wife.