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Postviral POTS


Finnmin

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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.

 

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Hi!  I can only address one of your questions, and only a little bit - #5.  I am not yet officially diagnosed with POTS.  I've had symptoms since 2004 after I had mono.  I acquired a long list of psychiatric [mis]diagnoses, one of which was a personality disorder.  I got borderline personality disorder based on past of self harm, disordered eating, and irritable outbursts. However, I have learned since that my irritability is perfectly correlated with orthostatic hypotension.  If I stand long enough that my heartrate gets <120 bpm, I get irritable.  When I lie down and put my feet up, irritability evaporates.  I've also learned that the endogenous opiods which are released during self harm regulate the circulatory system, while maladaptive, there's reason why I "felt better" after.  My disordered eating is actually chronic / intermittent nausea which is worse after drinking water and relieved by salt.  I'm annoyed with getting diagnoses based on cherry picked symptoms.  No doctor has ever looked at all of my symptoms together.  I'm hoping that adding orthostatic tachycardia will help get some better answers.  I have a doctor appointment next week to try!

Has your husband tried compression garments?  I bought compression calf sleeves for running as an inexpensive experiment.  It's amazing!  My heart rate was <30 bpm and I could tolerate more activity.  I went shopping and overdid it and spent the next day in bed. :rolleyes:. But it really helps with the heaviness and vein pain!  

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Sometimes you have to try a few different beta blockers to find one that works for you. If he tries a low dose at night, maybe that would work? Also the fatigue wears off once your body gets used to the BB.

With high BP I would be reluctant to try salt or compression hose unless your dr approves.

Does the exercise make him sick, or does it just not help?

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Hi Finnmin, welcome to the forum!

Your husband's experience sounds exactly like mine.  I am a male and I had the same symptoms including the low testosterone.  Increased heart rate and blood pressure while standing was a problem for me, but stress has been even worse.  My hands and feet are even still chronically tingly / burning, and they are often discolored with bulging veins.  My face would get extremely pale skin when I would get symptomatic.  I am nearly positive that I have what Julian Stewart calls "low flow pots".  It is basically a dysfunction of the renin-angiotensin-aldosterone system that results in hypovolemia and chronically high levels of angiotensin ii.  Ang ii causes a lot of different problems.  It is a very potent vasoconstrictor, which causes high blood pressure and is probably what causes the issues with my hands and feet due to peripheral vasoconstriction.  Stewart notes that ang ii leads to oxidative stress and increased levels of norepinephrine.  Angiotensin ii could explain the low testosterone since the leydig cells in the testes have ang ii receptors that can stop the production of testosterone.  I came across some research (Karin Viena Weisshemmer et al) where they tested this this theory in male rats (http://www.sciencedirect.com/science/article/pii/S0018506X12001377).

I detailed out what I did to get back on my feet again in this post here: http://www.dinet.org/forums/topic/28157-hormones-and-pots/#comment-260166

 

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Hello

 

I was born with Ehlers-Danlos type 3 and I had several knee dislocations early on it life and signs of EDS. Fast forward to 1984 when I got the Epstein Barr Virus which resulted in Glandular Fever. I never recovered from it and the main symptom was extreme fatigue. lethargy and brain fog. Eight years after this I saw information about ME/CFS and it seemed to appear at that time that this was what was wrong with me. I got a diagnosis by a professor of neurology. I believe now that it was in fact autonomic dysfunction possibly triggered by the EBV and surgery. My symptoms waxed and waned over the years and around 1996-2004, I was really improving. I had changed my diet in 1993 and lost heaps of weight and I hardly ate any wheat and went vegan and over the years I improved. But in 2004 I started to eat sugars and wheat again and then my health started to decline. By 2007 I was really ill and was in A&E 7 times and admitted twice with severe neuropathy and as I know it now POTS. My BP was extremely low and HR high. I couldn't walk and was very unwell. They didn't diagnose me then and I didn't get a diagnosis of EDS until 2013 and POTS 2015. 

I have continued to have the whole body neuropathic pain and POTS. I may have Mast Cell Activation as I have many problems with allergies, food intolerances and IBS. I have now modified my diet (I follow Yasmina Ykelenstam's low histamine, low inflammatory diet and it has really helped me) and do recumbent bike and floor exercises. My cardiologist wants me to work harder at it but my joints suffer and heart/BP go berserk (Yasmina says no to heavy workouts as it triggers histamine in the body which causes inflammation)! With the nerve pain I am supposed to do low impact exercises and with the EDS I am supposed to do resistance work but not stretch the ligaments and tendons. So exercise can be an issue. I drink 3.5l of water per day. I have the head of my bed raised. I do meditation. I have always been sensitive, but have put it down to my health condition as it has worsened since I got EBV. If your nervous system is affected then you will be hypersensitve and stressy. I just see a cardio now every 3 months. I am on 2.5mgs of Ivabradine per day for POTS. I cannot tolerate a higher dose. Beta blockers made me feel very unwell with more flushing and may have made the mast cell issue worse. 

My worst symptoms now are severe burning nerve pain (caused by blood pooling), tachycardia and missed beats, brain fog, dreadful memory, eye problems, headaches, IBS, gastropareris, nausea, weakness, breathlessness, muscle and joint pains and many more symptoms. 

Over the years the diagnosis of ME didn't help as most doctors didn't believe it. Many thought I had anxiety as I had tachycardia. 

I hope this may help you as I know how awful this is! All the best. 

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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. :)

 

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Here's how my pots onset:  I was just at work one day and out of nowhere I got really woozy to the point where I felt like I was going to pass out.  A few minutes later my heart started pounding at a really intense rate.  I went to the ER but by the time I got there things had calmed down somewhat, but my blood pressure was about 150/105 with a supine heart rate of about 110.  They did an EKG and did some blood work, but didnt notice anything else wrong.  

Over the next 2 months or so, I was practically bed ridden.  Intense brain fog, pre syncope, constant eye pressure, scary blood pressure spikes from any activity or anxiety, red ears, pale skin that people described as yellow or gray when I was symptomatic.  I went to a cardiologist, an endocrimologist, a couple of different family doctors, and had a holter monitor, 2 echocardiograms, 2 stress tests, an MRI, a renal ultrasound, and lots of lab work that turned up nothing.  My cardiologist thought it was just anxiety.  I also went to the ER a couple of times - once because my hands and feet were so tingly and they were going numb after I attempted to mow the lawn, and another because my blood pressure got up to 180/120.  I got lucky that I found a family doctor that had treated a lot of pots patients.  He diagnosed me after drawing my blood after laying down for 10 minutes, then again after standing for 10 minutes.  My norepinephrine levels were really high during the standing blood draw.  He then sent me on the right track.  It took a few months of playing around with the sodium and clonidine dosages before I got back to being stable.

I'm not really sure why it started, and I am still have some issues like tingly hands and feet and the occasional wooziness and norepinephrine attacks, but when these things happen, but now that I understand what is happening and why, I know how to handle them.  Studying Julian Stewart's publications and studying the renin-angiotensin-aldosterone system made a huge difference. My pots doesn't prevent me from doing anything that I want to do anymore.  I am back to work, I do yardwork, go to the kids soccer games, etc.

I haven't noticed benefits to my pots symptoms from the testosterone replacememt, but I sure have noticed that I have a lot more energy and just generally feel better.

My recommendation would be to ask the doc that you are visiting next week to do the lay down / standing up norepinephrine blood draws.  

Please let me know if you have any other questions.  Good luck with that appointment next week and please keep us posted.

 

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On 4/15/2017 at 5:58 PM, Finnmin said:

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. :)

 

Hi Finnmin, I would definitely ask your doctor or pharmacist before changing the time of day to take the medicine.  You'll get some wonderful advice here on the forum, but always best to consult your doctor before making any changes.  I believe they would easily explain any of your husband's concerns.   

If you take tylenol in the morning or at night - it's the same medicine, it should not be any more or less risky based upon the time of day.  Beta blockers are a bit more complicated than tylenol, but it is the same concept.  It should not be dangerous just because you rake it at night - it might be a but weaker in your system by the time you wake up - the reduction in heart rate may be less, but there will also be fewer side effects. As I mentioned, as your body gets used to the beta blocker, over a long period of time, like a few months, the side effects will often start to wear off a lot.  

Again, your doctor is the best person to talk to.  But the reason I think that a beta blocker is worth retrying is that your husband has both high HR and high BP, and both symptoms are treated with beta blockers.  Many/most of the other dysautonomia drugs increase blood pressure.

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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.

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100 mg.  I actually jumped from .1 mg of clonidine to .4 mg on the same day that I started in the losartan (which was too much for me by the way), so I'm not exactly sure what immediate benefits came from the losartan vs the additional clonidine.

How is your husband responding to the treatment?

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On 30.4.2017 at 4:28 AM, haugr said:

How is your husband responding to the treatment?

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.

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