xRobin

Maybe the florinef you're taking could be the culprit for the swelling? I think edema is one of the major side effects. Bisoprolol can cause it as well, maybe it's the combination of the two that is the problem? Bisoprolol is supposed to be the most cardioselective of the beta blockers, I'm an asthmatic and can tolerate it but many can't. I swelled up a bit when I first started the beta blocker but it's gotten a lot better. You can definitely develop asthma as an adult. I did! Good luck with your tests, I hope this resolves for you.

Hi Amy, it sounds like you have NMH more than POTS now. I was just watching the video Peter Rowe did a few years ago and he was talking about how when people have orthostatic dysautonomia it can cause a surge in norepinephrine which will cause the tachycardia in POTS, or epinephrine, which leads to the drops in blood pressure seen in NMH. Some patients can have both! Epinephrine is a vasodilator and it can cause fainting. I wonder if that is what is happening to you? Maybe clonidine might help? So sorry. That sounds dreadful. It is really hard to keep one's spirits up in these acute situations. I really hope you find a treatment plan which is helpful.

That sounds very similar to the migraine auras I get.

Hi! I'm fortunate to have a supportive partner, but, even he has his limits and days when he just zones out and needs to be in another room from me. I had a caregiver experience about five years ago and it really opened my eyes to what that side of the equation was like. So, when I get angry or frustrated at my husband for not being there for me or for not putting the groceries away when I clearly can't get out of bed or forgetting to get the mail again, I stop and think for a minute that he's going through this too and he's lost a big chunk of me to illness, and he has to cope with that. It's very frightening, lonely, and exhausting for partners of sick people. Taking care of other people can be a health risk in and of itself. Every sick person deserves to be believed, supported, and loved. But, I think sometimes the reactions from partners are from feelings of helplessness and fear. Sometimes they don't believe you because they don't want it to be true. (And, sometimes they're just being ******.)

I'm newly diagnosed too, and your symptom set sounds very similar to mine. I have tinnitus, visual snow, migraines/dizziness and chest pressure and the breathing-in pain, too. I still have all of these things, though florinef has helped with some of the chest pain and I'm on a beta blocker to control the tachycardia. I also have pretty severe ME/CFS. I have an appointment to talk to my primary care about getting a thorough cardiac work up, and after that hopefully a phone consult with a dysautonomia specialist. I'll be interested to see what others say.

I have chronic fatigue syndrome, and exercise has always caused a significant flare up of flu like symptoms - fever, sore throat, lymph nodes, flu aches, sheer and utter exhaustion. I'm a very severe patient at this point in time and struggle to get around my house. So when I first learned I had POTS, too, and read that exercise is a good treatment I felt pretty hopeless. Still, I started researching exercising recommendations for CFS. (Smaller, for now, studies point that there are problems with oxygen extraction, and muscle abnormalities at the cellular level as researchers try to understand why ability to exercise is so badly affected.) A lot of people can't tolerate graded exercise so the suggestion is to just start with whatever feels OK, and then keep careful notes the next day or two and see if there are any symptoms. If not, exercise at that level every other day, adding more very carefully. If not, cut back and try again. I bought a set of floor pedals and do that lying flat. For someone who used to love doing ten miles hikes, it's embarrassing how little I can do. But, I have to try. After experimentation I learned I can do 30 seconds of pedals, 3 times a week. I've been able to sustain this for two weeks, and I'm moving (carefully) up to 40 seconds. Alternately, I can do about three minutes of walking (about 150-200 steps.) I'm putting this here because there is an overlap between CFS and POTS, and maybe another patient might read this and feel, like me, there is no such thing as too little. (Maybe the POTS specialists would feel that is too little, but I'm not well enough to see them, ha.)

Thanks! I appreciate it. I don't really get short of breath much so I didn't use that search term. Looks like I missed stuff.

I think #2 is livedo reticularis. I get it too, and it goes away when I lie down. My doctor says it is a sign of vascular insufficiency and common in his patients with osthostatic intolerance.

Hi, thanks for the replies. I'm glad it's not just me and that POTS can cause these symptoms. I am definitely seeking a work up, though, just in case. Katie, I did a search but I must not have gone back far enough! Most of what I saw was chest pain in conjunction with actue events. Andy, that's an interesting theory. I know that I am stiff and sore all over when I've been standing or sitting for a while, maybe there is a lack of circulation?

That's so interesting to read that. I had new onset of daily migraines about six months before POTS onset. Like, never had a migraine in my life, suddenly BOOM crazy migraines with all sorts of weird migrainous neurological symptoms. When I was reading what happened to you in the car in sounded like a complex migraine aura (or a stroke, they can be very similar). But, from what others have wrote it was probably low blood sugar. Hope you are feeling better.

I am newly diagnosed, and this started in late November. I caught a chest cold and my asthma flared up, and my chest felt horrible and tight. And, during that time I got POTS, somehow. Now the cold/asthma is long gone but I still get pressure in my chest. I've been to my primary care three times, had a normal EKG, and he is unconcerned but I think I need a more thorough work up just in case. I just made an appointment to talk to him about a cardiology referral. I don't see many people talking about this, but, it seems to be mentioned a lot in the literature and for me it is my scariest symptom. My chest tightens and I feel pressure when I stand up, when I lie down for a little bit (then it gets better), on exertion, and sometimes after meals. It's diffuse, and hurts more when I breathe in. Sometimes it almost feels respiratory though I never get winded. Sometimes it shoots up to my shoulders and down my arms, and sometimes my back hurts too. It's improved a bit since I've been put on a beta blocker and florinef. I was just wondering if other people experience this, what type of work ups you've had and how you cope?

When I shower the blood pools in my feet and they get really red. So, I wear rubber shoes in the shower and walk in place every so often to keep things circulating. It's probably not super safe but I have a grab bar just in case. Also, at the end of the shower I put the water on cold on my feet for about 20 seconds. That helps. Then after you get out walk around a little.

Having trouble with stairs was also one of my first symptoms. Winded, chest pressure, crazy pulse for minutes afterward. But, I need to be able to go up and down them so I started trying to condition myself with just two steps a day and added a few more as I could, and now I can do a whole flight. It's not comfortable and I have to go slow but I don't get winded anymore. I have no idea if it's bad for me.

Mine was similar to everyone's posted. I was usually 75 or 80 lying down and up to 130 standing, and if I stayed on my feet washing dishes or brushing my teeth it would creep up to the 150s. Strangely, if I was walking around it would go down a little bit, I don't know why. I am on bisoprolol. Because I have asthma they weren't sure I could take a beta blocker but apparently that one is the most cardioselective. It's in the 60s and 70s lying down now and in the 90s standing and usually caps out around 110 if I climb stairs.

Mine developed after years of ME/CFS. Otherstatic intolerance and other autonomic nervous system problems are common in ME/CFS such as insomnia, bowel issues, POTS, orthostatic hypotension.

I too had a rapid weight loss of about 7 pounds around the time I developed POTS symptoms, from loss of appetite. I'm so sorry that your daughter is having to cope with this. For me it was a little easier to eat at night, so I would drink try to drink calories during the day, protein smoothies or milk or whatever (ensure is pretty gross but I drank that sometimes) and then eat a couple of meals or a meal and a snack later when the idea of eating wasn't so sickening. I tried not to worry about what I was eating, just getting the calories in. Thankfully, for me, my appetite returned and I've been able to put the weight back on. I hope the same happens for your daughter. As a mom it must be tough for you to see your daughter struggle so my thoughts are with both of you!

I'm sorry you have WPW and POTS, and that the medication for one is contraindicated for the other. I have no idea if there is a connection. I had an EKG last summer that had an abnormal interval that is found in WPW but lacking the other element of it. It was repeated and normal. Nobody seemed concerned or even requested follow up! (I got POTS about three months later.) Maybe it can develop in adulthood? Also, not sure about how ablations affect POTS. Maybe the best type of physician to try to seek out would be an electrophysiologist? Best of luck to you.

Thanks so much for the kind words of support to everyone! @Katybug, I did get checked for autoimmune many times over the years and am always normal. My doctor said the rash can be related to orthostatic intolerance as well as many other causes and it's nothing to worry about (except it is pretty hideous!) It only happens when I am standing or sitting. (I have a little peddle-er! I used to be able to do it for a few mins, which is pretty good for CFS, but my energy threshold is so low now that it's not something I can do. One of the facets of CFS is that you can't really "work up" with activity, you can just do what you do.) Glad your is helping with your circulation.

Hi, My name is Robin. I was diagnosed with POTS two months ago. I have chronic fatigue syndrome, and unfortunately at this point in my illness has become very severe and I have to spend a lot of time in bed. I had heard of POTS because orthostatic intolerance and other symptoms of dysautonomia are very common in CFS. In fact, I was screened for POTS/NMH when I saw a CFS specialist about 10 years ago - she gave me what she called a "poor man's tilt table test" and at the time I was fine. Over the last few months I have had a lot of new symptoms. First onset of complex migraines, later followed by a general worsening on my CFS symptoms, episodes of sweating, feeling warm, poor appetite, and pressure in my chest and arms. I had an EKG and had my lady hormones and thyroid tested (I'm 39) and everything was OK. One evening I felt a little winded and noticed my pulse racing when I was doing the dishes and I can't remember exactly what it was but it was in the 140s. On a hunch I lay down and it dropped immediately to the 90s, and then fell to 76 over a couple of minutes. It's very difficult for me to get dressed and go out of the house, and it makes me feel horrible for days after, so I don't go to the doctor unless it's pretty serious. I went, and my doctor checked my pulse and blood pressure standing and lying down and diagnosed me with POTS. He didn't seem to know that much about it and is trying to treat me himself. (He knows how hard it is for me to get around and he doesn't know anyone that treats it in my city.) He put me on a beta blocker which has controlled the runaway heart beat and started my first dose of florinef, 0.05, today, but I'm still having symptoms. I still get the pressure in my chest, neck and arms after a few minutes of sitting at the table or my desk. My toes turn pink, then red, then purple. My doctor noticed that I get a rash called livedo reticularis on my legs and arms when I'm sitting. I strangely don't get dizzy! I've been trying to read about POTS and do home care as much as I can. I've been increasing salt, drinking fluids, wearing compression stockings when I'm out of bed. Coffee seems to help. I try to move around as much as I can and stand up frequently. I've been wearing a wrist pedometer and trying to meet a (very) modest daily goal of walking. I have been exercise intolerant from CFS for years and it's very devastating to learn that is one of the best treatments. In fact I'm very emotionally overwhelmed right now. I've had to deal with CFS for almost 20 years and now I have another debilitating syndrome that people don't understand and/or haven't heard of. It's just me and my husband and I don't have much in the way of social support; I haven't been able to get out in the community for years and don't have friends here anymore. I just can't believe this is happening. I would love to go to one of the dysautonomia clinics and get some testing, get a good consultation from an expert, do gentle exercises, but I wouldn't be able to handle it, physically. So I'm making do with internet research and my enthusiastic but inexperienced primary care. So, I've been very thankful to read some of the forum posts here and see what has helped others.