summer

It's so hard for other people to understand how disabling this is. I'm feeling good right now because I can do a little housework, then sit or lie down for a while, then do a bit more, then take another break, etc. I can even go out to the mall and shop for an hour or so, but when I get home, I feel foggy, and need to rest. This is such an improvement compared to where I was a year ago! Relatively, I do feel good! Haven't felt this good in well over a year. But when I tell others I feel better, they think I mean "back to normal" better. I'm not a complainer, and tend not to go into a lot of details about the times I feel 'not so good', I don't know how to make people understand without feeling like I'm whinning. I guess, really, I know I can't go back right now. I'm just not sure when or if the time will come (or is it here now?) that I have to say, "That's it. I am not able to return to my position - ever." I suppose, like many others have experienced, I'm going to have to adjust to my new limitations - and life will go on. It will just be different.

I also had a lot of nausea when I first got sick, and lost weight. Now, 16 months later, it comes and goes with my other symptoms, and when I am feeling better, I am not nauseated, and my appetite is normal. But I would say that at first, it was one of my most bothersome symptoms.

Hi Heather, Just wanted to tell you that I'm so sorry to hear about your loss. I'm sure it's a really difficult time for you. I really don't know of any POTS connection to miscarriage so I can't offer any info. I did want to let you know that my thoughts and prayers are with you also, as others have mentioned. Take care. Summer

I have been off work for about 16 months now. Finally, after about 13 months of being really sick, I was diagnosed with POTS by an ANS specialist, and started on a combination of meds, dietary and lifestyle changes and am really improving. I finally feel like doing a few things again, but I still need to pace myself, and get plenty of rest. Of course, when I meet people I know, they all want to know how I am doing. I have been so happy to be able to tell them I'm feeling better after feeling rotten for so long. Everyone is now beginning to ask if I'll be going back to work soon (including my supervisor). I work as an RN and my job requires me to be standing, walking, bending, reaching, pushing, pulling, and lifting for about 6.5 hours of my 8 hour shift. I am also required to do rotating shifts, days, evenings and nights. I'm improving, but I really think my work which is so physically (and mentally) demanding, will make me sick again. My employer is suggesting I start an ease back program so that I can gradually get back into it. Another concern I have is my brain fog. How can I administer medications all day (or all night) when I can't concentrate? Of course, this is much worse when I'm tired, or when I have been on my feet for a while, or if I have been thinking a lot. Now that I'm improving, everyone naturally thinks the next step is to get back to work. I'm beginning to feel some pressure. I'm not even sure that my GP, who is following me, can understand that although I'm improved, I don't think I can work as a nurse right now (or maybe ever). It's hard enough for me to admit that to myself, let alone try to explain it to others. My question is this: Has anyone been able to return to a physically demanding job, including shift work? Is it even realistic for me to think I might ever return to this type of work?

This is news to me! I've been an RN for 20 years. The normal heart rate range for adults is 60 - 100 bpm. Not that you can't be very healthy with a lower rate, but it's not what's expected for most people. Why does he want to slow your heart rate from the 70's?

I drink a glass of V8 every morning as soon as I get up. In fact, I add a quarter teaspoon of table salt to it to make about a full gram of sodium chloride. My doctor told me to take 1 gram salt tablets, but I was not able to keep them down (or anything else that was in my stomach before them). The V8 with salt works great! And I've actually gotten to like it. Also I still feel thirsty after I drink it, so I am able to take in more water during those first hours of the morning when I really need it.

Sorry you are feeling so terrible right now. After a year and a half of being sick most of the time, I am finally beginning to have more "good" days than bad. Although, even my good days are not like my pre-pots days. I have had a lot of difficulty with excercise because I feel so much worse immediately following (and for hours after). The doctor who diagnosed me told me that excercise was the most important thing I could do to help myself. He said that I should begin with whatever small amount I could do, short of making myself sick (for example 5-10 minutes on a tread mill at 1 mile per hour, zero incline) and that I should do the SAME amount everyday. He said it was important that on my bad days I do no less, and on my good days I do no more. Very gradually, I am to increase the amount until I am exercising 30 minutes per day, but he said this could take months (or even a year). He said one of the biggest problems his patients have is not overdoing it when they feel better. I can relate as I'm sure many here can. On the good days, it just feels so good to be closer to normal that I just want to do normal things and not hold back! But when I do, I always pay for it. So I'm going to try it his way for a while and see if it helps. Hope you feel better soon! Summer

I guess I'm too late to wish you happy birthday, but I do hope the year ahead holds many wonderful things for you. Thanks for all your words of encouragement on this forum. It means a lot to those of us who are new to all this to hear the experiences of those of you who have gone through it all before us. Summer

Hi Carly, When my doctor first suspected POTS, he started me on a BB but I was not able to tolerate it because it dropped my already low BP. After I was finally diagnosed by an ANS specialist, he started me first on Florinef, which increased my BP, and after that, he added a low dose BB to manage my heart rate. The combonation was key for me. The BB alone only made me feel worse. But together, the meds are really helping me feel much better. Honestly, if I could choose either to take BB or Florinef alone, and have relief of my symptoms, I would take the BB. BBs have been around for many years, and I believe the long term effects have been shown to be minimal (especially at the very small doses that we take). I am much more concerned about the side effects of Florinef. Actually, I believe I am more prone to upper respiratory infections since I have been on it and also seem to have a hard time to shake any kind of infection. If I could do without Florinef, I would, but I seem to need the combonation for now. Summer

This is also interesting to me. My GP has heard a moderately loud murmur off and on, and originally, he was sure I had MVP. He sent me for an echo, but no abnormalities were found. He was quite surprised that nothing showed up. So it's actually possible to have MVP that might not always show up on an echo? Although I have no diagnosis of hypermobility, I do have flexible joints, mild scoliosis and some mild sternum and rib "differences". I now have a diagnosis of POTS. Do you think these are all related? How interesting.

Hi Morgan, There is a neurologic movement disorder called "essential tremor" which is genetic. It is considered benign although the shaking can be signifigantly disabling. You'll find lots of info if you google it. Summer

Hi, I can also relate to where you are right now. I've just finally been diagnosed after many months of looking for answers. I know when I began talking to my doctor about this, he seemed resistant, because he had not heard of it before. It was not that I was asking for someone to diagnose me with pots, I would have been just as happy if it had been ruled out. I just wanted it to be considered seriously, and I wanted to be tested with a tilt table test. After a year of persistance, and seeing a number of specialists who dismissed me, I finally requested to be referred to an autonomic nervous system specialist. My GP agreed and sent me and WHAT DO YOU KNOW! I HAVE POTS!!! I did one thing one day that made my doctor take me more seriously. He was always checking my heart rate in the office sitting and standing (immediately), which of course showed nothing. I told him that this usually happened after standing for a few minutes (of course no doctor has a few minutes to wait for a patient to become tachycardic, or drop their BP, or faint!). So the next time I visited the office his receptionist showed me into the exam room. I did not sit down. I stood for 6 minutes until he arrived. By this time I was shaking, short of breath, my heart rate was 156 and my legs were bluish-red up to above my knees (yes, I rolled up my pant legs to show him). He quickly took my arm and put me in the chair. Since that day he has been very supportive and has really helped me to get to the right people for testing and proper diagnosis. It truely is a relief to get a diagnosis and validation of all youv'e been through. It can be very difficuly to be persistant in the face of doctors who are supposed to know what they are doing (and can be very arrogant about it). But you know your body best. If you truely believe you may have pots, continue to push for testing. Even if testing rules it out, you are closer to finding out what is really happening to you. All the best to you. Summer

Thanks everyone, I am confident that I'm only dealing with costochondritis here and that it is not something more serious. I have been thoroughly checked out. I guess nsaids are the way to go. I was just hoping eventually it would clear up, but maybe I'll always have it. Morgan, I used to get pleurisy often but haven't had it for a few years. Yes, it was like a knife! Hope yours goes away and stays away too. Obviously, your cardio has never had it. Jump, that's interesting about the shooting pains, and dehydration. I have actually been doing a better job of staying hydrated lately, and I think possibly I'm not feeling them as often. I wonder how that works. Summer

Thanks Flop and Joe. I guess I'll just eat bannanas for now unless my blood work indicates I need more. I'm only starting on a low dose of Florinef. Joe, I can see why your doctor is watching your potassium closely, since you've had problems in the past. The V8 fusion is a good idea. Summer

Flop, what is the difference between the regular salt tablets and "slow sodium"? I am also just ready to begin taking salt tablets and wonder if there is any benefit to taking "slow sodium" instead of NaCl tablets. Do you need to take them more than once a day? Thanks. Summer

That really sounds fun! What a great summer you are going to have! Hope you get lots of nice weather to enjoy it.

It's always a tough decision for me to take the elevator or the stairs because I find both will "set me off". If it's a good day and I only have to go one flight, I will usually take the stairs even though it is difficult. I got stuck in an elevator once when I was a teenager, and I guess I never got over it. I also seem to get motion sickness on elevators. Escalators are not much better. They make me dizzy.

Sorry, one more question....How often do you get your potassium level checked while taking florinef?

A few questions for those of you taking florinef - do you also take a potassium supplement? Is there a certain dose were this becomes neccessary? Do you need to take a potassium supplement if you are on a low dose of florinef?

Jump, My doctor also seemed to think my reaction to the SNRI was not surprising with my new diagnosis. I also have an increase in BP on standing, but then it seems to fall gradually over 10-20 minutes. Just wondering, did POTS come on suddenly for you, or was it a more gradual onset? Summer

A thorough cardiac workup was the first thing my doctor did too. I found it scary at first, but after all this time, it's just painful. I'll try the advil gelcaps. I do wonder sometimes how I will ever know if there is really something cardiac going on. With so many symptoms happening all the time, we sort of start to ignore them!! Maybe that's not good.

Just wondering if others experience chest pain often. I have had this most of the time for 16 months (since I got sick). Costochondritis was the first diagnosis I was given, before my doctor realized that so much more was going on. I was told that it should clear up over a few months. It has never gone away. Most of the time it's like a tenderness over my sternum and ribs. When it gets bad it sends shooting pains through my chest. Do any of you experience this almost all the time? Does it ever go away? I have been cleared of any cardiac problems.

Hi Mary! So glad to hear you have found a good clinic closer to you. Traveling really does add stress. I hope your experience there is a good one. I may not be the best one to try to answer your question as I'm new to all this (so anyone else, please feel free to correct me, or add to this). "Hyperadrenergic" refers to an overactivation of the sympathetic nervous system - this is basically your "fight or flight system". Hyperadrenergic symptoms may include tremor, anxiety, and migraine headaches and sometimes orthostatic hypertension. "Hyperadrenergic POTS" is a less common form of POTS compared to neuropathic POTS. A hyperadrenergic state can be characteristic of POTS in general, regardless of the type. There is lots of info on the net about both if you do a search. Hope this helps.

Thanks for your response, Melissa. I'm sure you are right and at the present time, there are probably not answers to all of my questions. I've been doing some reading, and if I'm understanding right, it sounds like the hyperadrenergic state is common to all types of pots, regardless of whether or not it is "central hyperadrenergic pots" so being hyperadrenergic does not neccessarily mean you have "hyperadrenergic pots" - does that sound right? It is confusing, but interesting as well - I have a lot to learn.

Thanks Flop .....and yes, if anyone can tell me how to get to those posts I'd appreciate it.