summer

From what I read, the criteria for POTS includes the symptoms of dizziness, fatigue, pre-syncope etc. Having a heart rate increase of 30 bpm on standing alone is not POTS. So I would not consider that people with high standing heart rates and no other symptoms have "undiagnosed POTS" or meet the criteria for a POTS diagnosis. A syndrome is a recognized group of symptoms, and in the case of POTS they include all these other symptoms in addition to the hr increase (fatigue, dizziness, presyncope, mental clouding...). POTS is defined (Table 1) as the presence of symptoms of orthostatic intolerance for at least 6 months accompanied by a heart rate increase of at least 30 beats/min within 5-30 minutes of assuming an upright posture. This should occur in the absence of orthostatic hypotension (a fall in blood pressure >20/10 mmHg). The syndrome must occur in the absence of prolonged bed rest, medications that impair autonomic regulation (such as vasodilators, diuretics, antidepressants or anxiolytic agents), or any other chronic debilitating disorders that might cause tachycardia (such as dehydration, anemia or hyperthyroidism). It is important to recognize that this syndrome is typically disabling. Hence, the mere observation of orthostatic tachycardia is not, by itself, sufficient to make the diagnosis of POTS. -Dr. Satish Raj It would make me wonder, however, if those people have the potential to develop POTS. I believe I had POTS in my teens and early twenties. I was able to go to school, and function to a certain degree, but I experienced a lot of fatigue, dizziness, and occassional syncope. I certainly could not keep up with my friends - and went to bed most days after school. When I was a student nurse, my nursing instructors insisted I make an appointment with my doctor because I would often have to leave when we were observing proceedures (standing), and more then once went to the floor in the OR, while wearing a surgical mask. They thought I was pale and thin, and that I should be assessed. When I went for my appointment, the doctor laughed about the whole thing and that my instructors had sent me when I was obviously perfectly healthy. I think that appointment lasted about 30 seconds. Unlike others here, when I became pregnant for the first time, I felt great, and that improvement lasted a number of years, although I was always easily tired and dizzy at times. Twenty years later, I had a huge crash after a viral infection. A year later, I was diagnosed with POTS. My specialist asked about my history and said I probably always had mild POTS - it's not mild anymore. This made sense to me. I also would like to see some data about the long term course for teens with POTS. Maybe the diagnosis has not been recognized long enough yet.

I think this is what happened to me. I believe I could have been diagnosed with POTS in my teens/early twenties. After relapsing to illness more disabling than ever before, I was diagnosed in my 40's. I probably had 20 years of close to normal functioning - although not quite. I also wonder how many people experience this. Summer

Yeah, Erika!! Glad you were able to get where you needed to go! I hope things cool down in Florida. I don't know how you can stand it! Summer

My BP is all over the map - high.... low.... normal... but it is often low, and when I tried a BB alone, it was too low and made me feel worse. When I finally saw the ANS doc he perscribed both a BB and Florinef, and in combination, they really help. I was not able to take either one alone. Summer

Hi Broken Shell, This is a ongoing problem of mine. I often feel light-headed, spacey and foggy as though I am not getting enough blood flow to my brain. My BP is sometimes low, but often not. Even when it is low (90's systolic) my doctors will tell me that it is not low enough to cause this feeling of hypoperfusion. I have really looked into finding an explanation for this because I knew it was not my imagination, and I was NOT anxious when I was experiencing this feeling despite what some tried to tell me. From what I understand, in POTS, the over-stimulation of the sympathetic nervous system causes constriction in the vessels of the brain, so that enough blood can not get to the cells, even though the BP is in a normal range. So the hypoperfusion is very real due to the narrowing of the cerebral blood vessels. This over-stimulation can be caused by anything that stimulates the SNS like standing, mild dehydration, a hot bath, stress, activity. In POTS, our sympathetic nervous system doesn't seem to know when to shut off, like it does in healthy people. Does this make sense? So don't let anybody try to tell you this is not real because your BP is not low enough. As Carinara pointed out, you can feel this way even with a high BP, and truely be experiencing hypoperfusion. Summer

#1. Caffeine helps with my morning symptoms, and occassionally to improve brain fog, but I can't take too much of it. #2. I think in the am it increases my bp which can be pretty low when I first get out of bed. I think the stimulant effect helps with my brain fog occassionally, but I can't over do it or I will become tachycardic and jittery. #3. Cold and bluish, mottled to above my knees definitely.

Hi All, I appreciate all your responses. You've brought up some interesting ideas. Bella, So if my ANA is negative, I don't need to worry about lupus? That's good to know. Thanks. EM, Great suggestion. I didn't think about getting my sun in the morning or later in the day. That makes a lot of sense. Thanks. Rama, I don't think I fit the clinical picture for MG, so I'm not really concerned about that. Also, I'm sure I'm a "constrictor" rather than a "dilator". Flop, -definitely not a heat rash. It's not as fine. It's bumpier, itchier, and only in the area that was exposed to the sun. It has definite borders where my clothes were. It seems to be a little worse today than it was last night. There's some on my arms today that I didn't notice last night. Hopefully it won't last long. Thanks again, Everyone, for your thoughts and ideas. Summer

I also get tenderness and swelling of my parotid glands, and sometimes sore ears too... all going along with the sore throat.

I also have a sore throat to some degree all the time. It gets much worse if I am tired or stressed of if I have done too much. When it is at it's worst, I can also run a low grade fever with it. I have a diagnosis of CFS and sore throat is a symptom, possibly caused by some activation of the immune system all the time?? Mine does not seem to be related to any difficulty with breathing or swallowing. Another thing I notice is that when I really do get a viral infection, my sore throat is "over the top" sore compared to what it used to be with a virus, and it lasts for ever. Takes me a really long time to get over an upper respiratory infection now. summer

Thanks, Everybody, for your replies. mkoven, was it a hive like reaction? This is like a bumpy, itchy rash. I have not had it before the last two summers, only since I was diagnosed with dysautonomia. Babette, I also am very fair complected (always burn, never tan!), and get sunpoisoning easily. I wonder if that's related? Valliali and Bella, Well, lupus has certainly crossed my mind more than once. Infact, early last summer, I had what looked like a butterfly rash on my face after being in the sun. I ignored it and it didn't last long. I have not had it since. I thought since it did not come back, that maybe it was nothing. I also began having this sun rash, although as I said, I do not spend much time in the sun. Then when winter came I developed raynaud's which I know can be related to lupus. At this point, I decided it was time to ask the doc about this. He did an ANA test which was negative - so I guess that rules it out.... does it? Can Lupus be ruled out with one negative test? If not, do you know what other blood work I need. I know I am always either borderline, or slightly anemic. My RH factor is not elevated even though I do have a lot of joint pain. Any suggestions? Lois, I am also very sensitive to cold and develop raynaud's and chillblains. The rash I have now is like little itchy bumps. Thanks again, guys, for taking the time to respond! Summer

I thought I noticed this last summer, but then thought maybe it was a coincidence. I don't spend much time in the sun, and I'm sure I don't need to explain that to all of you... My doctor suggested that if I was in the sun for 15 minutes or so per day, that I might not need vit D supplement in the summer. Certainly, I can not do that on hot days, but today was beautiful and breazy so I went out to sit in the sunshine for a short time (maybe 20 minutes). It felt wonderful! When I came in, I was very fatigued and went to sleep on the couch. Now this evening I notice that I have developed an itchy rash on my upper chest and neck. As I said, I noticed this last summer, but was not sure if it was related to being in the sun or not. Today, it seems pretty obvious. Does anyone else get this, and is it related to POTS? Summer

I'll be praying everything comes out ok. By all means, give yourself a break from the stress if you can! Summer

Congratulations on getting through the TTT and on being able to post here the same day!! I am on .1 mg of Florinef and it is helpful for me, but Julie is right - it will not work without extra salt and fluids. Good luck with it. Hope it gives you some relief of your symptoms. Summer

Hi Erika, I can relate to this too. I have 3 kids. Driving in the summer is very hard for me. I also feel bad about my brainfog where the kids are concerned. My youngest loves to talk. By suppertime, I am so foggy that I have difficulty processing all of the chatter - this is especially true in the warm weather. I feel really guilty about this. My 15 year old also does lots of cooking. It really is hard. Summer

I wake with this too, usually with me it is very early morning, like 5 am or so. I never feel really scared with it, just annoyed and it keeps me from falling back to sleep. I am not sure if it just starts up spontaneously, or if it starts when I am rolling over or moving around in bed. Summer

Thanks, Everyone, for the suggestions. Earth Mother, very well done on the video - thank you! Summer

Thanks, Jennifer. Good article! Summer

Maxine, We can all relate to that frightening feeling of having to be your own doctor and not being qualified for that. I was just thinking this afternoon about how it feels like our doctors can just forget about what we are going through between appointments, but we are there living every minute of it. I can imagine how scared you must be. You have already been through so much. But you are very strong, and you will get through this too. Jennifer's advice is right on. Reading your posts over the months has been a real inspiration to me, as you have navigated your way around so many obstacles, including doctors. You must first find out what you are dealing with. Seek out a good oncologist and go from there. Thinking of you, and praying for you. Summer

Hi Rene, It really is scarey to try something new, but remember, "nothing ventured, nothing gained." It might turn out to be the best med you have tried. It has been for many. Even though clonidine did not turn out to be the med for me, I did not have any really scarey reaction to it. Infact, it made me feel very relaxed and a bit sleepy. I took it for a number of days before deciding my BP was running too low on it, but I was not in any danger, just felt faint when I stood up - nothing new for us. I hope it turns out to be just the thing you need. We are here for you! Let us know how you get along in the morning. I'll be checking to see! Take care, and I will pray for you tonight. Talk to you in the morning:) Summer

A friend of mine has asked me to give him something to read about POTS. He has no medical background and would be swamped by some of the articles we refer to here. Does anyone have any info that they share with friends that explains POTS fairly simply (if that is even possible!!). The fact that someone is asking me is great, so I want to give him something that will really make sense to him and help him understand. I don't want to overwelm him with something written for a physician. Any suggestions? Thanks, Summer

I know what you mean. I was looking for something under my bed last night and thought my head would explode. Ok... I'm going to ask the question that I have been avoiding in my mind for a long time. Is there anyway that this messed up brain blood flow is not putting us at risk for various problems. Hypoperfusion and vasocontriction..... doesn't sound like that would be too good for a person's brain. Any thoughts... or better yet, research? Summer

Hi Jana, So sorry you and your boyfriend are going though this stress. It is so difficult and I can really relate to your feelings of wanting to reciprocate care for him as he has cared for you. I have wonderful parents who have been so helpful and supportive to me while I have been sick. This past winter, they both experienced serious health issues and surgery and I felt totally overwelmed and guilty about not being able to help as much as I wanted to. It is so difficult. We have all learned in our own experience that emotional care and support is just as important as the physical and I'm sure you will be able to provide that for him better than anyone. Perhaps there are other family members who could get the groceries and run errands - but you will be able to relate and empathize and listen. Never diminish that value of that. By the way, a close and much loved relative of mine had surgery for prostate ca 15 years ago and has lived a very healthy life since then. Treatments have improved a lot even since then. You are both in my prayers, Summer

Hi Babette, First of all I wanted to say that I can relate to where you are as far as wondering about your children and POTS. I also have children that I am watching closely because of their ages, and can see signs in one daughter that are frightening familiar to me. I also have a son with a disability and understand the difficulty in knowing how and when to pursue medical testing, which can be tramatic for anyone, but especially for a person who is not able to truely understand the purpose of the testing, and may be frightened by the proceedure. My son is very frightened of medical testing, and in my situation, I avoid this for him unless I feel he will really benefit from it at that time. I tend to agree with Flop. That an official diagnosis might not be the most important thing. Since there are some safe, non-pharmacuetical ways to treat POTS, I would try these for her and see if they seem to help. Just wondering, What signs and symptoms have you noticed in your daughter? Summer

It makes total sense to me, Erika. I also don't feel like sleeping. Infact, I only wish I could fall asleep when I feel like this to pass the time. I just feel weak and like I have to lie around. I have no staminia for activity, but rarely sleep during the day. I also have wondered about this, and at first didn't think of this symptom as "fatigue" because I did not feel sleepy. Summer

This is an interesting question to me. I was actually given both of these diagnosis' by the same doctor on the same day. I have always wondered about it. Yes, the symptoms are very similar if not identical, but, I thought in order to receive a diagnosis of CFS, there could be no other medical or psychological explanation for the symptoms. ....So if POTS explains my symptoms, and is a measurable, objective diagnosis, why would I need a second diagnosis of CFS? Summer