bjt22

1. Do you seem to pool or have you been told you pool in your hands and feet, stomach or everywhere? Yes...I pool EVERYWHERE....literally everywhere. 2. Do you suffer from cold feet and hands similar to raynauds syndrome? No. 3. Do nurses have trouble finding a vein when trying to needle you? No. The opposite. My veins are practically lying outside my skin. 4. Is anxiety or a hyperadrenergic presentation one of your problems with POTS? No anxiety. Again, almost the opposite. Things that should scare me often don't. It could be said that I have had a "hyperadrenergic presentation" based on the fact that without meds, my heart rate will go extremely high, both resting and standing, and my blood pressure can spike very high as well. 5. are your symptoms worse in the mornings? Usually. 6. Do your symptoms wax and wane or are they constant? Always there, but there's always variation. Nothing is completely static. 7. Was the onset of your POTS abrupt, sudden or mild then sudden? mild, then sudden, I think. As to the visual problems....you might also want to ask who has had problems with migraine. And yes...I get all the above visual disturbances.

It's hard for anyone who is relatively healthy and "normal" to understand what dealing with any debilitating illness is like. A few years ago, someone invented some kind of contraption that would demonstrate to doctors what it felt like to have heart failure. Apparently, this was considered a good thing because so many doctors, many of them cardiologists, just couldn't grasp what it was like to live with such a disease on a daily basis. Since our symptoms are so similar, I wouldn't mind having one of those contraptions myself....ofcourse, I'd have to take someone along with me to doctors' appointments to tote it around!

Geez. Sounds like they all watch too much Dr. Phil. Somewhere down the line, the word went out that being chronically ill can be, well, depressing. Since then, I'm sure there's scads are seemingly well meaning medical people out there who have read a newspaper articl on the topic and become convinced they can explain away all they don't understand by assuming the chronically ill person is just "depressed" or "anxious". I'm not touchy-feely. If I want someone asking about my mood, I'll call my mother or a friend. Guess maybe I'm politically incorrect on this one, but you know, I just don't care for anyone making assumptions about my life when they know or understand little about it. See, I read those same newspaper articles, and if I really thought that my problem was stemming from something other than the physical causes that are documented, I would say so.

I was diagnosed soon after my last delivery as well. This was 14 years ago. I had had symptoms going back for awhile. In fact, during the previous pregnancy, I had had a lot of problems including fluid on my lungs the entire time as well as horrible chronic migraines and very labile blood pressures and heart rates. A nurse midwife turned me over to an OB because she was sure I had something significant going on with my cardiovascular system. During the last pregnancy, the blood pressure and heart rate problems returned. It all went haywire about a month before I delivered when I caught an influenza virus. I did not recover well. The certified nurse midwife I was seeing was again sure I had some kind of cardiac thing going on. My primary care physician thought I had developed cardiomyopathy. I was sent to a specialist and diagnosed with little testing at than the holter monitor reading that prompted my PCP to send me on and then the tilt table test. Since I was glad to hear that I wasn't suffering from severe heart damage, I chose to accept the alternate diagnosis. Over the years, I've questioned the wisdom of that decision. Maybe it wasn't one or the other, necessarily. Maybe there was subtle damage that lead to my autonomic problems coming into the forefront. I still have strange things going on, and to this day, I haven't really pursued any other diagnosis. I've had a stress test, which I failed. I still have fluid in my lungs that no one can really quite explain. This is not typical for POTS/dysautonomia patients. On the other hand, nothing is really standing out big time...and I'm being treated with medication in a manner consistent with patients who do indeed have some kind of heart damage. How much does it really matter in the long run? I'm not sure there would be more that we could actually DO at this time. It's not something that I've found any ready answers for in my researching, and at the risk of sounding pompous, if I can't figure it out, why would most medical doctors be able to? I've certainly got the edge on motivation to do so. As to will you do better? Well, that's entirely possible. After about a year after my last delivery, most symptoms have reduced to a livable level. They were still there, but I was able to function fairly normally. Alas, this reprieve was not long lasting. After a couple of years, symptoms started getting worse again, and following a bout with a cold, they came back full force.

I basically don't sweat at all. But you want to hear something really odd? I often FEEL as if I was sweating or that I should sweat when nothing is there.

For the past 25 years, I've had doctors tell me, on and off, that I have a loud "click murmur". I have a mild prolapse with regurgitation.

I've had just plain old oxygen tanks at home. To be honest, I can't say that they helped a whole heck of a lot. I was prescribed oxygen for cluster headaches, and while I could sometimes get some momentary relief after using very high flow amounts, I often tended to rebound back when I went back on room air. Since there's limits as to how long one should be on high flow oxygen, this wasn't particularly helpful. It was a last stop-gap measure when the pain made me feel almost suicidal. I tried it for chest pain since I often have angina-like pain along with cluster headaches. The oxygen provided a little relief, but really, it was no answer to long term problems.

I have a room air conditioner in addition to my central air, too. And a large fan aimed right towards my bed. Needless to say, I'm incredibly heat intolerant. A couple of years ago, our central air gave up the ghost. It took us about a week to get a new unit. Ofcourse, as is always the case, when the air conditioning goes, a heat wave occurs. Even with my room air conditioning, I honestly thought I was going to die. By the end of that week, I was completely bedridden, holding onto so much fluid my lungs were filling up, using home oxygen and heading into a cluster headache cycle. I honestly believe I'm one of those people who would die in a heat wave without air conditioning. Ofcourse, as soon as the new air conditioning unit was installed, the heat wave broke. So what do I do? I don't go out in summer. If I do, I try to confine it to evenings/night-time. My family calls me "The Vampire". I refer to myself as being rather "bat-like". Last summer, we did go to Canada for a week....it was amazing! I could venture outside during day-light hours.

A few years back, I read quite a few articles describing a contraption that had been made that allowed doctors and other medical professionals to understand what living with congestive heart failure felt like. Apparently, there was a notable lack in their understanding or ability to relate to the impact it had on patients' lives. Ofcourse, many of the doctors interviewed for these articles tried to pass the blame onto their patients....they would say things like "this helps me understand because my patients don't know how to describe their symptoms". I can almost bet their patients did everything they could to describe their symptoms yet got the same blank stares we're used to getting from family, friends, medical professionals, etc. To be fair, I suppose it is really difficult to appreciate the impact that cardiovascular impairment can have on daily life. I often have a hard time describing it. I fall back on pat phrases such as "I feel like something the cat drug in" or " I feel like I've been hit by a mack truck". Not very descriptive, I know.

Too funny! yeah exactly! A concerned friend asked me if i was up to going to a concert midweek as it might make me feel worse the next day. I told him that I feel the same whether i get 4 hours or 16 hours sleep so no biggie... Sometimes its almost like my body needs something to do to stop giving me POTS - when ive got a cold it goes away, when im tired it seems to improve, very odd... And the alcohol? Well, it probably doesn't help, and yes, it might actually hurt, but you know, every once in awhile, I don't mind having a couple of drinks and just not CARING that I feel bad! I think for me, it boils down to choice. If I choose to do something and it makes me feel worse, well, so be it. I accept the consequences of my choice. I'm not so accepting of being put into situations in which I have little if any choice.

We live in an ever increasingly rude society. These days, I'm amazed when I go anywhere on any type of business and receive courteous treatment. Sad, isn't it?

This happened to me a few years ago when I got up on a Thanksgiving morning to go to the bathroom, blacked/greyed-out and broke my elbow. I knew I broke it, but went back to bed and slept a few hours before getting up and going to the ER. When I went, the doctor on call kept apologizing for not feeling comfortable giving me a prescription for strong pain meds. I was also in the midst of a major cluster headache cycle and just about every other symptom I've had was really acting up. To this day, I barely remember anything other than the minor aggravation from having that broken elbow. I didn't notice the pain at all.

This whole discussion brings to mind the discussions we were having last week concerning older, or well, "not as young" people dealing with POTS/autonomic dysfunction. There's a lot of things that can be tolerated by a young body that would be difficult for those of us in older bodies. There's a lot that a youngish-person can get away with on a short term basis. What about when it's not short term and we are getting older? I wonder how much POTS/autonomic dysfunction advice was first given based on the assumption that the person receiving the advice would be quite young, otherwise healthy and suffering from a short term problem?

This sounds very similar to how it is for me. I have a low tolerance overall for alcohol, but when I'm feeling bad, a drink can definitely help. In fact, a drink can help rid me of a migraine or angina pain. I think that in addition to the vasodilatory effect, we should also remember that alcohol increases dopamine transmission. We could be getting a small double boost, if you will, from small amounts. As to how I feel the next day? I wake up every morning feeling as if I had a hangover whether I've had a drink the previous evening or not.

Ramakentesh, I can give you a possibility that I think could explain some of what you are asking. Let's accept that we have damage throughout the autonomic nervous system. It's a spotty damage...a little here, more there, and a bit more scattered in between. If we accept this, we can understand how function in many different systems would be effected. Now, let's assume that our bodies do what they always do, and try to compensate. There's a variety of mechanisms that would allow them to attempt to do so. We live with the effects every day. Don't forget, however, that the damage is not complete...it's most likely spotty. Those nerves that are still somewhat functional are probably getting massive amounts of hormonal and neural transmissions as our bodies signal to put out larger than normal amounts of these in an attempt to increase function. Let's go a step further...maybe we're not even capable of producing consistent amounts of these substances from day to day. Maybe most days, this is the case. Then on the unfortunate day that we put out normal amounts, what must that do to the still fairly normal parts of our nervous systems? What I'm describing could be termed a denervation hypersensitivity, and it explains a lot of the real mysteries that we seem to encounter. It explains the changing of our symptoms from day to day as well as the back and forth of the severity. Now, add onto this the fact that all of this might actually be leading to more damage on a regular basis. Everytime this happens, the whole compensation effort starts up again. As to nitric oxide, well, I think the production of every natural substance in our bodies has been convulated due to dealing with the dysfunction. The NO connection could certainly explain one aspect, but I think we're in chicken-or-the-egg territory. It's very difficult to understand which came first.

I've found it to be rather opposite....smokers are over represented in the largish group of people with POTS/NCS that I've known. I've always felt that we were self medicating.

I tried Kava Kava about 10 or 12 years ago. It was a period in time in which I'd come off prescription meds but was still experiencing mild to moderate symptoms. It did not agree with me at all. Instead of a "calming" effect, it did the opposite.

There are some studies floating around out there that describe migraine as a sympathetic hypofunction. A transient autonomic failure. When I'm in migraine or cluster mode, they occur when my blood pressure and/or heart rate has dropped quickly. In fact, years and years ago, that was one of my first symptoms. I tried to explain that to doctors, but they looked at me as if I were speaking a different language! My blood pressure drops ALL the time. I guess my question is for those like us, why does this sometimes lead to migraine and sometimes not? I suppose inflammatory response could have a lot to do with it. However, I walk around with what could be considered "aura" pretty much all the time.

I'm always thirsty. In my case, it's at least partly explained by the lack of saliva production. This makes my mouth extremely dry ALL the time. So dry that without having constant access to drinks, I'm nauseous to the point of vomiting. I also just CRAVE fluids, too. And all of this is related to dysautonomia.

I have had migraine and cluster headaches. The frequency and intensity of both of these has diminished since I've been on all the medications to treat my other problems. I take a beta blocker and use Catapres. However, when I started having massive fluid retention a few years ago, I found myself going right back into cluster headache mode. When I added a lasix to my daily drug regimen, these again diminished. A couple of years later, I did, unfortunately, find myself in the midst of a cluster headache cycle. Oxygen did help. It was no cure-all, but sometimes if I used it when I felt the first pings of the headache coming on, I could avoid having a full blown episode. If I waited too long to use it, however, it only helped while I was using it as when I would quit, I'd often go right back into headache. Kind of a rebound effect. I can't use triptans. I have found exedrin to be about as beneficial as any prescribed short term med. My concern with it's use, however, comes from having months' long cluster cycles. Not crazy about taking above the recommended dosages of this drug daily for several months at a time. When I was in my last cluster cycle, Lyrica was recommended...I didn't try, however, as by that time the cycle was winding down.

Very interesting. I'm one who pools everywhere....arms, legs, abdomen, etc. However, at the same time, I have patchy vaso-constriction going on in various areas. For me, it comes down to trying to keep things on as even a keel as possible. This usually means I'm trying to keep those constrictive spasms from occurring. I've not had any luck with the vasodilation. Any attempt to correct it causes vasoconstriction in areas I don't want it. I just have to live with the effects. I will confess to being a smoker, and I think it does help. As does caffeine. These are very mild vasoconstricters, and when one has used these for a long, long period of time, they don't cause problems. However, I could see how one might encounter problems if one had not used these substances before. Very interesting about the migraines. I do happen to think that migraine is an autonomic dysfunction in and of itself, but the mechanisms are very unclear. Incidentally, I've described myself as feeling as if I "have an entire body migraine all the time".

Well, I'm not running to the medicine cabinet and throwing out my beta blocker. Does your beta blocker do what you want it to do? That would be the question. Mine keeps my heart rate below 160 bpm and keeps my blood pressure from spiking. It also lessens a lot of the chest pain I have and it seems to make migraines less intense. Are beta blockers the wonder drugs some have made them out to be in regards to preventing everything that might ail one? Ofcourse not. For me, though, I have to think that lessening the work load on my heart and providing me with a little symptom relief is certainly worth any small risk. I will state that I DO have high cholesterol and I'm a borderline diabetic. Probably has nothing to do with with my taking a beta blocker as these seem to be problems that run in my family.

I have had every kind of headache imaginable. I have migraine that could fit your symptoms, and I also have cluster headaches. For me, I know that these are part and parcel of my autonomic dysfunction/failure/neuropathy. It doesn't mean that they aren't "migraine" or "cluster" headaches...I think it means that in some, if not most, cases, migraine and cluster are forms of autonomic dysfunction. In fact, the literature often describes them as such.

My grandmother was treated for a variety of ailments. This was a woman who was born at the turn of the century into a large farm family. She also spoke of being "sickly". Her brothers and sisters were jealous because she was not made to go outside and work. She fainted when she did so, so she was allowed to just stay indoors and help her mother. She had only one child, my father. She never had another because, in her words, she "couldn't get well after having him for a very long time". Over the years, she was diagnosed with kidney disease, thyroid disease, heart disease, diabetes, hypertension, arthritis and a variety of female ailments. Finally, while having surgery on her thyroid, it was discovered that her heart would speed up and then slow down. She was given a pacemaker, but no one put this together with her fainting her entire life. She was diagnosed with heart failure in her 50's, but again, I'm not sure what that MEANT. My father also had a tendency to "spells". My grandmother often talked of the time that they were walking someplace or other when he was a small child and he passed out cold and she thought he was dead. In his thirties, he had some kind of "spell" that lasted for a year. He had horrific chest pain, along with weakness and other symptoms. No one ever figured out what was wrong with him at that time. He did recover, but still had "spells" and went on to develop Parkinsons, or at least something that has been diagnosed as Parkinsons.

My dad had similar weird things going on with him and it took him literally 30 years to die. He was weak, didn't like walking, had palpitations from he knew not what, had no stamina, excessive nausea and no appetite. He eventually succumbed to ???? from lack of eating. He had stopped eating all together because of constipation, nausea, (probably had gastroparesis), and died because he wasted away and all body systems had stopped. Malnutrition was a contributing factor. Nobody could get him to eat. I'm scared to death that I have what he has. It takes a long time to die that way. That's for sure. And they really had no idea what was going on with him. I honestly do not think they totally understand what is going on with me either. They call it POTS, but what does that mean and how has it helped my day to day life to have that diagnosis other than I now have a label for it? This has occurred to me. My father is 77. He was diagnosed with Parkinson's about 5 years ago. Mild at first, but like your father, he had many strange things go on for a very long time, too. I also need to add that his mother, my grandmother, had what I am sure would be diagnosed as POTS today. My father had "spells" all of his life. That's why I never thought it strange that I did, too. I'm thinking that now his Parkinson's diagnosis is not correct or complete. I do think he might have MSA or Lewey Body Dementia, or, quite possibly, there's entities out there that just haven't been articulated at this point. He had some kind of episode back in January that put him in a nursing home. It was not typical Parkinsons. He's also dealt with atrial tachycardias for the past 10 years. To present a positive side to this, however, I have to share that his mother, my grandmother, lived to be 87. While there was no diagnosis of POTS or PAF or autonomic dysfunction, as I said in the previous paragraph, she was a classic case. They treated her for EVERYTHING. I think her receiving this treatment for all of these symptoms, as they arose, probably allowed her to live so long. And...she lived in her own home until the day she died. I'm sure she dealt with a lot of disability that we just simply not understand at the time, but you know, it didn't turn out that badly for her.