briarrose

Carol Welcome to this great forum and also informative website. Your story is like so many others. People wait for over a decade sometimes for a diagnosis. Many doctors don't like to admit that they don't know so they tell you that it's mental and you need to see a therapist. (Love that one!) NOT I was diagnosed with pots 1 1/2 years ago, started with the tachycardia 11/01, but actually had syncopal episodes starting with my first pregnancy back in 1983. For years I passed off my symptoms as normal. My doctor's wouldn't listen to me, they just kept saying it will pass. I was miserable for over a decade with the worst joint pain that you can imagine. After I was diagnosed with POTS, I went to Ohio to see a doctor who specializes in this illness and he put me on a medication for the pain. It was the first true relief I have had since 1992. I had traveled from Oregon to NY to see rheumatologists. They all wanted to put me on different medications (some with very nasty side effects.) My mother has had NCS for about 10-15 years. As a nurse she used to pass out on the floor walking back and forth between patient rooms and the nursing station. She was diagnosed this year with POTS too. I have had many of the same symptoms as you. Although your the first person that I've come across that has the VT too. I was nervous when I found that one out, mine was only 6 beats. Isn't it funny how doctors actually convince you that you have a mental problem even though you know that it's not the case. They work on you for so long that you actually start believing it. I was recently very pissed at my doctor and I told him so. He turned around and said, "you know, patients with your kind of anger really do need counseling for their chronic illnesses." I said to him, you know, doctors that don't listen to their patients should have the same. I told him that i had a right to be angry with the system, that it was a normal response!! You sound like POTS to me. You know some doctors are comfortable with the poor mans tilt and don't even send you for testing. As far as your dizzy spells and feeling faint. I experience that alot and do the same thing, it's helpful to elevate your legs when your on the floor, so you can get blood flow back to the heart and brain. I sometimes have to crawl to the restroom at home when I'm really sick. I developed anemia. You should ASK them what your hematocrit is, they usually don't tell you even when it's abnormal. (Actually getting a complete copy of your medical records would probably be beneficial. Anyway, it got so bad that they finally put me on epogen and IV iron every week. After 3 weeks of the iron, I felt so much better. Many females lack necessary iron, but doctors won't normally test for it. Mine was nearly non-existant. I was so hypovolemic that it was causing the severe dizziness, ears ringing and syncopal feeling. Compression hose might be beneficial for you. Drink plenty of water, gatorade, I thing V8 has a high sodium content, my doctors actually tell me to put a little extra salt in the gatorade. Everyone is very different here. Some people respond to meds better than others. Some people are so chemically sensitive that they take less then the minimal dose suggested for medications. Everyone has a different story and symptoms. For me, just when I think that I have seen my last new symptom, something else comes along. Some symptoms are scarry and others are just annoying. Don't worry about being wordy, you post was great and very informative. This is a good place to let off steam, get information, meet nice and caring people. It's nice to meet you steph

I realize this isn't until September but there is no time like the present to get started on this. http://www.mychronicillness.com/invisiblei...llness/home.htm

here is a website http://www.postgradmed.com/issues/1999/10_...9/gahlinger.htm

I have the flickering of my vision too. They couldn't explain it but I see a neurologist at the end of the week, maybe he'll have answers for me. I've had problems with vertigo and dizziness. Many years ago I used to play this game called Quake online with my friends. The 3D motion of the game would make me so dizzy and nauseated that after 5 minutes I thought I was going to be in the bathroom on the floor. I had to stop playing the game. When I go to the movies I can't watch the beginning where they have the roller coaster effect of the film clip into the movie theatre, that makes me sick. And ahhh yes, I went and watched spiderman last night with my kids and there were a few scenes where they spun the camera around and I had to look at the floor because it made me dizzy. Now when I go to the movies and I realize that they are doing that kind of filming in certain scenes, I just look at the floor. It stops the dizzy feeling. Don't shut your eyes, that usually doesn't work but look down. It's motion sickness that your experiencing. steph

Maybe they should be taking our pressure from the calves instead of the arm LOL

orthostatics hmmm...another chapter in the weird things we go through. High on one side and low on the other. Have you had a carotid ultrasound of your neck done? Numbness, not sure. One might think TIA, stroke, sinusitis. It might be a question for a neurologist. I have had numerous vision problems over the past year. Everything from weakness, blurred, inability to distinguish color, flickering, etc. I saw an eye doctor and they said my eyes look fine. My primary had an MRI of the brain ordered and it should small spots in my brain where I've been having mini-strokes due to low blood pressure. Are any of your medications causing side effects.

Well stay on top of it this time. Don't let them put you off for weeks, months and years at a time. It's not their pain, it's yours. If your GP isn't doing anything about it, move on to someone who will listen to you. Take care

Here is the website (suggestions for Oprah show), please make a case for a show. https://www.oprah.com/plugger/templates/BeO...plugId=B2100004

Stacey I feel for you Doctor's hate working up abdominal pain, especially for a woman. It can be so many different things. Some women get repeat ovarian cysts, they can grow and be painful or burst. I can't think of as many left sided ailments as right. I know that with POTS your adrenals could be bothering you possibly (that is reaching by the way) but something you could ask about. My mom has diverticulitis and diverticulosis - 2 different things. They usually send you for a Computed tomography (CT) to rule that out. I have had my own bouts of abdominal pain, no answers though. When this all started nearly 3 years ago, it felt like someone took a baseball bat to my left side. (This next thing is just something off the tip of my mind, not trying to direct you anywhere but feel like I need to say it, sure it's not even related) One has to wonder if the vascular system is expanding and contracting at times to allow more blood flow and causes pain. I know that some people have posted about having a pressure feeling. Do you have Ehlers-Danlos? Some of the different vascular ED's could be painful. Have they sent you to a GI doctor to be worked up? If your primary is blowing you off, seek another opinion.

I agree with Merrill. One of the most common side effects of Proamatine is the crawly feeling. I only lasted on Proamatine for about 2 days or so before I went into an extreme itch from head to foot. They took me off of it.

I know that skin feeling/itch too. There are 2 different ones that I suffer through. The first one is an itch everywhere, my endocrinologist figured that one out. My skin would itch everwhere because I was allergic to the color dye in my pills. Some people can be sensitive to the dyes in medication. I also get a sensation on my arms that is kind of like a bug crawling on me. Don't laugh, but when I haven't shaved my legs for a few days and get goosebumps, I am in agony with this horrible feeling. It's like I can feel every hair there is on my legs and it's extremely uncomfortable. Sometimes the goosebumps don't matter, I can just sense that horrible feeling if I have haven't shaved. The only time I wasn't able to lay down was when I had pleurisy. I don't think our problems are related at all, sorry. It sounds horrible and I can't imagine what it must be like to not lay down. Take care.

I have been told that stem cell research is probably going to be our answer to our problems. It is also going to be beneficial for people that have Alzheimers, dementia, MS, auto-immune diseases, (things that take place in the brain), corneal disease, Parkinson's, treatment for diabetes, AID's, spinal cord injuries (like Christopher Reeves), stroke, burns, heart disease, among many other things. Read for yourself http://stemcells.nih.gov/index.asp How do you feel about it? Medscape is taking a vote, please make your own decision about it. http://www.medscape.com/px/instantpollserv...ult?PollID=1140 although I think the weblink might be down this afternoon, please keep trying.

MY ADVICE Unless you see a doctor whom you know he knows what he's doing, don't listen to others. And before you trust him, ask him! where he got his medical knowledge about dysautonomia or POTS! Because if he's one of those doctors that try to bluff their way through, you will be had. I work in an ER and I've mentioned dysautonomia and POTS to them and none of them (nurses, doctors, techs) really knew until I gave them educational medical information (in the form of handouts from the NDRF, Dr. Grubb and the NIH.) One of the doctors I talked to even thought that POTS was shy-drager. LOL Nurses and doctors now ask me questions about what I have, instead of assuming they know. Even residents that we train don't recognize it! I'm telling you first hand that the community of med students and residents are not trained about dysautonomia! So you see, unless the person you talked to has had their own experiences or have had special training they probably don't know what they're saying. Please trust me on this. Our techs don't have any certificates to do what they do. They were hired and trained by us. We even hired one of the house-keepers to be a medical tech and he draws peoples blood, splints their broken bones, etc. In case your wondering, I work in a very large city hospital, not some country back roads place. For a real definition of dysautonomia you can go to this website - http://www.ndrf.org/ or download the book called THE NDRF HANBOOK for patients with Dysautonomias http://www.ndrf.org/Reference.htm or here at Pots Place http://www.potsplace.com/ Multiple system atrophy is under this category Here is a website that explains MS - is thought to be an Auto Immune Disease http://www.nationalmssociety.org/Brochures...t%20is%20MS.asp When our autonomic nervous system malfunctions, it is known as Dysautonomia. I hope some of this helps. It is often best to do your own investigative foot work to verify things that people tell you. Don't take their word for it. That is why when I respond to someone on this forum (if I'm not ranting) I always try to provide web links that you can read for yourself. One of my favorite web pages is http://home.att.net/~potsweb/POTS.html

I found this tonight when I was searching for something and wanted to share it. I apologize if you have already seen it. http://www.maskedflowerimages.com/cfspage.html

This is interesting http://www.cerefolin.com/

I didn't find what you are looking for but this is an interesting article http://www.diabeticneuropathy.org/deficiency.htm http://www.nobel.se/medicine/articles/carpenter/ http://www.betsyhealth.com/oct03.htm http://www.sierratimes.com/archive/sthealt...arleftm0101.htm Vitamin B12 deficiency has another effect on the heart as well. Turkish researchers recently reported that people with megalobastic anemia have abnormal electrical conductivity of the heart. The problem originates in the nerves that control heart rate. When the anemic volunteers took supplemental B12, heart rate returned to normal.

They give a description here at http://www.potsplace.com/ You can also download a very good book from the NDRF website on people with Dysautonomias http://www.ndrf.org/Reference.htm

Really Potatoes? Good to know, I eat a lot of those too! I hate the treatment some people get at ED's. You know what they need to develop is a service. One that you can have doctors call for all of your medical history. Someone that will advocate for you when your ill and say yes they have had this going on or that. Someone that can list out your medications and what doctors you see, regarding what problem. Someone that is assertive and will make your case for you. steph

None of us our medical professionals - what we say is just from our own experiences or research, which may have nothing to do with you. Electrolyte dilution- That can be true but it can also be an indication of many other things or nothing at all. If it were that she had diluted her electrolytes down then everything would be low. She can have chronic diarrhea/vomiting, certain prescriptions, diet habits; that can cause hypokalemia. If her electrolytes had been low for awhile she would have other hypokalemic symptoms like muscle cramps, muscle weakness, palpitation, nausea/vomiting, depression, confusion, polyuria. I have had periods of hypokalemia (low potassium) but nothing else has been diagnosed. I have severe muscle cramps in my calves to the point that it is hard to walk when my potassium is low and now I just try to eat a banana a day to help. I had a friend who started a new job and had to have a pre-physcial. His liver test was elevated and lytes were a little off. They sent him back for follow up in 3-6 months and everything was normal. But if you would like information about hypokalemia I have attached a web link http://www.ahealthyme.com/article/gale/100084746 or http://www.emedicine.com/med/topic1124.htm What did the ER doctor say to you about the combination hypokalemia and liver test? Did they prescribe potassium for you? If they thought it was serious they probably would have kept you overnight for further testing. OK that's my 2 cents (non-medical professional)

Welcome to this great forum! I always say it because it's true and you will get plenty of support here. The symptoms are varying in degree and can be frustrating. You can get one licked and then another one pops up. When this first started my left leg was the one that bothered me the worst and it would ache, cramp/spasm, numb/fall asleep, discolor occasionally. I recommend looking at this website on common complaints and suggestions of what others do. Support hose can be beneficial for blood pooling in the legs. Here is an article, it's not pretty though and I rarely ever link it http://www.nymc.edu/fhp/centers/syncope/ch...intolerance.htm It's always good to rule out other things and very common for POTS patients to have other diagnosis. I have a very bad case of POTS and have had many symptoms. I'm grateful for my cardiologist in Ohio, he keeps me going with his different treatments; otherwise I would have been bed-ridden by now. Keeps us posted on how you are doing steph

OK, I found some of the numbers they were in my NDRF handbook by Dr. Goldstein and Linda Smith. It says that about 60% of patients with Chronic Fatigue Syndrome have Chronic Orthostatic Intolerance, with Postural tachycardia syndrome (POTS), Neurocardiogenic syncope, or both.

Welcome to this great forum, glad you found all of us. Your lucky to have a diagnosis so quickly. I have read stories of people waiting a decade for their diagnosis and that's after years of being told that it's all in their head. I don't know what the doctors think brought your POTS on because that can make a difference in your recovery time, but I've been told the usual recovery time is 2 years. That isn't the case for everyone and they are finding now that POTS is also genetic. Some people deal with POTS the rest of their lives. Some people have mild cases and some not so. It also depends on how well you take care of yourself. I've been cold since I can remember and that is about 2-3 years old. I remember climbing in bed with my aunt and she would always complain about how cold my feet were. I touched someone at work last week and he said owww. The person next to him said owwww? and he said yeah, touch her hands. Think how I feel, I'm the one with cold extremities. steph

I really need to get organized. I have all of the documented numbers somewhere around here on this subject. OK, so I'll go off of memory here. I believe it to be a 1/3 overlap of POTS/Chronic fatigue. I also have heard that many of the CFID's suffers have POTS and aren't aware so they haven't been diagnosed. I too suffer all of the same symptoms that Ethan's mom listed out when I'm fatigued, not enough sleep. When I have over pushed myself, I can easily sleep 19 hours before I feel better. I worked an extra shift last week and slept for 19 hours afterwards. Yesterday I wasn't feeling well and I slept 15 hours. Talk about losing life to sleeping or should I say wasting life to sleep. The other alternative is worse, feeling sick from exhaustion. Give me a blanket, pillow and soft place to lay down, guess sleep wins out. Maybe that explains my Avatar - Sleeping Beauty aka Briar Rose! (She was one of my favorite Disney characters before I got sick) steph

Go to this web page http://www.rei.com/online/store/Search?vca...ery=accelerade# on this page above the drinks listed is a weblink "comparison search" this will list out all the sports drinks and their contents. My doctor recommends accelerade like Lance Armstrong drinks. This is also a website from REI, so you don't have to buy anything, but it is the best comparison chart that I have found so I use their website.

Check it out, this is the first time that I've seen us on abc news! http://www.abcnews.healthology.com/focus_a...dio_orthostatic Pressure Drop: Treating Orthostatic Hypotension Published on: January 30, 2004 By Christine Haran In a society that breeds tightly wound, type-A personalities, it's no surprise that hypertension, or high blood pressure, is a major health concern. But low blood pressure can also wreak havoc on one's health and ability to function. Blood pressure can bottom out for a variety of reasons, including massive blood loss, certain heart disorders, severe infection and from some drugs. And a low blood pressure condition known as orthostatic hypotension, which affects many older people?and some younger ones?often goes undiagnosed and untreated. When most people stand up, their blood pressure rises to increase blood flow to the brain. But people with orthostatic hypotension experience a decline in blood pressure when they stand, or after periods of standing or walking. As a result, they feel dizzy and sometimes faint, and often risk hurting themselves during falls. Below, Blair P. Grubb, MD, a professor of medicine and pediatrics at the Medical College of Ohio in Toledo, explains what causes hypotension and how people can learn to live with it. Can someone's blood pressure be too low? Just as there are some individuals whose blood pressures seem to run too high, there are also individuals in whom blood pressures seem to run too low. Blood pressure has to be adequate to provide enough blood and therefore oxygen to reach the brain. Once it drops below a certain threshold, there is not enough blood going to the brain and you can experience a whole bunch of different symptoms. Depending upon how much the oxygen delivery to the brain drops, there can be fatigue, light-headedness, problems thinking and ultimately loss of consciousness. How is blood pressure controlled during standing? The system that regulates all this activity is referred to as the autonomic nervous system. When normal individuals stand, gravity tries to pull blood downward into the lower half of the body. By being on two legs, humans have the greatest degree of challenge because our blood pressure regulating systems were mainly designed for an animal that would be on all-fours. So that the very organ that defines our humanity, our brain, is placed really at a very precarious position in reference to maintaining a constant oxygen supply to it. So when a normal person stands up, gravity will try to pull somewhere between a quarter and a third of your blood into the lower part of your body. Your brain senses that this has happened when receptors in blood vessels are stretched giving off more electrical activity. So when you stand what your brain detects is a sudden increase in the electrical activity coming from the lower half of the body's blood vessels compared to the upper half of the body's blood vessels. The body then compensates by doing three things. Your heart beats faster. Your brain also tells the blood vessels in the lower half of your body to tighten?about three times as tight as they were before. This pushes blood from the bottom half of your body upwards. It does it all virtually within less than a second. Now when you're upright you have to maintain the tightness of the blood vessels, otherwise blood will just pool into the lower part of your body. If the amount of pooling is sufficiently great, the blood pressures will fall. And if it falls low enough, you will get symptoms or lose consciousness. What is orthostatic hypotension? Normally, when you stand up, your blood pressure actually goes up slightly. Your heart rate usually goes up 5 or 10 beats. So your body really overshoots a little bit to give you a little room to work with. In people with orthostatic hypotension, upon assuming upright posture, the blood pressure falls more than 20 points systolic or more than 10 points diastolic. What it means is the vessels are not making the initial constriction they should and are allowing too much blood to pool into the lower half of the body. In some people, this is just a minor thing and they feel a little lightheaded when they get up quickly, but it's no big deal. In other individuals, however, if it's severe, it can make it so that every time they get up, they get a great drop in their blood pressure. And accompanying that, they can have extreme dizziness. They can't think straight due to lack of flow to the brain and may lose consciousness. Other people may be able to initially make that compensation, but not maintain it. And so as they stand upright for progressively longer periods of time, more and more blood pools into the lower half of their body. This progressive pooling of blood into the lower half of the body, what years ago they were once called "delayed orthostatic hypotension," is not uncommon in older people. Who is most likely to have this condition? The orthostatic hypotensive disorders are somewhat more common among older people; older being defined as greater than 50 or 60. When we age, our blood vessels get somewhat hardened and don't respond quickly. What can cause orthostatic hypotension? There are a large variety of different conditions that fail to make appropriate compensations for gravity?failure of the adrenal glands, hypothyroidism, dehydration. Sometimes certain medicines will do it. For example, the tricyclic antidepressants are well known for lowering blood pressure. And interestingly, sometime people have hypertension when they're lying down and hypotension when they're upright. Oftentimes doctors only focus on the hypertensive part of it and give medicines to try and treat it which makes the upright hypotension worse. And there are some people who develop disorders that result in the inability of their blood vessels to tighten appropriately. Pure autonomic failure, for example, is a disorder that tends to affect older people. Those individuals are unable to control multiple things that the autonomic system controls, not just heart rate and blood pressure. So they may experience not only orthostatic hypotension, but an inability to sweat, difficulty with urination, impotence, rectal dysfunction and a variety of other things. Many patients with Parkinson's disease will also exhibit orthostatic hypotension that can be severe at times; many of the drugs used to treat Parkinsonism can worsen this. Another neurodegenerative disorder associated with orthostatic hypotension is Shy-Drager syndrome, which was recently renamed multiple system atrophy. It is characterized by a slow progressive downhill course where people develop not only severe and debilitating orthostatic hypotension and recurrent fainting episodes, but also tremor, difficulty walking, and then a progressive failure of various neurologic functions. Postural orthostatic tachycardia syndrome, or POTS, is a milder form of failure of the autonomic system where heart rates go very fast on standing. This occurs in an attempt to compensate for an inability to tighten blood vessels and for the higher than normal degree of blood pooling in the lower parts of their body. This disorder tends to affect younger people and occurs more often in females. How are these conditions diagnosed? The first thing is accurate measurement of the blood pressure. This has to be done lying down, sitting, immediately upon standing, after two minutes of standing upright and then usually around 5 to 10 minutes of standing. You have to measure the heart rate in all of those positions as well. In addition, the physician needs to perform a complete physical exam, which includes a neurologic exam to try to rule out other conditions that would cause orthostatic hypotension. Tilt-table testing is a good diagnostic tool because it's a nice standardized way to measure this. You put somebody on a table and tilt them at a not-upright angle?between 60 and 70 degrees?and you have them strapped into place so they can't fall, but also can't move. A normal individual should be able to stand there for hours. However, in an individual predisposed to these disorders, it will result in a decline in blood pressure. There are other types of autonomic testing that can be performed if you think there are other aspects of the autonomic system that are failing. For example, you can measure the person's ability to sweat by doing a thing called the thermo-regulatory sweat test. How is orthostatic hypertension treated? If you can find and treat a cause such as hypothyroidism or adjust a medication that might be the cause, hypotension can be reversible. Other treatments include Florinef (Fludrocortisone), which raises blood pressure and sensitizes blood vessels so that they can constrict more easily. Vasoconstrictors such as ProAmatine (midodrine) help tighten blood vessels and prevent blood from draining into the lower half of your body. Other drugs used to treat orthostatic hypotension are erythropoietin and yohimbine, which appear to be kinds of vasoconstrictors. And since vasconstrictors are chemically very similar to stimulant drugs like Ritalin and its cousins, such as Dexedrine, these can also be used. In addition to their stimulant activity in the brain, they constrict blood vessels. Antidepressant serotonin reuptake inhibitors (SSRIs) are also used because serotonin is the principle neurotransmitter that the brain uses to govern autonomic control, in particular to govern blood pressure. How else can people with orthostatic hypotension minimize their symptoms? We've published a series of studies showing that biofeedback can be a very effective therapy in treating these disorders. In biofeedback, the individual tries to learn to control their blood pressure. There are elastic support hose that, if tight enough, can help prevent pooling into the lower half of the body. They usually have to be waist high because you're pulling blood from your waist down. They are expensive, usually about $100 to $200. They are difficult to put on, hot in the summer, but they are helpful. People can also drink a large amount of fluid (around two liters) and increase their salt intake to increase the amount of circulating blood and keep their pressure up. You can also teach people maneuvers to raise their pressures enough to prevent them from passing out. For example, crossing your legs and pushing the legs against each other can sometimes help. When the muscles in your legs contract, they push upon blood vessels and propel blood back to your heart and can raise your blood pressure as much as 10 points. ? 2004 Healthology, Inc.