POTS (Postural Orthostatic Tachycardia Syndrome)Postural orthostatic tachycardia syndrome (POTS) is a condition of dysautonomia, and more specifically, orthostatic intolerance, in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. This is often, but not always, accompanied by a fall in blood pressure. Several studies show a decrease in cerebral blood flow with systolic and diastolic cerebral blood flow (CBF) velocity decreased 4. Patients with POTS have problems maintaining homeostasis when changing position, i. Many patients also experience symptoms when stationary or even while lying down. ![]() Postural orthostatic tachycardia syndrome (POTS) is a condition of dysautonomia, and more specifically, orthostatic intolerance, in which a change from the supine. Q: My father has type 2 diabetes and he is seeing double. We went to the hospital about a week ago and they said the diabetes had affected a nerve on the right eye. Evening primrose oil is the oil from the seed of the evening primrose plant. Evening primrose oil is used for skin disorders such as eczema, psoriasis, and acne. Oxbridge essays scampi shrimp recipe nobu-zzvc Samedi. Acetylcholine/Choline Deficiency in Chronic Illness . We hear a lot about vitamins and minerals such as B12, folate, magnesium. Symptoms present in various degrees of severity depending on the patient. POTS is a serious, though non- life threatening, medical condition that can be severely disabling and debilitating. Some patients are unable to attend school or work, and especially severe cases can completely incapacitate the patient.(Great video on POTS symptoms and what is is like to live with POTS)Dealing with one chronic illness is bad enough, but dealing with two can be unbearable at times. I have been dealing with EDS all my life, each year adding on new symptoms and more pain. Along with the symptoms of EDS, I have been dealing with my 'heart problems'.. ![]() I used to describe the symptoms of my undiagnosed POTS. They included severe palpitations, dizziness, chronic fatigue, nausea, tightness in my chest, and passing out. The symptoms started in my early teens, but weren't what I considered severe - some palpitations, some migraines, some fatigue. In my early twenties, the symptoms started to get worse. ![]() I had such severe migraines that I was in a migraine study at UCLA, in which they labeled the cause of my migraines 'undetermined' and said they couldn't help me anymore. I had bouts of passing out quite often, sometimes these accompanied the migraines and sometimes they didn't. I passed out at random times in random places: at home, at work (one time, when I was working for an airline and was checking in customers at the gate, I collapsed and caused a bit of commotion from the passengers and my coworkers!), even driving in the car (yes, scary!). The doctors I was seeing at the time had no clue what was wrong with me and some said it was all just in my head. My occasional heart palpitations became more frequent. Transcript: Cancer as an Autoimmune Disease. Below is an approximation of this video. To see any graphs, charts, graphics, images, and quotes to. Learn all about type 1 and type 2 diabetes with our guide to symptoms, causes, treatments, food planning and more. Known as "The Messenger," Dr. Drucker discloses life saving findings from scientists, PhD's, MD's, and natural healing physicians, in a clear and usable format. Male/59 DX ulcerative colitis Feb08, possible Crohn's colitis DX Mar10. No Meds, allergic to Mesalamine. Remission since Mar10. Food journal instead of SCD. ![]() I was exhausted more and more of the time. The symptoms were getting pretty bad by 2. When I went to Johns Hopkins in June of 2. EDS, I mentioned these symptoms, and the doctors said I probably had POTS (I didn't know what that was at the time), but that it didn't seem bad enough to cause concern, and I didn't need to do anything for treatment other than drink lots of water and eat lots of salt. They said they weren't going to do any formal tests at that point in time. For the next two years, I just took their advice, figured I probably had POTS, but there wasn't anything I could do, and that was that. From 2. 00. 5- 2. I was having a hard time mustering up energy to do anything on daily basis. I was dizzy and lightheaded 1. I was nauseous always. My heart raced all the time, and when I would have a really bad 'episode' (what I called my 'racing heart'), I would be worn out all day. Some days, I didn't even know how I was going to work, let alone get up and move around the house. I knew something was really wrong, so I started to investigate that acronym the geneticist had used: POTS. Postural Orthostatic Tachycardia Syndrome. Finally, in 2. 00. I knew I needed to seek treatment and get a formal diagnosis. And, I was hoping that I also would find some help. I contacted my general doctor who sent me to a cardiologist. They had me wear a halter monitor to watch my heart rate for 3. It had electrodes that attached on my chest and a monitoring device I attached to my waist on my pants. I had to press a button on the device anytime I felt my heart palpitating, and this would record an EKG. Then, I had to call the monitoring center once a day and transmit my EKG over the phone (a very strange thing!). A few times, the people from the center called to make sure I was okay, as they said my monitor recorded my heart beating at dangerously high levels! When the test was over, it was concluded that I had no arrhythmia's but I did have severe palpitations (so my heart raced really fast a lot of the time, but the beats weren't abnormal). After this, they sent me for a tilt table test. My test was positive for dysautonomia and they said I had POTS. During the test, my heart rate went up to 1. My blood pressure fell to 5. I did pass out. What is POTS? What is it like to live with POTS? What are the symptoms? POTS seems to be different for different people. For some, POTS is something one gets as a teen and outgrows it by their early twenties. For others, and I am finding this to be the case for those who have EDS and POTS together, it gets really bad around the mid- twenties and just continues to get worse with age. My symptoms are pretty severe now, at almost 2. When I move, whether lying to sitting or sitting to standing, bending over to reaching above my head - and sometimes movements so slight as turning my head or moving my arms - my blood pressure drops, my heart rate goes way up and I become dizzy, things get black, and sometimes I pass out (which is inevitable if I don't immediately sit back down). I can't stand for long periods of time, like at a concert or in line at the grocery store, and more and more I am having a hard time standing at all. I am always tired, fatigued, have no energy, and this is caused by my heart doing overtime all of the time. I have likened it to 'running a marathon 2. There is no cure for POTS. There are some forms of treatment, but nothing that takes away all of the symptoms. I tried the 'lots of water and salt' plan, which did nothing for me (though I continue to consume lots of water and salt just in case). There are beta- blockers, steroids that make your body retain salts, medicines that keep your heart rate up, medicines that keep your blood pressure up. I went through the rounds. If 1. 0/1. 0 is feeling perfect, the closest I got on medicines was a 4/1. My endocrinologist exhausted all resources she and her team of doctors felt they could, and so I was stuck with a 4 out of 1. That was improvement, so I took it, but when I lost my insurance, I had to stop those medicines (couldn't afford at $1. Some people find relief on the meds, some don't. Some find just a little. That was me - just a little bit of help. Now, with no meds and no other choices, I currently am dealing with the full range of symptoms. I do a lot of resting, have a hard time being fully mobile, and am in a wheelchair if I need to go out and do things that require a lot of walking or standing, or on days I have no energy. Mostly, I just don't do a whole lot. POTS, in itself, can be disabling. EDS can be disabling as well. Put them together and you have me - a young, healthy- looking woman on the outside, who is really ill, battling 2 syndromes that leave me in a lot of pain and thoroughly exhausted. It is very hard to convey this to friends and family. How do you explain your fatigue and pains, how do get across your 'invisible disease' without seeming lazy and like you are just complaining? Most doctors don't even know about the two rare disorders Ehlers- Danlos Syndrome and POTS. I was diagnosed with both, by medical doctors, and yet I still don't get the respect/sympathy I would if I told someone I had Parkinson's, breast cancer, or any other random number of well- known diseases. Not that I discount or discredit anyone's medical condition whatsoever; more so, I find it very hard, very frustrating that all diseases aren't given equal weight. Most people still don't understand. They don't believe me when I tell them I am sick. That is why I have chosen to dedicate time to increasing awareness of EDS, POTS, and bipolar disorder (another post). As the saying goes, 'invisible diseases suck!' - and, yes, they do. So, lets do something about it. And, to keep a bit of humor here, as Elliot said on the TV show Scrubs, 'If you want sympathy, get a disease people can see!' (Just kidding!)(Video: Trailer for Changes: Living with POTS documentary)Symptoms of POTS outlined by Dysautonomia Information Network. Fatigue (which can be disabling) Sleep disorders (can cause unrefreshing sleep and an increased need for sleep) Headache/migraine. Myofascial pain (characterized by regional muscle pain accompanied by trigger points) Neuropathic pain. Dizziness. Tachycardia. Exercise intolerance. Clamminess. Anxiety. Flushing. Postprandial hypotension. Blood pooling in limbs (can make legs feel heavy and appear mottled and purple in color)Intolerance to heat. Feeling cold all over. Low blood pressure upon standing. Cognitive impairment (may include difficulties with concentration, brain fog, memory and/or word recall)Narrowing of upright pulse pressure Cold hands Hypovolemia (low blood volume)Chills High blood pressure. Hyperventilation. Numbness or tingling sensations Reduced pulse pressure upon standing. Low back pain. Aching neck and shoulders Noise sensitivity Light Sensitivity. Disequalibrium. Arrhythmias (irregular heart beats) Chemical sensitivities (May have multiple chemical sensitivity and can be very sensitive to medications - may only need small doses) Easily over- stimulated Feeling full quickly Feeling. Reaching lowest dose of Prednisone. Thread discussing Reaching lowest dose of Prednisone. Eileen. Hgloster. The idea of the very slow reduction is to reduce the likelihood of pain due to pred withdrawal which is so similar to PMR pain you can't tell which is which and often go back to a higher dose that you don't necessarily need. It also means you find the dose that controls the symptoms more accurately because the step between what controls and what doesn't is smaller. If I were you I'd stick at the 8. I say, Kirwan keeps patients at 1. We all know about the desperation to get off pred - it doesn't work like that though. You need the pred as long as the disease is active - in a way it's a bit like diabetes, you need the medication to control the blood sugar level and you wouldn't dream of stopping that would you? Pred is your friend, not an enemy. It allows you a decent quality of life with minimum pain - and that is the choice: you take enough to control it and learn to live with the other bits. No pred leaves you in pain and immobile - high risk for weight gain, osteoporosis, high blood pressure and depression. Plus there is the level of inflammation in your body which increases the risk of cancer and cardiovascular disease. Does this all sound familiar? It isn't a simple case of pred += risk, no pred = no risk. Report this reply to Eileen. HWe delete content if it doesn! I have to come down 1/2mg.. I am on 1. 3. 5 and 1. Ive met some people who have to do 1/4mg once they get that low and still use a plan for than like Eileens. I hope to get to 1. My Gp lets me do my own plan. Report this reply to jennissw. We delete content if it doesn. But can see why it is easy to go along with the doctor and try to come down too quickly - the desire to come off them or to a lower dose is so great re the awful side effects I have. Weight gain, esecially on the face and the buffelo hump, the chin and stomach suffer from this awful fat redistribution. The acne rosea.. the facial hair (wow I must sound very attractive) It would be so easy to rush it. Report this reply to jennissw. We delete content if it doesn. Its a bit like Effexor which I was on for a while to help me get over a tragedy in my family I was on a pretty high dose 3. Forum's are full of people trying to get off this awful Antidepressant,I was lucky that I was taking capsuals so every day I took few of granuals out and I was able to fool it until the last 2. The only downside to treating the PMR is I cannot predict when the rain is going to com for sure. Report this reply to seeana. We delete content if it doesn. Last week I was down to 7. I has a bit of a flare. I think the rainy, damp weather had something to do with it. Anyway, I stopped all exercise and went up to 8. Am on 8 now with little pain & stiffness and hoping to reduce back to 7. Weather is clearing, so hopefully that will help. Good luck with yours. Report this reply to Jobaby. We delete content if it doesn. I am a Master's prepared RN, a hospital administrator, a . I will slow down even more if necessary. It's probably good for me : ) Good luck everyone and thank you UK for actually talking about PMR. I've been on Medrol for over a year, with an aim from my rheumatoligist of 8mg each 4 days although there are occassions when I have to take this after 2 days or 3 days. On average I'm maybe on 3mg a day. Also on weekly Metatraxate and 3 to 4 g of paracetamol and codeine each day. Getting pretty down as I seem to be in constant pain (especially at night) but am reluctant to increase medrol as side effects. I gather from this forum that my dosage is very low. Diagnosed with rheumatoid arthritis at the time and the medrol saved my sanity but it's hard to manage. Any advice would be welcome, please. Report this reply to alan. We delete content if it doesn. My CRP was very high even though I was on another steroid tricotil that did nothing to alleviate the problem and the reduction was over a period of 1. To be honest, I don't know if I have PMR - not diagnosed but the general symptoms sound depressingly familiar. My main problems are with hands and feet but the other muscle problems with PMR are there. If I don't have it then I appologise to you and the group for wasting your time. You have, however, confirmed that the dosage is probably too low and have given me a number of options to follow up. I'm very much aware of negative effects of the pain killers and do have 2 monthly blood tests to monitor liver functions, etc. The French system is very commendable about all things medical and whilst my medical French is pretty good, especially about this condition, there is still a language problem. The painkillers are all on prescription and within my doctors advised dosages. Just one other thing if I may. I cannot see the links that you mention on your post to me. I thank you again for your advice and will probably increase the medrol dosage to a more comfortable level. On the plus side I'll be able to toss the javelin a little bit further although the blood tests might prove a problem in competitions. Sorry, my sense of humour is still trying to get out. Report this reply to alan. We delete content if it doesn. Sorry about the mis- spelling. And i see that it's non- steroidal. I'll look into Ledotra also. And check out the link. Take care,All the best,0. Report this reply to alan. We delete content if it doesn. I went on 5 mg of prednisone last January, and got immediate relief from the joint pain I was dealing with plus other symptoms. Now I have been trying to taper it, and have reached a sticking point between 3 and 2. I was tapering at a rate of 0. I've 2. 5 two days in a row and am getting adrenal insufficiency symptoms, not a joint/pain flare. I also have SLE and hemachromatosis and am on gamma globulin infusions for humoral immune deficiency. My adrenals seem to be not just suppressed but worn out. I appreciate the ideas about how to do this slower- -my cardiologist (I am 6. I should carry 5 mg tablets in case of a stress incident. Report this reply to kathleen. I am now on 1. 2 1/2 for 2. Some days I have more pain than others and am often exhausted. I have concluded that it is unwise to be too active when feeling exhausted because it just makes matters worse. I think that everyone is different - what works for one does not work for another. I also think from experience that other medication can have an affect when taken alongside prednesilone. I have on doctor's suggestion discontinued my statins temporarily which has relieved some pain. Also the necessary calcium supplements have caused chest pains so have resorted to drinking quantities of milk. This is personal to me and I only mention it as an illustration of the fact that we are individuals and are affected in different ways. In my opinion Speed of dosage reduction can only be decided according to the individual's reactions in consultation with the medic. Hope this helps a bit. Report this reply to Jaydy. We delete content if it doesn. I can see when I tried so hard to wean myself faster, the pain, lung condition, and insomnia was much worse. Also try to take early in the day, with lots of water, seems side effects not so strong.. I'm not looking for trouble, can't function when I can't breathe a- be gentle with yourself, treat yourself as your best best friend.. Report this reply to sophiesu. We delete content if it doesn. I was diagnosed with PMR about two weeks ago. Other RA and other tests were all in normal range. Besides the result of the tests we must follow our symptoms but the docs do not think that way . In general they tell us to go down 1 mg/ month!!! Stay well! 0. Report this reply to iellen. We delete content if it doesn.
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