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Everything posted by Pistol

  1. Hi @Pharmgirl - here is a link to dysautonomia international and the video shows how to properly take orthostatic vital signs ( poor man's tilt )
  2. I am glad you found answers here. I have come to realize that talking to Others that go through the same thing can be more rewarding than the theories and opinions of physicians that are not even sure what it is you have!
  3. Thanks for asking @Scout. Yes, I am better and trying to get back to my normal level of activity. Be well yourself!!!!!
  4. @Scout Prinzmetal angina - for me - is a tight, heavy pain right at the heart and it radiates up my left neck and at times down my left arm. Sometimes it is accompanied by mild shortness of breath. I have Raynauds syndrome in my toes, which means the venes spasm and constrict to where there is no longer any circulation and they turn blue. Prinzmetal is the exact same mechanism, only in the heart. I have an inverted T-wave in my EKG which is chronic but can mean that there is muscle death in the heart, so my cardiologist did a heart cath. That is when he discovered the angina b/c the coronary vessel that the catheter was in spasmed and they could see it. I took a nitro patch for a while but since I started with weekly ( and more if needed ) IV fluids I no longer get the pain and stopped the nitro. That - IMO - is proof that the IV fluids do more for POTS than just hydration ( as so many sceptics believe ). If the increased blood volume from the fluids can prevent excessive vasoconstriction then it is obviously a more complicated matter for POTS sufferers. I have hyperadrenergic POTS which causes excessive vasoconstriction which in turn causes high BP, tachycardia and orthostatic intolerance as well as sooooo many other miserable symptoms, all of which have improved with the fluids. Sorry about the rant but I am just so frustrated about physicians that refuse to even TRY IV fluids for POTS when it is obviously effective.
  5. @judyinthesky I am severely medication sensitive due to POTS, which has made finding the right med difficult. I am under the care of wonderful doctors who work together to minimize my symptoms. Whenever a new med gets introduced they start half the lowest dose - or even the pediatric dose first. Then - depending on my tolerance - they gradually increase. Sometimes this ended up bad ( I thought I was dying on a minimal dose of Clonidine, Benadryl puts me into a coma and any OTC cold medicines drive my heart berserk ). I am blessed to be treated by an experienced autonomic specialist that completely understands my illness and therefore was willing to try different meds on me. I am now on 11 meds for POTS. Some are half the lowest dose, some are the maximum dose ( my beta blocker for example ). ---- Unfortunately treatment of dysautonomic conditions is often hit-and-miss and we have to be brave and try new meds, even if we do not end up tolerating them and they have to be stopped. It is frustrating to both patient and physician and both have to be patient. Also - recently someone posted that there is a test for medication tolerance that can tell which meds not to take, but I do not know about this test. It might be worth asking your doctor about it.
  6. @phillipc421 you do not have to pass out to have NCS or dysautonomia. Feeling as if you are about to pass out ( pre-syncope ) is counted as syncope because it is caused by the failure to adequately circulate the brain due to changes in BP and HR. Here is a very interesting article that might answer some of your questions: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ Especially this paragraph caught my interest for you: Symptoms include mental clouding (“brain fog”), blurred or tunneled vision, shortness of breath, palpitation, tremulousness, chest discomfort, headache, lightheadedness and nausea. While pre-syncope is common in these patients, only a minority (~30%) actually pass out. The chest pains are almost never due to coronary artery obstruction, but are sometimes associated with electrocardiographic changes in the inferior leads, particularly when upright [6]. Many patients complain of significant exercise intolerance and extreme fatigue. Even activities of daily living, such as bathing or housework, may greatly exacerbate symptoms with resultant fatigue. This can pose significant limitations on their functional capacity. The disorder primarily affects women of child-bearing age. The female:male ratio is 4:1. The reason for the strong female predominance is not known, but it should be noted that orthostatic tolerance is reduced in normal healthy females [7]. Others disorders such as autoimmune diseases and irritable bowel syndrome are seen commonly in patients with POTS, and also have higher prevalence in women. Patients frequently report that their symptoms began following acute stressors such as pregnancy, major surgery, or a presumed viral illness, but in others cases, symptoms develop more insidiously. About 80% of female patients report an exacerbation of symptoms in the pre-menstrual phase of their ovulatory cycle (unpublished data). Gazit et al. have also reported an association between joint hypermobility and POTS [8]. Many patients have bowel irregularities and have been co-diagnosed with irritable bowel syndrome, and some have abnormalities of sudomotor regulation [9].
  7. @judyinthesky this article touches on many of your questions: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ They specifically mention IBS and medication hypersensitivity. And yes - as far as I have researched trauma of ANY kind ( even hormonal dysruptions such thyroidectomy or surgery in general ) can cause dysautonomia. Remember - dysautonomia is an umbrella term, you do not have to have POTS to have an autonomic imbalance. And medication sensitivity in dysautonomia is often caused because the ANS is not balanced and therefore reacts inappropriately to even the mildest stimuli ( even medications ). Autonomic function testing can often pinpoint the mechanism of a particular autonomic dysfunction. .this article explains this: https://answersdrive.com/what-is-a-autonomic-function-test-7621478 Gastrointestinal problems are very common in dysautonomia. I hope this information is helpful to you. Best wishes!
  8. I read in an article about POTS that chest pains in POTS often are caused by a change in circulation in the chest from vasoconstriction or vasodilation.
  9. Dear @phillipc421 my very first TTT was like yours. All was well until 20 minutes into the test they gave me Nitro, my HR rose and then plummeted and I passed out. They told me NCS, as with you. At that time I passed out frequently. Another TTT a year later was interpreted as normal by that EP ( who was not educated about POTS ) but once my autonomic specialist reviewed the test he said it was clearly POTS ( HR increased over 30 BPM until the end of the test ). I then was diagnosed with hyperadrenergic POTS by blood tests for neurotransmitters. As far as I know the initial treatment for NCS is similar as for POTS: increase oral fluids, increase salt intake and wear compression hose ( this should be purchased through a medical supply center where they can measure your legs in order to give your the right fit for your body type ). In general with dysautonomia ( whether POTS or NCS ) mild aerobic exercises are recommended. Strenous exercises have been found to worsen symptoms. You may want to read this article from our website: Your symptoms could improve by following these simple steps as well as following up regularly with your doctor to go over any changes. Best of luck!
  10. @Scout - yes, I get these sharp pains in the middle of my chest. In my case they have diagnosed them as esophageal spasms, since I do have GERD. I also have Prinzmetal angina, which is a rare condition that causes the coronary blood vessels to constrict. This feels definitely different than the esophageal pain: it is a squeezing, tight pain in my left chest that sometimes radiates into my neck or down my left arm and it can lst quite a while. The esophageal spasms usually only last a few minutes. Since your cardiologists are not concerned about the pain maybe you want to consult a gastroenterologist? Reflux disease can cause this pain aa well as many other unpleasant symptoms and can easily be controlled by medication and diet. Another sign of GERD can be frequent burping, heartburn and bloating.
  11. Dear @Alice Jean - I am so sorry you are going through this! I too became disabled and housebound 6 years ago from hyperadrenergic POTS, after 23 years of being a full-time RN. I often felt - and at times still do - feel useless and depressed. I too need a wheel chair to go shopping or any other events where walking is required, but I mostly don't even go because then I have to rest for a day or two after. As you see - I can relate. However - when I feel low and down like that I list all of the things I still CAN do and all the blessings in my life, such as my family and all the many people that help me in any way. There is still so much to enjoy in life and if I run out of things I can do I create new ones. Before Christmas I was depressed b/c I could not really do any shopping or crafts for gifts. But I found an old book on candle making and bought supplies on amazon and voila - I was able to make beautiful handmade scented candles in all shapes and colors as individualized gifts for the whole family. They loved them and it became a rewarding hobby for me which I enjoy. Today many people bring me their left-over candle stumps and I create new ones for them out of all of the wax. --- Your life may feel like it is over but in reality - it is just not as it was. I have found that we do not have to be upright, healthy, energetic or even particularly creative to make our days worthwhile. My mother always said: " Just because it is cloudy does not mean the sun don't shine"! -- Be well, dear Alice Jean, and best wishes!!!!
  12. dear @Eduardo - please notify your physician of this right away. Some side effects can be transient and normal but others may mean the medication should be changed. Only your prescribing physician would know, please call him or make an appointment
  13. @Clueingforlooks @p8d- I just spent a week in ICU for seizures and the monitor was right by my bedside. While there I took my usual POTS meds but was on bedrest. My HR ran between 50 and 85 but my BP was all over the place. It was 81/58 one minute and the next reading showed 143/92! All while lying in bed. One night the RN withheld my 37.5 mg Carvelidol b/c my BP was low as well as my HR. The next morning he did it again. I was in tears. Thankfully by 7 am my doc came in and set them straight. We have learned that my BP is so chaotic that changing dosages all of the time makes it much worse. We do not mess with the beast unless either HR or BP are constantly abnormal. And as I said - in my case it changes all of the time. To me it is mor eimportant to listen to my symptoms than to go by the numbers. If I feel weak, fatigued, sluggish - I need an infusion to bring me around b/c it will bring up my BP. When I am hyperadrenergic ( tremors, irritable, nauseous, brain fog, fast talking, blurred vision etc ) my BP is always high and - surprise - I need IV fluids to stabilize everything. Compared to years ago I function relatively well on my meds, IV fluids and a careful regimen of exercise and rest. I do drink a lot of herbal teas and broth as well as ginger ale but they do not do anything for my orthostatic stability - probably because I also have IC and pee everything out right away. --- I am a passionate supporter for IV fluids in refractory cases and am still very disappointed that the medical community remains skeptical in general, despite the blatant evidence of so many POTS sufferers benefitting from - even periodic - infusions.
  14. @judyinthesky- my husband does not have POTS (thank God) but he has been struggling for many years with SIBO. Terrible bloating, floating stools, abdominal cramps … GI specialists checked everything and could not find anything. they also poo-pooed the idea of SIBO. So our wonderful PCP treated him with Flagyl and Cipro, put him on a low fat and low sugar diet and then prescribed a quality Pre- and Probionic supplement. TADA!!!! Bloating only appears after breaking his diet and he no longer has bowel problems. And no more cramps!
  15. @Jwarrior77 - I have this and my doctor called it livedo reticularis. I get it when my blood vessels in the legs dilate after constriction.
  16. How true, @green ! It took me years to understand this! Since Exercise is recommended for POTS I thought if I exercise a lot then I will get better. The truth is the exercising ( and generally ignoring the alarm signs of my body ) led to the POTS becoming much, much worse. Today I know what activities I have to avoid ( anything requiring me to stand for more than 2 minutes ) and what helps ( rowing machine - it uses most muscles in one sitting exercise! ) and also that on bad days moving around the house is exercise enough.
  17. @Jwarrior77 - I suppose it can but I am not sure. When I had allergic reactions to insect bites my hands and feet turned red and hot - probably from histamine.
  18. @Scout yep, I have it too. When POTS is at its worst for me I can get up from lying or sitting, take a few steps and completely sway to one side. I mean I will actually fall into a wall (usually the left side) and I have absolutely no control over it. I believe - at least in my case - it is caused by the abnormal and delayed response to sudden change in position, from sitting to upright.
  19. Good point, @Sushi. @Dog Daddio I wonder if it is either the ACT of straining or else the fact that your bowels are so active that the ANS triggers an abnormal response resulting in your symptoms?
  20. @Sushi - I did not know there was such a thing! I tried so many meds over so many years - I wish I had known that a test like that exists!
  21. @WanderWonder - to the best of my knowledge low sodium levels do not cause POTS but increasing salt in your diet can improve orthostatic intolerance and low BP and tachycardia. I was severely symptomatic in my Teens, got better and then became disabled in my 40's. I realized in retrospect that I had craved salt all of my life ( I used to chug soy sauce as a child ) and always preferred salty treats over sweets. I believe the body craves what it lacks and salt truly helps many dysautonomia sufferers.
  22. @WanderWonder - personally I am not at all concerned about my HR jumping up and down constantly. It is when I GET SYMPTOMS that I am alarmed, and this can be from HR, BP or both changing rapidly. So - IMO ( and in my Experience ) rapidly changing HR is not a dangerous thing. My daughter's HR jumps up and down like crazy every minute and she had many monitors - it just shows Sinus arrhythmia, a harmless rhythm abnormality. It is only when she gets symptomatic that any HR anomaly causes concern.
  23. @WanderWonder I got this info from here: https://ouraring.com/heart-rate-variability-basics/ What Is Heart Rate Variability (HRV)? A healthy heart beat contains healthy irregularities. Even if your heart rate is, say, 60 beats per minute, that doesn’t mean that your heart beats once every second – or at one-second intervals like a clock. Rather, there is variation among the intervals between your heartbeats. The interval between your successive heartbeats can be, for example, 0.85 seconds between some two succeeding beats and 1.35 seconds between some other two. Even though the difference is measured in parts of seconds, you can actually feel the difference. Here’s a tip for anyone who wants to experience it: place a finger gently on your neck or wrist and find your pulse. You should feel that the longest intervals take place when you exhale, and the shortest intervals when you inhale. The Basics To understand HRV, we first need to understand our nervous system and heart rate. Heart rate variability can be traced back to our autonomic nervous system. The autonomic nervous system regulates very important systems in our body, including heart and respiration rate and digestion. The autonomic nervous system has a parasympathetic (rest) and a sympathetic (activation) branch. Heart rate variability is an indicator that both branches are functioning – the parasympathetic in particular. Intrinsic heart rate is measured in the condition in which neither parasympathetic nor sympathetic regulation is present. When completely blocked from autonomic regulation, a healthy heart contracts at a rate of about 100 beats per minute (the number is individual, however). Parasympathetic regulation lowers your heart rate from the intrinsic level, giving more room for variability between successive heartbeats. Parasympathetic regulation causes almost immediate changes that affect only a few beats at a time, after which the heart rate returns towards the intrinsic rate. Sympathetic regulation elevates your heart rate from the intrinsic level, and there is less room for variability between successive heartbeats. Sympathetic regulation affects several consecutive heart beats.
  24. @Sushi, @p8d - I have found the same to be true for me, especially this I have found that certain exercises DRAIN my energy ( anything upright or strenuous ) where as others GIVE me energy ( like mild weightlifting, rowing or reclined aerobics ). However - whatever the exercise may be, if I do not stop in time I will pay. Personally I have tried - but not succeeded - with increasing my exercises steadily. I seem to get stuck at the same max every time and if I go above I take a set-back.
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