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About Pistol

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    gardening, my family, reading

    " And I think to myself - what a wonderful world!"
    Louis Armstrong

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  1. @MTRJ75 - this is an ongoing challenge for many of us. I too have been doing good this week and have been able to get a lot done. Since I am currently able to do light gardening chores outside and also do household chores I leave it at that - bending, stooping, carrying watering cans, mopping or vacuuming all counts as exercise and actually taxes me more that a few minutes on the rowing machine. So I do not add any other exercise. However - if I am not able to leave the house or am not feeling well I do the rowing machine 2 times a day for a few minutes - it helps circulation and the joints etc. What I have found is to schedule your exercises around your body - not the other way around. Find out when you feel the best ( for me it is mornings ) and then exercise MODERATELY, followed by rest until you feel energized again. This - for me - is the clue: to follow all exercise with rest. And to not do anything when you are not feeling good, it is your body signaling you that you are not up to anything that day. If I fight this I pay big time in the following days!!!! I also schedule Off-days following busy days, that way I can recoup and not go into a flare.
  2. @Mommy1989 - great to hear you ordered compression hose, let me know how they work!!! No doubt will they require a bit getting used to, especially in warm weather. But if they help you feel better - they are worth the nuisance!!!! The criteria for POTS is 30 BPM or above 120. So, in other words: if you start out 80 BPM when sitting and jump to 110 BPM when upright - that still is a 30 beat jump. And it is important to check if the HR stays elevated while you are upright - if it goes back down after a few minutes it may be a normal response to being upright. Good Luck with the compression hose - and everything else!!!!!! Keep us posted!
  3. Yep - that is exactly what I expected them to say!!!!! Sinus tachycardia and PVC's ARE harmless rhythms, but if they occur every time you stand and go on for hours they are not the everyday sinus tachycardia! This is what used to happen to me - until I responded to the ER docs " You are perfectly fine, nothing is wrong on the monitor or with your BP" with the suggestion of taking orthostatic Vital signs. As soon as I stood up - BINGO! - HR and BP went soaring. They would then proceed to at least give me IV fluids ( a instant, temporary cure for POTS in many cases ) and send me back to my PCP. I even used to pass out constantly and take autonomic seizures ( witnessed by doctors, on monitor and even EEG ) and they claimed I made it up. For real!!!! I hope so. Just inform him/her of your suspicion of POTS, what you have found out about it and how your symptoms go along with this condition. Hopefully your doc(s) will order the proper testing and then agree to refer you to a specialist.
  4. @Chuske - this used to happen to me all the time when I was unstable. For me it was b/c in my case the adrenaline would not drop during sleep, as it does in healthy people, and the digestive system never "slept" due to the high adrenaline. Bloating and Reflux were very uncomfortable during the night - and the day as well!!! Yes - I totally agree. In my case the EGD revealed a lot of problems due to the acid and gastroparesis and I needed about a year of heavy GI meds ( I took about 6 different meds at that time for GI issues ) and a complete change of both diet and eating habits. Generally low acid foods. higher protein, lower carbs and 6 snacks rather than 3 meals helped me a lot. Other tests they did were a barium swallowing study to determine if there were any anatomical reasons for the reflux and a gastric emptying study - to see if the food leaves your stomach normally or dumps too fast or stays too long. They also took biopsies during the EGD to test for H. Pylori and Gluten sensitivity. Food allergies or sensitivities can also play a major role in digestive troubles.
  5. @Chuske - I never really had a set amount, I would simply eat salty snacks ( olives, pickles, added table salt etc ) during the day and drink as much as I could. I would try to drink at least 8 - 16 oz ( 1 or 2 glasses ) of liquid each hour ( although this is difficult, since I do not usually feel thirst ). It was never enough - somehow I always peed out more than I took in ( in my case dysautonomia affects the bladder and I urinate too much ).
  6. @Abe - when I first became ill with POTS I felt utterly alone, alienated from the rest of the world and almost hopeless. There was no one to tell me what was wrong with me, everyone ( from docs to family and friends ) thought I should just "snap out of it" and I tried to do that but did it never worked ( and then I blamed myself ). Only once I found a specialist who knew all about my symptoms, how to treat them and - most importantly - finally put a NAME to my them did I finally feel understood. For many of us finding out that this is an actual illness ( and not something we can control ) feels like a huge burden lifted. You are not alone - and since most of us experience many of your plights the people on this forum will listen - and we will try to help if we can. It is the reason Dinet exists. Be well!!!!!11111
  7. Oh - poor @Starrynight!!!! This sounds like me completely!!!!! - When I first became ill with POTS no one knew what it was and I kept getting the cold shoulder from cardiologists. So I went on to do my own research and found that I had hyperadrenergic POTS. Once I brought this to my PCP's attention he agreed to the possibility and send me for a TTT, which confirmed NCS. After a years waiting period I finally saw an autonomic specialist, who ran neurotransmitters and confirmed HPOTS diagnosis. So - you are right to suspect dysautonomia. Your symptoms are pretty typical for POTS, and both pregnancy and viral illness ( which you mention in your post ) can cause POTS. So you are not wrong by suspecting this. The requirements for a POTS diagnosis are symptoms over 6 months ( check ), a sustained HR increase of 30 BPM or more within 10 minutes of standing without a significant drop in BP and the type of symptoms experienced ( all of your symptoms are typical for POTS ). Of course no one here is able to diagnose yo,u but I certainly would ask your cardiologist to have it checked ( actually - I would DEMAND it ). Cardiologists unfamiliar with dysautonomia often think of SVT first - mine did, as does yours. The cardiac monitor should show if that is the case. IF it is POTS, however, the monitor will most likely just show Sinus tachycardia and maybe extra systoles, which may be brushed off as harmless. They might claim that it is due to anxiety, dehydration or exercise and simply tell you to drink more fluid. And that is ONE treatment for POTS ( along with an increase in salt intake ) but may not be enough. The first - and often most important - test for POTS is a Tilt Table Test ( or TTT ). It will show if your HR stays elevated or goes back down when standing - there are protocols for this that even cardiologists inexperienced in dysautonomia should follow. Here are some articles from our web site you may find helpful: Personally I printed out articles, underlined the symptoms and facts pertaining to me and brought them to my appointments. This way even the most ignorant physicians had to consider it. I am blessed with an excellent PCP who believed in me and worked with me towards diagnosis and treatment. But beware - even if you get a diagnosis following a TTT they may simply prescribe a betablocker and expect you to be fixed ( which may or may not be the case ). So after the TTT and if it shows POTS I would seek a referral to an autonomic specialist ( see the list under our physician tab on the home page ). In the mean time an increase in fluid and salt intake ( unless you have high BP - then check with your doc on the salt first ), compression hose ( thigh-high preferably ) and ample rest may be needed to hold you over and give you some relief. Also - the book "The Dysautonomia Project" is very helpful. It is written BY doctors and patients FOR doctors and patients with dysautonomia and addresses both audiences. It informs patients, physicians, family and friends as well as the general community about dysautonomia and is meant to be shared by patients and their physicians. I shared mine with my PCP and my local cardiologist and they both appreciated the information in it. You can find it at the web site with the same name or at amazon. I hope this is helpful and I wish you courage, strength and patience in your quest. Keep up the good work researching and advocating for yourself - you are certainly justified in looking into dysautonomia as a cause for your symptoms. Best of Luck - and please keep us posted!!!!!!11111111111
  8. I used to eat a salty snack before bed and keep a big glass of water at my bedside. I now get weekly IV fluids and no longer need to get up at night, but before the IV's I would get up several times a night - both to drink and to pee!!!!!!!!!!
  9. @Hadders - this happens to me when I exercise too much. Exercise can stimulate a Fight-or-Flight response and cause the body to produce too much adrenaline ( norepinephrine ). In "normal" people this will cause the high HR, raise in BP, increased respirations etc, and after exercise these reactions come back to baseline. In dysautonomia, however, the adrenaline does not get out of the system properly and therefore causes prolonged "Stress Responses" - therefore we are overstimulated. For this reason in dysautonomia normally mild to moderate exercise is recommended, followed by ample rest to allow the norepinephrine levels to come down. Personally I have to avoid ALL rigorous exercise and only do mild activity followed by 5-10 minutes of rest and retreat from stimulation. That means after a short walk or a few minutes on my rowing machine etc. I have to actually sit or liw down in my bedroom, away from noise or stimulation, and simply wait until I am able to get up without my heart racing etc. According to our information site ( and common advice from specialists ) rigorous exercise is not recommended, but rather a carefully balanced moderate exercise regime: Aerobic exercise performed for 20 minutes a day, three times a week, is sometimes recommended for patients who can tolerate it (Grubb, Kanjwal & Kosinski, 2006).
  10. @Chuske - dysautonomia affects the GI tract as well as many other body systems, not only cardio-vascular. In my case in the beginning of my illness, when I was completely unstable, I had severe GI problems. I had GERD, gastroparesis, IBSD ( Irritable bowel syndrome with diarrhea ) and ended up with precancerous esophagitis ( Barrett's ) and duodenitis. This was due to the high norepinephrine levels causing these GI problems, as soon as we found the right med combination for me everything improved, GI and CV symptoms. The GI tract is controlled by the ANS and when we eat the parasympathetic branch kicks in to aide in digestion. By doing so it diverts the circulation of blood to the organs required for digestion and away from other body parts. ( That is why often we get lazy and sleepy after a big meal ). --- When we go into the Fight-or-Flight response the opposite occurs, and the ANS directs blood flow towards the vital organs: heart, lungs and brain. This will draw the blood away from the digestive tract. Normally these reactions occur in balance, meaning that they happen at the appropriate times and are activated by the appropriate triggers. In dysautonomia however they happen in chaos, not in response to the appropriate triggers but often in attempt to compensate for the dysfunction. This will cause both heart and GI symptoms and it can put our bodies under extreme stress, therefore causing the ANS to kick in stronger. I my case this caused high HR, palpitations, BP fluctuations, excessive vasoconstriction, high stomach acid and increased peristalsis ( bowel contractions ), acid production in response to some triggers and low BP and gastroparesis at other times. The article you provided explains this in reverse: the GI symptoms can cause cardio-vascular problems. This is also true - but in dysautonomia BOTH are caused by the dysfunctional ANS.
  11. @TCP - I am truly sorry and can imagine how utterly abandoned you must feel. These illnesses are scary and unpredictable, so not having the support of a knowledgeable physician is tough. In the beginning of my POTS journey I too was signed off by different cardiologists, sometimes it was b/c they thought there was nothing wrong with me and other times b/c they felt they could not help me ( as it seems in your case ). However - a chronic illness such as yours always requires specialist care for MAINTENANCE of the condition, so your GP should definitely send you to another specialist ( hopefully a better one ). It is frustrating that specialists have such long waiting lists but it is not realistic for you to be stuck with a GP to handle your complicated symptoms. I am sure your GP is aware of that. What I have done when I had only my ( albeit absolutely wonderful ) PCP to lean on is drive him crazy with relentless visits and complaints. Soon enough he did whatever he could to get me seen ASAP, and in many cases it worked to get me in sooner. I am not sure how that works in the UK but I think the phrase " the squeaky wheel gets all the grease " is universal. Hang in there and keep looking for an experienced physician, even it takes 6 months. Best of luck!!!
  12. Hello @Mommy1989 - congratulations on the baby!!!! - It is not uncommon to have problems similar to yours in the postpartum months, since your body is experiencing massive changes. It could simply be related to that and may require increased water intake and ample rest as well as a healthy nutrition. ( Well - that will not happen though - not with a little one sucking up all of your time, attention and strength!!! ) In Dysautonomia - or POTS as it relates to your symptoms - the symptoms have to be present at least 6 months in order to qualify for diagnosis. Also - if the HR goes up and goes back down after a few minutes it probably is not POTS, since in this disorder the HR does not go back unless you lie down. In addition to the tachycardia upon standing we experience dizziness, fatigue, orthostatic intolerance, brain fog, attention deficits, sleep disturbance, fainting or presyncope … the list goes on and many of these symptoms also are experienced by any new mother. If your HR spikes continue your doctor will most likely order a Tilt Table Test to determine the degree of your orthostatic intolerance and cardio-vascular response. In either case - POTS or not - an increase in fluid intake and compression hose should be beneficial for the symptoms you experience, especially the blood pooling. Often our HR goes up in response to - even mild - dehydration or low blood volume. This CAN be a result of breast feeding ( not sure if you do ). Increasing salt intake along with the increased fluids is also often helpful, but check with your doctor about that if you are breast feeding. Personally I believe that compression hose could help most of your symptoms. You can get it in medical supply stores or online. If you do get it make sure you get instructions on how to properly measure your legs in order to get the right size, which is essential in making sure they help. Compression hose aids the body to pump the blood back to the heart when standing and therefore can prevent the high HR ( which is a way for the body to pump enough blood through the body ). You can find more information under the information resources tab on the home page of this web site. Be well - I wish you and your baby all the best!!!!
  13. @green - thank you for sharing. I have been helped by breathing exercises often during hyperadrenergic spells and am aware of square breathing. It does work and throughout history ( in western and Asian medicine ) breathing has been proven to calm the ANS, improve circulation and decrease anxiety.
  14. Hello @Clairebun - I am so sorry you and your daughter have to go through this. Fortunately in many cases of dysautonomia in teens it improves after a while. These questions should really be directed at her physician, since members on this forum are not allowed to give medical advice. We can, however, share our experiences. In my case salt was always immediately effective - but often not enough. It is very important to increase both salt AND water together, since they only benefit us together. They can increase blood volume, and usually this occurs right away. There are several posts about licorice root on this forum, you might want to search in our search engine for them. Some people here have found relief from licorice root, however - many report that the benefit is temporary and that it stopped working after about a year. It is good to see an autonomic specialist but they usually have a long waiting list and often require test results prior to the visit. The most important test is the Tilt Table Test ( commonly referred to as TTT ). This test usually is the one every doctor looks for when it comes to diagnosing POTS. You can find more here https://www.dinet.org/info/dysautonomia-disorders-diagnostics-info/autonomic-testing-for-dysautonomia-r206/ https://www.dinet.org/info/pots/pots-guide-hydration-and-pots-r150/ I assume you are asking what you need to watch for in HER? Definitely any fainting spells, palpitations, racing HR, tremors, fatigue … POTS is an orthostatic disorder, meaning the symptoms are triggered mostly when upright ( but many other triggers exist ). In most people suffering from dysautonomia a careful balance of rest and exercise helps, as well as compression hose ( helps with circulation while upright ) and - as you already know - increased salt and water. It is also important to remind her to get on the floor if she feels dizzy or faint, since passing out is common in some types of dysautonomia. If you check under our information resources tab you will find many helpful articles to guide you and your daughter. And under the physicians tab you can find a list of physicians treating dysautonomia patients. I hope this helps to clear up some of the fear and confusion that naturally comes with a dysautonomia diagnosis. Good Luck - there are many people here that are willing to help and can share their experiences.
  15. I just want to clarify that MCAS is not common or present in all POTS patients, just as not every POTS patient has EDS. But there are some people who have both - MCAS and POTS.
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