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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. From what many of us here have experienced - yes, it is definitely worth pushing for a diagnosis if you suspect dysautonomia. But for most of us this is a long, frustrating and sometimes infuriating process and you should definitely see a specialist in the field. On our physicians listing ( you can find it under the physicians tab ) has specialists in the UK listed, maybe there is someone you would feel comfortable seeing.
  2. @Jwarrior77 - have you brought this up to your doctor? He may want to do some blood tests, and there are medications that help. I believe that excessive vasodilation could cause inadequate circulation to your organs due to low BP and if this happens often could be damaging. Your doctor should be able to determine if you need to be treated.
  3. @Jwarrior77 - do you feel faint when this happens? Does your HR go up or your BP drop?
  4. @Clareb67 - I have hyperadrenergic POTS, Raynaud's and Prinz-metal angina, all caused by excessive vasoconstriction. When I am in a bad flare I start to shiver terribly, my teeth chatter, I start to yawn ( an attempt of the body to increase oxygen intake ) and my hands and feet become very cold. I also often have severe chest pain caused by spasms of the coronary vessels. I am not sure if this is what you are experiencing but in my case it is from dysautonomia.
  5. Dear @tmrj21706 - does he have anxiety or is it adrenaline related? I have hyperPOTS and when my adrenaline spikes and I go into fight-or-flight response it looks like anxiety but is actually caused by POTS. I do have a prescription for Ativan to use when needed but it has never been helpful in those flares. In my case rest and withdrawing from all stimulation can help for these episodes. However - I have found that preventing them is better than trying to stop them, meaning I try not to become overstimulated in the first place. And - of course - my POTS is somewhat improved with medications and other treatments. -- Do you have a specialist that treats your son? Have you asked him/her what else to try? The following link deals with teens, POTS and anxiety. You may find it helpful. I wish you both the very best - hang in there!!!! https://www.potsuk.org/managing_anxiety
  6. Yes, they have in me. I used to get tons of PVC's and if they came in bunches or every other beat and this lastet for a long time I would get dizzy and lightheaded. Fortunately mine are controlled with medication and I rarely get them anymore.
  7. @jeff_jefferson2 - IMO yes it can. As a former nurse I have witnessed many episodes like that in others and none of them were diagnosed with POTS. The combination of fear or excitement and getting up from lying flat for a long time can cause the orthostatic process to take longer and cause syncope. I have POTS and NCS, the latter causing syncopal episodes just as you described but it can happen to normal people as well.
  8. @Friedbrain - yes, unfortunately this is a POTS reality for most of us. I love to play Monopoly or Skippo with my family but after no more than 10 minutes I am wiped out and have to lie down. Even reading or watching TV, prolonged computer time or ( sadly ) even listening to the radio or music turns into an stressful experience comparable to being exposed to nails on a chalkboard. I could sit quietly on my porch listening to the twitter of the birds in the trees and suddenly it feels like I am sitting in the middle of a construction site!!!
  9. Dear @Friedbrain - the only way to determine what is going on is by following your physicians advice. A monitor is a reasonable diagnostic tool for what you describe. If you or your doctor think that your low HR could be linked to dysautonomia you might want to consider an autonomic specialist. At this point you should follow your doctors advice and see what the 48 hour monitor shows I had MANY of those when I first became ill with POTS and I WISHED it would have been a slow HR - that could have meant a pacemaker. So - please do not get too worried - your docs seem to be on top of it!!! Hang in there.
  10. @yogini - I do not own one myself but have heard very good things about them. Personally - I would invest in a good one. Sleep is important!!!!
  11. Not sure what you are asking - it is a decision you need to make with your doctor!
  12. @POTS23- yes, what you went through is pretty much text-book for all of us. I went through the same thing - years of seeing ignorant and misinformed docs, having to find on my own that I had POTS and requesting referral to a specialist - and then finally over-the-moon just because now my symptoms had a real name! Unfortunately this is reality for most of us. Thank you for sharing your story - I wish you strength and patience in dealing with our ever-changing symptoms. Be well!!!!
  13. @MissMermaid I agree - testing is easy. I had 2 gastric emptying studies done, it is used to determine how fast/ slow your stomach processes and empties food. In my case my ANS dysfunction goes to either extreme, both with cardiovascular and GI symptoms. In my case I have both IBSD ( when I am hyperadrenergic ) and gastroparesis ( when my sympathetic system withdraws ). When I have gastroparesis symptoms I get bloated, sluggish and fatigued, my abdomen feels always "full" and am very nauseous. I get extremely full after even one bite of food. What helps me in those times is a diet without raw fruits or veggies ( except for bananas ), frequent small bites of soup or soft foods and instead of drinking water I sip broth, soymilk ( dairy makes me feel worse ), coconut water etc. One thing that I do is this: I shred a cucumber, salt it and let it drain in a colander. Then I drink the green water - salty, mild and nutritious! I am sorry you have to go through this - I understand!!!! If your doc recommends to try the diet and it does not work - I would make an appointment and go back. You do not have to wait that long, they need to know that you are sick despite the dietary changes. Good Luck!!!
  14. @p8d - In my case ( and my sister's as well she also has POTS and receives infusions ) we have noted that with fast rate of infusions, like the usually recommended 1 l over 2-3 hours, we CAN become hypertensive, develop shaking episodes from freezing and the positive effects of the infusion are very short-lasting. We bot need it to infuse AT LEAST over 6 hours. This in the past has caused me to have to go to the hospital for them since I could not take an ER bed for that long. Now that I have a port and do home infusions I do 1 l over 8 hours and that does the trick without fail. I just had a set-back in POTS due to an extremely busy 2 days of helping a neighbor in need ( not being able to rest when triggered ) and my BP was high, I was extremely fatigued, cold hands and feet, irritability etc. I had to wait for Monday for the nurse to come and access my port and voila! - all is well. BP went from 156/102 to 103/70 in less than an hour and I could finally stand long enough to do the dishes. Today I am like a normal ( relatively speaking ) human being!!!! If you have more questions - PM me !!!!!!
  15. @bunny - last year I needed an impression of my teeth for a mouth guard. I gagged so hard it sent me into a seizure followed by a full-blown POTS flare for the rest of the week!!!!
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