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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. Pistol


    Hi - I have hyper-POTS and suffer from instabilities that cause both hypotension ( and I pass out from low BP ) as well as hypertension ( and I take seizures OR pass out from high BP ). I have passed out in Walmart, Rite Aid, Doctors offices, Hospitals, churches, residences, streets, gardens, bathrooms, restaurants … I have both POTS and NCS ( neurocardiogenic syncope ) and I take many cardiac and dysautonomia meds which have limited my syncopal episodes greatly. Please see a specialist or - if not able to see one soon - a cardiologist knowledgeable in treating POTS as soon as possible to prevent further episodes.
  2. Pistol

    Delayed Gastric Emptying questions.

    @blizzard2014 - when you say Activia - do you mean the dairy product with that name? If you have the type of GI problems you describe you might benefit from refraining from dairy since dairy in ANY form can cause GI intolerance. So - please DO see a GI specialist as soon as possible, they can advise you on what dietary restrictions to implement as well as order the necessary testing. Take care of yourself - many of your questions should be presented to a medical professional!
  3. So - I love cooking but cannot stand at the stove, that means frying anything or cooking more than 1 item at a time are out. Although I am disabled from POTS I still call myself responsible for taking care of cooking and minor cleaning for my family. My best and most functional time is in the morning but dinner is in the pm - so here are a few tips for still being able to make great homemade meals: Salads are the worst because there is so much prep involved. My husband does all the shopping so he brings home 2 different types of lettuce. I wash and cut them up and put each in a sealed plastic container in the fridge - they last 5-7 days and no more chopping! ( I also wash ALL veggies in one sitting so I can just grab what I need, saving a step. Meats get bought in bulk and my husband cuts everything up into chunks or slices, flattens the chicken breast, cuts up an chicken into pieces etc. Then we vacuum seal everything. When I need something I take it out as needed already prepared. ( the prep gets done on a good day and is often my only activity that day but it's worth it ). Hamburger gets browned and drained in bulk then frozen in on pound helpings. Chili or spaghetti sauce are so much easier when that step is already done! - I also prepare meatballs in one big batch and freeze them ( 10 at a time ). Chicken can be pre-baked and frozen for tacos etc. I save all veggie scraps or meatscraps in freezer bags, even bones or chicken carcasses. When ready I make stocks in my instant pot, cool, strain and freeze in freezerbags in 2 cup helpings as well as ice cube trays - for gravies or recipes that require small amounts of stock. I find that many slow cooker recipes can be done with frozen meat. If I am planning a recipe that calls for a lot of prep I cut everything up the day before, sitting at the table. When I bake bread I knead the dough while sitting on the floor - it requires less effort. That is all I can think of right now. If anyone has any tips for cooking despite POTS - please share!!!!!
  4. Pistol

    Delayed Gastric Emptying questions.

    @blizzard2014 - do you take fiber? My GI specialist recommended it to me for general GI health as well as - ironically - helping with diarrhea from IBS. And I hope you see a GI doc? The issues you describe sound severe enough that you should seek medical treatment.
  5. Pistol

    I made bread from scratch.

    @WinterSown -that is ONE great-looking loaf! I always bake my own bread when able ( when I can stomach the kneading activity ) and I love - absolutely LOVE- baking bread. Now - I read tht you also bake good cakes - I am an absolute disaster when it comes to cakes or cookies etc. Bread seems more forgiving - let it sit and it does the trick!
  6. Pistol

    Fainting In Sleep

    Hello @Minnie, welcome to the forum. I am very sorry that you are having such a bad time. The feeling of almost passing out is most likely presyncope, that means you are about to faint. I have that often but I also faint a lot. Are you able to check your HR or BP when that happens? If you could get those measurements during those events it would be very helpful to your doctor to see what is going on. Have you asked one of your doctors about dysautonomia? Maybe one of them will consider it and check you for it. To help with that you should write down your BP and HR during the events as I already mentioned. If there are any abnormalities they might do a Tilt Table Test which helps to diagnose POTS. Of course I am not saying that I think you have it ( I do not want to add to your worries ) but if you do they can find out. -- I too get "attacks" similar to what you describe as panic attacks but in my case they are caused from high norepinephrine levels and I need to lie down in a dark room and wait them out. --- I very much hope they will find some answers for you. Don't give up - you are definitely not alone and there are many people on this forum who share your symptoms, dysautonomia or not. Best of luck - keep us posted on your journey!
  7. Pistol

    Delayed Gastric Emptying questions.

    I have to eat a low-acid diet for IC and GI issues. I cannot tolerate most fresh fruits or veggies so I steam everything and it is so much easier to digest. I drink the steaming water since any lost nutrients will be in there ( tip from dietician ). And I constantly nibble crackers or pretzels for salt but also to avoid an empty stomach since that makes me nauseous. And Zofran to the rescue!
  8. Pistol

    It's been a looong 6 years...

    Hi - I have hyperPOTS and what has helped me - other than my meds - is this: do what you can when you can ( I am most energetic in the morning, so my chores get done then ). Rest as soon as you feel symptoms ( they are different for anyone, in my case it is palpitations, chest pain, leg heaviness, cold hands/feet, tremors … ). DRINK FLUIDS and EAT SALT! ( If OK'd by your doctors since hyperPOTS causes hypertension). … Do not mess with your meds - and be careful with new meds, many POTS patients are very sensitive to medications. Many of us get overstimulated easily - make sure you can retreat when that happens. -- Most of all: keep your head up! Be calm when you get hyper and have docs who will take endless calls if needed - there are so many scenarios that can happen with hyperPOTS when we are not sure what to do! Best wishes and - be well
  9. Pistol

    Back from BIDMC

    @StayAtHomeMom I am not sure. We have hyperPOTS and we both benefit from this kind of med - I take SSRI and she takes SSNRI. It somehow balances the neurotransmitters ( serotonin being one of them ). IN ADDITION to cardiac meds we have found great relief of dysautonomia symptoms that - if left untreated - could contribute to the general instability caused by dysautonomia. This is a med that was prescribed by our autonomic specialist and has been proven to help with symptoms with some patients. Thankfully we both are receptive to this medication. --- I agree with you - kids make life worth living but make POTS so much more disabling. I have a supportive husband who cares for my 13 year old daughter in all the ways I can't - yet there are still so many things only MOM can do. And of course MOM always will - even if she has to go and pass out in the closet after she did them!
  10. Pistol

    Elevated ANA?

    I have generalized joint pains with swelling and abnormal knee arthroscopy ( showed inflammatory tissue ) as well as chronic fatigue ( believed to be caused by POTS ). I also run elevated temps at times for no reason. WBC is low, RBC is low. ANA and CRP are normal, ESR is high. Based on the ANA and CRP I am not auto-immune. I just want to let you know because even with symptoms and some abnormalities in labs there is no evidence of auto-immune disease.
  11. Pistol

    Salt Rooms?

    Where I live we have a salt cave/ spa but it is mostly recommended for respiratory issues. I do not believe salt will help unless taken orally.
  12. Pistol

    New Diagnosis?

    I have POTS and neurocardiogenic syncope which is the same as vasodepressor syncope. They are both dysautonomias. NCS was diagnosed based on the symptom ( syncope ) and in my first TTT my HR sped up, then dropped to 50 and as a result I promptly fainted. In my second TTT I did not faint but my HR went op to 150 and stayed there. So now I have them both and both cause fainting but you can have POTS without syncope.
  13. Pistol

    Back from BIDMC

    My sister has dysautonomia with tachycardia and high BP. She was really sick and almost lost her job. Since she started Wellbutrin she is sooooo much better, almost back to normal ( she takes Coreg and Diltiazem for BP ) I hope it will work for you too.
  14. Pistol

    methyl folate & b12

    I take cyaconobalamine 1000 mcg IM. What is the difference between that and methyl- B12?
  15. Pistol

    New Diagnosis?

    I am a highly symptomatic POTS patient. If I would stop my meds before a TTT I would certainly test positive. However - if I would receive IV fluids before the test I might do just fine. IV fluids should - in my opinion and in my own case - be considered as medication. As a matter of fact: I have to list them on my list of as needed meds.