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Pistol

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About Pistol

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    Advanced Member

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  • Gender
    Female
  • Interests
    gardening, my family, reading

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

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  1. I second what @Delta said - more exercise is extremely helpful but probably also calls for n increase in meds - it always did for me. Be well!!!!!!
  2. Yes - my IBS and GERD are directly related to POTS in my case, as per gastroenterologist.
  3. I had a flu shot about 8 years back and had a POTS flare immediately after it - I do attribute it to the shot. I haven't had one since.
  4. @sjoh197 - Thank you for the detailed story, it sounds that you already found some answers. I have a few questions: Since you participated in research - was the visit paid for by insurance or was it covered by Vandy? -- Also: once all your tests come back - will you go back for a follow up to discuss treatment options? I was told that they are big in diagnostics but not so much in follow-up treatment - is that true?
  5. @joshrandall - I am sorry that you are doing so poorly. I have an inverted T-wave that is harmless. In my case it is in one lead and it is chronic. It is concerning if it is a sudden change - but any doctor will be able to tell the difference. You are describing a really stressful time you are going through right now - is it possible that the stress and worries cause some of the flare symptoms? In my case when stressed out I get ectopics, chest pain, trouble breathing, stomach aches, nausea, diarrhea, irritability, insomnia …. I hope all will go well in your job. Be well!!!!!!
  6. I DID IT!!!!! I went to my daughters dance recital ( drive to and from, rehearsal, restaurant and recital = 11 hours in all ). The recital was over 2 hours long, in a huge college auditorium cramped full, loud music, flashing lights, applause - you can imagine. With my eyes only focused on my special dancer I made it through and am glad that I did. I had been dreading it for weeks, afraid of not being able to be conscious through the whole event, but I did - and I am so proud!!! And my daughter was sooo happy to finally have me there with her! To all of you fellow heroes: Salute!!!!!!
  7. @Aud E - I have been dealing with terrible GI problems from POTS, including GERD, IBS with Diarrhea and bloating. I am currently much improved in all POTS symptoms, including the GI, since receiving weekly IV fluids. I have been taking Escitalopram for years and it never had a negative effect on IBS for me.
  8. @peresphone24 - based on your post these are the questions I would ask: - What is the abnormality found in my EKG? - What is my diagnosis? - What do you recommend I do/ take to lessen my symptoms? Since most of your testing was negative or inconclusive there probably is not much he can do, you will have to just find out about the EKG abnormality nd address the low BP.
  9. @FaithAlways - I used to faint several times a day, including taking seizures. I take the following precautions: 1) Learn to listen to your body. I used to fall out of chairs without warning and obtained many injuries from syncope because I could not tell it was coming. I have since learned to listen to my body and can tell when a spell comes on, which gives me time to drop to the floor to prevent injuries. 2 ) Always walk close to a wall so you can lean on it or slide down to the floor when passing out instead of hitting something on the way down. 3 ) Get up from a sitting position slowly to prevent dizziness and triggering an event. 4 ) When I am anywhere in public and feel syncope coming on I squat on my heels - this often slows down the onset of the episode and gives me time to ask for help. If you learn some counter-maneuvers such as the ones that have helped me you may not need 24/7 supervision. I also have a medical alert system in my house so I just have to push a button if I pass out and get hurt. Best of Luck!!!!
  10. Dear @CFrampsMom - have you checked out the Information Resources section of this site? There is a video " Living with POTS " and a guide for family and friends that may be helpful. It sounds as though she is getting all of the proper testing in order to get diagnosed and once all the tests come back treatment options may become more clear. As in how to support her - as a mother of a 15 year old daughter with asthma and syncopal spells I can only tell you what I have found helpful: be honest, research as much as possible. be her advocate at doctor appointments and always reinforce that none of this is her fault as well as that many teens with POTS improve rapidly with proper treatment. Best wishes!!!!!
  11. @jvherenow - in my case I also ended up in the hospital regularly for infusions for emergency treatment. Eventually we went to weekly infusions but found that the slower the infusion was given the better it was tolerated and the longer the effects lasted. In my case it is not the AMOUNT of fluid I get but the LENGTH OF INFUSION that helps. So - 1 or 2 litres over 2-4 hours was less helpful than 1 litre over 8 hours. I am receiving weekly home infusions of 1 l LR over 8 hours weekly through a port for the past 8 months and had very few syncopal episodes and NO hospitalizations/ ER visits since. ( used to be in hospital over night for fluids every 6-8 weeks ). I have also found that LR helps me better than NSS - I do not retain fluid or get high BP or headaches from it as I do from NSS.
  12. @jvherenow - I am so happy that you are finding IV fluids helpful and are approved to get them regularly scheduled!!!! One thing I - and many others - have found helpful with ANY problems from the infusions ( such as irritability in your case ) is to slow the infusions down even more. I went from 2 hours to 4 hours and now 1 l over 8 hours for maximum results, they seem to last longer with the slower infusion. Most home care agencies require a long term access for home infusions - that is why I have a port. If you live in a city you may be able to get them at an infusion center but you would have to be there for the entire time. I was told by the surgeon that put my port in that any infusions that need to be given weekly justify a port insertion since frequent peripheral IV's pose a risk to your blood vessels.
  13. I am not sure - I personally have taken Carvelidol for many years without any side effects but we are all different. You should ask your doctor or the pharmacist at your prescribing pharmacy.
  14. I disagree with this statement. The solution or medication infused does not increase the risk of infection - it is whether the access is used long-term or short-term. Every time a port is accessed it poses a risk of infection - chemo, TPN, blood products or fluids. Also the sterile technique used to access the port ( or other access ) poses a risk for infection. The longer it is accessed ( as in TPN ) and the more often it is accessed will expose you to infection.
  15. Well - over the weekend two female friends boasted about their recent accomplishments: one changed her front brakes and one ran a marathon. I certainly celebrated with them but also thought: as a POTS Sufferer - what small victories could I celebrate? ( I am assuming that everyone here knows that mechanical labor and ANY form of speeding would be counter-productive ? ) -- So - here are MY small victories: I cleaned my fridge Friday, I cleaned my shower today, I WILL attend my daughters dance recital. And - on top of that - I have only been reconditioning from a flare for 4 weeks. Anyone who knows what it is like to become bedridden from the simple act of brushing your teeth will know that THIS IS VICTORY!!!!!!!
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