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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. Hi @Derek1987 - I am so sorry that you finding yourself in this position and are still doing so badly. Hopefully once you see a specialist at Vanderbilt they will be able to find some answers and treatment!!!!!! - Regarding the SSDI application: I checked with my PCP on what to use and I reported my disabling conditions as POTS, NCS and autonomic seizures. Once they saw the word seizures they concentrated just on that since it is a covered condition. However - it was actually only a SYMPTOM of POTS and NCS ( which are my actual diagnosis ). So they sent me endless questionaires and forms to fill out and I got denied twice. Only after the hearing with an ALJ, who was able to actually ask questions and saw firsthand what I was going through and why I am unable to work, was I approved on the spot. So - you just have to answer the questions honestly and prepare to be denied. Also - my first application I completed over the phone with a SSDI employee assisting me. That way I could ask questions to clarify if I did not understand something. To do this I had to make a phone appointment with the nearest SSDI office. Maybe doing this would be easier for you?
  2. Hello @bombsh3ll - what you describe rings true to me, too. Although I had issues with dysautonomia since childhood I always was able to compensate. But after I had my daughter ( unable to go through vaginal delivery despite BEARING DOWN heavily, needing a C-section in the end ) I slowly developed POTS symptoms until I was no longer able to compensate. The realization that the labor process my have been a trigger is just my own theory, no one has told me that this was the onset of POTS for me but I believe it is a possibility.
  3. Hello @Meemee - please do not despair! If you are just in the process of being diagnosed you have not even been properly treated yet. There are many different medications that have been proven to ease the symptoms of dysautonomia. I myself tried many, many meds but eventually found the treatment that was right for me and today am much better. It takes a lot of lifestyle changes as well, though. There is no magic pill, we have to be good to our bodies in addition to taking meds. Think positive, do not loose hope and be good to yourself!!!
  4. Hello @Derek1987 - the medical conditions you are listing are all SYMPTOMS, not actual diagnosis ( unless your doctor feels they are separate conditions and not related to dysautonomia ). I also advise you to get an attorney if you are having difficulties. I called my local SSI office and had them help me with my initial application. Then they were able to retrieve my personal medical info from my medical record and the process went on from there. But I had a lawyer take over after my initial denial.
  5. @Conrad_hemsley - I am so sorry that you are in such bad shape. Please know that there are many other meds and treatments available. First of all - you should see an autonomic specialist ASAP ( if you do not already have one ). Second - inactivity will worsen all of these symptoms. There are many exercises you can do lying down and also sitting up. Getting moving and standing up - even for short periods - is essential in regaining even a bit of control. PT can be extremely helpful for deconditioning - ask your doctor to refer you to a licensed physical therapist. If you are unable to travel to one they do come to the home if you are housebound, just check with your insurance. -- If Propanolol is the only med you are taking it may not be the right one. You will need to make your prescribing physician aware so he will be able to review your situation and prescribe other meds if indicated. There are many other meds that have been proven to be effective but there is not ONE that helps for everyone. It takes a lot of trial-and-error to determine what helps you. --- Are you drinking fluids? Are you using compression garments to help you being able to tolerate being upright? The longer you stay down the harder it is to tolerate the upright posture - or any exercise for that matter. Please onform you physician of your situation so that he can help you find more effective treatment. BE WELL!
  6. So sorry @Womble that you have been having bad luck and that you have so much on your shoulders. I can totally see your concern! Good idea to also check with your cardiologist since he aslo knows your specific situation. Best of luck and please keep us posted how things go!
  7. Although I had symptoms since childhood - including fainting - I did not get seriously ill until my early 40's. Thinking back I had my daughter in 2004 and had problems since then but I compensated for them. In 2009 I was suddenly full-blown Potsie. The connection to delivery ( C-section ad epidural ) came only much later.
  8. Hello @Womble - I would call your pharmacist and ask this question prior to starting the med. But I would like to make you aware that these types of medications are very effective for the treatment of POTS - I myself take Escitalopram and have no side effects despite taking several cardiac meds . Also - internal excitement and anxiety can contribute to arrhythmias and ectopic beats, so if the medication helps you might find relief of those symptoms. If your pharmacist does not see any contra-indications with your Ivabradine I would give it a shot. I also have been very hesitant to try new meds due to worries about side effects or being incompatible with my other meds but in the end nothing bad ever happened, and had I not tried them I would not be much more controlled today. Is there a risk with trying new meds? - definitely. But you won't know until you take them. I have come to trust my doctors and since your GP and counselor agree ( and checked contraindications ) I think it should be safe to follow their advice.
  9. Hello @Christinvme - welcome to this forum!!! Although I am sorry that you have to be here due to symptoms!!! - I too get the visual symptoms you describe - floaters, blurred vision and the appearance of objects moving in the corner of my visual field. I was told that this MIGHT be due to the BP changes causing less circulation to the brain. Not sure if this is what is happening with you but this was one explanation they decided on with me.
  10. Dear @Lavender90 - I am not able to answer your question but I noted that some of your symptoms ( especially flushing ) in addition to the POTS could be related to MCAS. Have you been checked for this? It is a blood and urine test and is usually done by an allergist.
  11. @toomanyproblems - I think you lost me there!! I need to keep reading your info to understand it all. So - do you mean that a low RBC count but a high MCV ( and slightly high MCHC ) does not have an impact on the "viscosity" ( for lack of better words ) of the blood?
  12. I have seen both cardiologists and neurologists, even a neurologist within a major autonomic clinic. They all missed my diagnosis of hyper-POTS because they only were looking for the typical, most common POTS problems that they were familiar with. Once I did not present the typical picture of POTS they dismissed my - severe - symptoms as something else. In other words: they put a big red bow on me and sent me back to my PCP. Did not want to touch it. But I see more and more progress in the medical community's willingness to accept POTS - a lot of this is because it now gets taught in medical schools, so younger physicians are more likely to recognize POTS. My sister in Germany - who also has my type of POTS - saw several supposedly autonomic specialists and was dismissed by all of them. Then she moved and needed to find a new PCP and - boom! Jackpot!!! He is a young PCP but so open to and willing to learn about POTS that it was like a true miracle to her. Today she is on many of the treatments that I was ordered because he was willing to try them and she is greatly improved. So - you are right, cardiologists may not be the best type of physicians but neither are neurologists, necessarily. It is a open-minded and compassionate physician able to see the whole body-mind-spirit connection of a patient that will be most helpful to POTS patients, no matter what field of expertise he practices.
  13. @FileTrekker - yes, I know what you mean. It is true that the tachycardia in dysautonomia is driven by a different mechanism than other types. I have heard of some patients undergoing ablations for POTS without any effect at all. I also know of one unfortunate individual who agreed to have his sinus node disabled to stop the relentless tachycardia and now is totally dependent on his pace maker. The sad reality is that - still - many cardiologists are just so unfamiliar with the mechanics of POTS and attempt to treat the tachycardia as the CAUSE and not the result of POTS. Or they disregard the seriousness of the tachycardia as perceived by the patient, in other words they wave it off by saying that it is not serious or that it is not important. I have only met a few doctors that were open to the concept of POTS and therefore able to learn from and with their patients. These few doctors ( cardiologists and PCP's ) have been able to help POTS patients - and thankfully accept POTS patients - because of their open minds and ability to treat the whole person and not only One or Two symptoms.
  14. @Outaker - I believe Rauwolfia is the same as Yohimbe which is listed under medications effective for certain types of POTS in the literature.
  15. So - 6 months of IV bliss! And recently I had to skip one of my IV's due to travel and did not get one for 2 weeks. After 10 days I was going downhill - tachycardia, high BP, chest pain returned big time, fatigue and exercise intolerance. Had to stop exercising and mostly stay in bed. When the nurse came on day 15 and hooked me up I soaked up that fluid as if my life depended on it! And - the next day I was much better, although I am now reconditioning myself. That is another fact that many docs do not take into consideration: we work hard to be able to do what we can physically and every flare lands us being inactive and needing to spend weeks to get back to where we were. I have to see my PCP soon to get the fluids reordered to my insurance company. I guess if they ever tell me to stop them I will go back to square one. But this recent experience showed me that in my case I will most likely need fluids for ever, unless someone finds the magic pill.
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