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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. @DizzyGirls - I just had a lightbulb moment: what about a sudden drop in blood sugar? It will cause all of the above and it can occur several hours after eating ( lunch ). It can also be a symptom of gastric dumping syndrome or gastroparesis (both not uncommon for dysautonomia). Just saying!
  2. @DizzyGirls - I was recently diagnosed with low ferritin and took liquid iron 125 mg and I tolerated it really well - no side effects at all. And after 3 month my ferritin came up from 4 to 21! So - if her labs show anemia - the liquid iron might help!
  3. Pistol

    Long term heart health

    To tell you the truth - I used to think the same thing. At the beginning of my dysautonomia I had severe tachycardia and PVC's for years and I always thought that if the heart is a muscle and it has to work extra hard - will it not become bigger like any other muscle would? --- The answer - in my case - was: No. All functional properties of my heart are normal and there is no evidence in echo/ EKG/stress test/ cardiac cath/ labs etc that my heart has suffered any anatomical change at all from the years of "overtime".
  4. Hello @Klotz_Forgotz - wow, what an incredibly sad story! I am sooo sorry about all of your struggles! About the weakness in your legs: I have POTS and often when I get bad I feel like my legs are made from cement. I am disabled now and do very little walking, but when I was still active I would even limp when my legs got that heavy. In my cause it was due to blood pooling, but my HR and BP reflected that. If your Vital signs are normal and you have this weakness/tingling feeling then I would worry that it is something other than dysautonomia. HOWEVER - you are going through such a bad time - I would not be surprised if it is not because you are carrying such a big load around with you. I know that when I get fatigued then my legs feel like lead. I know that you have brought these symptoms up to your surgeon, which is good. Don't feel like you have to be able to return to your previous level of functioning too soon - there is more than surgery that you are recovering from. Hydrate, stay active and do exercises to your level of comfort and stay positive! We are body, mind and soul - one needs the other to be a whole.
  5. Totally agree with @StayAtHomeMom - anemia could cause fatigue and low O2, I am not sure about it occurring at certain times of the day though. Worth a checking into!!
  6. Pistol

    Smoking helps pots?

    I agree with @yogini - smoking or vaping have many serious side effects, I would definitely look into meds with the same vasoconstrictive effects but without the unhealthy side effects. There are numerous meds out there that help POTS patients with similar POTS mechanism.
  7. Pistol

    My left side now goes numb. Grrrrr.

    Sorry @WinterSown - this sounds miserable. But it appears more of a neurological problem the way you describe it - not sure if the EP can help? I am wondering if you should not check with your neuro rather than EP?
  8. @DizzyGirls - it is possible to have low O2, fatigue and nausea all together from extremely low BP. I know you said hers was reasonable when you checked it but I wonder what it is right at the time her symptoms start. Also - have they done a CXR recently? I would definitely get one to make sure there is nothing going on like pulmonary embolism or pneumonia . -- I'm so glad they are checkinh het thyroid more properly, finally! Shows you that MD's have their opinions but in the end they need to treat the patient. Best wishes to all of you!!!!!
  9. Pistol

    Question about chronic pain

    @blizzard2014 - I am sorry about all of your issues. When you see the new PCP: everything should be explained in your medical record. You have a diagnosis, you are seeing a pain specialist, you have been taking these meds for a long time, you have never abused the prescriptions … there is no reason for him not to continue your treatment. But I am aware that many docs now have the right to refuse patients that take many narcotics. Before the initial appointment write everything down so you have all your ducks in a row and can " make your case". I have a B-I-L who is disabled from back problems and he takes pain meds chronically. His pain clinic switches his meds every month - Oxycodone then Percocet. This helps not to build up a tolerance and needing to increase the dose of the meds because the body needs more of it to be effective. He has been on the same dose for years now and the meds are still working ( of course he still has pain but it seems tolerable most days ). --- Don't panic - it will be OK! Let us know how it goes!!!!
  10. Pistol

    Florinef and High Blood Pressure?

    You have to have your cardiologist determine why your BP is high. If it is from vasoconstriction then florinef will make it worse. I have hyperPOTS and Metoprolol did not help because my high HR and BP was caused by vasoconstriction. If you have blood pooling or red/blue feet than you might be suffering from vasodilation ( low BP ). If you frequently experience cold hands and feet than you probably suffer from vasoconstriction ( this also often causes high BP ). I myself would question the cardiologist on why he prescribes the florinef with high BP before I would take it.
  11. Pistol

    My left side now goes numb. Grrrrr.

    @WinterSown - that is exactly what happens to me when I pass out in my docs office. And always I am saying: I'm OK! It happens all the time!" because the nurses always get so upset. I already passed out in my autonomic specialists office as well as at least 10 times in my PCP's office and once at my cardiologist. ( I am not even telling you about the times at xray, MRI, OR, ER …. and always the same response when I wake up : "I'm OK- did I scare you?" It's automatic! … I hope they can get you back to your usual soon - best wishes!!!
  12. Pistol

    Heart Rate Increase

    The only thig I can tell you is that we all have out unique little quirks. In my case I used to go WAY up in both HR and BP when standing but could level out when walking. I do believe it must be because of the muscle pump. I still am better walking but cannot tolerate standing, however - if walking I will pass out if I do it too long. I am sorry that you are having to do the " " "number-game " - meaning you have to worry about the numbers rather the symptoms. But I am sure that if you have an experienced autonomic specialist he can tell you what is what?
  13. Hi @Pippie yes, that sounds pretty typical for POTS. I get nausea and diarrhea with tachycardia and usually have diarrhea right before passing out. When the sympathetic NS kicks in then it affects your whole body, not only your HR. I have IBS as well and it is caused by POTS. I also have severe GERD from it and - as of recently - gastroparesis. The good thing is that ( although we cannot be cured ) there are many things that help these symptoms. Once you are on the right combo of meds for POTS - and you are on your way if you are going to Stanford - you should find some improvement. Wishing you the best - don't give up hope!!!!
  14. Pistol

    POTS Diagnostic question

    Hi @Potsie1990 - as far as I understand the criteria is sustained HR increase within 10 minutes. I am glad that you are getting autonomic testing - they will know how to interpret the TTT and hopefully other tests. As with many other POTS people - a TTT is NOT the golden standard, a good autonomic specialist will interpret your SYMPTOMS before the TTT results. I had 2 TTT's and they both showed something different, the last one was even misinterpreted by the cardiologist doing it. This should not be the case for you since you are going to an autonomic clinic. Best wishes - keep us posted!!!!
  15. Pistol

    My left side now goes numb. Grrrrr.

    One thing I have learned since getting serious symptoms from POTS: any chronic illness will make us more aware of changes in our bodies. They may just be regular age-related changes or they could be serious problems - but we always seem to notice even the slightest change. I think it is because we have experienced that even small things can turn into a flare with dysautonomia. That is actually a good thing: in my case I am at my PCP as soon as I get the sniffles or anything that could cause me to go into full-fledged POTS action. I think that is called being pro-active? --- Wishing you the Best!!!!!