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issie

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About issie

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    Advanced Member

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  • Gender
    Female
  • Location
    AL

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  1. Depends on if you need the blood vessels to constrict or not. For me, too much constriction makes me worse. I have thicker blood and issues with coagulation so I need to thin my blood and dilate some to help my blood flow. We are all different and have to figure out what our body is doing and why. When I tried the constricting meds, it made me much worse. Issie
  2. There are genetic things that can cause too thick blood. I have Factor VIII and Collagen Binding problems and it's still undetermined if I have APS. I got a positive one time and negative another. I use Vascuzyme by Empirical Labs in the morning and either serrapeptase or lumberkinase at night. You have to pay attention if you start brusing bad you are using too much or if cuts dont clot off fast enough. I also use herbs that can thin blood occasionally. It does seem to help. I also do better to not vasoconstrict internally. I use binders when traveling. Issie
  3. We found I have too thick blood. Instead of blood thinners, I'm using enzymes. It makes a huge difference.
  4. Yes, occasionally I do. Started with silent ones and they progressed to the pain ones. Not often, thankfully, but do get them.
  5. There supposed to be a neurologist at UAB who has started an Autonomic clinic. I hear he is good. Would love to know if anyone has seen him as I just moved to AL and will be starting the doctor hunt.
  6. As a HyperPOTS subtype, I have higher blood pressure too. Absolutely none of the mentioned meds here worked for me. As we further define the subsets, its Interesting that they would still be RXing the same meds tried for other subset types with lower blood pressures. If we aren't deficient in Salt and we aren't losing it.....why add more. I had a nephrologist tell me the normal treatment for low renin and Aldosterone is a diuretic. We dont need to lower either of those (renin or aldosterone) more with ACE or ARB as that part of the system is already broken and too low already. For me, I've found other issues like Collagen Binding Factor and Factor VIII blood thickness issues. Instead of vasoconstricting blood vessels I need to dilate and thin blood. There can be so many reasons for us having HyperPOTS. Also the triad with MCAS and EDS. There is alot of genetics at play here. I've basically had all these things most of my life. Just age has intensified some things. It is generations in my family. I just got results from a study done with my sis at University of Utah and genetics.....lots of genetic mitrochondrial issues. I know we would all like a list and an order to go in. But this is just not possible with the complexity we all seem to have in our own individual puzzles. As for medicine, for me.....still my best thing is 1/2 to 1 50mg. Tramadol and a 10mg Bentyl. I use enzymes for blood thinners and some herbs to help slightly vasodilate my veins. Light Compression to knee when traveling and abdominal binders, still a help. Also have been in treatment for Lyme and CIRS and fungus found in organ biopsy and blood. This has been a huge help. Still treating mostly with enzymes and herbs. Movement is essential with this subset type. We have to assist our heart with pumping for blood flow. Fidget as much as possible and walk, if you can. At least move your legs somehow. Issie
  7. Testing is so "if'y". We did a Western Blot. I came back with positive co-infections. I also had the red circle. But I didn't get tested or treated until years later. Doxy. Did not work for me. My doc had seen symptoms so much and doesn't feel test are accurate - especially if there are autoimmune issues. I see a Naturopath and she uses various herbs in a certain order - based on symptoms and response. We also treated CIRS at same time. I had all test for CIRS. Including genetic testing. All which were very positive. I'm still having problems with both and probably will be a maintenance for the rest of my life. But I'm a while lot better. More puzzle pieces fit together and my symptoms make more sense. (I'm older too - so that doesn't help things.) Issie
  8. Have you tried raising your head up at night to sleep? Many of us find this helps. For me, I also have sleep apenea. Not only obstructive but central. The lack of oxygen can create more tachycardia. Also, mast cells tend to degranulate worse at night. My POTS didn't get better until I addressed MCAS. Some with MCAS have an additional seratonin surge at night and it wakes them up and gives a burst of energy. This usually happens in mornings - but for some reason mast cell issue people have it happen twice in the day. If there are mast cell issues - beta blockers can make it worse. Issie
  9. Nice to hear you're better. I like Hunstville. We looked around up there. But will have to be south of B'ham doing parent care. Maybe later. Nice you found good docs closer by. I don't do typical POTS treatments and prefer functional medicine. As I don't agree with what most docs do for POTS. But I do need to have someone who at least knows about it if I have an Emergency. I'm better too. Been a long road of discovery. Found out I have CIRS and Lyme. Treating those has helped sooooo much. Still have MCAS and issues with EDS. But over all doing better. @derekliz - who do you see? Issie
  10. Which of the two did you like better? You know I lean more alternative and not RX medicine. Issie
  11. @kimbellgirl thank you for your reply. I'm not looking forward to having to get new doctors, as I'm really happy with the ones I have here in AZ. But need to turn the page, with the move, and go with it. My docs here weren't aware of anyone personally. But I've had a few recommended and have a place to start interviewing. Good to know some names and not move there completely unaware if there were to be an emergency. Issie
  12. I'm wondering if any of you are still seeing docs around Birmingham. I will be moving close to there soon and need to find doctors closer to where I will be. Any suggestions? Issie
  13. Are any of you still seeing docs in or around Birmingham? I will be moving there and need to get established with closer to me docs. Issie
  14. I found out I have too thick blood. Have 2 genetic factors that make me lean towards thick blood and blood clots. Also had a positive marker for APS at one time. Explains one reason why I do better to vasodilate and why a blood draw makes me feel better. Also I have genetic markers for hemochromotosis (but don't have) and blood draws lower iron levels in this illness which makes you feel better.
  15. Consider Central apnea. I have both central and obstructive. With central, your brain doesn't tell you to breathe. I have a CPAP that can tell me how many central and/or obstructive apnea I have in an hour. I always have centrals. Sleeping with your head elevated helps. It also helps the brain to drain lymph better when you sleep. That's when that happens. Also, mast cell issues tend to happen to me a lot when I try to sleep. Having my allergy meds right before bed, helps this. The startle thing doesn't happen as much with MCAS controled. Issie
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