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About firewatcher

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  1. firewatcher

    B12 Deficiency and POTS

    I was also tested several years ago and found that my B, D and ferritin levels were low. I'd been on multi-B supplements before and felt worse with an increase in tremors. This got MUCH worse for me after B12 injections, so I quit. My doc supplemented vitamin D too (at prescription levels) and I ended up having worse migraines. I also took iron to bring my ferritin back up. I'm not sure if the deficiencies are "chicken or egg" with us. Are they low because of POTS or do we have POTS because they are low? I feel better off of the vitamins. Who knows? I dunno.
  2. firewatcher

    Does Melatonin Really Help You Sleep? I found that melatonin helps me with sleep and POTS. Beta blockers and other drugs suppress melatonin secretion, as does bright light at night. I've seen an article that states many POTS patients also have Delayed Sleep Phase Disorder (circadian rhythm disorder) but I am unsure where they get that info.
  3. firewatcher

    Verapamil side effects

    Yes. Verapamil is known to cause constipation. I have always had slow transit constipation and Verapamil made it much worse. I take Miralax every day and it helps tremendously. You can adjust the "dose" until you get the right amount for your bowels to work.
  4. firewatcher

    Doctors in Georgia/Alabama/Florida

    I see Dr. David Tian (cardiologist) at Piedmont Heart Institute. I have only seen him twice, so I have very little experience with his POTS troubleshooting (mine is fairly well controlled right now,) but he does know more than any other doc I've seen in the past 10 years...other than Vanderbilt. If you can travel, go to Vanderbilt. University of Alabama, Birmingham has the Mitral Valve Prolapse Center which also treats POTS, but I have never been there.
  5. firewatcher

    Happy Christmas

    Merry Christmas!
  6. POTS is not diagnosed by a blood pressure drop, if it drops it is considered Orthostatic Hypotension. I have Hyperadrenergic POTS and my BP is low when lying down and high when upright. I am a martial artist too, and working out currently around 4-5 hours a week (my HR gets into the 180's during forms/kata or sparring and I am 46 years old.) I completed 7 months of the Levine POTS exercise protocol and still have high heart rates and POTS.
  7. firewatcher

    Don't know about this bloodwork Looks like it could be anything from allergies or asthma to MCAD, lupus or hyper IgE. Definitely needs to be interpreted by a doctor who knows what they are looking at! Good luck and keep us posted!
  8. I was dxed with "POTS with hyperadrenergic tendencies." My supine BP is usually 90/50, sitting goes to 100/70 and standing can go to 170/150 or 99/88 depending on the moment. I get headaches, flushing, tremor, cold extremities, shaking and grey-outs, but have never fainted. My HR goes from supine 40 BPM to 120+ BPM on standing and 180+ with exercise.
  9. firewatcher

    Exercise heart rate

    My HR skyrockets with exercise too, well above what max HR should be for my age if you believe the 220-age=HR equation.
  10. firewatcher

    Gastroparesis question

    Are your headaches worse recently? This spring I had exactly the same thing happen, I started feeling full but then it progressed to outright, almost constant nausea. My migraines were very bad at that time as well. My whole GI tract just stops when they flare up.
  11. firewatcher

    Did my diet do this?

    Your diet can influence your symptoms, otherwise the knowledgable POTS doctors would not suggest some of us increase our salt intake. Vegan, vegetarian, low-carb, raw or paleo diets each have people that do well on them. Other than nutrients and vitamins and minerals, you also have to look at your own "microbiome" or gut bacteria. Apparently new studies are showing that there are several different types of microbiome and that one gut bacteria type may not be healthy in other populations. The consumption of meat or not can effect your gut critters positively or negatively and that can effect serotonin and all the neurotransmitters, most of which are in the gut. Probiotics can help, but they have to make it all the way to the gut. Fecal transplants are finally a thing, but they are creating mixed results. I don't think there is enough real information about what is healthy for "everyone," look at how the recommendations for eating eggs has changed during our lifetime. I'd probably suggest that you eat what makes you feel the best and has does the least damage to the rest of you! BTW, I've been vegan, vegetarian and omnivorous over 45+ years. My POTS is better if I avoid high histamine foods though.
  12. firewatcher

    New Member--Question about Working

    Hi Big Guy, I don't know if it helps, but "from the outside" I lead a "normal" life now. I was diagnosed 11 years ago. I have always been self employed, so my work dwindles when I have flares. Two years ago I started an exercise protocol for POTS. It helped. My goal was to go back to Karate (which is really good for POTS since it is super-core intensive and not sustained cardio) and I have, but it isn't easy. It hurts a lot more, I get dizzy and can't spar long or be as active as the rest of my classmates, but I am doing it. If I pass the next two belt tests, I will be a black belt this time next year. My last cardiologist was very negative about me exercising. He said "POTS patients can't have physical goals," and "why do you want to do karate, you don't seem like an angry person." I did not go back after that appointment. Monday, I saw another cardiologist who I hope will help me. It is possible, and I keep hoping and coping with what I have every day.
  13. firewatcher

    recently had surgery

    Yes, I can relate. I had surgery 2 weeks ago and had a lot of the same stuff. Change is bad for POTS. Hoping we both settle down, heal and feel "our normal" soon. BTW, percocet was awful for flaring my POTS symptoms. I did better with the pain than the drug.
  14. firewatcher

    Dysautonomia and benzos

    I had severe daily headaches, tremors and palpitations. Stimulation like movies or crowds or super busy days were just too much. Klonopin helped with the "overstimulation" aspect and the headaches and tremors. The headaches got worse and I gave up on a lot of social things because it was just too much. A lot of this has improved with my current Mast Cell Disorder meds, but the tremor and overstimulation are still a lot to deal with...I'd really like to take my kids to a movie.
  15. firewatcher


    I started Klonopin after my diagnosis. It helped. When I discontinued, I saw a return of the symptoms that I was taking it for. Any drug can be a tool, off label or on. You have to trust the prescribing doctor and weigh the risks vs. benefits. If I trusted my doc, I'd still be taking it.