firewatcher

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About firewatcher

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  1. Don't know about this bloodwork

    https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/8159 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!
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. Benzodiazepines

    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.
  10. Dysautonomia and benzos

    I have been on and off of Klonopin for several years at a time. I saw a good improvement in my symptoms while taking it. I tapered off slowly several times for autonomic testing at Vanderbilt. The last time I tapered off was due to changing primary care docs and HER stigma against the drug (its an "anxiety drug" so you have to have anxiety...) I have not been back on it for several years, but I do wish I still had it for flares and stressful occasions. If I finally find a doctor that will work with my on my POTS and not instantly go to the "anxiety" label, I will probably try to restart it. There is a difference between addiction and dependence. You can be dependent on a drug (like insulin for diabetics) and NOT be addicted. You and your doctor (if you trust them) have to weigh the options for long and short term consequences and determine if the possibility or risk is worth the reward. For me, the tapers were very gradual and slow (over 8-12 weeks.) My only withdrawal issues were a reoccurrence of the symptoms that the drug improved.
  11. No idea where to go from here

    toomanyproblems - He prescribed Celebrex in addition to Zyrtec, Zantac and Allegra. Some MCAD patients cannot tolerate it, but we are thinking that I might have prostaglandin issues instead of histamine issues. High dose antihistamines (H2 blockers) and Zantac (H1 blocker) seem to be a first round treatment option, but MCAD can be a super tricky thing.
  12. No idea where to go from here

    Sorry you have this, but I am glad you are here. I've had my diagnosis (hyperadrenergic POTS) for over 10 years and honestly, I'm still trying to get a handle on symptoms and successfully deal with every day. I heartily second Yogini's suggestion of going to an Autonomic Specialist (Vanderbilt, Mayo, Cleveland Clinic, etc.) Most doctors will not know what they are looking at, they just don't see enough of us. Even with really common disorders, like migraine, there are few real specialists that understand the disorder (maybe 2 per state unless you are in a MAJOR city.) Take a deep breath, and get started educating yourself: what helps and what makes it all worse for starters. Keep a symptom log and get every one of your labs and medical records you can get your hands on and organize them for yourself. Talk to the doc that dx-ed you with dysautonomia and see who they suggest you see, why did he dx you with it? Lifestyle and diet changes can be good, but many are highly personal (what is good for one, may not be good for you.) You will likely know what your bad habits are already. I recently kept a food diary to see if anything I was eating/craving were migraine triggers, surprisingly there were several (ketchup, eggplant, cooked tomatoes...) I don't eat them anymore and I am doing better. My neurologist and nephrologist agreed to let me try a Mast Cell Activation Disorder treatment drug and honestly, I'm better now than I have been in 10 years. Amitriptyline was an awful drug for me too, Klonopin was great, but I stopped taking it because of the stigma (I did not have a good primary doc and she went down that old anxiety road.) If you really want to get into the thick of it, search PubMed. This is the super library of almost every medical article ever written, it has a search function where you can type in any symptom and condition and read almost every research article for the last 100 years. Good luck and good health!
  13. am I making too much out of this

    Odors and chemicals are tricky things. I have had very frequent migraines that severely heightened my sense of smell to painful levels. NO ONE who does not have this hyperosmia can truly understand. It will be work for you, but you should be able to find an oral surgeon or dentist to help. I have been to the same dentist for over 30 years and they know my quirkiness and even keep specific unflavored/unscented oral products and equipment for me. My neurologist has been a big advocate for me on this type of thing as well. Good luck! BTW, I just found out that I have an allergy to Chlorhexidine and its used in MANY healthcare and dental settings. Chlorhexidine is also in disinfectant mouthwash and rinses. It can give susceptible people incredibly nasty chemical burns and anaphylactic reactions. You can get skin tested for this to confirm the allergy!
  14. Dizzyape, I am glad you had a "good" appointment! I have had only good experiences at Vandy. Dr. Peltier (neurology) is excellent there and I have seen her several times. I hope you find both answers and improvement.
  15. As awful as you've read it could be, remember that it will be controlled and monitored by people who actually care and know what they are looking at. They actually want to know as much as you do. My experiences at Vandy have all been good ones. I hope they get you answers!