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Everything posted by Katybug

  1. Hi DG, I don't have Celiac but it was suspected on more than one occasion for me. My gastroenterologist ran bloodwork as well as took biopsies to be tested for Celiac when he did my endoscopy (actually all 3 endoscopies that I've had.) But, both my initial immunologist and a rheumatologist have enquired and would have sent me for testing had it not been done already. Even after negative tests, the GI doc had me try going gluten free to ensure there was truly no gluten sensitivity even with the negative test results. Hope that is in some way helpful.
  2. I don't know. We've never tested me while I was having an acute reaction.
  3. I have received both flu and pneumonia vaccines in the last few years. I did not have any adverse effects from either one. (The pneumonia was not to be vaccinated to prevent infection. It was for a vaccine challenge to check how my Ig reacted.)
  4. I have this problem but for me it occurs all year round and randomly. And, it also comes along with crushing fatigue where I have to fight to stay awake. And, I can only warm up IF I don't fight it and go to sleep. Then, when I wake up (usually 2-3 hours later) I usually wake up to a hot flash and sweating and can't get everything off fast enough. It's very frustrating. I can often be found wearing gloves and hats in the house. On the other hand, I am just as sensitive to heat. And I am realizing recently that I can not be in direct sunlight at all. Even on a 70 ° day it feels like I'm melting and triggers terrible symptoms. Bottom line....my temperature control is non-existent at this point.
  5. Hi! Sorry you are having to have a bone marrow biopsy but hopefully it gives you some information regarding your diagnosis. Here is a link that explains the diagnosis and treatment of Mastocytosis. http://tmsforacure.org/patients/mastocytosis_explained_2.php If you take note under the sections "Major Criterion" and "Minor Criterion" it explains what they are looking for in the bone marrow biopsy: either an abnormally large aggregation of mast cells, or, mast cells that are misshapen or showing other abnormalities (that is paraphrased.) They are not actually testing tryptase levels. I encourage you to speak to the doctor that ordered the biopsy or the one performing the biopsy at least a week ahead of time to verify which medications, if any, you need to stop and how many days prior to the procedure. Hope all goes well. Katie
  6. Welcome to our community! So glad you found us!
  7. I am on prescription antihistamines monitored by an immunologist: ketotifen (have to purchase online from Canada) (H1), Singulair (H1), and Cimetidine (H2) (chosen in my case because it has better suppression of skin reactions than other H2). These H1 are said to have better mast cell properties than some other H1. I do also have to supplement as needed for break through rashes or severe nausea with either benedryl or Phenergan depending on which acute problem I'm having. We have also identified certain triggers that I can actually control such as foods and household cleaners. I also have inflammatory issues that no one can truly explain and am having to live on low dose steroids to control this as all of my symptoms (POTS, MCAS, Migraine, joint pain, fatigue) become out of control. The docs say this may be the MCAS or may be something we haven't identified yet.
  8. Many of us with MCAS do not ever get test results that are clearly indicative of MCAS. For me, there just isn't another explanation for my symptoms, odd reactions to odd things, and response to treatment, so I have an MCAS diagnosis based on clinical observations. Here is the most comprehensive paper I have found on all aspects of MCAS. Please be sure to review the tables and figures as they contain a ton of information. http://www.wjgnet.com/2218-6204/full/v3/i1/1.htm
  9. Hi JoJenkins, I had to quit working a while ago so my experience isn't recent. I realize now that I was having POTS episodes for many years before they became regularly disabling. But, I would have an episode maybe once every week to every other week, especially when I was working retail. Interestingly, my fellow managers were not understanding at all when I would say I needed a 15 mins break (retail managers aren't very good at taking breaks apparently) but my employees were actually very supportive. In fact, I know it was visible that I wasn't well because I often had employees say "you need to go sit down, you don't look good" well before i was ready to admit it. Why my peers couldn't see the same thing or show the same compassion is still a mystery. It didn't help that I still hadn't learned to be kind to myself and stop worrying about being perfect 24/7. Once my health got to a point where it was becoming regularly chronically disabling, I was at a different job and I was 10 years older and wiser. My presyncope was visible in that I would become pale, sweat, become visibly shaky, etc.. I had learned not to try to hide it (I'm not sure I was doing a good job at that anyway). I also worked with people who knew I had a superior work ethic, so when I started struggling, they were supportive. And, my boss gave me what was probably the single best piece of advice I have received on this journey. She told me I needed to learn to be as kind to myself as I was to my employees. Wow! No one had ever told me or given me permission to do that! I'm sure I'm lucky to have a had a boss who was that compassionate and insightful. So, I try to pass that advice on when I can because I realize that most of us will probably never have anyone say that to us. It's hard when others don't understand our situation, but, it makes it more difficult because I think a lot of us also feel our own negative feelings and are hard on ourselves internally. We aren't taught to show ourselves the same kindness and compassion we would bestow on others. But we should be. ☺
  10. Hi Lucy, Welcome! Glad you posted! Let us know if you have questions! Katie
  11. Breathing and heart rate are related. If you hyperventilate, it will also force your heart rate up. If you use meditative breathing, you can control your heart rate to some degree. I am able to bring my HR down with meditation which has, on occasion, saved me from passing out at the deli counter. Talking affects your breathing patterns and your oxygen use.
  12. Hi Rachel, Sorry you are having such a rough go of it. Based on your troubles with the soft tissue healing in different circumstances and your joint pain and POTS, have you looked into Ehlers Danlos Syndrome ( EDS )? It is a genetic connective tissue disease with several subclasses. Many of us never knew we had it u til we got older and suddenly had an avalanche of health issues pop up. A good resource to learn about it is www.ednf.org. Hang in there! Katie
  13. I had a bubble study last year because they were looking for a PFO. My migraines had progressed and they couldn't figure out why. As a long shot they looked for the PFO wondering g if I was passing microclots to my brain causing the migraines. Thankfully, I do not have a PFO.
  14. http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm521263.htm I put this article in this forum because it is off topic from Dysautonomia. However, I think it is exciting science and always encouraging to see this kind of progress in treating diseases that have been elusive for so long.
  15. Yes, if I'm standing or walking, talking makes my heart rate go even higher and I will get out of breath.
  16. Also, as an aside, there is quite a list of treatments for MCAS aside from antihistamines. They aren't as effective as antihistamines, and are usually used as add ons to antihistamines , but are you aware of them? They might give you some relief if they are things that your doc approves and verifies they won't interfere with your seizures.
  17. Is there a dentist you like that would consult with your MCAS doc so they can get an understanding of what they need to do to treat your dental needs?
  18. I wish they had psychologists that were that specialized in counseling every specialty! It sounds like it could be very helpful now that you explain their function.
  19. Yes. I've had migraines for years but after becoming a dysautonomia patient, they became more frequent and severe. Finally, last August (2015), it became a permanent state of being. I wake up with it. I go to bed with it. It never completely breaks. Some days it is mild in severity....a 2-4 on the pain scale and I can basically ignore it, a 5-6 slows me down but I've developed enough pain tolerance to keep going, 7+ and I'm down for the count. The weather stills affects the severity but other than that I can't really pinpoint what spikes the severity. Today will be my first day trying the Cefaly device which is a relatively new treatment option. Once I've used it for a while, I will make a post as to how it's going.
  20. Mini goats...I'm a fan of mini goats. I've had enough run ins with full sized to goats to be respectful if their power. Mini goats ate just as bad as full sized goats but can do less damage. So bad, they're cute!! Lol!! I did manage to coach an old student at a horse show yesterday by bumping some meds up for the day (not something I could do regularly). It was a good show and fun.....and then my migraine pain spiked badly half way home and today I'm a shaky mess. It was nice while it lasted. Ancy - I swear the animals are the best practical jokers in the land. They knew just when (and how much) havoc to wreak while it's just you and your Dad. Have fun! Kris - Glad your riding regularly but sorry about the GI stuff. And for the record.....GI psychology is an actual specialty??? I didn't know my GI tract had a brain. Lol!! Hang in there! Draven - I'm sorry you had to get let your horse go. That's really tough. It's good to know where she is though.
  21. Yes, Diamox is a diuretic and the loss of fluids is a concern. My docs and I had discussed Diamox long ago and almost trialed it. But then I found out it was sulfa base and I'm allergic. I think yogini is correct. Please check with a doc or pharmacist as not all meds can be cut up and still have the same efficacy. The passing out must have been scary. This is so very complicated. ?
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