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Everything posted by Katybug

  1. I see a neuro-opthamalogist and I have 20/20 vision but was having problems with blurriness when I would read for a while and then look up at the tv across the room, if I read for more than 15 minutes it would suddenly become blurry, etc.. He diagnosed me with convergence insufficiency and prescribed a $60 computer program that you do every other day for 7-8 minutes for several weeks. It helped tremendously. He said I may periodically have to redo the computer program. There was a prism type tool he used to slide up and down in front of my field of vision for each eye that triggered it to happen right in his office. If your opthamalogist doesn't know what it is (I don't think it's terribly rare or unheard of), my doctor is Dr. Eric Singman at Johns Hopkins if he/she will contact him for information. I also have amaurosis fugax (temporary blindness) in one eye at a time which seems to be caused by sudden changes in my bp and orthostatics behind my eye, mostly when I'm laying in bed and roll from one side to the other or stand up.
  2. Some people with POTS experience blood pooling in their abdomen instead of or along with pooling in their legs. That's why some POTS patients wear abdominal binders or compression stockings that are full tights.
  3. My GI issues are at least 90% related to my mcas. I spent nights on the floor of my bathroom because of it. Everyone was convinced it was gluten. I went staunchly gluten free for 4 months with no improvement. I had just started working with an immunologist at the end of that. He did food allergy skin testing and blood testing. The blood tests said I wasn't allergic to anything. The skin tests said I was allergic to everything except for fish, chicken, and beef. The immunologist was practical and recognized that was not a liveable diet. He had me quit all grains including corn and rice and all nuts and seeds. After 6 months, he had me add one thing back at a time. It turns out rice is my nemesis. I'm fine with gluten, nuts, and seeds. Then we did the same with fruits and veg except I didn't stop them for 6 months. I just started by only eating one fruit, then each week, I would add another fruit or veg. We discovered things that I had eaten all my life with no problems, had suddenly become a problem, like grapes for example. I still have lots of food I can eat. We cut about 5 foods out and I am so much better. The process is long and tedious but I don't miss my bathroom floor at night. ?
  4. Nymph, I'm so sorry. I had an episode of fecal incontinence early on in my illness and it was the one moment I wanted to go crawl under a rock and never come out again. It was on Christmas morning and thank goodness I was at my mom's. I was expected at my dad's and had to call and say I'd be late. He pressed me on why and when I finally shouted at him what happened, I think he wanted to find his own rock to crawl under. I continued to have bowel urgency until we started getting control of my diarrhea and abdominal pain. First, it was artificial control with meds, and, now it is a combination of avoiding foods I am allergic to (although not in the classical food allergy sense) and meds.. I do have MCAS and finding the right MCAS meds was important. The combo that most people talk about didn't help me. I take Cimetidine, Ketotifen (which has to be ordered via Canada online), and Singulair. Figuring out the food issues was a pain in the neck but so worth it. I'm finally at a place where I still have 4-5 bowel movements a day (my immunologist would like it to be 2-3) but they are normal. I do have occasional minor urgency but I don't feel like I will actually lose control. I might have diarrhea 1-2 times per month and I believe that there still might be a food out there we haven't identified. So, there is hope! Don't give up! Work with your doctors. Tell them this is a big stressful problem and that you need their help! I know it's tough to talk about but they've heard it before and they can help! Take care, Katie
  5. Maybe physical therapy (not exercise but for pain relief type treatment) or acupuncture?
  6. I get in bed between 10-11pm. I fall asleep sometime between 1:45 and 4:30 am. Occasionally, I don't sleep at all. If I'm aloud to wake up on my own, I usually sleep 7-7.5 hrs from whenever I fall asleep. If I have to be awoken by an alarm, I am usually a zombie. And if I do use an alarm, it has to be a graduated alarm that starts out very quiet and gradually increases in volume. If it's just a sudden loud noise, it sets off an adrenaline surge and I'm ruined for the day. Ironically, I also have daytime hypersomnia. I can fall asleep easily and quickly any time from 11 am to 6 pm. I will sleep for about 2 hrs if left alone. Sometimes the hypersomnia is almost like a "sleep attack" where I become incredibly cold and feel like I will fall asleep even against my will. My body will start to collapse but it's different than passing out/syncope....it's sleep. However, I am not diagnosed as narcoleptic because during the daytime sleep studies, while I fall asleep much faster than the average adult for the designated naptimes, I don't reach REM sleep in the alotted amount of time. It's like my circadian rhythm has been turned upside down. We've tried all the sleep hygiene techniques and they aren't effective for me. Sleeping pills give me night terrors.
  7. Things I do to help my chronic pain issues are: ice, heat, TENS unit because I tense my muscles in reaction to joint pain and then end up with referred pain, warm Epsom salt bathes, and I take a tumeric and ginger supplement. I hope they get this figured out for you soon.
  8. Has anyone used a topical probiotic for skin problems such as acne, rashes, rosacea, eczema? I (and my dermatologist) have been fighting a rare rash, pityriasis lichenoides chronica (PLC), since July of last year. All the literature says it can be hard to treat and we are going through the list of known treatments methodically. But, my skin is now becoming acne prone (which I've never had a problem with) as well but conventional acne treatment isn't working either. I'm now on my 4th round of oral antibiotics since November (3 for the PLC, 1 for the bad URI and fever in Dec.). All the topical treatments for PLC have failed. We're trying light therapy next. But, in the meantime, I came across some literature on topical probiotics and it makes sense to me. So if anyone has any experience, I would love to hear it.
  9. I know many of us are on one of these drugs due to GI issues or as an H2 for MCAS treatment. There is a link to the original research article published in JAMA embedded in this article but it goes to a PFD and I couldn't figure out how to link the PDF. http://wellnessachiever.net/acid-reflux-drugs-may-cause-dementia-neuropathy/
  10. I carry an epi pen although I haven't had to use it. It is epinephrine so I was told it will make me tachycardic if I have to use it. Beta blockers blunt the efficacy of the epi pen so when I was on a bb, I was told if I had to use the epi pen, I had a shorter amount of time to get to the hospital to get additional help because of the blunting effect of the bb.
  11. For non-fasting tests, my doc told me to drink a 32 oz. Gatorade within the hour before the test and then to continue drinking as much water as I can both before and after. I also make sure I eat 1-2 hrs before a blood test so my stomach isn't full but my blood sugar is stable. Laying down also helps. For fasting tests, I fluid and salt load the day before even more than a regular POTS day. I also ask if drinking water the morning of the test is going to affect the test. Some tests you can't have anything but some you can have water but they'll only figure that out for you if you press the question. Sometimes the doctor who writes the order will know the answer. I also keep hard candy in my purse for a quick sugar fix and then also something like a KIND bar that has both carbs and some protein if I need it. (I've also rescued a few other patients with my candy stash! Lol!)
  12. It doesn't affect me either way as far as calming or making me anxious. But, it is eye opening to see that FitBit thinks I am in the "fat burning zone" every waking minute of the day. I could only wish that were true (the fat burning part....the HR part is accurate.)
  13. Have you talked to the doctor about possibly taking the short acting version of metoprolol so you can take it more often? Also, there is pharmacogenetic testing available that helps people to understand if they are slow or rapid metabolizers of certain medications. I had mine done through YouScript/Genelex. I am a rapid metabolizer of some medications and they therefore have no effect on me or only work for a very short time before they are cleared from my system. Knowing this can allow a doctor to help find a more effective drug. It is no longer considered experimental science but it is newer so a lot of docs haven't used it, but, it's worth the question.
  14. This paper has a section on the variety of tests that Dr. Afrin looks at in diagnosing MCAS since tryptase is not reliable or easy to catch in an elevated state: http://www.wjgnet.com/2218-6204/full/v3/i1/1.htm
  15. It's common for dysautonomia patients to be sensitive to a lot of things that were just fine before. Also, a decent number of dysautonomia patients also have MCAS (mast cell activation syndrome) as a comorbid condition. I have MCAS. I have many true drug allergies but also have odd reactions to meds now that are not true "allergies" in the medical sense. Some meds I'm very sensitive to at even non-therapeutic levels while others have zero effect on me at all, good or bad. I also developed food sensitivities to many foods I've eaten all my life....rice, grapes, bananas, cilantro to name a few. Rice is like death for me. I also react to things like drastic changes in ambient temperature, for example, going from 20° outside into a 70° heated house or office. I will flush and break out in hives and have adrenaline surges. If you want to know more about MCAS, here is a paper that is very comprehensive. The tables and figures contain a lot of very important information. http://www.wjgnet.com/2218-6204/full/v3/i1/1.htm
  16. There are quite a few old threads that talk about pacemakers. If you do a search, you can just use the search term "pacemaker" and be sure to change "This topic" to "Forums" and it will pull up a list of the discussions.
  17. That's similar to what my adrenaline surges feel like if I had to describe them in detail. I don't feel the panic so much anymore now that I know what is happening. But the feeling of an acid like substance washing through my limbs and chest is a pretty good description of what it's like when I have a big adrenaline dump into my system.
  18. I'm glad to hear you were able to find a solution to this problem! It must have been stressful.
  19. I feel the effects most when the pressure is actually changing. If we have rain for 3 days, I will feel awful as it becomes cloudy/starts to rain. But, then, after about 12 hours of rain I will level out. Then, when the storm rolls out and things start to clear, I will feel lousy again. I definitely have less of an issue when the weather is moderate and not too hot or cold but I think that's more to do with my temperature dysregulation than the barometric pressure.
  20. I don't have exactly the same thing. But, the lead up to my migraine pain in my head usually starts with severe nausea and often includes a bout of diarrhea right around the time my head pain starts. I don't necessarily have pain with the diarrhea. I don't believe the GI symptoms cause my migraines though. I think they are part of the migraine symptoms. The GI symptoms as well as my head pain are often relieved by taking Maxalt (rizatriptan) which is a migraine rescue medication. The meds you mentioned are preventatives, not rescue meds. Have you tried any of the triptans as a rescue med? Regardless, what you're saying doesn't necessarily shock me. The GI tract and whatever goes on during migraines are definitely linked.
  21. Here is a link to the American Heart Association Journals explaining POTS. It's fairly comprehensive and makes no mention of heart attacks even when explaining hyperandrenergic POTS. Maybe this will help settle your fears as this organization would likely mention any concern of heart attacks. http://circ.ahajournals.org/content/117/21/2814 I have definitely had POTS for 9 years (almost 10) although I think I had milder symptoms that I was ignoring for several years before that. I worked 70-80 hours a week in a high stress financial industry environment and I trained horses for competition as a secondary job/hobby. Competitive riding is an extremely high aerobic activity as well as a strength building activity. I also hiked rough terrain every weekend. My dog (a working breed) and I walked a minimum of 1.5 hrs/day split into 2-3 walks. I continued these activities for the 1st 3 years of my acute awareness that something was wrong with my health. I continued the hiking, dog walking, and riding to a lesser degree for 3 years after that. There were times prior to getting my diagnosis that I actually questioned if I should call an ambulance because I thought I had pushed myself to a heart attack or stroke (because I would have neurological symptoms too). But the episodes always resolved. My health issues have worsened over the remainder of those years and I have had to stop most of those activities. I am just now finding some meds that are promising and have a plan in place to slowly resume my physical activity. But, it's complicated and the meds are not without issues and limitations. I don't feel normal....I just feel like I can give it a go, again. I am realistic in my expectations and know that I will likely not regain my full function, and, that I have to be very careful in my approach or I will cause myself a setback. If I overdo, I still get the heart attack /stroke type symptoms. I'm not trying to deny or diminish your feelings. I've had them, too. I just know that for me, being able to talk to myself rationally that my symptoms were consistent with my POTS diagnosis, what the research said I would experience, and what my fellow POTSies experience, helped me to remain calm during even my worst episodes. And, that, in turn, helped reduce some of the symptoms I experience during a severe episode. I also draw on my knowledge of meditation, and even more, meditative breathing. Meditative breathing can be done at any time even when you aren't doing a full meditation . Meditative breathing has been proven to help people who have progressive heart failure. My POTS neuro specifically encourages use of meditative breathing as it calms the sympathetic responses. This may be something you want to learn. Also, a great book to get started with meditation and mindfulness is, "Wherever You Go, There You Are", by Jon Kabat-Zinn. It has short chapters that are easy to read (great for the brain fog that comes with POTS). It also has a little "everyday" meditation exercise you can do at the end of each chapter. They are meant to be things a busy person can work into their life so they don't have to dedicate specific time for meditation. They are also things that are easy for a POTSie to do. Counting your breathes, counting your steps, visualizing your favorite vacation, etc.. I'm so glad you are talking about this. I think a lot of POTS patients go through what you are going through right now. I hope this discussion is helping you and know that it is probably helping someone else too.
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