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Hippopotsamus

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  1. 2 weeks ago I switched from a smartphone to an old school "dumb phone" that just calls and texts, so no internet, email, or small screen scrolling. The quality of my sleep has improved dramatically and I would say that my anxiety has decreased by half, and this is the only thing I have changed. I wanted to pass this along in case it could help anyone else.
  2. @Shepard1 Interesting that you say it was 3 months till your symptoms hit. It was also about 3 months between my flu shot and my first “dysautonomia type episode”. Went to ER for POTS attack with the HR up and down/hot then chills/teeth chattering stuff. Never had it before that, they thought I was just dehydrated (yup!) and IV fluids resolved it. I am pro-vaccination too, but I think some people are predisposed to dysautonomia then something triggers it. Growing up I had episodes of lightheadedness after standing and in the shower but that was it.
  3. Can u please send to me too? Especially if in MA. Thanks!
  4. I just quit hormonal birth control and started the non-hormone IUD a couple months ago. I felt some hormone fluctuations the first 2 months, much heavier periods, my skin breaks out more, and I’m more emotional, but I feel like my POTS is a little better. My heart rate has been more normal and I feel less chest pressure which is hard to describe. Anxiety maybe a little worse? I always felt like birth control evened out my emotions tho.
  5. Feeling like crap no matter what you eat is miserable. The fear about what kind of reaction your body is going to have is such a huge source of stress too. I definitely understand. I think that histamine has been a large trigger for my symptoms as well. You might look into DNRS? I’m using it to work on my food intolerances, a lot of other people have had success with it? People who were down to 5 “safe foods”. I used to be down to about 10 when I was at my worst. And I was sensitive to food temperature, volume, too much protein/fat at once at one point too. I also had bad pots episodes after seafood, nuts, wine, tomatoes, berries, medications, things I have had all my life. Just a couple of bites then the “feeling of doom”, lightheadedness, tachy, shaking, then out of it for days. But many people have totally recovered and they eat anything. It works on the part of your brain that deals with the fight-or-flight and trains it to have normal healthy responses instead of sending out the alarm signals to the rest of your body any time you eat something. Our symptoms are absolutely real, and it is because our stress response system has become dysfunctional somehow. My food sensitivities appeared at the same time as my POTS and I am working on healing both with this program.
  6. Thanks everybody for your responses. I have been hesitant to get one (got shot every year before developing POTS, but since my diagnosis have felt like I’m generally more sensitive to things, have had abnormal responses to things I used to tolerate), but I might be brave and get one. I work in a pharmacy and have sick people coughing on me all day! And I got the flu last year. It was two weeks of awfulness.
  7. The first period that I had after switching was pretty heavy, but I just had my 3rd period, and it’s getting lighter. I was quick to jump on the pill bandwagon too after giving birth (I developed POTS during pregnancy), and was worried that my period might make my symptoms worse. But I feel so much better without the hormones. I wasn’t expecting that.
  8. Hello, I wondered if anyone else saw improvement after stopping hormonal birth control? I just switched to the non-hormonal IUD and my Fitbit has my daily resting HR down about 8-10 points. It goes lower when I’m sleeping (into the 50s) and I’m not in the yellow (fat burn) range as often doing normal activities.
  9. @WinterSown thanks for sharing about milk working as a helpful electrolyte solution. I used to drink it all the time growing up but for some reason had stopped. When I started drinking 2-3 glasses a day again I started to notice a reduction in my fatigue and headaches that I wasn’t getting with the Nuun tablets.
  10. Anyone get an intense ache in their tongue or palate that came and went? It also feels like my jaw seems fatigued easily. I started having this in June when I was under a lot of stress moving and picked up a viral infection. It went away and now is back in Sept since I picked up a cold from the kids. It is not constant, sometimes more intense after eating, sometimes happens even if I haven’t eaten. Feels like a cramp along the sides of my tongue that follows it down my neck. But some days it is just awful. My PCP wondered if it was an allergy but it happens on/off antihistamines, no matter what I eat. (She’s useless anyway). To me it seems more of a nerve or mechanical issue? My body does not seem to respond normally to anything anymore, so could it just be a bizarre dysautonomia type reaction to a viral head cold?
  11. @JoeJack101 Yes the DVDs take some time to get through. But all of the information really helps you get a grasp of what has happened to your body, how neuroplasicity works, how you can actually affect your brain chemistry to heal your body. Even after the DVDs you continue learning as you begin practicing, and from the experience of others on the community forum. Part of me thinks that there are many aspects of modern life that make us more prone to developing dysautonomia, chronic illness that primitive people did not have? A good question.
  12. Hello. I was wondering if anyone else had issues with this or has found something to help it. I have POTS and often feel panic after eating. I have never had a textbook anaphylactic reaction to anything (no throat closing, severe rashes, facial or tongue swelling) although I have had shortness of breath and chest tightness after eating. I have had all negative IGE blood tests. But I have become very nervous about eating. I avoid all alcohol and caffeine and cut back on sugar and carbs. Any suggestions appreciated. I currently take metoprolol, Claritin and Zantac. (Thought I would try the mast cell meds just in case, not making much difference I think).
  13. @Bluebonnet08 I did improve in some aspects pretty quickly after delivery, I remember being surprised 7 days postpartum that I was able to walk around a hospital cafeteria and take a shower standing up. Previously I was only able to walk very short distances and pretty much avoided showering because i got too dizzy. In the few weeks after delivery I forced myself to go for walks around the block, and it was sooo hard and uncomfortable (breathing felt so strange, constant headaches) but I knew I was really deconditioned by that point and it was the only way I was going to see improvement. Then I started the beta blocker and was able to do even more. By 6 weeks post partum I was driving again and taking my older daughter to summer camp. I felt exhausted and was still short of breath but I could function enough to take care of myself and kids for the most part as long as I paced my activity. I still have the sudden attacks but they became much more infrequent and less severe after delivery. (Only every couple months). I started taking Claritin and Zantac during my pregnancy because I had allergies & heartburn and have had some of my more severe attacks when I was not on those meds. But I have had them while on meds too. So not sure if there is a mast cell issue. Caffeine is the only definite trigger I have identified. The only things that I found to help those last few weeks of pregnancy were moving as little as possible, laying only on my left side, drinking an ensure and a glass of water before getting out of bed in the morning. And wearing knee high support stockings from the time I got up till I went to bed. I had totally lost my appetite (and was worried I was reacting to some foods, I still struggle with this, allergy tests negative but if you get an attack after eating something you get scared to eat it again). But when I forced myself to get more nutrition, tried to get enough daily protein for my baby, it helped me to feel a little better too. The anxiety was so bad, I had to try really hard to distract myself from all of the totally abnormal sensations I was experiencing. The more I focused on them the worse I felt. I can remember how bad it was. How a month felt like an impossible eternity. I would watch the clock and be glad that just a couple hours had gone by. But it definitely didn't stay that bad. And new babies are a lot of work but they are a wonderful distraction. I was too focused on my daughter to think about my symptoms. I kept the changing pad on the floor and slept on the couch so I didn't have to do stairs until I got stronger.
  14. @Bluebonnet08 My first attack ever happened at 21 weeks with my second pregnancy. Then around 28 weeks they began to happen weekly, then daily with presyncope and orthostatic intolerance by 32 weeks. From 32 weeks until 38 weeks was the worst for me, I think compounded by anxiety because I had no idea what was happening, no previous history of POTS. I think I remember them slowing down near the end. I could not figure out what triggered them because sometimes they were after eating and other times in the middle of the night or early am.
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