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Everything posted by SnowDrifter

  1. I have CSS. My doctor described it as this: Your brain has 2 modes. Normal, functioning, every day mode. And fight-or-flight mode. Fight or flight mode heightens your senses and lets all signals in from the feeling of your clothes on your skin to the whirr of the fridge in the background, etc. Works great if you are fighting for your life, but having that much info streaming in at once AND it being amplified.... It's very fatiguing.
  2. It's just a way of describing your brain's way to adapt. You experienced this the first time you rode a bike, when you learned to walk, etc. Your brain can adapt and change. We just need to coax it into adapting and changing in a way that is helpful. Whether you realize it or not, your brain is like a little kid whining at you and you give in. So it learns that if it presents that it doesn't like the stimuli and you remove yourself, it will only strengthen that. If you force it to adapt and change, it will gradually get better
  3. I used to get this. It ******. Try this: Leave the earplugs at home. Go out in public, stay out even though it *****. Push through your symptoms as much as you can without causing you to crash to the point where you can't function. And periodically go to a quiet, comfortable place. Say... Every hour or two, and do slow, diaphragmatic breaths. You aren't to starve yourself of oxygen, but you'll find that even 6 breaths per minute is easy. Breath with your stomach - push it out. No puffing up your chest Slow, deep, complete breaths. P.S. you can't do this on your stomach. I like to do it sitting or reclining. On the couch or something, but a car seat works well. While doing that, imagine yourself in a calm, relaxing place. Like a beach. Think of the most vivid imagery you can - the sand in your feet, working it's way through your toes. The feel of the mist filled ocean breeze, etc. And/or go through your body, joint by joint, muscle by muscle, tensing for a few seconds, then releasing and feeling yourself go limp. I like to do this with my eyes closed. Once you are done that (10-15 mins), return to your normal activity. The idea behind this is that you aren't giving your brain a reward system by staying away from things that aggravate it. Instead, you are using the concept of plasticity to cause your brain to adapt and, eventually, re-write the neural pathways. It took me about a week and a half of doing this and now I have zero problems with this stuff anymore It won't be easy, but don't think about your symptoms either. Acknowledge they are there, but move on. Don't dwell. Do something to get your mind off them. And certainly don't talk about them. Again, because of the idea of neuroplasticity.
  4. Daily schedule is as follows: 8:00 AM - Morning stretch/walk/wakeup 8:30 AM - Set and review goals for the day 9:00 AM - Class on various stress/symptom management techniques. We analyze what goes on and how things are cyclic in nature. For example how POTS causes inactivity and inactivity causes POTS. We also review how to break said cycle. At the end we will have "relaxation" which is where we either put on a relaxation CD or calming music and do controlled, meditative, diaphragmatic deep-breating for 15-20 minutes. For me this is what really helps - it does an awesome job of calming the autonomic nervous system 10:00 AM - Physical therapy. We work out under the supervision of the staff. There is a high emphasis on cardio and reconditioning 11:00 AM - Lesson on coping strategies. Similar to the 9:00 AM class but more emphasis on battling what happens and dealing with shortcomings in a healthy, productive manner. We do this one with our parents too 12:00 PM - Lunch 1:00 PM - Continuation of the 11:00 program. 2:00 PM - Recreational therapy. This is where we go over skills like time management - how to keep ourselves busy and avoid the 'ol couch. We also plan evening activities and our weekends 3:00 PM - Another relaxation/ meditation session. We also review our goals that we created in the morning and make new ones for the evening. We will also do tai chi/yoga. Once more with a meditative emphasis 4:00 PM - Recreational therapy. This is where we do hands-on projects. Helps get other parts of our brain engaged. And, quite honestly, is a pretty fun way to end the day. 5:00 PM - Done. Onward - evening activities. Like going for a walk, dinner, pool time, etc I'll go into a lot more detail when I do a writeup in a week or so. But that's the basic overview
  5. Because I had some pots symptoms but that wasn't everything. Sitting vs standing made no difference. And I was sitting when my original symptoms started. So POTS didn't quite fit
  6. Symptom wise I had: Fluctuating body temperatureSensitivity to stimulation such as light, sound, touch, temperatureBrain fog even while sittingExercise intoleranceHigh sensitivity to most drugs (namely the side effects)Heart palpitationsFeeling either jittery or like it was hard to move - feeling like I am in a vat of cold honey lolWeaknessLoss of appetite and weight lossConstipation and diarrhea (sorted out via diet)Restless legs when coldPoor memory/concentration
  7. I haven't been on in a while. Been busy lately. So I thought I'd fill you all in on what's going on 5 weeks ago I flew out to the Mayo. Had an abolute slew of tests done, which all came back normal except for some vitamins were off and blood pressure was low. Namely vitamin D was low and so was my ferratin. A combination of being indoors/diet caused that. Reason for the tests was that I was seeing a doctor who had a suspicion of what I may have - central sensitivity syndrome. There is no specific test for it - it's a diagnosis of exclusion. Ruling everything else out first. So... I was enrolled in the PRC (Pain Rehabilitation Center). It's a 3 week long, 5 days a week + activities on weekends program. I'm kept busy from the time I get up to the time I go to bed. I just completed week 2 and to my surprise I'm feeling GREAT. No meds or anything. Just some salt tabs to raise my blood volume (kept those up along w/ salty foods. Tilt table test is negative now ) and vitamin D since it was low. I went for a hike today. First time in over a year. I've been driving around, going to the movies, hanging out with friends. I feel normal - I have my life back. I don't feel perfect, but I feel 90% of the way there. I'll share all I can with you all about the program and what helped me - hopefully you can give it a try since a lot of it is lifestyle/meditation (should be within forum rules right?). I'll type that up later when I get a chance since it is a LOT of information. As in: take me a few hours to type. So I won't be able to do that for another week when I have the chance to sit down and hammer things out. Anyhooo...... I just wanted to update you all of my progress. If you have the time and insurance will cover it, I'd highly suggest giving the PRC a shot. If anyone cares to know, I was seeing Dr. Kevin Flemming at the Mayo in Rochester. He's the one that started me down the path of central sensitivity and the treatment
  8. Throughout the day mine is typically in the 105/55 range. Its definitely lower in the morning when I first wake up though. And in the evenings when I am laying down it will go to the 100/50 range I don't believe it's anything to worry about
  9. Past week has been no bueno.... Good news is I found a doc that thinks he knows what's causing pots. He won't say but he wants to some some tests

  10. Yes. It's kind of interesting how I found him. I bring up POTS to pretty much everyone. Sooner or later you find people with connections (6 degrees of separation, heard of it?). Eventually found out there was a doctor who lived in my neighborhood.He knew some folks, and they all suggested a couple psychiatrists. But they all had one name in common and he's the guy I went to.
  11. Its a couple hours of various mental tests that test Visual memory, written memory, speaking, reading, comprehension, reflexes, spelling skills, reading skills, math, ability to think on the fly, and various combinations
  12. Got my neuro-psych testing done today. Guy said that I don't have anxiety or depression - it's not psychological. Which is a huge help because as you all know, it can be an uphill battle sometimes with certain doctors. That is all
  13. Since upping my dose of Zoloft to 25mg(I started with 1/4 tablet since I'm usually pretty sensitive to this stuff) I've had quite a bit of trouble getting to sleep. I go to bed at 10:00 and I toss and turn and can't get comfortable. Sometimes I can half fall asleep - where I'm almost dreaming, but I'm still awake. But I generally can't fall asleep until 2-3 in the morning. Does anyone here take Zoloft? Were you able to get any relief from this?
  14. That's weird that you were getting such a severe reaction from it. I'm getting some side effects from it but nothing like what you are describing(Headache for the first 3 days, tingling, ringing of ears, insomia, all of which subsided after a few days). I guess not every med is for everyone
  15. I've just been started on Zoloft. Side effects aren't very enjoyable, but bearable. They go away after a few days for me the. Do a google search on ssri and dysautonomia. There is some info that suggests that they may help.
  16. My parents just brought this up. Has anyone tried this? I guess I'm having trouble believing that turning oneself into a pin cushion can have any positive effects. Maybe it's placebo? I don't know.
  17. My apologies, Corina! I've edited my post.
  18. So they are trying to dismiss it as simply a mental issue? Ugh...
  19. Well, air is less dense at that altitude. That means less oxygen. Maybe there is a way of finding out whether it is the decrease in pressure or the decrease in oxygen that's exacerbating your symptoms? The oxygen part should be pretty easy if that's the case. But I can't think of anything for pressure
  20. Just wondering.. Does anyone on here play it? I'm usually either playing it or watching netflix on my bad days
  21. My experience with was one of those places was less than spectacular. All they did is run a variety of fairly run of the mill tests - blood workup, balance, mri, etc and a tilt table. Sent me home saying I had pots. But the official report said I had anxiety. Frustrating since I don't fit the typical demographic. I'm a 19y/o male with no previous history or triggering events. And my symptoms started out of the blue - at the snap of a finger when I was sitting down. In the coming months several doctors have agreed that POTS is a symptom of whatever I have, not the cause(including the doctor I was assigned to).
  22. I have talked to the doc about it. He dismisses it then starts bringing up that I'm just having a panic attack because I'm checking my heart rate. It's like... Well... No... What would you do if you felt a funky feeling in your chest and felt like you were going to pass out? I think any normal person would get a bit spooked. I had a really bad episode of that today. Heart rate went up to 194 then slowed wayy down(didn't check it, but it was low). Then my vision got dim and I couldn't hear. Ears were ringing for about an hour after. Going to bring up the issue again with the doc when I go in for a follow up in a couple weeks. Sinus beats or not, there is no way I can believe that's normal. I'll keep you all posted
  23. For me: I'd rather live with having to buy some ecigs/gum/patches and deal with those consequences than have to live with pots. While it's not perfect, at least you can function. But that's just me. If you have issues with it the last thing I would suggest is to start something and get yourself hooked again
  24. I'm sorry you have to go through this. From the bottom of my heart. I really am. I will admit I'll get some bad episodes that make me freak out a bit too. It's no fun. I keep reminding myself "It's just pots, Chris. How many times have you gotten yourself worked up and got over it a week later?" PM me if you ever want to talk. I've gotten pretty good at talking myself down from panic attacks
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