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StayAtHomeMom

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About StayAtHomeMom

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  1. That's where I am as well. My doctors don't seem to care why just throw medicines at me.
  2. That is what I am doing. I have watched people spend years trying. I figure the more diagnosises I have the better I will be. Keeping appointments and seeing the doctors help your case too. It shows you are actively having issues.
  3. Have you tried any other medications? Maybe if you can get the dizziness to ease you can be upright and it may stop your cycle. Before I knew what I had a doctor recommended a half a tablet of dramimine (the motion sickness medication) and that helped so much with the dizziness. Luckily that is not one of my symptoms the last 2 years. But that first year it was bad.
  4. Sounds kind of like me. I am currently in the process of ruling out hEDS. ANA keeps coming back negative even though it runs heavy in my family (my mom and 2 aunts). My kids and I are pretty flexible so I think it is time to rule it out. If we don't have it then I plan on fighting for a serum catacholmine test (the urine one came up normal twice).
  5. Mine started after a brief run. Haven't felt right since. I suspect I have had it longer though. And my 16 year old was just diagnosised as well so that helps support my theory. I had assumed I felt the way I did because it was a normal response to smoking (started when I was 15). High HR, occasional heart beat skips, heart palpitations (didn't know that was what I was feeling), and exercise intolerance. Even the lightheadness upon standing. It was liveable. Never thought anything of it until it got bad, and then the dizziness and breathing issues started. That was all 3 1/2 years ago. Just turned 30. I think for some people surgery can trigger it due to laying down so much, or depending on the surgery, making the body mad and malfunction. Finding an underlying cause can help with piece of mind and treatment. But most people don't find it.
  6. I get visual disturbances as well. Kind of freaked me out at first but it has become less, especially since my lightheadness has eased quite a bit. Make sure they check for autoimmune. Considering the joint pain and swelling. If you can manage to take a picture of your hands I would. Raw hard data is the best way to "prove" your symptoms. The specialists in dysautonomia are more apt to believe symptoms but other doctors like to dismiss them. Good luck on your next appointment.
  7. There are some naturalist doctors that do take the whole body into consideration, but insurance doesn't cover them. I agree with your statement though. I think that is the hardest thing to deal with.
  8. 2 months for a new patient appointment isn't too bad. Due to cancelations it took almost 4 months for my son to get a new patient appointment. Even when I scheduled it, it was 2 months out. My specialist is alway super busy and behind. He has a nurse practitioner now, so that has been helping out a lot. It is definitely worth the wait. When you have a doctor that doesn't look at you like you are crazy, it is the most wonderful feeling in the world.
  9. Not sure about chest straps. I use a Garmin. It can be viewed using a smart phone, computer, or tablet.
  10. I am better in the morning and progressively get worse throughout the day. No matter what I am doing. Most people with POTS seem to be the other way. Maybe something to do with your nervous system just having a hard time during those hours?
  11. I got called for jury duty in the beginning. Good news was I was started on the medication and was called for grand jury. I enjoyed the experience immensely I had a few dizzy spells but I was able to do it. You should be able to call and get excused.
  12. It sounds like you are very lucky. Having those interested doctors makes the most progress. Good luck on your test results.
  13. I haven't dislocated either, that I know of. I will "tweak" things but they usually don't last longer than a few days. How long have you had POTS?
  14. As far as I know the discoloration is the symptoms of blood pooling. I don't get it a lot either. I will when I take a shower but that's it. And I have been told I have livedo reticularis (as well as my son) so maybe that's all my discoloration is.
  15. I agree with a previous post about the metoprolol and melatonin. I also listen to audio books to help me sleep. Someone with a soothing voice. My son is currently going through the same thing. Just make sure you are going to bed and getting up about the same time. Your body should eventually get used to it. A fan might help too.
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