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Everything posted by StayAtHomeMom

  1. I would ask the doctor is there is any imaging that can be done to be sure it is repaired. If you do a search for CSF leak and POTS it is a common occurrence and an easy fix.
  2. Did they correct your CSF leak with surgery? If not and you still have one, that can cause POTS as well.
  3. Out of curiosity, why is keto hard for you now? I wonder, is it possible your stomach issues started after you came of keto?
  4. Yes, please keep us updated. That may be something that would be worth pursuing. Chiropractic hasn't helped a whole lot for my POTS symptoms, but personally I would be willing to try anything non-medication that may help. Good luck!
  5. I want to start with congrats on your weight loss. I am currently doing keto to lose weight as well (recommended by my mother in law). I have noticed that keto has helped my GI symptoms unexpectedly. Not sure why but it has been a pleasant side effect. Second, it sounds like you have a lot going on and it may be hard for the doctors to pin point what is causing what. Surgery and bed rest can cause POTS or similar issues. It can be difficult to be patient while the doctors sort everything out. How long have you been on the metoprolol? How long before you get the results from your TT
  6. In my research it seems that HyperPOTS seems to be genetic (which to me would be the underlying cause) but I have had 2 urine catacholmine tests done both negative for hyperPOTS. Plus my BP is steady and normal. My son's will drop a bit sometimes but not all the time. I was hoping it had something to do with his growth spurts. When he was 12 he grew 4 inches in 6 months, but he hasn't grown in over a year and his symptoms are getting worse. Looking back to my teenage years a few of my symptoms started when I was 12. And steadily added throughout my teen age years. I had both my boys befo
  7. I take metoprolol which is a cardiac specific beta blocker. Talk to your pulmonologist and see if they can suggest something. My pulmonologist is who recommended the metoprolol. I don't have asthma but my main symptom is breathing issues and the propranolol they started me on made it worse.
  8. That would be an interested experiment. I wonder if different frequencies and different decibals would cause the trigger. I never thought about it. I may have to try that.
  9. Basic background: I have been diagnosed for 2 years with POTS. Sick for 3 1/2. My oldest son developed weird symptoms about 6 months after me. He was 12 at the time. Different symptoms but similar. When I was testing myself for POTS I used him and my husband to verify that my BP machine was working correctly. He went from 94 sitting to over 140 standing. My hubby's HR moved only a few points. I brought him to see the only pediatric cardiologist in my area when he was 13 and she dismissed my data, ignored his symptoms, did a poor man's TTT incorrectly (had himlay for 20 minutes, sit for 5
  10. I definitely get the head pressure thing. It is usually a warning sign for me that I over did it and need to go lay down before I have no choice. It does feel like it is a never ending battle. Barely recover and it starts all over. Having my medication has helped a lot but I still have to be careful not to over do it.
  11. Yes!! That's what she called it. But honestly my son's is really scary looking because it gets that dark purple. My youngest son has it as well, but I noticed my hubby has it on his hands (same place as my youngest) and they don't have symptoms of POTS or anything. I get it mostly on my legs but I can get it on my arms too. I have looked back and there are things that really make me wonder if their are related. I don't think there is an answer. But have POTS has made me watch my boys a lot more carefully. Tomorrow (hopefully) my oldest will be getting checked out for POTS. He has too man
  12. No dilated pupils. Doctor called it something else. If I think of it I will have to put it on here.
  13. You could have light and/or sound sensitivity. I have sound sensitivity and it can be difficult to deal with. Construction noises and sirens can trigger it on a daily basis. I used to love to listen to blaring rock music, now I can hardly tolerate any music barely on. I currently have the issue of a neighbor (I live in an apartment) that has their speakers next to the wall or something and the bass from movies and music while they are blaring it thumps through the wall. Makes my heart go nuts. Finding out what the exact trigger is and avoiding it can make a big difference. Good luck. And
  14. Last year I noticed my son's skin turn purple and "lacey" looking. Freaked me out so bad I brought him to the doctor. Doctor looked at him and the pictures and she said "it is normal, you have it too". She told me the name (can't remember right now) and told me to look it up. Thought it was funny when she compared me to " normal". I think it is odd that his skin will turn such a dark purple but lay him down and it disappears within minutes. It happens from his neck down. I have added it to his possible POTS symptoms and when he sees the specialist hopefully he can explain it. For me personally
  15. My specialist is a neurologist. When my cardiologist (second one BTW) try to refer me to my local EP, the EP said I don't want her she needs to see a specific specialist that is 3 hours away. It is rough seeing him. But he was the first doctor to truly listen to my symptoms and believe me. I now have a good team of doctors and that makes it big difference. It took me about a year and a half to find them. I am actually working on my specialist seeing my oldest son who I suspect has it as well. There has been some scheduling issues but fingers crossed he can see him on Monday
  16. I work part time with amazing flexibility. My job is part of a small business and my boss is disabled as well so he understands. That being said on occasion I have worked 40 hour weeks. I would advise salty snacks, lots of water, and take a break. If you start to feel bad take a minute and just relax. Also listen to your body. I am excited for you that you feel like you can go back to work. That is always a good thing. And if you have to back down to part time don't be discouraged. You can always try again later.
  17. I drink water, vitamin water, broth, and Diet Dr. Pepper (used to be Mountain Dew). Caffeine jolt helps me. But coffee exhausts me.
  18. POTS can be mild. But if it was mild we wouldn't be at the doctors so much. My mom mentioned POTS to her PCP and her PCP shrugged it off as it isn't bad if she takes her meds. Honestly I am better then I was 2 years later but I am still not where I wish I was. Meds only helps so much. But if I am careful and avoid triggers I can have a life. Which is considerably better than where I was.
  19. Yea I tested negative for celiac and food allergies. Slight reaction to some outdoor fall molds though. It is kind of bizarre how much better my GI issues are.
  20. Sometimes it is coincidence. Other times you just need a different med combo. There are dozens of beta blockers and I am sure you wouldn't react the same to all of them. If you don't trust your doctor get a new one. They work for you. But they are also working with limited knowledge and are only human. Sorry I am kind of contradicting.
  21. That might explain why my bloating and heartburn issues disappeared when I started Keto. Bread was always my number one culprit for bloating.
  22. I meant shying away from ablation. But getting the EP study. Can't they see extra electrical pathways any other way?
  23. I am not sure what an EP study consists of. But if they keep suggesting it I would go for it. More data is always helpful. Even if it just rules things out. POTS is not a disease itself. It always has an underlying cause. Possibly the cardiologist has never seen a person with POTS or doesn't believe in it. I started seeing a shrink recently to diagnosis my ADD and OCD officially to help me apply for disability and she is currently in school. She told me she vaguely remembered something about it and said she would have to look into more. And she not only works there she works as a cardiol
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