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  1. Hi Carol, I saw you are using LDN.  How did you start out and ramp up dosage-wise and what if any side effects did you encounter?  I may begin a course and am in uncharted territory (but ever since I was dx'd with POTS, it has been that way).  Thanks!

  2. Hi Dizzygirls, did you mention in a previous post that your daughter takes phenergan? If she does on regular basis, does she pair it with Benadryl? I ask because my headache dr. said that if I take phenergan, I have to take benadryl with it or I may get muscle seizure-type side effects (I forget the pathways involved at the moment). My dr. said that a patient ended up in the ER with muscle seizing up symptoms. I could be way off but thought I would mention it. I hope your daughter gets relief soon.
  3. Hi andreak, I would recommend your daughter seek out a high risk OB if she has not been referred to one already. I am currently seeing my regular OB but have been having consults with a perinatologist who specializes in high blood pressure patients as a precaution. Even though high blood pressure is not my problem, he has been the most knowledgeable doctor second to my cardiologist on how my heart, heart rate, and blood pressure should behave during my pregnancy in light of POTS. I feel 100% better knowing that he is looking after me and that I have someone who is capable should the pregnancy turn into a high risk situation.
  4. Great recent article by Dr. Blitshteyn on Dysautonomia International. Thank you.
  5. Hi Annaliese, My doctors said that pregnancy was a major event, like a "trauma" to the body so it can be seen that way in terms of developing POTS. I think it could be more of an immune system change. I developed POTS postpartum (post-nursing, actually) and around that time my environmental allergies increased. It's like my immune system was suppressed and after delivering, it bounced back to a higher degree of sensitivity.
  6. Since I posted in this thread, I saw the allergist who listened to my concerns regarding POTS and having non-classic allergy symptoms (tachycardia, flushing). I was tested on a bad day - when I had flushed that morning - to determine my baseline tryptase to investigate mast cell activation. I was to come back after another significant flushing episode to see what the difference was, which never happened because pollen levels dropped and remained low enough for me not to react. However, my baseline tryptase level was well within "normal" range, even after that morning flushing episode. The reason the doctor emphasizes tryptase is because it can be reproduced. I will re-test this spring I'm sure. I'd be grateful to hear about your pathways to diagnosis if you have a mast cell issue.
  7. Hi Katy I have taken Jarrow brand quercetin with bromelain during allergy season. It was recommended by my dietitian to reduce my histamine load. I believe it helped, but it was subtle. I believe my daily Zyrtec and Singulair helped the most during the peak of the season (also spot treating with Benadryl or hydroxyzine occasionally). I had no side effects and will probably take it again this allergy season.
  8. Thank you Corina and for sharing your experience Firewatcher!
  9. Hi everyone, I am currently pregnant at 28 weeks. I have been managing pretty well despite POTS. In fact, POTS has not flared up that much. The biggest hurdles were nausea and migraines in the first trimester and I wasn’t sure if I was going to make it. I did have some hypotension and a handful of tachycardia episodes. I stopped midodrine within the first trimester. As I enter the third, I feel really good over all. I am hoping to have a productive conversation with the anesthesiologist in a few weeks. I find myself in the position of trying to describe POTS in the context of delivery to someone who likely does not know anything about POTS. I have read the studies and this forum’s experience about pregnancy, POTS and anesthesia. I read a post that mentioned the epidural helping with adrenaline surges due to contractions which I will share with the anesthesiologist, and I will ask them not to use epinephrine. I’d like to know what other experiences can I share about the POTS birth (delivery) experience to help them understand what could happen? I’d also like to know how pushing affects BP and how was it handled? Also, does pitocin affect POTS patients any differently? Scheduled induction vs. using pitocin to augment delivery? Thanks in advance!
  10. Hi Faye, I have experience with Dr. Cannom and highly recommend him. He is the expert in his field (electrophysiology) and helped me a great deal with my POTS. He administered a battery of tests including TTT. I found him very easy to talk to. His medical and office staff were all excellent (at the time I saw him) and I got great support when needed. If I have any advice for seeing him (or any doctor), I would just be honest with him about all of your symptoms because with POTS, some seem unrelated. What also helped in my case was wearing a Holter monitor to track the tachycardia episodes. Best of luck at your appointment.
  11. I've lucked out with two great cardiologists, especially my first who diagnosed me properly. He was an electrophysiologist who had experience with POTS patients so I was really lucky.
  12. That's encouraging news and I'm so happy to hear he is doing better! LDN has appeared on the periphery of some of my research for hypothyroidism. It is interesting to hear about it in a dysautonomia context.
  13. Thanks ks42. I may look into the oils as an option. I was given Flonase but I can't say it made a difference in the sinus swelling. I'm still very slowly getting over this infection...at least the cough is 80% resolved.
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