lalalisa

Rachel - This is all so helpful and interesting. Thanks for this post! I'm going to have my neurologist check my serotonin levels next time I see him. Now that I've been on Amitriptyline for a good 10 months though will my numbers be off? Also, how many mg's do you currently take Rachel? I'm debating upping my dosage but I do find that I'm a little bit foggier on Amitriptyline so I'm hesitant (fog is so frustrating although better than having a migraine). I'm excited to know of a new migraine medicine as well to try. Naomi -- When I began on Amitriptyline I would wake up with a really high heartrate and it was pounding. This would only last a few days and then my body was used to the dose. Bc I always seem to have odd reactions I only took 1/4 of the lowest dose possible and worked up adding 1/4 a dose each week. I can't imagine what it would have been like had I taken an entire pill. Amitriptyline has helped my migraines.....just like Rachel, it doesn't take them away but lessens the symptoms. Thanks! Lisa

So sorry for your symptoms! I used to be able to take Toprol XL (early on after my pots diagnosis 10 years ago) but I tried taking it last year for migraines and I felt very short of breath. I am on Singulair and Asthmanex which control my asthma well but there is something about the Toprol that makes me feel short of breath. I can't take it either. It's definitely worth trying to go off to see if this is the cause. Hope this helps, Lisa

Hi Bayly! I hope you're doing better. I too have been helped by Amitriptyline. My neurologisy prescribed it for me as I've had daily migraines for about 8 months now. They don't completely take away my migraines but help a lot with the nausea and the sensitivities to light and sound. (I've had to go up super slowly on the dose as I get some tachycardia while my body adjusts...) Hope you are feeling better soon! Lisa

Thanks for your update! I'm 16 weeks as well (we can go through this together) and just this week have been able to go off midodrine thanks to the extra blood volume. I don't feel well upright but my bp is much better with the extra blood volume - enough that I'm not worried about blacking out. I realize this could change again, well see. Hope all continues to go well.

Julie. Thanks for your thorough post about your experience. That is really interesting and I'm so glad he was able to help make sense of things for you. I really hope his suggestions are really helpful for you. Thanks again, Lisa

For those of you who've noticed a difference when you don't eat gluten I am curious if you noticed the difference when you were 100% gluten free or if you just cut out most of it (cereal, bread, pasta, etc). I'm beginning a trial now and I'm wondering how much I should be reading labels and trying to be 100% gluten free to see if I have an intolerance. Thanks, Lisa

I get this as well. It is the worst when I'm physically more run down or more fatigued than usual. It seems to be accompanied by shortness of breath as well but I do distinguish them both as separate symptoms as one is sometimes better or worse. I wish I had answers for you as well. I find these mysterious symptoms to be some of the most difficult. If I have a clear explanation it's easier to tolerate. Just wanted you to know you aren't alone! Lisa

Thanks Julie!! I've been a patient of Dr Grubb for about 8 years (he's great too, just really far away now)! We moved to VA last year and I've felt like I've been on my own with symptoms and treatments. Looking forward to hearing how this goes for you! Lisa

I called today and he's going to see me in late Feb!!! Thanks so much!! Julie, will you please let me know how your appointment goes? Is this your first visit? Lisa

Thanks everyone! It's at the least helpful to know that many others of you battle with this - although I wish you didn't!!! It really is probably my most disturbing symptom as well. You just can't really shake it or get your mind off of it - it's just not that simple. As some of you mentioned mind seemed to show up over night as well. So interesting!!! I lived with POTS for about 7 years without it and then one day it was there! Thanks again!! Lisa

Oh, is this who I contact?? http://childrensheartinstitute.org/aboutus/contact.htm

Thank you, thank you, thank you!!!!!!!!!!!!!! After a terrible apptmt with a cardiologist this week I've been really discouraged. You all made my day, maybe my month, maybe my year!! =) Blessings, Lisa

Thank you both for your input! Fiona-Jane: The air hunger theory sounds interesting and very possible. Whenever I'm at the dr. my Oxygen levels look great. I may get a sensor though now knowing they are easy to get on ebay. =) ruby Tuesday: Thanks for your story of all you went through with testing for this. Wow! I've considered asking my PCP to send me to a pulmonologist but usually chicken out. I do have asthma flare ups but the shortness of breath is constant and seems to be a different sensation. I wonder how common your diagnosis is. Interesting!! The first time I experienced the shortness of breath was right after my daughter was born (I had a C-section). It came on suddenly and lasted for many months - maybe even a year. I'm currently in a flare up that has lasted 8 months now. It's amazing the symptoms we get used to, well sort of used to! Thanks again! Lisa

This is just terrible. I'm so sorry for the extra stress this must be causing you. I hope you can find a better dr. quickly!!! Blessings, Lisa

Hello, I've experienced shortness of breath as a POTS symptom off and on but it's been really intense for me since July. I'd love an explanation of this symptom. What do most dr's say? (I called Dr. Grubb but haven't heard back) I find it really disturbing - even though my dr's don't seem to think it's a concern, it feels concerning to my body. I thought maybe if I had a really good explanation that this would help me deal with it better. =) Thanks for any input! Lisa