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

Thanks!! Unfortunately I'm 32 so I don't fall into his typical patient. Do you think it would be worth contacting his office to try to get in anyways? Thanks again! Lisa

Hello! My husband and I moved to Charlottesville, VA about a year and a half ago. I've been searching for a dr. who understands POTS now this entire time. (I've been to quite a few cardiologists who weren't helpful at all) After going through a miscarriage this year that through all of my POTS symptoms for a loop (and now a pregnancy), I'm starting to feel desperate for a dr. Does anyone have any suggestions of dr's in the area. If a dr. is good enough, I'm willing to drive a few hours but the trip to see Dr. Grubb right now is just too much for me physically. Thanks for any advice! Lisa

Hello! Sorry I'm a little late chiming in. I'm currently 13 weeks pregnant and have been on midodrine the entire time. I also have a 2 year old and took it during that entire pregnancy, delivering a healthy baby. I'm planning to take it this entire pregnancy if needed. I am taking as little as possible. Which is 15 mg doses some days and some days I can get away with lower doses. I find pregnancy to be kind of a wild ride of symptoms but none seem to last the entire 9 months, lots of ebbs and flows. Hope this helps. Feel free to ask any other questions! Lisa

Hello, I've been battling with migraines almost daily for a month now and it's getting really difficult. Meds like Zomig and Axert just make me feel worse so we're going the preventative route (along with the fact that they are daily). I've been on Toprol for 2 weeks now and it doesn't seem to be helping. (I didn't realize that Toprol was prescribed as a migraine preventative until now). I'm thinking of trying Topamax next but wondered if any of you have had experiences with this. I hear it can make you really tired. Also, Amitriptyline is also an option. Any thoughts? Thanks! Lisa

Wow, this topic is raising my blood pressure. Too bad it won't last. I need Midodrine!!

Hi Maxine, I just wanted to tell you that I read your post and it sounds like you are going through a lot right now! I'm relieved with you that your latest bloodwork came back normal - I'm sure that was super scary! I hope and pray you can find some help soon! Blessings, Lisa

Hello! I am with you! I always get more fatigued in the spring time during allergy season. I have been tested for allergies and found that I have numerous allergies that are quite severe. I take Singulair, Nasacort AQ, and benadryll. If I had to choose one that I couldn't go without it would be the Nasacort - it really helps. Unfortunately I don't know of anything to help with the fatigue part. But I do think you're on to something. I know quite a few people who are really tired during allergy seasons especially. You could also look into getting tested and taking shots. I did this and it didn't help me but it does help many! Blessings, Lisa

Hello, I'm so excited for you! I gave birth to my daughter 11 months ago and you are in for such a blessing! The beginning is exhausting but every week gets better. I got some adrenaline surges from contractions that were hard but at least not bad for my baby. I ended up having a C-section because my daughter (we aren't sure why) wasn't doing well with my contractions (her heart rate dipped dangerously low repeatedly). I had an epidural and they gave it to me quite slowly. The original plan was to have a smaller dosage of an epidural given slowly but once I was in need of a c-section they had to give me a heavier dose of course. The epidural was just fine. I did take some Midodrine to help keep blood pressure up... Let us know how everything goes, we're excited for you!! Lisa

Wow, I am SO sorry to hear about your experience. The previous posts are correct - this should not happen and I hope you were able to find someone to prescribe more Paxil for you. I am currently on the lowest dose of the extended release Paxil. (Paxil CR 12.5) Whenever I've gone off of it I've cut it into pieces and SLOWLY titrated off over the course of a couple of months. I can't even imagine what your body is going through! Please let us know how you're doing, Blessings, Lisa

Hello, I am currently on Paxil CR and have had good results with it. I have had a time with some of the SSRI's - they can definitely give you some weird side effects but if you find one that works it's worth it in the end. My advice would be to go on it really slowly. I cut the pills into pieces and take a small amount for a few days (until I no longer feel any side effects and then increase a bit more, etc, etc). It usually takes me a couple of months until I'm on a full dose because I do it gradually and this allows me to keep functioning during the process. Paxil CR (which seems to have few side effects for most people) recently went generic and I found that the generic didn't work as well for me so I'm back on the brand. I think it's worth a try but go slowly if you can!! Blessings, Lisa