corina

I'm having both fecal and urine incontinence which comes and goes without any reason. Feel very embarrassed about it. I won't leave home without pads. Sorry you  are experiencing this too (the fecal part which is the most embarrassing imo)

Lots of us have been tested for pheo as our symptoms seem pretty much the same. I haven't heard of anyone actually having pheo and will keep my fingers crossed this won't be the case for you also. I hope the propanolol works for you!

Hi Marsha, don't have much to add just wanted to let you know that I'm very sorry for your loss and hope you are able to cope. Glad you remembered to come here for help and comfort! Warm wishes

I don't have any feedback on this kind of treatment, just thought to let you know I'm happy to hear about significant improvement!

I'm so sorry gertie, I don't have any answers. Are you having follow up testing? Hope things will work out well for you!

Hi elfinko, welcome to DINET. I'm so sorry this is happening to your son. I don't have any answers, hopefully someone else is able to shed some light into your situation.

I love gardening too! And spending as much time outdoors as possible! We have raised flowerbeds which I enjoy loads. Unfortunately we have lots of rain here in the Netherlands at the moment.  Have a great time gardening!

Yayyy happy for you!

Good luck on your test ringsmackie! May be telling the nurse/doctor about your fears might help them understand and be gentle.

Never mind htberg, I have deleted them! Glad to have that many new posts!

Thanks Rachel! So glad to hear Tyler is doing okay!

Yes, me too! Mestinon really helps me to keep warm!

Thanks for letting us know! So sorry about the waiting game, I've often felt very impatient awaiting specialist's answers thinking that I have a life to live too and I don't want to waste it waiting! Hope things will speed up soon!

I take food with me so that I can eat immediately afterwards. Hope things will go well for you!

Hi Mom K. I found you an old topic. Hope this will help you!

I had the tingling in my scalp. Other than that there were no side effects. Unfortunately it didn't do much for me. I hope you will have good results trying this med!

Hi! I think this was discussed in the past also. I have vertical lines as well, not sure why and if/how that could be related though!

Welcome to DINET stayathomemom! Glad you found us!

Yayyy for you katcanny! Hope this is your answer!!!

Hi Catnap, welcome at DINET! Unfortunately stress can definitely worsen your symptoms

Welcome to you too MJ! I can't sit for long either, it helps me to stand up and walk around a little and then get seated again. Just a thought of course!

For those of you answering this topic: please be aware that you cannot elaborate on any negative experiences here at our forums. You do have the possibility to pm of course!

Hi eli12, welcome to DINET!

I'm on octreotide and though I'm not cured my quality of life is much better! It took my doc about 6 months to agree on prescribing it and I had to up the dose a few times but all in all I'm glad my doc agreed on me using it. I need an SSRI with it to have the best quality of life. I convinced my doctor by bringing him research on the use of octreotide in POTS. May be you need to dig into this, I could help you by e-mailing you the articles I handed to my doctor. 

However, this med is not for the faint hearted! I got quite sick when I started it (liver problems) which resolved by itself fortunately and recently had to have my gallbladder out which turned out to be chronically inflamed and overloaded with gallstones. Octreotide is known to cause gallstones so I knew at some point the gallbladder had to be taken out.  Octreotide can also cause inflammation of both liver and pancreas which can be quite serious.

Hey Andy, great to hear from you! Sorry things aren't going as planned, I hope your new regimen will help you get back to a better quality of life. Take care!