SeattlePotsy

Yes! I have been on TPN (IV nutrition) sence November 2011 (at home). I had the same issue..would throw up after eating. Mostly I think time has helped the most and maybe some meds but it is hard to say. I am on Nortriptyline for what they are diagnosing as cyclic vomiting and have gone up on my Florinef to 0.3 mg and have started on propranolol 10mg twice a day. I am now only doing TPN 3days a week and am planning to try and go off of it next week. TPN, while not the ideal way to get nutrition, is not highly dangerous, especially if only temporary. They wil closely monitor your electrolytes, liver function, and nutrition status while you are on it and adjust the formula as necessary. I hope you feel better soon! Good luck with everything!

I have had prolotherapy (basically a series of injections that scares up the ligaments and therefore makes them tighter) in my ankle and SI joint and it has done wonders! I have also done a lot of PT but I wasnt able to run for about 3 years and now I can (and in my less discomfort!) thanks to prolotherapy!

One of my first symptoms was full body tremors that looked like seizures

YES! I get full body tremors that look like seizures. They usually start with surges in my chest and a pounding heart beat. When they are really bad I cannot talk and have very blurred vision. I take Ativan at the start of these episodes but often my body is quick to build a tolerance so I have to use more to make them stop. They can last anywhere from 10 minutes to 3 hours. I just had a three month period free of these episodes but they recently came back. I am going back on Gapapentin and uping my Florinef to 0.3 (where it was during the 3 month period...had come down to 0.2 recently) with hopes that will help. I wish you the best and hope you find something that helps!

lemonsin2lemonade- ha ha nice! where are you from? it is funny cause most of my throwing up is not associated with nausea...just kinda a reflux thing or something...like my stomach just doesn't want anything in there and it is rejecting food but for nausea those meds do help. Thanks for the advice...haven't tried the probiotic thing. ramakentesh- yes I saw a autonomic neurologist at Mayo clinic that suspected that I was having autonomic storms of sorts. No fun for sure! Mack's Mom- I know you are right about reglan. I am a nurse and I have been tenative to continue with it and have cut down on the dosage. I usually get tachy before and during the episodes and BP spikes. POTSMama- Sounds like you've had a similar experience. Yep, definitely was told they were pseudoseizures for the first 6 months which was really hard. So glad to have answers now! Thanks for the advice and sharing your experience. Thank you all for your replies and caring! Wish you all the best!

So my POTS presented in an unusual way and I am wondering if anyone else has experienced these symptoms. It started with feeling nauseous, flushed, heart started to pound, felt surges in my chest and then my body started to shake. I proceeded to have these episodes that looked like seizures...I was conscious but unable to speak, blurred vision/rapid eye movement. The episodes would last anywhere from 10 minutes to 3 hours. Ativan was what helped them stop. EEGs negative and was told I have hyperadrenergic POTS. These episodes have improved with 0.3mg of fludocortisone. Also, about three months ago I started throwing up with the episodes and then throwing up just after eating. I am currently on IV nutition because I am still not able to eat normally. The two gastric emptying tests I have had I threw up the contents and was not able to complete the studies. I am currently on Nortriptyline (for tx of possible cyclic vomiting syndrome) and Reglan (for tx of possible delayed gastric emptying). Has anyone else experienced anything like this and do you have any suggestions for treatment? THANK YOU SO MUCH!

Yep. I have POTS and I started throwing up after eating about three months ago. I was in the hospital several times and I am currently on TPN (total parenteral nutrition) at home. They have thought of several different potential causes- delayed gastric emptying (don't know because I am unable to complete a gastric emptying study because I just throw up the food) or cyclic vomiting. They are not sure why but tricyclic antidepessants have been shown to help with cyclic vomiting and can help with nausea if other meds have failed. Have you tried Reglan or a med that would help speed up your stomach emptying? Ever had a gastric emptying study?

I had thyroid cancer at age 18 (I am 26 now). Have they ever attempted a biopsy on you? Do you have any systemic symptoms related to your thyriod? I know the the range of normal for thyriod levels is very broad and can often be misleading (I was low normal for a while before my cancer). Lymph nodes that swell and than shrink would be more consistant with your body fighting a bacteria or virus than any growth...as far as I am aware.