Hi, my daughter is an 18 yr old post op chiarian. She was diagnosed with POTS about 8 months after surgery. The only thing she was told yo do is up her water and salt intake. She was always extremely nauseated because of her Chiari headaches. Headaches have improved dramatically since surgery. Now she struggles with the dizziness and fatigue from POTS. For the last 2 weeks I have noticed her nausea getting really bad. It’s constant. I came home from work tonight only to have my husband tell me that our daughter said “dad, something’s wrong with me”. She’s been really out of it. Is there anyone out there that struggles with terrible nausea because of POTS? Could it still be the Chiari? I’m at a loss. Any advice?
She’s not taking anything. She was told to up her water and salt intake and classified her as having POTS. Her feet and hands are always cold, she’s never tolerated heat and she’s fallen from dizziness a few times. I know that’s because of the POTS. What I don’t understand is the nausea. Why is it so bad right now? Could it just be low blood pressure?
Thank you so much. I’m looking into a different NL who is more familiar with POTS. We’re not getting anywhere with her current dr. Thanks for your advice. I think it’s time for some meds. The only think she’s taking now is promethazine for nausea.
Thanks guys! I am so stressed out. We are currently uninsured because I lost insurance through my job. I’m hoping that since she is now 18, she can apply on her own for medicade. I feel so helpless right now. It’s $179.00 per visit to her NL. I almost had a heart attack when I found that out! She currently needs to see her NL, cardiologist and a gastrointestinal dr. When it rains, it pours. 
Thank you Abby
I also have POTS and a light bulb just went off in my head. Sometimes I feel so stupid! Lol, I just posted about starting Topamax and thinking it was that causing the exhaustion, not even thinking about the POTS. I have been in a doen cycle with the Chiari lately and the POTS (now that I think of it) has been acting up. Dizziness, fainting feeling, shortness of breath, blackouts, extreme exhaustion etc. DUH! Anyway, my NL had sent me to a cardiologist and he didn't want to put me on BP meds, felt it wasn't a good idea. (idk why) So, he advised me to drink sports drinks (zero calorie) on a daily basis (YUCK) and eat smaller meals throughout the day. TO come back if I started passing out. So, that was my RX. Lol. I was heat intolerant all summer and I get times when I feel so cold I have have to get in the shower to get warm. It is such a strange thing to deal with. As for state medicaid, your daughter should qualify! Especially if you can have her NL say that she is on life sustaining medications. Her medications just have to be ones to get her through the day to be healthy, not keep her alive. I lost my insurance a few months ago and I am so thankful for our states insurance, I don't know where I would be now without follow up care.
I’m thinking its the POTS that’s bothering my daughter and Not the Chiari. Even though I know that after decompression surgery, your symptoms don’t go away 100%. The only thing accomplished from surgery is, the pressure is off the tonsils and brainstem and CFS flow is restored. That doesn’t cure everything. However, it did improve her headaches. Which leads me to believe that all of this nausea and dizziness is related to POTS. She had extremely low blood pressure when we went to the cardiologist so I ordered her a wrist bp/heart rate monitor. After using that for a while, I think we’ll be able to tell if its the POTS. I wonder if cold weather aggravates POTS. Oh the endless questions we all have.
My POTS was aggrevated (for sure) by the heat! I had started feeling better when it started to get cooler, but then the COLD started and it got worse. It does say that exercise intolerance is a symptom and temperature intolerance, which I def have both. It drives me nuts. I looked forward to the summer all winter long and then couldn't enjoy it anyway. It seems like spring and fall are the better seasons. I hope that she can get some things under control. They had sent me to the balance center. At first, it didn;t seem to help, but after a few weeks (not sure if there was a correlation or not) I seemed to be less dizzy. But then again it was staring to get cooler out. This stuff is soooo hard to figure out. Nothing seems to make sense!