puppylove

I can barely go anywhere in public now. It did not used to be this bad. I tried to go to Petco last week and it was an epic fail. I got so dizzy I sat on a big bag of dog food on the floor. I thought it was just a bad potsy day so I tried to go cloths shopping today. Again, I had to sit and I didn't even try anything on. I was able to walk around a pumpkin patch orchard place for three hours two days ago... I'm really starting to think one of my main triggers is overstimulation and florescent lights. I'm just scared I'm getting worse because I used to do things and just not enjoy myself because I felt too sick but now I cant even do things indoors.

I think I remember someone else making a thread about this, if you want to search for it. My pupils are always very dilated, but they are the same size.

I don't think I haven't been nauseous for two years. It's my worst symptom too. I can't go to school or drink enough either because of it. My doctor isn't positive but he thinks mine is due to blood pooling in the stomach.

For me yes they were given right when we were done, but I think some make you come for a follow up. Bring a snack and water for afterwards if you are fasting before hand because I felt so bad after and really needed it! Don't worry though it really feels just like a bad potsy day but you have doctors and nurses monitoring you. I hope it goes well and helps you get some answers!

I'm sorry. I know what you are going through. When I was first diagnosed with POTS exhaustion was up there as one of my worst symptoms. Luckily, it is the only symptom that noticeably got better after I started taking Florinef and went on homebound schooling. Really I think the thing that helped the most was the homebound schooling. I really wish I could go back to school but getting up at 5:00 and walking up and down the halls for six hours was/ is just too much for me right now. Don't push yourself too hard. I also know what you mean about the specialist. I went to the "POTS specialist" of the east coast, and got no where because he was too busy to ever answer my calls or emails. I hope you start feeling better soon.

I have so much trouble shaving my legs because after they itch and burn so badly i want to scream. I have tried all kinds of shaving gels, lotions, razors etc. nothing helps. I don't really know anything about mast cells but could that be the cause of this? Thanks!

I was allowed to talk. They wanted me to, so I could tell them everything I was feeling.

Does anyone have it? My symptoms are so similar to people with H Pylori but I was tested last year during an endoscopy and it was negative. Also, once you have it wil it only go away with medication? Thanks!

Zantac helps with that burning feel sometimes. And sometimes apple cider vinegar mixed with honey and water will help. It's really hit or miss. :/

My abdominal CT scan shows that my left kidney is in the wrong spot. It's called crossed fused renal Ectopia. I don't think it's a big deal, but I was just curious to know if anyone else has it? It can occasionally cause urinary issues so I'm just trying to figure out if it's a clue or something to what caused my POTS. Thanks!

It made me feel very bad. There was a lot of walking/ running through the airport before hand though. I also didn't know I had POTS then.

Definitely yes. It makes me mad because people don't believe your sick when one minute your fine and the next minute your too sick to get off the couch.

Yes! It feels like a mix of having the flu and being on the laughing gas they give you at the dentists. Disoriented and just... bad. I hate telling the doctor I feel wierd because of course they just give that blank stare.

I'm going to a new doctor and I want to bring my records. I asked my current doctor for a copy and they said it would be a two week wait and $25 for me to get my records. This seems kind of wierd to me, but is this normal?

I'm not close either, but I would love to try to help in some way!

I hate winter. I can never warm up, so I love to go outside in the summer and feel the warm sun on my skin (while getting some vitamin D! ). Also, i'm always catching colds or the flu which wrecks havoc on top of POTS.

Thanks for the ideas- I will try them.I have tried peppermint and Ginger teas or nibbling pretzels but it only helps for a few minutes.

Me too! I was actually about to ask about this exact thing!! I notice that my hand also gets slightly red and swollen when it hurts really bad. Maybe it has something to do with blood pooling/circulation?

Every night I'm up until at least 2:00 am. Normally because of stomach issues, especially nausea. Would a sleeping pill help? I'm really up for trying anything because it just makes everything so much worse.

Yes yes yes! I have had tendinitis in both of my ankles- once in one and twice in other. I had no idea why because I only do light recumbent excercise. I don't think I have EDS though- I'm not flexible or double jointed anywhere.

You automatically try to put your legs up when ever you sit down.

Melatonin- for sleep

Nausea is my most debilitating and consistent symptom. It is there with or without tachycardia. But it's definetly worse with.

Lol that happens all the time! They will walk in and right away say how are you and I would always just say good or whatever. Then my mom would be like um... no you're not.

I'm on Florinef, I was trying to stop but I need to see my doctor first. Anyway, the reason I wanted to stop was because I was retaining fluid everywhere, but especially my stomach and legs.