mully2014

I'm the oldest and have had symptoms my whole life. My younger sister has POTS as well but is well controlled with florinef. She had only recently began to show symptoms of POTS.

Thanks I'm hoping that it will all go smoothly for me too!

What kind of doctor do you go to for EDS 3...is there anything they can do that would treat it?

Well took the Cymbalta this morning and got hives AGAIN...this time my mouth was itching and felt like it was slightly swelling because I felt the constant need to clear my throat. We gave me benedryl and I'm doing better now. SO it has been decided i won't be taking that med again. I'm just glad the reaction wasn't worse.

Has anyone else gone through with getting any accommodations for the ACT Test? I'm going through this now because I'm really slow at processing things quickly with all of my concussions and the brain fog from POTS. They are trying to get me extended time and be able to take it over a two week period of time so I can pick a day that I feel good enough to test. I hope that the process goes well and that it gets approved!

How many of you have hypermobility? I have hypermobility and it causes me some pain becasue my joints are looser than normal. If you have hypermobility do you have pain along with it?

Yeah, I know I'm scared to try something my body is rejecting. I'm gonna have the Benedryl right on hand.

I was on gabapentin after I got my third concussion from passing out and couldn't get rid of the headaches (still haven't gotten rid of them). It made me extremly tired all of the time so I had to go off of it. The doctors now think that my headaches might be just because of the POTS stuff. I hope you find something that makes your headaches better!

This morning I got hives all over my arms and chest from what we are almost certain is from the Cybalta. Has anyone else gotten this reaction from this med? My cardiologist is having me stay on the Cybalta and try it again tomorrow and see if I get the hives or not. Not looking forward to the possibility that I might have another reaction.

I didn't know what POTS was until I was diagnosed with NCS and after a while diagnosed as having them coexist together. We had always thought it was a hypoglcemic issue before that.

I got fatigued on the beta blocker too. I also struggle with all of this fatigue and I think even more now because of a new med I'm trying for the syncope, Cymbalta. Has anyone had mjor fatigue on this?

YAY!!!! I'm sooo happy that this is starting to get figured out for you!

Yeah same for me..if I get up a lot then I will notice more symptoms.

Haha sooo true that they treat you like a psych patient!!! I used to go in when i was passed out for five+ minutes (something my cardiologist suggested) or when I got injured (normally head) or if there was breathing problems. Now I don't go in unless my cardiologist says I need to go in and my parents drag me there. Being there can make a person even more miserable!

Has anyone had it where their body used to reset but for some reason it stopped resetting? My body doesn't seem to be resetting anymore and I don't know if that has to do with a flare of it or what.

My body used to "reset" when I passed out but unfortunatly for a while now my body doesn't seem to be resetting after I faint. The "reset" would be when I would have less symptoms (still had them but it was better). Eventually the dizzy spells would increase and I would pass out but I would feel better for a bit after passing out. Wish I could get that feeling again! So, how many people "reset"?

Haha I love(d) to run...can't anymore. the feeling you get with accomplishing a great run was the best feeling though. Miss it sooooo much!

That's great!!!

Question for you- What is the deck of Set cards? I always carry water with me and always have someone else with me that knows what to do if I pass out. I always make sure that I can sit down somewhere safe and that I can get food quickly too.

I've been on florinef for probably a total of a year (there was times my doctor had me off of it to try different combinations). I didn't get any side effects but have the same problem where it doesn't do anything to help. I would have your doctor do a blood test where they can check renin levels based on the results it will let your doctor know if florinef would even be a good drug. If the renin levels are lowere then florinef won't be as effective but if it is higher then it should be a good med to stay on.

Ha ha I've heard this too but unfortunately can't chew gum because of jaw issues.

Wow! Sorry you are going through all of this... hang in there and don't give up on it because they have to accomidate for you it just sounds like it might take a little while for them to understand that. The new doctor will definetly help. I have had problems with people thinking I'm just stressed out or something (I'm not), but I learned that you have to keep defending yourself and believing that you have every right to get the accomidations you need and don't hesitate when someone accuses you of not having a REAL illness because if they think that you doubt it then they most definetly will. Hope this gets figured out really soon.

I had Dr. Cannon a pediatric cardiologist. Seemed nice didn't have much to offer me but that just might be my case. The appointment didn't take long but was disappointed when I left because we didn't get anymore answers. I hope you have better luck with getting answers and the future!

Aww I'm sorry you are having such a hard time! I hope that they can get the homebound schooling figured out soon so that can help you some of the time with getting work done. Are you gonna have a tutor come to your house every once in a while to help teach you some of the things because that might be a good thing to look into. It is the hardest at first adjusting to school with POTS but you will get it figured out and it will get better. Don't worry about graduating right now you have time. Just take care of yourself and then you can get the school stuff taken care of...your health is more important!

I get them without the meds too but it was just worse when on I was on meds! My body can NOT regulate my body temp at all...I go from being hot and cold all of the time for no reason which is a pain because nothing seems to make it stay feeling like a normal body temp.