mully2014

Check out Neurocardiogenic Syncope...it is closely related to POTS but doesn't have the HR issues more BP stuff.

I miss running so much! I love it and it has been so hard to not be able to anymore... now I have days where I'm lucky if I can walk to the kitchen without feeling like I'm gonna collapse. I'm hoping that one day I will get to run again... I know that it won't ever be the same probably but I still miss the feeling of accomplishment that you can only get with running.

I've had to have stuff that is similiar to protein drinks during some of my really bad lack of appetite times. It would be the only way I could get anything to stay in.

Praying for you as well! Are you always that tired? I was so tired at one point that with my condition and with the concussion I had gotten I was sleeping 22 hours each day and I did that for a month+ kinda scary to be that tired. I hope that they can get your iron levels back to norma soon!

Thanks for replying...I don't have any nausea meds but now I'm thinking I might need to if it will help. My only problem with the nausea meds is that I'm taking so many already and I hate to put more drugs in my system. I will have to try the ginger though, I might be able to tolerate the tea.

I've had many concussions and we always thought that was why I have the constant head pain but now we believe it is because of having the POTS. Several of the doctors agreed that was the casue and pretty much told me to deal with it and focus on controlling it through the POTS side. SO I've been living with this pain 24/7 for a year and a half and it is miserable.

There has been a lot of information getting out about POTS with astronauts coming back and haivng fainint disorders. I think it is great that more awareness is being created but for me most it hasn't seemed to really apply to me and I don't know if it is because of the way that the condition was started for those people compared to us.

I've been having problems with wanting to eat...I DO EAT even though I feel like I have to gag it down. How many other people have this problem and what do you do to help with it? It is so hard to enjoy eating anything lately, please help!

So the head pain is related to EDS?

I have constant head pain and have for a year and a half

I've had a couple of echos and every one has came bck completely normal.

I also had retention on the midodrine also. I would mention it to your doctor.

I couldn't stay on the midodrine because I got about every side effect from it.

I hope that it gets all figured out for you!

I have major problems with having no appetite but it is important for my POTS to keep my tank full. SO even when I don't feel like I want to eat and have bad nausea I still make myself eat just enough of what my body needs. It is very hard I will admit and sometimes my body will reject it and I will get sick anyways but at least I'm getting some of what my body needs for nutrients. I've never really took any meds for nausea but I'm wondering if I should now.

Same for me... don't feel like my friends and i can be close with all of this POTS stuff going on but it is getting better becasue I try to have people over every other week to watch movies and talk. It's hard because I always feel like I'm struggling to stay in the loop with all of them and that I always have to be the one to invite them instead of them every inviting me.

BellaMia- I post positive comments all over the place too! Sometimes it feels like it is the only thing that keeps me going!

I've lost weight and I spend the school day in a wheelchair and many days I'm too weak to stand up and be acitve like i used to. I was already underweight but the loss of appetite is making it hard to maintain my weight where it is now and I've had a lot of bad side effects from my meds that have caused me to get sick a lot of the time!

Be careful with the clonidine...I was on it before and it made my symptoms worse. My BP dropped way too low and we couldn't get it back up. My cardiologist had me come in and they had to give me two bags of iv fluid and monitorfor a period of time before they could release me.

If you end up trying it make sure that it is at a time when you can be flexible with not doing anything at all and have someone around to keep an eye on you and monitor your vitals closely.

I wish you the best of luck and hope it all goes well for you!

I have this too...I think it is definetly related to the POTS. I've had these palpitations for a long time and sometimes it feels like my heart is going to explode! Not fun!

Just wondering when is all of your palpitations the worst? Mine doesn't seem to be specific at all but happens often.

forevertired- Yes I've had an MRI of my brain and a CT scan also both came back normal. They never said I had carpal tunnel or writers cramp dystonia.

I am chronically fatigued and have sleep issues a lot of the time.

My doctors now believe that the headaches are related to the POTS especially since my sister had severe headaches with her POTS spells but once it got managed with florinef she no longer got any of the headaches.

Thanks for all of your advice!

Yeah, my body seems to be getting even more sensitive to meds... I've been allergic to penicillin since I was a baby, recently i was on celexa for the syncope and I got an aleergic reaction from that and now the cymbalta.

anaphylaxing- I don't know much about mast cell disease. What is it and does it relate to having allergic reactions?

Thanks everyone for all of your posts, they have all been very helpful!

I'm in 10th grade...I'm taking it this year because of how my processing can be slower sometimes so I want to make sure I can have a good score.

What grade is your daughter in?

Yeah, that has been the hardest part for me... not pushing myself too much even when I feel decent.

Yeah I've tried talking to the conselor at school and she agrees I need the accommadations but then takes forever to get back to me about the information we need to figure out. The special ed/resource teacher has been very helpful so I think I will just continue to go to her for help with this. Thanks!

forevertired-

I've tried Skelaxin before for my head pain that I have constantly... I don't think that if I have EDS 3 that it wouldn't be that servere. I have went to see a few doctors in orthopaedics but they just said that I would gow out of it eventually. Do I need to say that I think it might be EDS? My main problem area is my wrists I've worn braces and tried pain meds with nothing helping...is that typical?

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.