mully2014

My file was sent to Dr. Grubb in the beginning of November and they still have to start reviewing my case. Has anyone else had their file reviewed by him and about how long does it take? I really want to know what suggestions he would make to my cardiologist for my treatment plan. Hoping to hear from them soon and hopefully he himself will have reviewed my case. Please let me know what I should expect!

I have this problem because of the weakness I get form the POTS. I can barely sit up on my own sometimes let alone hold something up. I noticed major weakness start a while ago when I tried to brush my teeth and my body was too weak to do it and I ended up dropping the toothbrush. It last for a few hours where a just had to lay there because my body wouldn't let me do much more than that. I don't normally have the weakness to the extreme of barely being able to hold myself up but it does daily to some degree.

I hope you get it figured out.

I'm 16 and that would be great to get together! Keep me updated!

Weird to hear someone has had the same side effect as me on it...I had halucinations too! It also made me extremly tired and didn't improve my headache.

It is totally normal to feel this overwhelmed...it's a lot to take in and it changes your life. I've seen that it helps some people to go gluten free especially if they have GI issues. Adrenaline surges make me shake and feel really weak. I guess they could feel like mini panic attacks some of the time. WIsh you luck in figure all of this out!

I get the weakness all over and I will feel so weak that it feels like I can barely hold my body up at all. I can't walk, hold my arms up, and sometimes I can hardly even hold my head up. It is a part of the POTS but I don't have any advice on how to help it because I can lay down and rest for a few hours and still feel the same. It is extremly hard to do anything when these weakness stuff happens.

I agree that for it to be true POTS you have to have the heart rate change but like Chaos said there is so many other things under autonomic dysfunctions. i would talk to your doctor about it so you can figure out how to get it treated the best. You could have POTS though and some of the other symptoms aren't noticable or there yet. Goodluck in your search!

That's great that it came back normal!!! Goodluck in the future!

Wow, that's really interesting about the ADHD... I take Ritalin for POTS and the NCS. I'm not exactly what the Ritalin does for the POTS; I guess it raises the blood pressure slightly. Do you think it would be too much on the body to drink the coffee and be taking Ritalin.

I have sleeping problems because of POTS. It ***** because I never sleep really well or get to sleep late. I've tried the meds for it but they haven't helped me. The headache that I have constantly can keep me up too. I try to rest as much as I can though even if I can't sleep at night because resting is at least better than nothing.

Yeah, I have the same stuff going on right now! I don't have an appetite at all lately but I've been forcing myself to eat anyways. I have ate gluten free meals and have stayed away from dairy for a litlle bit but it doesn't make any difference so I just eat whatever I feel like eating now so I can get something in. I used to eat lots of food so it is a big adjustment for me and my family.

I wish you luck in figuring this out I;m hoping that in good time here I will be able to eat more again!

I would definetly check with your doctor... it could be a non-convulsive seizure. I had to have an EEG to check for seizure because I shake/twitch with having the POTS stuff but its reassuring to be tested. I don't have seizures its just an adrenaline thing for me.

I've noticed that occasionally when I have coffee it will make my tachycaridia act up even more than normal but other times it deosn't seem to do anything. Any advice on how to know when to drink the coffee and when to not? I love the taste of it so I just need to figure out when it is a good idea!

Thanks for posting!!!

I can't figure out a pattern between flares either. I always have symptoms but when there is a flare I pass out more often. I wish there was a wy to know when these things are gonna happe but so far no way to tell.

I'm wondering if people have tried drinking coffee everydy and notice a difference in their POTS symptoms. My doctor had recommended it before and I had tried it and didn't notice a difference now considering trying it again. Anyone acually notice a difference with having caffine.

I drink about 6 liters a day. It takes a bit to adjust to it but now I don't anywhere without my water. I can really feel it if I don't always drink that much. I would suggest starting out kinda slow and then increasing it bit by bit in order to make the adjustment easier.

I would definetly keep trying to get it approved. Sorry you got that news today especially. Hope it all works out!

I will get a lot of those same symptoms right before I'm about to faint if I get a warning. By now I'm used to having those feelings a few times a day so I don't panic but it is never something I think you can get fully used to. WIsh you the best and hope you won't have anymore of those spells!

I will keep that idea in mind if things were to change in the plan. I know they cosidered homeschooling me last year after all of my concussions. I hope it won't have to come to that point but it's nice to know I still have options.

Thanks, I do have a great PE teacher who understands what my doctor would like for me to be doing. Yeah I was a little worried about the time limit but he seems to be understanding enough to give the credit if something were to come up or if I wasn't feeling well but still trying to get in the exercise for the class.

Last year in school I didn't take a PE class because of my condition. I ended last year in a wheelchair and I'm still in it this school year. The school wanted me to start doing workouts at home with my mom supervising to get the credits for PE. It was too hard doing the workouts all of the time at home after school when I was already exhausted and fatigued. SO that takes me to the revised IEP...now I'm going to be doing adaptive PE two times a week with a one on one teacher. I know I will be doing weight training (lots of lifting weights). And they are ordering a heart rate monitor which is a bra that has two sensors in it and then you wear the watch.

I'm wondering what other peoples experience with adaptive PE is? What you do?

Thanks!

Yes!!! Taking care of yourself is the most important thing. In my IEP I have it where the teahcers individually were going to decide if I should take the final for that class and so far a few of them have told me I don't need to take it...which is a relief because of all the head pain I experience from concentrating.

As great as it is to have relief from dizziness I wouldn't want to be on something that has the potential to change my feelings/personality. I would talk to the doctor to see what they think about adding a med or not taking the med. It would also depend on how intense/how much/long the negative side effects are.

I have lots of chest pains too. I'm not exactly sure what to do that would help it? Does anyone have any advice on how to relieve some of the pain.

Hi Eric!

I've been on Midodrine also and had just about every symptom that they know the drug can cause like the goosebumps on the scalp. For me these symptoms didn't improve but it can take up to 3 weeks to see a difference in the symptoms.

For the salt stuff, I would talk to your doctor about adding in the med florinef it will help you retain the salt ( my younger sister is on this and it works great for her).

I hope this can help and that you will get relief soon!