mully2014

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!

teachr4k: Thanks I will check out that site. It's hard for me to take more breaks than I already do because I'm always so concerned with keeping up and my teachers put the pressure on me to stay with the rest of my class which is so hard to do when you miss so much and have big gaps in your memory. Are there certain things that help with getting the extra breaks that I need without falling behind?

Puppylove: I'm so sorry that you have to work with someone that doesn't seem to understand what you are going through. I don't know why they think that it should be our entire responsibilty to get information to them especially when we can't be there to always inform them and keep up with our schoolwork. I hope you remind yourself that this isn't your fault!

I had my IEP meeting today and it took about 2 hours! We discussed lots of things and got a lot figured out. They did decide that if my work load needed to be modified that would be fine. I have finals coming up soon but I will not have to take some of them or maybe any of them. Make-up work for when I miss school related to my condition won't have to be done. Most of the people there were very accepting with this plan but as always someone didn't. Unfortunately my general education teacher that attended the meeting made me cry. She said that it should be my job and not any of the teachers job to communicate with me about school work. And went on to say I need to take responsibility. The other people were mad with these comments which reassures me that I wasn't over-reacting. The good thing is that next semester I won't have this teacher anymore. Thanks for all your support!

Thanks for replying!!! I know I'm still debating on what to do but I think I will end up doing some schooling at home. I would love to hear more about this process. And how to go about it. How does the online classes work?

Beware of Clonodine though because when I took it my blood pressure dropped even more!!! I had to be in the hospital to be monitored and had to have 2 bags of iv fluid to help get it out of my system. SO if you try it make sure you have someone around to help you if something goes wrong.

Wow! I would've never picture me at this point even after I had missed school for a few months from getting my third concussion from fainting. I NEED advice on what I should do... I'm having the same problems with my syncope but now I'm much more fatigued. I have an IEP on Friday and my mom gave me the idea of doing some homebound schooling like partial days or choosing a day of the week that I wouldn't go in to school. I'm to this point because of the extreme fatigue and because I miss so much school. As soon as I seem to catch up on the schoolwork I miss school again. Especially with all of my concussions if I get my head hit I could end up out of school for a couple of weeks. What are some peoples experience with this? I'm really stuck on what I should do here! Thanks!

1. dizzy/fainting 2. tachycardia 3. fatigue 4. pain Sorry I have 4 but I couldn't figure out which ones were worse. I also have chest pains, lack of sleep, nausea, loss of concentration, shortness of breath, sweating, weakness, etc.

I've tried it before... I didn't get any relief but take this with a grain assult because nothing has ever worked for me yet. During my appts. I found out I was very unusual (hear this a lot) because I had exess and deficient energy. The acupuncturist tried lots of things but didn't know what to do with me. However, it is nice to go to figure out pressure points that can help you on a daily basis. For heart rate stuff it is on the left hand below the pinkie finger and then further down below the wrist. Make sure when you press there you don't go too fast just push down several times slow and steady. Good luck and hope it works for you!

I was wondering if it will shorten our life spans because our hearts having to work sooo hard all of the time. I don't think directly anything has been confirmed of someone dying from it but I wonder if indirectly it can. I know that when I have a new symptom it can be very scary. Especially when I would even be laying down and I would faint.

Igail: I have NOT responded to any of my medications they have put me on and my diagnoses hasn't changed. And i've tried many meds. That is a problem i've had too is that doctors want to get rid of you when you aren't an easy fix...don't believe that just because they haven't found an immediate med that works for you that you don't have POTS. Hang in there!

Rissy2D: I hope your appointment goes well. If you wouldn't mind letting me know what the geneticist says that would be great. I think it will be really interesting about what they find out. Good luck!

Midodrine is great for raising your bp. I had too many side effects on it but it really helps on the bp end of things if that's one of your problems. I used to have a fear that it was all in my head because that was what everyone was telling me. Don't worry it isn't and they have medical proof that you aren't just making this up. You just need to have confidence in yourself even with your condition, I know it's not easy.

RunningWild- Wow!!! I think you've been reading my mind... people really don't understand. It can be very upseting that they think we are just making this stuff up. Trust me I would never want this for myself or anyone else to have to go through what I've had to so far. I used to be a major runner. One of the things I miss the most!!! I hope that you can find the support you need here!

Thanks for replying... MomtoGiuliana: Yes, that's what happened with my sister too. If I hadn't been diagnosed I doubt that she would've been diagnosed as quickly as she was. I'm glad though that my sister's is very well managed (they managed her on florinef, the first med she tried).

I'm wondering what peoples experinences are with their condition and if there seems to be any correlation with someone else in the family having something simmilar. For my family, there is many people that have symptoms that are similar. We didn't notice it until my cardiologist started all of these questions about my family history and fainting. We found on my dad's side that his parents had OH symptoms. My dad and his sister pass out from blood or talking about medical procedures (this runs off the same nerve as POTS/NCS). On my mom's side both her mom and her aunt have low blood pressure. I seemed to have gotten a combo of them but in a much more severe case. And recently my younger sister got diagnosed with POTS. I'm really curious to what other familes are going through in this manner. And whether there seems to be a common connection with if the parent has this condition the child will have it to. Can't wait to see if there is a common pattern with all POTS patients. Thanks!

I have lots of problems with finding a med that works and that I can tolerate. Certain meds like florinef and pain meds don't do a thing for me. But a med like midodrine I will have every symptom on an extremely low dose so now I can't be on it. I also went on clonodine and my bp was dropping so low I had to be put in the hospitol to be monitored and get a couple of bags of iv fluids until the med was not in my system anymore. It really is just a guessing game with what will happen. I would suggest when you start a new med or change a dose do it at a time you don't have anything planned and when someone can be there to help keep on eye on you.

OI is the same as OH. I have them along with NCS and POTS. If you have been diagnosed with POTS but have the symptoms of other OH/OI things it probably means you just have that along with the POTS. It most likely isn't going to change how they are going to treat you if you have the OI along with it. Hope this helps.

I've had lots of issues about this... doctors were telling me that it was all in my head and I was making it up and at the time I had recently lost all of my memory so I started to believe them. It was terrible I still have issues with this because people really doubt that I have these problems. I even started to see a pyschologist but every time I went in I would leave feeling worse..not a good thing. My doctor was telling me it was in my head and we just needed to figure out why I decided to do that. It was an extremely hard time for me but now I'm doing soo much better. I have confidence in myself (that started to come when I was learning more and able to remember a couple of things). I would suggest getting this cleared up because doctors WILL treat you differently because of someone saying that. I hope you are able to get this figured out.

Sue1234: Thanks I will look into it... I've been curious about this too. I have been monitoring what I eat and I see how I feel after I ate it. So far there hasn't been any correlation. My mom has a gluten intolerance so some of my meals are gluten free but it doesn't seem to make a difference. How are you monitoring how you feel in relation to the gluten?

Yes, I've had tightness in my chest along with pain. For me my symptoms have developed along the way... unfortunately not in a good way because i keep getting more and the other ones aren't getting better. I hope that this doesn't happen to you!