puppylove

Yes, gastro issues are my main problem. Eating or drinking large amounts makes me sick.

I'm having a meeting with my counselor and a bunch of other school people on Friday. After getting a lot of great advice on here (thank you ) we saw all of the acts the school is violating by the way that they have been treating me. At the meeting on Friday I get an "educational advocate" which I have never had so that will hopefully help. I will let you know.

Yes this happens to me but usually I just get a slight fever, like no higher than 100. After I warm up I feel better again.

I tried it once and didn't notice a difference, but supposedly the lady I went to did it incorrectly so i'm going to try and find someone better. I was suprised how little it hurt , I was kind of freaked out to have a bunch of needles in me . It helped my neighbor so much with her headaches so I definetly believe in it! I hope it works for you.

I have been swelling very bad latley so I stopped Florinef since that's a side effect. Well today I seriously feel worse than I have in a long time. I'm so dizzy, can't sit up for long periods of time, nausea. And high bp with bradycardia which is wierd that I keep having this because I never had before. I was on such a tiny dose of Floinef one time a day that I thought I would be ok not tapering it off.

Usually "okay". I used to say good even when I wasn't just to end the conversation, but then they really did think I was good.

This doesn't happen frequently, but it happened tonight and it really bothers me. I woke up out of my sleep shaking uncontrollably. I wasn't cold or having a bad dream. My twin sister and I sleep in loft beds that are attached and I woke her up because I was shaking so hard I made the beds vibrate. I'm sure it's not a siezure because I'm 100% coherent and I don't twitch or anything. I didn't even feel that bad, I just couldn't stop shaking. Does anyone know why this would happen?

YES! I have struggled with this since I was diagnosed with POTS. My doctor and my parents are always telling me drink, drink, drink but it makes me feel so sick. I'm sorry I don't really have any advice, but I wanted to let you know that I'm the same because I thought drinking was supposed to make potsies feel better.

Hi Puppy. I'm so sorry to hear you are going through this. I can only imagine how frustrated you must feel. And I just went to your profile and learned that your mom is fighting a battle too. What a challenge you are facing. I wish I could takeit away for you. Actually I wish I could take away this sit king horrible condition for all of us- now we're talking.

Here are a couple thoughts I try to consider/keep in mind for my peace of mind during this ridiculously horrible and crazy condition:

- this is a season, and seasons change. It won't be like this forever.

- focus not, "one day at a time" or "one hour at a time," but "one minute at a a time.". (stay in this moment)

- don't worry about tomorrow because today has enough worries of its own

On another topic, here is a link to something I read Sunday. (this new site was just mentioned today on this forum).

http://dysautonomiai...page.php?ID=106

Anyway, this talks about workplace accommodations according to the ADA- which is a federal act that is enforced in all states and should also apply in school. Take this with medical documentation to your counselor and tell them that it is your right to receive reasonable accommodations. If the counselor doesn't listen go up the chain of command. His/her supervisor, principal, the superintendent of schools if you have to.

As far as your progress in school- it reminds me of Pam's (Hippychic) post earlier this week. I think we all have lost dreams and I'm sorry. What I do know is you are one smart cookie. I've learned a lot from you this year in your posts and I'm thankful that you share your wisdom with us. You are a blessing to me and I will be praying for your wisdom in how to proceed with classes. 2 yrs, 4 yrs, 10yrs- Although it is the loss of a dream, it's just a piece of paper and it does not define who you are. And even though we've never met in person, I know you to be one of the sharpest most encouraging young ladies I've met.

Wow, thank you so much. That means alot to me and really made me feel better. I need to update my profile because my mom has recovered and she is healthy now, but thanks for saying that.I will check out that website. I'm thinking if we can work with the school and my doctor I will just keep going in homebound slowly but surely and possibly go back patrially as soon as I feel well enough.

I live in VA. It seems like the public school system here is way different than in other places because they have a lot of stupid rules here. Unfortunatley, I'm not allowed to get credit for the exercise I do outside of school for PE. I can do online PE but they say it's very hard. I could drop out of my high school and just completely switch to an online school, but that's seven online classes I don't think I could handle that. Thanks for the advice, and for reading my long posts .

I put it on the ends of my hair so it's not frizzy .

Everything was rolling along fine with school this year until today. I take four classes- math, English, science, at home using homebound schooling through my highschool and an online history course. I was going to go back to school for the classes they don't offer homebound- PE, art, and Spanish. I can't. My doctor told me not to because he I'm retaining fluid, and really I can barely manage the classes I have now considering how bad I feel. My counselor said I'm not allowed to only take four classes on homebound much longer- it's supposed to be short term and know the exact date a student will come back. Well, POTS is not short term and as you guys know there's no way to know when I will come back. She also said I wouldn't graduate for two years after I am supposed to at this pace. It's not really my main concern right now, but it makes me sad. I was supposed to graduate with all honors classes not graduate two years behind! And the last thing is my doctor is on the verge of abandoning us because we "never listen" to him. Many of the meds he has given us I couldn't tolerate and had to stop. He is the one who signs the school papers for me to get any kind of homebound schooling. I'm not really expecting anyone to know what I should do. This is just stressing me out so much and making me feel 100x worse.

I'm so happy for you! I hope you continue to feel better and better!

I totally know what you mean. With the anxiety thing, and people not understanding how bad you truly feel... One awesome thing I have noticed latley though is that it feels like people ARE starting care how I feel. They may not get it, and they may say things that make me roll my eyes (on the inside ) but I have been getting emails and Facebook messages from people asking me stuff like the results of my tests or whatever. And the teachers I got this year have so much sympathy and are trying to help me instead of acting like I'm some defiant teenager who won't go to school. I don't know what changed really because it was definetly not like this last year. I think POTS might be getting more awareness because a lot more people I talk to have heard of it! Sorry got kind of off topic.

Latley when I lay down I get shaky and woozy, and I could tell something felt different with my heartrate. I checked it and it goes into the fifties which is really wierd for me. I'm only on 1mg of Florinef in the morning. Is this normal?

I love smart water! It just tastes like really fresh water, there is no sugar or flavor but it is infused with electrolytes. Depending on the flavor, Gatorade can mess with my stomach...

Hmmm... Yes, I guess. Well... I have felt really bad and had very scary sensations and I was afraid I would die. But I don't think I have ever truly felt like I was dying. I'm really sorry you feel so bad.

Oh, I so know how you feel. Try not to stress too much, it will turn out ok. Listen to your body. If you can't, you can't.

Yep. My normal walk used to be really fast compared to how it is now.

For me, I also had to stop because of too many side effects. But, I know for some people it works wonders!

I'm always switching too. Sometimes it's different everyday, sometimes every hour.

You're Welcome! it's really close to my house too. Let me know how it goes!

Technically he is a pediatric cardio but he will see anyone.

I had a CAT scan today of my stomach. Ever since I got the iodine injection I have felt really potsy. Anyone else?

Dr. Abdallah in Reston VA is super kind and compassionate. He is a POTS specialist. The only problem is he is very very busy and hard to get in touch with.