GingerA

To intern this quarter would include 10 hours a week in a classroom of 20 preschoolers. But the hours would go up every quarter. Some days i think I can do it but some days I can't even get out of bed. After a mini breakdown this morning I put in a call to my adviser to ask if there I could put intern off one more quarter. The main question I have is should I even stick with the major? Can I work this field after I graduate? My hubby has been great this morning with lots of ideas on how I can work this out. I just have to accept that I can't do everything I use to do. Just 2 years ago I worked a full time job, raised three kids and took an overload at school. Now I have a hard time getting the laundry done.

I guess I am just venting but I am SO TIRED of living this way!!!! Is anybody feeling better? When I got my diagnosis in April the doc said that I would feel better in 6-9 months. In that time I have lost my job because of this and now I just do not know which way to go! I have to make a decision today about interning for school. I have been working on my BA in Early Childhood but now I have to intern or quit! I just want my life back.

I was just wondering if there was any relation to the weight gain or lose and the type of POTS that a person has. For example do people with hyper POTS lose more than others etc?

Thank you Mary. I pray that I am reading the signs wrong but I just have this feeling. . .

Kate,

You described the sleep feeling exactly. I have wonderful sleep but can't wake up when I need to. Plus when I am awake I feel like I am about to go to sleep any minute. I didn't take the Paxil last night and I felt great this morning but now my pain is coming back. I can't decide which feeling is worse!

I am so sorry you are going through this. I went through something similar with my job back in June. I was also at a college that promised to work with me. Once I was diagnosed, however, my supervisor under orders from above put increasing pressure on me to quit until finally I was told to resign or be fired because I could "no longer physically fulfill my job description." I know that it is not fair (or even legal) but people are cruel. I hope that your situation turns out better than mine.

I recently tried it and I felt TERRIBLE!!! I quit after two days. I was so sleepy & depressed the next day that I could not function.

Anybody else taking Paxil? I feel like I can't wake up. Is it suppose to feel this way? I have been taking it about a week now.

Thanks Julie! I needed the pep talk!

The doc did an EKG and chest xray. They referred him to a cardiologist. But the doc totally dismissed my concerns about EDS and couldn't even pronounce dysautonomia. So. . . .

I have not had a problem with Tylenol but a friend of mine with high blood pressure said that his doc does not recommend it because it can affect your blood pressure. Maybe that is what happened to you. He uses advil.

Thanks Julie

I just hate to have him go through this. I got my DX at Mayo in Jacksonville. We have an appointment with his pediatrician in about an hour so I will just get a referral. I need some more test done too so I guess it will be a family affair.

So funny about the "Ginger from Savannah". I am only an hour from Savannah myself.

I have had symptoms of POTS since I was 16 but only got my diagnosis in April of this year. (I am now 37). The thing is now I have a 14 year old son who seems to be having the same symptoms. He started out being tired all the time. I thought maybe he wasn't sleeping but last night he woke me up saying that his heart has "beating out of his chest". OMG! I am scared because he also is very double jointed and is flat footed so I know that the signs of EDS are there too. I haven't mentioned that to him because I don't want to scare him. He has seen what I have been through and he will panic. (Did I mention that he also has OCD?!) We have a doctors appointment @ 11 today but I don't have much faith in doctors. What am I going to do?

I wear knee highs but should probably go up to thigh highs.

I really noticed as the boys reached around 2 years old. But a lot of the fatigue that I had I would dismiss as being "new mom syndrome" so I can't really say for sure. But after my third pregnancy the symptoms became so severe that I had to quit working

I had this experience as well with all of my pregnancies. But it seemed like when the symptoms came back they were worse than the time before.

I went to my first neurologist appointment today and he listened but it seemed like he was just tolerating me. They did some xrays that of course came back negative. So now what? Am I back to yelling at docs because they won't listen to me?

I feel like locking myself in my house and hiding from the entire world!

I haven't tried the PM's but that seems like a good idea. I think I will give it a try.

I am so sorry that so many of you have this problem but I have to say that I almost jumped for joy to know that I am not alone with this. This neck pain is a relatively new symptom for me and I was so scared that something else was going on besides the joys of POTS. I just went to my first neuro appointment today. He did tests but at the end of the day I got the same old "we couldn't find any problem" speech that all other docs seemed to give me in the past. Now I know that it is just "one of those things."

Something that does help me though is to put some rice in a tube sock, tie it up, and put it in the microwave for 40 seconds. It is warm wonderful relief.

The three worst are pain (which I have now in some form everyday), fatigue, and now nausea.

Wow! Lately my body hurts all over and the muscles in my shoulders and neck are so tight they feel like they are going to snap. There is a constant pain running up the back right side of my neck and into my head. the skin on my arms and legs hurts just to touch. I usually have episodes of severe pain in the winter but they don't feel like this. Those episodes feel like they are down in my bones. This feels like I am about to snap in half. Any advise?

Also, all of my joints pop when I move. Even the joints in my shoulders

I don't eat gluten or dairy and it seems to help. But I want to cut down on as many artificial things as I can. I just think that as sensitive as our systems are it is probably best not to put artificial chemicals in our systems. (Just my own theory). But I am so confused about sugar until I am not sure what to do. Any advise?

Thanks for all the responses. I did not take the Ambien Sunday night and I was up til 2 am but I was still terribly depressed from Friday when I took the first dose until late Monday evening. Then it was like a fog lifted. Tonight I went back to my Klonopin because I am so tense that my neck is in severe pain so I know that sleep will not come without help. I guess I will just have to be cranky tomorrow. There has to be a better solution than this.

I get this ravenous appetite too but usually before an episode of severe pain. It's like my body is gearing up for battle but at least I am learning the signals that something bad is coming.

I take Klonopin for my surges but the main thing that helps is watching my diet. Gluten totally out of my diet and no caffeine after noon. I know that this is not "medicine" per say but it has made a difference for me.