cvincent

Hi everyone, I haven't been on here in a while. Just wanted to update you on what I found out during my appointment with a doctor from U of M. I thought that they might want to do more tests and such but it ended up just being a regular appointment. I seen a cardiologist who is a sub-specialist in POTS. He didn't really have a lot to say, but did suggest that I wear compression hose and increase my salt and water intake. He also wants me to eventually go off all of my meds. Now, when I went to Mayo in 06, they told me NOT to increase salt due to my high blood pressure. I also have tachycardia along with the high bp and that is why I am on the beta blocker. However, he thought that if I went off of my meds, then I wouldnt have the side affects, especially from the beta blocker, which makes me tired/sluggish. He told me I will just have to monitor my blood pressure and heart rate. So overall I guess I feel good about the appointment. I like the idea of going off the meds, however I am a little concerned about how high my heart rate and blood pressure will go. Before I went on the beta blocker I ended up in the ER twice in the span of 5 days because my bp got too high. So I guess I will have to wait and see. I already got fitted for my compression hose and will be picking it up tomorrow. Also, since it has been warmer out, I have been feeling quite a bit better than I did this winter. My symptoms seem to improve with warmer weather . I will be going back to U of M for a follow-up appointment in a couple weeks. Hope everyone is doing well, Candace

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? - yes 2. Have you ever been diagnosed with EDS or suspect that you may have it? - have not been diagnosed but have suspected it 3. Do you experience symptoms when lying down even after a night of sleep in your bed? - yes 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? - no 5. Have you ever been informed by a doctor that you have low blood volume? - not yet 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? - yes 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? - yes 8. Did your POTS arrive suddenly? - yes 9. Is your skin pale? - yes 10. Please the top 6 worst symptoms that you experience with POTS: - fatigue/exhaustion, palpitations/tachycardia, pain everywhere, nausea/loss of appetite, pre-syncope, chest pain/shortness of breath

I was diagnosed with severe sciatica this past fall. I had an x-ray, MRI and blood work done. The only thing they could find causing it was inflamation.

I haven't actually thrown up yet, but I do get really bad episodes of nausea that are accompanied by dry heaving. I have had this ever since I became sick. It was the worst symptom I had for the first year of being sick. Candace

Hey everyone, I just wanted to let you all know that I had a great day today. Me and my mom and twin sister, ( who came up with her husband to visit ) went out for lunch and went shopping at the mall today. I had my wheelchair delivered on thursday, perfect timing. I took my wheelchair today and my sister pushed me around while we shopped. I had so much fun. I haven't been able to do this since before I became sick. Without the wheelchair I would have had to stay home. It did wear me out being out so long and it was hard to sit for such a long time, but it was all worth it. I felt truly happy today. I haven't felt that way in a very long time, and I think it's because I felt like I actually had a life. I felt like myself again. So yeah, it was awsome. I'm so thankful that I was able to get this wheelchair so easily. God's taking care of me. If any of you are considering getting a wheelchair, or are having trouble deciding because you feel like you would be embarrassed, I want you to know that I was in the same position. But today when I was able to be with those I love and do things that I haven't been able to do in such a long time, the thought of being embarrassed went completely away. I was so happy that I could get out and live my life that the thought completely disapeared. It was soo worth it. Candace

Suzy, Since I became sick, especially lately, I've noticed that it takes me longer to realize how hot things are. I usually can't feel how hot things are untill they are hurting my hands. I have to be careful whenever I'm taking something out of the microwave or when I'm cooking. Just yesterday I had my moms straightener turned on and I touched it to see if it was hot yet. I couldn't feel the heat untill it started almost burning my fingers. Also, whenever I take a shower I have to have the water turned almost as hot as it will go. I can hardly feel the heat from the water, and when I can it doesn't feel hot enough. Maybe all this is related to nerve damage. Who knows. Candace

Hey everyone, I ended up taking my script to the medical supply store. When my mom and I got there the lady beind the desk immediately recognized my mom and vise versa. They went to high school together. So the day after we dropped the script off, she called me and told me that the chair that my doctor prescribed was going to be really hard to get because my insurance was going to make me jump through hoops to get it. She told me that I had to have my doctor do all these things like writing a letter, having an annual script, and a couple other things. So by the time I got off the phone I was already fighting back tears. I've been so much worse lately and have basically been confined to my house. Well, about 10 minutes later, I hear the phone ring. It's for me, and it's my mom's friend from the medical supply store. She tells me that she actually found another chair, not the exact same one that my doctor ordered but only 2lbs difference in weight. She said that because the other one was a custom chair, insurance was going to make it really hard for me. But this new one she found, was actually listed as a standard chair. But the only difference was 2 lbs! I asked her if my insurance would cover it, and she said they did, no problem. They will call me this week when it comes in. She told me that because the other one would have taken 6 to 10 months to get approved for she thought this one would make more sense. How awsome is that? what an answer to prayer Candace

I became sick after an episode of anaphylactic shock that put me in ICU for three days. After that I was never the same. ( and we still arent sure what caused the alergic reaction ) Candace

It was my PCP that gave me the results. I do have an appointment in June with my sleep doctor, maybe they will figure something else out. Thanks for your help Candace

So some of you may recall my post a while back about my sleep study. My sleep doctor had suspected narcolepsy and after we got the sleep study results back they told me that I didn't have all the signs of narcolepsy, but I did have enough to still suspect it. So then they had some of my blood sent to Mayo to look for genetic markers for narcolepsy. Well at my doctors appointment yesterday I found out that I apparently have narcolepsy. weird. They can't really treat it at this point because I ended up not being able to tolerate the one stimulant that was safe enough for me to take. Oh well, I guess it's good that I don't have the more severe symptom of falling asleep during a conversation, or while driving. ( I still think it's weird that I have narcolepsy, without having those symptoms ) Candace

I have noticed the same thing. If I get less than 8 hours of sleep I tend to feel better during the day. But here's the thing, I can only do this for a couple days before I crash. So is it worth the few days of feeling a little better? or is it better to just forget about it and avoid a crash? hmm, I can't seem to find any common ground with this. oh well, that's how it goes I guess. Candace

Thanks EarthMother, that info is very helpful. My doctor did write a prescription for an ultralight-weight. I'm really hoping to get this. I have been stuck at home for so long now because I can't get out anymore. I did manage to get out of the house to go to my doctors appointment yesterday, but after walking only 50 feet ( which was pushing it ) the nurse said my heart rate was 160. The most I can do without making myself really sick is getting around my house, and I have to rest just from doing that. I am really hoping for the ultra light weight because I'm only around 97 pounds. I hope my insurance will cover it. I have medicaid/molina . I will have to call them like you suggested and see what they say. Thanks again for your help, I'll try to keep everyone posted. Candace

Dani, Since I was diagnosed four years ago, I have only gotten worse. That doesn't mean that you will though, everyone's different. We just gotta keep fighting. hang in there, Candace

ok, thanks Candace

Hey everyone, My doctor wrote me a prescription for an ultra-light wheel chair yesterday. I was wondering how long it takes to get one once I'm approved? He said it will take a while. Any input would be great. Thanks Candace