Angelika_23

It may be just me, but I think Heelys are the worst invention ever. I think in a couple years, they are going to start seeing kids with foot and/or ankle problems from them because of the way they have to stand to get them to roll.

I have balance issues, so I would not be a good candidate for shoes with wheels.

If you decide to get them, have fun! (But be careful)

Angela

Sorry if there is already a thread on this. I did a search but didn't find anything.

I am noticing that in the past couple days my HR goes way up after I eat a meal. I just ate a bowl of rice and veggies. And drank some water. Does anyone else have this problem? What do you do about it?

I am also on my monthly cycle, so I didn't know if that has anything to do with it.

Thanks,

Angela

I guess I just want a solid diagnosis, and I would like some relief from these symptoms. I refuse to make peace with them - I'm not at that point in my life yet. I want to swing dance with my husband again, I want to teach my little one to ride his bike, I want to fly kites with my children!

I know I'm a newbie, and a lot of you have suffered more than I can imagine. I respect that.

I guess I just want some validation.

Angela

My concern is that my job is already on the line, and as much as I would like to be selfless and help all mankind, I need to know if this would benefit me. Would I finally get a diagnosis? Would I get treatment? Or is this truly just gathering research?

I would have to go off my meds, which will be pure ****, and stay in a hospital far from my family for an extended period of time.

I hate to sound selfish. I'm not normally a selfish person, but I am so frustrated with how things are going. I am so hoping this is the break I need.

Angela

Hello,

My test results from the LP came back very good. No MS, no cancer, no lyme disease, etc. Also no idea what could be causing the problems. Everything was negative.

The neuro backed out on her promise. She will not refer me to anyone else. She told me to go back to my family doctor and start from there. She also told me she doesn't need to see me anymore.

Just wanted to give everyone an update.

Angela

Hello,

I have been contacted by Vanderbilt to participate in autonomic research study. Huh. I guess even though I didn't meet Mayo's criteria, I met someone else's.

Does anyone else know anything about how it works? What I can expect? Should I even do it?

Thanks,

Angela

Hello,

Still having issues, but no more 170 HR's. I almost feel like I'm back where I started in April. I don't understand. My chest is tight, Can't walk very far, still tachy but only in 120's or so.

Neuro says it's not their issue, so I called my cardio. I see him tomorrow. I get my LP and blood test results next week at my neuro appt.

Angela

No, the ER doc did not offer any explanations. And now that I am home, my HR has decided to mess with me again.

This was something that happened quite a bit for a while, then the Midodrine and Florinef kept it somewhat controlled as long as I didn't get sick, start my period, climb stairs, vaccuum, do laundry or exert myself too much. Even then, just lying down would bring my HR back down somewhat.

That's what I don't understand. I haven't skipped my meds. The only thing that is different is that I have had a headache since Friday that I can't get rid of. Could the headache be doing this?

My husband is a wreck, he is threatening to start calling doctor offices tomorrow morning and yelling at people. I'm afraid he will do it. I understand he is stressed, but yelling at the medical people will be counter-productive.

I get my lumbar puncture and bloodwork results next week. (Unless my husband makes the neuro mad and she drops me) Don't get me wrong, he is a wonderful guy. He's very stressed and worried about me, and thinks the doctors are giving me the run-around. Like the ER, they wouldn't give me a reason why it happened, they just told me to follow up with the EP doc.

Angela

Hello,

I was at work, eating lunch in the cafe when I started to feel a bit "off". So I went back to my desk, and by the time I got there my HR was 164 and climbing. I laid my head down on my desk but it didn't help. It just kept climbing. So a co worker took me to the ER. They gave me 5 mg Lopressor by IV, and that got me down to the 120's. I got an IV, and they finally let me leave when my HR was hovering around 102. I feel like someone has beaten me, my chest hurts and I'm afraid it will happen again. I haven't had anything like this happen for a while. I don't know what brought it on. I haven't forgotten any meds, I wasn't upset or anything.

Sorry, just venting.

Angela

Hello,

I did call my PCP and he said unless my fever goes higher, not to worry about it. This morning, my head is all clogged up so I think I may have gotten a head cold.

Thanks for all your replies

Angela

Hello,

I am SICK. I feel awful. My tachy is coming and going and I am starting to run a low grade fever. My husband is afraid I have an infection or something from the LP. I am wondering if I just caught a virus or something at the wrong time, or maybe it's just POTS rearing its ugly head.

Does anyone know if this testing can cause our bodies to revolt?

Thanks,

Angela

Hello,

The dreaded lumbar puncture has been done. My back HURTS. But my head isn't so bad. I did have a headache at first, but I drank Coke (Thanks for the tip Joline) and it got better. The headache isn't totally gone, it's like it is waiting in the wings. When I get up, it gets worse for some reason.

The doctor said he had to use the biggest needle. He was entirely too jolly about the whole thing. He told me every single thing he was doing. I didn't really need to know how big the needle was. He told me since he had some trouble, and the needle was bigger, that my back might hurt more.

They also took blood and said they were testing it for a lot of things. The only thing I understood was Lyme disease. Hmmmm...

Thanks everyone for all your support!

Angela

Thanks everyone,

Sophia3, I am having one done because the neuro is suspicious of the "viral meningitis" I had about 5 years ago, just about 6 mos before my symptoms started. She thinks I might have something in my spinal fluid (?) that might be causing all the problems. I'm not sure how I feel about that. I'm not sure what the treatment would be for that.

I am still pretty scared, but my husband is able to work from home, he just found out, so I won't be home alone.

Thanks everyone for your encouraging words!

Angela

I am to have a lumbar puncture next week. I am not looking forward to it. Originally, I was told it was going to be done in the afternoon, I would have to lie flat for a couple of hours, then I would be able to go home (with someone driving me). Okay. Then, I talked to the nurse of the doctor who is doing the procedure, and SHE said that I would be there several hours, then they would send me home on complete bedrest for several days.

My concern is that I take Midodrine for my HR, and if I am on bedrest, then I shouldn't take it. But, if I don't take it and if I have to get up to go to the bathroom or get something to eat, I will be at a very high risk for collapsing or fainting since the Midodrine won't be there to keep the HR down for me.

None of my docs want to take responsibility on this one. They all keep telling me to call another one. I finally nailed down the neuro, and am waiting for a call back from her.

Has anyone else had to deal with anything like this? I am starting to become afraid.

Thank you

Angela

Hi,

Are you on birth control pills? My sister had that happen to her, and they said it was her birth control pills. She had to stop taking that kind and start something new. Her bruises did not hurt, either, and they were little and round.

I may be way off base, but that is what I thought of when I saw your post.

Hope you get it figured out.

Angela

Hello,

Over the past five days, I have suddenly developed nausea and bad indigestion. It gets worse when I eat, and when I get up in the morning. At times, I feel like something is crawling up the back of my throat. I just did a pregnancy test, as the only times in my life where I have felt anything like this has been when I was pregnant, but the test says negative. Which is fortunate since I had my tubes ligated three or four years ago.

Anyway, I have been on Protonix 20 mg for a long time, not sure why it has stopped working. My neuro did put me on Imipramene about a week and a half ago, that is the only med change.

I am all ears for any suggestions!

Thanks

Angela

Friday,

I know just how you feel. My little one, when he was a toddler, almost died in my arms. He was actually blue and unconscious and I had to do rescue breathing, etc. He's seven and healthy now, but you never forget... Even now, if I'm around someone who even sounds like they are having somewhat labored breathing I tend to overreact.

My escape is to read. I love to read, and I can lose myself in books. It is better to get uplifting or funny ones, though, and not gruesome mysteries or Stephen King novels. After reading for a while, I find that my panic is pretty much gone and I can go to sleep.

Are you on any meds that might help you with this reaction?

Good luck,

Angela

Dari,

I get that too. As a matter of fact, I am having that problem today. I woke up this morning feeling TERRIBLE with my chest hurting and my HR up. The HR went down after my meds, but the chest pain stayed. I took some ibuprofen, didn't help. I find that when I rest and take it easy on these days it eventually goes away by itself. I also wonder about food. I ate dinner late last night (I had to take my son to the hospital for a sprained ankle it turns out) and I wonder if eating so late may have something to do with it.

Hope you get some relief soon!

Angela

Angela (cardiactec)

Thank you so much for trying to help me. That was extremely nice of you.

I don't know what I'd do without all of the wonderful, supportive people on this forum.

Angela, I hope you got to reschedule your appointment to a time that worked better for you.

Angela

I called at 11:20 and the appointment was already gone. So now I have one for July 8, 2008. I'm glad they let me make the appointment, they had a problem with my referral. The nice lady that answered the phone told me to call as much as I want and she'd try to move me up as much as she could.

Thanks anyway!

Angela

Hello,

I haven't been called back yet, my referral was sent to them last Wednesday. I wonder if I could call them tomorrow and ask about that appointment, or would that be too forward?

Angela

Hello,

Appointment wasn't too bad! I took a friend with me so I wouldn't feel ganged up on. She liked the doctor, but not the nurse.

Anyway, they have decided I need a lumbar puncture! I am not happy about that. In fact, I am terrified. But she said after the results of the puncture come in, they will decide where to send me. She said she really wants me to get into Mayo because their lab is superior, but if they decline me a second time, she will refer me to Cleveland.

I guess they want to make sure nothing abnormal is running around in my spinal fluid. I think she was thinking viral stuff. Since meningitis seems to have started it all.

I feel better, anyway.

Thanks everyone!

Angela

Thank you for the nice posts!

The neuro called me today, they want me to come in tomorrow afternoon. Isn't that odd? They told me it would be three weeks out...

So, do I tell them I went around them and got the referral to Dr. Grubb, or just play dumb about it?

I have a feeling this isn't going to be a "cozy" visit. They are already upset because I won't take the Effexor anymore.

Also, I found out I only have a week of FMLA left. Need positive vibes. A week is NOT enough time to get a proper diagnosis and treatment plan. Heck, I'm looking at next June for an appt with Dr. Grubb.

Angela

University of Cincinnati. It's a lot closer.

Yes, I didn't understand why the test was done that way. But, I was kind of glad because they didn't give me nitro...

I am going to take my time looking for a counselor, and then I have to get my insurance to okay it. So it could be a little while before it all comes together. Just like with my diagnosis.

Angela

Hi,

I did have a tilt, it was read as negative, even though my HR did reach 152 for a short period. Mostly it stayed at 125, but my baseline was 101 so it wasn't a 30 bpm increase. I was on all my meds and had on my compression hose for the tilt, so I don't know how reliable that test was. I have seen two cardiologists, but this is my PCP referring me, so I don't know how much info he has to share with Dr. Grubb. Hopefully he won't share that he thinks I'm nuts. I hope I don't get declined from Dr. Grubb too.

I know the Midodrine is helping, but I don't know about the Florinef. Seems about the same as before I started taking it. But I'm afraid to stop it and see... I am afraid to deviate much with any routine for fear of symptoms flaring. I did increase my water and salt intake. As I am able to get out of bed most days, I would say things are helping- but my kids and family are tired of me being sick all the time. Apparently it's not my turn to be sick anymore.

I called Dr. Grubb's office, the person there said they usually turn stuff around in a couple of days. Hopefully by the beginning of next week I will know something. She also said if I keep calling every week, there is a chance I can grab a cancellation and get in earlier. She did say I cannot see the nurse practitioner until after I've seen Dr. Grubb.

Angela