Angelika_23

Thanks Nina,

However, while I understand what you are saying abou the replies, I thought it was proper etiquette to hit "reply" when replying directly to a person, whereas using "add reply" was appropriate when just adding a thought to the thread.

Regardless, if you look, the last time I replied, I did not use reply, I used add reply because I was being lazy. Belonging to several forums can be nervewracking, all of them have their own rules and preferences. I will try to accommodate.

Did the Florinef help you? Or did it seem to make a difference at all?

Thanks,

Angela

He did not run a blood volume test.

I do have a cuff, I take my BP 4 times a day and log it, that's how I know it runs high.

I do have seasonal allergies, I am on Zyrtec for them, they aren't so bad right now.

Thanks for the input, I appreciate it!

Angela

I may be reaching here, but I think his nurses aren't passing on all the information to him. Everyone in that office is tired of hearing from me. And I am tired of talking to people who don't listen.

I called him because I am tachy again, anytime I am standing I am at least 120 almost immediately. I'm tired ALL the time and my chest hurts. He said the florinef will help me retain sodium and help those problems. What I don't understand is, why the Midodrine won't work anymore. It worked fine for almost 3 mos... I'm also having trouble just standing for any length of time, I am starting to fall, like my legs just give out from under me.

Angela

Oh boy,

My blood pressure does not need boosted. It always runs a bit high now...

Thanks,

Angela

Thanks Sophia!

I go see a neurologist on the 19th to see what is going on. They think I am exhibiting some neuro symptoms, but not sure what they are due to yet.

I haven't picked up the prescription yet, but we'll see what the doctor put as the dose. I suspect that he is not going to slowly work me up to it.

Thanks for the info

Angela

Hello,

Due to the latest issues, my doctor has decided to put me on Florinef. I am wondering about this decision. I read on the DINET website that people with hind brain compression should not use it. What is hind brain compression? The reason I ask is that I possibly have a Chiari I malformation and wonder if that could contribute to hind brain compression???

Any thoughts or input would be great!

Angela

Hi Angela (lol, with us having the same names, I feel like i'm talking to myself!)

How long have you been on the midodrine and at what dose? have you ever tried beta blockers or do they make you feel worse? I know with a lot of POTS patients, betas tend to make them feel worse......

how high is your tachy?

i would think that the bike test (it must be a stress test but they are having you do it with a sit down bike cuz of your tachy/symptoms??) you would probably have the same reaction that you did to the pulmonary test....what are they looking for specifically with the bike test?

I have been on the Midodrine since April, on 5mg in the am, 2.5 in the afternoon and 2.5 in the evening. I took an extra 2.5 in the afternoon yesterday.

Beta blockers make me worse after a couple of days.

120 is the favorite number. I know that's not too bad really, but that seems to be where my adrenaline kicks in and it's got me a mess with the shaking. Plus it seems to be connected to my inability to stand for long without falling.

It is a bike test for cardio-pulmonary reasons. The pulmonologist ordered it. I don't really know the specific reason why. I know the PFT was to rule out asthma.

lol, I feel like I am talking to myself, too!

Thanks for your response,

Angela

Thanks Angela

That makes sense. I was wondering...

I still don't understand why my Midodrine seems to have stopped working Waiting on my doctor to call me back. This tachycardia is driving me nuts. And I'm having trouble standing for too long without falling down.

I was supposed to have another test in about a week, with the same doctor. It involves riding a stationary bike. He now says IF he even does the test he's going to have an entire team in place. ??? I wonder if the bike will have the same effect on me.

Thanks,

Angela

Hello,

I am very tired and frustrated this morning. I was at the hospital ER until 1:15 am.

I originally went to the hospital for a pulmonary test. I hadn't been feeling well all morning, my HR was staying at 120 no matter what. I drank two liters of water, upped the midodrine, lots of salt, etc. Nothing helped. Then I went for the test. I got halfway through it and started feeling bad. I didn't get to completely finish it because I felt so bad. The doctor took my pulse, it was 140 sitting down. I was very weak and lightheaded. He said the lightheadedness could have been the pulmonary test, but the heart rate wasn't. So he took me down to the ER.

Basically, no one there was familiar with POTS. They did a CT of my lungs, an EKG and a chest x-ray, took a lot of blood and gave me fluids. Then decided it was my POTS acting up and sent me home to call my doctor in the am. We never did get my HR back to normal. The lowest was 116 I think.

I don't understand the sudden HR increase, my midodrine usually keeps it normal if I'm not too active. I am totally wiped out today. I am still having trouble walking around.

Thanks for letting me vent,

Angela

Thanks everyone.

I have a phone number of a neurologist I am supposed to call in the morning and make an appointment with. My PCP and Cardiologist got together and decided I need to see a neurologist since I am now exhibiting neuropathy. Hopefully I can get in soon.

Can neuropathy be caused by Chiari?

Thanks,

Angela

Hello,

I too am trying to work through this issue. I am seeing a pulmonary specialist. I have to have a couple of tests this month to see if I have asthma, then another one to see how my breathing is when I exercise. They scheduled that one at the hospital due to my propensity to faint under exertion.

So far I can't find anything to make it better or worse, it just is what it is, when it is. Sometimes I'm fine, sometimes I'm not, no rhyme or reason to it.

Do you know if you might be hyperventilating? I do that sometimes. Usually if I am upset about something, or way too busy. When that starts, I breathe in, hold it for 10 secs, then breathe out and hold for 10 secs for as many times as I can and usually that will calm down my hyperventilating.

I hope you get some good answers, sorry I can't be more helpful. If my pulmonary doc finds anything useful I will certainly let you know.

Angela

I had that problem... I was told it was all in my head by a neurologist I was sent to.

A couple years later I was diagnosed with Fibro. Mine seems to be a neuropathy of some kind.

What is Fibro? How do you deal with it? Does the pain go away? Did you/Do you have a lot of headaches too?

Sorry for all the questions,

Angela

Hello,

My bloodwork came back normal. So it is off to the neurologist I will be going.

Angela

Well, the skin hurting thing has spread to almost my entire body. The lightest touch hurts me. My muscles are hurting and are weak. I went to see my PCP again, and he said it sounds like some kind of neuropathy. He ordered a lot of bloodwork to rule other stuff out.

I called my cardiologist, told him about the neuropathy suggestion, and we talked at length about how I'm feeling, what's going on, etc. He said it sounds like I may have something wrong in my central nervous system, and after all the bloodwork from the PCP comes in normal I will have to go see a neurologist. He says too many different things are going wrong at the same time.

I keep wondering if that Chiari malformation could have anything to do with all this.

I get the sore scalp with sores too. I find that if I wash my hair more, it goes away faster. I have no idea what it is, or why it happens. My PCP says it is an allergic reaction of some kind. I'm not sure I am on board with that theory.

Hope you get it figured out soon!

Angela

Hello,

I woke up this morning with a "sunburn" sore feeling along my back, shoulders and arms. The lightest touch to my skin is very painful. I have not been in the sun at all. I don't have a rash. I do have a headache that won't go away. I was on an oral steroid for 16 days for an allergic reaction, it just ended on Tuesday, maybe that could do this to me?

Thanks,

Angela

Thanks Deucykub,

That was what I was looking for.

So far, I have tried to talk to my boss about the fact that I may not be able again to do the hours my job is currently assigned. I mentioned that we might need to talk about permanantly restricting my hours. She said we'd cross that bridge when we came to it. (???) What does that mean? I mean, I want to know ahead of time if I'm losing my job, not at the very end of my FMLA time.

She knows I have a problem, they have plenty of documentation, and my doctor is supposed to call her as well. Also, I fainted at work today, right in front of her (and half the building too), so unless she thinks I'm faking...

I guess the real problem is I mostly don't look all that sick. I guess it's hard to believe someone could have something wrong when they look so "good".

I am kinda confused on the "qualified employee" thing. I have been there over 5 years, I can do my job. I just can't do it for as many hours a day anymore.

I am not a federal employee. (Sounds like that's a good thing)

Thanks for all the good information. I will peruse it for sure.

Angela

Lois,

Thanks for the reply regarding FMLA.

As an HR associate, I am familiar with FMLA, and am currently using it. By doctor's orders, I am not allowed to work 40 hours (as is my job expectation) so my FMLA time is dwindling each week. After the twelve weeks are used, they do NOT have to restore me to my position, or even make my position more accommodating to me under FMLA, they can just replace me.

So, FMLA is what is keeping me employed now, but I am looking for something that will help me retain my job when my FMLA time is exhausted.

Thanks

Angela

Hello,

I think I have made myself misunderstood. I do not mean I want to go off work on disability, I simply mean is there a way, or a law, that will have my employer recognise that I have a disability and work WITH me so we can get a mutually workable solution, so I don't lose my job? I know if some people have asthma, work will bring in air filters for their desks, things like that, etc. They call it "Reasonable Accommodation", I think.

Thanks,

Angela

Well, my stress test was normal, except that I couldn't walk on the treadmill without a high heart rate and fainting. But I have no blockages or signs of cardiac disease says my doc. My labs were all good too. So it seems plain old POTS.

Where do I go from here? I still cannot function normally and my job is getting less tolerant. We are going on 3 weeks with no paycheck for me, disability isn't playing nicely. FMLA is only going to hold my job so long.

Doctor says I cannot expect a "quick" recovery (which I guess I knew) but he says it could take years to get me better enough, and even then it might not be at the level I was used to. My kids and husband are frustrated.

I am so worried about my job. I carry the insurance on all of us. I don't know what we are going to do.

On the bright side, I did mention my neuro report on Chiari I malformation, and the doctor was intrigued and promised to call the neuro and touch base with him about me. I thought that was very nice. The doctor also took my boss's number and is going to call and talk to them about me and my condition and what they can do to accommodate me.

Does anyone know if this situation qualifies for ADA?

Thanks,

Angela

Well,

They said the "nuclear portion" of my test was fine. What does THAT mean???

I am going to see the cardiologist on Friday, so I guess I get to wait until then to see what the rest of it means.

Thanks,

Angela

Hello,

Back in 2005 I was having some issues and a neurologist sent me for a "symphony short bore MRI of the cervical spine". I remember how much the report scared me when I read it, it said at the bottom, "Beaked configuration of the cerebellar tonsils with mild inferior displacement of the cerebellar tonsils. Findings are consistent with Chiari I malformation." The neurologist at the time said he didn't see it, it wasn't an issue.

A few days ago I saw the possible connection between POTS and Chiari I malformation, and I went back to the hospital and got the report and I am going to give it to my cardiologist when I see him on Friday. I'm not sure what good it will do, but I want to make sure I am doing everything I can do to get myself taken care of.

Anyone have any other suggestions?

Thanks,

Angela

Well, I do know that I don't catch poison ivy, and my doctor said that it was eczema, probably stress induced.

I am on an oral steroid, and it is starting to go away. My hands are now clear, and my face is fading and the swelling is mostly gone.

Thanks,

Angela

Hello,

I have had eczema on my hands for a few weeks now, actually ever since right before my diagnosis. It hasn't gone away. On Wednesday, it came out in all it's glory on my face as well. I look horrid, and it itches sooooo much! Does POTS have a hand in this, or is this just something else that is going wrong with my body, does anyone know?

I went to my PCP and she put me on a steroid for it. I started taking it this morning. I hope it starts working soon. I (normally) have a very fair complexion, so it's REALLY obvious that something is wrong with my face.

I can't take Benadryl or anything like that because I already take Zyrtec for allergies. I bought some Aveeno stuff, but I think it is actually making the itching and redness worse.

If anyone has any insight, I'd love to hear it!

Angela

Update:

Had my test this morning. It wasn't that bad, except I went down twice. The first time I hit the floor kind of hard, they weren't expecting me to fall, even though I told them I was not feeling well and dizzy. Fell on my tailbone, that's gonna hurt tomorrow. The second time they had me stand, and I was okay until I turned to move and fell again.

In the waiting room later, a man was lamenting the time it took to get his heart rate to 132. I could have told him I hit 164 in less than 30 secs

So, they said they didn't see anything glaringly obvious on the preliminary stress test results, so it probably isn't my heart, so I will need to see a different specialist for the chest heaviness, shortness of breath and fainting. I will get the final results in a day or two.

Thanks everyone who posted and made me feel more at ease about this test!

Angela