Angelika_23

DRINK!

Stay in bed as long as you need to, but do try to sit up at least some or it makes it worse later. I find that one day in bed, plus two or so days on the couch help me recuperate the best.

I do this too and it stinks. You have probably overdone it somehow. That is my professional opinion.

Feel better

Angela

Lately I've been having some trouble with my vision. I get spots in it that are annoying, sometimes I see faint "doubles" when I am reading or working on the computer and today I started seeing pink in my peripheral vision. My eye doctor said my eyes are showing signs of too much fluctuation in my BP, but he wasn't overly concerned.

I am also having muscle twitches in my eyes, mouth, fingers and legs. This has been going on for about 3 weeks now, so it isn't just "one of those things" that will pass. I am having periods of pain in my legs where it feels like they are going to give out suddenly when I'm walking. This too comes and goes.

Anyone know what to make of these things? I am trying not to worry too much before my CC appt next week.

Thanks,

Angela

I went to Vanderbilt, not as a research patient though. I had a very good experience. They spent time with me and explained things that no one here did. Vanderbilt is where I was told I am hyperadrenergenic.

Good luck,

Angela

I can't answer your question, Persephone, but wanted to clarify a bit.

If you have to go to the hospital, will the trip be covered EXCEPT for the cardiology consult? Like, your room and board etc? Because that will make a big difference. A hospital stay is quite expensive, but if they pay all of it except the cardiologist then that is more affordable.

I know my office visits are less than $100 to see my cardiologist in his office, but I have no clue what it costs if he visits me in the hospital.

Thanks,

Angela

I used to be a dancer. POTS took that away from me. I am still grieving that loss.

Hello,

Just wanting to chime in. I do have a chiari malformation, but the doctors say it does not factor into my dysautonomia. My chiari was diagnosed by an MRI.

Good luck,

Angela

I get back pain when I am starting to get dehydrated. Lots of fluids and rest will help clear it up for me.

Angela

His blood count was up a little, but nothing else showed up. The IgE tests aren't back yet.

Thanks for asking!

Angela

Even with pills you don't always get a normal life.

I take Toprol XL for tachycardia and it does help some. I can still get high heart rates during exercise and sometimes for no reason at all, but at least it isn't constant. My BP does not drop, so the beta blocker is fine for me. I don't have any side effects from the Toprol. So far it's been the best thing anyone put me on.

Good luck,

Angela

Issie,

No, he hadn't done any of those things.

Poor kid is practically terrified to eat. I hope they figure something out soon.

Thanks,

Angela

Julie,

He tested positive for all tree pollens and for all 13 fruits they tested him for. He did not react to grasses, pet dander, etc. They tested the pollens, grasses and dander one day and the fruits two days later.

I wonder about the skin thing. I cannot handle peeled fruit, it breaks me out but I can eat it just fine. I thought it would be the same for him, and until the second apple thought that is what it was.

He has no health issues. He's the healthiest kid I've got. Aside from mild intermittent asthma that only acts up when he's already sick, and the H1N1 nightmare last year he's fine.

It is really odd. He reacts to a nectarine which I can maybe see because those aren't common for our household. But then he eats an apple a couple days later and is fine. A couple days later, the evening of the skin testing he eats an apple and has a reaction...

Thanks,

Angela

Hi Julie,

It IS frightening! And no, he has NEVER had any allergies to foods at all! Now all of a sudden it is to all fruits! He does have the usual seasonal allergies that our whole household has, but nothing more. I don't remember him running around before eating the apple this last time. I think he was on the computer and got it for an evening snack.

Our family doctor says that maybe he is allergic to nectarines (which were the original severe reaction) and it has sensitised him to all fruits temporarily. Both the allergist and the family doc have ordered bloodwork. I wonder what they are looking for...

Thanks,

Angela

Thanks Firewatcher,

You know, I am terrified of the epi-pen since no one really told me how to use it. I have read the instructions over and over, but feel let down by the allergist who casually threw the prescription at me.

Hello,

My 17 year old son has never had food allergies in his life. Ever. So almost two weeks ago we were visiting a friend and she cut up a nectarine and served it. My son ate one piece and his tongue felt numb. Being a teenager, he decided to ignore it and eat more. His throat and tongue started swelling. We gave him Benadryl and my fingers were on my phone to dial 911 if needed. His throat did not swell shut, though his voice was funny because of all the swelling in his throat. I took him to an allergist a couple of days later. They did skin testing earlier this week and decided he is allergic to most tree pollen. They asked us to come in yesterday with some fruit to skin test that. He tested positive to every fruit. Stupid things like grapes and apples...

Anyway he had just eaten an apple 3 days ago and did fine. He ate one last night and his lips itched and he got chest pain, etc.

I am going out of my mind. I don't understand why he is able to eat an apple three days ago but can't eat one now without a serious reaction. We've had to get an epi-pen for "just in case".

Will he start being allergic to vegetables next??

Advice welcome

Angela

Hi,

When I take my BP with my wrist cuff, on my left side it is always a little high (130/80 or so) but when I take my BP on the right side, it is a little low (114/64 or so). Is this normal? It is just odd that one side is always high and one side is always low. What do you guys think?

Angela

Happy 4th everyone!

I have been waking up the past several days to a bright red face, tachycardia and what feels like "skipping" beats. It is very uncomfortable. My BP is low normal. I have no clue what is going on, or why it just started. I do notice that my allergies seem to be very bad right now, but that is it.

Angela

Sounds like you are hyperventilating. I had this problem until the doctor put me on Klonopin. I don't know why it happened, but the Klonopin seems to make the breathing better and the adrenaline surges aren't quite so bad.

Angela

Chaos,

The therapy is for a knee injury, not for my balance. My bad balance is not caused by the knee injury, the terrible balance actually contributed to the knee injury. My balance issues occur when I am in the midst of a POTS exacerbation.

Dr. Grubb's office prescribed the walker for my "bad spells" and there is no plan to wean me off of it. I don't use it all the time, just when things are bad.

The therapist was just giving me her opinion on what she thinks is appropriate for me. I don't think she understands how bad my balance is. Or what POTS is.

Dizzysillyak,

I did horribly on the Romberg (sp?). My balance isn't always bad, so I don't think my diet is a factor because I am so sensitive to changes, I rarely eat differently. I usually get like this around my period, any illness or being too tired. Right now I have a cold and I'm very tired.

Thanks everyone

Angela

Hello,

I have a walker for those ever increasing "bad days". My balance is very fragile and I've had a lot of bad falls lately. I fell again on Saturday.

Today at physical therapy (for the knee I injured in the fall in March) the physical therapist told me I am too young for a walker and should only need a cane for balance. Does this sound right to you? I am like a pinball at times, bouncing off one wall after another. I don't feel like a cane would help stabilize me. Now I feel self-conscious about using the walker again.

I really really wish I could figure out what is causing all the falling. I am tired of it and am waiting for a break or fracture to happen. I'm lucky it hasn't happened yet.

Angela

Hopefully this will get better. Every time I get a respiratory bug I get similar symptoms and it is awful. Try to keep your fluids up and get as much rest as possible. I know it feels like the world is ending, but it will pass. The more you take care of yourself, the sooner you'll start feeling better.

Hugs,

Angela

Does anyone know how long it takes to get the serum tryptase results back? It has been a week and a couple days and my doctor's office does not have the results back yet. Hopefully someone knows and can save me from harrassing my doctor every day.

Thanks,

Angela

I was on Cardizem for a couple days and it made my POTS much worse. HR in the 180's, dizziness and nausea. My doctor said that calcium channel blockers can make POTS worse.

I do okay on Toprol XL which is a beta blocker. So I guess we are all different. Good luck with what you decide to do.

So I've been having issues with rashes, etc. I went to see the allergist today. He didn't listen to most of what I said, and told me POTS will cause such rashes. I kind of wonder if it has anything to do with four rounds of antibiotics over the past two months.

Just lately the oddest things have been happening. Mouth sores, chest pain, rashes on my chest and arms, sores on my scalp. I hope these aren't things that will become "normal" for me because it is truly irritating.

The doctor did send me for a serum tryptase (sp?) blood draw. Not sure what he's looking for. And he prescribed me Xyzol (sp?) to take opposite of the Zyrtec.

Any thoughts?

Angela

I have had great experiences at Cleveland Clinic. I see Dr. Shields.

Angela

I had breathing issues, and it turned out I was hyperventilating (I didn't know it!). I am on Klonopin, and that helps me with the breathing issues. I am not exactly sure why... One doctor thinks I am hyper POTS and the klonopin slows down the adrenaline production.

Good luck,

Angela