Angelika_23

Hi everyone,

Two weeks ago I was climbing stairs for the first time in eight months. I was on top of the world!

Then I got a sinus infection and my "monthly visitor". It went downhill from there. Tachycardia started running rampant, sometimes even when lying down. I wake up in the morning with tremors. Now I've developed this "bumping" in my heart. Kind of like the feeling you get when you are startled. It keeps happening at intervals all day long. No matter what I'm doing, sitting, standing, laying down, it just keeps happening. So I called my EP cardio nurse yesterday. They had me come in for an EKG. They didn't catch any of my little "bumps", but were unhappy with my HR being 136 lying down. So they made me schedule an appointment to see my regular EP cardio doc for today. I saw him, and he was concerned. He said his attempts to help are not seeming to help so much, and I REALLY need to get in to see Dr. Grubb. I explained to him I'm on the list, but not until July. He also said I need to find a neurologist that specializes in POTS and Chiari. He still feels that the Chiari may be causing my POTS. I saw two different, qualified specialists for the Chiari, and one said definitely surgery and the other said no surgery. So now I have to find a new doc and start over.

I am having some pretty bad chest pains tonight when I am up and about. So I am laying down feeling sorry for myself.

Oh, and I have a 24 hour holter monitor on. I look like I have a unibreast. That should be a hit at work tomorrow... But on the upside, I know it has caught at least 10 of the bumps and 2 of my chest pains, not to mention the nonstop tachycardia.

Thanks for listening

Angela

Oh Morgan,

I am so sorry you are going through this. It is so easy for these medical people to totally disregard things that don't fit in the box. They aren't the ones living with these issues. There are so many of us so frustrated with the lack of understanding and caring in our doctors. What can we do to make them "get it"?

Unfortunately, we are not "normal" here, or we wouldn't be here on this board. We all understand this, but our doctors usually don't.

I don't have any advice for you. I can only say I am here, and I will keep you in my thoughts and prayers. I have no doubt you are feeling it, and hopefully you will get some help soon.

((((HUGS))))

Angela

Maxine,

I am so sorry you are having so many problems.

I was on Florinef for several months. I did not improve, and gained a lot of weight. Then my doc increased my dose, and I quickly became more symptomatic (tachy, dizziness and falling) and ended up in the ER. So after that I started decreasing my dose by quarter tabs over 6 weeks. Now that I am totally off the Florinef, I am able to do things I haven't done in months, like walking flights of steps, and I seem to be less symptomatic.

It has been suggested to me that the Florinef bothered me because my CSF fluid pressure is high (it was high when I had my lumbar puncture) but I apparently do not have blocked CSF flow according to my CINE MRI last month.

I also have to say, that I have always had problems with steroids. I cannot take a burst of them without some problems.

So, I don't know what to say to you about Florinef as some people do very well on it, and I honestly hope that you will, too.

Hopefully something in this ramble is helpful to you.

Angela

Alexa,

I thank you for your advice.

I am not going to jump into anything without lots of research and more opinions from doctors. And, as I've posted lately in another thread, I am actually doing better lately, so maybe it will become a non-issue... We can hope!

I have dropped myself off the Florinef, a quarter tablet at a time over about 6 weeks time, and I am wondering if that may be part of my wonderful changes... I was on a half pill for a long time, then it got changed to a full pill, and while I was on a full pill my symptoms really were hitting hard. After going through everything that was changing at the time, I started to suspect the Florinef. It is a sort of steroid, I think, and my body does very badly with steroids. (Is that weird or what?) So I started dropping the dose down very slowly to see what would happen.

I am hoping that I can continue to have good days like today!

Angela

Just wanted to share! I was at work and walked up the two flights of stairs twice today, instead of taking the elevator, and I am still going ok!!!

I am so thankful!

Thanks for letting me share

Angela

Pat,

Make sure you drink plenty of water when you get tachy. I found lately that if I get tachy, chugging water helps.

Angela

Okay,

Got my results back from the doctor here in Cincy. HE says my problem is mild and is not severe enough for surgery. He advised me to see a headache neurologist and follow up with my cardiologist.

I feel like someone just punched me. I thought I had an answer, and now I have two well-known doctors totally disagreeing with each other. Who is right? Is Chiari causing my dysautonomia, or do I have POTS only???

Angela

Hello,

Had my CINE MRI's today. My left ear was just pulsing in pain when it was over. I don't know if the earplugs they gave me caused that, or what. The noise didn't seem to bother me, so I don't think it was a loud noise thing.

My tachycardia decided to rear its head more than usual today, and had the techs in a fluster. They kept checking the finger monitor and moving it around. I wasn't nervous about the MRI, so not sure why it happened.

We had to drive home in a snow/sleet storm. Not fun. Made the tachycardia all the more interesting.

Am home now with a slight earache (it is slowly going a way) and a headache (it is slowly coming on).

Hopefully I'll get some results next week!

Angela

Thanks for the advice Michelle!

I saw a neurosurgeon here in Cincinnati. I really liked him. He did not jump on the surgery bandwagon so quickly. He is ordering some CINE MRI's because he wants to see the movement of my CSF. He also said I might be having complications from my meningitis I had back in 2001. If that is the case, then the Chiari surgery would not be helpful. He also said that would not be as easy as Chiari to fix. (As if the Chiari surgery is easy...)

I am waiting for the MRI's to be scheduled. Hopefully they will be soon.

Angela

Okay, now I am annoyed.

I was looking on Cleveland Clinic's website (just for fun) and noticed that the doctor I am seeing is a neurologist, not a neurosurgeon. Not only that, but he does not specialize or even seem to have an interest in Chiari! I called the clinic and asked them about it. They said I have to see a neurologist first, then if the neurologist feels it is necessary, they will refer me on to a neurosurgeon. Sheesh!

We've done the neurologist thing here, and they all ignored the Chiari. Is it possible the neuro at Cleveland will take me seriously, r will this just be a wasted trip?

Angela

Hello,

I have set up two appointments for second (and third) opinions. I am seeing a neurosurgeon here in the Cincinnati area on Wednesday, and going to the Cleveland Clinic on Thursday. I am hoping that everyone agrees, so that I only have to make the decision on where to have it done. It would be awful if all three of them had completely different opinions.

I was in touch with a person who had hers done here in Cincinnati, and it was so nice to hear positive things. Those chiari boards are terrifying to read. I think I will stay away from them.

And yes, I will ask about testing for EDS.

Thanks everyone for your thoughts and input

Angela

Thanks everyone!

My husband is a wreck - he is just about to fall apart.

I have made an appointment to see a doctor at the Cleveland Clinic next week. I can't believe I got in so early! They assured me it was a chiari specialist. I am very interested to see what he has to say.

I really appreciate all your support and advice. You are all wonderful!

I will certainly bring up the EDS thing next week when I see the doctor.

Angela

Hello,

Well, I went to Wisconsin and the doctor recommends Chiari surgery for me. He wanted to go ahead and schedule it, but I held back on that. I wanted to talk to my husband about it. Plus, I feel like I would like to hear another validating opinion before I let someone cut into my head.

What do you guys think?

Angela

Hi All,

My ears have improved overnight.

I had three tests this morning. The first one was electrodes all over, and some headphones that had static in one ear and a loud clicking in the other. It was more annoying than anything.

The next two tests were worse. The nurse took something like a pumice stone, rubbed the skin on my wrists and ankles raw, then put alcohol on them, and then attached electrodes. Then she put one on the back of my neck. Then she sent pulses of activity to the electrodes, one limb at a time. The left arm wasn't bad, it felt like tingling, no big deal. Then she did my right arm. OUCH!!!!!!!! It felt like someone was slamming my fingers in a door over and over and over. I asked her if she turned it up or something, and said no, she actually lowered it because it hurt me so much. Then we did my left leg, no big deal. Then the right leg. That did hurt, but not nearly as bad as the right arm. So now I don't know if that is normal or not, (I'm thinking not, but what do I know?)

I am getting sick on top of it all, all gunky in the chest and coughing.

I pray I will be okay flying back tomorrow. I really don't want to get back on a plane.

Angela

I made it! I am here! I only had one episode where I had to lie down in the airport. I think it happened because I was late taking my meds.

My ears really really hurt now, they started on my second plane, I think it went higher than the first one. I wish I could get it to quit hurting.

I must be at the hospital at 7:30 am for testing. Fun fun!

Angela

Thanks Julie,

My husband is not accompanying me. He is very upset that he cannot go, but this trip came about a little too quickly for him to arrange time off from work. So I am on my own.

Your post made me feel better about what to expect at the airport.

Will I be able to have my "person" stop at a place in the airport so I can buy food and/or a drink? Just wondering.

Angela

I had to have a referral to make an appointment to see Dr. Grubb.

Just wanted to let you know.

Angela

Hello, thanks for all the advice.

My husband made the arrangements, and told them I needed a wheelchair. I'm not sure how that works, so if anyone knows, please tell me. They are supposedly going to meet me at the ticketing counter??? I hope they realize he meant all flights, both coming and going.

Ha ha Sophia - I won't put gum in my ears. My appointment with Dr. Heffez is on Tuesday morning. I have to do some testing on Monday morning at the hospital.

Angela

Hello,

I am travelling to Wisconsin to see Dr. Heffez for a consultation. Does anyone have any advice on air travel? What does it do to us physically? What can I do to make it easier?

Thanks,

Angela

My report said "Beaked configuration of the cerebellar tonsils with mild inferior displacement of the cerebellar tonsils. Findings are consistent with Chiari I malformation."

I guess mine were pointy?

Angela

Oh, and I forgot, I need to add mild scoliosis to my list of diagnoses. I read that is common in people with Chiari.

Stellakitty, can I ask what symptoms you have do to the Chiari/degenerative cervical discs?

Thanks,

Angela

Hi Brenda,

I can't say that the Florinef made me dizzy, but I do think that I had a bad reaction to it. I have been on a 1/2 tab for 4 mos or so, and then my EP cardio upped it to 1 tab. For about 5 days following the increased dose, I did pretty well. Then day 6 hit. Not good. I started with almost constant unsteadiness and fainting, and for added fun, tachycardia in the 130's while at rest. At first, I didn't realize what was going on, and thought I was going through a "crash". Then I remembered the increased Florinef, and dropped back to my half a pill. The symptoms have abated.

The only reason I can think this happened is that I do react badly to oral steroids, and I think Florinef falls in that category. The odd thing is, it doesn't seem to affect me until a certain level is reached in my body.

I hope you find the answers you need to help your daughter feel better.

Angela

I sent my MRI's from 2005 and this year to Dr. Heffez in Wisconsin. He got back to me and said I definitely have Chiari, and also degenerative cervical discs. He said he cannot make any specific recommendations without me coming in for a clinical visit. Does anyone here have experience with Dr. Heffez?

At my last visit a couple of weeks ago, my EP cardio told me that I DEFINITELY have POTS, but it is secondary to some other condition yet undiagnosed. Could the Chiari be it???

I am so hopeful for some answers. I hope I am headed in the right direction now.

Angela

I don't think they are quite the same as rollerblades. You have to actually stand on your heels to allow them to roll. With roller blades, you are flat-footed. That is why I think we are going to see children with foot and ankle issues later on. Because they spend a lot of time on their heels. I'm sure that puts quite a bit of stress on the foot/ankle/legs that isn't natural.

Jennifer,

First, do you really know that it is anxiety, and not your POTS revving up? For 5 years I was diagnosed with panic disorder, only to find out this past year all those "spells" I was having were actually POTS. I am betting that anxiety does kick in when my POTS gets going, but now I know there is a reason for how I feel, a real physical reason. (Even though I have yet to get a concrete diagnosis).

I truly understand how you feel, and I wish I could take it from you. It is a horrible thing, to feel so scared and alone. I read books when I start feeling so shaky and tachy. I do anything I can to try to get my mind off it. I pray a lot too. I am trying to learn how to let go of my fear and let God handle it. I'm not quite there yet, but I'm working on it.

I have always been "the strong one" and "the good one" in my family. It was very hard for me when this condition put me in the hospital, and now to the point of probably losing my job soon. We have to learn that we do need other people, and we can't always be the strong ones. I know that sounds trite, but it's true. I kept my husband from becoming the man he was supposed to be because I had to be the strong one, be in charge of kids, grocery shopping, checkbook, car repairs, etc. Now that I cannot do that, now that I have to depend on him, he is growing in such a wonderful way. He still has his bad moments (Like yesterday, when he spent $100 filling my prescriptions) but he's a much stronger, more vital man.

I hope any of this helps you,

Take care,

Angela