Angelika_23

I can get these attacks after eating, or sometimes they come out of the blue. Very scary. Trying to "push through" usually makes it worse. IV hydration works for me sometimes. One time I had a very bad attack at a friends house and downed a very large glass of water quickly and ate some salty pita chips. That seemed to make the attack less powerful, but it still knocked me back quite a bit for a few days.

I have been diagnosed with Chiari. This was at the beginning when we were trying to figure out what was going on with me in the beginning. I saw a neurosurgeon who wanted me to schedule surgery ASAP. I was very scared, so I saw another reputable neurosurgeon and he did some more testing and said absolutely not. After that, I felt I had to get another "tiebreaker" opinion. The third doctor gave a resounding "No" as well. I was relieved and sad. Relieved because that surgery is major and I was afraid, but sad because I wanted and needed answers and Chiari seemed to fit well. I am really glad I sought other opinions. I was told that surgery often doesn't work and has to be redone more than once. I would hate to have done that and get worse or not better.

Try drinking a large glass of water quickly. My doctor told me to do this when I have that problem and it helps! I had a bad POTS flare a couple months ago and I drank a large glass of water and ate some pita chips with salt and after about half an hour things had calmed down.

I had a brain MRI and was diagnosed with Chiari I Malformation. That can cause some odd things, but they deemed mine too minor to be an issue. It is something that you could rule out, though.

Good Luck,

Angela

I see Dr. Grubb and Cleveland Clinic. I have to say CC has been more helpful to me in that they have done more testing and found things out that I would not have known otherwise. Dr. Grubb is a good man and a great doctor, but I felt like he just wanted to keep giving me pills and SSRI's and I felt like I needed to figure out what was wrong FIRST before taking meds because I am very sensitive to them. On subsequent visits, Dr. Grubb did spend a lot of time talking to me about the test results from CC, which I appreciated because I could understand them a lot better. He did change his strategies based on the testing CC did, so that makes me think the testing IS important. Dr. Grubb is very compassionate and understanding, as are the doctors I see at CC.

I second what mwise says. Dr. Shields is great. I haven't seen his NP yet, but will when I go to CC next week.

I believe Sunfish has a thread called "The Vanderbilt Chronicles". You can search for it and read about her experience. I was invited to go, but have not elected to do so yet.

Angela

Dr. Grubb is at University of Toledo. I am not sure how long the wait is for Cleveland Clinic for a new patient. It seemed like when I called the first time, I got in within a month... But that was several years ago. If I were you I'd call now and find out the wait time, not wait until you decide you want to go and then call. There will most surely be some kind of wait. As someone else said, you can always make an appointment then cancel it later if you don't need it.

Good luck

Angela

I believe CC has this test also.

Hi,

I am on Metoprolol as well, and it is the only BB that has worked for me. I was so fatigued before they put me on it I didn't notice if it made it worse. I have not heard of the drug you are on, sorry.

Good luck,

Angela

Anyone use Tamiflu before?

My children have all been on Tamiflu. They did fine on it. My oldest son got H1N1 and nearly died (he was out of town with his dad in the beginning, so it was too late to start Tamiflu when he got back), so when the next kid got that type of flu the doctor put him on it quickly and it was amazing.

My youngest son was just on it again a couple of weeks ago and it cut his symptoms from a week to a day and a half and the coughing and the bronchitis didn't happen. (That's the bug that is going around here, high fever, headache, back pain, coughing, bronchitis)

I have heard that Tamiflu only works if you catch it in the first 24 hours of a virus... It sounds like you've had this longer than that. If that's the case it may not do much for you.

Hope you feel better

I'm curious, how do you know if you faint in your sleep? I have had episodes where I wake up feeling like I'm falling and HR very high.

Hi, I live in Ohio, but it's southwestern Ohio, nowhere near Cleveland.

Welcome

Today, my son's physical therapist asked us if we had ever thought about our son having a gluten sensitivity. She thinks he probably has one, and is urging us to try a gluten-free diet with him and see if it shows any improvement after a month. We had skin testing last month, and it came back negative, but she said an allergy and a sensitivity aren't the same thing.

This scares me. I have no idea where to even start. Is it possible to find gluten-free bread???

I know I sound clueless, and I am really. This seems like a giant undertaking.

Help?

Are you getting too warm at night? I know if I get too hot while I sleep it can cause all sorts of freaky things to happen.

Just a thought.

Ok, so you are going to the autonomic doctors, that is good.

Testing there is done well, in my opinion. I did not feel mistreated or rushed or anything. People were very nice and understanding. Did you find a place to stay? We usually stay at the Inter-Continental (not the suites, but a step up from the guest house) when we go. They have shuttles that will take you where you need to go at the clinic. If you have AAA, that will discount your room rate at any of the hotels.

If you have an appt in Jan, pm me. I have one in January. If we are there at the same time maybe we could meet up!

Good luck!

**Oops, my appt isn't in Jan, it's in March.

I see two doctors at CC. I like them both. My cardio at CC has done the most to help me keep the HR down.

Who are you seeing, or what department if you don't want to say which doc?

The clinic is nice, the people are courteous and helpful for the most part.

Good luck,

Angela

Caffeine makes my HR increase.

Early on in my diagnosis, I was put on Cardizem and it raised my HR to 180 lying down and I was so dizzy and nauseated I couldn't stand. When my new EP doctor (at that time) heard about the med, he was horrified and made me stop it immediately. He said Cardizem and drugs like it are not good for people with POTS.

I am now on Metoprolol Tartrate, a tiny dose twice a day and it helps keep the HR under control.

I hope you find something that works.

I'm so sorry Kayleigh is in the hospital again!

My husband had his lung collapse when he was 14. He was told it was because he was growing too fast, and his lungs got "stretched" and formed a bubble and it popped. He hasn't had anything like that happen again, so hopefully this will be an isolated event for Kayleigh.

Don't feel bad, we are moms, we are not perfect. Kayleigh will be okay.

Angelika

FMLA requires that you have worked for the job for 12 months, and have worked 1,250 hours within the past 12 months. (Or, some companies choose to use a calendar year instead of the rolling calendar year, but the same rules apply) If you do not meet both those requirements, you do not qualify for FMLA.

Does that help? (I work in Human Resources)

Angelika

sounds to me like you had a massive drop in blood pressure. That can cause sweating and nausea. Did you take your BP when you woke up? Metropolol gave me very low BP at night. I would bet it was a side effect from one of your meds...Also, I agree with Brethor9, adrenaline surges can cause me to shake violently in my sleep. I hope you feel better and know how you feel. i wake up sometimes with horrible tachycardia and dizziness. It also makes me scared to go to sleep. Lately i've been getting terrible waves of pressure in my head when trying to fall asleep so even though I want to i can't. I really feel for you.

Interesting thought... I never knew BP could cause something like that...

I only take Metoprolol tartrate, which is short acting, and I take the second dose at 2:30 in the afternoon, so I know it was not the Metoprolol that caused this issue at night.

I hope you start feeling better.

Angelika

Anna, I have been looked at quite closely for my Chiari and my spinal cord is not tethered, thank goodness. My Chiari is actually quite mild. Thanks for the thought!

Angelika

I do not have a history of seizures, ever. I am not taking any new meds at this time. I sure hope this is a one off, it was very scary. I am nauseated again tonight, and afraid to go to sleep.

Thanks everyone,

Angelika

Last night, I woke up to a wet bed. My husband said earlier my body was shaking so hard that it woke him up. After we (well, he) got the bed changed, I was really nauseated. I was afraid to go back to sleep.

Has anyone ever had this happen before? Do you know what it is or what caused it?