I'm Home!!

[Sue]

Hi everyone

I want to thank everyone for your thoughts and prayers. This has been at the utmost my worst ever experience with this crap. I am so mentally and physically exhausted I can't even begin to tell you what happened.

Friday night, I guess I bottomed right out. It was all NCS and then the unexpected seizures??? I don't know where they came from but scared the bejesus out of my family and myself. The emergency room, same old crap. Is your wife on drugs, all her tests are coming back normal. is she psychotic?????? Maybe its just vertigo, maybe she needs attention????? Is everything ok with your marraige. what is up with these so called medical professionals??? I can't tell you how pissed I was, and am. I laid in the hospital bed for two days with doctors coming in and doing nothing but looking at my chart and moaning. While I laid there not being able to even move my head without feeling like my bed was going to tip over from being off balance. My husband finally insisted on a cardiologist or transfer us out somewhere else. They finally got a hold of Grubb, who by the way didn't return phonecalls for two days. (not impressed with him either at the moment), but where else to turn???

So now I am home, doubled up on my meds. They were dumbfounded so they told my husband to take me home and to follow up with my doctor. Now taking 40mg of Celexa, Florinef and my premorin. I am able to get to the couch and back to my bed but that is about it. I have never been so scared. Am I going to snap out of this?? I feel like it has total control over my body right now. I am off balance, weak, and heavy at the same time. even my eyes hurt.

I really need some inspiration here. Has anyone gotten this bad??? How long did it take you to snap out of it??

Happy Mothers Day to all of you!! (my family got me the microphone for the computer, it is so cool. no more typing!!) Don't think I would have managed this one, sorry so involved and long.

My deepest thanks and love to all of you

I don't know where I would go without yous,

Sue

Kelly says thank you too

[Aprilmarie52]

sue, I am glad to hear that you are back home. Fortunately I have not had an experience like that before. What did Dr. Grubb tell them? I'm sorry that you had to go through all of that, but glad to hear that you are getting better. Take care.

[Sak]

"Is your wife on drugs, all her tests are coming back normal. is she psychotic?????? Maybe its just vertigo, maybe she needs attention????? Is everything ok with your marraige."

Unfortunately, this kind of attitude is all too common. Medical science isn't advanced enough to have quick tests for our ailments; and when all the usual tests come back normal, ER doctors and nurses are wont to chalk it all up to something psychological. "Maybe she needs attention" is the most comical bit I've ever heard; yeah, people have siezures from lack of attention all the time, don't you know?

[Ernie]

Hi Sue,

I am really happy that you a feeling a bit better. What a terrible experience. It must have been very frightening not knowing what was going on.

I was sick like that for 2 years until they diagnosed NCS and POTS and got some medication. Doctors kept telling me I had nothing and I was inventing my symptoms. They accused me of poisoning myself to get medical attention.

I got out of if after I was given Proamatine but if I stop my medication I get back to fainting every time I stand up. My health is not better I am just better medically "controlled". But I can do things that I like which is better than during the 2 years where I was bedridden.

I am sure doctors will find some medication to help you out. Keep searching for someone competent.

I am sorry Dr G did not call you back. It would have been helpful.

Take care

Ernie

[MightyMouse]

Sue, I'm glad that you're home at last! I'm sure you'll be able to get more rest there than in a hospital.

That whole thing with doctors who "blame the patient" when they can't figure it out really pushes my buttons. We've probably all been there at some point or another. GRrrrr. If I wasn't psychotic on my way in the door, that just might send me over the edge!

I've never had seizures, although I've had some uncontollable shaking/shivering. I seem to go through periods of time where I'm very symptomatic and others where I'm less so, but it's always there. During my most symptomatic times, my head feels all "floaty" like I just can't get my bearings when I'm standing up...and my arms and legs feel like gravity has gotten stronger and they are just too heavy for me to move. For most of us, symptoms seem to cycle, so hopefully, yours will be on the upswing soon.

Nina

[Jersey Girl]

I was hospitalized twice 2 years ago a month apart, not coincidentally I realize now, right as my period started when no one had a clue what was wrong with me. I was also treated very rudely as well I think because of the doctors' frustration at not being able to diagnose me, so my condition was chalked up to being psychological. I saw in your post that you were taking premarin. The first time I was hospitalized I had just finished taking my second pill of Alesse, a combined estrogen-progesterone pill for perimenopausal women. The second time I had just finished a week of one of the naturally occuring progresterone pills. I truly believe that these medications made my symptoms SO much worse. I'm glad to hear that you're home now. I also didn't get much sympathy or interest from my autonomic specialist either when I finally was diagnosed with POTS--I don't think they have too much to offer that's effective and they seem more interested in those with PAF.

[geneva]

So glad you are home and with your family. I am sorry you had the "usual" treatment at the ER and hospital. I am curious if you are on new meds. I do not have NCS only POTS but when initially I was in the hospital, which is where I was diagnosed the 1st time, I was given a big dose of Florinef and a betablocker and sent home. I was so much WORSE leaving the hospital than when I went in and continued to go down hill. Months later at Mayo they said the worst of my dizziness was from way too much Florinef for me. I am not saying this is your case at all but just that sometimes these meds we are given can be a contributing factor. I hope that you will continue to make good progress at home. will continue to send positive thoughts your way!

[Deb]

Sue, so glad you're home. So much of what you wrote brought back memories of some of what I went through, too. I had something close to what you had, but I didn't have the seizures. I had trembling of different parts of my body, especially my eye lids. But it was the heaviness and the fuzziness and weakness that was so hard to deal with. That was when I was put on Florinef, but it took about a week to start to make a difference. I was considerably better, but it took a llllooonnnngggg time to recover from the effects of that bad spell. I was in the hospital for eleven days, and I was so weak when I left that I couldn't walk for more than about two minutes. I did get better and stronger, though, with each passing day. I hope that you will too.

Like Nina, I have periods of good days, and then a period of bad days. It seems so unfair when the bad days hit because I never seem to have any warning. It's just WHAM and I feel terrible. But they always go away, and then I have several really good days when I go to work and work in my gardens and almost forget that I have POTS.

I hope the increased meds help you, and that your good days will start right away. You've had enough bad ones!

[morgan617]

i swear to God they'll be carting my cold dead body the next time i go to an er. so sorry sue. hope you start feeling better very soon. it must be the time of year because i believe i am feeling about the worst i ever have. i have a rheumy appt tomorrow and cardio tuesday. big deal same old crap. oh sorry can't help you please pay on your way out. sorry but i get really grumpy before doctors appt. anyway, sue you take care of yourself, don't let the jerks get you down and feel better. morgan

[purplefocus]

Sue,

I am so glad you are home and feeling better. I am very thankful for people like you. We all learn from one another on here. No matter what we are going thru it seems like we can find someone else that has been thru it before and are on the upside and that gives us alot of encouragement. Happy Mothers Day to you and all and I bet that microphone is great.

Paige

[MomtoGiuliana]

Sue

Reading your description brings back memories for me too. It is miserable, humiliating and insulting what so many of us have gone through in the ER and hospitals. I am so sorry you had that experience. I hope the meds adjustment helps.

I am sending you the JHU material I promised today!!

You're in my thoughts!

Katherine

[migraine]

Oh man, I wish all of us could simply bypass the ER and get our specialist's butt on our scene as soon as possible. I'm sure if we were in a car accident, the ER could fix us right up...but there's no visible wounds for POTS!

I'd like to share a similar story and then leave you with one to make you laugh!....

When I was 13 (still undiagnosed) 3 doctors were determined to find out what caused sugar in my urine, headaches, and all my other goofy illnesses. They were sure I either had diabetis, hypoglycemia, or epilepsy. So I started out with a glucose tolerance test. I drank the yucky syrup and about an hour later had a grand mal seizure in the middle of the hosptial gift store. Very quickly I was rushed to have an EEG or an EKG - where they glue those things to your head. Anyway, those tests were all inconclusive and doctors were purplexed. I was unable to walk or eat for about a week and had the mother of all headaches.

When I was well enough, I was sent to another hospital for observation where they ran two other tests. I spent one day on all carbs and sugar with my blood drawn every hour (while laying down all day.) The next day I was on all protein and was allowed to walk around (because that should be healthy for me right?) Anyway, I ended up passing out on the protein day and messed up all of their theories. To this day I swear it was being hot and the smell of sauerkraut in the cafeteria that made me pass out.

I finally recovered from all of these stupid tests....and even to this day doctors don't have a clue what the heck was going on. After being diagnosed with POTS, I believe these were all symptoms and I was going through my worst POTS phase during adolecsence. So yes, I have been that bad and I did get better. I hope that is an optomistic affirmation for you, so hang in there. And now for the funny POTS/ER story...

I believe I had a similar (undiagnosed) attack in school. I think this was brought on by a heavy period (sorry guys.) I had very bad cramps, but also lots of POTs symptoms. I went to the school medical center where I passed out while I was checking in. They rushed me to a room where the doctor and nursing staff tried to convince me that I was probably pregnant and having a miscarriage. I kept insisting that I was not, but they didn't believe me.

Things got a little more frantic when the room was filled with 3 nurses and 2 doctors rushing around. Again insisting that they had to check me for pregnancy. Finally frustrated yet dying from ambarrassment I yelled, "I'm not pregnant - I'm a virgin!" Very slowly and quietly the room filtered out and the doctor gave me a wonderful pep talk on how wonderful and virtuous this was, and I was given some motrin and water and sent on my way.

It's all funny now, but it wasn't then and I sort of view this whole illness like one wacky M*A*S*H episode. Hope this brings a smile to your face and you know that we all feel for you. Get better soon.