Hello.. Is This It? Am I Not Really Crazy?

[kellieb]

First off i want to say hi to everyone Im new to all this and my spelling is horrible. So bare with me. Inbetween hand and feet warmings i will

be telling you a bit about me and let you decide. I have not been diagnosed with pots. YET!

About me:

It all started 7 years ago when i was pregnant with my first and only child. Almost immeddiatly i started having complications. I get to around 3 months. I start completely

loosing my vision out of nowhere. I would almost zone out in a way. Then it would come back and i would be fine. " me being the natural blonde i am casual mention to the OB How

come noone every told me about the it goes totally black over my eyes pregnancy symtom?" After a are you serious look i was then wheeled down to ER got a MRI everything came up normal.

Got refered to a nuro Doc. Who diagnosed me with Peusdotumor ceribri. " Btw is intercranial hypertension part of pots? IT began from there. I went for my first spinal tap. i did what they

call "topped out" the spinal pressure was so high it didnt even regesture. Well obviously since was pregnant i couldnt be on the meds to lower my pressure very long. "they did nothing anyways"

Before this i never had a migrane in my life. But after they tapped me that first time. i would constantly have migranes! They wouldnt do more spinal taps because i was pregnant. So i was closely monitored.

I was on bedrest for around 6 months. Not because of the peusdo tumor. But because of placenta privia and preterm labor. I seen a specialist every week got a stress test and sonagram weekly. Along wiht my reg ob

We got her here safely believe it or not i went to 38 weeks! After i had her things were good. For around a month. From there the pressure would get so high in my head i would be in constant pain.

Almost begging for spinal taps for that temoprary relief. I truely felt like my head was going to explode.After around 45 spinal taps. Finally i got a shunt placed in my brain in dec of 04. I got home thought i could finally again enjoy

being a mom. That lasted a couple weeks. To make a long story short. i got meningitas twice. It was thru the tubes of the shunt. so i had to get it removed.

i lost quit a bit of weight. This Sent the peusdotumor into remission. in the next 6 years i slowly started having things happen to me. First it was my stomach.

I would almost double over in pain. Always had constipation. go 5 or 6 days without going. i was diagnosed with irriteable bowl sydrome and diverticuloses.

also Started getting pains in my abdemon. Slowly this " lump" has come up. i have showed it to 4 diffrent doctors. none of them seemed concerned. But for some reason

i would always get pain in that same spot. So i get the "im crazy there is nothing wrong with me" i actually try to convince myself the pain is all in my head!

Couple years go by and i cope with the pain. around a year later i started having pain in my kidney area. i went for test after test. they would show blood in my urine.

But nothing would ever show. i had a ultra sound. nothing came up. At this point i lost my insurance. quit my job. And once again just let things go. Meanwhile

i started missing periods. Losing my hair. Getting facial hair. etc. Hormone test come back fine. They said something was a bit high. But not high enough to do anything about.

I just am supposed to feel this way right? around 3 years ago diffrent things started happening on top of everything else. my face would get really hot. i would feel weird.

I would get my bp taken it would be just fine. Around this time i started getting palpatations all the time. I was sent to the cardioligist. After a 24 hour halter monitor.

I was diagnosed with SVT. well around 6 months ago. i would be walking around. and all the sudden feel light headed. at first it wasnt to bad. I worked for the schools

i would go down to the nurse get my bp checked it would be my usual 130/80 or lower. By then i would feel ok again after sitting down for a second. Thinking ok

its one of those things im supposed to feel i just went with it. Then it happend. They started getting worse. coming more frequently Lasting longer and making me feel even worse.

I Started having to prop myself up to keep from slumping over. Then it happend. One Day i was home alone. Got up from the recliner walking into the kitchen. I had that feeling.

Then woke up on the floor. At this point im like OK something is not right! I went to urgent care. I get there they give me a look. And say Let me get this straight. You have been feeling like this for a month

it Just is getting worse. you Actually pass out and you come to Urgent Care? "ok so not one of my brightest moves. But the word urgent was in the name. figured it was all good."

Ofcourse they immediately call the ER and have me transported over there. The ER discovers my BP shoots up when i stand. lieing was 125/78 HR 80 when i stood it went to

165/35. Sent me home told me they called there cardio doctor got an appointment set up for monday for me.

Monday i go in. Tell them what has been happening to me lately as im walking around. I tell them the ER told my my blood pressure rises when i stand. he then argued with me took my bp "sitting" it

was just fine. Told me OK come back in a month. At that point i was already upset cause he called me a liar. Told him wait a minute. So let me get this straight. Im passing out

while walking around. And your ok with this? Letting me go a month? He could see i was plainly not happy. They called upstairs and could get a tilt table right then.

I go up there. Tell the nurse doing it what the ER doc said. he gets me all prepped. the other 2 Come in and begin the procedure. lieing down thing was great. again 130/80 HR 80

they take me to 60 degrees. my BP immediatly goes up 160/99 HR 110 She said to him. do you beleive these numbers? HE said the ER told her her BP rises when she stands.

She immediatly calls the Doctor he says do the test but dont let her get above 170. She no sooner then hangs up the phone

I get that feeling. I Dont remember things after that. Until they lowerd me down. They said my BP went to 210/110 HR was oddly 120. Immediatly after dropping the bed. it was

150/95 2 mins later back to normal. They Immediatly called down the Nuro students on call. HE wanted them to check me out given my past with peusdotumor. The heart doctor came in and talked to him.

Said i have never seen anything like this. this girl needs to be admited for testing. This is nuro. told them what happend my symtoms of passing out. And left.

They did there thing. Called up to the person they report to. told them everything. Came back 2 mins later saying We see your obticical nerve is swollen again from your peusdo tumor.

But this isnt your brain. this is your heart. And left. I then went back down to the Dr's office. Cause everyone just left me. everyone went home!

At this point i was not happy with this heart doctor at all! he didnt listen to his patients. And he left without seeing atleast what they have to say after telling

them this is not right she needs to be admited something is seriously wrong.

I then made an appointment with my Doctor. It was the following tuesday. During this time things got worse. i always felt weak like i have the flu. my body starts almost shaking inside.

I was at work. " i work in the kitchens for the schools" Had a big pan of hot sauce. i had to throw it acrossed the counter so it wouldnt land on me, knowing i was going down.

During this whole time people would comment asking me whats going on with me. " i use to be this happy chipper person. always had a smile on my face. Always had lots of energy

and worked my Butt off." i was a traveling manager i go from kitchen to kitchen. Usually this episodes with go away with me sitting down for a min. i would be ok enough to get up and work.

But this last time was diffrent. i couldnt get up. Everything was spinning. my face was very flush. They was going to call a ambulance. I told them no. Called my daughters father. HE knows all

my past medical. Current etc. I get there once again my bp is high 210/110. they get me back to the room and on the bed. its back to normal. i actually had an appointment with my primary that day.

She got me into the my old cardiologist. I tell him what has happend the results from the tilt. etc. He does the work up. i dont know the names of all of the test. but EKC the sonagram. The stress test.

Then the sonagram with the stress test. I got into a arguement with the nurse. i can be stubborn when i think im right. When i was lieing down my BP was normal when i stood up he took it again it was 150/90

then i got on the treadmill that it went up to 174/114 HR 150. I couldnt take it. I had to jump down. i felt like my chest was caving in i was spinning like no other.

and felt like my heart was jumping out of my chest. he then took my BP again it was 140/96 they did the sonagram. i was geting up. I said did you see what happens? with my bp? he said yes its supposed to go up when you excercise.

I said yes i understand that. but that middle one you got was just me standing up not doing anything. He looked at my in my face and said look. your heart rate and BP was fine;

All i see is someone who is not use to excersise! I tell my doctor. She told me dont listen to him. he has no clue at this point im already taken out of work. even more things are happening. my body cant take cold at all. My fingers and feet

are constantly cold. Most of the time my head is spinnng. Even while sitting now. The only Doctor actually believeing me was my primary. She has run 24 urines i have had catscans blood tests.

another catscan with contrast. tons of blood work. And lots of other test. everything is coming back fine! the only test. that i failed was the tilt table. i was still on the same meds for the SVT. And she had no clue what was

going on. its been around 4 months. of not knowing. sinking into a depression.My body is weak. it I keep getting all these new feelings. inside of me. Im 32 i coudlnt possible be having all these health problems. everyone is either clueless. Or telling me nothing is wrong.

I was talking to a friend of mine about EVERYTHING. So we both started looking stuff up. couldnt really find much. Until i typed in failed tilt table test. I open up this webpage telling me about

Postural orthostatic tachycardia syndrome. I look at the symptoms. Halfway down i am saying to myself i have that to ALmost every one of them. ok im almost to the end. i have all but 5.

But it talks about hypotension not hypertension. Then i start reading further.. Shaking almost crying as i read it. ITs me. thats me these people are talking about!

I send him the link. He is like weird. i was just reading about the same thing! i figured since it was late at night i wouldnt call and wake my doctor up. So i called that morning. Telling them how my BP is doign weird things again.

Im Running lower then normal. Alot more then usuall and i have been feeling even worse. I also told them about POTS. She had me come in. They took my BP immmdeiately cause i was flushed. it was 174/115 We talked about

the wackyness of it for a min. Then started talking about pots. She said she had only had seen one other patient with Pots. We then brang up the website. Watched videos. crying hugging eachother.

We are both pretty confident this is it. She put me on Bystolic on Friday. 3/4 my body did not tolerate it well.Felt very sick to my stomach. I layed down o nthe couch for like 3 mins cloeing my eyes cause i was spinning. My daughter asks me why

my eyes are bright red. i go look there blood shot. i sit i nthe recliner for a min.Call the oncall asking them about the meds. he told me to hold off taking them my BP went down to 90/60 and its just allergys with my eyes!

i say ok. i go look there white again. So i go lay back down. Same thing happens. My eyes are bloodshot red.

I didnt take the Bystolic again. waiting until i see her on friday. She admits she knows nothing about it.Not many doctors do. Im Confident she will atleast get me diagnosed. Took my 2 inch thick file home along with a big fat stack of info about pots. I go see her on friday.

Thanks For reading my story. All of yours touched me deeply.. I look forward to hearing from you guys. Im sure i left lots and lots out. i have alot of "brain farts"

Kellie

[lieze]

((((kellie))))

I am so sorry!

I feel like you are way sicker than I am but I do know how it feels to be sick and scared and have this freaky scary stuff happening to you and to go for help and be told confusing things.

Hang in there-you are tough.

I think some of the people here maybe able to suggest some contacts for you where you might find a doctor who understands.

We can hope any way.

[Sarah4444]

Kellie-

So glad you found us. It sure sounds to me like you have POTS. Since you are also having all the flushing and high blood pressure, you may have hyperadrenergic POTS. There is an article you should read and give your doctor called "Hyperadrenergic POTS in Mast Cell Activation Disorder". Try googling it, and if you can't find it let me know and I can try to send it to you (for some reason links don't always work when I post them here).

This is what I have, but I don't have the high blood pressure, mine tends to be too low most of the time. Be prepared though, for the fact that many doctors don't know much about POTS (which you already found out, it seems). Try not to get too frustrated but keep pressing for help.

I hope that your current doctors look after you well, and that you start to feel better soon-

Sarah

[kellieb]

Sarah thanks so much for the help. I read that artical a couple days ago. I suspected this is the form i had. IT scares the %&$* out of me. my Doctor put me on beta blockers on friday. my body had a major "episode" both friday and Sat. What im confused about is. Can you BP lower aswell?

My BP has been really low all week. Even before the b blockers. IT is weird. one time i will get my normal reading. Then a couple hours from then i will be hypotensive.

[Noreen]

Hi and welcome-

I am glad you found this wonderful community. You should check out the main webpage - in the left hand column is a link to things that help. Generally increasing water and fluid consumption is a good idea. Now that you know the 'weird' feeling happens just before you pass out, you can learn some tricks to try and abort a full blown episode. Here is a link to an old newsletter with a great page on Syncope counter maneuvers, aka things to do to not pass out - http://www.dinet.org...ws-Summer09.pdf

.

On the home page is a link to doctors familiar with our problems. Check it out and maybe you'll be lucky enough to find one near you.

It is great that you have a good primary doc willing to listen to you and learn.

Take care,

noreen

[RockiesGirl]

YOU, unfortunately are going through what so many of us have gone through with the medical profession. I am truely Sorry, but at least you have found us ;o) I am on Bystolic with a few side effects but there are many other drugs out there that are successful with our symptoms as well. I was just finally diagnosed in Jan. but like you, it took moving mountains and ending up in the hospital for a week.

Where are you from?? I found a great cardiologist and have an appt. with a Neurologist who specializes in POTS. I recvd. these Physician names from people on this site and Facebook. Hopefully, I pray, you can at least start getting the help you need. Keep us posted and Good Luck!!!

[kellieb]

Hi rockiesgirl I am from Missouri. Was born and raised in Ohio. All of my family is still there. There are no specialist that i have found around here. However there is the "top specialist as you guys have said" about 3 hours form my home town. Im actually thinking about taking the trip. unforenatly after the 23rd of this month i will be fired from my job. Lose insruance and all. As far as the meds. IT talks about it in the Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders part about not given the B blockers. perhaps this is why my body had the reaction it did?

[RockiesGirl]

Well obviously I have to read up again on how to reply So Sorry to everyone!!! But have you signed up to meet the members on DINET yet? Maybe you can find some help this way and hopefully you can get 1 month of Cobra (Insurance) or something so that you can get on some Meds that will help you!! Best of Luck!!

[Sarah4444]

They do not recommend beta blockers if you have mast cell activation, as apparently they can make things worse. That may be what is happening with you. I took metoprolol briefly (just a tiny dose) and didn't feel much better or worse. From what I can gather, blood pressure can be all over the place with this version of POTS. I am doing better now that I take MCAD meds, but am still frustrated by my level of disability. I have gone from being bedridden, only being able to huddle to the bathroom and back, to being able to drive short distances, walk around the house and do short activities. But I still can't stand long enough to cook an elaborate meal, tidy my house up, that kind of thing. I may just have to accept this, but would love more improvement of course.

If you follow these threads you'll see how others are doing - at this point it seems like we are trying to learn together and get healthier and more functional.

[pat57]

Does your primary Dr. know your about to lose your Ins?

Ask her to put you in ambulatory inpatient and get as much testing

as you can.

Also did you get a report from that TTT?

good luck

[kellieb]

Hi Pat i did not. Although im sure i can! I will call tommrow. and post results. i want to know myself. All i know is i failed it very quickly

As far as insurance yes she does. Thats why on friday i am bringing in what i have gatherd. From testing to what i think it may be.