kellieb

I'm not sure. I wont be able to see either one by the end of this month with no insurance. Im a single mother. about to lose my job. Dr Grubb states in one of his articles that salt should not be given. I do have an appointment with Dr Pierce on 3/24 i am going to keep that. i called the office today. told them what he said. They asked who im gonna continue treatment with. Them or the other. I cannot have both.

I should also probally note that he told me to go get salt tablets from the store. And eat as much salt as possible on my food. Aswell as all pots is the same wiether it be hyperadrenic or hypo. From my understanding with hyperadrenic your not supposed to have salt at all. Or even with the high bp. Salt is bad. Am i totally confused. Or what? one doctor saying yes i have it. Another saying no i dont. Should i trust the one who is supposed to know about the hyperadrenic kind? or the original Doctor who diagnosed me? My Gut tells me dont listen to him and continue to see Dr pierce.

Yes They had me on a Beta blocker. Which slows my HR down. If y0ou look at all my test results. My basline HR is diffrent each day! Even on the tilt. Right now at sitting postion. have been sitting since 10am got up once to potty. my BP is 145/103 HR is 90.But it verys. from hour to hour day to day. i took that around 45 minutes ago when my body started feeling shakey. Almost like a adreinline rush. I have every symptom of pots the normal diagnosis you get prior too. the normal complaints leading up from IBS to Sinus tachycardia. They took me off the Beta blocker a few weeks ago. When i went to my primary about the pots. She took me off the bisoprol 5mg and put me on Bystolic 10 MG i hada very bad reaction to that. Went into what felt like one of my episode but only 10 times worse. After that i was just on my Topomax 50 mg two times a day. Then on monday night they call in Venlafaxine 75mg and Labetalol 100 mg. i took them both with a large glass of milk at 6pm by 6:20 i was sweating nausious fast HB couldnt keep my head up. Felt weak. By 6:30 i was in the bathroom vomiting. I felt alot better after that.

All of these people seemed to be freaking out during my test. Like they wasnt expecting the end results. Freaking out. They had the card doctor down there within 2 minutes. That to me does not sound like o tolerated it well. I have had treadmill stress test. then a treadmill stress test with echocardigraphy when i failed the first one. i lasted 6 min 41 secs with the second and 5 mins 25 secs with the first. They had me on a B-blocker for my SVT for both of these test. I was instructed to take them. the first test was basline HR 108 resting bp 130/86 maximum HR 170 bpm maximum bp was 140/78 she recorded that after i already sat down. She couldnt get it when i started having a episode cause i she had to hurry and get me off the treadmill. Stress Interpretaion 1. Resting tracing indicates normal sinus rhytm. there are non-sprecific T-wave changes 2. the electrcarigram is negative for ischemia 3? Abnormal clinical response to treadmill stress. Dizzy and pale with excersise and had to immediately stop tradmill excercise. 4. blunted blood pressure response to excersize. 5. Minor arrhymias occured during stress or recovery. There are occasion stress-induced preamture ventricular contractions. Duration 5 min 25 secs. the second one where i had the echocardiography with it. baseline HR 87 bpm resting bp 120/92 maximum hr 175 BPM maximum BP 180/96 The highest was BP was recorded as soon as i layed back down on the table to finish the Echo. Stress Intpretation 1. REsting tracing the reatinging tracing indicates normal sinus rhythm. 2. The electrocardiogram is negative for ischemia. 3. Abnormal Clinical response to tradmill stress. The patient exhibited poor excersize tolerance. 4. Hypertensive blood pressure responce to excersise. 5. No signicant arrhythmias occured during stress or recovery. Stress Echo Interpretation REst Echo study: Normal left ventriclular systolic function without regional wall motion abnormalited at rest. Immediated Post-Excersize Echo study: Hyperdynamic left ventricular systolic function without stress induced ischemia.

No he is not i got back on april 13th. He said you have all the symptoms of it. even from 2006 when i got diagnosed with svt, and sinus tachycadia. i complained back then of feeling light headed like im going to pass out. Ofcourse noone ever took my bp during this. And when they did they would always getting it while im sitting so it would be usual. IT wasnt until i went to the ER on December 21,2010 that it was dicoverd my BP goes up as i stand. he perscribed support hose thigh high 30 mmhg and Inderal 20mg BID. Show me some wall excercise with crossin my legs and flexing them. He said even with pots he does not believe in medication. He likes to treat it without. I asked him what is wrong with me then. He said he is not sure. he needs time.

I totally agree. BJ the nurse who did this. Said you would have been out if we didnt lower the table. That is tolerating it well? lol Im SOOO confused. i have recored my HR at up to 150 BMP during one of my spells on my bp monitor. And aslow as 40. Even on some of my test results from the halter monitor the highest recorded was 150 pm the lowest was 40 BPM

On Monday 3/14/11 i got diagnosed with hyperadrenic pots by Dr pierce. I wrote the Dean of the medical school. Who got me into the head Card Doctor For Treatment. And also Research from the medical school. I gathered all my Medical records brought them to him this morning. He told me he is not as convinced that i have pots because of my tilt table results. With pots your HB is supposed to go up by 30bpm within 10 mins. Mine was 12. He also told me he doesnt know why im haveing the tremors/twitches. And i need to talk to my nuro doc about that. If i remember correctly this is one of the symptoms of pots? Im gonna post my Tilt results on this aswell. Any input would be gladley appreciated. Im so confused. Scared. dont know which way to go. Please let me know if im missing any info that might be useful from the tilt results. Patient placed in supine resting postion for 5 mins. baseline parameters were SINUS rhythm at an average rate of 72 bpm blood pressure was 140/94\ pulse 100% The table was tilted to a head up postion of 70 degrees at 13:28. The patient complained of changes in vision weak and room spinning at this time. A 12 lead ECG, blood pressure and pules oximetry readings were monitored thoughout the study. The patient experienced symptoms of "tingling Feet" all other symptoms Stable at 13:30 or 2 mins into the tilt. The ECG was Sinus rynthem at 76 bpm, BP was 159/129, pules oximerty was 100% the patient experienced symptoms of "head spinning" at 8 minutes into the tilt. The ECG was Sinus rhythm at 85 bpm, BP was 178/135, pulse oximetry was 100% The pertient experinced symptoms of VERY PALE,"PASSING OUT",slowed speech,Diaphoretic at 12 mintus into the tilt. The ECG was Sinus Rhythm at 84 BPM, BP was 191/139, pules oximetry was 99% The patient expeirneced symptoms of Tachycardia with return of normal mentation at 13 minutes into the tilt. The ECG was SINUS TACGYCARDIA at 105 bpm, BP was 181/130 pulse oximetry was 99% The Table was returned to a suprine postion at 12 minutes into the tilt. The patient did not lose consciousness during the study but reproduced symptoms,near syncope. The lowest heart rate was 72 bpm during sinus rhythm. The lowest blood pressure was 140/94 pre-test, 159/128. Impression: Abnormal Tilt study with presyncope In the absence of a significant fall in pressure or heart rate suggestive of either cerebral syncope or psychogenic syncope. The patient tolerated the procedure well. Limits of study outlined to patient.

Tonya, I in noway did i see inappropiateness. It's a very scary thing. For both the patient and the caregiver. I wish you luck. And send many hugs for those stressful times. I am newly diagnosed. So just learning about it for me was a very scary thing. I wish you and your child all the luck. I know this sounds silly. But when my heart atarts racing quickly like that. If there are icecubes around i put them on my wrist. If i dont have ice i use cold water. IT slows it way down. Wish you luck. Kellie

Last night Dr Pierc's nurse call me. They called in Labetole 100MG twice a day and venlafaxine 75mg twice a day. I took both of them with a large glass of milk at 6pm. By 6:20 i was sweating. Very nautious. heart beating hard. Couldnt keep my eyes open. My body felt very weak and was shaking. By 6:30 i was hugging the porcilan God. After everything came up. I felt somewhat better. I stoped sweating wasnt spinning anymore. Was still shaking. As i am this morning. Not as bad now. But even my bottom lip was shaking. my bottom number my bp when i woke was 135/110 HB was 90 i just took it a bit ago. it 130/102 hb 94. I put a call in waiting for a responce. Has anyone else had this kinda reaction?

Yes is very exciting yet nervous. I also did research for the peusdotumor. Which is also kinda rare. The Administrator already sent me a email this morning wanting all my contact info. Things seem to be moving pretty quickly. Anything new i find out etc i will be glad to post as it comes in. I know it sounds weird. But i think we learn more and more from eachother each day. IT comes with so many things. I'f doctors were to look at this forum i think they would learn alot. Just from actually listening to the patients. I guess i should be thankful that im a very stubborn women. I will not take not for a answer. Even if they find out just one new thing from me. It would all be worth it.

This is the Dean of Students here at the medical school. He called me tonight Said he will get me into the head card doctor. I told him i tried i couldnt get in in time. He said you dont worry about that i will get you right in. Then he said there is another Doctor who is doing research on this. he has 4 grants!!! I did delete my personal info. so it may look a bit funny --- On Tue, 3/15/11, kellieb > wrote: From: kellieb_Subject: Re: Research To: "Churchill, Robert" <ChurchillR@health.missouri.edu> Date: Tuesday, March 15, 2011, 5:27 PM Yes Sir i would like that very much. Please let me know how to go about it. My phone number is i deleted this part. or if you would prefer to go thru email that is fine aswell. Sent from my HTC smartphone on the Now Network from Sprint! ----- Reply message ----- From: "Churchill, Robert" Date: Tue, Mar 15, 2011 6:44 pm Subject: Research To: "Kellie B" Yes to both questions. We do research in this and we have a cardiologist who knows about and treats this condition. I can facilitate you being seen here if you like. Sent from my iPhone On Mar 15, 2011, at 2:54 PM, "Kellie B" > wrote: Dr Churchill, I was recently diagnosed with Hyperadrenic Postural Orthostatic Tachycardia Syndrome. I'm a 32 year old single mother of one 6 year old. With a past history of Pseudotumor cerebri. This all started with the pregnancy. I have 2 reasons for emailing. The main reason is research. Not many doctors know about this disease. Or what all it consist of. Its very complicated. especially the Hyperadrenic Version. Do you by chance have a research program related to anything about this? If so i would LOVE to be involved. In one way or another. My Second reason for emailing is actual treatment. I recently started seeing Dr Pierce from Missouri Heart Group. He specializes in POTS But not the hyperdrenic version. Do you know of any Dr's close to columbia? Time is critical for me. As i will lose my insurance within the next few weeks. My FMLA is about out. Thank you for your time. Kellie Beran

my primary did actually. we tried the 24 hour urine. wasnt picking it up as much as the 2 hour after a episode. honestly i have been flushing for 3 or so years. i thought i was going thru the change of life in my early thirtys. Yes my blonde comes out. i thought they was hot flashes.. lol

I guess something came back high in my urine a couple times. really bad face flushing. HE talked about it. but i had a bad episode about a hour before my appointment having some bad brain fog. If i would have thought about it. i would have brought something to record him. He said he personally will be calling me within a few days. I will ask him then. If i knew what i was looking for i have my medical records right here.. lol

Today i went to see Dr Pierce who specializes in pots. "Unfortanatly not hyperadrenic form" He diagnosed me with Hyperadrenic pots with MCA. HE is not as familar with this type. So before we start any kinda of treatment he is gonna call around. I think this kinda scares me. But atleast i know im not crazy! He told me he was very impressed with my research skills. i told him i get fired on the 23rd. lose my insurance and everything. He seemed pretty hopeful we might get me back to work. *Cross my fingers* It is in hot kitchens. So im not so sure. But i have faith! Also got a copy of my medical records from my primary. It really comes to light its all there. you just gotta know what your looking for. It amazes me that more doctors do not know about this. If i didnt find this by doing research. i think i still would have been twiddleing my thumbs. I feel for all of you who went years and years without knowing. I look forward to talking with you all more. You gave been great. Kellie

I know this sounds stupid. But where does the migrane start with pots? i have been having migranes for years from the "fake tumor" in my brain. mine starts above the eye then moves to the top right side of my head. They have me on topomax for pressure and migranes. but it really hasnt helped me this time. or the first time i used it. mine use to get so bad i would dunk my head in bucket of ice water. attempting to numb it. LEt me knock on wood. i havnt had them that bad in a few years though.

I've had this for the last few years it happens to me when I move my neck or arms sometimes, I don't get a stadium sound, just the hearing fades to about 20 percent. Im so glad that someone else has something like this. I don't know what dimming vision is but for the last couple of years when looking through one eye at a time, one is a lot more vibrant then the other. The bright thing has just come to me recently. probally the Last couple months. But mine is white. anything with the color white overwelmes me for a second. ITs kinda weird. Im not sure if its related to the peusdotumor or the pots. That will be one of the first things i ask the specialist on monday. Also When im watching TV and the camera spins. i get dizzy. Or they start moving it fast in a circle. Very weird feeling. Anyone else get that?

i often hear my heartbeat. also whooshing. Usually i can count my pules just my putting my hands over my ears. I also somewhat lose hearing. Just for a few seconds like the vision. Everything almost sounds like your in a stadium. Then this high pitched noise. Then things go back to normal. Besides the whooshing. I mainly get that when i am laying down. HAve your doctor check your eyes. They will notice optical never swelling. Mine was brought on by pregnancy. Just like everything else has been. I have never been diagnosed with mono. Although i do think i had it as a teen. I went around 6 months of sleeping. Ofcourse they chalk it up to "she is depressed" but i wasnt! i just literally had no energy. i couldnt even stay awake thru class.

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.

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?

Does anyone else have this? Is this brought on with Pots? http://www.bing.com/health/article/mayo-126527/Pseudotumor-cerebri?q=pseudotumor+cerebri&qpvt=pseudotumor+cerebri here is a artical of what it is. I have read so much in the past few days about pots. I remember seeing something about hypertension in your brain. but i dont recall what it is. I will be going tot he dr on Friday. I want to have all the info on hand. I forgot stuff alot. This is the only way i can actually remember.

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.

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