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LindaJoy
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Hi, everyone.

My name is LindaJoy. I've been reading your messages for most of the day and am so happy to know that I'm not alone. Ten years ago, my endocrinologist at the Cleveland Clinic said that I have POTS--he manually checked my blood pressure and pulse as I layed down then stood up. But, he never said anything, then, about it, such as what symptoms I should expect or what POTS even was.

Since that time, I've been diagnosed with fibromyalgia, irritable bowel syndrome, an active pituitary gland tumor, reactive hypoglycemia, raynaud's syndrome, gastritis / acid reflux, tachycardia, anxiety disorder, mitral valve prolapse, Wolff-Parkinson's syndrome, severe food allergies and medicine intolerances, eye strain (pain, too, so got glasses) and low blood pressure (drops at night). I also have severe night sweats, chronic fatigue, a buzzy feeling all the time (like adrenaline rushes), buzzing in my ears, breathing problems (like I have to think about getting a deep breath), tremors, dizziness, fuzzy vision, confusion, tingling especially in my calves and calve pain, irregular periods, a hot face but no fever, frequent urination, headaches, neck pain, weird body temperature fluctuations, cold hands and feet yet they sweat too, difficulty swallowing at times, itchiness especially in the cold or after a hot bath or exercise.

I feel like I'm falling apart. I see Dr. Fouad at the Cleveland Clinic the first week of April for a tilt table test and diagnosis.

Does it sound like POTS is to blame for all of my symptoms and syndromes to all of you, or does it sound like I have other things going on? I'm scared to death that I have Shy-Drager Syndrome or MS or Parkinson's. What do you all think?

Hope to hear from you all soon.

:P

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Guest Mary from OH

Welcome! And Bless your heart!! It sounds like you've been through the wringer!!

Dr. Foaud will be able to determine what is going on in your body!! They have a wonderful set up at Cleveland Clinic. You will find out much info at that appt and an answer to your question. I would be surprised if you do not have an autonomic nervous system disorder.

Best of luck to you in getting answers to your medical problems. Continue to ask questions once you find out more. You sound like you are already well on your way!! Don't worry too much about the "unknown" and "more serious" medical conditions. Take one step at a time and you will get your answers and God willing, a good treatment plan!!

Let us know how your appt goes at Cleveland Clinic!!

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Welcome LindaJoy,

Sounds like you have alot going on. Alot of your symptoms could be from the mitral valve prolapse or the WPW I would think. Have you wore a holter monitor? Maybe alot the symptoms are when you have a fast heart rythm(WPW). Alot of people get diagnosed with anxiety disorder and it's really due to their mitral valve prolapse.

Hang in there. Try not to think of what it could be. I know it is hard, but fear and worry won't change anything it will just suck up all your energy. Think good thoughts and best of luck at your appointment.

Dawn :P

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Hi LindaJoy

Welcome. You'll find that sorting out what's POTS-related and not POTS-related is a problem common for many of us here. I share many of your symptoms -- including the odd ones like itching when you're out in the cold and after a shower, the wacky body temp, hot feeling though no fever, breathing difficulties, etc. I have only been diagnosed with POTS but have some other symptoms like massive weight loss and muscle wasting, that no doc can figure out. So I likely have something else going on, too, that's not a common disease.

Is your pituitary tumor possibly the cause? If you go the page on this web site that tells about causes of POTS, you will find some info on that. It is a treatable thing, I believe, with surgery. For most of us, we don't know how/why we ended up with this condition. I developed POTS following giving birth to my daughter 15 months ago.

Cleveland Clinic is a good place to be. Good luck in your treatment and keep us posted.

Amy

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Thank you, Mary, Amy and Dawn for your support and encouragement. Right now, since I've yet to be diagnosed, my mind is leaping to all sorts of negative conclusions, which is very easy to do when my heart takes off or I have pain in different places all of the time. But, thanks. I'll try to stay calm. My endocrinologist seems to think that my tumor does have something to do with this, or at least he did years ago, but now he says he thinks I do need to see Dr. Fouad and see what's going on, so I'm not sure he blames the tumor anymore, especially since it seems to be in remission and has been for some time.

I have learned a lot from all of you. I feel so badly that so many people seem to be suffering with some sort of dysautonomia. I've been through so many doctors over the past ten years, most of whom told me that I was suffering with simple anxiety, or that I needed to go to church more (honest, one of my area's supposedly top heart doctors said I needed to go to church more and I'd get better, which I know God can heal, but I really don't think that's what he meant,), or that I was nuts--I was sent to a psychiatrist more than once for all of my "stress." Anyway, I will keep you all posted. I go for a tilt test on April 6th. I'm very nervous about it, for one, I don't know what to expect and two, I'll know more of what's going on, and maybe I'd be better off not knowing. There I go again. Anyway, thank you for being here. I'm sorry that you are, for you and what you're going through, but thanks. :P

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Guest tearose

Hi there Lindajoy! Welcome!

You are going between being happy that you have this workup in April and the fear of hearing bad news...we all do this, you sound like a normal one of us! :o

Please trust that "knowing" what you are dealing with will better help you live a quality life!

I too am glad you are going to get some answers finally and you only have a few more weeks. I suggest you read a lot so you know what questions to ask! This is VERY IMPORTANT! You will have the chance to sit and review the tests with the doctor...take advantage of this time. Try to get three things from him before you leave...1) a diagnosis and 2) a treatment plan and 3) copies of your records.

You have travelled a long way to this point, hang in there, you are very close to good answers now.

best regards, tearose

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Guest Mary from OH

Linda-

Although I am very much a believer and a "regular church goer" (when my daughter and I aren't sick), I CAN"T BELIEVE A DR TOLD YOU YOU"D GET BETTER IF YOU WENT TO CHURCH MORE!!!@!!!!!!

I think I would have asked him if he remembered to send in his box tops to the cereal companies to renew his medical license!!! LOL!! What a joke!! God does work in mysterious and miraculous ways!! But, going or not going to church does not predicate you to getting better! What a quack!!

Glad you're off to the Clinic soon!!

Take care!! And stay away from that Cardiologist! (IMO!)

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Thank you, everyone, again, for your support and encouragement. I have read a great deal about POTS, Dysautonomia and other autonomic disorders. I didn't realize there were so many. I typed out all of my symptoms and diagnosis for my Cleveland Clinic doctor so I'd be sure not to forget anything while there.

I wondered if anyone else has a fear of leaving your house because of your health condition? I haven't been out of the house for a week, and that's just fine with me. The last time my mom took me to the store, I came home and slept for two hours. I was exhausted. I had a very hard time in the store, even though I held onto a cart the entire time and Mom cleared bottom shelves off so I could sit and rest periodically. Now, my husband wants me to go to the grocery with him, and I'm terrified that I'll collapse in the store or come home feeling absolutely awful. Does anyone else worry to the point of never really going anywhere? I know this sounds like I'm developing an irrational phobia, but I don't think so. I think I'm very rational in my fear, but I don't know what to do to overcome it. I just don't feel strong enough yet to venture out, but I don't think my husband gets it. Thanks for listening. Linda

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Welcome LlindaJoy,

I suggest looking thru the older posts on search mode and I think you will find some discussions on Tilt Table Testing(TTT), what may or may not be done, proper procedures, side effects and what they may use to to induce symptoms.

On the home page, you will find listings of what helps, testing, doctors, etc.

As to being in the house and afraid to go out, yes your scared, tired, in pain and just plain old confused with what your body is throwing at you. Been there done that, sometimes still doing it. Mostly just when I'm too whipped to handle things or sick. There are also days when I say "I have to do this, no matter what." and somehow I do. I'm a fainter by the way ( I have scared many a people by just fainting dead away while out and about, gotten sprains, strains, bruised and broke ribs too) and I still go out, I guess I'm just stubborn. I also have bradycardia(to slow) and tachycardia too, nausea, bladder and bowel trouble, sleep trouble (can't sleep or too much sleep), orthostatic intolerance, exercise intolerance, vision disturbances, blah, blah, blah...

I hear some really good things about the docs at the Cleveland Clinic and I hope you get the answers you need and deserve. :o

Blackwolf

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You know, Black Wolf, my body does a lot of weird things, but fainting isn't one of them. I'm so thankful for that. I'm sorry for you! :o

Take care of yourself! I understand about being stubborn. When this bout began about a month ago, I determined to find out what was wrong with me and learn all I can about it, thinking then that I could control it. Ha! I guess with this stuff, the closest you get to control is just becoming at peace that this is the way you're going to be and learning how to deal with all of the weird turns your body takes. Thanks, ya'll. Linda ;)

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Hi Linda;

WOW, you sound like me. And I am sure you sound like alot of other people with dysautonomia. I am in Ohio also. I had my tilt table test done in Toledo. There is nothing to be worried about. You simply lie on the table with a foot rest, that you will stand up-right on. You will be secured and there will be a few people there with you. And believe me, they know exactly what they are doing and they have seen everything that could possibly happen. It is not painful at all. When I had my tilt table test I stood in the upright position for 20 minutes without moving a muscle. Then the cardiologist gave me nitroglycerin (a very small dose) to speed up my heart rate, then monitored me another 20 minutes. The doctor took my BP and pulse every minute. I was also hooked up to monitors. So they knew everything that was happening to me.

I was very nervous before I had the tilt table done. But I would have no problem doing it again because it gave me an answer I was looking for for many years.

My father has neurocardiogenic syncope (he faints) and has a tilt table test every year. It is nothing for him.

My cardiologist also told me that I was born with this syndrome. It gets worse with stress, infections, and trauma. He also told me that it won't kill me (it just feels like it will), but I really do have to take care of myself. I have vasovagal depressor syndrome, MVP syndrome and POTS.

As for you wanting to stay home, sounds like you are agoraphobic. I am that way too. I just recently became that way in the last 4 months. It feels better for me to stay home then go through all of the anxiety and discomfort of going anywhere. The only way that I can explain it is that I don't think I am scared to go out. I get so much stimuli with driving, shopping or just visiting that I feel like my nerves are on overload and it whipes me out.

I recently quit the best job I ever had. I worked at a greenhouse. I loved planting for spring. Three weeks ago I tried to go to work. When I work there I get alot of exercise and am very busy. I only worked 2 hours, couldn't take anymore, went home and slept for 4 hours. I called my wonderful boss and told her that I couldn't work anymore. I cried for 2 days.

Sorry, I am rambling on and on. I hope this isn't too long for you! Hang in there!! You will feel better getting that test done because then you can start treating you symptoms.

KathyP

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Hey,

I think the thing you have to straighten out in your mind is do you not want to go out because you feel so awful when you do or are you really scared of going out of your house. I have had this for almost 10 years now. I cannot go out on my own, when I do it takes me days to recover. I have been mostly homebound and virtually bedbound since 1995 with this. There are days when I just tell my husband get me out of here because I can't stand these four walls anymore but usually I pay if I don't do that when I am having a good day for me. I go to doctors appointments and like I said for rides and sometimes dates. I have not been shopping in 10 years, though sometimes I will go to a store when I think I can get Jim to buy me something :) on our dates. Most of the time I don't feel like going and sometimes I can't but it is not fear of the outside world it is fear of how I will feel when it is done. I am still recovering and can barely do anything after a dentist appointment last thursday. You just need to figure out if it is because you feel so awful when you do go out and you have to recover for days physically then I don't think it is fear of outside , maybe your illness and the results of how it makes you feel. The tilt table will tell you a lot of things. It is a harmless test though you may need a few days to recover from that too! :)

We all learn how to deal with this on our best and bad days. You will learn too. Read as much as you can, these posts are an invaluable learning tool.

Keep reading and asking questions we all know a lot about this stuff unfortunately.

Stacey :-)

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Thanks, Everyone. Stacey, you asked a good question. I'm not afraid of the world at all. I used to love to go places, before this hit me. Now, when I go out, I come home and feel lousy for the next few days, so I don't want to go. Plus, I am afraid of having an attack in public and everyone staring--"You don't look sick." I get that a lot.

Thanks for the words of assurance about the tilt table. I'm always afraid of things that affect my heart.

I have been reading all I can about dysautonomia. I'm so glad for this forum and for all of you who are willing to share. For the first time in years, since I began having symptoms over ten years ago, I feel like I'm not crazy--I hope that doesn't offend anyone. The weird symptoms I have and report to my doctor to the response of, "It's stress, anxiety, there's nothing wrong with you, how's your marriage?" I now know are a part of this. That makes me feel better. But, I will feel a lot better (I hope) once my official diagnosis comes through in April.

Does anyone know, how soon after my tilt table test will my doctor have my results and tell them to me? I know everyone's different, but I'm seeing Dr. Fouad in Cleveland, so anyone who has had her, did she tell you right away? I want to know as soon as possible. I think the stress of not knowing is really getting to me right now.

Linda

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Guest Mary from OH

You will know the results of your TTT immediately. After the procedure is finished, the dr will come in and talk to you. Don't be surprised that the dr is NOT there for the procedure. They will look at the computer printout of what happened during the test and talk with you about it. You will feel like crap for a few days. I will be kind and warn you about this. I felt like I ran a marathon!! (Basically, I did!!) But, the dr will be able to help treat you after this test, so it's worth it!!

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Hi Linda;

Mary from OH is right, you will be exhausted afterwards. But, you feel that way no matter what you do anyway. I can't speak for anyone else's TTT. Yes, I was exhausted for a couple of days afterwards, but finding out what was wrong with me was worth it. That's the most important step, understand what you have and then begin the right treatment.

During my TTT the doctor was there the entire time, along with 2 nurses. They talked to me in a calming manner when they noticed changes in my readings. I didn't even have to say a word. It was like they were telling me what I was feeling. It was nice to have this because it was the first time that people could actually see what was happening to me. And when they were finished the doctor called my husband in and talked to both of us about everything he found. He then gave us treatment options.

I also know that I am not crazy, neither is anyone else with this condition. The general public doesn't realize that this is a syndrome that we suffer from on the inside because there are no outside visual signs. Panic attacks are certainly a private **** that many people have a very hard time understanding.

Look forward to your test with happy excitement instead of fearful anxiety. THINK POSITIVE!!!! You will be fine!

KathyP

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Welcome Linda!

I've had two TTT done in the last 5 years by two specialists and on both occassions I talked with them about the injection that they give to make you "symptomatic". I said listen ... I'll by symptomatic when you stand me up there for 20 minutes NO PROBLEM. And each time I agreed to let them put in the tap for the drugs but in both cases they NEVER needed to inject them. If you are concerned about any part of the test -- speak up and talk with the doctor. If you are concerned about any of the meds they suggest, speak your mind and establish a partnership with the specialist right off the bat.

As for outings ... I also still avoid many places, but I am getting better on my less POTSY days. For me I always have a "back-up" or rather "back-out" plan. First I don't do big grocery store trips -- I can't handle the walking in those mega-arts. Even those electric carts make my symptoms jumpy. So I try the Mom and Pop little markets. We try and park close to the entrance (handicap tags really help) and then if I feel off, I just ask my husband for the keys and I go lie down in the car with my feet up on the dash board.

Once you get a handle on some of your symptoms you will be able to do more things.

Good luck on your healing journey.

EM

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Thank you, EM, Mary and Kathy,

I appreciate your honesty and support. I figured I would feel pretty bad afterwards. That's why my husband and I got a hotel room right at the Clinic for that night, so I wouldn't have to travel four hours home, feeling so bad. Right now, I'm mixed. I know this is it: I'll finally know all that I'm facing and be able to start dealing with it. But, on the other hand, I'll finally know what all I'm facing and have to start dealing with it. ;) I know you've all been where I am and understand. I'm so very thankful you're here.

Everyone, have a great Easter this weekend and know that all of you have been in my thoughts and prayers since I joined this forum.

LindaJoy

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linda,

My heart goes out to you! I can relate to every symptom you speak of, I to deal with all of it. I was diagnosed with fibromyalgia 15 years ago, and POTS 1 1/2 years ago. I am dealing with the muscle pain, cramping and weakness although the strength is there just my muscles collaps when using them. Mostly thighs, shoulders, upper arm, neck & facial muscles. No definate on why yet. I also have this flare up which knocks me down bad and I get this flushed feeling in my chest neck and face. Then it tingles and I get this adrenalin rush feeling. This sets me off into tremors and violently shaking. Some docs say seisures others dont know. I hate the waiting game and not getting any where too. Be patient stay with us and no dont worry about MSA for now. its normal to think of it with all the symptoms, its in the back of mind now and then too. But there could be a combo of illnesses causing this all to happen,. Its hard for doc. to sort it out and very frusterating for us to deal with it until they do. Hang in there , I will be rooting for ya.

Take deep breaths relax and know we are here for you!

Hugs,

Brenda B)

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Thank you, Brenda. I am so sorry to hear that you're suffering so much, too. Have you had the tilt table test yet? I'm sure you have, but I just wondered. What doctors have you seen? Do you take any medicines? What helps you? I also have the adrenaline rushes that precipitate the shaking. My mom stayed with me last week for two nights since my husband had to work, and I was shaking so badly in the middle of the first night, that I woke my mom up. I took a Xanax and after an hour, it helped to calm everything down. I don't feel like they're seizures, but I guess I don't really know what a seizure feels like. I always thought that you sort of fogged totally out during a seizure and I don't do that--I stay fully aware. I can even talk, although my teeth are chattering so hard during these spells that I'm afraid I'll break them. I'm shaking, like I'm freezing, but yet my feet and hands are sweating. It's so bizarre.

Please hang in there, too, Brenda. What a fun time we all have, huh. B)

LindaJoy

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In my late teens and 20s, I had episodes that I'd have described exactly that same way--the teeth chattering, the shaking, etc. It's good that you know xanax helps at times like these, and that you've got some on hand. (I didn't have any meds at the time; I just waited it out, and it was tough.)

best,

m

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Hi, Merrill,

You don't have these spells anymore? Is that because you're on medication that is working? I just started having these. I can't remember ever having them before in the ten + years I've had this condition. They're quite unpleasant, but when that Xanax kicks in, it's nice to actually feel your body calming down. That sounds weird, I know, but it's nice to actually feel a medication doing something for me when so many I've tried don't do a thing.

Linda

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