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help, guys! nervous about tests next week. . .


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hey all,

you know Im going for tests in the National Hospital of Neurology next week? Well, I'm worrying about it already. :o My cardio here told me I need to have my bp taken by special machines that go on your finger tip and can record the bp with each beat. but I think the London hospital still uses regular machines, which can take up to 3 minutes to pick up a reading. and by then, quite often, my episodes have passed :o

So THAT's worrying me. :D:unsure:

But what's ALSO worrying me is WHAT happens if I get to the end of the week of tests and they STILL don't know what to do to fix me? :o What then? :o I will be so unhappy...because I've pinned all my hopes on going to the specialists. I am so afraid of being told that no one can find a cause for this, and having it blamed on 'stress' or some other intangible and nebulous term. I want to know what causes this, and I want it fixed. B)

I have been taking readings of my pulse and blood pressure for exactly two weeks, and my blood pressure is clearly erratic--it can go from 76/41 to 196/142...as you'll all remember from a couple of weeks ago when I posted anxiously before going back to Scotland...I've charted all these readings to take to London, just to offer the Doctors extra insight ;) and to prove that even if my readings are ok up there...(WHY DOES THAT ALWAYS HAPPEN TO ME? AM I THE ONLY ONE? :huh::huh: ) they haven't been this past couple of weeks.

Anyone got any ideas on how not to lose the will to live if I still have no answers after all the tests? :( I mean, this is probably what will happen, right? I've never had answers before, why should I get them now? :( I just want people to know this is REAL for me. And that it has almost completely robbed me of the life I used to have.

Sorry guys, i'm having a grey and weepy day, as you can all probably tell :(

Also, can you recommend what tests I should be having? I know i'll be having another tilt, i'm almost sure of that. And a food test- to see what happens when I eat/swallow. Also catecholamines, and an MRI of my head.

but my symptoms are at their worst if I stand up and stick my chest out or stretch. I don't know if that's the same as a valsalva, as I've read that can cause similar problems to what this posture causes for me--pulse and bp shooting up or plummeting down, but never staying "just right"? anyone know anything about this?

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Hi,

I know the feeling. I was exactly like that before I went to NIH. I had been told for 30 years that it was all in my head and one doctor even said I had Munchaussen. I desperately needed to find a doctor who believed in me and would find something.

When I did my first TTT at NIH it was positive within 2 minutes. It was the first time in my life that a doctor could catch my BP crashing in 2 seconds.

It was reallly worth my trip. Now, looking back at it I wonder why I was so worried about going. But when you don't know what to expect it is very frightening. I still remember when the plane took off from the airport I was crying because I knew that it was my last chance to have an answer to whether or not I was pretending to faint and I was ready to hear whatever the real answer was. I was positively surprised when the doctor told me that he had never seen a BP crashing so fast and that I was not pretending to faint. I physically felt like *** after fainting but hearing this doctor tell me that it was real made the whole trip worthwhile.

Good luck on your stay and keep us posted.

Ernie

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Thanks Ernie. for some reason I thought you were my age- ie twenties...so I was surprised when you said that for 30 uyears you were told all sorts of nonsense about your faints.

What worries me is that whenever I see a Doc, my bp is usually too high for me to faint- does that make sense? It's like too much is going on? And it's always in my mind, especially after what one silly Doc told me before Christmas--that it was in my head-- what if it IS in my head and I don't know? But how can moving in a certain way make my bp and pulse go up to 200 ish?

Surely it can't? It just doesn't make sense. I want it to go away for good! I can't bear the thought of living like this any longer...my life is not worth living when it gets bad.

:D

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Persephone,

PLEASE hang in there. We all have times like that. Atleast I can speak for myself. I feel that way VERY often. I first started having symptoms at age 18 and have never lived "normally" since. THings have just gotten prgressively worse over the past 2 yrs. But everyone is different. You may get some good answers and be able to be treated to where you can live a normal life. Don't take this the wrong way, but as a friend, I feel the need to tell you not to get your hopes up TOO high. I was like that when I finally found out what I had last yr (POTS). I was hoping DR Grubb was going to give me a miracle cure. I left crying my eyes out, he was wonderful but truthful.

It's just the same with my son, 17, who just got diagnosed. He is going through a rough time learning his limitations and going through the whacky symptoms, trying to function and keep his head up. I can't even tell you how I feel knowing I gave it to him. I don't even want to go there.

Also, PLEASE don't let ANYONE, including the drs, to tell you it is in your head. I went through that for 18 yrs. When I hear that I see red. DOn't doubt yourself. You knkow your body and you know something isn't right.

Try and look at it as a positive note, atleast you will have a name for what is going on-other than it is "all in your head". I remember one time being put in the hospital when I was 22 for a "nervous breakdown" even though they put down my diagnosis as syncope. They kept a monitor on me the whole time( I was there a week) and my HR ranged from 40's-200. I don't even recall what my BP's were but they were whacked out. Yeah, that sounds like a nervous breakdown to me. Not being able to stand due to passing out, V/S out of whack, etc.

Just don't give up. I have to keep telling myself that as well. It is so hard because NOONE understands what we are going through but each other. No matter how hard they try-or don;t-NOONE truly understands us. My gosh, it's like having every disease and condition compounded into one.

I am so sorry you are having a hard time. I really can't recommend many tests because all I have ever had was monitors, holters, ekg's, echos, cath, stress test, tilt, labs, CT of the abdomen, and an MRI of the head. I have never had a full workup with a neurologist, endocrinologist or some of the others that I have read here. As a matter of fact, I saw a neuro for a VERY brief visit and he said he didn't know anything about POTS and left the room.

I have often wondered if I would benefit from all the other consults that many people here have had.

I wish you all the luck and hope in the world. If you ever need to talk, email me personally if you would like, I check my email often.

Wish I could be of more help.

Sending you many hugs,

Danelle

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Hi Persephone - I really know how you are feeling, and after so many bad experiences its like you fear what is around the corner.... I have been there more times than I can count.

The one thing that I can say to you is that no matter what you are told never give up finding a Dr that will confirm your diagnoses and help you. I have had more doors shut in my face than ones that opened for me... I have been ill since I was 22..now 33..... Its been a long journey and along the way being told I was depressed anxious, crazy...etc etc... But I finally have answers, and help and have been able to get functional again....

From what I know of the hospital you are going, you are in good hands... I have tried to get a hold of my Friend this week , but have not had any luck. When will you be leaving?

Hang in there.... I have faith that you will get the answers you need.....

:D

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Guest Mary from OH

Persephone,

Have faith my friend. No one has ALL the answers. And I truly believe there is no "one" answer to this disorder. Try not to go in hoping for a "cure all". I know how crazy it is to be sick all the time and have these drs. not be able to name what's wrong or be able to help you. It's $%^& frustrating!!!! :D

You'd think nowadays that modern medicine could do much better!! But, remember, it IS the PRACTICE of medicine. Just pray that they will find more info and that they will piece together more pieces of your puzzle to help you. Long ago, I've given up on "finding a cure". But, I pray that your visit is a successful one. It sounds like you're going to a great center with wonderful drs. Relax. Let the drs. do their work and your body be it's normal crazy self. I know, easy for me to say!! Believe me, I have felt the same as you many times. In fact, I had given up going to drs to find out what was wrong with me! I found out by accident what was wrong with me when I switched primary care drs. and she flipped out about my tachycardia. I thought she was nuts. My heartrate has always been that fast and noone else has ever been concerned. My blood pressure is very low and the drs always told me that as long as that was low, I was ok. I was shocked when I was sent to a cardiologist (EP). And even more shocked when I had to go through all this testing and found out all these things that were wrong with me. It was strange though. All the pieces of the puzzle started fitting together. My POTS, my Fibro, my Migraines, my GI problems, etc..... It was amazing.

Hang in there!! You aren't nuts!! We know that!! I pray you get the answers that you are hoping for. :unsure:

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Guest Julia59

Persephone,

I'm sorry your having all this confusion, I know how it is as I just had an appointment this week for my upper spine issues. While I have two nwurosurgeons telling me I have various different issues, I have one now that said it's not an issue at all. Meanwhile I have lots going on that are telling me the other two are right---but then again all are respected neurosurgeons.

I'm in your corner. Just go in there with head held high---not easy to do physically---- :D but you know what I mean. Don't let anyone make your feel like this is not a big deal, because it is. You are merely looking for help to make your life more livable. Everyone deserves that right.

My son is going to be 24 next month on the 21st. He displays a lot of the POTS symptoms. Just today he complained that his heart was already racing. He ate a brownie from tha batch I made for him to take to the party he and his girlfriend were going to---it's her birthday today. He struggles with a racing heart every time he eats, and he also gets light headed and has panic attacks.

He has had this for some years now, even before I crashed wiht POTS. This is discouraging as it might mean it is genetic. I was hoping he would be spared this mess. Right now he is living his life----and not taking any meds or seeing any specialists. I want him to remain that way as long as possible, before he has to face the mess with the medical community that we have to deal with. I just want him to still have fun.

In fact he has a friend in England, who was here in Toledo, Ohio for about three years going to the University. He is now an astrophysicist (spelling?). He is now back in Cornwall England---on the coast. They communicate by E-mail. His name is Matt Brown. The funny thing is that is the nick name I have used for my son for years----MR. BROWN. I also call him BUDDY ROWE.

I'm wishing you the very best outcome with your appointment. I'll have you in my thoughts and prayers.

Hang in there---and as I tell a lot of people with a lot on their plate-----"try not to think too much".

Julie :0)

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Hi,

I started to faint when I was 5-7 years old so I have lots of experience. I still feel 18 years old in my heart.

Once I did a TTT when I was so upset and angry and my BP would not go down. I was wondering if the doctor would think that I am making it up. I had all the adrenaline symptoms except no BP drop. Then still angry and upset my BP crashed in 2 seconds and I fainted. The doctor explained that it took me longer to faint but I still fainted and he confirmed the NCS and POTS diagnosis.

When I went to NIH I was prepared to deal with the fact that it was all in my head. I thought to myself that it was the last place I would try. If the doctor told me it was psychogenic I would see a psychologist and deal with it. When I got there and was standing on the TTT I kept wondering "Am I making this up? I want to know the truth." So when I fainted after 2-3 minutes I was so scared because I fainted with the same symptoms I had in Canada when they told me I was pretending. So when I woke up and Dr Goldstein told me that he knew what I had I almost told him: "Yeah sure it's all in my head". But before opening my mouth he said: "Your BP crashed in 2 seconds and this is really really rare. That's why you were misdiagnosed for so many years (it takes 15 seconds for the regular BP cuff to inflate). I was paralysed and could not answer Dr Golstein but I would have liked to hug him and tell him how wonderful he was for finally finding what is wrong with me and for telling that there is something physically wrong going on in my body.

We learn to deal with a chronic disorder one day at a time.

I still hope that one day researchers will find a solution for us.

Ernie

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Persephone, as everyone above said. Just want you not to fret and know we have all been in this place you are right now. Don't let them label you, and even if they do, what does it matter. YOU know something is terribly wrong. I have a pretty strong feeling they are going to see some stuff with you, just be prepared for them to not know quite what to do with it. It's the nature of this beast. Take some deep breaths and hold on for the ride. Keep us informed....morgan

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