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someone please help me, I don't know what to do.


persephone
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I'll try and keep this brief. I am 23.I have fainted since 7 days before my first period at the age of 12. I have always managed pretty well, but two months ago I got a flu like vorus which left me quite weak and made me faint a lot more frequently. The virus has passed, but the fainting is continuing with alarming frequency. I stand and stretch, my heart races and my vision fades. I get tingling, or a sense of electricity through my face and kmy arms,and my head quite often feels sore afterwards, too. It's like there's too much blood trying to push through something that's too tight, and it creates pressure oin my neck. I always have sparkles in my vision even when not fainting. Last month I broke my foot when I fainted on it and this week I skinned my arm by passing out in the bathroom.

No one has ever offered an explanation. I have seen neurologists, cardiologists and countless GPs.

I had a tilt test done two years ago in which I fainted after having a dose of isuprel under my tongue. My pulsewent from 124 to 64 and bmy bp dropped to 76/52. I had a tilt test done again 8 days ago and I didn't faint. But when I stretched my arms above my head, my pulse went from 90 to 160.

The cardiologist kept me in the Coronary Care Unit for a week. Two doctors and five technicians told me that via the telemetry unit I was wired to, they could see an atrial flutter with two to one heart block, that explained my lightheadedness but not the fainting. They told me it was easy to fix. THen the consultant told me this wasn't the case, and that I shold speak to a neurologist. The whole of the week I was in the hospital I kept fainting, continually hurting myself and losing my vision. I felt so weak some mornings I couldn't lift my head. My heart was constantly racing. The neurologist told me he thought I was suffering from panic attacks. I had panic attavcks at 14. They caused me to hyperventilate but not to faint, and felt totallyt different. Now I am being referred to a neuropsychiatrist who deals in unexplained physical symptoms but my mum, dad and friends who've seen these episodes are convinced that I don't have a psychological illness causing this. It happens when I'm happy as well as stressed.

Depression does run in my family, but that is due to a chemical imbalance in the brain rather than any psychological cause, and is a genetic thing I have no control over. I have been on prozac on and off for 9 years. I have noticed my fainting becomng markedly worse since taking this drug. I need to come off it; I don't even feel I need it now. But every time I stop it, I get some very strange physical symptoms. Does anyone have any experience of POTS exacerbated by Prozac or other antidepressants?

We think that because I've been a student for four years and pushed myself hard to achieve top marks, and have a history of taking an Antidepressant, the doctors are now clutching at straws for an explanation and trying to pin it on depression or anxiety.

Even if the doctors DID tihnk I was having panic attacks, how could they let me out like this, unable to stand without losing my vision, finding my hands and feet going cold and getting palpitations? For the entire time I was in CCU, I was confined to bed, not allowed up without a nurse being in the room and had to be hoisted in and out of the bath and supervised the entire time incase I drowned. Yet hours after this I was told to go home and relax over Christmas. This condition is totally debiulitating.

Where do I go from here? If anyone can offer my any advice, please email me through my profile or post here. I just don't know what to do. I am at the end of my tether.I just want my life back. I can't tell you how let down I feel by the NHS and how angry I am that no one will take me seriously. I am a gregarious, intelligent outgoing young woman who plans to embark on a PhD, not a neurotic wallflower who suffers from subconscious panic attacks at the slightest thing. This neurologist even tried to imply that something traumatic happened to me when I was stretching as a child which is why I faint. Have you ever heard anything SO ridiculous?

Please, please help! Anyone wiht any information or insight would be doing me the hugest favour. I am now at my lowest ebb ever.

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Hi,

Welcome to this board.

Have you been checked for subclavicular obstruction? This causes a fainting episode when we move an arm?

Have you tried medication for fainting since you had a positive TTT?

That's the easy way out for doctors to tell us that we are psychogenic. This way they don't have to admit that they don't know.

Ernie

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Welcome to the board and sorry you are going through so much. Since you faint all the time and your HR fell on the tilt table test, i am wondering whether maybe you have neurocardiogenic syncope? Have you seen a doctor that specializes in dysautonomia? There is a lot of great info that you can read (or print and give to your doctors) on potsplace.com and ndrf.org, including a list of treatments and doctors that might be able to help.

There are lots of folks on this site that suffered for years and saw dozens of doctors before figuring it out. You still have a good chance of improvement if you get the right doctor to work with you to find an appropriate treatment.

-Rita

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Hi--welcome here. Take a deep breath and then a big sigh of relief. You've probably come to the right place ... for support and empathy (because so many here have suffered years and years without correct diagnosis) and information. I have a few questions, of course. Where are you? In the US? Many people here are from other countries--and the kinds of tests, medications etc varies ... even state to state here in the US.

Did you just find us or have you been reading posts for a while? I wish I had time now to search for past threads that would be of interest to you, but you can do a search ... Michelle and Nina are really good at supplying some links so you can read and learn...

I just saw the other posts pop up ... has any physician talked to you about dysautonomia before? Neurocardiogenic syncope sounds a lot like what you describe ...

I hope you get some REAL answers soon and not that psychobabble crap. One suggestion for today if you're not already doing these things: load up on salt, fluids, and star wearing medical compression hose (30-40). These few steps can make a difference (for some more than for others, but it's start).

All the best,

m

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Hi everyone, thanks for the replies. I was told 2 years ago I had NCS and I just kind of coped with it. but after the flu I got in October, theses new symptoms appeared. I stopped feeling everything slow down when I fainted and instead got pal,pitations. The first tilt test 2 years ago confimred NCS- lower pulse and BP but now they appear to be rising. My Tilt test last week was negative so the doctors do think its psychogenic.

I showed the consultant the pages of symptoms of POTS...I can tick off nearly every one, including the thirst, the weird sparks in the vision, the tachycardia on standing and stretching, the shakiness, the exhaustion etc and he hadn't even heard of it. He looked it up (so say) and told me I didn't have enough symptoms to match it, and that my pulse should be faster than 150 (what it was going up to).

Anyone care to expalin more about that fainting thing caused by moving an arm? Who do you see to get treated for it? A cardioloigist, physiologist? I am very interested in this. If you could get back to me I'd be very grateful.

I'm in the UK. I've just finished my degree. I proved the NHS couldn't beat me, I've just finished with an MA honours first class!

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What your doctor is telling you doesn't sound right. POTS is not based upon reaching a specific HR, just having an unusual increase in HR. And many of us ave the symptoms of dysautonomia even on days when our BP and HR are in the "normal ranges." This really strikes a nerve for me, b/c I have gotten seriously wrong advice from doctors this year (one of whom is listed on several websites as being an autonomic specialist), which landed me in the hospital and also sent me on a three month wild goose chase where I thought I had an ear problem in addition to POTS. Of course in the end I learned that all my symptoms were classic POTS symptoms which the drs didn't pick up on. There are a lot of drs who know a little bit about POTS, but a little knowledge can sometimes be dangerous. So I if you feel that the symptoms are caused by POTS/NCS, trust yourself.

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Everyone has given you very good advice. Skip seeing the neuropsych person! I was told I walked funny because of childhood trauma and I actually believed it . I ended up having a neuromuscular disease. Don't go down that path. Iam glad your parents are backing you up. Your panic attacks are probably caused from the autonomic problem. I was hyperventilating all the time until I was treated for POTS with a beta-blocker.

What kind of meds do they have you on to treat the NCS? By the way welcome to the forum.

Dawn

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POTS and NCS have nothing to do with reaching a specific target heart rate. Your doctor is misinformed. It has to do with the differential in heart rate from supine to standing, as well as the differential in blood pressure from supine to standing. Find a doctor who has more of a clue.

From DINET's main site: http://www.dinet.org/pots_an_overview.htm

Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising.

From NDRF's website (www.ndrf.org):

"The normal response for a change in body position, results in a stabilization to the upright position in approximately sixty seconds. During this process, the normal change in heart rate would include an increase in heart rate of 10 to 15 beats per minute, and an increase in diastolic pressure of 10 mm Hg, with only a slight change in systolic pressure."

and, here are some links that might help you:

http://64.233.167.104/search?q=cache:LrfUx...lient=firefox-a

Consider seeing a doctor who is knowledgeable in this area. DINET and NDRF both have physician listings.

http://www.dinet.org/physicians.htm

http://www.ndrf.org/physicia.htm

Nina

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Guest tearose

Dear p, welcome! I don't have the strength tonight to read what every one else said BUT, they are all very wise and usually are full of good ideas and links! It really is an incredible forum. So that is one wonderful thing you have now accomplished for you! I would say that the one most valuable thing you need to do, if you haven't already, is to find one excellent internist and then ask to be sent for the highly specialized tests for autonomic dysfunction. Even if you need to do a test a second or third time, just make sure you are at a top notch institution. best regards, tearose

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Nina (or anyone), I understand that a heart rate increase of 30 or more beats per minute during tilt table test is diagnostic for POTS. I've also heard more than one person say that their heart rate dropped during the tilt. What's up with that? And how do they get diagnosed with POTS (as opposed to another form of dysautonomia) if they don't get the T (tachycardia) in POTS?

I'm also curious about what the correlation is between blood pressure and heart rate.

I'm someone whose blood pressure at the doctor's office is always "good" -- on the low side of normal, but basically just fine. And I'm not a fainter. But I AM tachycardic if I'm awake, with heart rate over 100 (sometimes WAY over 100) no matter whether I'm lying, sitting, or standing. (I don't have a bp or hr monitor--I just count my hr using the clock feature on my computer or with a watch w/second hand.) My hr went up 40 bpm in the first minute of tilt and then stayed elevated.

Anyway, curious minds want to know!

Persephone--the stuff you're describing certainly sounds like one form of dysautonomia or another--whether ncs or pots --or maybe you're transitioning from one to the other... The trick now is to figure out what you can do to help yourself feel better--and stop fainting! That must be sooo hard to cope with! Tach in and of itself isn't a bad thing--so try not to worry too much about that part! I would still advise reading the "what helps" pages on this site...

Take care,

m

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Merrill, this is just my personal observations and opinions. There are few autonomic doctors out there who will say NCS and POTS cannont co-occur in the same person. However, I've been diagnosed with BOTH by several different sets of medical teams, including two of the premier sites in the US. I think there are many variations, sub groups, etc. that are not yet fully understood, and the field is still in it's infancy with regard to understanding the autonomic system.

Nina

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Hello everyone, thanks for the messages and contact...I feel better just knowing I'm not the only one who feels like this.

I just wondered if any of you ever get days like I'm having just now, where when you stand up and sort of stretch, you can feel the pressure in your head as the blood rushed to get to it? I don't know whether the blood is getting there or not because my hands and feet have been freezing all day. I have taken a TRamadol (Zydol) tablet and the pain is still not shifting. I've drunk 5 pints of water in the last few hours and still my lips are cracked with dryness. Anyone else ever get the compulsive thirst or the head poujnding in this way? I also can't see properly; it's like sparkles in my vision. The only way I can describe the way things look to me today is as if it's raining glitter in front of my eyes.

Can anyone offer some advice? I just want my life back :)

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Hi Persephone:

Yes, what you describe is familiar...all too familiar....The fact that you have had a lot to drink and are still thirsty leads me to wonder if you are severely dehydrated. You may want to consider getting IV fluids.

I have periods of time where no matter how much I try to hydrate I am still not getting enough fluids. I always make a point of drinking a lot as I've mentioned in other posts. However, even doing that I have had experiences like yours where I am still quite symptomatic and had to go to the hospital for IV fluids....this is something my doc (Dr. Grubb) recommends when things get this bad. When I have gone in for fluids and had blood work done I have been told that my test results show that I am EXTREMEMLY dehydrated....as if I had not had a drink for a week....and all the while I had been drinking constantly....just another aspect of the regulation problems in dysautonomia.

I have also had the vision problems you describe....I recently read....I can't remember where....in a research report of some kind....that this is associated with dysautonomia as well.

As far as the throbbing head....it is most likely that the blood is not getting to your brain...it's probably trying but your system isn't allowing it to happen....The blood vessels need to constrict in order for the blood not to pool in your lower body upon standing....but this does not always work in dysautonomika patients.

As a short-term suggestion, you might want to consider IV fluids...don't expect to feel great afterwards....it's not a cure-all, but it could help. Also, as my doctor has said to me...you might want to "dabble" in caffeine....I never drink caffeine because it tends to make my heart go nuts, but at times when I can't seem to get things going, I do try a little...it not only gets the heart going but it also constricts blood vessels. Do you normally drink caffeine?

Also, get as much rest as you can! Can you crawl into bed for a while and not get out? The stress of all of this is enormous on your body (and mind)!

Good luck!

Kristen

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hey there! i am also from the uk which part are you from? i have pots but like you its been a long and tough journey. Before i was diagnosed i saw six pychiratrists. i was in hospital for six weeks for my symptoms i was so ill.I faint between 5 and 10 times everyday and have done for the past year.i am still going through the tough journey to try and get treated for it. Ive just come out of hospital in london as they wanted to find a cause for my pots i will get the results next year.

Before i was diagnosed with pots i suffered from depression and was on many different antidepressents. That has gone against me when i see a doctor because they would read my notes and send me to a phychiratrist many times ive been so low ive thought there is no point anymore.I convinced myself for a long time that maybe i was crazy because the doctors have said i was it totally knocked my confidence ,i still am frightened of doctors and ive lost count of the number of times ive cryed in the doctors office.

But then i started to listen to my body and thought 'hang on a minute there is something wrong', and i found the strength to carry on because i knew that i will prove everyone wrong and that would make me so happy.i did eventually prove everyone wrong.

These things are ment to try us. ive learnt so much from being ill and found that i am such a strong person.I still have to stay strong because its not over for me yet i still battle with doctors who no nothing about it.But i have one neurologist who took me seriously am im so grateful.

So id just like to say you will get through this ,believe in yourself even if others dont and keep on fighting.

take care

h x

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