New And Scared

[Tony]

Sorry for the long post. I've read quite a bit on this forum already and it's really helped me to begin to get my head around this thing.

It all began on 12/4/08. Around lunch time I began to feel a pulsating minor pain in my head... very specific location. I didn't think much of it though and walked out of my office to my car. I began to drive home (still feeling the annoying head pain) when about half way home I suddenly began to feel woozy... precursor symptoms to passing out. I quickly pulled over and put the car in park at which time I blacked out. I'd estimate that I was out for 5 minutes or so but I was alone so no way to know for sure. When I came to I was clamy and my heart was racing. I didn't feel good at all. When I got home my wife said I looked very pale. Off to the ER I went. They did an MRI/MRA, blood work, EKG. All came back normal. They handed me a piece of paper discussing "Tension Headaches", referred me to a Neurologist and sent me on my way.

Over the next month I pretty much stayed at home on the couch or in my bed. I'd get what I'd call dizzy spells at least once a day. I had tingling/numbness sensations on the top of my head and warming sensations on both my arms. It was a rough time. I went to a Neurologist who did a physical examination and had an EEG done. Everything came back normal and she diagnosed me with Migraine headaches. She said she couldn't do anything else for me and pretty much said that the underlying cause was anxiety (isn't that familiar). I am by no means an anxious person by nature.

I went to see another Neurologist because the first one was clearly not very good. He said that maybe this was Orthostatic Hypotension. He referred me to a Cardiologist to get a tilt table test done.

The Cardiologist pretty much immediately suspected Neurocardiogenic Syncope and ordered an echo, halter monitor and a TTT. By now the tingling/numbness and warming sensations have stopped. Now I just feel a touch of nausea, lack of appetite, brain fog and just not feeling all there.

Echo and Halter were supposedly clean although I'm sure when I look at the detailed report that will change (I'm sure there were tachy moments in there that were glossed over) I took the TTT and failed in a spectacular fashion. My heart rate while laying down was around 85. When they put me upright my hear rate jumped to around 125-130 and stayed pretty consist for the 4 minutes that I was conscious. Yep, I blacked out and no they never had to give me any drugs. When I came too the doctor that was monitoring me said that NS was basically confirmed and let me know that my heart had actually stopped beating for 9 seconds. Yep, I was dead for 9 seconds.

So yes I'm quite scared at the moment and am not sure where this will all take me. Based on the information on this site though it sure seems like I've got NS/POTS at a minimum. I'm going to meet my Cardiologist tomorrow to discuss the results and I'm interested to hear what he has to say about what my heart rate was doing. I've also finally found a good Internist that seems to take a genuine interest in my case. She's already thinking about hormonal causes and is referring me to a good Endo in addition to doing some blood tests of her own and a 24 hr urine catch.

So that is me. I'm in my mid thirties with a wife and 4 year old at home worried to death. We know our lives are going to change but we don't know how bad it's going to get. I've recently gone back to work. I do this by having my wife drive me, drinking plenty of water with salt in it and taking it very slow.

Thank you for letting me tell my story. If anyone has any advice I'd appreciate it.

God bless

Tony

[EarthMother]

Welcome Tony.

Advice? Sure. Don't Worry.

Isn't that so funny when people say that to you? Especially "doctors". But even though your situation looks and feels dismal at the moment ... there are really some good reasons why you can take assurance that things are are all working their way around and in your favor I might add.

Many people have been through a dozen doctors in a dozen years just to even get the tests done that you have had so far. It sounds like you have a really good physician network and you are getting the procedures all done in a timely manner. By the way you described the beginning of your symptoms it also sounds like you fall into the "sudden onset" category. It is quite possible all of your symptoms can clear up just as mysteriously as they started.

Right now you are in a wait and see, day by day, discovery phase. Feel assured that you have been able to return to work and that even though it feels terribly slow ... that progress is happening. Sometimes we have to just take that on faith, until we see it in sight.

Hang in there!

~EM

[flop]

Hi Tony,

welcome to DINET - you've found the right place to read all about POTS and NCS and to ask questions and share experiences with others.

Your story seems similar to mine with a sudden onset of severe symptoms. I know many fo us have been told we have "anxiety" or "stress" related problems, or even worse the classic "there's nothing wrong with you".

It sounds like you have found a good physician to work with and you have had the important test (tilt table). You are right that a sudden leap in heart rate from 85 to 130 is consistent with POTS. It also sounds like your heart slowed dramatically and paused at the time you blacked out which would fit with neurocardiogenic syncope. Hopefully your doctor will go through all the results with you and explain what the test showed.

Don't panic about the 9 second pause (easier said than done, I know!). The brilliant thing about syncope (fainting) is that the body has a fail-safe mechanism,when we fall to the floor blood flows back to the heart and stimulates it to start beating again. The 9 seconds was probably the length of time it took for the doctor to get the tilt table back flat again so in real life you would have fallen over in 1 second and things get back to normal even faster. It is helpful to tell friends/family that if you are going dizzy not to hold you up but help you to lie down on the floor.

Fluids and salt are a good starting point for treating both POTS and NCS. Depending on your test results and daily symptoms your doctor may start you on one of several medications (see the "what helps" section of the main DINET website). We all react differently to meds so it is a bit of trial and error to find what works best. Many of us find starting on small doses of meds reduces problems (we are often more sensitive to the effects of medications than "average" people).

Good luck at your next appointment, let us know how things go.

Flop

[juliegee]

Welcome, Tony!

Sorry you had to find us, but glad you are here. I know things feel dismal at the moment, but many of us here have found effective treatment plans and lead "normal" lives. Chances are, you will figure this out. You've gotten a quick DX, and I'm certain, with your doctors, you'll find a regimen that works for you. Stick around, ask questions, and read all you can- especially from the archives. Many here, including me, have learned a wealth of information here that has helped us/our doctors, and led to our recoveries.

Keep us posted on your progress-

Julie

[Shimoda]

Welcome!

I know it's scary. Just take it day by day. That's really all you can do. Sitting there and worrying about it, although tempting, doesn't help at all. Push your docs to give you meds or they never will.

Most importantly, you have a wife to support you and if you want to talk feeling crappy you've definitely found the right place.

What was it like being dead? Anything cool happen?

[dawn]

Hi Tony,

Welcome to the forum.

I was 35 when my symptoms got really bad. I am now 53. You will probably find that you will have days that are not too bad and bad days.

I was off work for several months and then returned to full time work for 13 years. I finally gave up and am now on social security disability.

What part of the country do you live in?

It is very important to not let fear control your life (easier said than done). I became so anxious about what may happen that I was agoraphobic.

Stay connected to people who understand. Educate your friends, family and co workers. You will probably find that people become compassionate and

helpful when they understand what you are going through.

Don't feel guilty.

You are fortunate to have found a good internist, I worked with a wonderful one for 17 years. Never had much luck with neurologists or cardiologists.

Fainting is scary, been there many times. Assure yourself that your body has back up systems that kick in when you faint.

You will find children are very understanding. I always had foster children as well as my own children. They would tell me when I looked like I was going faint (my speech would get slow), they would just say "mom, it's time to lay down and put your feet up." I can't tell you the number of times we laid in the grass and counted stars (instead of counting my heart rate) to distract myself. Those are some of my fondest memories. I finally did not "let fear rule me."

I know no matter how bad things get, God has his hand on me. I am his child and he cares about me.

Dawn

[ramakentesh]

Tony - one of the main things about the sudden onset is quite often the worst symptoms come on in that first, and worst episode. Chances are you will improve as most patients do.

Hopefully they will find some medications that help and as you read you will discover the things that do and dont work for you.

[firewatcher]

Welcome Tony, we are all sorry that you are here, but happy that you've found us. The best advice I can give you is to first calm down...it helps everything.

Next, get copies of ALL your test results, blood-work, labs, etc. ALL OF IT! and keep it organized and in one place. Take it with you to every doctor's appointment and get print-outs of everything. Unfortunately you are now almost totally in charge of your own healthcare. Most doctors won't know what you are dealing with and you will have to educate them, not the other way around. Search here, it is the greatest single conglomeration of information you can find on the web or in the world on dysautonomia/OI. It is strangely empowering and positive for you to search for answers and organize your own information, it gives you a sense of control over the uncontrollable. If you can't find it, ask. Many of us are really good at internet searches and can find information and studies quickly.

Take care...and try not to worry.

[momofsara]

Hi Tony, and welcome. You have found the exact right place for information and support. I'm happy it seems as if you have found a good medical team to work with. Hopefully they will get you started on some measures to relieve your symptoms. As firewatcher says, get and keep copies of all your test results. I cant tell you how many times those have come in very handy in Sara's case (btw, that is my daughter who has severe progressive dysautonomia) Its good for you to have these reports to refer to and also to give to new doctors. I hope you will cease having symptoms and will return to your previous good health. Take care and keep us posted, we all care about each other here. And once again, welcome to our world !!

[Tony]

UPDATE

Thanks to everyone for your kind words and advice. I'm getting copies of all my test results together and will keep my own file as suggested. It definately helps knowing that I'm not alone and there is a place I can go.

I saw my Cardiologist last week to discuss the results of the TTT. He diagnosed me with Neurocardiogenic Syncope as expected. I inquired about what my heart rate was doing and whether he had heard of POTS. He said he knew about POTS and that it was a possibility but he wasn't ready to diagnose me with that as of yet. He seemed to think there were a number of things that could cause my heart rate to do what it was doing at the time. I would have asked some follow up questions but to be honest I was exhausted.

He told me to drink plenty of water and salt my food. He also prescribed me a Beta Blocker. I've started taking 12.5 MG of Metoprolol Succinate. After a week of that I'm supposed to increase my dose to 25 MG. Then after 14-21 days I'm to call him back and let him know how I'm doing. He made sure that I knew that this wasn't the only treatment to be tried and that this was just the first thing we'd try. He also recounted a story of him successfully treating another NS patient who was a bedridden college student. She is now leading a relatively normal life (not running any marathons or anything but attending class and doing normal things). That gives me hope but we'll just have to see. I'm mostly happy that he is at least aware of these conditions and have treated people for them.

I've been on the pill for 3 days (today is day 4) and the jury is still out. I had been fighting a viral infection (congested Sinuses and Bronchitus irritation) for 3 weeks prior to taking the pill. On day 2 of the pill I actually ran a fever (which I never used to do). It hit 101. The next morning I felt much better and the infection was gone. I don't want to get my hopes up but it was almost like my body finally started to get a break from whatever was causing the POTS stuff and could focus on the infection. My heart rate has started to act a lot less erratic too. When I stand I get a reading in the mid 90's instead of 120+. I still feel tired and weak but I've lost a lot of muscle mass over the last month and that will take time to build back up. I don't know if blood pooling is an issue for me as of yet. I don't notice anything when I stand (no coloration changes, swelling, etc.) so I'm hoping that it isn't a major underlying cause of what is troubling me but I suppose only time will tell. Each day has its highs and lows. This morning was bad but I struggled through it and after lunch I started feeling better. If I walk for any more than 50 yds or so I start to feel light headed too. I'm just tired and weak. I suspect this will be the norm for at least a while.

I'm going to see my Endo tomorrow for the first time. Hopefully the Cortisol blood test and 24 hr urine catch results that my Internist ordered will be in by then. By the way, I delivered 7 liters of urine in 24 hours. That was a crazy amount. I do feel that was not a representative day for me though and was more of me unloading some retained water from the prior 2 days but regardless, wow that's a lot. I'm looking forward to what my Endo's thoughts are although I'm guessing me being on the Beta Blocker will limit what testing can be done.

Thanks for letting me share my experiences. I'm hoping that things will start to get better but am taking it day by day, hour by hour.

God Bless

Tony

What was it like being dead? Anything cool happen?

Nothing cool happened unfortunately. Everything went dark and then I came back as if I had been in a dream state. So I'm sorry to say that I did not see Elvis.

What part of the country do you live in?

So Cal. Good area to be doctor wise... there's one on every corner it seems.

[dsdmom]

Tony

I'm glad to hear that things with the doc went well - it is great that you already have someone who has been able to diagnose you and knows about these conditions. Unfortunately most likely this won't be an overnight recovery - but it's good to know you're on the right track. Hang in there...I know this isn't easy. I'm 32 w/a 34 year old husband and 2 year old daughter. I tried imagining my husband being the sick one and I am sure it's got to be very scary for your wife right now. Let her know that there is plenty of support around here for her, too, if she needs it.

[morgan617]

Welcome Tony, I am glad you have found a spot to go. 7 Liters is A LOT of urine to spill out. My first thought goes to blood sugars. Have they been okay?

I was getting 5-7 second pauses, but it just made me feel crummy. I got a pace maker for it and it helped that part quite a bit. I am glad you have chosen not to drive, since your first faint was while you were sitting. Some people are comfortable with driving because they don't have problems while sitting, but that is obviously not the case for you.

It is to be expected that your life may change, but you also mention that you had been fighting a virus. POTS that begins during or after a virus has a better chance of resolving than long term lifelong problems. I hope that is the case for you. I hope you find this site as helpful as so many others have. It's a rotten place to have to be, but if you have to have a place like this, it's the best. morgan