My Story So Far

[Jordan5815]

Hello,

It all first started with chest pain beginning June 2007. I went to the cardiologist, he ran some tests. In August he said I had pulmonary hypertension. About 1 month later he said I do not have pulmonary hypertension the pains subsided but I started getting really tired all the time. I was in Colorado at the time and was trying to get out of the altitude because with pulmonary hypertension you cannot live in high altitudes. I also got strep throat twice in November which was strange because I have not had that for like 8 years. I am no longer in Colorado. I am sticking with lower altitudes until the Drs are able to resolve this issue. Since I returned to a lower altitude I have had so many problems I thought it was an arrythmia for a while because I would just feel awful and my heart would just take off really fast. I had that problem for about 1 month before I went back to my cardiologist, at the same time I have been to the ER 5 times I thought something was seriously wrong. I would have spikes high in my blood pressure and my heart would go to 180 for no apparent reason. I was on my way back to the Houston Texas from Arkansas, My mother was driving and I felt this HUGE ripping in my heart next thing I knew I just extremely dizzy started to see colors everywhere, next thing I knew I checked my pulse I could not feel it everything was getting horrible I'm like call 911 now. Parts of my body started going numb and (I just started shaking rapidly not a seizure). I got into the ER they told me my potassium was low and sent me back out. I have been to the hopital more then that with potassium ok, I got to see the cardioligist he said it was an endocrine issue also said let Texas Childrens deal with it. I ended up going to Texas childrens, seeing the surgeon I had for fundoplication surgery for GERD. He got me into a renal doctor she noticed my blood pressure went WAY up when I was sitting and standing, On top of that my pulse raised to about 180 sometimes 199 when i stood up. She ended up putting my into the hospital where they did tons of other cardiac tests and also checked me for a Hormone producing tumor called pheochromocytoma, everything came back normal and they released me and said it's nothing. Even my Primary Care Physycian saw an attack happen to me in his office turned white in the face and said get to ER now don't even wait for an ambulance. I got into the indocrine checked me out completely nothing was wrong, saw tons of other doctors and they all said Cardiac so I went back to the cardiologist he said he thinks I may have some form of dysautonomia which I had already researched alot. He hooked me up to a monitor for 1 month to clock my heart whenever it goes over 150 and runs an ecg which i send it via phone. I also did a tilt table test and my heart went way up as well as my blood pressure, ( Don't want another one of those) lol. So now I'm stuck here with this heart monitor writing this.

All I know is whatever I may have it is kicking my butt hard. It's like going into a fight with a professional boxer blindfolded. stuff I have.

Dialated pupils, slow heart rate, fast heart rate, very low blood pressure, very high blood pressure, chest pains, I almost always have a palpatation I always feel my heart beating, I cannot gain weight I'm 16.2 body mass index ( I eat alot) I'm tall and skinny . Tons of just aches, I am Constantly Tired occasionally I'll just get this big burst of energy from no where. I have a very hard time concentrating I'll forget what I'm talking about in the middle of a conversation. I definately have a fast heart rate when I stand when I sit it's normal and when I lay down for a while It goes very low. Also have been getting nauseous lately just feeling sick that is the bottom line.

Do you all think this could be dysautonomia, if so what form do you think it could be? I really want to get a diagnosis and hopefully get better, I'm 18 was in the ER on my birthday because of this stuff. I'm pretty blessed in the respect I work from home since I own alot of websites but it still gets hard to work at times. I don't even know what to do anymore.

Grrr, The suspense is killing me lol.

I look forward to your responses!

Thanks,

- John

[MomtoGiuliana]

It could be dysautonomia. Sounds like you need to be evaluated and under the care of an electrophysiologist.

[Jordan5815]

The electrophysiologist is who said I probaly have dysautonomia and who did the tilt table as well as the heart monitor that is going to be hooked up until the 30th of june.

[flop]

A lot of what you are describing sounds like dysautonomia. If your heart rate shoots up when you stand then that would point towards POTS but there are other forms of dysautonomia too (and this forum is for all types of dysautonomia). It sounds like your EP cardiologist is doing the right sorts of tests so hopefully you may get some answers soon.

There is a helpful book by Dr Grubb "The fainting phenomenon: why people faint and what can be done about it" although you haven't mentioned fainting as one of your symptoms only 30% of people with POTS actually faint. The book describes how the autonomic nervous system works and what can go wrong, there is also a chapter on POTS. You may be able to get a copy through your library or find it on an online bookstore (I got my copy from Amazon).

Flop

[Jordan5815]

A lot of what you are describing sounds like dysautonomia. If your heart rate shoots up when you stand then that would point towards POTS but there are other forms of dysautonomia too (and this forum is for all types of dysautonomia). It sounds like your EP cardiologist is doing the right sorts of tests so hopefully you may get some answers soon.

There is a helpful book by Dr Grubb "The fainting phenomenon: why people faint and what can be done about it" although you haven't mentioned fainting as one of your symptoms only 30% of people with POTS actually faint. The book describes how the autonomic nervous system works and what can go wrong, there is also a chapter on POTS. You may be able to get a copy through your library or find it on an online bookstore (I got my copy from Amazon).

Flop

I've only passed out one time recently when i had an attack (had an out of body expierience) all of a sudden i wake up remembering it and my friends told me I passed out.

My mom said I used to faint when i was younger but i dont remember was along time ago saw neurologist he did not find anything. (atleast 6years ago)

Thanks for the wonderful information definately going to check it out. I did forget to add I also have alot of insomnia don't know if that is related or not, would not shock me tho. My doctor does not believe I have POTS but does believe I have a form of dysautonomia, reason is my blood pressure does not drop when I stand It goes actually pretty high. (He is not a dysautonomia expert tho) He did tell me if it turns out to not be a cardiac problem he is going to send me to Vanderbilt University In Nashville, Tennessee.

btw, does POTS go away in some people by the time they are of 35 years old? I'm curious.

[Ernie]

HI,

In my case it is genetic and we don't get cured by 35 years old. We get it from the day we are born to the day we die.

[ajw4790]

Hi,

Welcome. Yes, much of it sounds like dysautonomia. As far as type, it would depend on the testing etc. Where did the 35 y/o come from?

As far as age etc. related to dysautonomia, if you do searches on the topic you will find many previous discussions on it.

It may depend on the cause and onset of dysautonomia to determine how long it persists. I think research has shown people can, but will not always grow out of it, and they are more likely to grow out of it if it was not present since birth (genetic) and while still relatively young. Also, depending on what else is going on. Say like for myself, because there is nerve damage, that is not going to correct itself, there are going to always be some symptoms that I will have.

Hope that helps!

[Csmith3]

Hello John

I would echo the other comments, and just wanted to add that until I found some helpful medication to control the tachycardia, I really struggled to keep my weight up despite eating a huge amount of food. I was also convinced that having a low body weight exacerbated my symptoms. Alas, now I need to exercise some portion control!

If you were fainting a few years ago, perhaps there is an underlying problem and it is common for people to have good and bad patches with dysautonomia. For me, the key issue is being able to minimise the bad patches rather than holding out for it to go completely. I found I felt worst at the age you are now and improved in my 20s. However, I'm not sure how much of the improvement is related to age and how much was finding appropriate medication (getting a diagnosis and medication took many years for me - you sound like you are making better progress) and also lifestyle changes as I learnt what helped and what didn't.

Best wishes,

Catherine

[Rachel]

Hi John,

Welcome to DINET. I hope you find lots of help, information, and support here.

Many people, doctors included, are mistaken about blood pressure dropping with POTS. It does not have to drop to have a diagnosis of POTS. Some POTS patients actually experience a rise in blood pressure upon standing. POTS is defined as "the presence of orthostatic intolerance symptoms associated with a heart rate increase of 30 beats/minute (or a rate that exceeds 120 beats/minute) within the first 10 minutes of standing or upright tilt." If you are interested, you may read the full article here: The Postural Tachycardia Syndrome.

For some people, dysautonomia will go away. Others will have it for life. It just depends on what you have, if it is genetic, due to a virus, etc.

I hope your doctors can find the right diagnosis for you and a good treatment plan.

Rachel

[Guest tearose]

Just wanted to welcome you and hope that you will find more answers.

It is good you will have a ttt and June 30 will be soon!

My low bp usually is steady in the morning but once I get my hydration and electrolytes and compression on, I can hold it at 100/70. (I often start at 70/58.)

Anyway, hang in there, read from the archives here and ask your doctors lots of questions.

best regards,

tearose

[Jordan5815]

Ohh ok, yeah my heart rate increases RIGHT away not even 5 seconds when i stand and it stays there. sometime I feel like my chest is going to collapse because occasionally when i stand up for a while or sometimes within 10 seconds my heart rate will drop 80 beats per minute in a matter of 4 seconds. It leaves my chest feeling like it's going to collapse literally. any of you expierience that?

Also my heart rate jumps so much like up and down up and down. within 5 seconds apart it constatly goes 40 beats up 40 beats down.

Also are you all really bad in the morning and as the day moves on does it start getting better? My heart rate when I wake up is about 90 bpm and stays there and keeps going to like 180 when i stand up, at night time it slows down to like 55 beats per minute and goes up to about 90-100 when i stand up, I also feel great then.

Reason I'm shocked I have problems with any of this is I used to be a boxer used to have a resting heart rate sitting at 40bpm was in really good shape. This thing has just screwed me lol.

Let me know if you guys have any of those things.....

I really appreciate your help, reason I'm not posting in other threads is because I have not yet been diagnosed and really do not know much about this disease. After I get diagnosed I will be posting around here.

I could also probaly donate 1 of my dedicated servers to help with hosting for this website, I am a webmaster as a full time job

- John

[Jordan5815]

I'm sorry one more question do any of you guys just zone out? Completely

I find myself just zoned out i could be in the middle of a conversation and do something and I just forget completely what I'm talking about...

[juliegee]

Yeah....cognitive fog is a big issue for dysautonomiacs. Once you get on a good med regimen, things should get better. John, it sounds like you have classic hyperadrogenic POTS. That's specific type where your BP also periodically rises. Do a search on this site and Google to learn more. This type is identified with certain blood tests and treated differently. Talk to your electropsyiologist about this possibility.

Julie