Im New, Scared, And Need Advice.

[JRC09]

Hello Everyone,

My name is Jon, and I want to explain my crazy experiance to everyone here who seems so knowledgeable about Dysautonomia. Only a year an a half ago I was playing college football, and I was in the best shape of my life. I tore my ACL that required me to have reconstruction surgery. The surgery went well, but was very painful. I recovered and I was able to go out with my friends for New Years eve. I probably pushed myself too hard and started to come down with a nasty bug. I was sitting in class one day, and my eye started to twitch. A day later the twicthes turned into full body twicthing and tremors, and when I stood up, my heart would pound with a very strange sensation. I pretty much chalked it all up to a bad bug, and even tho the symptoms were not as bad, they continued to a point that I just pushed to the side.

I lived the past year relatively normal without limitations. I was a little tired, but have been able to workout, run, and experiance a little tachy when working out, but nothing that alramed me. I had been reading a lot about P.O.T.S and thought I was just lucky enough to have very mild symptoms. That was until lask week. I started waking up with more tremors than usual, and could feel my heart beating faster than usual. I also could not stop urinating all weeked, and felt sick, and weak. It was my girlfriends birthday, and I was unable to go on the trip I had planned, I felt horrible. I could barely walk a block without feeling extremly tired. I went to the doctor to get blood and urine tests, which all came back normal. I started going on the internet and looking up MSA and began to get very very nervous, it felt like my body was shutting down. Slowly my body began to regain some of its functions. It has been a couple days, and though I feel better than I did, I wake up in pain, tremoring slightly more, and very tachy. I feel good during the day (little lightheaded), and I am able to do everything I need to do. However, I am very nervous I am going to keep getting worse and worse to the point where I will no longer be able to support myself.

How could a virus do this?! Will this ever go away? Will this turn into Autonomic Failure? I am sorry for panicking, but I have been a healthy extremely active person all my life, and I am afraid at 25 years old everything I love to do will be taken from me = (

Jon

[sue1234]

Welcome Jon! I have no answers for you, but in reading alot through this forum, maybe you can gain some insight on POTS to help you seek a more thorough work-up from a doctor. Well, at least you can go armed with alot more questions to ask him.

[anna]

Hello Jon,

I just saw a episode of Harry's Law (I am the UK by the way) it mentioned about micro head injures in US footballers, now I realise this is a fictional show but I looked post concussion syndrome up on the net and I wander if any of this might lead to ANS dysfunction in any way. I noticed you played college football so I wandered if there could actually be something in it, also I note you had surgery, some of the folk on here have had issues post operatively, so this might be an issue for you.

The main thing though is to try and find a Dr. that knows about POTS and ANS dysfunction to run some tests you could do a poor mans tilt table test at home if you have a Blood pressure monitor.

Try not to worry too much I know that is easy to say not so easy to do but still try!

Sure others will have more to add, take care.

[JRC09]

Thank you,

I am not sure if that has anything to do with it, I have been pretty lucky in regards to concussions. I am very confident that I have P.O.T.S, and considering my family is self employed, we are not going to use insurance to cover my testing. A TTT will only tell me what I already know, do any of you know exactly which test I need to know to figure out the extent of my nerve damage?

On a side note, is this a hit-and-run viral damage that will heal? Or do my new symptoms show that it is progressive and there is still damage being done?

Thank you

[jpjd59]

Jon:

Sorry to hear what you are going through. My 23 year old daughter came down with POTS after a viral illness also approximately 8 months ago. Have you tried using a blood pressure monitor to see what your heart rate is while sitting and then standing? That is how my daughter figured out she had POTS and then she had it confirmed by a tilt table test. The best thing you can do is find a doctor that is an expert in the field. There are not many but I know there are some listed on this website. Hopefully you can find a doctor close to where you live.

[jackiemxoxo]

hello, my illness came on suddenly and was very debilitating 2 years ago. The doctors still think it is a viral cause. I was in the hospital for almost 3 months and i also thought I would completely deteriorate (1 week spent in ICU). However, after getting to my lowest point things started to look up. I am slowly getting better and lead a fairly normal life. I still have symptoms and do not feel as good as i did before getting sick but i do have relapses every now and then. In my opinion, do not freak yourself out by looking up the scariest possibilities without being diagnosed by a knowledgeable doctor. When I would google my symptoms, I would scare myself into thinking I had autonomic failure or other things that would come up. If you have a viral cause, the illness can be self limiting. Make sure you get help immediately because if the doctors find out it is autoimmune some things may be able to be done to reverse the symptoms (plasmapharesis, ivig, etc.) This illness can be very scary and anxiety and stress will only make it worse. So take a deep breath and find a good doctor close to you. Feel better!

[Chaos]

Welcome Jon. Sorry to hear you are going thru this. Unfortunately none of us...nor any doctors...have a crystal ball to tell you what WILL happen. Every one of us on here has very different experiences, has received very different advice (even from the specialists) and are having different journeys on this road of dysautonomia.

That said, you have had several possible things that may be contributing to your problems. It seems that if you are perhaps genetically (or for some other reason) predisposed to this type of thing that surgery may trigger some types of neuropathies which can contribute to your symptoms. Also, viral illnesses seem to be a trigger for many of us.

Many of us on here, including myself have a lot of the symptoms which you describe but have not been diagnosed with MSA. POTS, while certainly debilitating for some of us, is not considered to be life threatening. And, many on this forum (with POTS) have recovered and are out living their lives...not hanging around here on a forum.

Doing a poor man's TTT where you lie down for 15-30 minutes, check your BP and HR then stand nearby your bed without moving for 10 minutes and re check your HR and BP (pretty much every other minute for the 10 minutes) may tell you if you have POTS for sure. You should probably do it for several days and record the numbers so you can show them to your doctor. Besides the TTT, there are other tests that the autonomic specialists do that will give them more information about what is happening with your nervous system. Those can't be replicated on your own.

If you do have POTS, know that from everything I've read and heard from the specialists I've seen, the majority of people get better. You are young so that right there improves your chances of recovering.

Hope you can take some deep breaths, try to relax and do anything you find soothing as that right there may help your nervous system to some degree. I know that's easier said than done but as one autonomic doc told me, "you have to try to stop triggering the reactions that are occurring so that the ANS can re-set itself".

Good luck!!!

[janiedelite]

Is it possible for you to buy an automated blood pressure cuff and do a Poor Man's Tilt Test? You would check your BP/Pulse after resting lying down for a few minutes. Then stand up and check your BP/pulse every minute for 10 minutes or so. Those results can be used to give a POTS or Orthostatic Hypotension diagnosis. Doctors can do it in their office as well, if they want to take the time, and it shouldn't cost you more than the doctor's appointment. If you do have POTS or OH, there are medications or non-med treatments that can be tried. Best wishes!

Oops, I see that someone just replied with similar suggestions. A poor man's TTT may also give more data for a doctor to decide if you have a more serious form of dysautonomia.

[JRC09]

Thank you all for the advice and support. My friends, girlfriend, and family have been very confused with what's going on with me. I had a wonderful trip planned for my girlfriend and not being able to go really put me in a bad place.

I think the anxiety has made things worse, but your kind words have helped a lot. It's crazy how you can go from being a 24 year old collegiate athlete, to barely being able to workout. I hope things get better. Would you guys categorize this as a flare up?

[MandyBrook]

Jon--

I have been dealing with this mysterious illness for the past three years. It began during my second pregnancy. My symptoms would come and go, I'd see my doctor, and always leave with the same diagnosis... Stress, anxiety, hormones... But, I knew inside that there was more to it. A few weeks ago I had my worst flare up yet. I was terrified and confused. How could all this be stress?? I completely understand your fear. I am 24 years old and a mother to three children, ages 3, 2, and 1. Thankfully I have a wonderful support system in my husband and family!!! After the flare up began I revisited my doctor who told me it was GAD and I needed to begin an AD. I knew it was more so I started doing my own research and found this wonderful forum and it's amazing supporters!! I immediately contacted my cardiologist who agreed that my symptoms sounded like POTS and I am now on my way to a diagnosis!!!

I don't know I you are religious but I gained a lot of my strength and peace through God. I will be praying for you, Jon!!!

Mandy

[E246]

Hi Jon,

Sorry you are going through this. The first thing i would say is drink water. Most potsies are advised to drink 2.5 litres a day. It makes a big difference. Anxiety is also a product of the syndrome so try and keep calm. The people on this forum are probably more ill than the majority of people who get POTs. Initially i only got it post virally and didn't know what it was and each time it would go away. I hope you are lucky and get better quickly.

Good luck.

[POTLUCK]

I am also a fan of the poor mans tilt test that can be done by you or your doctor right away.

From a 2012 summary paper on POTS:

Head-up tilt table (HUT) testing is the standard method

to assess a patient’s reaction to postural change. This

involves placing the patient on the tilt table, and measuring

blood pressure and heart rate. Then the table is tilted upright

to a 60~80 degree vertical angle for approximately 45 min

and blood pressure and heart rate are again measured, either

continuously, or at least every 2~3 min.[12]

The standing test, considered to mimic real life, is

another test for POTS.[13] The patient is asked to stand

upright without any assistance, so the patient supports his

own weight and maintains balance.[13] One study suggested

that, though both the standing test and HUT have the same

criteria to diagnose POTS, the standing test had a specificity

of 79% compared to only 23% for the HUT.

[JRC09]

Again, thank you all for the information and support. I will continue to pray, for all of you as well.

Thank you!

[jangle]

Jon, multiple system atrophy has been diagnosed in someone as young as 30 years old, but I haven't seen a report of an age younger than that. Typically that is a disorder that is diagnosed in the mid 60's to 70's of a person's life. You being a college athlete and 24 you would be the youngest patient ever diagnosed with MSA.

Also MSA starts with one set of symptoms i.e. motor symptoms or autonomic symptoms that last for a few years before developing into the other symptoms. Not all at once.

As for the virus, unfortunately some people do seem to be predisposed to developing POTS after a viral attack. The good news is that it is possible to rehabilitate yourself, I myself have suffered from POTS for about 6 years and now I consider myself recovered. I'll send you a link to my blog that I just started but essentially what you're going to need to do is something that should be familar to you already - and that is aerobic exercise.

It seems silly, but actually I myself fell ill with POTS when I was playing football too and I was in great shape. Despite this, it has been a combination of aerobic exercise + Losartan that has helped me recover.

Wish you well

[JRC09]

Hey Jangle,

Thanks for the help. Any and all information would be greatly appreciated.

One more thing, if it is an auto immune response, what is the best test to figure out the cause? My mom has a client that works at Quest labs, would that be a good start? Or is Mayo better?

[issie]

Mayo is un-real expensive.

Issie

[Katybug]

Jon,

Have you found a doc in your area that works with patients that have dysautonomia? That would be a good first step. Treatments vary based on the origin and type of dysautonomia you have. Getting an accurate diagnosis is one of the keys to feeling better. We all experience this syndrome a little differently and even which tests you should have and will be most cost effective vary significantly with the type and suspected origin of the dysautonomia. I know you want a simple answer but this isn't a simple syndrome and the medical community, in general, is not very educated about it. A specialist (although not necessarily one of the big research facilities) is going to be a good place to start. Here is a link to the list of specialists that is listed by state/country on this website: http://dinet.org/physicians.htm

I hope you get to feeling better soon.

Katie

[Dizzysillyak]

Hi Jon,

imho, you should take a look at your diet. Many of us have food intolerances

and even tho my illness started post viral / bug, I responded well to an all natural diet. I didn't take this approach

until after I'd been totally disabed for 15 1/2 years so I may not recover but my life is much better.

Personally, I like dr terry wahls videos on how she recovered from ms via diet, supplements, etc. She was a traditional doctor but is now a functional / integrative doc. Just google her name.

Tc .. D

[ramakentesh]

It's crazy how you can go from being a 24 year old collegiate athlete, to barely being able to workout. I hope things get better. Would you guys categorize this as a flare up?

I guess its a flareup? But i can relate to the story exactly! Two days before my original onset of POTS I was out drinking with friends and was the life of the party, having just got a new drummer in our band. Work was going well and I was just trying to get back in shape after a trip overseas and eating too much heavy foods. Life was looking ideal. then running that night I noticed my heart rate was up higher than usual and I thought it was pretty weird. Still I didnt worry about it. Then in bed my heart went mental and I started feeling like i was going to pass out while lying down. I freaked out completely and assumed i was having a heart attack and my wife took me to the ER. They said they had no idea what was wrong and suggested i drink more water.

Thus began my journey in POTsville. I became my toilet's best friend - peeing four times an hour and drinking twice as much. i was dizzy and weak and when my friends came over I could barely lift my head off the couch, let alone muck around like I usually did. My friends thought i was dying I looked so bad - dropped 10 kgs in a week. My eyelids started dropping and my pupils were different sizes. I was a mess. Over 12 months I gradually improved without me doing anything really other than walking.

Second relapse came on and I just went crazy with the exercise. I hit it full on with running, pushups, chinups, I just didnt stop. Id work in the day and then leave after 7 hours and exercise for the rest of the day. For some reason I was fearless with that one and I had it under control in 4 months from nearly fainting.

I remained fit, got on with my life, rejoined the band, got back into soccer, was almost completely well and fitter than ive ever been in my life. Decided to travel over to central america backpacking for four months - an awesome holiday full of bad foods, coffee, alcohol and a backpacker lifestyle. Felt great until I got back to singapore and then nearly fainted in the shopping centre. Flew back to home and then collapsed outside my house. Thus commenced my third and a pretty nasty relapse. Licorice didnt work, florinef did nothing, DHE did nothing - nothing seemed to work. I tried exercise and felt worse and bedridden for days. I tried butchers broom as a last resort and felt fantastic for two weeks - good as new. then it stopped working and for some reason that sent off my adrenalin system like a nightmare. I had a burning nerve feeling in my guts for two months after that all day every day. Weird feeling.

I finally went to a TCM guy and he gave me some herbs that got me from barely able to work to fully functioning again in four months. You beauty!

Just had another relapse recently after being under the most stress of my life - bloody annoying. This time I fainted a few times and I couldnt even drive or stand for more than 1 minute. it was terrible. Licorice tea and florinef for me out of the worst part, then mestinon and gradual exercise seem to be helping.

The most annoying thing for me is that relapses can start out of the blue in ten minutes from feeling well, but getting back to normal doesnt happen out of the blue!

[issie]

Rama, hate to hear how your life has unfolded and how POTS came into your life. But, one thing it does show - you have recovered from it in the past and it's encouraging to know that - because, it CAN and WILL happen again. It should give us all hopes for recovery. Especially, for those that it comes on out of the blue too.

Jon, I know you are very scared right now - but, you will get this figured out. Realize it may take awhile and you may have a lot of trial and error (we all have) but, some are very functioning and those are the ones that are no longer on this forum. Most of us here are either lifers or in relapse. When people get better, they don't come here that much. They are out living their lives. For us that are so chronic - this IS a good part of our lives. People relate to one another and we come here for understanding and also hopefully, some more wisdom to deal with this thing called "dysautonomia". Hang In There - it's just a little hick-up in your life and hopefully, it will pass soon.

Issie

[JRC09]

Wow, this really is the craziest syndrome/disease I have ever heard of. It looks like I have a tough road ahead of me. I pushed it yesterday to fight through, felt ok but after exercising and walking a couple miles my sleep last night was horrible. Everytime I began to drift off I would get a surge of adrenaline and get tachy. Not sure what to do about that.

I want to stay away from meds, so I'm going to try the natural diet/herbs treatments.

I am very confused on what happens that makes us get these flares? My white blood cell count was very normal so I don't think my body is fighting itself...what makes us get better? Do the peripheral nerves just have to heal?

[jangle]

JRC, unfortunately both we and doctors don't know what causes POTS. There is some speculation about an autoimmune etiology and it would make sense since for a lot of us our symptoms are worse during the daytime, the syndrome seems to strike those after stress, infection, or pregnancy and it seems to follow a wax/wane course. All typical features of an autoimmune disease.

However I don't know if it's actual damage to the autonomic nerves. It very well could be, or it could be a deficiency of neurotransmitters/hormones that the autonomic nerves need to function. Right now it is really unknown how exactly the dysfunction develops.

You're right in that this is a strange illness. A very strange one. I don't think I'll ever forget my experience with POTS for the rest of my life.

Hopefully your experience with it will be a short one.

[issie]

I want to stay away from meds, so I'm going to try the natural diet/herbs treatments.

I prefer this way myself. I didn't add any RX's until I was in my 40's - but, I'm a lifer - so, at that point in my life - what I had been doing naturally wasn't helping as much. I do believe if I hadn't supported myself with supplements and nutrition I wouldn't have done as well as I did all those years. Right this minute, I'm experimenting with some other supplements - that I haven't tried before and getting good sucess - so, It's looking real hopeful and encouraging for me. There will be a lot of trial and error with the supplements too. You can react just as severly with them as with traditional RX's and you have to be very careful what you do. You need to talk to someone who can take a look at your entire health picture. Herbs and supplements can be just as powerful - maybe, more so. I'll give you a for example - some of us are vasoconstricted others are vasodilated. If you take something that does one or the other - which is a good direction to take, by the way - and you go the wrong direction.......you will get a whole lot worse. There is a fine balance between over dilating and constricting. A lot of POTS has to do with blood flows and autoregulation. Hope you feel better soon.

Issie