Developing Other Symptoms/conditions Over Time

[Guest danielvasel]

i see that most of people here have lots of other "diseases", or "conditions"(related to POTS)

i actually can?t help myself not to be sad and emotional about it.... i?m not just talking about for me... there are some really sad cases in here...

POTS is no ordinary disease... and yet, most of people(including doctors) don?t acknolewdge that... anyways, this is all messes up...

i?ve only had POTS for a couple of months now...

and i only have a "few"(if compared to most of people in this forum) symptoms/conditions(insomnia, CFS, diarrhea/constipation, purple toes, orthostatic tachycardia, bradycardia)

and I must have some others that i don?t even know about(like hypovolemia for example)

did you gals/guys have all of your symptoms/conditions in the first weeks after the onset of pots?

im asking that because im afraid that things will get worse, that ill develop others symptoms(like fainting, migraines , etc, etc, etc.....)

what can you tell me about it?(from your own experience and from what you know about the disease)

please be honest with me, i don?t mind receiving bad news, i prefer to be aware of what?s to come...

in fact, what bothers me more is this uncertainty

: will I have it my whole life? will it disapper tomorrow? will it last for months/years/decades and then disapper? will it get better? will it get worse? and so on.... Im probally gonna end up asking a gypsy woman to read my hands

so thanks for "listening", and if you have something to say, please don?t hesitate

take care you all

daniel

[AJVDK]

Daniel,

I wanted to drop aline and say hello. I am sorry you have been down about what others and yourself have to go though having POTS. I can say there are days that I get down, and there are the day that I can do things. Everyone is different some are working with little changes and others are fullyunable to do anything. The problem is it hard to say, as so many people have POTS with other things like Lymes, MS, NSC, PAF, EDS, and the list can go on.

On thing that has helped me is reading more about POTS, and the differnt forms of POTS.

Here is a artical by Dr. Grubb-

http://www.medscape.com/viewarticle/522421

Quality of life in patients with postural tachycardia syndrome

http://www.mayoclinicproceedings.com/Abstr...stract&UID=

Hope this help some! Keep your head up!

Amy

[Tanzanite]

I just wrote a long paragragh and it disappeared ARGH! Bascially I was so ill last year I thought I'd die, I've gradually got better thanks to my own doing but while some symptoms are less or completely gone, I've developed others.

I'm still stuck in bed and not able to do much but it doesn't stop me trying!

[Guest dionna]

the first time i felt sick... was August 2, 2004 at ammo school. i had just got finished running a few miles and we were at a promotion ceremony in front of the barracks in Alabama. i started feeling really funny, dizzy, lightheaded, very nauseated, sweating a lot, pale and flushed alternating, and other crazy stuff. then just before we were given the command to fall out of formation--- i literally fell out! that was the first time i had ever passed out. every body tried to pick me up as i was coming to and i fainted again, so they just let me lay there and my SSGT picked me up and carried me into the air conditioned building and gave me some water. people pass out in formations a lot. they lock there knees out or whatever. it was hot and very humid that morning and like i said i had just got done running. we figured i was just dehydrated or i had locked my knees out. i didn't even go to the doctor. the rest of the day was very normal. a few days later i was at the gym lifting weights and my GYSGT looked and me and asked, "hey devil dog, are you alright?". i said, "yes gunny!" and i passed out again. when i woke up they had called the ambulance. honestly i thought i was just fine! i knew i was hot all of a sudden but i was at the gym and before i went into the weight room i had been running suicides and wid sprints on the basketball court--- i figured that is all it was. i was a really fast runner. 6 minutes to run 1 mile --- 21 minutes to run 3 miles. i was the quickest female at boot camp and at ammo school. as i said again about the deconditioned--- no! i was never told that! i beat most of the males too. anyway... back to the GYSGT asking if i was okay... apparently i had turned really pale and that is why he asked me. the ambulance came to get me and they took me to the Basic Aid Station. they looked at me and said i was fine. if it happened again to just come back. the following week, i was running the 3 mile course we always ran for our Physical Fitness Test. i was beating everyone except one male. he gets an 18 minute 3 mile. he was a rabbit! so i was running along and i felt really lightheaded and everything started cramping up just out of no where! so much pain. i decided to slow up and let it pass then i would just speed up later. NO! i woke up laying in the ditch all scratched and torn up. they said i had been out about 8 minutes and i had hit my head pretty good. so they sat me up and i fainted again. every time i was moved for about a half hour to an hour... i fainted. so they took me back to the barracks and my room mates undressed me and were helping me put my cammies on--- as i continued to faint. i even fell head first off my rack into the concrete floor. i woke up histerically laughing. you should have seen the girls! half naked going biserk and all scared. so they finished getting dressed and got my SGT to carry me to the duty van to take me to the BAS again. there i kept on fainting so they called the ambulance to carry me to the hospital out in town (Huntsville Main, Huntsville, AL). i stayed there for 3 days and they found nothing. i kept fainting at ammo school but then i went on to Camp Lejeune. that is when the migraines came. every single day! i started getting numb everywhere, more nauseated, that electricity feeling, more flushing and paleness, stomach cramps, chest pain, and all kinds of stuff but it was all gradual. every month i had a new symptom and of course i went to the ER just to have it documented (disability purposes for when i got discharged). i still went to work most days. okay everyday except when i was bed ridden for 2 months. i still went to work most of those days but i slept on my 1stSGT's couch. eventually i was sent permanetly to NNMC where i stayed for 8 months (until my discharge) and i went to all my appointments and finally had my diagnose after a year and a halfs time. since discharge on March 31, 2006--- i have started to have a lot more stomach problems, possible IBS, painful female ordeal, more sore muscles and knots, more clicking and popping of my joints, my knees kill me, i've become more lazy- drained, weak, moody but not so much a negative attitude necessarily, i've lost more hope but i know that is just another phase and i will get back happy with it, more intense migraines, ummm and oh yeah... allergies to things i was never allergic to before. plus other things but i can't remember.

i'm sorry to rank on... i'm bored and since you have insomnia... perhaps reading this made you sleepy? i don't know. it a long story, huh?

to answer your question briefly... yes, mine was gradual. i had no signs or symptoms before the first time i fainted. NONE. i didn't even think anything was wrong with me until the day i passed out about 20 times. the 3 mile run day described above. i kept hoping that it would just disappear just as it came but it hasn't happened yet. the marine corps has a lot of mottos. two are in my signature. "semper fidelis": always faithful and "adapt and over come"... POTS i just have to get use to it. adapt to it and i will over come.

i am a very positve, perky, and bubbly person. i always smile that is why i always leave one behind my name. i know that the condition can get worse... it has proven that time after time but i am still optimistic that i will be able to deal with it. i got my man supporting me. i wish you luck and i hope that some day you will find someone to support you as well no matter if your condition gets worse or not.

dionna

[cmtaylor5]

Hi, Daniel,

My onset of POTS was very gradual. I know I have had symptoms at least since my last pregnancy (8 years ago). It didn't get bad enought to seek treatment until 2 years ago. It took me about 1 year to get diagnosed.

To answer your question, all of the things that were "wrong" with me and are listed as my diagnoses all happened before I was diagnosed with POTS. Some I had for years, but most came on when my POTS got bad enough that I had to seek medical help. I had no idea that all of my symptoms were the result of the same illness.

I have not had any new symptoms since I have been diagnosed and gotten treatment. Some of the thngs like the breathing problems, and vision problems don't happen to me anymore or are very rare occurrences. All of my symptoms have been drastically reduced since I got the proper medication.

When I was diagnosed, my doctor told me that for some[/i people, once they find a treatment that is effective, even if they need to take medication for the rest of their lives, the disease will not get any worse. I now live an almost entirely normal life. There are some things I have had to accept that I cannot do anymore, like running.

You probably already know by now that you have the best chance for a full recovery if you had a sudden onset of symptoms. You are doing the right thing by trying to find out as much as you can. I think you should be hopeful that you will improve. I am in quite a different place than I was last year at this time. Before medication, I was really, really compromised.

I think most of us with this disorder have come to realize that we can't look too far into the future. Nobody really knows enough to give us an accurate prognosis. For me, this was very hard to accept at first. It took time. However, most days now, I can live with that and I feel better since I have come to terms with that fact. Continue to educate yourself and experiment with the ideas that you will be given from other board members. The people here can help you learn a lot! I'm confident that you'll find the coping skills you'll need to make it through!

Best of Luck,

Carolyn

[kmpower]

Hi Daniel,

You are doing yourself a great service by learning as much as quickly as you can. I am enjoying your questions.

My stuff started suddenly and my symptoms have changed. As someone with a charmed health life for many decades to suddenly become sick, spend lots of time at ER, be told I was just anxious, laughed and scoffed at, the first symptoms were complicated by the fear of doctors, the fear of the symptoms, and the fear of the treatments. Most of that is gone now because I have gone through the worst of it and know more about what is going on with me. Knowledge does much to remove fear symptoms.

Then the drugs can give symptoms while they take others away. So there is a learning process with that. Everyone here has stories about what works and doesn't work for them, and how they learned about it. As I learned about my own pulse and BP I could tell what really helped the important symptoms. What works for me is probably not what will be right for you. Some of my scariest orthostatic symptoms were caused by the BB given to control the tachy and getting the right dose was critical for me (and it took a loooooooooooooooooooong time to convince the doctors, I might add!)

So I am better and lots of that is that I have gotten past the not-knowing and drugs-making-worse stages. I know what I need to work on, lifestyle-wise, so I can be with my limitations and still be as much in control as I can. Like you, I am fortunate not to have to deal with some of the problems others here have, but still for me, being old, I am less able to tolerate changes.

Keep asking questions. And pay close attention to your own body and learn what it needs.

OLL

[Guest danielvasel]

You are doing yourself a great service by learning as much as quickly as you can. I am enjoying your questions.

yeah, POTS is a priority for me right now... i can?t do anything without thinking about it

As someone with a charmed health life for many decades to suddenly become sick, spend lots of time at ER, be told I was just anxious, laughed and scoffed at,

i can?t even imagine how hard you must have had it... i was kind of laughed at too by a doctor, even though it was his obligation to know at least a little about POTS.... but for me, it?s "easy" to find a specialist, as POTS is already considered a real condition/syndrom/disease....that wasn?t the case for ya.... so i must say that something is terribly wrong with the medical system, if they don?t know a disease, they just laugh or ignore ya...

Keep asking questions

you betcha!!

thanks for the answer...

daniel

[Dizzy Dame]

Daniel,

Alot of your questions are going to be impossible for us to answer. There's no way for us to know if your symptoms are going to progress or if you'll ever get better. To answer these questions, you'll have to continue the road you've been on, going to doctors and knocking on doors until you start to get the answers you need.

I've been sick for 5 years, but my illness became very bad about a year ago. Despite being very, very agressive in trying to get a real diagnosis and treatment, I'm still searching for answers. It took me 3 months of being bed-ridden to get the autonomic disfunction diagnosis, another 3 months to get a work-up at Vandy and be diagnosed with Hyperadregenic POTS, and another 6 months to get to a decent neurologist to explore my other strange symptoms. I've now been very sick for 1 year and still don't know what's causing my POTS, and if I'm going to get worse or better. Even after I get my underlying diagnosis, I still won't know if I'm going to get better...

What I'm trying to say is that only time, and an agressive pursuit of answers are going to give you a good picture of what's happening. But keep fighting as hard as you can! If you refuse to give up, eventually you'll get the answers you want.

Cheers,

Lauren

[bttrflyamby1981]

I have yet to be dx with POTS. My Doc said he thought I had it, but have not had the results yet.

I do have IBS, Migraines, And Tachycardia...I have many symptoms along with all this, but for the most part even though I feel as if things are getting worse, I don't think they are.

We are all so different though, like our fingerprints.

I first was dx with IBS at age 14, I then started getting migraines at age 19, they were pretty mild at first but now I get them all the time. The tachycardia started at age 22 (that I know of). While I know there is more to it then all this, my doctors are puzzled by me.

I hope this helps...........

Amber

[MomtoGiuliana]

Daniel

As you'll see on this board there is a range of severity among patients. Some of us have pretty mild symptoms most days while others are very disabled. POTS is not considered a "progressive" illness. It is generally a chronic condition, that can vary in intensity and range of symptoms from person to person and from day to day. According to my specialist, most people with POTS recover to a functional level with appropriate treatment. The average length of time to "recovery", according to him, and to published research, is 4 years.

In 2002/2003 I was bedridden with POTS. Today I am highly functional on minimal medication.

Everyone with POTS has a slightly different story. There is more than one cause and it is a complicated and poorly understood condition that is often complicated by other concurrent conditions (as you noted)--so there is no crystal ball.

A positive outlook/hope/belief you will improve is important to recovery from any illness. You have every reason to expect that you will improve over time--statistics are on your side.

Take care,

Katherine