Please Somebody Help Me

[JENNIFERL06]

I'M NEW TO THIS WEB SITE. I'M DESPERATE FOR SOME SORT OF HELP. I'M A 20 YR OLD COLLEGE STUDENT WHO HAS NO QUALITY OF LIFE WHATSOEVER BECAUSE OF POTS. I HAVE CHEST PAIN AND PALPITATIONS. MY HEART RATE GETS UP TO 200 BPM. I'M DIZZY, DEBILITATINGLY TIRED BUT HAVE INSOMNIA, I FAINT CONSTANTLY, MY FEET, LEGS AND HANDS HURT SO BAD IT MAKES ME CRY, I FREEZE, TREMBLE, AND HAVE CHILLS BUT WILL SWEAT CONSTANTLY. MY FEET OFTEN FEEL NUMB, I HURT ALL OVER, GET SO SICK WHEN I WAKE UP I THROW UP OFTEN,HAVE AN EXTREME LOSS IN APPETITE AT TIMES AND HAVE NO SEX DRIVE AT ALL ANYMORE. I CANT EVEN BEGIN TO KEEP MY BALANCE AND WILL FALL WHEN I CLOSE MY EYES. THE WORST IS THAT MY GRADES HAVE FALLEN AND CANT STUDY AND FEEL LIKE I HAVE HORRIBLE ADD AT ALL TIMES. I HAVE ALMOST EVERY SYMPTOM I THINK AT ONE TIME OR ANOTHER. CANT LIST THEM ALL. JUST NAME THE SYMTOM AND I HAVE IT.

I'M IN DECENT SHAPE AT 5'6 AND 135 POUNDS. I USED TO BE GREAT AT TRACK BUT CANT EVEN GO UP STAIRS WITHOUT GASPING FOR AIR.I STAY MOODY AND FEEL MISERABLE CONSTANTLY WHICH HAS GREATLY AFFECTED MY LIFE. I FELT SO BAD THAT I THOUGHT I WAS MAYBE DYING OR HAD SOMETHING HORRIBLE. WHEN I WENT TO THE DOCTOR I FOUND OUT AFTER HEART MONITORING AND A TILT TABLE TEST.

THIS ISNT ONLY AFFECTING THE WAY I FEEL BUT ALSO MY FUTURE. IF I DONT GET BETTER IN SOME WAY, I CANT START CLINICALS TO NURSE BECAUSE I'M SO SICK EARLY IN THE MORNING AND LITERALLY CANT FUNCTION THE WAY I NEED TO THOROUGHOUT THE DAY.

I'M ON BETAXOLOL AND TRIED METROPROLOL AND HAVE TRIED EVERY HERB OR VITAMIN KNOWN TO MAN. I'VE ALSO TRIED THE SALT WHICH JUST MAKES ME FEEL FAT AND BLOATED AND EXTRA EXERCISE WHICH OFTEN MAKES ME FEEL WORSE.

I DONT KNOW WHY IT STARTED. I THINK IT MIGHT HAVE BEEN MONO FROM ABOUT 3 OR 4 YEARS AGO. I HOPE SOMEONE ELSE IN THIS FORUM SUFFERS THE WAY THAT I DO. I NEED HELP AND ADVISE. IF ANYONE CAN SUGGEST ANYTHING AT ALL WITH HELPING SYMPTOMS AND PAIN PLEASE SEND TO ME. ESPECIALLY IF YOU'RE YOUNGER.

[corina]

hi jennifer,

welcome at the forum. i am sorry that you have reason to be here but am glad that you found this very supportive site, where we all understand this disease.

i am sorry that you are struggling so much and that you feel so bad. did you read the what helps section? tha tmight give you some good advices (if you haven't already tried them yourselves!). also there is a "what to avoid"section which maybe helpful as well. as for me it is around 9 am, i'm not up to good advices yet . it's just that i read your post and wanted to let you know that you're not alone and people are out there to help you!

corina

[AJVDK]

Welcome to the Forum. I am sorry to hear about how you are feeling. I can understand where you are coming from. My life has changes so much due to POTS. I know is not fair, ans some days its very easy to get down. I been there, and fight it daily. I am 27 years old. I had to quit working 6 months ago as I was now longer able to keep up. My life went from working 50- 60 hours a week, I even worked on the roads some, so I was flying all over. I had my dream job, and I had to give it all up. I now am mostly house bound. I am in a wheel chair on bad days, and when I leave the house as I am unable to walk very far with out feeling like I am going to passout. Since I stopped working my health has gone down hill fast. I think the hardest part for me was I use to fight myself everyday- what I mean is I hated who I became so I would try to fight to do things, which I made myself sicked half the time. I get down alot on all the things I can't do, I think its hard not to. I am learning to cope with my illness with the help of my doctor, and a good therapit to vent too. ( I turly beleive you need to do this)

I am now learing to live life at my own pace. I am learning I am never going to have my old life back, but I can learn to live my new live to the fullest. One thing that helped me when I was new was to learn more about pots. Here is some information I found usefull:

Here is some personal stories about hope, and person figths to deal with POTS and Dysautonmia:

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

This is a list of treatments that help in treating POTS

http://dinet.org/what_helps.htm

I am not sure if any of this will help, but I wanted to drop a line and let you know many of us know where you are at. And thats what all of us are here for. DINET is the one place I can share my feeling and know that others understand.

I wish you the best!

[corina]

oh jennifer,

now that i'm getting dressed, i remember that i really can't do without my compression hose. i'm less dizzy while wearing them and i often have less brain fog. hope this will help you!

corina

[Guest dionna]

jennifer-

we all know what you are going through here on the forum and best of all we are open 24 hours/ 7 days a week and even on the holidays! every POTS patient is different and has different symptoms just like everyday you yourself experience different symptoms. we all hurt and we have all cried. we have all lost things, our independence, and our quality of life. climbing stairs: i can't either and i was a marine. i ran 3 miles in 21 minutes. i was one of the few female marines that scored atleast a 295/300 on our physical fitness test. i did that june 2004 and i began passing out august 2 2004. i would run up to 10 or 15 miles a day even when i first started my fainting. i found out very quickly to stop even trying when i couldn't even make it 1/2 a mile with out passing out on the road and rolling to where ever. i have passed out a few times on the stairs so i avoid them whenever possible or i crawl up them very slowly. you know what... actually i am just going to PM you and tell you about my life and my story. maybe it will help you and give you some hope. i hope you like to read, i certainly like writing and you seem to need help.

dionna

[Guest CyberPixie]

I was like you are at my worst when it first started and even worse. I too thought I would die.

Drink loads, make sure you're getting enough potassium (does wonders for some people, including myself), try relaxation/hypnotherapy CD's to ease any anxiety which can be common when you're suffering so much, it really can help. You must up your salt, yes it makes us bloated but it's a fair price to pay for feeling better.

I'm sure you'll get even more tips from others here. Hang in there, it can improve.

[Guest malosp]

Hi there,

Sorry, that you are feeling the way you do. You sound just like me when I came to this forum the first time. Scared, feeling terrible, wondering what I had. Sounds like you don't know what you have. Your looking for answers.

Again, I think anyone that presents with the symptoms you talk about should at least investigate whether or not they have lyme. The deer tick is so small, you may not even notice that you got bit.

And truly who really knows what else spreads lyme....black flys, misquitos or wood ticks ...we don't know? I just read yesterday that they found a case of Rocky Mountain Spotted Fever (caused by tick bites) on the East Coast. Rocky Mountain Spotted fever caused by ticks is only suposed to be out west. Things are changing and I think it will come out that lyme is spread by more then the deer tick.

The tests for lyme are not accurate a lot of the time. In addition, not everyone gets a bullseye rash at the site of the tick bite. Anyone that has pets that go outdoors, or if you go outdoors, you are susceptible.

I too, thought mono was causing my dysautomnia but it wasn't. I have lyme and it took 3 tests to finally become positive. Because my originial tests were negative I made the mistake of thinking I couldn't possibly have lyme but that was not true. The CDC says that lyme should be diagnosed by symptoms and not purely on the blood tests.

Symptoms of lyme: sweats, chills, palpatations, fast heart rate, muscle aches, stabbing pain, shortness of breath, insomnia, anxiety, depression, brain fog, and tingling and numbness comes later.

Starts out like mono type symptoms like swollen glands, earache, sore throat...quite often with flu like symptom that then seems to go away...and then the other symptoms start several months later. Quite often younger people get diagnosed with mono.

And lyme appears to cause some type of dysautomnia or central nervous dysfunction. Typically heart tests come back normal even though you seem to have a lot of heart related issues.

All I know is that not all my symptoms of ANS are better but they are improved since starting treatment. I don't have the chest pain anymore, the palps come and go but are not as bad.

I am not a doctor and I don't know if you have lyme. But again, I wish someone would have put the bug in my ear earlier so that I would have had more info.

Wish you luck

[UnicornIsis]

May I suggest taking a semster off OR taking less classes during the semester. Right now you need to concentrate on getting medication straightened out and trying to get some kind of quality of life better.

I took a semester off and it really helped me. I haven't been able to go back full time and have only been able to take one, 1-night a week, class a semester since, but that's better than trying to take a full load and not being able to do ANY of it.

Right now you need to focus on your health. If you don't get your health straightened out first, you won't be able to do any classes or clinicals while you're sick, or at least you'll have a lot more trouble. From what it sounds like as bad as your symptoms are, if you don't get them under some kind of control you won't be able to do any classes or clinicals or you'll definatly fail them. That's not what you're working towards. So I'd suggest take some time off, either a semester of just less classes for the semester and get yourself a good doctor.

UnicornIsis

[mom4cem]

Welcome, you will find much support here.

It is tough to feel so bad and try to complete school, work just life in general. I hope that you are under good care or at least have someone who is able and willing to work with you. Do you?

Is there some way you can do online courses to continue with college. Something to lessen the burden.

Sending big hugs your way.

[Dizzy Dame]

I'm a college student too, and was diagnosed last year when I began to experience the exact same symptoms you have. I was terrified, wondering if I was going to die, or be bedridden for the rest of my life. I ended up dropping all but two of my classes that semester, and the two I did keep, the professors allowed me to do all my work from home so I didn't have to come to campus. I was essentially bedridden for the first 6 months. This was mostly due to the fact that I didn't want to admit how sick I really was, and kept trying to do "normal" things like walk outside in the heat, run around, not drink enough fluids or eat enought salt.

What I'd reccomend is to "reboot" your life. Try taking a semester off and re-learn what you can do and can't do for your health. A few things that are very important are high salt, high fluids, compression hose, and learning little tricks to keep you from having to walk very far. For instance, I always go through the drive-through at my bank so I don't have to go inside and stand in line. Or, I've found doctors who work in buildings with valet parking, or are on the 1st or 2nd floor. I never take the stairs, and I'm not afraid to use my wheelchair if I need to (however embarassing it is). With medications, and being kind to my body, I've improved a great deal.

I hope you find some relief soon

Hugs,

Lauren

[yogini]

Hi there. I am sorry you're going through such a tough time, and I can certainly relate. IT is so tough when you're in that place where you don't know where to go. I agree with the others that taking a semester off might not be a bad idea. Also, do you have a good POTS doctor? You mentioned that you take beta blockers and have tried herbs, but there are tons of other prescription meds that help POTS. They are worth trying out. The DINET main page has more info on meds and doctors.

In terms of salt making you bloated, I used to be a twig and I have gained 15 lbs since getting POTS. It *****! But I think the extra weight has made me feel better, and if I can function bettter, then it's worth it to me.

The good news is that if you got POTS after a virus, you have a good chance of recovery, maybe even total recovery. I think the trick is to get started on the right treatment plan and things can start to get better from there.

-Rita