nikigrl8883 Posted October 19, 2006 Report Share Posted October 19, 2006 well after 6 months of torture going from doctor to doctor with no answers i finally saw a neurologist who gave me a tilt table test and sure enough i have pots syndrome... i am so discouraged because theres no cure for this i am sick every single day and have been since the last week in april...these are my smptoms from the begining some are still here some arent some are new sighhhhhh....the obvious elevated heart rate from laying to standing...nausea tired all the time weakness feeling like i have a lump in my throat all the time dizzyness lightheadedness like all day long cold sweats when moving around pains here and there/ the ist night i knew somthing was wrong i woke up with my right arm completly numb i thought i had a stroke every since then ive been sick...ive had tons of tests mris ct scans eeg ekgs echocardiogram blood work a transcranial doppler tilt table test stress test the only thing i didnt pass so far is the tilt table test...and yes everyone said it was anxiety at ist no one bleived me especially becasue im only 23...but i know my body and i knew somthing was horribly wrong i was a manger of a beauty store now i cant work at all i can barely do anything its that bad...some days are worse than others of course but i never ever feel good so to speak...... i even went to an endocrineologist to have my hormones tested in depth,,, the only thing i found out was i had a slighty elevated prolactin level so then of course it was suspected i have a pituitary tumor i had to have a special mri of that gland... they found it was borderline slighty enlarged but barely there was no evidence of a tumor at all and all the doctors said that wasnt what was casuing the pots unless it was my hormones which all my other hormones were int he normal range besides the prolactin one so i am taking a pill for that too ive had pelvic pain and period changes for a long time ive had ultra sounds and every few months i get an ovarian cyst that goes away then one will come back so i have to take birthcontrol pills now too! so now i take atenaol once a day for the heart rate thing and yasmin and also bromocriptine which i know cab make pots worse but i have to take it anyway its hard to tell whats the root cause of my pots as im sure u all know! all i know is everyone at my work was sick with a virus right before i got sick and i caught a cold soon after next thing i know im like this ///the first time i went to the doctor my blood ssugar was 35! i was tested of course for diabetes and i dont have it ever since then ive been taking my blood sugar daily and its always normal so i dont know.....help me! dpes anyone ever get better from pots!? i also read people can die from it in ten yrs! Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted October 19, 2006 Report Share Posted October 19, 2006 Hi Nickigirl,You sound exactly like I did a year ago...same symptoms, same strange aches and pains...same everything. I'm so sorry you're going through all of this! I'm sure at times you felt/feel like you're going to die, but fortunately POTS is not fatal (but it can make you so miserable, you may wish it was ). Have you thought about going to see a POTS specialist? There are several universities and private physicians who specialize in autonomic dysfunction and autonomic failure. POTS is technically classified as autonomic dysfucntion (just to let you know). Also, have your doctors ruled out/looked into some of the "common" causes for POTS? Some of these include EDS, Lupus and other auntoimmune diseases, Diabetic neuropathy, Lyme disease, or an injury to the spinal chord. If not, that may be a good place to start. Many here on the forum have personal experience in these differnt areas.Anyways, welcome to the forum and I hope you find many answers and friends while you're here Quote Link to comment Share on other sites More sharing options...
kholdefer Posted October 19, 2006 Report Share Posted October 19, 2006 I'm so sorry you are having such a hard time. Going undiagnosed is really hard. It took me about seven months. How are you being treated for POTS? I was diagnosed in January, and have been taking Midodrine, upping my salt, and doing a bunch of physical therapy. I swim, try to walk, and do pilates. At first I could only do one lap in the pool I was so weak, but until recently I have been feeling almost 50% of my normal self, which is a lot better! I am going through something new, or maybe a flare up though now. However, I did feel better for a while. I'm only 24, so I know how hard it is to not work, not start a family, not go out with friends, ect. It feels like you're behind in life. But you have to hang in there and find small things to make you happy. A little after I got sick I adopted a disabled cat. She has made me feel whole again, makes me feel useful. Also, its hard to explain to people how you feel; I tell them its like I'm really hung over, but I didn't drink the night before. That is the best I can explain it and I think its helps people understand. Hang in there. Quote Link to comment Share on other sites More sharing options...
nikigrl8883 Posted October 19, 2006 Author Report Share Posted October 19, 2006 thank you for your replies and to answer you yes i have been tested for lyme disease twice and lupus i dont know about the spinal thing i havent had an mri of the spine yet i have been to neurolgists and had basic neuroligical exam and passed everytime i did have someone come up behind me without me knowing lift me up and cracked my back later that night i was in awful pain and was in pain for a few weeks but not bad enough to have me not do anything or go to the hosptial so i didnt think that was related that happened about a month before i got sick as well...ive mentioned that to my neuroligists and they dont think it has to do with the pots but who the heck knows at this point i mean i pass all the blood work and theyve done alot no brain tumors no blockages int he heart i mean could a regualr virus get into the blood and casue pots ? becasue alot of the people at work were sick with a virus....i am going nuts here i feel like im dying yes! and i feel like my life is over ...how do u find out if you have shy drager syndrome whats the differne between that and pots? i actually went to the doctor today my cardiologist and asked him how i was to find out whats casuing the pots, and he said once the major things are ruled out its very difficult to tell and i may never what what caused it:( i mean if its somthing i can fix i want too geez..........its been 5 months almost 6o by the way i dont have diabetes either and whats EDS?i almost forgot as far as my treatment all it is for pots right now is atenolol cut in half once a day and the other stuff like drinlking alot of water Quote Link to comment Share on other sites More sharing options...
masumeh Posted October 19, 2006 Report Share Posted October 19, 2006 It DOES get better. And then it gets worse... better.... worse... better... worse... This is one of the frutrations of POTS, the ups and downs. But, I think for most people, it gets better overall... At least, for me, after the first year or so, it started to become steadily better. One reason is learning coping strategies and consistently applying them (i.e. after reclining, gettting up in a slow, step-by-step process, sit for a few minutes before standing; don't ware yourself out emotionallyor physically; drink lots of water and salty foods w/potassium; if you have IBS or allergies, manage that dietarily; etc.). Your youth at onset is not uncommon; it usually starts before age 35. I was 20, now 25. Good luck! Try to stay calm and relax....it's upsetting, naturally, but it's not the worst thing to happen to a person, and your health has a better chance if you can manage to avoid becoming depressed. I was really depressed in the beginning (I had just lost my first pregnancy, had to drop out of college due to fainting and fatigue, had a big ongoing conflict w/my dad, and didn't know where the health problems were coming from). It's really great that you found out about POTS so early. I suffered for more than 4 years with a "mystery" illness, and now I'm so glad to finally know. Believe in yourself! You CAN get better....and even at the moment, pluses probably still outweight minuses... right? Just give yourself enough rest, staying as active (and I believe upright, physically sitting if possible instead of laying down all the time, bedrest means bp will drop even for a healthy person) as you can tolerate w/out getting fatigued. Keep your friends around you if you can...mine seemed all too busy to drop by, but I think it was partly because I was too proud to scream help...too proud to have them over when I was too tired to clean, cook or hostess. Just make do....it really helps to accept limitations and make do. That's my current philosophy anyway, and it seems to help me. An old friend of my mother gave me good advice at my baby shower, because it's hard to care for an infant, sometimes in the middle of the night the diaper duty, the projectile vomiting (that lands on you:), the crying, etc.. She said, "Learn the phrase, 'This too shall pass.'" That has helped me with POTS too.. just pure unadulterated patience. Again, hope your condition improves soon! Quote Link to comment Share on other sites More sharing options...
dawn Posted October 19, 2006 Report Share Posted October 19, 2006 Hold on to your opitimism because I have heard that the viral onset cases of POTS often improve or go away in 2 years. It hits you hard at first but just continue one step at a time. When I was young, lower body strengthening exercises helped me alot. Mayo clinic really stressed the importance of getting strong leg muscles to minimize the pooling in our legs. I was really sick when I was first diagnosed in my mid 30's then had about 10 good years. I am now disabled at age 50. I have never heard of dying in 10 years. Dr. Low at Mayo said I would probably out live him.Take it one day at a time, some days will be worse than others but, don't give up hope.God BlessDawn Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted October 19, 2006 Report Share Posted October 19, 2006 As far as dying in 10 years, I believe you may have been reading about Shy-Drager which is a different condition of the autonomic nervous system that is progressive. This is very rare, and it is unlikely that you have it.Katherine Quote Link to comment Share on other sites More sharing options...
bttrflyamby1981 Posted October 19, 2006 Report Share Posted October 19, 2006 Welcome!I'm still waiting for the diagnoses, but have been dealing with symptoms for 3 years. Hang in there, it will get better. Most have ups and downs, but the viral induced POTS can be a good thing. Fingers crossed for you,Amber Quote Link to comment Share on other sites More sharing options...
wareagle Posted October 19, 2006 Report Share Posted October 19, 2006 Welcome to the board..I know things are overwhelming right now but you will fing lots of support here. I would urge you to look at DINET's main web page as it has tons of answers to all of your questions...(ie. causes of POTS, EDS, post viral infection..etc). Quote Link to comment Share on other sites More sharing options...
Guest dionna Posted October 20, 2006 Report Share Posted October 20, 2006 welcome to the forum. we all understand the roller coaster you have been on. i wish you more good days than bad. good luck with treatments and doc appointments. feel free to post anytime you have any concerns or are looking for advice. some one here is sure to know exactly how to answer any question you may have. take care!dionna Quote Link to comment Share on other sites More sharing options...
corina Posted October 21, 2006 Report Share Posted October 21, 2006 hi niki,as i saw your other topic first, i welcomed you there and asked you some unecessary questions!!!so, welcome again, hope we all can give you answers to your questions!corina Quote Link to comment Share on other sites More sharing options...
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