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Old 09-15-2006, 02:05 PM   #1
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Thumbs down i have POTS! no explantion

i just want everyone to know i have POTS its been diagnosed i passed all the other tests except the part where they lay me down and stand me up my heart rate changes too much ....i asked him what is going on and he said he looked at my mri and its barely enlrged and theres no mass of a tumor he also showed it to another radiologist and they also said the same thing....so he said he didnt think that was its cause,,,,he said the only thing it could be was hormones off besideds my autonomic nervous system... which i told you i saw an endocrinologist already and supposedly all my hormones were ok except the prolactin .....i dont know what to do! this is horrible theres like ten thousand thing that can cause pots...and ive already had alot of testing...i dont know what else they can do....my life is over

 
Old 09-15-2006, 04:22 PM   #2
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Re: i have POTS! no explantion

Did the doctor actually SAY you had POTS? I don't see that in your message.

Your life is not over, Nicki. If you have this, there is medication (and other things) that you can do.

 
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Old 09-15-2006, 04:35 PM   #3
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Unhappy Re: i have POTS! no explantion

yes the doctor actually said i do have POTS without a doubt

 
Old 09-15-2006, 06:19 PM   #4
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Re: i have POTS! no explantion

I'm sorry to hear that. I don't know anything about what it is besides it is a major increase in heart rate when standing. After reading that I become curious what is described as a 'high' heart rate because I know when I was having my anxiety attacks mine could go from around 60 (when watching tv or something) up to 80 from standing up and get up to 90. I figured it was just because I was thinking about it and anxiety. Ever since I stopped having signs of anxiety I haven't noticed it though.

Also what are some other symptoms of it? One other thing to think about is do they just test where you just stand up and measure your heart rate? If so I'd be nervous and would expect a high heart rate. Sorry to hijack your thread and my ignorance but you made me curious.

 
Old 09-15-2006, 06:48 PM   #5
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Re: i have POTS! no explantion

for anyone whos curious ill tell you what was done they lay you down flat on a table and montior your blood pressure and heart rate for awile then they strap you into the table so you cant fall out....they stand it up and then montior your heart rate and blood pressure again for 10 mins thats how they tell if you have POTS if your heart rate goes up alot when they stand you up you have POTS they are numerous reasons that you can have it....tons...ive already had alot of testing though to rule out major things so who the hell knows why i have it theres alot of symptoms to it lightheadeness dizzyness chest pain headaches racing heart drops in bp up and down bp tiredness anxiety tremors and more......basically there somthing wrong with the autonomic nervous system POTS is a collection of symptoms and not an actual disease in itself

 
Old 09-16-2006, 04:11 AM   #6
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Re: i have POTS! no explantion

Well, Honestly I know you have been having bad 'anxiety' attacks but maybe this could be what is causing what you think are 'anxiety' attacks. You have said you are lighthead all the time before. Well, Maybe these are giving you the initial symptoms and just worrying about them put you into an anxiety attack. Once you get it treated (I'm not sure of how) you could be free of all the symptoms or at the worst the symptoms won't be as severe. Maybe there is light at the end of the tunnel?

 
Old 09-16-2006, 08:27 AM   #7
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Smile Re: i have POTS! no explantion

Hi Nikigrl,
I am so happy to hear you are finally getting answers!
The good news is that Postural Tachycardia syndrome also know as POTS is treatable and not life threatening.. POTS is not in anyway thought to progress to cardiac disease. I have researched POTS for my own interest and have learned a few things I thought I might share with you. I will try and explain Pots to you as best as I can.
The Autonomic Nervous System as you know is the so called "master" of organ function throughout our bodies, what this means is it involves control of our heart rate, blood pressure, body temperature, breathing, and even our digestive system. When we have a condition called POTS it's just our bodies inability to make necessary adjustments to counteract gravity from a laying to standing position. Which in turn causes all the symptoms you have been experiencing... Anything from the most common Rapid heart rate ~ more than 30 beats per minute from laying down to standing position, or a heartbeat greater than 120 beats per minute after 10 minutes of standing, dizziness, nausea, fatigue, Hypertension (high Blood Pressure), symptoms of "ANXIETY"... That being said, now you ask what causes pots?
Pots can be caused from anything as minor as viral and bacterial infections, inflammation, Chronic fatigue syndrome, it can be genetically inherited, as well as diabetes, and peripheral nerve damage, among other conditions.
Okay so how is pots treated, Well they say adding a high salt diet as well as lots and lots of fluid intake, I am guessing water, or gatarade, selective serotonin re uptake inhibitors also know as SSRI's, beta blockers, as well as drugs commonly known as Fludrocortisone and many others... So what I am saying to you is that there are "TREATMENTS" out there for this condition..
I am sure you Doctor's will find the one that is right for you. I think at this point you should be finding some peace of mind that you actually have a diagnosis and this diagnosis is very treatable. There are allot of people who have this disorder, and who are living normal lives. I feel the anxiety you are creating, is in-fact causing your symptoms to intensify.. You need to learn to relax and realize that you are not dying.. And once you are convinced of that you will see you anxiety level will drop, and you will start to feel allot better in this department. Your condition already causes inappropriate sinus tachycardia and on top of worrying all the time that you are dying this creates more tachycardia and other anxiety symptoms as well. So now you are dealing with two disorders!!! I am sure if your doctor thought you were in any danger of dying he or she would have had you in the office minutes after reading your test results.. You have to stop obsessing about death, I know that is hard I do it myself, and that's how I know first hand how it can actually destroy your quality of life, worrying all the time.. As we all know we are here on borrowed time anyway, we are all going to die someday that is just the reality of life, but obsessing about it day in and day out is not good for our mental as well as physical state of mind... The healthiest people die everyday in car accidents for example, that was their destiny, there is no good reasons for this and seems unfair, but we have only little control over what our "destiny" is going to be. So try as hard as you can to retrain your mind and stop obsessing over the fact that you are near death. You are young and hopefully have a lifetime of good health ahead of you. Focus on excepting what you have, research the best possible treatment, and try to live a normal healthy life to the fullest. Don't let life pass you by in fear.. I have spent years of fear and loss of quality of life from this, and at times that fear creeps up on me, but I have to keep reminding myself that I will over come whatever comes my way as best as I can, because I refuse to die or think I am dying at such a young age.. Try niki I know it's hard but you have come this far and haven't died yet! That's a positive thought..
Keep me posted and remember I am here to listen and give advice if you need it.. Your never alone when it comes to these thoughts.
Any thoughts Just let me know I am always here I hope this has helped ease your mind some... boxerlover

Last edited by boxerlover227; 09-16-2006 at 08:30 AM.

 
Old 09-16-2006, 09:30 AM   #8
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Re: i have POTS! no explantion

thanks boxer lover! i was researching on POTS myself and found out that dental work such as a root canal can cause it! i just had a root canal in february and the doc had a hard time with me becasue my roots are so long! i just called him and i am going to go see him soon to see if that could be the cause!i think it is becasue i slowly starting getting symtoms right after that and now look at me that may be what it is and if i can remove the tootha nd get better so be it! when i talked to him on the phone he was all nervous he was stuttering......he was like wll i have to see an ex ray of the tooth and do do some tests but he is gonna do em and that tooth does bother me at times my jaw near it .,,,,,maybe its as simple as that

 
Old 09-16-2006, 09:46 AM   #9
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Re: i have POTS! no explantion

i hope so nikki, get well soon .

 
Old 09-16-2006, 11:23 AM   #10
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Smile Re: i have POTS! no explantion

Good I am glad you are feeling a little better today! I know my wisdom teeth were a big factor to my tmj problem.. so I guess you never know.. I researches pots because it is very common problem after child birth because of blood loss.. And I had a baby so you never know! Okay keep my posted your in my prayers... boxerlover any questions let me know!

 
Old 09-16-2006, 02:02 PM   #11
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Re: i have POTS! no explantion

im so depressed about this i feel sick all the time and have tons of symptoms that i dont even know if pots explains im probably gonna die soon from somthing simple.......... maybe it is the root canal ...i dont think people understand how sick i am physically ...i feel like i have the flu all day everyday and i feel like i cant swallow like my throat is closedi was given a beta blocker i tried today and it help the heart rate thing so far but i still feel like hell i feel just as bad im too young for this im only 23 look up POTS and see how bad it is peoples lives are ruined and they cant even do anything...the key is to find out whats causing it,,,,i need to find out or ill never get better my next step is the dental thing

 
Old 09-16-2006, 04:05 PM   #12
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Re: i have POTS! no explantion

Niki I believe you will feel much better after you treat your POTS. Honestly (as I have said) I believe it could just be the POTS symptoms giving you the constant feeling and since anyone that has a brain would worry about it about having it for months which cause anxiety attacks.

Still if you keep going back to the doctors to find out more things you 'could' have will make you more nervous and keep making you think what if they missed something - I know the feeling. I went to the doctors after about 4\5 weeks with anxiety attacks and after he checked things I still didn't want to 'accept' that nothing was wrong with me. The symptoms were so real that I couldn't believe I kind of caused them myself.

I think you should limit yourself to go to the doctors only a few more times for tests then after that if they find nothing just accept it is probably just the POTS, anxiety, and anything else. If the doctors haven't found anything yet and don't soon then you have to accept they probably won't.

 
Old 09-16-2006, 04:25 PM   #13
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Smile Re: i have POTS! no explantion

Hi Nikigrl,
Beta blockers help treat anxiety disorders, panic disorders, social disorders as well as trembling, palpitations, rapid breathing, sweating, Lightheadedness, and rapid pulse, by slowing down the nervous system. I myself was prescribed toprol XL but after taking it I was soooo sluggish.. I felt like sleeping all the time, which is totally normal until your body adjusts to the medication, I did notice the heart rate change, I usually run a fast heart rate 90's and over 100, and on the beta blocker my heart rate was in the 60's. BIG difference. I felt very very relaxed, and calm.. beta blockers also blocks the harmful effects of stress hormone on your heart.
I had a baby so I was stopping all medication treatment until after birth. You said you started taking them and saw a difference in you heart rate this is a good thing. I can't stress to you enough to stop researching all the negative things related to POTS. You are going to make yourself sick and drive yourself into a depression.. I am going to tell you a little something about myself.. I was diagnosed 8 years ago with Lyme Disease. I spent 1 1/2 years in my PJ's laying in bed thinking I was dying.. I was only 25 years old at the time.. I watched the world go by through a window on a rocking chair curled up in a blanket.. I was so weak I couldn't stand without the help of a parent or friend. I couldn't go to the bathroom by myself, I couldn't brush my hair put on clothes because I was so sick, I had to have my parents feed me, brush my hair, help me in the shower that's how bad I was... At the time If I read all the horrible things and terrible outcomes that other people had with Lyme disease I swear I would have died of depression alone! Instead I researched all the positive things, all the good success in recovery stories, all the best treatments etc.. and I told myself I was not going to give up I was going to recover..The mind is a powerful thing, I have mentioned this so many times you can actually make yourself believe that you are dying of a serious illness just by your thinking..
I know you say you have been diagnosed with pots and just because "other people" have had no success doesn't mean that you are not going to have success.. People die of Lyme disease, If I only focused on that my recovery would have been that much longer.
I think you should try to distract your mind as much as possible, read a book not on illness either, take a nice relaxing bath, try to catch up on sleep to refresh your thinking, watch a good movie... something other than the thinking process of death.. You will see that your anxiety end of this will be that much less by distracting the negative thoughts.. I know you are only 23 and want to be out with your friends having fun. Think of all the things your going to "promises yourself you are going to do when you get better.. Think positive things to look forward to not the horrible symptoms that you are feeling.. You may be surprised that some of your symptoms may disappear.. If your friends don't understand and help you through this rough time then they weren't a friend from the start.. A real friend would come over pop popcorn and rent a good movie for yous to watch and take you mind off things, surround you around POSITIVE thoughts.. That's a real friend. I am saying this because I know in previous post you mention losing you Boyfriend throughout all this.... You know something I married the man that stuck by me through my illness with Lyme, because I knew he stood by me through a horrible 1 1/2 battle with Lyme and he never gave up on me.. and you know what if he could stand by me through that he'd stand by me through anything, besides for the fact it only made me love him more to see him care so much about me.. That's what you want in a relationship nikigrl not someone who doesn't understand or only thinks of himself...
Yes you were told you have Pots but some of what you are feeling is also anxiety related.. Anxiety can cause you throat to feel closed, anxiety can cause you to feel fatigued.. Until the words come out of your Doctor's mouth that you are never going to get better and there is no hope for you, Not a second till then should you be thinking you are dying!!!! You mentioned your wisdom teeth are they removed? I am not sure the relationship between pots and wisdom teeth but I guess anything is possible.. Have you been tested for chronic fatigue syndrome? I had this second to the Lyme and I had allot of flu like symptoms... It's something you may want to mention to your Doctor. I think an appointment with your regular GP for blood test should be made again.. Rule out Lyme, rule out anemia and other things that can be contributing to how you feel, so you can put your fears to rest!!!
I had to be tested several times before the Lyme even showed up in my blood... I never had a rash, never seen a tick I just got sick.. If I didn't get re~tested I would have never know.. But don't go researching every illness you may or may not have until you know for sure.. believe me this not a good thought process to have... I think if you start changing your way of thinking you may surprise yourself. I know I should live my life to my own words of advice and I myself need reassurance at times as well, but most people who suffer from some kind of anxiety disorder do need that reassurance.. And that is why I am here for you.. Until you tell me the doctor's said you are going to die, I am only going to constantly reassure you that you are going to be okay.. When you are feeling down or depressed think of me and I will help you to remember that you nikgrl are going to be just fine.. And you will see when this over you will be only that much stronger as a person from the inside!!! You have to learn to just accept what your diagnosis is going to be, give the medication time to work and stop battling with your own thoughts.. You can actually create more problems then good. I hope this helps you and remember it's okay to feel sad and it's okay to be frustrated but don't drown yourself in that depression.. acknowledge how you feel from your emotional end and not so much the physical. Acknowledge and accept what the Doctors are telling you instead of the constant questioning of their diagnosis.. I always say exceptance is the first step to recovery!
Any thoughts I am here Boxerlover

Last edited by boxerlover227; 09-16-2006 at 04:28 PM.

 
Old 09-16-2006, 04:52 PM   #14
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Re: i have POTS! no explantion

Remember, the people who are on the internet complaining they have no life because of POTS are in the minority! Other people with POTS go on about their lives just fine. It sucks, but it isn't dangerous and there are lots of very safe treatments and lifestyle modifications that can help. Take care, and you have a diagnosis, now you have to accept that you CAN live with it, and you can try your best to live well with it.

 
Old 09-16-2006, 05:00 PM   #15
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Re: i have POTS! no explantion

well i did have my wisdom teeth out but i was talking about the root canal i just had in february somtimes bacteria can get left in by accident and cause pots and that tooth still aches sometimes that could be a possiblitiy...i already know i dont have true friends thak you for putting so much time and effort into my case your an angel

 
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