well i am feeling really depressed about my illness POTS with no explanation so far i cant work anymore or do much of anything...i feel too sick all the time....i have anxiety that i will die from this and be shut in forever until i do die....i want to do things so bad but i know i cant feeling the way i do....i basically live in my room watch tv go ont he comp and read sometimes i wish i could go out with friends and go on dates again but i just cant,,,i guess i just need reassurance from somone that ill be ok again....i was reading about POTS and read that from a certain kind you die within ten yrs shy dragger syndrome help me please
I am sorry to hear you still haven't been feeling yourself.. I could understand how and why you would be feeling depressed, being that you are young and confined to your house and bedroom doesn't help the situation all that much.
I am wondering have you returned to the Doctor that diagnosed you?
Perhaps it's time to go back to that Doctor and explain your feelings of depression. Maybe they can prescribe you something to help you through your depression. You shouldn't have to suffer feeling sad, and sick all the time. I know you have POTS but I am also sure there are treatments available that could help you live a normal life.. Remember what I told you before on these posts, stop reading ALL the Horror stories on this condition.
I think you should research this condition with an open mind.. And stop putting thoughts in your head that you are dying.. The truth is we are all going to die one day, why waste today worrying about that day, when that day could be very far into our future and is something we really don't have much control over.. I think you really need to speak with someone professionally that can help you through this depression you are experiencing along with your thoughts on dying.. I hate to see you battling your own thoughts all the time. I know you feel sick and this could be frustrating.
I myself feel this way all the time, some days I am so dizzy and my head is so heavy I have a hard time just functioning!! But I still have to try and live a much normal life as possible, I do what I can, I don't expect much from myself, and I try to take each day as it comes, and I try not to let my thoughts run wild because this in turn only causes me more depression and more anxiety!! It's a vicious cycle.. I know first hand what it feels like to feel unwell and not be able to do all the things you once did or want to do.. It's difficult when everyone around you is doing things, and living normal lives and you are lucky to be able to just get out of bed to brush your teeth.. I know nikigrl how much it hurts, but I also know you will make it through this, keep talking, writing, posting, and most of all keep believing in yourself.. By all means never loose hope or faith in yourself!! I mean that...
Feel better & I hope to hear from you soon! boxerlover
reading your reply brought tears to my eyes you are such a blessing to this board ...thank you for taking the time out of your day to write to me you really have helped me through some days when i feel hopless...i am sorry you have to go through what you do too...i hope one day you dont feel dizzy anymore...thank you so much...im trying to deal with this as best i can it is just so darn hard to everythihng is an effort now, and i realise i took life for granted before i use to stay home alot before too becasue my ex boyfriend who i was so in love with kept hurting me and i was devestated i wanted to die then....now i wish i could have my life back i realise how lucky i was back then ,,,have a great day talk to you soon
I get anxiety because I think of my scolisis and Chiari Malformation. Chiari Malformation (1) is a malformation at the base of the brain, in which a downward placement of the brain is present, and there is a herination of the cerebal tonsils. In my case, like many others, surgery is not needed, but I still get very down when I think "Why me?" I cannot even horseplay with buddies anymore because I am afraid it will mess up my Chiari and cause huge problems. I suffer from headaches everyday, but can still do activities all of the time. I hope both of you get better.
I am so glad I made you feel a little bit better (Big Hugs)
I have been doing a lot of research on POTS, and chronic orthostatic intolerance which is just about the same disorder without the sever blood pressure changes. I myself think I need to be tested for this as well as the migraine associated vertigo theory I have being that I suffer from daily chronic headaches. Being that I have a lot of symptoms that are associated to what you have and what you feel I truly understand your pain.
These disorders are often mistaken for emotional distress disorders like anxiety similar to what happen to you. Symptoms include dizziness, lightheadedness, Loss of balance upon standing and tachycardia which includes heart rates up to 120-130 beats while standing... ALL this I have!! They mention that most who have these disorders tend to lay down most of the day because this is the most comfortable position without feeling as much of the symptoms.. This is true for me I can have a normal resting heart rate and as soon as I get up my heart rate starts to clime.. Sometimes I can run a heart beat as fast as 137 beats per minute and as soon as I lie down my heart rate drops to 100 that's a big drop I think.. plus I suffer from vertigo/dizziness all day long which is a challenge in it's self!! I understand your feelings as if they were my own and you are right we take so many things for granted when we are able to accomplish them and when we can't we realize how important the little things are... Like just as simple as taking a nice autumn walk! How I would love to do this, sometimes I get up from the couch and I am so lightheaded I have to lay back down in fear of passing out that I can't even walk to the get myself a drink without feeling horrible, then there are days that aren't as bad, and on those days I try to accomplish as much as possible in fear of the return of these horrible feelings.
I know what it's like to be on the inside and feel as if you just want to cry and say why me? I know what it's like to feel like each day is just passing you bye and you were unable to enjoy just one ounce of that day. But you know something, I look around and I am grateful for the wonderful love and support that I do have from my family and friends and I look at my beautiful daughter and think to myself yeah she deserves a mom who can take her for a bike ride, or play ball with her in the yard but just because I can't do those things right now, I am not going to give up hope that one day I can and will.. I may be missing all the little things that I used to be able to do, and feel a little resentful at times but now I stop and look at all the little things that I can do and appreciate them EVEN MORE!!! Like giving my little girl hugs and kisses and actually "showing" her love emotionally that's the important things.
The good news is that all this research I have been doing has mentioned that this condition is in no MEANS life threatening! Yes quality of life may change without proper treatment, but there is no risk of sever illness to the heart. I just wanted to share that with you. They also mention that swimming is good therapy for this condition as well as fluid intake increase, and higher salt intake.. I don't know if the Doctor's mentioned this to you.
I know that along with ANY illness comes the reality of anxiety as well as depression. And these are two major factors in the way we feel mentally and physically!! That is way I post that is why I try my best to let others know that they are not alone, sometime just that comfort or that understanding, as well as that smile that some other may bring to your face is medicine in it's self!! I hope I can continue to ease your fears as well as offer you that support you need, because in return you make me feel as if I just accomplished another wonderful thing today, that means more to me than any autumn walk!! boxerlover
Last edited by boxerlover227; 09-24-2006 at 07:47 PM.
Hi there. I think the chances of you having shy drager are VERY rare. They probably would have already found this if you had it. I hope you are feeling a little better with the beta blockers. Have you found any of the other online support groups for POTS? There are a couple of really good ones out there. It would probably be good for you to connect with other people that have the same condition. A lot of people can lead a pretty normal life with it.
I totally feel you on the anxiety part. I actually came on here to post about my obsession with my heart and then I saw your post. I am feeling really sorry for myself and having the "why me?" feelings again today. It is no fun to live like this! I'm sorry you are feeling so down. Please try to stay positive. Negative thoughts like thinking you are dying are certainly not helping you. Have you ever tried yoga? That may help you learn to relax a little bit. I used to do it and have been thinking about finding a class somewhere.
yes i am on a half of atenol a day but i just wanted to tell you i get the low readings too mines has even gone to 45 at night i take the beta blocker when i wake up around 12 lol then i start getting the low heart rates around 8 pm then when i wake up it usually in the 70s then when i stand like 100 ....i wrote to you on your thread and told you this as well...and now i know why we are always dizzy and lightheaded our heart rate goes up and down and hows your blood pressure by the way? i wouldnt worry you had all the necessary testing leela and passed but i know how you feel....at least you passed the tilt test lol
what heart tests have you had done? i have had a 24 hr holter like7 ekgs a treadmill stress test and an echocardiogram all were ok except my heart rate was high on the treadmill test but he wasnt worried ....do you think i have a heart condition in itself? would those tests rule those things out
Hey Niki. I have had numerous EKGs, a few echos, two holter monitors, a 30 day event monitor (which I only wore for about two weeks because I am allergic to the adhesive on the leads and my skin got too raw to keep wearing it), a stress test (my heart rate was high too) and the tilt table test. It sounds like you are sensitive to the beta blockers too like I am. But I guess I'll take the brady over tachy.
No, I don't think you have a heart condition in itself. I think you have been tested pretty thoroughly. And you never know with that tilt table test. You said you were anxious and you knew your heart rate went up when they lifted you up. Who knows if that would have happened if you hadn't been anxious. When I had mine done I had a saline IV and was very relaxed when I did it. I could have sworn I would have failed it, but I didn't.
I guess we both need to try not to worry so much. I know - much easier said than done. This is really so frustrating. I'm having a pity party for myself today and I need to snap out of it.
Oh yeah and my blood pressure is pretty normal. If anything it is on the high-normal sometimes. The lowest reading I ever had was 98/58 and that was at the doctor's office a few weeks ago. I still think that was a fluke, but I wasn't going to argue with her. I don't have a monitor at home or anything (geez, I would probably hook myself up every 5 minutes if I did) but sometimes when I go to the drug store I check it. It is usually 110-120/70-80.
today is horrible,, my heart was really high this morning i took the beta blocker it helped before but not its high again and its only 7 pm ..i had to go to the root canal doctor today to make sure my tooth wasnted still infection and causing this and of course it wasnt but he then asked me what my symptoms were and i told him he then asked me if i had hormones tested i said ya and there was a putitary problem he then said that control everything in the entire body and that could very well be the casue and thats what i thought to before i was having all kinds of period issues lactacing hats why im on broocriptine for that i wonder if my other hormones are messed up to hormones are very hard to deal with. and diagnose,,,that would explain all of this if i could only do the tests!then the dentist said that its really odd i am like this and it doesnt make sense
I am sorry you are having a bad day! So what is this Dentist telling you, that your hormones could be the cause of all this and perhaps you don't have POTS? I am not sure I understood your post... If it makes you feel any better I have been having a crappy day yesterday and today! I have been reading a lot of the new post and now I am starting to worry because my heart rate is extremely high compared to everyone elses.. You mentioned yours was high today, how high? Maybe that's why I am always dizzy when I stand, because my heart rate is so out of whack!!!
well boxerlover you can actually develop pots from hormones becasue like i said before pots is a syndrome not a disease there are many things that can cause pots so yes its possible becasue the puitary gland doesn pretty much control everything just liek the brain,,,as for my heart rate usually it is pretty normal resting but walking and standing it can go as high as 135 but it hasnt in awile today it was over a hundred this morning now its int he low 90's but with the beta blocker its usually in the low 70s or mid 60s at night it tends to drop to the 50s which is scary i mean restign it will be 50s otherwise it will be like 60s or 70s boxer do you take a beta blocker ? how high is yours resting and standing>
I tried a beta blocker but I couldn't handle the side effects..
I was so lightheaded, fatigued all I wanted to do was sleep, It did drop my heart rate into the 50's/60's and the doctor said that was a good thing! Meaning it was doing it's job... I wanted to give them another try but just haven't made the appointment, I heard they are used to treat headaches, and I am a chronic headache suffer so perhaps I need to give it another try!
My heart rate is all over the place, I think I am going to start a new post.
Last edited by ms_mod; 09-25-2006 at 05:25 PM.
Reason: Removed information that is contained in your new post. Ms_Mod