Mrs. Glass

Welcome to our little part of the world. I wish that I had the magic answer to your questions, but I dont. I have only been going through this for a little over a year,and cant imagine what its going to be like in eight years. My suggestion to you is to seek out a Dr that specializes in Dysautonia problems. There is a link on this website that has a doctors list and where they are located. I live in the middle of nowhere, where there is not one dr here that specializes in this. So I am trying to get into Vanderbilt. I have only been partially diagnosed, but that doesnt stop the symptoms, or make my life any better. My doctors are in over their heads,and I have had test after test to find out exactly what is wrong with me, and the meds that they have me on so far either dont work at all or they work too well and I ended up having a minor stroke. So you see a lot of us are in the same position. I agree with you that we have to be our own advocates. When Im too weak to be mine, my family does it. If it gets too stressful, they take over. I am sick of doctors to tell you the truth. Some of them are just a waste of space. My cardiologist is a great doctor for the heart, but he is in over his head with me. More guessing than anything else. But I still go to see him, I guess because I am scared not to right now. Hope you find a doctor that will listen to you. Dont give up they are out there, we just have to keep searching. The internet is a great tool. Vanessa

Greetings to all.

This is my first post in your forum. I came here because of having s/s (signs and symptoms) that seem to involve dysautonomia and, I am wanting to get some feedback as to whether it sounds familiar to anyone. I need this support because of fruitless years spent attempting to Dx andTx this problem. I have spent many thousands of dollars, lost my standard of living, and basically have lost my health. I was an extremely high functioning person before this problem began about 8 years ago. Anyhow, this is what I deal with: I do not have tachycardia. I have bradycardia. My s/s are frequently (but not always) associated with my pulse dropping down below about 56. It goes as low as 46. It does this intermittently and without any apparent association to anything. Positon changes consistently set off the s/s, but not necesarily with a change in pulse rate (sometimes I can go from seting to standing and set off the s/s, yet the pulse and BP stay the same). I used to have orthostatic hypotension, but no longer do. My blood pressure stays fairly stable but low averaging around 110/60. It stays between 98/50 up to 140/90. I get brain fog, light headed, difficulty concentrating and slightly nauseas with position changes. I will get uncoordinated to the point of appearing mildly intoxicated. But, obviously it's not just a decrease in BP (and ergo, blood to the brain) that causes the s/s because the s/s will occur with and without BP and pulse changes. Sometimes (but not always) eating sets it off. The s/s are intermittment and disabling. Lying down helps sometimes. But when it's bad, lying down will do nothing. When the s/s are severe, it feels like my head is filled with lead. It can be bad enough to preclude my leaving the house.

I learned some time back that I have to be my own advocate and that I cannot just passively trust the medical communty to Dx and solve this problem without my leading the way. So, if anyone has any suggestions it would be appreciated. I am not asking for a Dx, just some advice as to whether this sounds like any form of dysautonomia any of you may be familiar with. Would truly appreciate hearing from any and all of you.

Thank you very much

Rossman

You are not alone. Upon everything else I have glaucoma , but some of the problems with my eyes are not related to it. I can not be in a brightly lit room, I could not even look at the Christmas lights without it causing pain and nausea. It has always been a tradition in my family that on Christmas eve we all go out and drive around town to look at the Christmas lights, and I was not going to miss this year. I should have though, by the time that we got home I was in horrible shape. I just hope that I did not ruin it for everyone else. From everything that I have read, vision problems go along with this disorder. You know I never know whether to call it a disorder, an illness or a disease. It is so life changing that Im just not sure. But yes eye problems are all part of it. At least in my life it is. Vanessa

Is vision problems a main issue for anyone? FOr the past 2 months I have been walking around like a zombie feeling pressure in my head and feeling drunk and wobbly. This has never been this bad and my eyes are really bothering me. I have really bad sensitivity in the eyes too. This is so bad I am bedridden. ANy docs give a reason for this and offer what may help? AM I ALONE?

bamagirl

sorry to be so late on responding, between the holiday, and this stupid illness, I have not felt very well at all. No all he has tried me on is Florinef and Midodrine. He has put me back on the Florinef and the Midodrine as well because my b/p started dropping dangerously low. It is not any better though. Yes I do drink a lot of water and salt is my main food group these days. Nothing seems to help. Thanks for the suggestions though. Vanessa

Have you been tried on anything other than Florinef? There are LOTS of other meds out there, not tons, but certainly more options than just Florinef. I had a rough time with Florinef and I did much worse on it, and with lots of side effects. Works for some, others it doesn't. Are you continuing with extra fluids, salty foods, and all those little things? Any little thing you can do is better than nothing, until you can get to a better doctor.

Thanks for the link I will check into it to see where the nearest one is to me. Vanessa

Mrs. Glass,

I don't know if you have seen any of these docs listed but they are supposed to be electrophysiologists. They are located in New Mexico. They also have a search where you can find a specialist elsewhere in other other states if you prefer. I don't know if they see patients who have POTS though you would have to ask further questions to them.

Maybe one of these specialist may work incase you are unable to get your appt at Vanderbilt right away.

http://www.hrsonline.org/find_heart_rhythm...searchbycountry

Good luck and hope you feel better.

havent tried yoga yet. My therapist suggested it but wants to wait until i get some strength back. Thanks Vanessa

I am pleased you will be taking things slowly. If you find it hard to get into the university, keep trying and pushing for it (or a viable alternative).

I also get confused when my BP is low (in addition to lots of other symptoms). My neuro told me to eat lots of salt and drink lots of fluids. I do have lots of salt but it doesn't seem to help. Oh well, maybe I will have a few more bags of crisps a day!

Best of luck with it all - I sincerely hope you get the treatement and care that you deserve.

Do you do any forms of gentle exercise like Yoga? Some of the postures are good for getting blood to the head but for me the effects do not last very long. Maybe worth a try with an experienced teacher who understands the condition and who will go very easy on you (my teacher, even though experienced, gave me an exercise that made me worse, so be cautious!)

Best wishes

Ben

Hi Belinda, just looked in the telephone book and no we dont have any here. This is a small town and I have to go out of town for most of my doctors, but none there either. I agree my Cardiologist is over his head, and I just hope he doesnt make things worse. Thanks Vanessa

MRS Glass- Do you know of any electrophysiologists in your area? I have found that they tend to know a little more about dysautonomias since their specialty is the electrical system of the heart.

I am just recently seeing one now and he was the most valuable to me.

I am starting the florinef at the right dosages-and now I understand why the dosaging seemed so whacky in the beginning.

It sounds to me like your cardiologist definitley should not be treating you for this..in the meantime try and keep your head up and look in the electrophysiologist deal.

Good Luck I hope oyu get into Vanderbilt soon.(((HUGS TO YOU)). Belinda

Hi I have checked on the Dinet home page and this is as close as it gets. I just hope that I can get in. I am so tired of messing with doctors who dont know what they are doing. But I am going to keep looking and begging Vanderbilt if I have to. My family will not let me give up. Thanks Vanessa

Dear Mrs.Glass,

Well, that was certainly an unsatisfactory visit with the cardiologist! I do hope you can get into Vanderbilt. Or somewhere else where they better understand how to help you.

Unfortunately, when you have something that is not well understood, you must become your own advocate and search and not give up until you find the help you need. You are on the right track.

There may be other places that might be able to help you closer to home and sooner. Did you check the doctor information page that can be accessed from the DINET home page?

I share your frustration and can only say, there are doctors available who can help and just hang on until you find the right one to help you.

Hi Ben

Thanks for responding. I agree with you some doctors are idiots. If they dont know how to treat a patient then they just should refer them to someone who knows. I have just finished typing a letter to Vanderbilt University Medical Center begging them for help. I am getting all of the forms filled out to fax to them. My b/p has been dropping dangerously low for over a year that I know of. Maybe longer. my memory is not what it used to be,and I get confused very easily. I thought that my Cardiologist was a good doctor until yesterday. He acted like this was my first visit or something.I know being on the florinef I am going to take it slowly, I dont want to have another stroke. I got lucky on the last one it was just minor. The next one could be worse. I really dont think that he knows how to administer the florinef, because when he first put me on it he did not tell me that you had to take in extra water, and he just told me that the salt was to help raise my b/p. I found out on the internet after I had stopped taking it. I just hope these doctors dont end up killing or crippling me trying to help me. Some times I think that their egos get in the way of their patients best interest. When my b/p is low the only way that helps is for me to lie down. I have tried putting my head between my knees and I feel like I am going to pass out. Hopefully I can get into see someone who knows what they are doing, because this is getting very old and expensive. The new year is upon us and that means that I will have a deductible and have to pay 20% until I get my out of pocket expenses paid for the year. Last year it only took 2 months. But the medical bills are outrageous. I will be paying on them forever. Thanks for responding. Vanessa

I saw my Cardiologist yesterday, and after sitting in his waiting room for almost an hour and in the exam room for two hours, it was such a waste of time. Every time that I think that he is finally going to start to do something to really help me, he pulls one of these duhs!!! My b/p was extremely low and my pulse was very weak, and he had the gall to ask me if my b/p was this low before I had back surgery. I have been going to this doctor for almost a year now and it has always been low. He is the one that ran all of the tests and put me on all of the meds. He put me back on Florinef which is scary in itself, because I had the stroke after he put me on it the last time. And then after I told him that I was scared to go back on it, he said that he shouldnt have raised the dosage so fast, and that he shouldnt have just told me to stop it, he should have tapered me off of it. I just wanted to scream, but of course all I could do was to cry. It was like " uh, have I seen you before"? And also I asked him if my continued extremely low b/p was doing any damage to my heart or brain, he just danced around the question, and never really answered it. He just started explaining how some peoples bodies are geared for low b/p and some are not, and evidently mine was not, or I would not be feeling the way that I do. It was like he knows the answer and will not tell me. I just want to be told the truth. I started to ask him if he was on drugs or something. I mean he was the one that gave me the horrible prognosis for my life, and now he wont even tell me if my vital organs are being damaged or not. Get real this is my life, what is left of it. Well my husband called me on my cell just to see how close to home that we were, and I told him that I barely got out from seeing the doctor,and told him what was going on, and my husband blew, he insisted that I get ahold of Vanderbilt and beg if I had to, just so I can get competent doctors to help me. I hate it when my husband blows up, it is so unlike him. Before I got sick, nothing ever made him get mad, and now look out docs because here he comes. Thanks for letting me vent it was a very frustrating day,and I really got no answers at all. I am scared to take the Florinef, because of the last time that I took it, but I am going to keep closer check on my b/p this time, and I have read up on Florinef, and I know how to take it now, which I did not before, and the doctor failed to tell me. Wish me luck on getting in at Vanderbilt, they are my only hope right now. Vanessa

My vision is horrible, but worse when my symptoms are worse. Some morinings I get up and can barely see enough to get to the bathroom. Although I do have Glaucoma, and the beginning of Macular Degeneration. I dont know if those two are causing it or this other stupid disorder. My eyes seem to be getting worse day by day. I do have an appointment with my eye doc next month though. I would ask him, but he doesnt know anything about autonomic disorders. Vanessa

Does anyone else have vision changes since they developed POTS? My vision is very bad when I am symptomatic. I can't read because the words blur together and my eyes are very sensitive and tire easily. I have had a full eye workup and the eyes are normal, it's something systemic that is causing it. Just wondering if it's normal in POTS.

bamagirl

I too have those nights where my ambien does not work, dont know why though. But I can not work so I can sleep the next day. Wish I could help you in some way. Heres hoping that you get a good night sleep tonight. Vanessa

Just a quick vent... I frustrated with being unable to fall asleep. I've been taking Ambien every night since the middle of last week.

I'm back to work, and of course, need my rest to keep healing from this bout of pneumonia. However, for some reason, Ambien has stopped working for me, even after increasing the dose. Took it at 9pm. Got out of bed at 11 to add 2 benedryl. No dice... still wide awake at 1:40 am. Just took a xanax and am praying it will kick in--i really need to make it to work tomorrow to help cover for one of my teachers--her husband is having a major surgery tomorrow and I promised her I'd keep an eye on her staff and the kids. Here's to hoping sweet dreams are coming. In the mean-time, I was at least productive this evening and typed up a report on one of my students that I need to send to his doctor.

Vent over. Thanks to this forum being here 24/7.

Nina

Welcome Kelleigh, yes I too have these symptoms which are scary, but do not hold back telling your doctor. He or she needs to know everything that is going on with you. My first doctor told me that It was all in my head, and to just stop worring and get a job, so when my family insisted that I get a different doctor I was hesitant to tell him everything. Good thing one of my family members was there because what I left out they filled in. I am still hesitant about telling him everything, but I know that I have to, to get a proper diagnosis. If they do not know what you are going through it is just going to take longer for them to diagnose you. Hang in there. Vanessa

Dont know, my doc thought that it was my gallbladder, but it is ok, and he hasnt said anything further about it. but if you find out please let me know. I dont eat much anymore because of the nausea and bloating so if I could get some answers too it would help. Vanessa

Has anyone had a doctor explain what causes the nausea in dysautonomia? I wake up sometimes with nausea in the morning and have waves all day long for days. Since I have these horrible surges in BP and hear rate and no BP drops or fainting, I wonder if something is stimulating the part of the brain that triggers nausea. Anyone get any confirmations on this theory?

bamagirl

Jacquie, I wish that I had the answer for your question. I can not even go to the bathroom without getting fatigued. My doc says that it will probably go away when he gets my b/p to stay up for a while, but I dont know. I have to send my husband or my daughter to do my shopping. The only time that I get out anymore is when I have to go to the doctor. Wish I had answers for you. Vanessa

Why do I get so tired after going out for an hour or so? Today I went to the store for maybe about 45 min, which has been the longest I have been able to go for the past few years!!!!!! However, now I am ready for bed, I am soo tired and can barely keep my eyes open. I take Toprol which does cause fatigue, I dont think the fatigue is as bad as it was before, but how come little activities make me want to sleep for days????

Thanks just what I needed this morning, a good laugh! Have to go to the Cardiologist today,and dont want to. I guess funny things do happen to us after all. Vanessa

okay...this is a completely out-there post that neither requires, requests, nor deserves any responses, but...i couldn't resist and KNEW that only you all would get it.

i am OUT OF SALT! minor crisis, no?? i had no clue. but it's gone. all gone. how sad is that? i'm heading to my parents by friday so can live on already-salty foods in the meantime but i couldn't believe that i let myself run out...

anyway, laugh away at me all you like. i'll have to add salt to my list for santa.

saltless me

Bamagirl, when I read your post I cried for you. I wish that I could just reach through this computer and give you a big hug, just to let you know that someone cares what you are going through. I agree with all of the other posts, you need to reach out to someone. Dont lay there alone, there has got to be someone who can be there for you. If all you can do is to talk to someone on the phone, that will help a little bit. I too have feelings of ending it all at times, but then I look at my family, and think of what it will do to them. Also I look at my Grandsons,and think oh my God if I do this it will give them an option when things go bad. I have to fight those feelings of doom all of the time. I have a great support system with my family and my therapist. Even though she is on Holiday leave, she told me that if I needed her, she was only a phone call away. Hang in there girl. Call your doctor and tell him that you have got to get some relief of some kind, even if all he can do is to give you something to help you sleep. I wish that I could take all of your pain away, but all I can do is to let you know that I am here, and I understand. My prayers are with you sugar, hang in there. Vanessa

I am so sorry for all the whining but I feel like my life is over!! For the past 2 yrs I have been bedriddden, unable to do anything except lay in bed. I am having daily adrenaline surges that make my bp shoot up to 167/100 and my pulse 210. Then afterwards I have migraines, nausea and horrible fatigue. I am also so tired from the low bp and hr in between these surges that I am useless!! My body hurts all over from the stinging nerve hypersensitivity. I have been drinking 72 oz of water everyday and eating so much salt but nothing is helping!! I also have these involuntary limb jerks and audio hallucinations with sleep paralysis at night so sleeping is miserable also. My eyes have also started watering constantly and I discovered that is also a neurological problem as well. I have been dealing with this for 5 years and I am worse now than I have ever been in my life!!. The problem is, everyone is telling me it will get better just be patient but I am NOT getting better. It is all I can do not to find something in the cubby to swallow and end it. Any one out there who can give some advice I really need it now!!!

thanks everyone,

bamagirl

Yes it happens to me all of the time. Also sometimes I do not know that I have to go until I have already wet my pants. I now wear depends when I go out. And at home I have pads where I sit and lay. It is frustrating. I tried wearing them at night but they caused a rash, so now I am going to buy a rubber sheet just to save my mattress. It is embarrasing. I am only 48 and I never thought this would ever happen to me. Dont get the ones that are plastic lined they are horrible and make you sweat, which is worse than peeing on yourself. Vanessa

Does anyone have problems with almost peeing their pants. In the last couple of days my urgency to go is crazy..twice I have been in stores and almost wetted my pants..

Tell me this is something that can happen.

I am so embarrased to ask but geez 28 yrs. old and I didn't think my bladder was that bad.

Yes I have had two kids but wow...how funny it is like being a kid and having to hold it for like hours and then all of a sudden whoosh gotta go.

Thanks guys- I better go buy some undergarments thingy's.

I havent been around for a few days, because I have been on the couch. I have not been able to sit at the computer, or see good enough to type. My b/p has been dropping drastically for the past few days and nothing is helping. I have tried extra water, salty drinks, and foods and nothing seems to help. I take 10mg of Midodrine a day,and 2 hours after I take the meds I have to take my b/p and it does not help at all. I still cant get back in to see my Neurologist, my husband is going to call today,and demand some answers. I have an appointment with my Cardiologist in March, but when I called his office, they wanted to see me as soon as possible. Which is Thursday. He is booked tight until then. He did say that I needed to go to the ER, but I just laughed,and told him that they would not do anything for me, he said that if it got any worse, or if I started passing out or if my heart started acting up again, to call him before I went to the ER and they would start treating me right. Our ER is horrible here. They will admit someone who is dehydrated, but send someone home who is having a stroke. This hospital has been sued over 100 times just since they opened the new building, and lost every law suit due to negligence. I am actually scared to go there, but it is the only one within 80 miles. Hopefully the doc can give me some answers on Thursday. I just keep wondering what is happening to my brain, and heart when my b/p is so very low, I mean are they getting enough oxygen, and if not what damage is happening. I better go my eyes are graying out again, so I know that I have been sitting up too long. Thanks for letting me vent. Vanessa

I just want to thank everyone for all of your support, and kindness. It has helped. I know that my family needs me, and I love them all very much. I dont know what I would do without the support from all of you. There are a lot of minerals and herbs that I can not take because of the Coumadin that I have to take every day. My Cardiologist took me off of all of my meds for depression, he said that it messes with the autonomic system. The thing about it is since I have been off of them I am no better, and I have told him that but he either is not listening to me, or he is not understanding me. I still dont have another appointment with my Neurologist. I called yesterday and they didnt know what I was talking about and told me to call back in 3 days. Very frustrating! I go for another cat scan today, because in June they found a mass in my chest, so I have to have another one to see if it is still there. I really hope that all of the xrays, cat scans, mri's and nuclear tests that I have had this past year are not harming me. I am almost afraid to ask. Well I am not seeing so well this morning and it has taken me forever to type this out so I will go for now. Thanks to all of you. Vanessa

Nope, just everything tastes wierd. I thought it was the meds messing with my taste buds. Vanessa

Does anyone here have "overactive taste buds?" It seems like anything I eat including katsup and stuff makes me cringe my face...

Nope never seen one. My cardio has never mentioned it either. Vanessa

My doc says I should see one just to rule out that there isnt anything going on vascular from my feet to my heart cause he says Pots and vascular problems has the same ill effects. I'm gonna mention it to my cardo doc on my first visit and see what he says. I was just wondering if anyone else has ever had this checked out?

Thanks

PS...By the way, we got word that the movie my son is in will premere here in Parkersburg, WV Jan 12, 2006. I just hope I feel good that day, pop an extra beta blocker and load up on salt that day I guess.

I have read a lot on here about ablations, just what is an ablation? I have never heard of it before. Glad you had a good experience though. Vanessa

I just wanted to post a message here to let you know that ablations can be an okay thing with POTS. I went in knowing that it wasn't going to correct the tachy caused by POTS. I was having bad tachy caused by SVT and they were able to correct it. I was sedated for about 5.5 hours and had low BP the rest of the day and through the night but the next day it gradually started going up. It has kind of been all over the place at times but overall I'm extremely happy with how well my POTS has been. I was prepared for it to be way worse than this. It's going to be a struggle for a while but I'm confident that it's going to get better. And I have one less thing to deal with because they were able to get rid of the SVT issues I was having. I know there's been a lot of bad experiences with ablations...this was in fact my 2nd one. It's actually been way better this time around as far as the POTS goes. I know it could have gone the other way easily but my dr is awesome and well educated about POTS. I also believe he was overly cautious with me because of the POTS. Just wanted to share a good ablation experience.

I have started having the sensation of pins and needles lately, I thought that it was due to my back surgery, but he only messed with the right side. So I dont know any more. They are not bad, but just annoying so far. When you find that store for new bodies, let me know I could use one too Hope you start to feel better. Vanessa

so i've been having some not so good new symptoms the past few days. since monday morning non-stop. before that it had happened a few times over the past few months but only for a few hours at a time. now it's not going away. i have pins & needles/tingling/electrical "shocks" of sorts in most all of my body. everywhere but my trunk and my head. i wouldn't call it pain but it is SO uncomfortable. and i'm definitely weaker than my norm....usually my strength is okey dokey. i've had pins & needles & some numbness for a long time now in hands/fingers/toes/feet/calves but never non-stop or to this degree. and my vision is a bit blurry too. something i was pinning on the adderall that i tried recently with no luck but have since stopped with plenty of time for it to be out of my system (but yea, i can eat again )

and yes i've talked to the docs. several of them. my primary wants me to see the neuro who is being a ______ (fill in the blank, made worse by the fact that i originally really liked him). he's now ignoring both me and dr. grubb's letters & phone calls. we did try fluids and it did nothing for me (though at least i have a good outpatient set-up to get them now which doesn't include the ER). dr. grubb thinks my neuropathy may be progressing and bringing on the new symptoms. i was hoping they could be b/c of low B12 which we've recently discovered but no one thinks so. i'm hoping the B12 shots i started will help SOMETHING but i'm definitely frustrated (can you tell?) and the fact that my B12 is so low and my potassium levels keep dropping and other blood levels are semi-low has us wondering about additional GI issues again....possibly celiac.

i've had other wacky bloodwork as of late too...high Anion Gap, low CO2, low BUN, some other random things i'm forgetting. i've looked it all up and know that it can all mean lots of things or not much at all since i've never had issues with any of it previously (except for the potassium) the general consensus is that my body isn't too happy in general.

dr.g wants to try some new meds for the pins&needles/tingling but we both realize they could make me worse rather than better, especially since my last few med tries have been more than a bit challenging. so he wants me to try to get through the semester first, aka finish up my two papers, which i want to do too but it is SO hard right now as i have a hard time typing or focusing on the computer for any amount of time. this is taking me much more effort to write than my norm as my fingers keep slipping onto the wrong keys.

i made it to my last class today and could hardly keep my eyes open in class & was visibly shakey & could hardly get my wheelchair in & out of my car, something i've never had problems with. it was my first time out of my apartment all week other than the IV trip. i may have to take an incomplete in one class b/c the prof isn't sure she can grade my paper on time since it wasn't turned in this week; when i picked up the incomplete form today a support services lady had the audacity to tell me that taking incompletes is a bad thing that only gets people into trouble. as if i WANT to be taking one! and what business is it of hers anyway?? i'm sure some people abuse them, but come on.....i'm fighting SO hard to be doing the school thing at all and if i have one incomplete that will be taken care of long before next semester starts & largely b/c of the technicality of my prof not getting papers graded fast enough (by her own admission) then i don't need a lecture on it.

ggggggggrrrrrrrrrrr. ggggggggggggrrrrrrrrrrrrrrr. gggggggggggggggggrrrrrrrrrrrrrrrrrr.

and to top it off i found out today that i have to pay the $50,000+ back to the army from my college scholarship obligation that i obviously couldn't/can't fulfill. there's A LOT more to that mess than the money that i won't go into; by no means did i do everything right in the midst of things years back but i really did NOT need to get that notice in the mail today.

as much as i'm generally a positive person my body's downslides are not following my mind's determined lead. i'm not having ups and downs and haven't for over a year now...the ups are all but missing. the whole "it can only get better from here" attitude isn't working b/c more times of late when i think things can only get better the opposite has been happening. primarily physically but otherwise as well. and it's getting SOOOOOOOO old.

ok. sorry for the lengthy vent.

anyone else have such major issues with pins & needles/tingling/shocks body-wide?

a very very tired me...

melissa

Ernie dont feel bad because you kept a secret. It is harder when you voice it than when you keep it sometimes. We dont want to admit that we are terribly sick, and that is ok. It is hard to accept. You are only human, you have fears just like the rest of us, hang in there. My prayers are with you. Vanessa

For the past 2,5 years I have been keeping this secret but now I just can take it anymore. I know how some of you worry a lot and I did not want to scare anyone. Tonight I speak because I feel so lonesome.

Since June 2003 I have been told by 3 different world researchers in 3 different research facilities that I am a very complicated case. The 3 of them have told me that I have the highest adrenaline level and they don?t understand why I am still alive because people and lab animals die before reaching the level of adrenaline that I have. They can?t tell me what to expect of my POTS because I am the benchmark.

They told me my heart and breathing could stop anytime during an episode!!!!!!! And then I would fall into coma and die.

Last week, after looking at my blood work taken during an episode, my specialist told me that I have to be careful because I could die during one of them!

I try not to think about it but next week I have 2 days of testing and they are going to trigger 2 episodes. I just worry so much because I want to get the tests because it will help find better meds but I don?t want to die.

Before my brother died, I was telling myself that doctors were exaggerating. But now I know different and I worry.

I am sorry if I can?t uplift your spirits when you guys and girls are down but I feel so crushed by this sense of doom that I don?t have the emotional energy to give you what I had when I was ?healthy?. I think of all of you every day and I hope I will still be there for you many years to come.

I am going back to bed now hoping to sleep it off.

Thanks for reading me.

Love

Ernie

I had an appointment with my Psychologist yesterday, and I got nowhere. All I could do through the whole session was to cry. I am so tired of everything lately, and now the holidays are upon us and I dont feel in a holiday mood. My daughter and grandsons decorated my house, and that didnt even help. I am so frustrated with my life right now. I hardly ever get to see my husband because of his two jobs. When he is home he is always so tired. I try not to ask him to do anything for me, but he cleans the house and does the laundry in between his jobs. I feel so guilty that he has to go through all of this. I just wish sometimes that I could just go to sleep and never wake up. My family would be better off. I told my therapist that yesterday, and all she could say was that it would not solve anything. It would take some of the stress off of my family. I just dont know how much more that I can take. My eyesight is getting worse and worse so I dont know how much longer that I will be able to sit at my computer and talk to everyone. This forum is my lifeline right now, and I cant bear the thought of not being able to talk to all of you. You are the only ones who understand what I am going through. I am depressed all of the time and my docs wont let me take anything for it. Some times I just want to scream. I am sitting here crying right now trying to figure out what I can do with the rest of my life to be productive,and nothing is coming to me. I feel like I am being punished for something , but I have no idea what it is. I have always been the one to help others, doing whatever I could to help when someone needed something. I want that life back! I hate being the one that always needs the help, and my doctors dont seem to be taking any of this seriously. I saw my PCP last week because the senocot was not working and all she told me was that I needed to move around more. I WISH I COULD! I wanted to scream at her for her just to help me, but I kept my mouth shut. Thanks for letting me vent. It hasnt helped, but it was a good try. Vanessa

I am so sorry for your loss. I wish that there were words that could take your pain away. But remember to take care of yourself. You can not do anything for her family, since evidently they dont consider you family. Hate is a horrible thing and it will fester in a person and grow. I too am estranged from my siblings, some of them I have not seen or heard from since my Mothers funeral in 1993, but I have come to grips with it. They dont care anything about me, so I concentrate on the ones who do. My children, my husband and my grandchildren. I wish that I could just reach through this computer and take all of your pain away. My prayers and thoughts go out to you for a better day ahead. Vanessa

My sister died yeaterday, just a 51 y.o. on a job interview. My family is so broken, you always think you will have time to come to peace with one another. My mother died in April, my step-father in Jan. My pots is starting to storm. I just had oxygen delivered yeaterday to sleep with so I think I will sleep. Sadly my sisters family didn't even include me in her obituarycolor]. Alchoholism and anger its sad.d yesterday that my sister died. Just collapsed and dies!!!!!!!!!!![/

I too have student loans that I would like to have written off. Mine is with Sallie-Mae, as I have not been approved for disability as of yet they wont even consider it. So I have to keep paying every month. They will only let you have 1 years grant to wait on payments, and I have already used that due to hardship. So I have to pay them until my disability comes through. What I would do is to write to them again and explain what you have explained to us, that you were in denial, and that you wanted to show everyone that you could do this. It may not work but it is a try. Also get another form for your doctor to fill out, and take in the reciept and the cancelled check to them to show them that you paid them once and they lost the form, and you should not have to pay for it again. I know beurocracy is hard to get through some times. That is why I hired a disability group to handle my disability claim. Hope you get some answers. Vanessa

hey guys..

I have been going round with the AES here in PA.. about getting my loan forgiven (discharged)... since like april of this year.. well I sent an application in in like May/June and it got lost.. so i sent another one in.. and they said the information was not complete.. so yet another form was filled out correctly and they denied that b/c my cardio at the time stated that my disability began in 1995.. when in a sense of the word...is true but.. as a teeneger I didw ork and attend coolege before I got very sick.. so now.. I had anew form done by a different doctor.. and they (the docotor's office) lost it! they have no record of it any where in my chart.. but they charged me a fee to fill the form out.. and cashed that checked.. and I have no form to turn in!!

Now to be truth full I'm not exactly certain when my date of disability began.. as I have had it for a very long time now.. at the age of 11-12.. i got very symptomactic.. and stayed that way for years.. then at 19.. i got even worse.. then started doing alittle better...and went back to college... then crashed again.. and have progressively gotten worse over the past yr.

In a realistic sense of the word i can say that my disabilty(s) have been there since birth..but at the age of 12 I got sicker at the age of 19 even more sicker.. and now at the age of 23.. i am virtually house bound.. and now have to use a wheelchair.. last year my PCP didint leave alot of room for negotiation concerning school.. she wrote them a letter.. and they(school--dean) talked to me and so on.. and here I am a yr later..

so I am wondering how you guys have handled this?? They told me on the phone today (AES).. that I would not qualify b/c i was disabled before I went to school..

I dont know what todo!! there is no way that I can pay over $200 loan payment every month for the next ten years.. and I take blame for my own stupidity in not coming to terms witht the fact that "hey girl tis is serious!'

I was still in denial that this pots was kicking my rear... and wanted to prove to myself( and family=friends) that i could still follow thru with my dreams and goals despite the fact.. that i' couldnt handle a 2 hour class at one time.. or pas out at school or on the bus.. or had to leave early so many days b/c i couldtn see straight or hold my head up.. not to mention the days where I'd get up and pass out beore I'd leave for the 45 minutes bus ride into town..

so I stuck it out.. with out being realistic.. and thinking "how are you going to pay this back?"

I couldnt accept the fact that multiple docs were telling me that chances of me working again where slim..and unrealistic...I was being stubborn and in denial..

Ok sorry fot he vent there...

any inut would be appreciated

dizz

When I first started getting symptoms I was walking twice a day. It was therapy for my back after a car wreck. Then one day I could not walk it I was so weak that I could barely make the block. My heart was beating funny. It would beat then vibrate. At night it would race so fast that I could not sleep. The fatigue got to the point that I could not walk by myself, and my b/p would drop so low that it could not be read. I ended up in the hospital 4 times for the same thing. And once in ICU because my b/p was so low. My docs thought that it was a blockage in my heart. After all of the testing it was not. Now I am still going through tests to find out what it is. All of my symptoms point to Shy-Drager. One doc said that it was a good posibility, and another one said he wasnt sure that he would have to research it some more. In the meantime I am still suffering, and no closer to a dx than when I started. It has been a long hard year.

beginning symptoms fatigue, heart beating wildly, low b/p, dizziness, weakness, fainting, and near fainting, headaches, vision problems, constipation, and I can not remember all of them. But the symptoms are getting worse with time. Now I can not walk without a cane as I am afraid that I will fall. Hope this helps you. Vanessa

Hi, I am just wondering what everyones first few symptoms of POTS were before they got a diagnoses. My doctors believe that in July 2003 I came down with a viral infection and that is how I "got" POTS. However, before that even happened all throught high school I would sleep for hours and missed alot of school because everyone thought I was being lazy. Some still do to this day I think. I don't remember having heart problems then though, I just know my bp was low.

My symptoms starting in June 2003 (when Dr.'s think I got a viral infection that caused POTS ) were

Tachycardia/arrhythmia

Blood pressure problems

Tingling in extremities

Lightheadedness

Black Vision

It seems like I am suffering from more symptoms now though, such as the blurred vision, vertigo, and many more. Is this a cycle that occurs before a person gets better?? Or is this just the beginning of getting worse?