yuliya Posted June 15, 2011 Report Share Posted June 15, 2011 Have you ever felt like even after you had a positive tilt test and always feel bad that maybe its all in your head? When your doctor continues to doubt your sick even if the test say you are it makes you wonder. Sometimes I feel like giving up looking for an answer and think maybe it is in my head, but if it is why do I feel so bad. Some days are so hard. Quote Link to comment Share on other sites More sharing options...
MamaTrain Posted June 15, 2011 Report Share Posted June 15, 2011 I totally know what you are saying! I am so sick of wondering ALL THE TIME about what caused this reaction or that episode or whatever it may be! A mental health day is in order for sure! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 15, 2011 Report Share Posted June 15, 2011 I never feel that I am crazy or wrong. I just get to the point where I want to scream due to the inept medical care I get.For instance, I had an endo appt. recently. I ended up seeing the NP instead of the doctor. I was trying to explain my my history, and then my worst symptom of flushing, redness and swelling. I actually started having an episode and was able to show him the hand swelling and redness, along with the blueness that they also get. He said it is most likely related to my POTS. I was sitting. I explained that I've had POTS for many years, but this flushing was just within the last year. It is still POTS related. And, he told me to go see my cardiologist for it. What, the one that said to drink a yogurt drink and go home????This is the level of care I am getting right now. Go to an appt., listen to some moronic explanations, and get booted out the door, while they be sure and write down the highest fee allowable.All of this makes me wonder what is happening to the quality of our healthcare. Doctors who don't want to doctor. Quote Link to comment Share on other sites More sharing options...
lieze Posted June 15, 2011 Report Share Posted June 15, 2011 Yes all these symptoms and sensations make me feel like I am going to lose my mind.Sometimes I get this feeling in my head that I am just going to go into a seizure or something.I hit ER now in a pattern of once every three months like click work. My symptoms and fear build until I have an episode so bad I dial 911 only to be told there is nothing wrong with me.Like clockwork the week prior to my period I end up weak and crying thinking I am dying and end up my moms with the kids.Hormones is making mine way worse and according to my mom this could last for years.I am 44-yikes!!!I guess it's strange but I can't wait to get over the hill'Maybe I can ride a skateboard and get there faster.I swear between what goes on between my stomach, my heart with all these pseudo heart attacks I think I'm having and my head-I feel like I'm ready for the loony bin.I do want to say that I read a lot of posts here and I never think anyone else sounds crazy-it's me!Sometimes I think I don't even belong in this group and I feel guilty like I've made all of this up in my head and it's a delusion.Thanks to everyone for putting up with me.I really do care about everyone here and I wish you all good health. Quote Link to comment Share on other sites More sharing options...
lieze Posted June 15, 2011 Report Share Posted June 15, 2011 My eyes don't look right either-when I try to take a picture they look all buggy and psycho.I think I am just so full of fear and trauma and it's just oozing out if me.I really wish there was a way to get a handle on this. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 16, 2011 Report Share Posted June 16, 2011 Well said, Sue! Sometimes I feel crazy too (during more vulnerable moments) and other times it is all crystal clear - I have a "rare" condition and there aren't many Dr's equipped to deal with it. I know this is not a figment of my imagination, but sometimes feel so beaten down (by the symptoms, the lack of medical understanding, by my limitations) it's hard to cope with emotionally. Thank God for this group. Quote Link to comment Share on other sites More sharing options...
yuliya Posted June 16, 2011 Author Report Share Posted June 16, 2011 Well said, Sue! Sometimes I feel crazy too (during more vulnerable moments) and other times it is all crystal clear - I have a "rare" condition and there aren't many Dr's equipped to deal with it. I know this is not a figment of my imagination, but sometimes feel so beaten down (by the symptoms, the lack of medical understanding, by my limitations) it's hard to cope with emotionally. Thank God for this group. I'm so glad I am not alone in this feeling. Today has been a horrible day and days like this make me want to give up on life all together as horrible as that sounds. Of course this in not an option, I have two wonderful kids to raise and take care of and have to push on. Thank you everyone that responded really made me feel better. Quote Link to comment Share on other sites More sharing options...
songcanary Posted June 16, 2011 Report Share Posted June 16, 2011 I really feel that any doctor, who doesn't think you are sick even after a positive tilt test, is an idiot. Remember, SOMEONE has to graduate at the bottom of the class.I waited three long years to get proof of a real live illness, and no one is going to deprive me of it. The very first cardiologist I saw said to me 'Well, with symptoms like that, no wonder you feel terrible'. It was such a relief I cried. This is not in our heads, don't let yourself slide down the slippery slope of insanity. From what I read, no one on this board wants to be unproductive and on multiple meds. A bit of a rant but I had to quit my beloved job last weekend so it's a sensitive subject right now Quote Link to comment Share on other sites More sharing options...
lieze Posted June 16, 2011 Report Share Posted June 16, 2011 (((songcanary))) I'm sorry : ( Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 16, 2011 Report Share Posted June 16, 2011 Songcanary, I'm sorry you had to give up your job that you loved! Quote Link to comment Share on other sites More sharing options...
ladyt Posted June 16, 2011 Report Share Posted June 16, 2011 Its so bad that so many of us has the same bad experiens whit health care, well the lack of that is...I fell that i have been running in to a brick wall for so many many years. When i finaly got my diagnose in 98 i though yeah i am going to gett som help and understanding. And no one will think me craxy anymore.. How very very wrong i was.Got back home, and all the cradios i called refused to take me as a patiens. And rest of the docs where the same. Trhoug lots of luck i finaly got a doc how was training to be a cardio, and in the end i ended up whithis mentor. But he is no expert on pots or dys, he is an pacemakert expert. And ust intrested in my fainting...So one ust feel so hopless and frustraited and lonly. terible alone. Trying to gett a lilte life, and understanding what its happening in my body. The docs blaming everytbing on pots, a condition they know nothing about. But i se the same docs when i have somthing more normal wrong, they are capebeal and nice. I think patiens like us makes them freak out and a bitt crazy. Cos they like to know it all. And hate when patiens like us comes along and confuses them..So all this bad experiens whit docs makes it stressfull for me to go to them. I try everythime to stay positiv and hope that this time, this time it will be difrent.This spring i did stubled along a curios doc. But she was an intern and not much she could do for me. But She tryed. If only the rest of the lot had this curiosety and open mind like heres...Hang in there all of u. I know how hopless, frustraited, angry, lonly etc lack of health care can make one feel.Its not u that are crazy, its them... Quote Link to comment Share on other sites More sharing options...
songcanary Posted June 16, 2011 Report Share Posted June 16, 2011 Thank you for the well wishes. It really means a lot. And I realize I'm not the only one who has given up a career. Hey, I don't even like roller coasters at the park, why would I like one in real life?? Hugs to all Quote Link to comment Share on other sites More sharing options...
lmt033167 Posted June 16, 2011 Report Share Posted June 16, 2011 I don't have pots...or at least I haven't been dx with it yet...been dx with many other things such as NCS, OI possible MSA, PN and suspected many other things and the "unknown" disease of well you don't look sick - that's great right? I had one dr tell me not long after surgery i couldn't be THAT sick because I put foundation on to go out to hide the redness from what my neuro suspected was Lupus; I didn't want people staring at my face it was embarrassing; I quit caring after that - it took 2 full min to slap some liquid stuff on my face - that makes me NOT sick? lolI've seen so many doctor's it makes my head spin, I've been told by every one my case is far too complicated and complex for them to deal with and there is nothing else medically they can do I just have to learn to live this way the best I can...then charge my insurance an arm & leg and send me out the door; pawn me off to another doctor or facility like vanderbilt...yeah i can go there but who's going to treat me on a regular basis? then my latest was the EP said my malignant heart arrhythmia's was caused by ANS issues...yet couldn't tell me what it was called and I can't find what would cause it and I just can't wrap my brain around that diagnosis...I think all the time did I do this to myself, did i make myself worse by something I've done or not done...certainly there has to be something or I'm crazy Quote Link to comment Share on other sites More sharing options...
lissy Posted June 16, 2011 Report Share Posted June 16, 2011 Hey everyone:)I don't post to too many post because I have caught myself becoming complusive and only focusing on HEALTH and nothing else...Anyway I had to reply to this because it just fits my current situation, I have had 2 counseling sessions and I am going to take a psych test because I have developed some pretty major phobia regarding Meds and foods and I have lost ALL trust and faith in Medical field completely, so far I had an old DX of GAD and major depression and just since going she said possible PTSD with the phobias, despite all those DX my BP and heartrate I know cannot be caused by a mental issue but I do know that the constant state of brainfog and disconnect,severe memory-loss I feel may not actually have to be caused by dysautonomia it could be PTSD and if I can get some improvements with those issues maybe I won't feel as bad...SO for this topic yes I have felt crazy at times and also wrong but my end thought on it is that I have many problems going on medical and mental and I am being openminded to have a better chance at becoming better and healthier in every way.Lissy Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted June 16, 2011 Report Share Posted June 16, 2011 I had one dr tell me not long after surgery i couldn't be THAT sick because I put foundation on to go out to hide the redness from what my neuro suspected was Lupus; I didn't want people staring at my face it was embarrassing; I quit caring after that - it took 2 full min to slap some liquid stuff on my face - that makes me NOT sick? lolThis cracked me up.... even though it is VERY sad that a doctor could even come up with it. I get red and hot with POTS so I wear foundation too. I must be OK!!! GOOD TO KNOW! Quote Link to comment Share on other sites More sharing options...
lmt033167 Posted June 16, 2011 Report Share Posted June 16, 2011 I had one dr tell me not long after surgery i couldn't be THAT sick because I put foundation on to go out to hide the redness from what my neuro suspected was Lupus; I didn't want people staring at my face it was embarrassing; I quit caring after that - it took 2 full min to slap some liquid stuff on my face - that makes me NOT sick? lolThis cracked me up.... even though it is VERY sad that a doctor could even come up with it. I get red and hot with POTS so I wear foundation too. I must be OK!!! GOOD TO KNOW!That's in my all time fav's of the dumbest things dr's have said to me...I laugh when I put on makeup now and say there; I have to be ok I'm putting on foundation. Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted June 16, 2011 Report Share Posted June 16, 2011 HA, yes, I guess I will be thinking of him when I put make-up on too! Guess we will just laugh and go on slowly getting better and looking GOOD with our make-up! Quote Link to comment Share on other sites More sharing options...
enko Posted June 17, 2011 Report Share Posted June 17, 2011 I haven't yet been diagnosed with anything including dysautonomia.. I sometimes think that docs here didn't even hear about it.. Yes, I do feel crazy sometimes.. I'm telling them one thing and they are telling me that nothing is wrong with me, no matter that my records show otherwise.. Songcanary hugs 4 U Quote Link to comment Share on other sites More sharing options...
Jlynn Posted June 21, 2011 Report Share Posted June 21, 2011 I never feel that I am crazy or wrong. I just get to the point where I want to scream due to the inept medical care I get.For instance, I had an endo appt. recently. I ended up seeing the NP instead of the doctor. I was trying to explain my my history, and then my worst symptom of flushing, redness and swelling. I actually started having an episode and was able to show him the hand swelling and redness, along with the blueness that they also get. He said it is most likely related to my POTS. I was sitting. I explained that I've had POTS for many years, but this flushing was just within the last year. It is still POTS related. And, he told me to go see my cardiologist for it. What, the one that said to drink a yogurt drink and go home????This is the level of care I am getting right now. Go to an appt., listen to some moronic explanations, and get booted out the door, while they be sure and write down the highest fee allowable.All of this makes me wonder what is happening to the quality of our healthcare. Doctors who don't want to doctor.I know what you mean! I've been experiencing the same thing for months now.The doctors I am seeing don't know what they are doing, so they pass me on to other doctors who play it off , or send me to other doctors who do the same thing. It is beyond annoying Quote Link to comment Share on other sites More sharing options...
enko Posted June 21, 2011 Report Share Posted June 21, 2011 Cross your fingers for me ppl - since GP sent me to psychiatrist (because "Neuros cannot prescribe SSRIs!"), I've sent an email to one that was recommended to me and asked her to take a look at my records. I just hope that she won't tell me that I'm insane.. But if she does, in the end I'll get that SSRIs after all, just in much stronger dosage.. Quote Link to comment Share on other sites More sharing options...
songcanary Posted June 21, 2011 Report Share Posted June 21, 2011 Really? Neuros can't? In the States any MD or DO can. Anyhoo, sounds like you're getting the hang of navigating doctors' waters. Best of luck with the upcoming visit. Getting the right meds is critical no matter how it is done LOL! Quote Link to comment Share on other sites More sharing options...
enko Posted June 21, 2011 Report Share Posted June 21, 2011 Songcanary you're gorgeous! She still didn't reply anything.. I hate waiting.. Quote Link to comment Share on other sites More sharing options...
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