I'm Really Bothered By The Experience...

[MomtoGiuliana]

That was a great film...one of my sisters has schizophrenia and it took years of worthless therapy and the wrong medications to get an accurate diagnosis. Unfortunately she reached a terrible crisis point before she was able to get the proper treatment. With medication she is well on the road to recovery and a normal and productive life.

Katherine

[goldicedance]

Thanks, Katherine and Rita, for writing so eloquently about SSRI's. I was taken back when I read about the reluctance to take SSRI's because of the label that might be applied to them. I started taking Zoloft when I was dealing with a terrible POTS episode, including terrible migraines. SSRI's are frequently prescribed for migraines, whether or not they might be related to POTS.

I would also wonder what a POTS-literate doctor would think if you refused to try an SSRI to see if it helps with POTS.

With POTS, it is so important to be flexible in trying different medications to help mitigate the symptoms.

Regarding your faint experience, if the faint took place immediately after you got out of bed after a night's sleep, it may be related to (1) dehydrated state from the night; (2) deconditioning from being vertical for the night; and (3) just getting out of bed and standing upright too quickly.

It is a good idea to keep water (V8 is even better) by your bedside to drink before you get up. If you are taking Midodrine or other POTS meds, it is good to take your morning doses (unless contraindicated) before you get out of bed. Stay in bed an additional period of time before your get up. That may help prevent faints.

Also, if you begin to feel bad while you are standing, it is important to sit or lay down. Don't push yourself into a faint. With many of us, we know the symptoms of feeling bad. For me, it is getting sweaty, clammy, lightheaded, etc. When that happens I sit down.

Also, if you are standing, it is good to cross your legs so that your ankles are pressing against each other. That position is called the "cocktail reception stance." It gets me through waiting in line in the grocery store.

Please cardiatec, try an SSRI. You will never know it works until you try it.

Lois

[cardiactec]

hi lois,

thanks for your reply.....

i have had such a difficult time, before being PROPERLY diagnosed with pots, in docs who were far from POTS literate quickly trying to shove SSRI and anti-anxiety meds down my throat when i knew that wasnt the problem at all.....i think the most bothersome thing in going through all of this has been being falsely accused of doing drugs (i have a heart rate of 200 and even after being diagnosed with pots and had the documentation to prove it to an ER doc, he told me that i should just "fess up" to doing drugs so they didnt have to waste their time in running blood tests), being anorexic (i have gastroparesis and have a hard time eating because of it), being depressed (cuz YEAH i was pretty upset with having to deal with feeling orthostatic symptoms every day and at the time, with no explanation), being anxious.......

i never want to go down that road again....as i said, call it pride, but i think i'd rather feel crappy than try and SSRI and see if it helps and then have people who ARENT pots literate nod their heads and say "yes yes, so you take an SSRI, she is just depressed"........i know all too well how the med field works, i work in it! )

you said, "I would also wonder what a POTS-literate doctor would think if you refused to try an SSRI to see if it helps with POTS." ..................i just spoke with my neuro after he mentioned trying an SSRI if i start passing out again after taking me off florinef and i told him my concerns of what i just mentioned above and he said "well i and others are very well aware that POTS/auto dys is the problem and not concerned at all with depression and/or psychological issues with you"..................i told him that was nice that they and others who are pots literate take me seriously, but that trips into the PCP's office, ER visits, and/or other docs visits with peopel who ARE NOT pots literate immediately see SSRI and then draw some pretty scary and off beat conclusions just by seeing that in your med file............my PCP has been pretty good overally, and at one point he wanted me to see a councelor just because iwas really have a hard time dealing with the pots flareups (not cuz he thought i was clinically depressed) and he was smart enough to tell me that he wouldnt put that (the seeing a councelor part) in my med record because even HE knows that people would speculate just from seeing that in the med file...............so i know it's not just me that thinks this way, but when a DOC says that to me, you know there is a problem with med personnel just writing everything off as psychiatric or seeing everything in that light, especially when seeing things like "SSRI" in your med file...................

i am glad the SSRI has helped you and i dont look down on anyone who takes SSRI whether for depression or something else that it seems to help with, i just personally have a problem with it -- seriously a bit scarred from all the docs who treated me so poorly before being properly diagnosed.....ya know, it is really sad that there is so much anxiety, anorexia , depression, drug use, in the first place that the first thing that runs through a docs mind with ANY person they meet is just that........sad........

as for the three things you listed as possibilities of what could have happened with the faint episode, i have never had a problem in the morning, which is bizzarre i know since most pots patients have difficulty in the morning, when first getting out of bed....that is not a trigger for me, has never been actually..........more or less things like being at work and standing a lot, after getting out of the shower i feel gross, grocery shopping, standing up a lot in the kitchen to make a meal, etc, stuff like that............generally though, even though i dont have probs when getting out of bed, i tend to drink 12 oz of water before getting out of bed and taking my meds as well 15 mins before getting up...................so i dont think the episode had anything to do with that................not sure what it was caused from...

thanks for your response....

HAPPY EASTER!

Thanks, Katherine and Rita, for writing so eloquently about SSRI's. I was taken back when I read about the reluctance to take SSRI's because of the label that might be applied to them. I started taking Zoloft when I was dealing with a terrible POTS episode, including terrible migraines. SSRI's are frequently prescribed for migraines, whether or not they might be related to POTS.

I would also wonder what a POTS-literate doctor would think if you refused to try an SSRI to see if it helps with POTS.

With POTS, it is so important to be flexible in trying different medications to help mitigate the symptoms.

Regarding your faint experience, if the faint took place immediately after you got out of bed after a night's sleep, it may be related to (1) dehydrated state from the night; (2) deconditioning from being vertical for the night; and (3) just getting out of bed and standing upright too quickly.

It is a good idea to keep water (V8 is even better) by your bedside to drink before you get up. If you are taking Midodrine or other POTS meds, it is good to take your morning doses (unless contraindicated) before you get out of bed. Stay in bed an additional period of time before your get up. That may help prevent faints.

Also, if you begin to feel bad while you are standing, it is important to sit or lay down. Don't push yourself into a faint. With many of us, we know the symptoms of feeling bad. For me, it is getting sweaty, clammy, lightheaded, etc. When that happens I sit down.

Also, if you are standing, it is good to cross your legs so that your ankles are pressing against each other. That position is called the "cocktail reception stance." It gets me through waiting in line in the grocery store.

Please cardiatec, try an SSRI. You will never know it works until you try it.

Lois

[Patricia Gallup]

I am sorry to say cardiactec, I feel that statements you are making about ssris widely contribute to the stigmas attached to mental illness and that truly saddens me. I hope you realize that anxiety, anorexia, and the others you mentioned ARE ALSO DISEASES like POTS, and perhaps doctors aren't ALL the "she must be depressed or anxious" diagnosers that you are implying, maybe they are trying their best to help someone with a hard case.

For those that say they'd never ever try an SSRI, I agree with those who say they'd rather TRY to feel better, and as Katherine said MANY do feel better, than have one, or a few, medications listed on their history they are using off-label.

Please explain to me why all the top ANS docs in the WORLD prescribe these meds, do they really think we're all anxious and depressed? I think not, I think it's because what happens in our bodies happens to mirror what happens to people who have panic attacks. And even IF our physical ailments cause us to have depression or anxiety WHAT IS SO WRONG WITH THAT?

My daughter and myself have tried the SSRI's and my daughter the SSNRI's without success, but that doesn't mean we believe the docs think we're anxious and depressed, it means we wanted to feel better, and if one would've worked I would gladly take it daily.

We also seek counseling for living with chronic illness and could care less that it's in our medical records. We are sick, and seeking help to learn to cope and ways of getting through daily life in a society where illnesses are thought of as weakness is something I'm PROUD to have in my medical record because it shows the great lengths I'm willing to go through to be as functioning and healthy as I can be. It actually makes me wonder from a psychological standpoint why some are so paranoid about what's in their medical record, and as I said just really sad that sick people attach stigmas to other sick people.

Cardiactec you have even said you fear the next time passing out, don't you find that to be similar to being anxious? My daughter has been passing out since she was 8, she has never stopped living life because she FEARS something that might not happen on any given day, and if she does pass out, it happens, she has POTS.

I am just so baffled that someone "who works in the medical field and knows how it works" would make such statements that are so negative to people who deal with depression and anxiety, as well as those who take those meds to help with their POTS. I am shocked that YOU seem to be one of those who is NOT "POTS literate" if you believe they are "throwing anxiety and depression medications at any ailment they don't understand" since these medications are in studies to prove they work for POTS, AND the most "POTS literate" docs in the world prescribe them daily.

My daughter and I use Procrit OFF-Label with GREAT success for our POTS, I wonder if you have any idea how many tens of millions of dollars it takes to get FDA approval for an add-on usage to a medication? Would you not take Procrit because you fear being labeled as a cancer patient? Because that is a disease just like anxiety and depression is? I am just personally glad that my family shares the philosophy that we'd rather try ANYTHING to FEEL BETTER than worry what others think.

[anna]

Could you give more on info on that eds website?

Michele

Hello Michele the web site in Q. is: www.ehlers-danlos.org hope it might be of use.

anna

[cardiactec]

several things:

you say, "I am sorry to say cardiactec that statements YOU are making widely contribute to the stigmas attached to mental illness and that truly saddens me. I hope you realize that anxiety, anorexia, and the others you mentioned ARE ALSO DISEASES like POTS, and perhaps doctors aren't ALL the "she must be depressed or anxious" diagnosers that you are implying, maybe they are trying their best to help someone with a hard case."

i dont think i slammed anyone who deals with anxiety, depression, anorexia, etc at all....and if it came across that way i am sorry. and also, just for the record, i know very well that anxiety, depression, anorexia, drug use, are problems that stem from disease as well, just like pots, unfortunately people who have such diseases or problems are shunned by people in the medical field, and terribly, this has been MY experience working in the med field and i NEVER WISH to be treated like that, EVER, very sad...and i am completely sympathetic and heart broken for people that have to deal with the aftermath after having been YES PROPERLY DIAGNOSED with such a problem.

actually, i have TOO MANY TIMES, spent MUCH TIME with patients who have been treated like crap from med personnel, after having them being PROPERLY diagnosed with pyschological problems/disturbances......actually, i worked doing some social work for awhile and it is sad to see how some of them are treated......so much in fact that THIS IS WHY I DONT WANT THERE TO BE ANY GRAY AREA of MY DOCS understanding of what is going on with me -- because i REFUSE to get treated how those that both DO IN FACT have such problems OR how those are treated that DONT HAVE those problems but are labelled that way anyway, labelled WRONGLY either for making what is BLACK AND WHITE more GRAY by HAVING DOCS THAT ARE NOT AUTO DYS DOCS, WHO DONT HAVE A CLUE ABOUT ANY OF THIS, see SSRI or counseling in the med file....................once again, been there, done that.......

i was implying how i was treated, which was very very very very poorly and it made me very upset that docs would make such false accusations about such serious things -- such as drug abuse, anorexia........it wasnt fair to me to have to feel so sick and to not get any help for it, but to LITERALLY be shunned by certain medical personnel..........it was a place in my life, an experience, and a very negative one at that, that i do not wish to go through again......and because of that i wont give anyone even the slightest suspicion or entertain a second thought in ANY mind of any other problem OTHER than the REAL problem.

you said "Please explain to me why all the top ANS docs in the WORLD prescribe these meds, do they really think we're all anxious and depressed? I think not, I think it's because what happens in our bodies happens to mirror what happens to people who have panic attacks. And even IF our physical ailments cause us to have depression or anxiety WHAT IS SO WRONG WITH THAT?"

I never said that ANS docs were wrong to prescribe such a med, if they think it works, and if it does, than great. i was commenting on HOW DOCS THAT ARE NOT AUTO DYS DOCS - as i said, ER DOCS, some PCP's, etc, dont have a clue about what auto dys is and its pathology -- so when they read down a list of meds you are on and see SSRI, they assume one thing and one thing only.............once again, this gets back to being falsely accussed, being shunned, and on top of that having any chance for proper treatment from occuring...which leaves me feeling sick, not having the problem addressed, because people are quick to assume that it is just something else. this would be the same, even without a psychological diagnoses that they were giving. for example, if i KNEW i had a UTI but the doc was treating the problem as ulcerative colitis, my problem still remains.

i seek counsel as well by the way, but once again I keep it out of my med record because too many docs, ONCE AGAIN, cant get their mind off the thought that if you take an SSRI or seek counsel that you must in fact just have psychological problems..................this is why my PCP, without be even saying ANY of this, has kept that out of my med file....because both he and i know quite well how unfortunately people draw conclusions that are very wrong.........all i want is to be taken seriously, and finally i have been, after countless years of going through tough times in being blamed for shoving my finger down my throat or doing drugs.....does this sound like something that YOU would want to be blamed for?? certainly not.

you said "It actually makes me wonder from a psychological standpoint why some are so paranoid about what's in their medical record, and as I said just really sad that sick people attach stigmas to other sick people. "

probably because they get treated like crap by docs who dont know better than to just write them off with psychological manifestation when the patients knows quite well that they are NOT SICK from psychological reasons, but from physiologic reasons. finally i have found some docs who believe this for me because they have actually PHYSIOLOGICALLY seen proof with various tests that something isnt right, and not it being PSYCHOLOGICAL. it has nothing to do with paranoia, but everything to do with keeping everything black and white and not graying the med record to some docs when they read "anti-depressant" or "anti-anxiety".....you even said yourself "what happens in our bodies happens to mirror what happens to people who have panic attacks." ...............some docs (and no, not ANS docs, just typical joe shmoe that we all have to be followed by (PCP, GYN,etc) are just so ignorant just to assume that pots and panic are the same thing, so why give them more suspicion by having them see "anti-anxiety" med or "anti-depressant" in your chart? also, medicine it too confusing to begin with (not a whole lot is understood about the human body) so why add to the gray area? i think the biggest part of ANY of our experience with auto dys has been confusion by docs as to what exactly is going on...........this is another reason i dont take SSRI - because it adds confusion/false ideas to docs, mainly in ways that they go about treating the underlying problem, who dont know much about POTS. if you dont have panic disorder and a doc prescribes you anti-anxiety meds, it can actually do you more harm than good.

you said, "Cardiactec you have even said you fear the next time passing out, don't you find that to be similar to being anxious? My daughter has been passing out since she was 8, she has never stopped living life because she FEARS something that might not happen on any given day, and if she does pass out, it happens, she has POTS. "

i do fear passing out again....this is a normal thing to feel with passing out as i have just come to learn personally, but NOT the/my primary etiology. if it didnt scare someone to pass out, than they wouldnt be normal. your daughter may also have gotten a grip or handle on how it FEELS to pass out if she has passed out since 8 yrs old. HOWEVER, this is the FIRST TIME from 6 years of dealing with auto dys that i have ever experienced passing out and i have every right to feel scared for it, and every bit of normalcy for feeling such feelings. by the way, just to shed some light on my fear of the experience, you make it sound like i have stopped living my life since passing out as you explained your daughter not being held back in life by her experience with passing out.............just to inform you, i worked a 12 hour shift yesterday, and yes was scared that i might pass out at work, but i did not NOT go to work because of the fear/anxiety...............so i HAVE NOT stopped living life because of it. please dont jump to conclusions so quickly when you dont see the entire picture.

you said, "I am just so baffled that someone "who works in the medical field and knows how it works" would make such statements that are so negative to people who deal with depression and anxiety, as well as those who take those meds to help with their POTS."

you missed my last comment to lois and i quote "i am glad the SSRI has helped you and i dont look down on anyone who takes SSRI whether for depression or something else that it seems to help with, i just personally have a problem with it -- seriously a bit scarred from all the docs who treated me so poorly before being properly diagnosed."

to each his own.....but know that i have MUCH compassion and sympathy for those that both take SSRI for it's primary purpose AND for those that take it off label for perhaps some other way that it can benefit a person.

you said, "I am shocked that YOU seem to be one of those who is NOT "POTS literate" if you believe they are "throwing anxiety and depression medications at any ailment they don't understand" since these medications are in studies to prove they work for POTS, AND the most "POTS literate" docs in the world prescribe them daily. "

i am in the CARDIOLOGY field, not neurology field and have NEVER EVER said anything about being pots literate. personally i dont want to be literate to ANYTHING in neurology, it's just too confusing! to be honest, i dont think there ARE a whole lot of people who are TRULY pots literate or else none of us would be on this forum telling each other about how we dont feel well, or about passing out, or about feeling nauseous, dizzy, light-headed,etc.................i think a lot of the meds they utilize are based on process of elimination......welcome to the world of medicine.......if one med doesnt work, they try another, and another, and another......yep even "off label" meds. i dont accept that as part of my medical care and once again, to each his own........if it works for you, it works........i'd just assume do what i feel is best for me...........

i'm sorry if i offended you in any way. this is all so very hard for all of us to go through, being labeled or not..............

i wish you well............

if you care to understand where i am coming from, i will post below something i wrote a few months ago about my experience with this...................it was a letter that my doc wanted me to write to him about "what pots means to me".....i didnt paste the whole letter, because it is fairly long.....but this will give you some insight of my journey.....

-->

take care.

================================================

You asked me to write you a letter regarding what POTS means to me. I must first start by explaining to you what POTS MEANT to me and presumably those that I sought for help for my symptoms, before it was ever recognized that my symptoms were all due to autonomic dysfunction...

"Anorexia", "Eating disorder", "Depression", "Anxiety", and "Illicit drug use" - all false speculations, false ideas, and false allegations that somehow all had been deemed the causes of my unexplained symptoms and you ask, "What does POTS mean to you?"

At first, it was a guilty verdict. It was supposedly something I could avoid, something I was told I could just "turn off" by thinking happy thoughts or taking prozac, something I could prevent if I supposedly stopped this inconceivable falsified notion that I was doing drugs or sticking my finger down my throat. Even after the diagnosis of POTS was made I was told by an ER physician that my heart rate of 220 was from illicit drug use and not to try and argue with him about his suspicion (the drug use too they also suspected the cause as to why I was so thin appearing.heh...if it wasn't an eating disorder to cause the weight loss/nausea post eating problem, it was from drug use). One time I was told to just "fess up" about using drugs so that the doctor's wouldn't have to go through the lengthy process of blood work to check for drugs in my system. Mind you, I didn't ask or initiate any cardiac workup for any tachycardic event because I never had/felt palpitations and yet still, this was my fault.

A guilty charge was read as me being the cause for my symptoms. As fast as I was trying to run away from the horrors of my daily symptoms, even faster I had to run, making a detour from the place and people I thought would help to diagnose and treat whatever it was that was ailing me, ravaging the normalcy of what I knew life to be like before getting sick, only replacing it with captivity. Sick people seek a medical doctor for answers and treatment for their sickness, not a prosecutor to be read a guilty verdict because of their sickness. And you ask, "What does POTS mean to you?

This is one of two letters I have written since dealing with POTS. My first letter I wrote to God, after two years of feeling so miserably sick, of doctor's entertaining crazy ideas of eating disorders and drug use as the cause for my nausea/other symptoms, my thin body habitus, and even the fact that I was very young and yup, even that I was also a woman (because young people don't get sick and all women are just hereditarily marked with a ''crazy'' gene. is this what they teach you in med school???). So there were three strikes against me: age, gender, and body habitus. These three pieces of evidence led to an easy prosecution and so it was, guilty as charged.

I started writing my letter to God, explaining how I couldn't deal with how I was physically feeling anymore, that I couldn't deal with all of this being summed up as some "psychological" problem because I knew it wasn't, that I couldn't deal with nobody believing me in how I was feeling. I wrote out of desperation, a plea for either mercy from the symptoms I was having or for a revelation to be imparted on someone so that I could start getting some relief from my symptoms and possibly some answers to what was going on physiologically.

Thankfully that first letter to God, written 4 years ago is followed today by a second letter, now finding after two years of needless suffering, that there are still good doctor's who care and intently listen to try and find the TRUE cause of what is ailing their patients and not to just write them off as psychiatric. I now know that even if I can't get complete relief of symptoms, I can get relief of the POTS triggered emotional roller coaster ride because there are doctor's who practice medicine above and beyond standard patient care. So a thanks, in advance, to you, Dr.-----, and the other's that acknowledge POTS as both a REAL and debilitating condition, willing to do all that can be done to make this journey an easier one to walk through. I couldn't imagine walking through this the way I had to four years ago, with people just pointing fingers at me, like this was all my fault.

After getting the POTS diagnosis, there was at least some closure in knowing that I wouldn't be blamed for my symptoms but still, my limitations/symptoms took a toll on me emotionally, and still do. I have just recently allowed myself not to be fearful of showing my frustration or upset with my physical limitations or how I feel physically due to POTS.

For a long time, I stripped myself of any 'down and out' emotion I was feeling due to how I was physically feeling from POTS. I was so scared and still am to some degree to allow any dismal emotion to show towards how upsetting it is to have to live with this chronic, physically limiting condition. I am scared to get upset over/about my POTS because at the beginning of all this, all was regarded as behavioral/psychological as the cause for my symptoms.

I can't deny the thoughts that if I fortuitously showed one ounce of sadness or frustration from this condition to any medical personnel, that I'd be read the guilty verdict again, that this would once again be viewed as all emotional/behavioral distress, and that I'd be left to fend for myself. So for a long time, and even to some extent presently, I have a hard time letting people see how this condition effects me on an emotional level because the blame for all my symptoms at first was erroneously assumed just that, emotional/behavioral/psychological.

So not only do I fight the physical limitations of POTS, but I feel as though I must fight off the emotional low's that are instigated by POTS flare-ups/symptoms for fear of someone saying "ah ha, she cried, so it must not be POTS but emotional/psychological distress". It's definitely more baggage than I should have to carry, to have to worry about once again, something that I am supposedly doing (self-induced vomiting/drugs) in being the etiology behind my symptoms. I think I was so devastated by how I was treated when nobody knew what was going on that it still effects how I choose to talk/discuss with people in how POTS effects me. Even to the lay-person, if you explain POTS to them as "autonomic NERVOUS system disorder", all they hear is NERVOUS and the primary symptom "fast hear beat". Immediately they think you are just a nervous, panic-stricken wreck. So you ask, "What is POTS to you"? It was at first, a postulated falsified identity of being a, anorexic drug addict, a guilty verdict.

POTS, many days, feels like playing Russian roulette. I never know when the loaded bullet of debilitating symptoms will fire, or if just firing blanks. It means me having to decipher whether my plans for each particular day will cause a flare-up of symptoms or if no matter what it is I plan, somehow the loaded bullet full of symptoms will be triggered. Some days there is no warning. I will wake up feeling fine and the next minute, I'm nauseous, I'm weak, I'm tired, I'm dizzy.

POTS is a constant game that I am forced to play. Unlike a board game where the game both begins and ends by a mutual understanding from each game participant, instead of me having any say, POTS is the determiner of when the symptoms both starts and ends. Every morning is a guessing game with how I will feel throughout the day and what event or activity might trigger my symptoms. Usually my days are set up according to how the POTS is behaving for each particular day. It becomes a sick and twisted game in discerning how to plan the day AROUND POTS and not WITH POTS, how to determine my physical capabilities for the day without having to recognize or be aware of what I might not be able to do or accomplish because of POTS. Do I move the game piece forward and gamble on the chance of feeling really sick? Do I move back to avoid being symptomatic? Do I move at all? I have come to find that in any of the three options in this crazy POTS game, that any option will eventually, at some point throughout my day, result in POTS symptoms not allowing me to pass go, going straight to jail, not collecting 200$, and missing my turn of rolling the dice with a second chance for a different outcome in life aside from feeling controlled by POTS symptoms! Sometimes I ask myself who is winning this game, am I or is POTS? POTS seems to have the upper hand.

I have learned to play like a straight shooter by just playing the cards I have been dealt and hoping that my hand ends up being higher than the card hand of POTS. To once again capture the fullness of life, to not be cheated by symptoms, not to lose my turn in having the social opportunity of meeting someone, having children without sending my heart into a 500 beat tachyarrhythmia, work full-time with all it's physical demands, to sometimes be able to go go-go-go-go and not end up feeling sick from it, to ultimately conquer, win, and knock POTS off the game board of life! So you ask, "What is POTS to you?" - POTS is a head-trip board game that I must win!

Life has greatly changed since POTS. It's always planning out the day for two, for me and for me with POTS. Some days I feel like I can escape POTS symptoms, to be my own entity, eliminating the feeling that POTS defines who I am and what I do. Other day's the POTS symptoms annoyingly goes with me, wherever I go with whatever I do - to work, to school, to social gatherings. These days must be analogous to caring for a child while ''on-the-go'' in having to pack up all the emergency anti-cry/anti-boredom essentials of a diaper bag stuffed full of toys, cherrio's, and coloring books to pre-occupy the child all while the guardian try's to accomplish what needs to be accomplished with their agenda. Planning for POTS when symptomatic is similar. I must carry the emergency anti-symptom essentials both physically in-hand and cognitively in-mind of things that will hush up and keep pre-occupied the easily tempered POTS symptoms while I try and accomplish and carry out my agenda without feeling symptomatic. Yup, these essentials to include, but not limited to, salt packets, bottle upon bottle of water, making sure that wherever I go there is somewhere to sit down if need be, anti-nausea meds so I don't puke on myself, beta blocker meds so my heart doesn't run off ahead of me, and compression stockings so I don't float away by the blood flood pooling in my legs. It's anything and everything to try and hush up and distract the annoying, screaming, life-altering and temper tantrum symptoms of POTS so I can have my life.

So you ask, "What is POTS to you"? POTS, as you have learned thus far, is not only a falsified identity of being an anorexic drug addict and also a head trip board game, but also a full-time babysitting job.

[MightyMouse]

while I understand why you're not considering that class of meds for you... Sorry, but from my vantage point, you have a skewed view about SSRI's.

Any doctor or other "professional" who thinks I'm on lexapro for depression gets a verbal lashing for their assumption and a lecture about how SSRI's can have a stabilizing effect on the central nervous system and autonomic systems--as per Dr. Grubb's letter to me about my case. As someone who benefits from an SSRI with regard to my gastric functions, I can attest to the benefit fo this medication for me--making sweeping generalizations about a class of drugs because of the "stigma" is, in my opinion, a mistake in logic. My suggestion is to rule out medication options based on their effect on your OWN PERSONAL RELIEF or NON-RELIEF OF SYMPTOMS. Suggesting that folks avoid a group of potentially helpful medications based on stigma in ANY community is problematic... Many of the members here have a hard enough time just taking ANY medication and in my opinion, it's not helpful to suggest avoid a medication based upon public opinion rather than science.

As for struggling after fainting; well, sadly, now you completely understand what those of us here call a "crash". It's both a literal thing when you hit the floor, but then continues with symptoms of complete exhaustion days afterward.

Nina

[cardiactec]

Hey Nina,

I'm glad you have benefited from SSRI and glad to see you put docs in their place when they draw inaccurate conclusions about you being on an SSRI.

.... perhaps if docs hadnt been so cruel to me 6 years ago by being so hurtful in accusing me of things i wasnt doing/experiencing, i would be willing to try SSRI to see if it helps. at this point in my life, i'm still having a hard time getting over how horrible an experience it was to be treated so poorly................maybe at some point down the road, i'll get over the experience enough to not let what others think effect me so much.....but for now, i am very cautious and leery. one day at a time..

Everyone has their own monsters to deal with....this just happens to be one of mine............

i never meant to hurt anyone by any comments made....

[MightyMouse]

I'm not hurt, just wanted to share that there is another viewpoint and that patients can impact their doctor's views by speaking up for themselves. If the doctor can't handle it, or wont take your knowledge into account, in my opinion, that doc should be kicked to the curb in lieu of a doctor who actually wants to learn somthing new and believes patients have something to offer.

[pat57]

A pharmicist and my Doc have oked St. Johns Wort for me because Prozac interfers with my sleep. You might try that.

[doctorguest]

This is an interesting discussion. Cardiactec, you are obviously an intelligent person who have done very well in terms of functioning with POTS. I am sorry that you went through a bad experience with doctors before getting a proper diagnosis. However, I do think that some of your statements and assumptions about SSRIs and physicians in general, which as you clearly stated are based on the mistreatment by the medical personnel prior to your diagnosis, are misleading to other people who may be struggling to find the right treatment. You stated that if one doesn't have a panic disorder and is prescribed an anti-anxiety medication by a doctor, that it can actually be more harmful than helpful. This is simply not true.

As a doctor, I can assure you that SSRIs, as well as other classes of anti-anxiety drugs, are used in many conditions and situations that have nothing to do with anxiety or depression. For example, Cymbalta, an SNRI, has been recently approved by FDA for treatment of diabetic neuropathic pain, a very painful condition caused by diabetes. SSRIs have been used to treat sleep disorders, certain GI problems, headaches, pain conditions and autonomic dysfunction. Thus, panic disorder is just one of the few conditions where SSRIs are utilized. Can they be harmful? Like other medications, these have their own side effect profile, but if prescribed by a doctor who understands how these medications work, no danger should come from a trial of SSRIs.

As for the stigma attached with the use of SSRIs or counseling from a psychologist, well, this is where everyone, doctors and patients, should do their part in NOT perpetuating it further than it already exists. Not all doctors are judgemental when they see an SSRI on your medication list. In fact, it has become so widely used for various conditions that many doctors do not automatically assume that you're anxious or depressed when they see it as part of your medical record. Speaking of the medical record, I think that you may be too concerned about what's written in your medical record. It sounds like you found good doctors to work with now, so why is it so important to hide the fact that you're seeing a counselor to help you deal with a chronic illness?! I think by suggesting that this information be hidden from your record, your PCP had actually perpetuated the problem of stigma associated with psychiatric disease, not to mention heightened your own fears of being stigmatized.

Knowledgeable and caring doctors will not jump to a conclusion that you're anxious just because they read that you're taking an SSRI or seeing a counselor in your medical record. They will ask questions and try to understand your situation objectively. If this is not the case, then change doctors until you find a good one. Conversely, if you're seeing an arrogant doctor who doesn't care, they can still think that you're anxious despite your record mentioning no SSRI or counseling, so really it doesn't matter what your record states either way.

Starting or abstaining from SSRIs is a personal choice that you can discuss with your doctor, but refusing to try a medication that has potential benefits on the premise of false assumptions, fears of societal views, or simply being misinformed can be detrimental. Modern medicine and patient education have come too far to afford negativity and dismiss a potentially effective, multi-purpose drug because it happens to be also used in psychiatry.

[Rachel]

Hi Angela,

Sorry I'm so late to this topic. I've been reading, but just unable to keep up with posting lately.

I was sorry to read that you've started fainting. It can certainly be a difficult experience - painful, embarrassing (depending on where you are/who sees you), scary, and physically exausting. I hope that it doesn't continue for you or interrupt your life and work too much. Be safe and careful.

Has your doctor suggested Midodrine? Or have you tried it in the past? It is a vasoconstrictor. Perhaps it would work for you and then you wouldn't even have to consider SSRIs. Ultimately, the decision is yours to make. If you aren't comfortable taking an SSRI, don't do it. You know the doctors in your area and you're familiar with the ER there. Some doctors can be insensitive toward patients on SSRIs. If that isn't something that you want to deal with at this point, then I think that your decision to not take an SSRI is just fine. Maybe you can try some other meds first. If those don't work, you can always consider an SSRI later on. I like Nina's idea about lecturing the "professional" and giving him an education on SSRIs!

Though I don't know your situation specifically, I do understand cruel and hurtful doctors. I think sometimes doctors get that way with patients because they're embarrassed that they can't figure out what's going on. So they lay into the patient as if it were the patient's fault. I'm sorry you had to experience life in the hands of a cruel doctor. Like you said, take it one day at a time. It's okay to be cautious. Maybe someday your caution will lead you toward trying an SSRI. Meanwhile, it's okay to not try one. There are other treatments too that can be tried first!

For the record, I'm not against SSRIs as treatment for POTS. I have even tried a few myself for POTS treatment (though they never worked). And I think you made it clear in your posts that it is good that some people can try, use, and benefit from SSRIs. After all, you can't argue evidence that it works for some patients! But it is an individual's decision about whether or not a treatment plan is a good option for them personally.

Wishing you better days ahead. Take care of yourself.

Big hugs,

Rachel

[yogini]

I just wanted to add two thoughts. First, many, many people on this forum take SSRIs for POTS. Yet in all my time on the forum (and all the complaints about doctors), I've seen very few posts about being stigmatized for using them. This does not seem to be a major issue.

Secondly, I can see how doctors could speculate that we have a mental illness before we are diagnosed. But once we are diagnosed with POTS, we can show our doctors medical articles about how SSRIs are used to treat POTS and/or get the prescribing doctors to speak to the other doctors. If the other docs still think your issue is mental and not physical, then it probably means it's time to find a new doctor. These points are not necssarilty meant to influence any particular person, but thought they should be raised.

[cardiactec]

Hi,

doctorguest,

you said "you stated that if one doesn't have a panic disorder and is prescribed an anti-anxiety medication by a doctor, that it can actually be more harmful than helpful. This is simply not true."

anti-anxiety meds can be harmful in that they are HIGHLY addictive. that was what i was referring to in that they can do harm to someone who doesnt have panic disorder who is prescribed such a medication.

I'm glad that SSRI can help with conditions other than depression/anxiety. I just personally wont take such a med for reasons already stated.

you said, "It sounds like you found good doctors to work with now, so why is it so important to hide the fact that you're seeing a counselor to help you deal with a chronic illness?"

Just because I dont want it in my medical records for potential future docs to question or be concerned with when it comes to my primary diagnoses of gastroparesis, EDS, POTS. obviously if i really felt there was such a terrible stigma that came with seeing a psychologist, i wouldnt have just told everyone on this forum that i see one! there is no shame in that. however, once again, I DO keep it out of the medical record because THERE ARE docs who are WAY TOO EAGER to call it a day in telling their patient that everything that they, as a doc, cant explain is from depression or anxiety....it's like their scape-goat and it makes me sick.

anyway, thanks for your reply. this is all a matter of personal experience and i hope everyone understands that. I shouldnt of ever mentioned anything about SSRI, actually i was simply looking for support from the people i know understand this condition best, better than any doc/counselor. .........this post was merely to describe a first syncopal experience, and to explain my fear of the event and i'm sorry it led to all of this...

no one should be misled here by seeking out treatment options, yes even SSRI, for their symptoms. please know that everything i said was based solely on some terrible experiences with past docs and not based on SSRI being a "bad medication".....

[masumeh]

this is a sensitive topic, it seems...and for many, an important one. Just wanted to add a point about the "record" issue. Have a close friend with GAD, PTSS, and it seems hypochondriasis. While she does often seek medical attention for "physical" sensations which are overblown due to her anxiety disorder, every time she enters the doctor's office, they should take her claims seriously and investigate them properly. She goes home with a bill of health, totally unconvinced that she does not have some kind of complex disease. On to the next doctor, after reading about the symptoms and becoming even more descriptive about her "sensations". X-rays, blood tests....clean bill of health. Ok....now she's on to the next "disease" that a friend or recent news report brought to her mind. The cycyle begins anew. She's healthy, other than her pscyhological disorders. I know how debilitating her disorders are....they are much worse for her life than any of the trivialities she claims in doctors' offices. But the one doctor she refuses to see (until she is completely hysterical and hellucinating, etc.) is a psychiatrist....the one doctor who could actually help her. I think it's probably plain to anyone how this would get tiring for the medical doctors, and expensive for insurance companies, and how there should be some kind of a solution. But at the same time, she does occasionally have valid physical complaints. Then, it's "The boy who cried wolf". Once she had an allergic reaction to a drug/medication, and was initially denied treatment due to the fact that her symptoms were immediately labeled "an anxiety attack". As the problem progressed, the allergy became clear and doctors started to treat her. Just wanted to mention this story to show both sides of the stigma....the truth of it and the falsehood of it. She does have a valid disease, and should seek treatment, but from the right doctors (i.e. psychiatrists rather than primary care or other doctors). But her abnormal behavior in seeking medical attention for imagined symptoms, although this in itself is a disease, is ultimately disruptive to her medical care. Probably, since the process is much like that of investigating a rare disease or "mystery" illness, her behavior (and the same behavior that many others in her mindframe perform) also disrupts the quality of care, attention, and seriousness given to truly physically ill patients who are yet undiagnosed (with POTS or whatever else the medical world is not aware enough about).

[yogini]

I am not sure why people are attacking one another personally here. I for one am glad that this topic is being discussed - it doesn't come up often and I certainly find it more interesting than many of the topics that keep reappearing. I'm not a moderator, but if there are people in the POTS community that are uncomfortable taking SSRIs or other meds then they should feel free to express themselves here. These feelings need to be expressed and discussed.

I don't think there is anyone on the forum that has so much influence as to discourage someone from taking a med by expressing their opinion - if there was such a person, it would be one of the moderators or veterans who've been here for years.

More than anything, I am glad to see that so many people feel so strongly about using all available resources to get better. I am glad to see the strong reactions to the post and relieved that most of us are of a similar mindset. I don't think its feasible for people (other than perhaps the mildest cases) to treat POTS naturally. I think those who don't use all available meds are doing themselves a huge disservice, but that's my opinion. I think the strong reaction here is in part because we care about one another and want to see each other get better.

[Guest tearose]

I am kinda guilty rita, my protection armor came out...for exactly that reason.

It is not like me to direct a comment, I just think the name "doctorguest" for the newbie without any background was an indirect attack and I want to keep the field neutral too.

[Michelle Sawicki]

Okay guys, this is starting to get out of hand. Please use your own private email if you'd like to continue this conversation.

Thank you,

Michelle

[MightyMouse]

I just wanted to say that our new member, doctorguest is a medical doctor who cares very much for dysautonomia patients and specializes in treating them. This doctor has helped DINET out A LOT and we are grateful for that... and appreciate the participation of all members here, new and veteran.

Additionally, please note that Michelle and I have deleted and/or edited several posts within this thread in order to follow forum guidelines and/or at the author's request, so if some of the subsequent replies don't make sense to you, this is why.