I'm Really Bothered By The Experience...

[cardiactec]

Hi all,

well it's the day after passing out for the first time and i am really having a hard time still, both physically (exhausted) and mentally/emotionally..........

..I have literally been scared to stand up and/or stand still since what happened yesterday with me passing out..........the experience has really traumatized me............i had no idea passing out was THIS extreme, that it felt so bad.....

......I have been crying basically all day because passing out yesterday is literally all i can think about and how scary it was to feel my HR so so so slow and forceful in my chest like that, feel so so SOB, such chest pain, so sweaty, so nauseous...........i am really struggling with this................

to those that pass out or have passed out, have you had such a hard time with it?

the scariest part, the part that i just cant get out of my head was just how SUPER SLOW and forceful my heart rate was, how prominent the sensation in my chest, and how i STILL felt like passing out even after i was already lying flat................i dont want to go through that again and really pray it was a fluke thing........

i am still so so so tired physically and have been anxiety stricken all day because of the experience.

i completely empathize and sympathize to all of you who have to deal with passing out on a regular basis. *HUGS*, *PEACE*, AND *ENDURANCE* to you all.

[MomtoGiuliana]

So so sorry about how you feel. There are so many symptoms with this darn condition that can be traumatizing. I know I said I "don't faint"--but the truth is I have not fainted for a long time. When I was your age--mid-20's--I had several episodes of fainting. At the time I was undiagnosed and my symptoms were otherwise mild. But I can remember it was very scary and awful feeling. Hopefully it will be a fluke or very rare thing for you too--or you will "grow out" of it--like I seemed to.

There are medications that help people who have NCS/NMH--if that is what you have in addition to POTS. Remember that for most people, OI becomes mild and manageable with time. Don't give up hope.

Hugs and take care,

Katherine

[morgan617]

Yes. I think every time some new ugly thing rears it's head, we all feel like we have been traumatized yet again with one more new thing.

It's scary, frustrating, annoying and feels like an emotional roller coaster ride. Anytime my heart feels like it's doing something I haven't noticed before, it can be scary and anxiety provoking. Right now I am dealing with a fall that has done something to my pacer and no one will listen. So I sit and stress about whether I have jerked a lead loose or not.

I didn't faint until 1 1/2 years ago and still remember my first one as the worst one. I think not that we get used to stuff, but you do become accustomed to the feelings and sensations that occur. At first I was frightened by my paralysis, but now I know exactly what's going to happen and how I'm going to feel and it's not at all pleasant, but I also know it's not going to kill me. it's just going to be unpleasant. The same is true of fainting. Or any other new symptom.

You may get new symptoms on a regular basis and you adjust to them. It doesn't make them more pleasant, just less scary. I hoped my first syncope was going to be my last, but it wasn't. So I just had to make some accomadations for it. And go through a period of grieving and anxiety over one more thing to deal with.

If you see a therapist, it is a good idea to get some input from her/him on how to cope with this. Maybe you would feel better if you wore an event monitor for awhile. We all have different coping mechanisms for dealing with the unpleasantness of this disorder, and you may have to learn one for this.

I think what you are feeling is perfectly normal. I was a lot more frustrated and angry than anxious, but that's just me. I am sure everyone here that has had syncope (or any new unpleasant symptom) has felt the anxiety and helplessness you are dealing with now.

I hope it was a fluky thing, but you can't let it consume you...either it won't happen again or it will...and either way, learning a coping skill for it is an appropriate thing to do. It doesn't mean you can't be anxious, you just have to learn not to let the anxiety of MIGHT happen control your life. Good luck...

[ode_to_fantasy]

I'm soooo sorry you have to deal with this. The first time I remember passing out I was terrified, and literally thought I was dying. Since then I've gotten used to the feeling, and it seems normal. I know it's horrifying to think of it as becoming normal, but I think the first few were probably the hardest on me emotionally. For the most part, I'll pass out at least once a day, sometimes it's as much as every ten minutes. During a good spell, it'll only be a few times a week. Every time I come to, I am crying, but I think that's just my body's reaction to it. It gets easier, I promise.

*huge hugs*

[Ernie]

Hi,

I have never been getting used to passing out even if I have been living with this disorder for years. I am always scared that I am going to hurt myself or kill myself in the fall but I don't want the fear from stopping me living a life. What traumatize me still is when people mistreat me, ie at the ER. Even if I know the feeling of dying when I faint, every time it happens I hate it. It takes me 3 days to recuperate from a faint. So when I faint every day I don't recuperate.

My way of coping with it is joking about it and forgetting the whole situation. It works well for me.

[JaneEyre9]

Fainting is a lot worse than it sounds, I agree. Before I was diagnosed, I had no idea what was happening to me when I felt about to faint. My body just felt like it was shutting down! I think what helped me emotionally was getting a grip on what caused the faints each time. I saw in your other post that you started Florinef. Was anything else different about that day or the day before? Had you slept poorly? Had you not eaten much the night before? Have you told your doc about your episode? He or she might want you to have an event monitor.

One last thing that helped me was recognizing pre-faint symptoms. As time passed, I had tons of times where I felt "about to faint," and I was able to recognize those feelings so that I could abort the actual faint by lying down. Sometimes just lying down doesn't help-- another good thing to do is to get your legs all the way up in the air, if you can.

It does take a long time to get over a faint, so be gentle with yourself. Your body is "rebooting." ((Hugs))

Kristen

[Dawg Tired]

I am outright obsessed by it...

I am careful about the furniture in our house, as in "what if I hit my head on there?"

It takes me down - physically - for days after I faint. No, I have never gotten used to it.

[pat57]

don't go there. The only fruit of it is negative. Set asside 30 minutes to dwell,greive, cry, fear- each day. Then leave it there til the need time. When the thought comes up- tell yourself- I'll worry about that at 10:00.

good luck.

[lizb]

Sorry to read you had such a bad experience. That sense of losing control is the worst part of POTS for me. Right now I am lucky I get a warning and I am able to lie down however, if I leave it too long, it wipes me out and I feel physically drained for the whole day.

Take care, and I hope you are feeling better.

LizB x

[cardiactec]

thanks so much for all your replies/concerns........i still having a hard time...

janeyre, i started florinef about 2 months ago at .3mg's right off the bat to try and combat some pre-syncopal sensations i was getting........the florinef had helped to cut the number of those episodes but on the same token even though i was having fewer episodes, they were much more abrupt in nature and not so much gradual.........so i called the neuro and informed him of this and he said he wanted me to go off the florinef gradually..........so i started to do that on saturday (last weekend) to .2mg's a day instead of .3.........i had been on .2mg's saturday, sunday, monday, and tuesday with no problems - felt about the same........wednesday morning rolled around and i was giong to cut it down to .1 mgs (cuz the neuro told me every three days to cut it back another .1, but i hadnt because i was a littel concerned to do so)...........so anyway, that is when i passed out = wednesday..............i spoke with the neuro and told him what had happened and he said he didnt feel the syncopal episode had anything to do with cutting back florinef and that he wanted me to slowly, ONCE AGAIN, go off of it! ugh.................he said it didnt sound like florinef was helping me out much, which is kinda true........so he just wants to see how i do off of it....i told him of my concerns with doing this, and passing out again would NOT be cool, how really upset i have been over this, really traumatized by it to be honest.............he said he understood the concern but in order for him to properly help me and assess where i'm at, i need to come off the florinef......................so here we go folks..................................he said if i start passing out again he wants to try an SSRI....i REALLY REALLY REALLY dont want to be on an SSRI just because of the conclusions that people (yep, even medical personnel) who arent aware of your situation/medical problem draw from being on an SSRI -- i have already gone through the ordeal, before being diagnosed with auto dys, of being called "depressed", "anxious","anorexic", "on drugs" (cuz of my high HR).........etc....etc....etc.......so i'm not too KEEN on that idea....

i am just going to believe this was a fluke thing. i have had pots for 6 years with extreme tachy, and even the neuro said to me today that he was shocked i had gone this long without passing out with the rates i have..........so...hopefully that means it was a fluke and it wont happen again!

[pat57]

the SSRI is not for depression its for vaso constriction. It was put on 5mg. Below the therapic level for depression- for that resaon. Serotonin aids vasoconstriction. And after being on Florinf, norpace and a beta blocker but still passing out. I found relief with Norpace and low dose prozac. Florinef and beta blocker did not help me.

[Guest dionna]

i am sorry that you passed out. we didn't want you to join the club!!! i hope that you are doing better by now. hugs to you!!!

dionna

[yogini]

Cardiactec,

I had a really hard time with making adjustments to my medication, but going off florinef was one of the worst experiences of my life. I think there is a good chance your faint is a reaction to reducing your dose, especially since you haven't fainted before. You must have had a sudden reduction in blood volume. That doesn't mean that you have to stay on a high dose, but maybe you should taper off a bit more slowly? It took me 6 months to go off of 0.2. I did it 1/4 pill at a time every few weeks. Not that you need to go THAT slowly, but you could try 1/2 pill at a time and/or wait a couple of weeks before reducing. I'm really sorry for your experience and I hope it doesn't happen again! Feel better soon.

-Rita

[mkoven]

I know prednisone is different from florinef, but it was during my taper off prednisone that my symptoms got really bad-- even with a slow taper. It would make sense that tapering would make you more likely to faint.

[masumeh]

Hmm...I'm trying to find a response...."have you had such a hard time with it?".... Mine started in such a different way compared to yours. I fainted before any other symptoms came to light. And in the beginning, there was no pain (except head bumps), and the doctors originally told me it was related to my pregnancy (first pregnancy)...but later we found it was POTS and it was actually a mono infection at work on my ANS. In fact, within two weeks from the first faint, I was completely bedridden, and was soon hospitalized with a PE, developed nosocomial (sp?) pneumonia, hyperemia, and then miscarried. The symptoms didn't pass with the child, though. And there began the mystery illness....4 1/2 years of questions. So for me, in the beginning, it was just like, "Whatever...if this is going to be a strange pregnancy, Ok....I can deal...." But later, it was like, "What the @$@%$^ is up with this fainting (#(%#)$*@#(*.." It caused me to drop out of college....and I was in one of the top 10 nursing schools in the world.....but life it not what we plan for ourselves....no matter how hard we fight for control....our circumstances will always exert significant influence....but WHO we are depends on HOW we adapt, not WHAT we achieve. I believe so, at least. I AM NOT my disease....I am the patience that responds to it. I AM NOT my failures....I am the happiness that triumphs over them.

I guess it's all attitude....but every day is a new challenge...and some days are better than others. The first year was really hard. Now, it's usually just there in the background somewhere....thanks in part to having this forum to drain the pain. (Thanks everyone!)

[Guest tearose]

I am very happy for those who are able to use and get help with SSRI's.

However...

I will never take an SSRI. I think the use is off label and then I would be "mislabeled" as anxious. Truth is, there are horrible doctors and I will never be taken seriously if I take the SSRI.

Maybe it works for some but it is not worth the potential frustration for me. I would rather not.

So, what do I do?

Absolutely, every day, I use at least two compression garments. I also will carry a seat cane when I am more symptomatic. Or, I take a small sitting mat that is like a infant changing pad. These are nice and small and padded. I have found that my fainting came in spells and the whole symptom flare stage comes and goes. There are times of relapse and times of remission. I hope you can hang in there and find ways to build your strength into a remission soon.

best regards, tearose

[cardiactec]

I very much agree with you tearose.........call it pride if you want, but i'd rather pass out than use an SSRI and be labelled as anxious or depressed. been there, done that, not going there again!

as you have said, they use SSRI WAY TOO MUCH for things "OFF LABEL". my dad is on SSRI for LEG PAIN????? This was after countless tests to try and find out the root of the problem and to no avail........so they put him on an SSRI and guess what?? he still has leg pain .....hmm, wonder why??

I disagree with docs reasoning behind using SSRI when prescribing is clearly not for pyschological purposes - what the medication is PRIMARILY intended for.

sometimes i wonder that when docs arent able to put the puzzle together to come up with a cause of their patients problem, that they just write the problem off as psychological in nature, that their patients are ''depressed'' ....its easier for some docs to do this than to admit that they dont know what's wrong/how to PROPERLY treat the UNDERLYING problem instead of throwing anti-anxiety meds/anti-depressents at them........and so they prescribe such meds as SSRI for things off label such as LEG PAIN, CFS, SYNCOPE, FIBROMYALGIA, ETC, because MOST probably just assume the underlying etiology of these ailments is psychological...........lots of docs hand out anti-depressants and/or anti-anxiety meds out like candy, which is sad to say the least...speaking of which, i think most have forgotten how addictive anti-anxiety meds can be??

[DSM3KIDZ]

I'm so sorry to hear what your going through........emotionally and physically. How scary. I get pre fainting spells and I freak out.

Everyone here gave you good suggestions so just try to stay strong and hopefully it was just a fluke.

Dayna

[dawn]

Cardiactec,

I guess I am used to passing out as I have been doing so since my early teens.

It helps to lay down quickly and put your feet up when you feel it coming on.

I have fainted many times without warning though too. My heartrate gets very

slow also. I empathize because it is a horrible sensation. I always think "this is

it" when I feel it coming, even after all these years. I wish I had an answer for you.

Being labeled depressed and anxious, which I am, is not all that bad when you

try to obtain disability. You are more likely to awarded social security if you

do have a psych diagnosis. We all know we are not crazy but the medical system

doesn't know what to do with us. I am even labeled somatozation(?sp) disorder

which really makes me look like a kook, but I do not care. I know how bad I

feel. I do take a low dose of celexa and feel better. I have been off and on

SSRI's over the years.

My only advice is don't let the fainting incident become to big a focus in your life,

people faint. If we think about it too much we become housebound (I speak from

experience). I let fear rule my life for a long time.

I wish you all the best.

Dawn

[kmpower]

Cardiactec,

I have only come very close to fainting, but that was scary enough. Like the others, I so relate to the fear of the symptom on top of the fear of being judged a type of hysteric for having the symptom or taking an SSRI.

I just wanted to add my electronic hugs to those of the group. It seems as if the reduction in Rx at the same time was too much of a coincidence. When I have an explanation for a new symptom, I am less scared.

Lots of good wishes for an ease of your fears plus an ease of your symptoms.

OLL

[anna]

I also have some idea of how you fell, myself and my kids get the pre-fainting thing and that is horrid enough, but I think we are lucky as we can stop what we are doing and do stuff to avert a true faint.

Cardiactec- while on an EDS site I fund some info on a new possible therory as to why us EDSers have ANS dysfunction. Some Dr.s' believe EDSers have, ongoing pressure on the nerves in the neck leading to ANS part of the brain thus some how causing the dysfunction. Some medic's over here in the UK are trying to put together a research programe to look into this possibility. With this in mind it may lead some new line in meds or something.

Anna

[mkoven]

Could you give more on info on that eds website?

Michele

[MomtoGiuliana]

I agree that SSRI's appear to be highly over-prescribed--and it is the first thing doctors reach for when they can't determine anything else to do. Post-partum when my POTS was horrible, I had no diagnosis and both my gp and ob/gyn at the time (I left both of them after this) wanted me to "treat my postpartum depression". I was resistant to taking an SSRI until I was diagnosed with POTS by a specialist and he explained why it might help.

SSRI's have been documented in peer-reviewed articles to help approx 50% of POTS patients. As pat stated it is the vasoconstriction effect that seems to help. I know it makes a significant difference for me as far as regulating my bp, hr and blood pooling. If a doctor or any medical professional is going to judge me b/c I take an SSRI, I don't care. I prefer to feel well. I think it is really too bad that mental illness is still so stigmatized in our society.

Katherine

[yogini]

I agree with Katherine that SSRIs are pretty well-recognized for the treatment of POTS. Even my cardiologist knows about them - he doesn't know about any other meds except for florinef and BBs. As for the medical community at large, they aren't the people to help us - most of them don't even know that POTS exists.

For me, the most important thing is being as comfortable and active as possible. When I look back on my life, I won't worry about what doctors thought about me, but rather the life I lived and the experiences I had. Life is short and I don't want to spend any more time than I have to feeling sick or being stuck at home. A couple of little pills for me make the difference between being barely able to walk around the block and being able to live a very full life for someone with POTS. I haven't tried SSRIs, but have seriously considered them and wouldn't hesitate if needed. Of course this is a personal decision...most of all, it makes me sad that the ignorance of doctors and the public is discouraging people from trying medicines that might help them.

[masumeh]

Speaking of stigma, patience, and dealing with chronic annoying symptoms of any kind.... (otherwise, this might seem really off topic, but here it goes).... Did anybody see the movie "A Beautiful Mind"? I really love that one.. It won the APA award for reducing stigma. Thank God, I'm not schitzophrenic...but I think we can ID with it anyways, because he just keeps trying despite his symptoms destroying his career, mind and relationships. I love the line, "Maybe just try again tomorrow."