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I just wanted to share the symptoms sheet I type out and will hand to my PCP when I see him on Monday:

Belching after drinking or eating anything.

Overall ?uncomfortable? feeling in my chest/heart area. Occasional chest pains.

Upon upright posture, I have a ?heart surge? and sudden increase in heart rate of around 30bpm.

After a minute or so, I notice a slight decrease in hr of apprx. 10-15bpm.

A similar increase in hr is noticed after any postural change, particularly noticed when sitting forward (from a laid back position) or turning over in bed.

When I was off Cymbalta I would have ?heart surges? that came out of nowhere. I'd have them just sitting on the couch relaxing and watching tv, and all of a sudden I would feel a surge in heart rate and accompanying shortness of breath. Hr would peak around 160bpm, and stay high for apprx. 30 mins, sometimes longer. Along with these surges, I would sweat excessively and I my body would shake.uncontrollably. While on Cymbalta I did not notice this happening.

When lying down in bed at night, I have noticed a particularly low hr (in the mid ? low 50s). Occasionally I will be awakened in the middle of the night with a thumping, forceful heartbeat. According to my heart rate watch the last time it happened my hr was 48bpm following the heartbeats. Upon changing posture/rolling over, the heartbeats would stop (as I mentioned, any change in posture results in a temporary increase in hr).

Exercise intolerance, particularly worse when climbing a flight of stairs. I will be unusually winded and short of breath, accompanied by a fast, fatiguing heart rate.

On occasion, I will feel a pressure in my head right above my nose, and it will feel as if I am not getting enough oxygen to my head, despite normal breathing.

On occasional, I will feel a weird pressure/tension in the back of my head and at the same time notice that I have some problems swallowing. I will feel sometimes when I go to swallow that I will not be able to start the swallowing reflex, which feels connected to that feeling in my head. I will then take a break from trying to swallow, and I am usually able to swallow on my next attempt.

Tension/pressure feelings all around my head (in different places at different times), aches in back of the neck, and sometimes on the sides of my neck. Sort of feels like a tight band, but not a typical ?headache.? I don't notice them as much when I am sleeping (supine). Seems to be particularly worse on a hot day.

Comment from someone on dinet forum:

Hi the sort of headaches that you describe with a tight band are classically called "tension headaches" and are common in the general population - often caused by stress and overwork. In dysautonomia we can get a specific problem due to reduced blood supply to the brain. The brain being the most important organ demands lots of oxygen and glucose, it needs the blood to supply these. When our BP and HR are out of balance the brain doesn't get as much blood as it wants so it "pinches" blood that should be going to the muscles of the neck and shoulders. This can cause "coathanger pain" but it can also lead to reduced blood supply to the scalp - this is what causes that tight band feeling, it is the scalp rather than the brain which is hurting. Fluids and salt along with trying to get the best treatment for dysautonomia generally helps with these sorts of headaches. Otherwise lying down for a while can be just as effective as taking painkillers.

Cognitive impairment/feelings with not being alert or ?with-it? mentally. Also difficulties with concentration, brain fog, memory, and word recall.

Pupils seem to always be dilated.

Clammy hands and sometimes cold but sweaty feet.

Anxiety and depression.

I think that about covers it...could these be caused by anxiety/stress/depression (as most docs have thought) or would it have to be something like POTS?

James

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James,

to someone with first-hand experience of dysautonomia / POTS it sounds as though you are describing typical POTS symptoms. Yes, a lot of the symptoms could also be attributed to anxiety or other psychological causes, but that is because anxiety stimulates the "fight or flight" reflex which is controlled by the autonomic nervous system. The difference in someone with POTS is that they will have the same measurable reproducible changes in physiological parameters postural change from lying to standing (note these can be masked by medications which improve POTS symptoms). The easiest way to have a physician evaluate this is for them to have a way of monitoring your heart rate (EKG machine, pulse-oximeter, sports HR monitor or even just counting it continuously) you lie flat on a couch at rest for a few minutes then rapidly stand upright - most POTS patients will experience a sudden increase in heart rate but by definition the HR must rise by 30bpm or more within 10 mins of standing up. (This is often called the poor-man's tilt test as it requires no fancy equipment). If this simple test does suggest that POTS may be the problem then I would advise that you seek an evaluation from an autonomic centre to further investigate your problems.

Good luck for your doctor's visit, I hope you are able to explain what you are experiencing to a listening ear.

Flop

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I wanted to PM you about this because I thought it might be a bit embarassing to post about anxiety language.... But I just wanted to advise against giving your new pcp this symptom list as is. See, they view for wordy descriptions of sensations as a symptom of anxiety and hypochondriasis. I avoided this with my doctors in the past by limiting the number of symptoms I share at one meeting, and phrasing it as concisely as possible. They simply don't buy the whole load at once, unfortunately...then they get defensive (knowledge wise) and blame it on your head--which is like soo extremely annoying it's indescribable. For example, just say, "chronic headaches" and then let him/her ask you "what kind of headache?", then say, "like around my head, kind of tight" or something concise.

I know you have a long history and many symptoms...but the fact is most doctors get intimidated and IF they believe you, then they are likely to dump you and say they are not qualified to handle such a complicated case...and if they don't believe you, your stuck with that anxiety label again.

Good luck!

Thank you for your wise knowledge!! I was actually thinking along similar lines...if I give the doc a long list of symptoms like that, they may become overwhelmed or think I'm just "dreaming up" things to say like you said a hypochondriac (actually, one internist I went to in the past diagnosed me as one and prescribed me an antipsychotic because I kept complaining about heart symptoms even after my heart tested fine). So yes, I want to avoid that. And if possible I'd like to avoid being dismissed with "only" anxiety. I do have anxiety, but I believe it is secondary to my POTSy symptoms. On the other hand, I don't want to downplay the severity or multitude of my symptoms. I'm sure if i put things like "headaches, racing heart, etc..." he will, as quite expected with my psychiatric history, diagnose me with anxiety symptoms, and ignore the possibility of having a rare disorder like dysautonomia/POTS, and therefore not get the tests or treatments that I probably should be getting.

So, what would you suggest? Limit the number of symptoms on my list to only the most severe and chronic? Instead of describing symptoms in detail, simply list them and then let him ask me about them?

I was planning on bringing in POTS literature and tell him I think I might have it. Do you think this is wise? Or do you think the doctor may think I am a hypochondriac, based on my psychiatric history? Keep in mind he will have my previous medical records and stuff. Also keep in mind my PCP will most likely not have heard about POTS, so that may not even be in his mind when trying to make a diagnosis.

So, how should I suggest to him the possibility of POTS without overwhelming him while at the same time trying to convince him that I am not suffering from "just" anxiety? I would like him to do some tests also, particularly a 24-hour urinary Sodium test to determine if I am retaining salt properly, or an electrolyte test...and he may not see the importance of testing for stuff like that.

Advice needed from everyone, please.

James

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How about something like this? I decided to take anxiety/depression off the list cause if he sees that it'll probably trigger an anxiety diagnosis. Also removed some annoying but non-debilitating symptoms. Hope that's not enough to overwhelm.

High heart rate upon change in posture, particular when standing

Exercise intolerance

Low heart rate when sleeping

Chronic Neck/head aches

Cognitive impairment/feelings with not being alert or "with-it" mentally.

Difficulties with concentration, brain fog, memory, and word recall.

Problems swallowing

Shortness of breath

James

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To me, this revised list sounds much better, much more to the point. It zeros in on the most important features.

A small tip: When you talk about your symptoms, don't look worried. Let the doctor do the worrying.

I think it's important for you to ask yourself: What exactly do I want out of this appointment? before you go into it. Like, are you looking for a recommendation to a specialist who can diagnose the POTS? Certain tests? Want to form a long term relationship with a supportive doctor who is willing to learn about POTS? Or are you looking for a doctor who already knows about POTS and can help YOU understand it, yourself, and treatment plans better?

In my experience, literature goes from your hand to the garbage. All depends on their attitude I guess.

Hope you find a good one.

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I would take things slowly in a first appointment. Briefly give your symptoms one at a time and give the doctor the chance to ask you for more detail (makes the doc feel important I think!). You have to gauge the doc's response to you during the consultation, it may be appropriate to say something like "I've been doing some reading and came across something called POTS that seems to fit my symptoms, it's about problems regulating heart rate and blood pressure - do you think it is worth finding out more about it?" Without coming across as too pushy or demanding it is a good way of seeing if the doc is open to the idea of an "unusual diagnosis" and whether they will be willing to work with you to investigate the possibility of POTS.

Flop

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I would take things slowly in a first appointment. Briefly give your symptoms one at a time and give the doctor the chance to ask you for more detail (makes the doc feel important I think!). You have to gauge the doc's response to you during the consultation, it may be appropriate to say something like "I've been doing some reading and came across something called POTS that seems to fit my symptoms, it's about problems regulating heart rate and blood pressure - do you think it is worth finding out more about it?" Without coming across as too pushy or demanding it is a good way of seeing if the doc is open to the idea of an "unusual diagnosis" and whether they will be willing to work with you to investigate the possibility of POTS.

Flop

Thanks so much. This is also really great advice. Do you think it would be worth bringing in some information about POTS to my first session, perhaps printing off an article or something? I guess I could first list my symptoms for the doctor, and answer any questions he asks about them. I'll have to gauge it of course, but I'm guessing he'll attempt a diagnosis for me, so he can start to treat me (I mean isn't that what the iniitial visit is for?). Let me ask you if you would recommend bringing up POTS before he attempts a diagnosis, or afterwards? I guess bringing it up before would give the doctor an opportunity to think of the possibility or, if he's willing, try to learn some about it before making a diagnosis. Bringing it up after a diagnosis might make him defensive about it. And, I guess if he is not willing to investigate the possibility, I move on to the next doc. Sound good?

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The symptoms do sound like they could be POTS/dysautonomia. I thought you had already been diagnosed with POTS, but I must have been remembering wrong. I checked back in your first post, and in that you said that you did have a tilt table test. Did a doctor give any sort of diagnosis along with the results? Have you gotten a copy of those test results? Sometimes the doctor at the hospital who does the interpretation on the test will include impressions/diagnosis. Even if there isn't a diagnosis on the records, the information could be helpful for a new doctor to have.

Also, the print out of the hr and bp changes during the test could give direction to your pcp. The new pcp may not know about dysautonomia, but drastic changes in hr and/or bp would indicate that something is wrong. Perhaps he would refer you to an electrophysiologist who may be better qualified to diagnose/treat whatever you have.

I once told a doctor that I checked my bp after standing up for only 3 minutes and it was 88/79. The doctor's response was, "That's messed up." This doctor is still learning about dysautonomia and doesn't usually deal with it in her office, but she knows that a bp of 88/79 is not normal and does indicate a problem! So all that to say, the new doctor might not know about POTS or dysautonomia, but significant changes in hr and/or bp upon simply standing up should be a clear indication that something isn't right.

I hope all goes well next week.

Rachel

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The symptoms do sound like they could be POTS/dysautonomia. I thought you had already been diagnosed with POTS, but I must have been remembering wrong. I checked back in your first post, and in that you said that you did have a tilt table test. Did a doctor give any sort of diagnosis along with the results? Have you gotten a copy of those test results? Sometimes the doctor at the hospital who does the interpretation on the test will include impressions/diagnosis. Even if there isn't a diagnosis on the records, the information could be helpful for a new doctor to have.

Also, the print out of the hr and bp changes during the test could give direction to your pcp. The new pcp may not know about dysautonomia, but drastic changes in hr and/or bp would indicate that something is wrong. Perhaps he would refer you to an electrophysiologist who may be better qualified to diagnose/treat whatever you have.

I once told a doctor that I checked my bp after standing up for only 3 minutes and it was 88/79. The doctor's response was, "That's messed up." This doctor is still learning about dysautonomia and doesn't usually deal with it in her office, but she knows that a bp of 88/79 is not normal and does indicate a problem! So all that to say, the new doctor might not know about POTS or dysautonomia, but significant changes in hr and/or bp upon simply standing up should be a clear indication that something isn't right.

I hope all goes well next week.

Rachel

My last PCP did have me to a TTT, but he did not flat out say "you have POTS". I don't think he knew enough to make a diagnosis. He said even if I had POTS, all he could do was treat symptoms, and so he put me on Cymbalta and Klonopin because anxiety is a big symptom for me, which makes my case particularly confusing I guess. Docs see how nervous I am during the visit and anxiety is usually diagnosed. Even my last PCP commented to me that I looked anxious, and if someone came in with my list of symptoms he would have prescribed the same meds. However, I'm sure the TTT did set off a flag that something else might be going on. I only saw that doc once, though, because I was set to move here to IL. I've been here for like a year and a half and was doing ok on the meds, but then I went off, had a bunch of problems, went back on, and I decided it was time to get a PCP locally here. I'm still not back to where I was on the meds before I went off, but my hr has improved again on Cymbalta. Right now I am just still messed up in the head, so to speak. And if I don't feel better soon I could seek treatment at University of Iowa ANS center, but I was told only after a consultation with my PCP.

So, we'll see what happens during my visit.

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OK, I think I get it. Sounds like you need this PCP to at least suspect POTS in order to get the recommendation to an ANS center....right? So you really need to avoid that "anxiety" label. Here are some more tips...

Attitude: your physician is NOT qualified to diagnose you with an anxiety disorder; that's the job of a psychologist/psychiatrist. So don't let them slip into that mode of discussion.

If the pcp starts talking about, "Are you under a lot of stress these days? Do you feel anxious or worried most of the time?" Just say something generic because IT's A TRAP! I was under mega stress at the time I was investigating for POTS, but I would just tell them, "Yeah, of course, everybody has stress. But I'm handling it really well. That's not what I'm here to talk about today." It's true. My stess is not their business. My body is. If I wanted to discuss my stress, I'd go to behavioral health, not a cardio or whatever.

Ticks and figits: outward signs of anxiety like leg ticking, finger play, teeth grinding, hair play, etc are all going to push the anxiety label onto the table...which you do not want to happen. Try to abstain from these kinds of behaviors in front of the doctor.

Internet searching: reading about diseases on the internet is something doctors generally hate to hear, and it also causes them to suspect hypochondriasis and symptom feigning. You might just ask, "Did you ever hear about Postural Orthostatic Tachycardia Syndrome?" If not, you might just say "I have some friends [i.e. us] who suffer from the disease and we share a lot of strange commonalities, like dizziness when standing, fluctuating heart rate...I just wondered if you had ever heard of the disease. It's generally diagnosed by neuro or cardio specialists, but I thought you might have come across some patients who had POTS before." [General tip: always turn the conversation back onto the doctor's opinion, as another post said, it makes them feel important.]

Depressed posture: slouching, sighing, flat tone of voice, avoiding eye contact, poor grooming, and crying are all telltale signs of depression. Try to dress sharply, sit upright, and speak confidently.

I'm not saying that anxiety and depression are not real diseases that require real medical attention....but you just need the doctor to focus on the less understood possiblity of POTS, so push the other things out of the discussion for now.

If your psychiatric history comes up, just redirect. Like, if the doctor ACTUALLY looks at your records (which I doubt), and then says, "Oh, I see you have a suffered from anxiety and depression in the past. How is that going?" You can just deflect it, like say, "Oh I have a very good psychiatrist who is working with me about that. I'm not here to talk about that today. What I really wanted to talk about is...."

That's what I got.

I hope these tips and/or other ppls' tips here work for you....If not, you could just straight out say, "I know I have anxiety and depression. But I believe I have POTS as well. What I really need from you is a referral to an ANS center." The pcp will probably comply, even if he/she is incredulous about POTS or your particular case.

You deserve to be evaluated by a professional who can rule out or confirm POTS. Proper treatment is like a right, not a favor, in most HMO bill of patient rights.

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I completely agree with the comments about reducing the list. I knew about all the symptoms I had, but decided simply to focus on the few that were most annoying. (Part of my problem is that I've been having these symptoms for years - since I was very young- and I didn't know that that blacking out when standing up WASN'T normal)

I still remember telling a neurologist that I always blacked out when I stood up and got wicked dizzy. He just looked at me and asked how long it had been going on, and I said since I was 8 or so (I was 19 when this happened). I would be laying on the couch in the living room and if I got hungry and wanted a snack I would have to get up and walk into the kitchen. I had to stand in front of the snack cupboard for about 10 seconds to get my vision back so I could pick out what I wanted to eat. That visit was the first step in getting diagnosed. And since it was a weird symptom I ALWAYS brought it up at the Doctor's office.

I also focused on my "panic attacks", though I never called them panic attacks or anxiety (Now I do because my Doctors understand it is physiologic not psychological). I explained specifically that I could be perfectly calm, and my heart would suddenly start racing, hands get cold and sweaty and then the nausea and other gastro symptoms hit. Once the gasto symptoms resolved so did everything else. That, I think, was the clue. I could trigger the gasto stuff with eating certain foods. Also, I would just want to curl up and sleep when the attacks were happening, which is also not typical. That is what made the doctors sit up and listen.

Anything that is NOT typical of another condition is something that needs to be brought up. Sort of like "I have this collection of symptoms that seem odd and are interfering with my life. Here's what they are." And when asked if it's just anxiety or something you can say "This is different than what I typically have and has a completely different set of triggers."

I was diagnosed with generalized anxiety disorder a long time ago. I know I'm a perfectionist. I know I get wicked stressed about stuff in general (probably due to too much adrenaline, but who knows. ) My "panic attacks" aren't anxiety triggered. The problem is getting a doctor to believe it. As weird/bad as it is, I leave that part blank on medical intake forms. That way I can't be accused of lying to the doctor, I just omitted info. If he asks about it, I tell him. Most don't.

Good luck at your appt.

Sara

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I agree totally that you need to reduce the list quite a bit.

When I showed my GP my list of symptoms, she glanced very briefly at it and handed it back to me. Had I asked her, I doubt that she could have repeated even one of them. I imagine the list was overwhelming for her. So, I chose just 3 of the most bothersome and we talked about these.

I'm glad for your post because I also know now what I must do, to try to get my GP to pay some attention to what I need to get across to her.

Good luck to you and to all of us who seek help and answers.

Mary P

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just to chime in, I agree, keep it simple, mention the most important symptom, and then if you can give specific numbers, such as "My pulse goes from 70 to 130 as soon as I stand." For example, my doctor reacted when I said by bp dropped from 110/50-72/38 while exercising. and that's more precise, than "I feel bad when I exercise"-- which I do. and then the more specific you can be about your impairment-- "I can stand for three minutes before I feel like I'm going to faint," "I can walk for one block before I want to throw up."

the more calmly and empirically you can describe the problem the better--- and then let them first try to "figure it out." I think docs like to be the ones to offer the diagnosis. If he doesn't come up with pots/dys, you could say something like , "I've heard about something called POTS, where people's hr shoots up, etc..... do you think that might explain things?"

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I completely agree with the comments about reducing the list. I knew about all the symptoms I had, but decided simply to focus on the few that were most annoying. (Part of my problem is that I've been having these symptoms for years - since I was very young- and I didn't know that that blacking out when standing up WASN'T normal)

I still remember telling a neurologist that I always blacked out when I stood up and got wicked dizzy. He just looked at me and asked how long it had been going on, and I said since I was 8 or so (I was 19 when this happened). I would be laying on the couch in the living room and if I got hungry and wanted a snack I would have to get up and walk into the kitchen. I had to stand in front of the snack cupboard for about 10 seconds to get my vision back so I could pick out what I wanted to eat. That visit was the first step in getting diagnosed. And since it was a weird symptom I ALWAYS brought it up at the Doctor's office.

I also focused on my "panic attacks", though I never called them panic attacks or anxiety (Now I do because my Doctors understand it is physiologic not psychological). I explained specifically that I could be perfectly calm, and my heart would suddenly start racing, hands get cold and sweaty and then the nausea and other gastro symptoms hit. Once the gasto symptoms resolved so did everything else. That, I think, was the clue. I could trigger the gasto stuff with eating certain foods. Also, I would just want to curl up and sleep when the attacks were happening, which is also not typical. That is what made the doctors sit up and listen.

Anything that is NOT typical of another condition is something that needs to be brought up. Sort of like "I have this collection of symptoms that seem odd and are interfering with my life. Here's what they are." And when asked if it's just anxiety or something you can say "This is different than what I typically have and has a completely different set of triggers."

I was diagnosed with generalized anxiety disorder a long time ago. I know I'm a perfectionist. I know I get wicked stressed about stuff in general (probably due to too much adrenaline, but who knows. ) My "panic attacks" aren't anxiety triggered. The problem is getting a doctor to believe it. As weird/bad as it is, I leave that part blank on medical intake forms. That way I can't be accused of lying to the doctor, I just omitted info. If he asks about it, I tell him. Most don't.

Good luck at your appt.

Sara

Thanks for your comment. I don't know if you read my intro post, but after going off meds (Cymbalta and Klonopin), I would have similar "panic attacks" where I'd be sitting on the couch and all the sudden my heart would shoot up, just "relaxing" (not anxious). I would also get really sweaty, and I would shake. I was interested in your comment about once your gastro symptoms relieved, so did everything else, in particularly what kind of gastro symptoms were you talking about, and how you resolved them (if you feel comfortable discussing...you could even PM me). The main gastro complaint I have is belching, which occurs almost automatically after I drink or eat anything. Just interesting to me why a gastro complaint would trigger a panic episode like you mentioned. I just assumed mine were from medication withdrawal (I went off slowly and tapered), but I had to go back on meds cause I didn't appear to be getting any better.

One other thing while we're on the subject. The "panic attacks" I had trying to go off meds resolved themselves after going back on them. So, should I still mention them, even though they don't bother me on my current meds?

Thanks for everyone's helpful advice...I'm sure it will help a lot during my visit.

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I completely agree with the comments about reducing the list. I knew about all the symptoms I had, but decided simply to focus on the few that were most annoying. (Part of my problem is that I've been having these symptoms for years - since I was very young- and I didn't know that that blacking out when standing up WASN'T normal)

I still remember telling a neurologist that I always blacked out when I stood up and got wicked dizzy. He just looked at me and asked how long it had been going on, and I said since I was 8 or so (I was 19 when this happened). I would be laying on the couch in the living room and if I got hungry and wanted a snack I would have to get up and walk into the kitchen. I had to stand in front of the snack cupboard for about 10 seconds to get my vision back so I could pick out what I wanted to eat. That visit was the first step in getting diagnosed. And since it was a weird symptom I ALWAYS brought it up at the Doctor's office.

I also focused on my "panic attacks", though I never called them panic attacks or anxiety (Now I do because my Doctors understand it is physiologic not psychological). I explained specifically that I could be perfectly calm, and my heart would suddenly start racing, hands get cold and sweaty and then the nausea and other gastro symptoms hit. Once the gasto symptoms resolved so did everything else. That, I think, was the clue. I could trigger the gasto stuff with eating certain foods. Also, I would just want to curl up and sleep when the attacks were happening, which is also not typical. That is what made the doctors sit up and listen.

Anything that is NOT typical of another condition is something that needs to be brought up. Sort of like "I have this collection of symptoms that seem odd and are interfering with my life. Here's what they are." And when asked if it's just anxiety or something you can say "This is different than what I typically have and has a completely different set of triggers."

I was diagnosed with generalized anxiety disorder a long time ago. I know I'm a perfectionist. I know I get wicked stressed about stuff in general (probably due to too much adrenaline, but who knows. ) My "panic attacks" aren't anxiety triggered. The problem is getting a doctor to believe it. As weird/bad as it is, I leave that part blank on medical intake forms. That way I can't be accused of lying to the doctor, I just omitted info. If he asks about it, I tell him. Most don't.

Good luck at your appt.

Sara

You mean you don't indicate on the medical form you fill out prior to your first visit that you have anxiety/depression? I can't decide to mark that or leave it blank. If I mark it, it might sway things toward anxiety, which I'm trying to avoid (even though it's probably all over my previous reports). My goal is to convince my doc to look into the possibility of my symptoms being caused by something other than anxiety.

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I was interested in your comment about once your gastro symptoms relieved, so did everything else, in particularly what kind of gastro symptoms were you talking about, and how you resolved them (if you feel comfortable discussing...you could even PM me). The main gastro complaint I have is belching, which occurs almost automatically after I drink or eat anything. Just interesting to me why a gastro complaint would trigger a panic episode like you mentioned. I just assumed mine were from medication withdrawal (I went off slowly and tapered), but I had to go back on meds cause I didn't appear to be getting any better.

One other thing while we're on the subject. The "panic attacks" I had trying to go off meds resolved themselves after going back on them. So, should I still mention them, even though they don't bother me on my current meds?

A couple things of note. (TMI alert)

The gastro symptoms I don't really mind sharing as unfortunately WAY TOO MANY people on this site have the same / or similar things.

I get the fast heart rate, the sweaty palms, and severe nausea along with cold chills. My stomach starts getting angry, usually very painful and gassy. Next, I get severe diarrhea (usually about four episodes). Once everything is out of my system I start to get warm again, starting at my hands and working up into my chest. The shakes stop and the stomach pain stops and the heart rate slows down again. This whole process takes about 1-2 hours, though I have had it last overnight. (Almost always hits early morning (if I don't get enough sleep) or late at night.) I guess they aren't really gastro episodes, but whole body freak out episodes.

I would mention that the meds helped whatever you had going on, though mentioning that may tip the scale toward anxiety. Some doctors just don't understand the concept of off-label. (Ativan (usually for anxiety) is also used for nausea) A lot of drugs usually prescribed for "mental" disorders help us because they calm down the nervous system. I'm just the opposite, I take a stimulant to trick my body into not producing the adrenaline. And one thing to note, most doctors don't read the reports anyway.

Good luck to you.

Sara

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