jbrian00

Do you know if hypovolemia is associated with decreased weight or not? I have noticed I've lost weight (down to 137 lbs) used to be like 160's I think. And I am eating more! Just wondering I haven't had my blood volume checked, but started losing weight around my initial episode.

Hey I just met with my new family practice doc. He was nice and above all was very willing to listen to me. I had to basically run through my last 3 years with him to get him up to date. Most of the conversation was focused on my anxiety and stress levels, though. It was not until the end that I brought up dysautonomia and POTS. He said he was willing to investigate a physical reason for my symptoms, as I think he too found it odd that my hr would shoot up every time I stood up. He said he definately thinks I could have some dysautonomia and malregulation of sympathetic flow to my heart, but he thinks it is connected with my anxiety. He didn't know about POTS, but he guessed they probably treat that with either a beta blocker or SSRI. His recommendation was to up my Clonazepam (Klonopin) by .5mg/day and he commented that my dose of 30mg Cymbalta was a "wimpy" dose and that increasing it to 60mg may help (although he's not gonna increase both at once). It was not as productive as it could have been, as my previous test results (thyroid, catcholamines, TTT, heart tests) were not there in time. So I went like 30 mins over cause I had to explain so much of my past and stuff.

So...I'm gonna see him in 3 weeks. By then my cymbalta (which I've been on a month) should be fully effective, and I'll know whether the increase in clonazepam will help at all. And he'll have my test results (hopefully) and I'm gonna push the idea of investigating a physical cause behind my symptoms, and at some point mention possibly getting tested at the University of Iowa for dysautonomia. But only time will tell if I'll get better or find some answers.

Anyway, just wanted to comment on my visit.

are your vitamins all once a day things? Perhaps that is what I need at the moment because there is no room for extra thrills (or frills) in a once a day routine.

All the best vitamin product out there seem to include a bunch of ingredients I'm particularly not looking for...like garlic, gingko Biloba, green tea, Hawthorn, diuretics like milk thistle, or engergizers like Ginseng. It's very frusturating that they throw in these herbs because they are supposedly good for you. But if one has problems with low blood pressure or retaining fluids (I suppose most people don't), these herbs can be counterproductive.

I use Flintstones. My POTS doc said that all "complete" supplements are pretty much the same, and if I can stomach the candy coated ones better, that's great.

Yeah I used to take these as a child They do taste good, but are for mainly for children/teens. By the way I'm 25 and male.

I know I did see several Cymbalta ads that mention that. I wonder how many other meds list that as a side effect. I don't remember that being listed for typical SSRIs...I've been on practically the whole gamut of them in the past (low doses) without an ounce of a problem (except for sleepiness). I bet they say that for Cymbalta because of the norepinephrine reuptake as well...just guessing though. I haven't had a problem with fainting or dizziness per say. But you do bring up an interesting point (as well as a deficiency in the Norepinephrine Transporter Protein being a mechanism for causing POTS), and it's my understanding that SNRIs (but maybe SSRIs also) interfere with the NET protein to prevent reuptake. Perhaps that is why they say SNRIs may work better than SSRIs for POTS (as Dr. Grubbs mentioned in an article).

There is still a lot that doesn't make sense, with too many unknowns. Was my first episode really just a panic attack that I've never had before, or was it the beginning of a POTS fallout? That happened while I was off all meds and hadn't started cymbalta yet. Like I said before I think, I was put on doses that I consider really high, especially since I have been sensitive to the effect of meds in general, and I wonder if that didn't make matters worse. It is really difficult to say if my POTS symptoms were somehow induced by my medications, such as a really unusal side effect of cymbalta.

I might consider a change to a regular SSRI such as Lexapro sometime down the line, cause it has been established twice that my body is so messed up that going without meds is not an option.

To throw more fuel on the fire, I wonder if my vitamin supplement that I had been taking had anything to do with anything, or contributing negatively. It contained green tea (like most quality vitamins do) and the amino acid L-tyrosine, which is a precursor to epinephrine, norepinephrine, and dopamine. Anyway, I recently discovered that green tea has an effect of increasing norepinephrine levels. That, combined with L-tyrosine, and the fact that any norepinephrine increase is prevented from being reuptaken by Cymbalta, may have caused abnormally high amounts of norepinephrine. That might have explained why I was so wired and had the unusual surges of tachy even when sitting calmly upon discontinuation of cymbalta the second attempt. Cause when I tried to go off the first time, I wasn't nearly as disabled with tachy or anxiety.

Anyway, just food for though. And combine that with the fact that I'm a 25 year old male and there is like a 5:1 female to male ratio. I must be a rarity or something.

James

Hi,

I'd like to get some input on what vitamin/mineral supplements that you would recommend, or particularly what ingredients I should look to avoid or include. I was trying out some vitamins from a really great company that is only located in New Zealand (I am in USA), but they are really comprehensive and I believe I am too sensitive to them, as they would make my head/chest feel funny and cause my hr to go up, probably caused by a combination of some herbs it contained (hawthorne, green tea extract, and ginkgo biloba). So I'm thinking that I need a simpler multi.

Any recommendations or advice? I don't want a cheap drug store brand.

Thanks,

James

I get headaches all over my head...in the back of the neck, sides, top, front, you name it? I don't know what is causing it. I've been POTS symptomatic for about 3 years...and these headaches started when I stopped my Cymbalta. But resuming Cymbalta (now back on a month) has not taken care of them. Mine are more like a tension/pressure or perhaps scalp related, but not what I would consider a real "ache". It is just really uncomfortable. I believe lying down does make them better, cause I don't have them when sleeping. Just when sitting or standing.

It also can be one of the tension headaches Flop had talked about or a migraine due to the barometric pressure etc. I get the tight pressure feeling when I have a migraine, especially those related to storms coming in or high barometric pressure.

I wouldn't let things like this worry you. Try to not let every little abnormality weigh on you, because this can stress you out, and make symptoms worse. Try to avoid stress, to avoid an increase in symptoms. If you do have these kinds of headaches, you can discuss the symptoms with your dr. and see what they say and what they think would be helpful. I think especially for the tension headaches a big thing with treatment is trying to decrease stress.

One can drive themselves batty, trying to figure out every little thing and what all is going on. It is important to be your own advocate in your healthcare, but try to not overstress yourself, because then you may not be able to advocate fully for yourself if it increases your symptoms.

The beginning of all of this can be overwhelming, but you can't let it get the best of you.

I know, but when I experience a wierd symptom like I've never had before in my life, I can't help but wonder what is going on with me. As time goes by, I admit that it is somewhat easier to tolerate the symptoms without freaking out because you've had them plenty before, and you've always been fine. It's like the heart rate thing upon standing...I've gotten used to it cause it happens all the time. The wierd head symptoms/headaches/pressures whatever you call them, are relatively knew to me, so yes, it gets me a little discouraged because I don't know if I'm digressing or something. My symptoms were manageable until I decided to go off my cymbalta, and even though I've been back on a month, these particular head symptoms aren't going away. I just hope history repeats itself and the cymbalta makes me feel better again.

James

Today just sitting on the couch today I have this wierd uncomfortable pressure feeling in my head. Do any of you experience something like this?

Are you saying the your hr is slowly increasing since you've been on bysolic (since you said it went from 74 to lower 90s)? I'm assuming this is when sitting and not standing. How does it compare now with the propanolol? I'm wondering if it will take a little while for your body to adjust from the propanolol to the bystolic, since it's used to having its other beta receptor blocked. So we will see if your hr remains under control with bystolic. Hope it does. Good luck!

kkrylee et al -

i just wrote more in your other post, but did want to briefly chime in re: the "coat hanger pain" subject. this type of pain can occur with any type of orthostatic intolerance, doesn't have to be related to chiari or to an injury, has no relation to age, etc. it is usually relieved, at least to some degree, by positional changes (aka worse when upright & better when reclined/ lying down). i've had this myself for years, though it's varied in severity over time. it's been something that i've discussed over the years with numerous autonomic specialists (grubb in ohio, khurana & rowe in maryland, vanderbilt, cleveland clinic, & several others by way of hearing them speak at a conference) and all of the docs have always agreed that it's an issue of insufficient blood flow &/or oxygenation when i'm pushing my body beyond it's capability to remain upright (standing &/or sitting, depending on my health situation at the time).

hope this helps,

melissa

I'm interesting in this "coat hanger" pain. Can anyone tell me what it feels like?

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.

Probably know this, but make sure you bring plenty of water. Maybe go early or fairly late in the day so you are not in the "heat of the day". Most beaches offer umbrellas which might provide some relief from the relentless sun and provide more breeze under them. If the beach let's you bring a cooler, you could bring a bunch of cold packs that you can put on your body if you get overly hot. Or look at those cooling vests. Can't answer your compression stocking question though cause I don't wear them or know what they look like or anything.

Of course don't forget sunglasses and some sunscreen and a wide brimmed hat would probably help as well.

Hope this helps somewhat.

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.

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.

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?

Also found this website which explain "hyperdynamic heart syndrome" : Hyperdynamic Heart Syndrome

Hope this helps you somewhat. The big difference I would imagine that differs it from POTS is that normally in POTS your resting heart rate is "fairly" normal. And you notice a dramatic rise upon standing. With a hyperdynamic heart, I would think your heart rate would be high all the time, and you would feel as if you just got done "exercising" most of the time, as the heart is overworking like it would if you were exercising.

I'm no expert, just my opinions.

I searched google for hyperdynamic circulation, because I was interested in learning about it as well. Only useful information was a short unfinished tidbit

from wikipedia:

Hyperdynamic circulation is an increase in pulse pressure and blood pressure caused by certain physiological and psychiatric illnesses. The patient often presents with a collapsing pulse and sinus tachycardia. Some of the possible causes of hyperdynamic circulation are listed below:

Anaemia

Anxiety

AV fistulae

Beriberi

Erythroderma

Exercise

Hepatic failure

Hypercapnia

Paget's disease

Pregnancy

Pyrexia

Thyrotoxicosis

Vasodilator drugs

Not very descriptive like I said that is all I could find. I'm interested in it because it said it could be caused by psychiatric illness (i.e. anxiety) which I have had since childhood. Again, more information is appreciated.

James

Last year I met this girl that I really liked, and she asked me out. We dated for a little while, but whenever she would call me on the phone, just the fact that I saw her name on the caller ID made my heart race. And whenever I drove to visit her, my heart rate would be really high. At one point she even mentioned to me that my heart rate seemed to be really fast. I told her it was because I was in love (because it's normal for your hr to be higher because of strong emotion, such as being with someone you love), but mine of course was tons faster than normal.

Even though we aren't dating anymore, she still calls me sometimes and the second I know she's calling, my hr would shoot way up.

James

I am one of those people who goes to a doctor who doesn't understand...I've been through dozens of random appointments and testing, 2 PCPs, a cardiologist, not to mention all the ER doctors...Before coming to DINET, I honestly just thought this was something a doctor could not help me with.

I feel like I've almost given up on doctors. It is embarrassing to go to the doctor and try to explain the stuff that I deal with on a daily basis, just for them to recommend an SSRI because "ANXIETY/PANIC DISORDER" is written all over my files. I ask too many questions and it makes me look neurotic and highstrung, further promoting the "anxiety" thing. So many health professionals also thing I'm a hypochondriac because I complain of all these different ailments at different points in time.

I also have a problem with people taking me seriously because of how I look and doctors are no exception. It really is humiliating for me to go into the office or ER in such ill health and get snubbed because I'm young, blonde, and look fit. My cardiologist consistently tells me nothing is wrong because my echo is normal, some people just have high heart rates. My PCP did actually diagnose me with Inappropriate Sinus Tachycardia, (which he still believes is caused by anxiety), and he treats that with beta-blockers. I rarely have panic attacks, and my anxiety is at a manageable level- however my symptoms (and there are many) persist.

I guess I just put up with it because the beta-blockers do help a lot, and I feel like I know much more about my condition than a doctor around here would. I would love to see Dr. Grubb or another equally knowledgeable specialist, though it is probably impossible at this point in time. I live in Western NY and the travel and cost would be too much for a broke college student such as myself. On an ending note, I am incredibly thankful that my dysautonomia is manageable (for the most part) and that this forum has given me the knowledge to keep on movin forward!

I've had the exact same experiences. It is highly frusturating. Even my parents are convinced that my problem is only anxiety/panic, because that's what all the docs have said. So I have to battle with them, as well as my docs to try and get through to them to consider the possibility of it being something else, like POTS, that is causing my symptoms and making my anxious. Granted, I have had social anxiety, but mainly I am anxious because of my health and symptoms that aren't being addressed properly.

That's why I'm seeking advice on how to tell my doc that I might have dysautonomia (POTS) without them dismissing it off as anxiety or hypochondriasis.

James

Thanks....I can relate to that post

Hi,

I don't go to a doctor that doesn't know or is not willing to learn about my disorder.

You've gone through a lot of PCPs haven't you?

The closest ANS center is at the University of Iowa, which is like an hour away, but they will not see a patient without first having a consultation with their PCP to see if they could be of help. I'm relatively new to my area and have not seen a PCP here yet (although I have an appt on Monday).

If he's like most GPs though, he probably has not heard about POTS. But, everyone needs a PCP, so unless your lucky enough to have one that has heard of POTS or willing to research about it, you are pretty much stuck.

My question is...what is the best way to introduce the fact that you think you may have POTS/dysautonomia to your PCP, who has no knowledge of it? I'm thinking of bringing in a POTS information brochure, but I don't want to overwhelm my doc on my first visit or scare him off from treating me. But how would he be able to treat me if he doesn't know what he's treating, or to find out what exactly is wrong with me! Also, he may not know to prescribe tests to check for Sodium/blood volume levels that I might need, or question me if I mention the tests.

Advice needed for my first visit with my family practicianer.

Thanks

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