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.

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.

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!

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

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.

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.

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.

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'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

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