jbrian00

Absolutely...I have anxiety in addition to a lot of POTS symptoms, and whenever I am anxious about something, my heart rate will be higher than normal when sitting. When standing, it is also higher proportionately, and I will also have an exacerbation of other symptoms, particularly headaches or head tension, whatever is happening in my poor head. It will also take longer for my symptoms to resolve themselves, sometimes it takes up to a day for my hr to return to "normal" levels and other symptoms to reduce. The same happens after feeling any strong emotion, like love or hate. James

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

You're gonna find sodium in any electrolyte product since it is an essential electrolyte. If you only need potassium/magnesium/calcium or whatever, you could simply supplement with those and forget the sodium.

While on the subject of drinking water, ironically my mouth has been feeling particularly drier than normal lately. Even though I drink water, my mouth feels dry and it's a little difficult to swallow because of the dryness. What's interesting is that this has recently occurred since I have upped my water intake, as I don't think I was drinking enough before, so I got myself a 27oz bottle and sip from that all day long. I have been drinking around 64oz of water/day, sometimes a little more, but less than 3L. The more I drink it seems the drier my mouth gets. I haven't had dry mouth like this in the past. Just noticed it starting a couple days ago. Anyone know why this would occur? Is having a dry mouth like that a common symptom? I know it could be a side effect from my meds, but I doubt it cause I've been on them for a while and have not had a problem with dry mouth. I've been reading some about hydration and dehydration and electrolytes. The amount of water you should drink and the amount of electrolytes, if any, one should substitute does not appear to be an easy formula. Drink too little...that's bad...drink to much, that's bad...not having enough electrolytes...that's bad. I have actually tried to avoid salt since a couple years ago my cardiologist said that I was at risk for high bp, but haven't had a problem with that. I seem to sweat a fair amount though as my hands always seem clammy and my feet are usually cold and sweaty, but this is not new. James

Is that the same as the 24-hour urinary Sodium test? I'm gonna ask my doc about that, as that should determine if I need more sodium, correct?

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

Hi...yeah it's me asking away again I'm working out a list of symptoms to bring to my doc's appt on Monday. But I have a question for everbody. Are most of you like me and have an underlying discomfort feeling in your heart area most of the time, even when sitting or supine, or do most of you only notice your heart symptoms after standing up? The only way I can describe it is a nervous discomfort feeling that is always there, but varies somewhat throughout the day...worse when I'm anxious and turns most noticeable when standing up or when my hr is elevated. I notice a slightly different but similar feeling when my heart rate is near brady levels. I wonder if this is common for POTS or if this is mainly anxiety symptoms I have all the time. Could you please try the best you can to describe these types of feelings if you do feel something similar? Thank you alot everyone, James

You're gonna get the usual "depends on the individual" answer on this one I bet. I can tell you there is no set amount of time for Zoloft to take it's full affect. I would give it at least a good 8 weeks and by then I would think the Zoloft would be helping the best it can. If after that you see no improvement, perhaps you could talk to your doc about trying a different dose or trying a different SSRI or SNRI for example. In my experience with SSRIs (actually I'm on an SNRI Cymbalta which is similar except it also works on norepinephrine) is that they made the severity of my POTS symptoms less, particularly in hr improvement and anxiety/depression, but don't expect a cure. Hope it kicks in and offers you similar benefits, but if not there are other meds similar that may help. James

Hehe that would work if my PCP has happened to have knowledge about POTS. I don't know whether he does or not. From my experience...I don't know about yours...that PCP family practicianers haven't even heard of it, although my last doc at least asked if that was a form of dysautonomia.

Hi, I thought I would ask this question because I have been known to require a lot of sleep -- ever since I was an early teenager. Even now, I tend to be in bed about 11-11.5 hours before I actually feel somewhat rested in the morning (albeit some of that is time spent trying to fall asleep, which sometimes takes a good hour maybe more), but my family has expressed concern that I sleep too much. I can tell you that only sleeping the recommended 8 hours, I would be a walking zombie the next day. I try not to take naps, though (don't really feel like I need them after sleeping that long). I read that it is important for dysautonomics to get lots of rest, but how much is "lots". I also realize a lot of you have jobs or things you need to get up for/symptoms that keep you from sleeping, etc..., but with that aside, I'm just interested in how long you would you typically sleep for, if given the chance. James

Yeah I have a lot of questions. Being new, I want to learn as much as possible because the more we know and understand, the better we can address the symptoms that are giving us problems. That is why this discussion forum is so great. Newcomers can learn from members who have been battling symptoms for years and benefit from their experiences. I appreciate all your knowledge and advice. James

Yes, I can commiserate with you on a couple levels. I too have had problems with anxiety, and within the last 3 years depression from just feeling like crap all the time. In fact, my anxiety has gotten wrose since I'm so anxious about my health. Every doctor/ER visit I've had have diagnosed me as having anxiety/panic attacks. But like you I noticed that my heart would race every time standing up, and was convinced that anxiety was not the cause of this. I then found out about POTS after researching my symptoms, and brought in some literature to my last PCP. He ordered a TTT for me, which did confirm rise of >30bpm when tilted upright, and slight drop in bp. But he also explained that even if I had POTS (he couldn't make a formal diagnosis), all he could do was treat symptoms. Indeed, I am anxious, and he could definately notice that. He said if someone came in exhibiting my symptoms, he would have them on an SSRI and benzo. I've been on both before, and on them the orthostatic tachy was not as noticeable. In fact, it took coming off the meds to really notice and get a hold on what was really happening with my hr. And yes, it is very troublesome to get someone who will listen and open their minds to the thought of there being something else going on instead of just anxiety/depression. My dad and stepmom are still convinced I am just anxious all the time. They did hear the results of the TTT test, but apparently it didn't sink in. Anyway, after trying to go without meds and not seeing any light at the end of the tunnel for 4 months, I decided to go back on them (Cymbalta and Klonopin was what I was prescribed). I have to say, though, that I did feel better being on the meds. I think I mostly contribute that to the Cymbalta, as I eventually weaned of klonopin entirely). In fact, I felt so good that I decided that I would try to go off meds again, this time weaning more slowly, and try to handle my symptoms with natual supplements/herbs. Well, in hindsight that was a big mistake, because as soon as I was at a low dose of Cymbalta, I began to have problems, even more so than the first time I went off of it. Mainly issues with hr surges out of the blue, just sitting and "relaxing", and of course were more severe when upright. The first one scared me so much I ended up in the ER. Again, handed info on anxiety, told to resume my meds, and sent home. About the tiredness issue, I remember shortly after my first POTS episode (aka "Panic attack"), my cardiologist suggested a beta blocker, nadalol, which I took for a while. It was prescribed mainly for bp fluctuations. Anyway, while on that I was really tired all the time, and ended up going off cause my bp showed normal levels when measured at home. I was then referred to a psychiatrist, who had me on high dose Klonopin (8mg/day) and Zoloft (100mg). I was noticeably tired taking those as well. Later switched from Zoloft to Cymbalta (60mg)...tired and yawning all the time. It was not until I weaned my klonopin way down and dropped my cymbalta to 30mg that I was not yawning and tired all the time. So, it could just be the meds making you tired. Being tired is common with Beta-blockers and SSRIs. Perhaps it is a dosage issue (may I ask what mg Zoloft you are on)? I remember a number of years ago before being "POTSy" I was on almost all the SSRIs and they all made me feel tired and I had to nap like every day, and I was on a low dose. It is evident that Cymbalta does, at least for me, mitigate my symptoms and I don't feel the need to nap during the day, but then again I seem to need like 11 hours of sleep. James

How much water would you say you were drinking each day that flushed out your potassium (must have been a lot more than 3L I'm guessing)? Did the low potassium land you in the hospital? What kind of symptoms were you having? What connection did you learn about sodium and potassium? Are you now supplementing with both? Thanks

Hello, I have an appt on monday with a new PCP. I have no idea how much he knows or doesn't know about POTS, so assuming he knows nothing (like the last one I've been to), what types of things should I ask him about, based on your experiences with docs who don't know about POTS. Specifically, what tests do you think I should ask him about. I've had a TTT from my last PCP, but there may be things I wouldn't know to ask about. Tests for sodium/blood volume/electrolytes? Catecholamine tests? You know that sort of thing to help determine a more accurate attempt at diagnosis or treatment. I hope he doesn't question me as to why I think I may need some tests, as I might not be able to give a good reason :S What materials have you found helpful in giving to your PCP who doesn't know about POTS? I just need some advice to make my first 1 hour visit as productive as it can be. Thank you all, James

Ok, so I'm going ot see my new PCP next Monday. Are there any tests that I should ask him to do that would determine if I have a problem retaining salt and therefore would need to start consuming more salt? I guess everyone is different and not everyone with dysautonomia or showing POTS symptoms would have this problem, correct? I am not usually thirsty all the time. To reach my 64 oz quota I need to drink even though I am not particularly thirsty. When I drink a lot I naturally have to go to the bathroom more, but I never have problems with having to wake up in the middle of the night to relieve myself. I'd just like it to be confirmed by a test and not just salt-load because it is standard protocol. I don't exactly remember the NA-K relationship myself, but I know it has to do with the Na-K pump of cells (learned in biology couple years ago). Would taking electrolytes be the best way to go, since you get your salt and potassium? By the way, how would you all feel if you did not "salt-load"? Just interested. Thanks for sharing your knowledge

Correct me if I'm wrong, but we should only get sick if we drink excessive amounts of plain water, right? So keeping around 64oz or so I think would be fine and no worries about having your electrolytes being "flushed-out" to make us sick. May I ask you what caused your water intoxication issue? And so you would say that electrolytes are definitely beneficial to your symptoms? Do you only take your electrolytes when you have your POTS spells? Would they perhaps work if taken every day to try and prevent the spells from happening in the first place (if that is at all possible!)? Thanks James

I've been reading up on electrolytes. I know when you are dehydrated, like you said, you need to replenish your electrolytes and that plain water is not enough. I also know that drinking too much water (not sure how much) can, as you say, "flush out" the electrolytes. But dysautonomics are not necessarily "dehydrated" (except maybe if vomiting or diarrhea is an issue). Are electrolytes simply a method of "salt-loading" but keeping your potassium in balance? I did read on this site that dysautonomics, through some mechanism, do not retain sodium very well. Does anyone here know why this is? And as a result, they retain less fluid, which causes their blood plasma level to drop. Therefore, substituting with salt would cause more fluid retention, leading to higher blood volume, yes? Ok so I get why salt would be necessary in patients who have this issue with retaining sodium. But how does one know if they need to load up on salt or not? Have you all had your sodium levels checked and confirmed that they are low? I'd be hesitant to "load up" on salt if I wasn't sure that it was a problem, because like you said and as I explain below, it could result in a deficit in potassium (and therefore some heart-related issues). At least for me, I was told that hypertension could be a problem for me as my bp readings are usually on the high side (not upright). I know that is not true for a lot of you who are trying to raise your bp. So, do most of you have low bp readings while sitting, or is it only a problem when you are upright? I believe mine is on the high side (pre-hypertensive) sitting but I have noticed a slight drop upon standing. You mentioned many low on potassium as well. This does not surprise me because I learned in Biology that sodium and potassium are "antagonists" with each other through the sodium-potassium pump of cells. So a surplus of salt would naturally cause potassium levels to drop. That's why potassium lowers bp and salt raises bp. But as I think about it, wouldn't taking electrolytes (which contain potassium) hinder increasing your sodium levels? Thanks for the knowledge it is much appreciated and correct me if I'm wrong. James

I guess I'm having a little difficulty understanding why electrolytes would be beneficial for someone with POTS. Could someone please explain to me? Thanks

Electrolytes are usually needed for athletes who deplete a lot of water through sweat. But could someone explain the importance of electrolytes for dysautonomics?

I'm interesting in learning about these electrolyte packets and why you use them. Pardon me for my lack of knowledge

So it seems like you drink considerably more than the 64oz "recommended" amount then. Do people with dysautonomia require more water than most people? Thanks for the info

How much water do you typically drink in a day?

Thought I might mention this in this forum. Sportline (a fitness company which also makes heart rate monitor watches, in fact the same brand I use) has a fancy water bottle that will measure your hydration. Lets you know stuff like how much you've had to drink during the day and how much you have left to drink to meet your goal. For people concerned about getting the right amount of liquids a day. I personally do not have one, but someone might find something like useful for maintaining hydrated. Website is www.sportline.com. James

That's why I like the continuous reading on my strapless watch in cases like that. I can literally watch my heart rate go from 75bpm sitting, up to 140 standing, and then back down after a sit. It's not true real time but it gives a more accurate indication in cases of sporadic heart rate. And it flashes a little heart icon with the beat of your heart so you know it's accurately reading.

Thanks I'll keep that in mind. Trial and error is what it takes I guess. James