jbrian00

I starting getting the kind of headache you described after taking Mididrine, and I'm fairly sure that for me it's a side effect of the medication. It used to be very pronounced, when I was on a higher dose....and at that time, it would go away if I drank a massive amount of water. The headache became a cue for me to drink more, in fact, because the relief was immediate with the water.

Did you try Tylenol? Simple but effective.

I'm glad you found that water solved your headaches. Another thought of mine is that they were caused from high bp, but I have not been monitoring my bp like I probably should be. Stress definitely makes them worse cause actually right now I had a stressful situation and I am feeling the effects more than ever. One time it was so severe and I checked my bp was really high (150/115 around) and I had an unusal pressure in my head that I went to the ER thinking I might be having a stroke. I was incredibly anxious that day, but ER doc said didn't sound like a sign of stroke and not to worry unless bp gets near 200/120.

Just wondering, how much water do you have to consume to make the head symptoms go away?

Thanks,

James

I for one would recommend a Sportline watch...like someone else in here mentioned. It does not require a chest strap and you can use it using only a single finger. I shelled out nearly $100 for their top of the line watch, but I'm sure their lower models will work just fine. The model I have stores hrs and has a built in pedometer that also tells you the speed you walk (although the accuracy of the speed is very questionable), but it will tell you how far you walk and it helps me when I walk outside or when I can't use my treadmill. A benefit of the expensive model also is that if you hold down the hr button, it will continue to monitor your hr, as opposed to just showing your hr at a given moment. I don't believe it is as continuous as having a strap (and you have to keep the button held), but at least you can see how your hr changes when you are sitting to when you stand up, etc. I compared accuracy to the monitors at the hospital and it was within 2 bpm. I have the Solo 960, but keep in mind that particular watch is the size of a man's watch (I think it needs to be larger do to the pedometer/accelerometer features). Website is www.sportline.com. They also have a fancy water bottle that keeps track of your hydration, but don't know about those.

Hope this helps.

James

I take vitamin C and glucosamine for my eds joints, including those that already have some arthritis. No real effect that I've noticed on ans. Not sure how much they help joints, but it's a preventive.

Otherwise I take a good multi, calcium, magnesium, and d for bones.

Do you all take multivitamin/mineral supplements? I felt the best on Cymbalta, Omega 3 fish oil, and a multivitamin/mineral supplement. The supplement has herbal extracts though like gingko, hawthorne, and green tea and amino acids which are "supposed" to be good for neurological functioning. But stupid me I tried to see how I would do off all meds, so I quit Cymbalta. Off cymbalta, I was having heart surges left and right...even just sitting still on the couch...hr would suddenly shoot to 140-160bpm for roughly 30 minutes, and then settle back down perhaps because of a dose of klonopin. Orthostatic tachy was around the same...but I felt a lot worse heart-wise to the point where I knew my hr would shoot up if I moved at all. I was still taking my supplements at the time, and I wonder if they were making things worse for me, cause I tried to go off cymbalta once before and lasted 4 months before having to go back on, and I was off my supplement for most of that time. Been on cymbalta now for 3 weeks and my head symptoms have not gone away. My hr issues have settled back, though with no more of those sitting heart surges and better ortho hr. I decided to try my supplements again, and I felt a little worse in the head/heart area. It just doesn't make much sense, cause taking the supplements with cymbalta before I felt pretty good for me, and didn't have near the head symptoms I have now. And this happens after just one daily dose of supplements. It's so difficult to tell if it is making things better or worse, or if I am just feeling the usual POTSy symptoms. I would like to take a multivitamin/mineral supplement to ensure proper nutrition.

Interesting question. I'm a speech pathologist and being very aware of language issues word finding problems were one of the first things I noticed and concerned me. They are different problems - word finding and stuttering. However, under periods of stress anyone can be known to have stuttering behaviors though not truly be a stutterer. However, my guess is that you are experiencing stuttering due to stress more than anything. If you are repeating whole words more than parts of the word that is a sign it is a stress related stutter and not a true stuttering problem. If you want to PM me, feel free.

By the way - the language centers of the brain are in the L hemisphere.

Amy

Wow just the person to answer! The reason I asked is that I've been stuttering since a child. Along the way I've also had wierd symptoms such as some light sensitivity (to sunlight...but that may be from not wearing sunglasses at first) and my pupils have always seemed dilated even in light when other's are not. So maybe I had some slight neuro issues since childhood that may have progressed up to POTS symptoms which only manifested 3 years ago. So just wondering if maybe could be related.

FYI My problem is not being able to get out certain syllables...like st..., scr..., squ..., sp... type words and sometimes repitition of the first syllable of the word several times before getting the rest of it out. I haven't been through speech therapy and have kinda learned to get around it by substituting other words and stuff. But it is definitely worse under periods of stress...such as the stress I've been under since developing my hr and POTS-like symptoms.

Thanks for the info.

Is stuttering a symptom of POTS? Just wondering.

Hi!

I am kinda working to respond to peoples posts... I have thought of a lot of things I wanted to add, but haven't had the time or energy. So, hopefully I will get around to some of it soon!

But, I wanted to add to this post some info. that I thought could help. First, I wanted to put on the disclaimer that it is from Wikipedia (which, I tend to go to first, because it is more straightforward and easy to read, but before taking any of the info. 100% make sure to get info. from a credible source.)

Also, just because this may or not fit for yourself, I am not a dr. and there could be many other explanations than this one.

But, in taking an impromptu refresher course on the the Vagus Nerve, I thought some of the info. helped me with my overall understanding and that others may find it useful as well.

Vagus has innervations to swallowing, voice, breathing etc. muscles along with the heart. So, I guess it would stand to reason that if we can have overstimulation of Vagus to the heart that we could have it to other muscles and organs as well.

"The vagus nerve supplies motor parasympathetic fibers to all the organs except the suprarenal (adrenal) glands, from the neck down to the second segment of the transverse colon. The vagus also controls a few skeletal muscles, namely:

Cricothyroid muscle

Levator veli palatini muscle

Salpingopharyngeus muscle

Palatoglossus muscle

Palatopharyngeus muscle

Superior, middle and inferior pharyngeal constrictors

Muscles of the larynx (speech).

This means that the vagus nerve is responsible for such varied tasks as heart rate, gastrointestinal peristalsis, sweating, and quite a few muscle movements in the mouth, including speech (via the recurrent laryngeal nerve) and keeping the larynx open for breathing. It also receives some sensation from the outer ear, via the Auricular branch (also known as Alderman's nerve) and part of the meninges.

Effects of vagus nerve lesions

The patient complains of hoarse voice, difficulty in swallowing (dysphagia) and choking when drinking fluid. There is also loss of gag reflex. Uvula deviates away from the side of lesion and there is failure of palate elevation."

So, I guess my point is that many of these "odd" symptoms kind of make sense when looked at from this angle. But, there can be other explanations as well.

Hope that helps somewhat, and if you continue to experience symptoms make sure to discuss it with your dr.

Thank you for the information about the vagus nerve. I did go to the wikipedia site to read about it. I did see under the effects of vagus nerve lesions difficulty in swallowing (dysphagia). I then looked up dysphagia and read the following:

Other problems include not being able to start the swallowing reflex (a stimulus that allows food and liquids to move safely through the pharynx) because of a stroke or other nervous system disorder. People with these kinds of problems are unable to begin the muscle movements that allow food to move from the mouth to the stomach.

That seemed to accurately describe the mechanism related to swallowing symptoms I have sometimes. But I should mention that I only experience this sensation upon occasion and it hasn't turned into a problem with the actual swallowing. I only feel for a split second that I might not be able to swallow, then I take breath and I'm always able to swallow when I try again. I found drinking water helps a little when I do experience that sensation. Most definitely my problem has neurological origins related to beginning the swallowing reflex (or the reflex is delayed). So I'm assuming this is related to POTS because of the sensitivity with the vagus nerve? Where did you find out about this vagus nerve thing belonging to POTS?

I have also had a stuttering problem since childhood. Do you think this problem could be related to the vagus nerve as well?

Thanks,

James

I started taking b-complex at the same time that I started other medications, and noticed a significant lessening of my symptoms. I assumed this was because of the prescribed meds, and when I ran out of vitamins I just didn't take them for about two weeks - and my symptoms got much worse!! So now I'm religious about taking it. I take a regular b-complex (Wild Harvest brand); it's 50 mg total with 50 mcg of b-12. I have no negative side effects (except for the neon yellow urine!), but I don't really have an unusual drug sensitivity. I do always take it with food, which might help.

Does anyone know - does the neon-yellow urine mean my body isn't absorbing all the vitamins? And if so, is there a better way to take it (maybe take half a pill twice a day?) in order to absorb it better?

I also know there is herbal tea with b-12 only. If you have trouble tolerating it in pill form, maybe try the tea?

jump

The neon-yellow urine is a harmless side effect of the riboflavin (vitamin B2). Don't believe it has anything to do with lack of absorption.

I take Nature Made Super B-Complex. I love it-- no side effects, which is rare for me! I take it with food every day and have felt improvement while on it. It has 15 mcg of B12, as well as other B vitamins, vitamin C, and seems to be just right for my needs.

It can make your urine neon yellow, so don't be surprised if you try it.

FYI I think the yellow urine is caused by the riboflavin

Every once in a while, I will have this wierd symptom that has to do with the swallowing reflex in the head. I'm not sure how it works, but sometimes I will have difficulty getting myself to swallow because of some reflex reaction (something felt near the back of my head) that I'm assuming is not quite relaxing enough to allow the swallowing reflex. I get it like I said only once in a while, and I have to concentrate more on swallowing. That's the best I can do to explain it. Can anyone here possibly relate to this? I don't believe it is caused my swelling or anything in my throat.

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 tothe 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.

Flop

Thanks flop...you might have hit it on the head, but I'm not sure. How do you diagnose something like that? I admit I have not been as diligent as I should with consuming water (fluids), but I just purchased a new bottle that I am going to carry around with me each day to up my intake. As for salt, I'm a bit leary. My cardiologist has informed me that I am at risk for hypertension, so I don't want to load up on salt until I get my doctor's suggestion for that. Even still, I have not been so blood deprived that I have fainted like a lot of you on here with NCS. But I do feel like I could be more alert or "with it" with my thinking, so maybe it is a blood flow problem. Is it normal for that to happen even if sitting? Upon standing, I do feel a bit more pressure than with sitting.

Hello,

I've been trying to get a grasp on some head symptoms I've been having. It's not something that I would label as a typical headache as the pain does not hurt, but it is annoying and sort of feels as if a tight band were stretched around my head. Back of the head, top of the head, front of the head, and the sides...all around. I know headaches are common occurrences, but can anyone relate to how I feel. I have these feelings every day to varying degrees throughout the day. Wondering if this is common for POTS or a side effect of meds. I have it sitting or standing, but do not notice it much at night when I'm supine and sleeping.

Thanks alot,

James

The only other thing I could think of but didn't mention about is that when I was a child I fell from like 7 or so ft and hit my head on a rock. Whether my initial symptoms (like sunlight sensitivity or sweating) started after that, I do not remember. But that is interesting what you said about the spinal column thing. I assumed I was ok after the fall though cause that happened about 15 years ago and I've been ok since then.

Hi,

I think that there has been some evidence of dysutonomia caused by meds, I think it is normally though after taking it for a very long time. Also, I think that some meds could more or less cause some of the symptoms of dysautonomia, but once discontinued and readjusted everything should return to "normal". So, meds I think could be a possible cause. Also, if it is something that was mildly present prior to starting a particular drug, and then you took that drug (much like with an illness or surgery) that could be your trigger for POTS/dysautonomia if it stressed your body out, and you were already predisposed genetically to dysautonomia etc. (These all come from what I have read on the theories of the etiology etc. of dysautonomia- it is all so new that a lot is not known currently).

For TTT test what was beginning HR? Ending 130 bpm?

Somewhere there is an article that shows that POTS is not caused by anxiety. This maybe helpful to give to drs?

SSRI vs SNRI, I think this is patient dependent and is often found through trial and error to what works or doesn't. I benefit from SSRI's, but I may although have not full tried, benefit more from SNRI's.

The SSRI for me helps with the heat intolerance and blacking out, and major BP/HR shifts with changes in position.

Hope that helps!

Thank you. I've been on SSRIs (like 4 or 5 in the family) about 7 years ago (albeit small doses) for social anxiety, and I did not exhibit any unusual symptoms and was able to come right off cold turkey without trouble. Then 7 years later I tried a couple other meds for anxiety, such as propranolol (a beta blocker) and xanax xtended release. Didn't have problems on those either, and eventually went off those meds...still fine. Then a couple weeks later, had a panic attack (or POTS episode?) out of the blue. After that, a slew of meds like I mentioned before. I remember when my psychiatrist put me on high dose klonopin (2mg 4x per day) and high dose zoloft (100mg) for panic disorder, I felt a change in my heart like its beating was supressed or something cause I used to noticed my heart beating more, and I wonder if those meds in high doses caused some dysautonomic symptoms after being on them for over a year (I've always been sensitive to meds). I didn't notice the orthostatic tachy at first but that might have been due to the meds suppressing my adrenalin levels, but as I began to taper down my klonopin and reduced my cymbalta from 60 to 30 mg (I changed from zoloft to cymbalta), the orthostatic tachy became more apparent. Then after trying to discontinue all meds (tapering down of course), first klonopin and then cymbalta, I had unbearable neuro symptoms, orthostatic tachy where my hr would increase a good 30+bpm upon standing, and the symptoms were still present more than ever after 4 months off, so I gave up and went back on. Then my symptoms were still apparent, but less severe back on cymbalta. Anyway, after recently trying to go off cymbalta a second time within the last 3 months, but this time much slower to see if that would ease symptoms of withdrawal, but this time my heart symptoms were even more severe, and I would have tachy surges sitting down as well as the usual surges standing up, as well as neuro symptoms. I was at the point where if I moved, my body could predict a tachy surge, so I ended up not moving much and just sitting on the couch all day, except to get up when I needed to.

Then I decided enough was enough...I decided to go back on meds, and I'm now 3 weeks back on cymbalta and klonopin. Back on the meds, I no longer get the tachy surges and shaking I had off of them. I still have some neuro symptoms but they are not as bad. My orthostatic tachy is improved. Instead of a steady 130-140bpm while standing (85-100bpm sitting), I am now at 70-90 sitting and upon ortho initial increase to 90-100 and then settling down to around 85-90. But my rates go down even lower late in the evening, and I have found that I am actually brady when going to bed at night. So as you can see, there is still quite an increase even on the meds, but not as severe and I am able to stand for longer periods of time and go places. Once my cymbalta totally kicks in, I suspect I will feel even better like i did last time and I hope I will be able to start my treadmill exercises again, which helped me. So only time will tell.

It is so difficult to make sense of this all. Is this just anxiety, is it side-effects of meds, or is it POTS or other dysautonomia? The docs I've seen in the past all initially diagnosed anxiety. This is not surprising though. I do show anxiety symptoms, but anxiety is also a symptom of POTS, and I've read that POTS is commonly misdiagnosed as simply anxiety. My last doc did a TTT. I don't remember exact figures but resting was around 90-100 bpm and upright was a steady 130+bpm. I was off meds during the test. It also showed a drop in bp but I don't remember how much, but not enough to make me faint (I've never fainted...knock on wood!). I moved within the last year though and I'm going to see a new doc in my area, so if you have any suggestions on what I should bring up or anything, please give me your advice.

Thanks alot,

James

Anybody tried the following herbs?

Gingko Biloba (circulatory stimulant--said to increase blood flow to brain)

Butcher's broom -- said to help blood vessels constrict/improve blood vessel performance

Hawthorne Berry -- said to be useful for low and high blood pressure/chest pain/overall heart health

Terminalia Arjuna -- useful for cardiovascular disorders

I'd like people's opinions on them and whether they may be helpful (I know everyone is different). Any contraindictions known with POTS. I know some are slight diuretics.

I'd always settle for a natural approach over big pharma.

James

Actually, before I read the "48 bpm" thing, I was thinking: That's brady. Yeah, it happens to me also. Brady, for me at least, comes on stronger when laying down. So when I wake up with it, it's hard to get up but important to try to sit. Maybe you need to sleep with your head elevated?

The "pounding" is what brady usually feels like for me when it gets really low. Below 40, I'll be unconscious for several hours. THe pounding is horrible, and starts around 60, 55. Very tiring.

Hope you get some help with that. Did you talk to your cardio about brady? Mine lowered my Midodrine dose in order to kick the brady, and it worked.

From my experience, my brady episodes are indeed more severe while lying down, but I've only gotten the pounding heart beats like that while asleep. I don't get the pounding heart over 50 bpm, but I do feel a little wierd with slight breathing changes under 60bpm. 48 is the lowest I've seen and I began to where my heart rate watch while sleeping so I can monitor it if I feel wierd or have episodes like that. I've noticed it happening when I sleep on my stomach. I'll have the episode, wake up, and turn over onto my back, and shortly after the episode will end. I usually have had only 1 episode during problematic nights, but there was one night a while back where I had 2 occurrences. I have tried using 2 pillows in an attempt to elevate my head, but I'm afraid if my head is elevated, it won't receive enough blood to it. Also I found it doesn't make that much of a difference in my heart rate. Any time I roll over, my hr increases 10-15bpm and then settles back then. Does the same thing when sitting and I switch positions.

Right now I'm tapering my klonopin to see if that will help my brady. Thanks for your suggestions.

James

Yeah I have a lot of other symptoms I've had since a kid, like rare chest pains, eye sensitivity to sunlight and my pupils seem to always be dilated. I sweat a lot also. Those didn't really bother me though (sunglasses helped a lot). My heart and neuro symptoms started to manifest after my first episode (panic attack?), and since I've had cognitive impairment and miscellaneous neurological symptoms, but I've also been on a fair amount of high dose meds for panic disorder. I also have some symptoms others have complained about like exercise intolerance, burping after eating or drinking anything, which have started happening since my initial episode. But I don't know whether the neuro symptoms were caused by the meds or not. But I continued to have them nearly 5 months off all meds, which is why I was thinking it was more underlying (aka POTS or the like). I admit a lot of the symptoms listed on this site for POTS could also be symptoms of regular anxiety which I have a history of, but they have been more severe since my initial episode and the kicker has been that whenever changing postures (either shifting sitting positions and particularly standing up and being upright), my heart rate increases abnormally. Also, what I have read about anxiety is that it doesn't produce exercise intolerance. Cymbalta has made the increase in heart rate not go as high, but the abnormal increase is still there. Also, I did have a positive TTT which showed abnormal (130bpm hr and declining blood pressure) while upright. Anxiety, to my knowledge, would not cause that.

James

Every one in a while, I would wake up from a deep sleep with a pounding heart and forceful heartbeats. Today I immediately checked my heart rate when I woke up and it showed 48 bps. I presume it was below that before the forceful heartbeats, as I assume it was caused by brachycardia and my heart kicking into gear in an attempt to elevate my heart rate. Has this happened to anyone else? Since recently starting Cymbalta and klonopin full time, my heart rate has been unusually low at night (50-60) when I go to bed. It's lower when sitting and standing too in the late evening than it is the rest of the day. I don't get why my symptoms would be different consistently at night as opposed to any other time of the day.

James

FYI, Interestingly I was reading on the lexapro website that SSRI/SSNRIs has been associated with clinically significant hyponatremia, which after looking it up I found it has to do with electrolyte disturbances. Maybe someone with a little more knowledge can look into this, cause I know a lot of you are on SSRI/SSNRIs (including myself).

Here is the link: http://www.lexapro.com/safety/default.aspx

James

I burp a lot and I figure it's because I must swallow a lot of air when I eat and drink.

I haven't mentioned this to my GP because she'll probably tell me that it's another symptom of getting old. This has been her favourite response for several years now.

Or else it's sure to be yet another a symptom of depression, another favourite response.

If she were to tell me that it's in my head, well, she'd be partially correct. It may not begin in my head but I guess that's where it ends up before actually being released.

Perhaps I won't tell her at all because I don't need to be told yet again that I'm a depressed old patient. ha ha

Mary P

Well it it's any consolation I have the burping problem, and I'm 25, so it's not a symptom of just "getting old". I too thought it was due to too much air intake when drinking or eating, but prior to my POTS symptoms acting up I did not have this problem, and I can't say I've changed my eating habits.

James

James, interesting that you mention benzos and ssri's. The ssri's for some reason made it worse for me and the benzos did not seem to help (although they did help with anxiety) me get the whole breath. I guess we're all different. I hope to find something soon to help relieve this. Out of curiosity, which benzos worked for you? My psych just suggested trying valium since that has the most muscle relaxant properties out of the benzos but I hate how they make me feel a bit more low bp, etc...

I was taking klonopin. By the way xanax, although in the same benzo family, I think made matters particularly worse for me. I was short of breath on xanax and having panic attacks left and right, but I seem to feel a lot better on klonopin. I now only take it though when I have my heart races to try and calm down. Just on Cymbalta 30mg though, I was able to exercise 35 minutes a day every day walking up to 3.6 mph on good days. So I hope you find something that works for you. I also had boughts of chest pain off of all meds, which the cymbalta has pretty much taken care of.

BTW how long did you take your SSRI for before you decided to discontinue? I found when I recently started up Cymbalta again after trying to go off all meds that I felt a little worse within a few days after starting it, but after like a month (SSRIs take a couple weeks to take effect), I found those symptoms were helped.

James

I do understand your frusturation when a doc tells you your symptoms are all in your head. When I first developed panic/orthostatic tachy, I became incredibly anxious about my health, particularly cardiovascular since that's where most of my symptoms manifested. But all heart tests came back negative, and since I still showed concern about my heart to my PCP, he diagnosed me as being a hypochondriac and even prescribed an antipsychotic med for me! Needless to say, he's not my doc anymore.

James

yes james i also feel very often like my head is not getting enough oxygen, i use oxygen very very often, i am blessed that i have my own tank and that does help the empty lightheadedness but it doesnt help to open my chest up, only a yawn does that i have been sick with many different things since i was 15 and i am 32 now! i think i have had POTS for around 15yrs but didnt know about it in the beginning, the breathing has only gotten gradually worse and now its just all the time and so unbearable and makes me so tense and upset! well with good reason if i am struggling so hard to just get a good deep breath! thanks to all of you for replying

Radha

Meds can also make a difference in your breathing. I remember on a beta blocker I felt like I couldn't take a full breath. I've read they constrict air pathways or something to that affect. If you are anxious about not being able to breathe perhaps a benzodiazepine or SSRI could help. They helped me when I felt like I couldn't take a full breath. Hope you find something that works for you.

I have times when I shake so hard my teeth chatters but I feel cold. I also have times I am very hot & sweat drips and times my legs & feet are so hot I can't stand a sheet to touch them. Sometimes my legs will jerk when I lay down at night but so far haven't had a problem walking. It seems to go from one extreme to the next.

Let us know if you get an app't with neurophysiologist in Dallas & how it turns out.

My toes will be cold to the touch but they will be sweaty as can be. I wonder why.

I've had shortness of breath just from my heart beating fast after standing up. One wierd feeling I've also had is that it feels like my head is not getting enough air when I breath. Anyone noticed that feeling?

James

1 issue I would like to get people's ideas on is SSRI or SSNRI? Under what conditions should either be taken? Is it true that it is the dumping of norepinephrine (along with epinephrine) that spikes our heart rates that causes orthostatic tachy? An SSNRI such as Cymbalta or Effexor reuptake norepinephrine as well as serotonin so there is more available for use in the body (although they don't "increase" the actual levels). Would more available norepinephrine make things worse, or would it be needed to help "resupply" the norepinephrine that gets dumped so often, as it is the dumping of norepinephrine that is needed to make our hearts work harder to supply the brain with needed oxygen? So, essentially, do people with POTS have too much or too little norepinephrine? I've read one of Dr Grubb's articles and he states that SSNRIs might perform better than an SSRI, but does anyone know why?

Thank you,

James