masumeh

You can do a blood test to check for sodium and potassium levels. If they are not low, however, you might still be dehydrated....at least that's my understanding.

Oh, yeah, forgot. The salt + potassium relationship....they go together, like they are attracted chemically or something like that...I forgot exactly how...but sodium and potassium will always have a certain ratio relationship. SO if you lose salt, your potassium flies out the window too. Potassium dumpers (which occurs rarely in a particular kind of diarrhea) will experience corresponding dumping of sodium (just like we lose potassium due to sodium dumping). Yeah....what else...I'm going brain dead here. NEvermind, I'll remember later. Oh yeah, so you have to suppliment potassium too, not just salt. Great news for those of us who have IBS problems and cannot tolerate fresh vegies and fruits. Nt.

How to know when/if you need to add sodium & potassium... Let me take a stab. My POTS doctor simply asked me how much I pee. Do you experience this: You are dehydrated (black under the eyes, dry lips, thristy feeling), so you drink a glass of water. Twenty minutes later you pee it all away, and remain just as dehydrated as before? OR Do you have to pee frequently? (LIke a diabetic.) I know that some doctors use intake:output measurements (i.e. measure precisely how much fluid you drink, and also measure the pee). If it's the same, you are dumping it. But the frequency is an easier way to tell. Some POTSers really suffer a lot from peeing all the time, even wakes them up in the middle of the night. They can also measure blood volume. Hypovolemic POTSers are probably dumping. But my doc is very experienced, and he only asked me if I feel like I pee a lot. Then he prescribed Florinef, a steroid designed for Addisons disease patients to suppliment for hormones that the adrenal glands should produce (but do not due to adrenal dysfunction). Florinef is a common med for POTSers, but it was not designed just for us, and therefore has many ingredients that we really don't need. So it also has side effects. (I personally could not tolerate it; it made me completely psychotic....really wierd experience.) Addisons patients are "salt dumpers" because of the adrenal dysfunction. We are too. It's just another internal organ that should be regulated partially by the autonomic nerves. Addisonians also expereince "episodes" by the way, which look like siezures...only theirs can be fatal so they have to wear alert bracelets. I had an adrenal function test to rule out Addison's Disease some years ago. They said my adrenal gland was not functioning properly (low cortisol levels in my blood indicated this). But then when they injected me with ATC (hormone produced by the pituitary gland near the brain) some weeks later, the levels rose adequately. IN fact, they said that on the second testing, the baseline (before ATC injection) was high. So they just said: You're normal. Go home. But actually the low and high were probably POTS related dysregulation of the adrenal glands. I had undetected POTS at the time, which is why they were testing me for other stuff. Cortisol (which is released by the adrenal glands) is responsible for blood volume. Low cortisol means low blood volume necessarily. Increases in cortisol during pregnancy due to hormone sharing between a female fetus (even a male fetus to a lesser degree) during the first trimester (before placenta blocks them) helps to raise the mother's blood volume. So many POTSers enjoy a sort of "eye of the storm" during pregnancy due to cortisol increase and blood volume increase. I experienced that during my pregnancy with my daughter. I didn't faint for two months (this is like between multiple daily fainting periods). SEcond trimester, I immediately started to faint again. THere's probably lots of other stuff, mechanisms, etc. going on behind it. We're just so complicated. But that's the part I know about.

Just wondering, how much water do you have to consume to make the head symptoms go away? Two ro three tall glasses gulped down really fast usually did the trick

We had a thread like this before...and after I read many recommendations for MIO, I ordered one online. However, when it arrived, I was really disappointed. It was totally broken or something. I know I should have returned it and gotten my mula back, but I was just too lazy bc it was from overseas and the shipping would have cost as much as the watch. But anywho. I have a Reebok heart rate sports watch. It gives all kinds of funky readings though. When it's tachy, it gives just basically any wierd reading. When it's normal, it gives an accurate reading. Like it gives me readings like 195, then when I take my pulse manually (counting for 15 seconds, then x 4), I get like 120 at most. So I think probably the old fashioned manual technique is the most reliable. I still wear the Reebok for the sake of the seconds hand though.

Maxine, I have to give you kudos for understanding all the complex interactions going on between various disorders in your body. It's no small feat. I'm glad also that you found a team of doctors who can really grasp these issues as well. Sometimes, I guess, things don't just go away as we would wish them to....the best we can do is cope, which you are doing great it seems. I didn't know that EDS could cause POTS. My cardio recently told me that my hypermobile joints are related to my Mitral Valve Prolapse...which sounded suspiciously like EDS to me, though I've never been diagnosed with it. I'm scheduled to see a rheumotologist when I get back home (to Saudia). Is that the right field to diagnose the EDS, if I have it? My ortho for my knees recommended me to the rheumo for my wrist, ankle, spine, and shoulder problems. Hang in there! And I hope your root canal goes smoothly and has a speedy recovery.

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.

Speech pathologist...that's cool! We have so many professional fields mixed into this forum....it's really great. My 5 yr old daughter also stutters. She's bilingual, and she stutters in both Arabic and English. She might just be picking it up from me. But I noticed that it waxes and wanes with her emotions...specifically if she's nervous, like in front of guests, she'll stutter a lot more. It's sometimes so severe, she will repeat the first few words of a sentence for several minutes...and she gets so frustrated when we try to guess her ending. We all get fed up waiting for the stutter to pass. Do you have any tips? Like how can we prompt her to stop the stuttering? The only thing I found so far to help is not commenting on it, since that seems to make her more nervous. Sometimes I also try to sooth her more, like rubbing her back and holding her on my lap when she's trying to talk to guests and stuttering a lot. Now that she's a bit older, I tell her to think about the whole sentence that she wants to say before she starts it. That seems to just make her feel that I don't want her to say anything though. Ideas?

Are you allergic to pollen/outdoorsy stuff/etc.? But yeah, the work itself would do it. HOpe you feel better fast!

...I knew somebody else in the world must like that stuff for it to still be on the market Go V8 Ok...my cheesiness is over for the day

Echoing back here...but go with that gut feeling...No offense to your "willing to learn" neuro, but it is best for you to be treated by an experienced doctor, I mean experienced with POTS. It really makes all the difference.

Looks like you've had a long road to diagnosis. I hope your treatment goes smoothly. Sounds like you finally have the right medical support. Welcome to the forum!

Anybody read about POTS and stuttering? I've never come across anything. But incedentally...are you left handed? In my bio psyc course we learnt that right brained language centers (some individuals have their center switched around a bit, and tend also to be left handed though not always) are associated with stuttering.

Never heard of the potentials thing you mentioned. But I had an EEG. My neuro (who thought I had a conversion disorder) ordered the EEG to rule out epilepsy. That was at the beginning (first year) of having POTS, before I knew about the disease (I was diagnosed 4 years later). EEG results were normal, which further convinced the neuro that I was "traumatized by an early miscarriage and in need of psychotherapy". He said my fainting was hyperventilating. Anyways... Doctors can be sooooo annoying. Hope you find a good one soon.

Also wanted to add that I have a sister-in-law and a cousin who both do NOT have POTS, but they do have acid reflux for many years. They both got to a point where the acid had scarred and tightened the asophogus near the cardiac sphyncter (sp? no idea). So they required surgery to enlarge (using a baloony thing) the asophogus. They would sometimes choke on their food, like it would get stuck near the stomach, past the place where the windpipe and asophogus cross. So they could breathe, but they couldn't swallow anything else. X-rays showed the food lodged there, and endoscopy confirmed the asophogus was just too narrow to allow large bits of food (such as red meats) to pass. So I guess there are a few possiblities besides POTS.

I think this is a POTS symptoms. I have it also (and I have nothing but POTS in terms of chronic illness). For me, it's like things go down slowly, I can feel it as though there isn't enough space in my throat, etc. I just don't eat when it gets like that. Usually it happens when I'm really POTSy (i.e. dizzy, just had an episode, tired). It also happens almost every night. I just don't eat at night. I also found that when I DO dare to eat at those times (which is soooo uncomfortable), I cannot digest the food further down the GI track either (i.e., I'll get constipated). I made sense of this symptom this way: the GI track is suppose to work involuntarily to move food down the various tubery (asophegus, small intestine, large intestine)--but for us those involuntary muscles do not coordinate or contract the way they should. I know that to be a POTS problem, or a possible one (everyone has damage in slightly different areas of the ANS nerves after all). The only thing I found to help (like when I HAVE to take my pill at a time when I cannot swallow well) is to sit down and relax. That seems to help. Of course, there's a choking feeling when things go down so slowly. To the natural reflex is to tighten up and cough. Just need to do the opposite. Relax and just remember that this is normal for your system. It will go down (maybe with a little extra water).

I had pneumonio and a PE the first month I had POTS, so although that differs somewhat from your diagnosis there are some similarities also. REST! That's really the most important thing. Your body has a hard time healing due to POTS weakening your immune system. Try taking vitamin D and C to boost your immune system. Also, cyanne peppers, fresh ones or in Tabasco sauce, can help clear out your lungs. They also have like 2,000 time more vitamin C than most fruits. Tell somebody to get you some fresh hot peppers (really of any kind, but especially the red ones) and take out the seeds. Just eat the fleshy part (with some carbs to absorb the acid). You can also gargle with water & tabasco sauce (like a glass with a few drops). I have IBS problems, but I find that without the seeds, I can tolerate hot peppers fresh (not dried). And it does help kick out infections, especially in the respiratory track. Also, just the reassure you that it's normal and it will pass, any kind of illness brings out the POTS symptoms more, especially fatigue. But when the illness passes, the POTS flare-up is likely to subside. It was really difficult to be so sick when I had the pneumonia, PE, and POTS all commorbid. But I just had to tell myself, "This will pass...just one more day, just one more minute, this minute is already gone, the next will also pass." Umm....yeah, and a lot of coughing, moaning, and strangling the nearest person to me Hope you feel better soon!

Dizzigirl, can you tolerate the pills/shots that stop menses? It sounds like you're a prime candidate for that, since your symptoms are so severe in connection to menses. That much diarrhea is like worse than food poisoning. You better see an OB/GYN ASAP, probably in consultation with your neuro, in order to control this. Hope you find some relief soon! masumeh

Wow. My heart goes out to you. It's obviously a difficult situation. Yes, that would feel like being trapped, imprisoned in circumstances. Maybe your efforts should be focused on how you might turn the situation to your benefit. I mean, it is not always possible or even in your advantage to leave or divorce. Since you have a child together, you have obligations to her, to provide and care for her. THat might not be possible alone. But you must never let your husband know that you are depending on him....that gives him a green light to take advantage of you, step on you, etc. Like, you have to make him feel that you WOULD leave, if he went too far. Otherwise, what will stop him? Maybe if you went to your family's home for a few days, after making it clear to your husband that his behavior is totally unacceptable. Then make a condition that you will return home ONLY if he concedes to attend family therapy with you. A therapist can work with you and your husband to break the cycle of criticism and verbal abuse that you seem to be locked into. You know, it is obvious from his "chipping in" and caregiving that he does love both you and your daughter. So that means that there is something in the relationship worth salvaging. Also, if he is the biological father of your daughter, then he will always be a part of your life, even if you divorce; and that means that you need to be able to work together without arguing. My father was always very critical and verbally abusive. He had a cycle: Verbal Abuse (I mean sever, like one time I was late for high school, and he told me, "It's an insult to have you as a daughter"); Reconciliation (like acting nice and saying, "I don't know why we aren't better friends"); Extreme Praise (like, "You are the best daughter in the world. I wish I had ten of you"); then Verbal Abuse and it all goes over and over in that order again and again. When I realized his cycle (as a late teen), I was able to cut through it. When he hit the Extreme Praise stage, I would do a lot of housework, cleaning, vaccuuming, etc. Then he would be too embarassed and pleased with me to insult me. Once the cycle was broken for about 9 months, it never started again. But he other problems. He was very controlling, and that got worse when the insults stopped. It was like, he just couldn't be at peace. He just had to be devilish or something. But I think it's because he is deeply afraid of loving people, and always pushing them away and trying desperately to make them stay exremely close at the same time. I think it's because he lost his mother when he was like 10 yrs old. Anyways, he really benefited YEARS later from psychotherapy. My dad is now over 60, and I can confidently say he is the most sane and normal in behavior that I have ever known him. Anyway, what I'm trying to say with this anecdote is that your daughter is also going to suffer from your husband's problem if he doesn't change. You can help him change by: not accepting the problem; and coercing him to accept therapy with a good family counselor. In the mean time, you might want to try to keep your independence, financially and so forth, as much as you can in case he is not able to commit to change.

DId your docs try an adrenal function test yet? Sounds like your salt wasting (i.e. peeing every drop of water out for no particular reason) is really severe and causing a lot of secondary sypmtoms due to dehydration (i.e. nausea, muscle cramps, can be from simple dehydration). Maybe what you have is POTS. But maybe it is Addison's Disease. To check this, they give you a shot of a hormone that the brain produces (ATC), and take blood three times to test the reciprocal hormone released from the adrenal glands (cortisol). You will probably need florinef to hold some fluids in, whether you are a POTSer or an Addisonian. HOpe you get answers and help soon!

Did anybody say V8 Juice yet? It has even more sodium and potassium (electrolytes) than Gatorade. Does anyone else here like the stuff? Also I found that certain drinks make the fluids go faster no matter what I try to drink to offset the salt wasting. Like, ginger, hot chocolate, pepsi, basically anything caffienated will make me lose all the water I drank that day. Don't know why.

Chiagri malformation doesn't require an accidental injury. It's something people are born with, although it might not affect their health for many years (thus go totally unnoticed). Maybe MightyMouse or another forum member with congenital complications/causes of POTS can better describe it.

my POTS specialist tried me on Butcher's Broom and Licorice Root suppliments to reinforce my vasoconstrictor med (Midodrine) because I was taking the most I could tolerate of the latter. I couldn't tolerate either supplement. I thought: This can't hurt, if it doesn't help. Thought it was going to be totally ineffective. But actually, the Butcher's Broom gave me horrible IBS problems (crampy, stomache pain, not able to eat anythign). THe Licorice Root actually increased my POTS symptoms (fainting, fatigue, dizziness). one of the nurses at my doctor's office had POTS, and she does not take any Rx meds. She says Butcher's Broom and Licorice Root are all she needs to keep the symptoms at bay; however she warned that her case was very mild and she never fainted from POTS (she had migraines and fatigue). guess everyone's different.

Lots of folks seem to have GAD or PA or something related (agoraphobia or what not) to anxiety commorbid with POTS because they have hyperadregenic type POTS. I think this is also the type of POTSers who get the excess sweating, which you mentioned having even prior to your initial crash. You might want to get an MRI to check for congenital chiagri malformation or other deformities in the spinal column that can affect autonomic function and produce POTS. I mean, since you had some symptoms present since childhood, you might have that type of POTS. Maybe an endocrinologist could help you sort out hormone dysfunctions too...then you might understand the way your meds are interacting with your POTS (if it's hyperadregenic type). Maybe if you get POTS under control, it will alleviate your PA and vice versa. If you read some of the patient stories on this site, you will find that lots of POTSers had mild, overlooked symptoms for years before actually crashing. This disease is still SOOO mysterious, it's hard to say exactly how it starts or why it gets worse and better. The only thing I know confidently is what works for me. Trial and error. Trust your own analysis and experience, etc.

I don't know how norepinephrine and serotonin are involved in the tachy. But my cardio (who specializes in POTS) explained that my tachy (I do NOT have hyperadregenic POTS, btw, so my nore and sero aren't much higher than a normal person's) is caused by the normal functions of the cardiovascular system. My blood vessels leak abnormally; blood pools in my calfs; lack of blood in my head triggers the heart to try harder (tachy); tachy doesn't work so I faint (which is the body's way of forcing me to lay down so that it doesn't have to fight against gravity to get blood to my brain). Some other things that happen during my fainting episodes are due to shock from high tachy (like convulsions, light sensitivity, sound sensitivity, etc). Sounds like you will have a difficult path confirming your POTS, if you have it, because it is complicated by your psychiatric history. Not sure that meds can induce POTS, unless they damage the autonomic nerves (some surgical procedures do). But they might produce POTS-like symptoms or side-effects that resemble POTS. Do you have some of the other, odd, POTS symptoms? Such as nausea, light sensitivity, etc?