scarfgirl

For brain fog I also try to help my brain by meditating. I also take out my Mozart CD or some type of classical music and listen to it while focusing on a puzzle or writing with my non dominant hand. It is good to "work" the grey matter as well as allow time to rest it!

Hope clearer days are soon back!

Sadly, one of the most frustrating things for me is that I can't meditate. It seems to be an exercise in futility, and very scary.

The classical music is a good idea.

So sorry. Brain fog can be my most discouraging and disabling symptoms.

I recently had a bad bout of brain fog because I had tried to do too much thinking, reading, and studying (all while lying down). It took several days of extra rest and no reading to pull out of it. I laid in bed a lot and watched brainless tv shows.

Have you ever tried Cerefolin? It has been a help to me with the brain fog. It doesn't completely take it away, but it certainly helps.

Wishing you less foggy days,

Rachel

Is it bad that I have no recollection of starting this thread? I was really frustrated, so I'm glad I got that out. I'm a little bit better today.

I'll look into the Cerefolin. Sounds like it can't hurt, the hard part will be getting my new doc to prescribe it. He only wants to prescribe anti-depressants so far. Won't hurt to ask anyway.

Unfortunately, Zyrtec knocks me out. Right now I'm avoiding anything that makes me even slightly dopey in an effort to fend off this nasty case of brain fog, so the zyrtec/zantac thing will have to wait for me. Would Zantac make me sleepy as well?

@Julie - Awww, I really thought that the antibiotics had been helping your son. Sorry to hear that isn't the case.

potsgirl - do you like your shoes?

It takes me all day to get through the posts I want to read. Since this is the first forum on my Bookmarks, it's usually the only one I even visit anymore. I can make posts, but I can't even go back and proofread them...I just have to hope they make sense. Anytime I try to read anything longer than a couple of sentences my eyes lose focus and I space out completely. Posting takes forever. Phone calls or any sort of real-time conversation I can't do. I can't do anything, even have fun because I lack the brainpower. Can't even watch TV.

When I went off the zoloft and klonopin it was like waking up after a coma. Suddenly I was me again. I could think. Now the brain fog is coming back, it's almost constant. I don't know why and I can't do anything to stop it! I don't wanna lose my life again, I just got it back!

During our visit, he said that the antibiotics help some patients because their dysautonomia is caused by an underlying unidentified Lyme infection. Others may have a similar infection that we haven't identified and therefore can't test for. He went on to say that the response of his patients to the antibiotic therapy has been overwhelming positive.

As I've probably said before, I don't buy the Lyme disease bit, but I am interested in further results from this guy's tests with antibiotic therapy. Has he published anything yet about his theories or findings?

Inflammation is something I've wondered about as well. I've always had bad allergies, and just as allergies are my body inappropriately reacting to stimuli, I've often wondered if POTS wasn't the result of a similar overreaction of sorts, and that allergies weren't another symptom instead of a separate issue. Especially since I don't seem to be allergic to specific things. Is there any way to go about testing these theories? I made a post earlier about tests I needed, and testing my inflammation response is something I'm interested in. I can't concentrate well enough to get through all the replies, much less read the article itself to find my answer, so if someone could make a very simple response along the lines of "Stacy, you need to have X examined or try taking Y and see if it helps" or "Stacy, inflammation is too intricate a bodily response for a single test to tell you much" I'd appreciate it.

Can I ask a few questions?

Why aren't you taking salt? Most people on this board take extra salt so why do you avoid it?

Although I can't remember why at the moment, I know it's important to get your thyroid tested regularly b/c it tends to shut down on people with POTS (or maybe all form or dysautonomia? I don't know). Was it through periodic testing, or did something else clue you into your thyroid problems?

Can't you get iodine without adding salt? Iodine is artificially added to salt, so I'm sure there's other ways to get it, though I have no clue what they are.

I don't really have any sort of answer for you, but any small change for me can throw my body out of whack for a bit. When trying anything new I always give my body a few days to adjust before I decide that something is bad for me. Feeling freaky (especially shakiness and stomach upset) seems to be my default response to changes in either my environment or my internal chemistry.

Some of us are just looking for the cause/root of the "S" (syndrome) in POTS.

That's it exactly. Having a label for my symptoms doesn't do me any good. I want to know WHY I have these symptoms. I'm willing to treat the symptoms, for now, but I hope to one day find out the reason behind them and treat that instead.

I have questions that doctors won't try and help me find the answer to. For example, could my symptoms be caused by low blood volume, inability of my veins to constrict properly, or something else entirely? Can allergies and inflammation be causing or at least seriously aggravating my problems? Reading these forums gives me questions that nobody will help me answer. Doctors just sidestep my questions and I usually let them b/c by the time I get through the waiting room I'm pretty much a mindless zombie that's doing good to be able to read off the cue cards she prepared the day before.

Standing catecholamine, aldosterone, and renin. I'll check up on those. Can you tell me specifically what those tests would reveal? Is aldosterone the test that had me misdiagnosed with Addison's, and would my taking florinef mess up that test? Same question with taking a BB and having the standing catecholamine?

Any other recommendations for tests from anybody?

It makes me to see I'm not the only one who's had to take countless EKG's. I'm beginning to suspect doctors need them for insurance purposes, since I keep telling them I've had them and don't need them, and they keep insisting on doing it anyway. Also, is there some rule that says you can't call the doctor that gave me one three weeks ago and get the results from him instead of making me get all sticky again?

I stopped having periods because I was being run down for up to three weeks out of a month because of the stupid things. I really think menstruating monthly is abnormal, and an unnecessary risk/aggravation for people who already have health problems. I'd talk to your doctor about getting a prescription for the pill that won't include monthly periods. You can try the shots too, but those really messed me up.

As for the sleep disturbance thing, I have those too. They were really bad before diagnosis and treatment, but they still can be aggravating. They happen to me in that twilight phase, where you're not really quite asleep yet, but you've already tuned out your surroundings. Never looked into what causes them, but I suspect it's epinephrine or some other catecholamine going funky on me.

As someone who went through a simultaneous health crash/divorce recently, let me offer my sympathies about what you're going through and reassurances that it WILL get better. ***** to see another person having to go through this though...I wouldn't wish this on an enemy much less someone I admire.

I've PM'd my contact info. I have no safety line to offer, but I do have one of those little donut-shaped life savers.

((((((((((((((Nina))))))))))))))

Here's hoping your remission keeps going.....hopefully forever!

I go through what I call remissions, but what remission for me means is when all the other weird crap (painful bloating, coathanger pain, vomiting, brain fog) takes a holiday. I'm still tachycardic without meds, but the tachycardia just doesn't seem to effect my quality of life as much some times.

I agree with Mack's Mom.....that's a risk you don't need to be taking wareagle.

It would depend on if you have much upper body weakness or coat hanger pain. Rowing Machine is the best if you can handle it, but not everyone can. I'd try one out before buying one.

When reading this forum, people are always talking about all these tests that I've never heard of/had done. Just glancing at some of the posts on the first page mentions testing things like Chromogranin A, adrenal hormone output, C-reactive protein.....all things I've never had tested. At first I just assumed a lot of the tests were people taking shots in the dark, something I couldn't afford to do but was glad others were doing, but now I'm wondering if I'm missing out on something important that my doctors should know to check but don't. I've had the tilt table test a couple of times, an EKG about 20 times, regular thyroid tests, and recently I did have a Vitamin D test (which I'm grateful the doctor suggested because I was VERY deficient), but that's it. Before I figured out I had POTS I had several other tests, but don't really remember what they were. Now that I have a diagnosis of sorts, doctors never want to test anything, they always have the 'try this med and see let's see how you're doing in a month' approach, and no one seems interested in what is causing my POTS. Should they be? Worse, now that I'm back in GA I've had to get all new doctors. I'm seeing a 'specialist' in Alabama that seems to have a set routine down--I don't think he varies any from patient to patient, and all my other docs are pretty ignorant of dysautonomia in general, just doing stuff whenever I ask them (I hate them all, but you don't get to be picky when you live in the middle of nowhere).

What tests should all POTS/dysautonomia patients have? Both for POTS specifically and for the complications that tend to come with it. I don't want to miss anything that could better clue me in to what's wrong. I have a bunch of symptoms, but no clue whatsoever causes them.

((I'm having MAJOR brain fog right now and my own post seems like babbling nonsense. Feel free to tell me if I'm right.))

Oops. I clicked 'team' b/c I'm always seeing more than one doc, but I'm not sure that's accurate since team seems to apply working together, when they all want to try and boss me around individually w/o consulting with anyone else I'm seeing.

I haven't found one doctor yet who knows what to do. The cardio did all the testing then prescribes a bb that I don't tolerate, and supposed to go back in a year. Well, I can't keep letting one year go by after another! I have an endo that has tested the possible endocrine reasons, but when all is somewhat normal, they just drop the issue. An internal medicine doctor just looks at all my routine labs and says fine. The only doctor that has actually cared was my new female gyn recently. She just kept saying, "that just isn't right--you should not have to live with that!" I could have kissed her feet for acknowledging(?) that I have a serious problem! She then made me an appt. with a neuro(local), so her intentions are VERY good, I just am not so sure some local neuro is going to help. Oh yea, he's going to want to do the usual testing so he can say he did something, but i would be shocked if he wanted to actually think outside the box. But, who knows.

This made me LOL, because the doctor I saw when I lived in Seattle about everything was a OB/GYN, that I started seeing based on recommendation from a friend. Took her a while to get out of the habit of trying to put me in stirrups , but other than that she was a great doctor who really knew her stuff about POTS, mainly b/c she had no problem reading all the research material I gave her.

Before POTS I weighed a consistent 117. Since POTS I've gotten up to 130 at one extreme and down to 105 at the other. It does suck.

This is a big problem for me right now, and a lot of the drugs used to treat anxiety are counterproductive in my case, but none of the psychotherapies help at all, so I'm still in the dark as to what to do about it. The anxiety itself is really only a problem when trying to sleep or trying to wake up, other times I can just ignore it.

@flop - You're supposed to blame things on brain fog

I think Klonopin made my problems worse. It may have helped me sleep at night, but it made sure I couldn't stay awake during the day.

They took me off Klonopin and Zoloft for the study, and while my insomnia has gotten worse, I can actually stay awake and focus a little during the day.

I had to cancel the study...thought I was catching a sinus infection and didn't want to be stuck somewhere where I couldn't do my little routine. I'll reschedule in the next week or so.

What would an anti-inflammatory diet look like?

If it's a feasible diet to follow out in the boonies (I already had to give up vegetarianism) I'd be willing to try it.

The ones I've seen are one-size-fits-all, in other words wont-fit-me. Is there a vest that will fit on the super skinny?

Took Metamucil for a while, now I'm taking Benefiber. Never had problems with either one. Couldn't imagine it causing a problem either, unless you reacted to the artificial coloring/flavoring in it?