Sak

I wish the best of luck to your son, i understand how frustarating it can be. I have had a bad experience with the drug, Zoloft, before (It made me feel horrible and crazy) so I am very scared to try any other medictions as well. My Doctor is Dr. Pennington, and hes a Cardiologst. I hope everything turns out alright with you. -Sara

My experience has been that SSRIs worsen brain fog. The only effective medications I've found for it are CNS stimulants. Unfortunately, when they wear off, they tend to exacerbate the physical symptoms of the dysautonomia. This is something I'm learning to live with. With Adderall, at least I can work well for about four or five hours a day, as opposed to zero.

"Is your wife on drugs, all her tests are coming back normal. is she psychotic?????? Maybe its just vertigo, maybe she needs attention????? Is everything ok with your marraige."

Unfortunately, this kind of attitude is all too common. Medical science isn't advanced enough to have quick tests for our ailments; and when all the usual tests come back normal, ER doctors and nurses are wont to chalk it all up to something psychological. "Maybe she needs attention" is the most comical bit I've ever heard; yeah, people have siezures from lack of attention all the time, don't you know?

my hubby seems to be able to see a bad spell coming on me. he says i just look funny, and sure enuf, bam. i have absolutely no idea what triggers them, or keeps them at bay. if i did, i stay far away from the triggers tho! morgan

Triggers can be anything, even subtle things that bother no one else; someone mentioned changing barometric pressure a while ago. The ANS of dysautonomics is like a gun with a hair trigger, or nitroglycerin; it doesn't take much to set it off.

I've considered parasites as a possible cause of my own problems. I need to do a cleanse and use some black walnut to test the theory.

The ANS instability of dysautonomia is capricious and often unpredictable. Some days I can do all the right things and still wind up feeling like crap. On some bad days, the Adderall helps get me going; on others, it just makes me nervous and fearful.

But one caution I'd like to give on this medication: keep your water intake up! Midodrine or stimulants will cause major tachycardia if you don't.

Midodrine is a vasoconstrictor; I'd say the risk is comparable to stimulants, which is low unless you have underlying heart disease. Give it a try.

I'm not a doctor or pharmacologist, so I have no idea about interactions. If Dr. Grubb isn't aware of any, there probably aren't any.

I think I'm in the minority in that chest pain has never been a symptom for me. My heart's been up 170BPM, and I've not felt any pain.

Not-so-easy-solution: a whole-body suit or a room wherein pressure and other environmental variables are kept stable.

Wild; thanks.

I'll have to investigate this further.

"Twilight sleep" generally includes an opiate like Demerol. Opaites drop BP, which can result in severe tachycardia for POTS people. Vicodin used to give me panic attacks.

The cause(s) of my OI have never been pinpointed. Today, I bumped my shin against a doorframe and was reminded of an injury I received at about age 14 or 15.

It was in winter, and I slipped and fell and smashed by left shin against a large tree root. Ever since then, an area of my left shin just below the knee has been slightly indented to the touch; and sensation in that leg below the affected area has been diminished slightly. When I touch the area, I sometimes get a tingling-burning feeling. There's obviously some nerve damage there.

But today, I was rubbing the injured area (after hitting it on a doorframe), and when I pulled out on the skin, my heartrate dropped after a few seconds; and it sped back up after I let go. I was shocked. The effect is repeatable. Does this make any sense to anyone? Could the probable nerve damage in my leg be related to my OI?

Yes, it can, indirectly. Magnesium can lower blood pressure, which can cause tachycardia in those with POTS.

Generally speaking, unless you have some major cardio damage, arrythmias are harmless; the heart exhibits umpteen variations over the course of a day. It's not a machine; it's part of a living biological system that's naturally dynamic.

Even after you find a treatment regime that works, you'll still have bad days; I have them. On these days all I do is lay in bed and constantly check my pulse, afraid that something terrible is about to happen. It's an old habit I sometimes lapse into even on good days.

I have an uncommon blood type; I once donated some while in college, and it put me on my *** for a week. No exagerration. For those whose blood volumes are already low, donating blood could be quite dangerous.

In my experience, Zoloft INCREASES brain fog and sleepiness. Even 50mg is enough to make me yawn.

OI caused by dysautonomia is incurable; even the root causes are shadowy.

I've experienced significant improvement with water, salt and diet changes; but I'm not cured, and can't be. I deal with dysautonomia on a daily basis still. I wake up dehydrated and dizzy, and take water and espresso to help. My ANS is a volatile animal; on different days, it demands a different level of control. There's a quote from someone's website--I don't remember whose--that says "You can't replace a dynamic system with a static one"; I know that's so true. When the ANS goes haywire, you can't simply take a medication to right it; the regulation of the body done by the ANS is constantly-changing, and you have to be aware of your own reactons to things and adjust your strategies hour by hour sometimes.

"I prefer Chex mix too ...however, all the Chex products contain gluten , includiing corn and rice chex."

Ahh, but you can get wheat/gluten-free Chex-like mixes at hippiemarts and wholefood stores. I eat them on occasion.

On SSRIs: my experince with them is mixed. On the one hand, they do help with anxiety and fast heart rates; on the other, they kill my sexual response. I can't tolerate that; but I am thinking of maybe adding 50mg/day of Zoloft to take the adrenaline edge off the Adderall. Adderall is the smoothest of the amphetamine products available, but when your system is already volatile, it can cause jitteriness and tachycardia (my HR is about 100 on it; usually, it's 80-85). I need the dopamine and vasoconstriction; not the adrenaline.

I've managed to control most of the autonomic symptoms with water, salt and diet changes. But I take a stimulant for the fatigue and brain fog, which are treatment resistant; without it, I'd be physically ok, but mentally crippled.

GABA abnormalities are one possible cause of POTS. GABA has also been implicated in alcoholism.

The thing about POTS, and dysautonomias generally, is that they seem to arise from a variety of sources, and these sources are not readily obvous. An abnormality in a single neurotransmitter is not often the single cause; more often, it's a symptom. The exact causes of my own OI have never been pinned down, but low fluid volume and vasodilation are definitely involved. These, in turn, are probably caused by something else.

Yes, I'm familiar with the emotional fog. It's not depression, really--just a long gray train of apathy, where each day blends into the next. You don't experience a full range of emotions; sad events and happy events alike fail to move you. You feel stuck in one place.

"Just a panic attack"...the words of someone who has never had one.

They're debilitating; I had them on a weekly basis for three years, and they made me a recluse. I never wanted to be more than a few feet from a phone, so I could call the paramedics; every time I thought "This is the one that will kill me." Adrenaline triggers the deepest kind of fear we can feel; the panic mode is intended to make us run from danger, but that reaction can turn against us. Panic always made me want to run--I couldn't sit or stand still; I felt like there was a titanic weight above me, ready to fall; and I had to run to keep away from it.

That is wonderful. I am not familiar with adderall, what exactly is it?

Paige

Adderall is an amphetamine preparation; it contains four different isomers of amphetamine and dextroamphetamine. It's usually used to treat ADHD.

Talk to your doctor about it, but don't get your hopes up too much; whether or not it helps you will depend on the exact cause and nature of your dysautonomia. Stimulants work well for some, and only worsen symptoms in others. But if you have vasodilation problems, it may well help.

My particular kind of OI seems to be caused by low fluid volume and extreme vasodilation. The former I've been treating with lots of water for several months now. The constricting effects of the amphetamine have lessened what dizziness remained, and probably now my brain can get enough blood to function properly. It's a low dose--10mg pills, with a total of about 6mg of actual amphetamine base--so I know the increased energy and mental clarity isn't due merely to the stimulating effects of the drug. That may be partly it, but I suspect the vasoconstriction is what's helping the most.