Things About Me, Part 1

[iconoplast]

Since most of the people that know me in one way or another haven't made it on to the Dreamwidth boat yet, I thought I should give some background on myself for the inevitable new people I get to meet.

I'm disabled. This is not always readily apparent, either online or in person. Sometimes I'm in a wheelchair, sometimes I can walk for a few hours without significant impairment. I've had a progressively debilitating muscular/neurological problem for years, but only received a diagnosis a few weeks ago. It's called Postural Orthostatic Tachycardia Syndrome (or POTS). It's essentially a failure of the autonomic nervous system (that's the portion in charge of things you don't have to think about to do, such as breathing or blood circulation). Here's a relatively quick list of my symptoms: severe myofascial (muscular) pain, exercise intolerance, extreme fatigue, muscle spasms, spasticity, fasciculations, cold extremities, disorientation, shortness of breath, muscle weakness, severe tremor, visual disturbances (I see flashing lights around the edges of my vision that look like a cloud of fireflies or the sparks flying off of a sparkler), nausea, vomiting, brain fog, short-term memory loss, problems finding words, depression, insomnia and hypersomnia (a lovely combo, I might add), sleep apnea, fear, nervousness, orthostatic hypotension, ataxia/poor coordination, and difficulty concentrating. I think I remembered everything in there. I've been repeatedly misdiagnosed with things ranging from anxiety (it stopped once we started treating the POTS) to malingering. I've had supposedly reputable neurologists tell me to find God and "examine my lifestyle choices" because medicine could never help me, I had one tell me that I was eating tainted chickpeas (except that hasn't happened since the 18th century and that was in Spain)... it's been an interesting journey in to the vagaries of medical science. I also have high functioning Asperger's syndrome, though that's a subject for another entry on another day.

The amazing thing in all of this is that once we discovered the actual problem, we got rid of most of those symptoms. We're still fine-tuning medications, but I went from nearly bedridden to shopping for a gym membership literally overnight. It will still be a while before I can do things such as exercise given that the medications are still being adjusted, but I will be able to, and that's something I never thought I'd even get to consider again. An even happier realization is that I'll be able to work again. I'm a visual artist, and an artist with a severe tremor can't accomplish much. It makes it a bit hard to draw or paint, for one.

I'm happy to answer any questions that anyone has on this. Feel free to ask away!

Comments

[brigid]

I get that kind of visual disturbance when I have migraines, right before I go blind. WHEE.

I'm glad your illness is being treated. After decades of being fat and oily I'm now being treated for PCOS and am losing weight like crazy and my skin and scalp are COMPLETELY different. I no longer have to wash my hair twice a day to not look like an oil slick. It makes such a huge difference.

[iconoplast]

Yeah. When they first started, most doctors insisted that they had to be migraines (once they decided that it wasn't my retinas detaching). The funniest part of that is that I used to get migraines and still do maybe once a year. I get visuals with those too, but that one is more like seeing sheet lightning. Aside from the vague concept of "extra light" they're nothing alike, but that never stopped any of the inept doctors from insisting that they understood how migraines would be for me better than I could ever hope to. It's a similar cause physiologically, I'll give them that -- most of my symptoms are ultimately caused by blood failing to get to my brain due to impaired vasoconstriction. So it's kind of like a migraine, but I would have thought the total lack of associated headache might have been a clue for them that something else was going on.

I'm quite glad too, on both of our counts. I hadn't put on too much weight with this (about 35 lbs) but I've already lost close to 10 in the last 2-3 weeks without any change in activities, so that's heartening. A diagnosis is such a lovely thing.

[brigid]

I don't always get pain with my migraines! Which is insane! but very very welcome, actually. LOL

I like your icons, btw.

[iconoplast]

I always did, but even then I can't imagine that other symptoms plus never having pain leads to saying "Oh, it's just a migraine," in any sensible way. =) Glad to hear that you're sometimes spared the pain though!

Thank you very much. At some point I'm going to break down and buy a paid account. 6 will never satisfy me.

[jeshyr]

I'm just wandering in via no_pity - hope you don't mind! I wanted to ask about the meds you're on for your POTS. I have NMH and POTS as part of my "currently we're not sure what you have" problems, which I just posted in my no_pity intro. I take Florinef, salt tablets, a beta blocker and ... something else too? ... to try to keep my blood pressure up and it certainly helps, but not enough. I can't even sit up for long without my blood pressure dropping enough to give me symptoms that last for ages! So I'm curious about what meds are helping you and how you're going.

Best of luck! Yay for diagnoses!

[iconoplast]

Not at all! I'm on a high salt diet in lieu of salt tablets and so far that part is working for me. I've also got a beta blocker and they've got me on Wellbutrin along with that. At the moment I've also got oxycodone for the muscle pain and baclofen for the muscle spasms -- I'm hoping that if we get the rest of the POTS symptoms under control the muscle pain will go away with them and let me stop the oxy at the least. I'm going to see a specialist at the Cleveland Clinic in about 6 weeks and I'm hoping I'll get some good ideas out of that. I've also been looking at Provigil; I was on it for a while pre-diagnosis, but my insurance company threw a fit over it (it costs something absurd like $20/pill, so I can't say I blame them). I'm hoping that now that I've got something concrete for them that they'll give it back. It's actually a medication for narcolepsy, but it vastly improves vasoconstriction as well as chasing away brain fog.

As to your low blood pressure, have you tried an alpha blocker as well? A lot of the research I've done has suggested that it can be rather effective. Mine's been holding pretty steady at 90/60 or so, which means I haven't had to try it yet, but that may change if we have to up the beta blockers further.