This is long...I'm sorry....it's been a really emotional and long couple of weeks, and I don't have friends to talk to IRL. You guys are it......
I ended up in the hospital for 13 days- got home yesterday , needing a cardiac/heart catheterization due to some abnormal results from a test last April during that whole lung blood clot thing. I've been on blood thinners since, and will be for life due to a clotting disorder they were "thinking out of the box" enough to find- great job for not just looking at the obvious, but finding the reasons- probably saved my life in the future. Nurses, aides, techs, test staff all great.
On the third (10/3-- hey, I know dates again !!
Off of Topamax- get into that later) I was having chest pain, and with the lung clot (pulmonary emboli that was very large, and should have done me in) I've been told to get all of that stuff checked out- pain in the butt, but also scary to not know what's going on, so off to the ER I went, and the doc looked up the test results and didn't feel ok about sending me home with the abnormal test results and another round of chest pain-
--had to get off of the Coumadin (blood thinner for those not also in that area of medical mayhem) to do the heart cath, but keep me thinned enough to not risk more clots (so twice daily shots of a different sort of thinner in my stomach for 13 days- initially to keep me off the Coumadin to get ready for the test, then to keep me thinned while getting back ON the Coumadin to go home.....arghhh). The heart test came back excellent- so that was a relief. I can eat fried chicken from the place with the red and white striped buckets now and then
and not feel I'm taking my last bite
But I'm also literally leaking blood from one of the injection sites- guess that old blood thinner stuff in there really works (so does the oxywash stuff that got my pj's and t-shirts cleaned
) They say that happens sometimes.....
OK...on to the neuro stuff....as many know, the tapering up of the Topamax had been a 'bad retro sixties' sort of experience, and not one I was happy with. I ended up in the hospital the day before my neuro appt to talk to him about it, and see if this was really how the quality of life was supposed to be, and what the real goal was- more night seizures and post ictal days of time warps and being zoned out, (but a few less day seizures) or what.... since I got to the hospital during some part of an on-call schedule, I didn't see my neuro for a few days. In the meantime, another neuro added Lyrica (which was on a typed list of "don't give me" meds that was placed in my chart
, with the reason being it hadn't had any benefit for me. Come to find out, on the back of the magazine articles, it also magnifies CNS depression of any
other med with possible CNS depression effects- whether you have them or not). I was a zombie by the second day of taking the meds. I'm on many other meds that can cause CNS depression- I'm used to them, but with the Lyrica, it was a nightmare.
On to "the day"....I was so gorked (think vegetable matter with a slight amount of thought, or slightly higher on the intelligence ladder than a sea monkey, for those who remember them) , I don't remember breakfast being brought in, vaguely remember the resident being in the room (not any of the conversation), and do remember the nurse telling me to sit up and eat something, and take more meds
. Back to la la land. A while later, I could sense someone in the room, and was trying to wake up, since I figured it was a doc, or someone making rounds- I could think clearly enough for that, but not wake up- it was like being locked in my head with no way out
. I was blinking- trying to wake up (blinking is also part of my seizures, that I've been told- I don't remember those- but I remember this). The neuro kept doing painful stimulation, twisting the skin on my upper arm, pinching the area between my thumb and forefinger (normal sites for doing painful stim to see how 'out' someone is), lifting my arms (but catching them- not letting them get hurt), moving my legs (even the one with the knee replacement) and letting them fall outwards on the bed- I always wear sweats or long underwear, so nothing exposed- or inappropriately visable
.....during all of this he's saying "this is no seizure", "this is a pseudoseizure". It wasn't any kind
of seizure- I was drugged out of my skull !!!
I finally got my eyes open long enough and 'awake' enough for him to ask "what is this?", and I answered "I'm so tired". He again said "This is a pseudoseizure. I'm discontinuing the Lyrica" and walked out of the room.
Later, my upper arm and hand became extremely bruised (like eggplant color on my upper arm, and various shades on my left hand), and fingernail impressions were visible. It freaked me out- partly because I couldn't get awake enough to tell him I was "in there", and also because I was being labelled with something without any psych testing, questioning on his part, no observation of any of the actual seizures (I don't call the staff when I feel auras). I wrote a note for my chart that he was no longer my neuro.
The hospital had patient relations, risk management, and the cheif medical officer up in my room within 2 days (after the weekend- this happened on a weekend day-- and my dad seeing it when he came to be there when my heart cath was done.... not good to have dad see bruises on his kid, even if kid is middle aged !!), and were very thorough and kind. The staff on the floor were also supportive. Anybody who saw the bruises were horrified. The Topamax roller coaster wasn't helping since nobody (residents) would do anything to either discontinue it or increase the dose to a regular seizure dose (I'd been decreasing the Tegretol as well, so I was on no full dose of anticonvulsants
for over 2 weeks-just the secondary meds-- adding to the stress of having more seizures and being afraid of what would happen if I was out of it).
I talked to the family practice doc that made rounds on that floor, and she was willing to get me off of the Topa and back on the Teg, just so I could start from square one, and have some actual seizure med on board with a good blood level....I can take a low dose of Teg (600mg/day in 2 doses) and be in therapeutic range, so it didn't take long- and I started getting out of the Topa fog. hey really were nice about my reporting what went on- I know there are always 2 sides and once the Topa wore off, I was able to see how the blood thinners made things worse....more later on that...
I did get a chance to talk to this neuro, which I wanted to do- to let him know that I was aware of the pain
(which was intense on my upper arm), and that it wasn't a seizure, and I couldn't get out of the drugged stupor enough to react - we agreed that the bruises weren't immediately visible, and that leaving marks wasn't the whole idea- painful stim is a valid part of assessing someone who is out of it (believe me, I'e had very light bruises on my breastbone countless times) and that there was no intent to hurt me (and I do believe that- the blood thinners undoubtedly made the painful stim show up much more than it would have otherwise- but still being on the Topa, and being so additionally gorked on the Lyrica (along with my other dozen + meds for other things) I was freaked and scared. I also told him that it would have been nice to have him write "too sedated to assess- will follow up" and then do some testing if he wanted more information instead of immediately assuming
pseudoseizures. (I'd be glad to talk to a shrink/therapist whatever- these seizures have been documented and treated for 21 years, starting in TX- just because they haven't been seen by this guy in one office visit and one gorked hospital visit doesn't mean they're not seizures.)
"slow sharp waves over the right temporal frontal area on several occasions with no input in the patient diary" on the 24 hour EEG and a "diffuse slowing" after a seizure on an EEG mean more than a 'drive by' assessment from this guy . The prolactin test (blood test) is supposed to be done within 10-20 minutes
and 12 hours after an 'event'....mine was done 3 hours
after the 'event' of being horribly overmedicated (not a seizure that it's supposed to show by being elevated) and then left with bruises, a swollen hand that is still not fully usable due to pain (x-rays ok). Even the security guy (who came to take photos) was horrified at the bruising, and he's the dude that breaks up fights !!
I hide as much as possible when I feel an aura. I'm incontinent if they start at night- and if hosptialized am horribly embarrassed, and simply ask for the things I need to take care of cleaning up myself, since I wake up that way, after the seizure and post-ictal sleep are over (if I feel the auras during the day, I use the couple of minutes- usually 2-5, to go to the bathroom, and get into bed to be in a safe place- try to keep bladder empty if I have the time and my jaw isn't feeling 'wierd' yet). I'm generally alone (except when hospitalized, and I can't avoid people being around). The inside of my cheeks and sides of my tongue get chomped on. I've never been told they last more than a couple to few minutes (except once, when it was bad- status can happen even when it's not "grand mal"). Most of the seizures I have now are at home, alone, since I won't risk going too many places (and being vulnerable to wackos who could snatch wallet) if I'd seize there.
I feel like they've declared me a fraud, and put it in my medical record, which even with privacy acts, can be accessed by insurance companies, and jeopardize long term disability and SSD. I want to work--and believe I will at some point, but my health in many areas is not where it needs to be to be employable at this point- SSD approved my application on the first go-round which I hear never happens- over 600 pages of documented information about seizures- not pseudoseizures- was what they had for their decision making...To get back to work, I need to get to a place where I'm not having as many seizures.
When I'm in the hospital, as a patient, it reminds me of what I used to be (can't specify what I used to do- a lot of different types of jobs possible). I didn't always work in hospitals, but did for a little while, and it hurts to remember my 'old life'....having someone put down 'pseudoseizure' like I'm some female hysteric/conversion disorder neurotic after what I've been through and how the seizures have taken away my work life, is like slapping me in the face, and taking my work identity
and crushing it under their feet. I already see someone for the issues around what it's like to be away from work, and having chronic medical issues. Not chronic pseudodiabetes, pseudoarthritis with a new knee, psuedo-pulmonary emboli, pseudofibromyalgia, pseudoseizures, pseudo-autonomic dysfunction, pseudo-anything.
I realize up to 40% of true epileptics have pseudoseizures- and if anyone ever saw me have one, and sat down and explained to me what they saw, and why they believed it wasn't epileptic in nature- vs saying 'pseudoseizure' (which is the outdated term) and walking out of the room, I'd listen up, and want to deal with it- but I'd want it to be someone who knows me
, and what I'm about- not someone who just hasn't seen a seizure happen with me in one office visit and 45 seconds of talking to me in the hospital, so decides I'm a non-epileptic neurotic.
With this neuro, it didn't help that he also didn't know about the side effects I'd had earlier- that I found listed in 4 professional sources, including the govt agency for drug testing, or get back to me about that for 4 days- if the office had said that my message had gotten stuck at the bottom of something, or accidentally put in the wrong place, I would have had more respect for admitting that than giving no explanation. I was calling about a reaction to a new med
...4 days seemed excessive to me. It ended up I only had the reaction for one day, but I felt the need to report it since it was very bizarre, and the Topamax was the only new variable in my life.
Sorry so long- needed to vent, and it's been complicated since getting home, and a really long and emotional couple of weeks.