One Sick Mother

You Fix One Thing, Another Thing breaks...

I used to build and repair computers for a living. And software. And networks, ...peripherals... etc etc . This was way back in the days before plug & play, when there was a lot of figuring and configuring to do in order to get a system running smoothly (or at all). I think this work experience has prepared me well for being sick, as many of the principals learned with machines work well on humans, too -although humans are infinitely more complex and persnickety.

And I learned in the computer world, that if you fix one thing, very often something else breaks or gets worse. This is generally because the original problem was masking a deeper issue, and by fixing it, you uncover the hidden nastiness -which was there all along- but you just didn't 'see' it.

So I have been feeling deja-vu-esque for my old job recently, because I think the exact same thing is happening with me now. Except I can't change a few interrupt channels or swap out a memory card.  I have to  try and refurbish the components in situ. With the power on and the system operating -if only in a limited capacity.

This is waaaaay more complicated than a PC...

I started thyroid medication a little over a week ago. Although my numbers were not technically out of range, #26 thought they were headed in the wrong direction and so he started me on medication. (and researching this, I suspect that he suspects MS. They all do in the beginning...)  I have to say that the thyroid meds helped my fatigue hugely. They also helped the constant feeling of cold that I have had,  which I have written about here before. 

So yes it 'fixed' (well, it definitely helped) two problems that I had had.  The downside: my neuro symptoms got MUCH worse. The fits  came back with a vengeance -OK they had never left, but they got way worse.  I felt much better in-between fits, -and I was sleeping better. But the frequency, intensity and duration of the fits got dramatically worse. Also I started having new symptoms or serious progression of "old" ones. I lost about 80% of the feeling in my right foot for a few days. That was fun. I almost fell down the stairs because I didn't "feel" that I was on the edge.  There was definitely a worsening of what I call "the food factor": i.e. my problem of having fits after I eat a meal. And I gained weight! Who the fuck takes thyroid hormone and gains weight? What is UP with that?

I called #25 about the the neuro stuff, because that was worrying. Also I was thinking that this new information would help him to figure out what is going on. This is a serious detective work, so I figure "thyroid make it worse" is a pretty effin big clue. No? Anyway, #25 threw a blue fit about the thyroid meds. "What were my numbers? Who is this doctor?... What hospital..?" Told me to get off the meds immediately... blah blah blah.

I didn't.  I'm sorry, but I have been feeling so much more like *me* (between fits and numb feet) that I can't bring myself to do it.

I saw #26 in the meantime for the Glucose tolerance Test and he said much the same thing, although I intend to talk to him about it again when I am *not* having a fit, because those guys really interfere with my train of thought and my ability to argue cohesively (that I can argue at all, is a matter of amazement for all concerned -except possibly my mother were she still alive)

So I have kind of figured out an existence which kinda-sorta works for now. I was fine between meals and if I ate very little, so I am still taking the thyroid meds. I am just not eating much during the day, and this helps me to remain (mostly) functional. If I a small meal in the evening, I am usually OK. So I graze on crackers and vitamins until dinner time and then I eat a meal. Very Slimfast. Or something. But it seems to help until the doctors can figure something better out.

I know some people are reading this, shaking their heads and saying "why don't you just stop taking the thyroid meds?" Here's why: I  feel that whatever neuro-symptoms I have been experiencing was masked by low thyroid, which was a problem in itself and causing a LOT of my problems. Now that I have fixed the thyroid issue, the answer is NOT to break it again in order to shore up the neuro issues. The answer is to find and fix the neuro issues for that they are, you know?

 

Like with PCs: Back in the day; I would never have "fixed" a slow hard drive by hobbling the memory to keep pace with it. I would have fixed or replaced the hard drive. I am simply asking for the same level of support from my 'technical team" that I would have provided for my customers.

Am I wrong here?

I don't think I am. (but I never do!)

It's Been A Crazy Few Weeks... (update)

Hmmm. So there have been quite a few doctor's appointments since I last updated: I saw #6 (neurologist) once,  #26 (alternative medicine) twice, #25 (the "good" neurologist) once, the gynecologist, the allergy guy,  and I took my kids to their rheumy appointments.   I blew off my own rheumy for now, but I need to get on that.  I also need to make my annual appointment with the neurosurgeon (always fun ...NOT) and the pulmonologist.

Being sick is a fulltime job.

Most of the doctors appointments took place this week or the week before last. I was totally doctored out by Tuesday afternoon that week. My kids were home from school last week, so I did spend some time just being a Mom. That was nice. I have great kids.

So Update: Yes. Let's see...  The kids' rheumy appointments went well. They rheumy basically backed up what the podiatrist had said about bones growing faster than soft tissue (who knew?) and that was the reason for my son's foot and leg pain. My daughter still has a heart murmur. She is almost 8, and if she was going to outgrow it, she should have done so already, so it is time to take her to the pediatric  cardiologist.  I made the appointment, but I'm not going to worry about that until there is something to worry about.

So what else?  I had a fight with the gynecologist She want to refer me to pain management and I basically told her to eff off. I don't want to take drugs for a problem which can be removed in a 10 minute procedure. She told me to find a new gynecologist.  So I decided to, and two days later the pain subsided. For now. (I'm not willing to admit yet that she might have been right!)

I must have been feisty last week. I had words with #6 about reporting procedures to the FDA (see FDA part V on that). She had the results of my latest EEG. All perfectly normal. I was somewhat taken aback by that, because even though I had not had any "events", I had had several dizzy episodes, and indeed I had had a brief glimpse of the tracings from one of these and they had not looked normal to me. But what do I know? I was not Board certified in Neurology the last time I checked, so OK. Whatever.  She is the doctor. On the way out of the office I picked up a copy of report to keep for my records (and to give to #25). I read it when I got home. I called back the office immediately:
"Who's EEG report is this that I just picked up?" I asked
"Why?" said the confused Blonde, "whose name is on it?"
"Oh it's my name, but this is not my report. This report said that there were no push button events when I know I pushed the button at least five time. Also, this report states that I was asleep by 11:31, when I know I was awake at 11:53, because I was pushing the button at exactly that time.  So this is either someone else's report with my name on it, or somebody has screwed up mightily."
"Am I SURROUNDED by fookin incompetence?" (OK I said that past sentence in my head)

They said they would get back to me with a revised report. That was on Valentine's day. I am still waiting. I have written a very nasty letter., it is going out tomorrow if the report isn't in my hand after the mailman comes. My insurance company does not need to pay for this kind of incompetent crap.

The next day I had another neuro appointment. This time it was with #25. I had planned to discuss the EEG results with him, but as it was not my report, there was really no point... <sigh>. I had a little fit in the office, which he witnessed and he told me he wants me to see yet another epileptologist. I don't know if I will bother, but we will see. Then he dropped a bombshell: My neuro exam, which #6 had always insisted was normal as the day is long, is NOT normal. My reflexes are different above the level of the syrinx than below. I have diminished reflexes below the level, which would be consistent with spinal cord damage <UGH>. So after 24 different doctors -including the purported world experts in the field- told me the syringomyelia was "totally asymoptomatic" it isn't. I had fought for months to get a proper diagnosis on this. I had finally -almost exactly a year ago- accepted that it was a  "benign incidental finding on an MRI" and now I find out that it is neither benign nor incidental.  Even if the syrinx is shrinking, my symptoms are progressing.

Fuck. 

(That's really all I can say to that.  What else is there? And what would be the point?)

I also saw #26 and the allergy guy (we can call him #27, I guess). I still have bumps on my arm from the allergy testing. I think I will discontinue that. I have a propensity towards hypertrophic scaring (thank you, Ehlers-Danlos Syndrome), and I really don't want that to have two armloads of bumps for the rest of my life. <sigh>

I started taking thyroid medication, but that is a post in itself.

And today I had another Glucose Tolerance Test, which was not uneventful. Another post.

Sorry. that my update has not left you up-to-date. I hate playing catch-up, but I really was busy.  And sick.

I Could Have Told the FDA A year Ago, Part V

I saw #6 recently. I asked her about some new symptoms, most notably a “hug” sensation which I have not had before but I believe sometimes happens in people with spinal cord damage. She was evasive as to whether the problem could come from the syrinx. She said something like ”maybe, probably not” Helpful, what?

I will get back to that visit another time. Or maybe I won't. It irritates me even to think of #6.

I also asked about reporting requirements to the FDA or to the drug companies. I have had some really bad reactions to medications, some of which were (officially) unheard of. I always believed that here in the USA, where prescription medications are so heavily regulated (purportedly) that my horrible adverse reactions would have been reported to the FDA. –Or at least to the drug companies.

They weren’t. Doctors are not required to report adverse reactions –even potentially life threatening ones like seizures or suicidality (both of which I personally have had with different drugs). They are encouraged to report them, but it is entirely voluntary. According to a doctor friend of mine, the prescribing doctor is supposed to report them, but it is “a pain in the ass to do”. So most don’t bother unless it is something really horrible.

I guess having seizures or feeling suicidal is apparently not quite horrible enough.  Mad, eh?

This explains something I found very puzzling when I was researching adverse reactions: One of the drugs on the FDA’s list of 11 is Felbatol. This drug was released in August 1993 to much fanfare –the first new epilepsy drug in several years. On August 1, 1994, -after just under a year on the market- the FDA issued a letter to 240,000 physicians, recommending "immediate withdrawal" of patients from Felbatrol because it was linked to ten (10) cases of aplastic anemia and (I think) 3 deaths. There were also some reported cases of liver damage and some deaths from that which were confirmed after August 1994.

Ten reported incidents in a year. TEN. And Felbatrol was withdrawn. It was subsequently re-instated with huge warnings and restrictions, and is still available today, but used by very few patients –for obvious reasons.

I guess doctors considered aplastic anemia serious enough to report, so the FDA caught the problem relatively early. The system worked. Not soon enough for the three who died, but it worked.

That time.

So what happened with this suicide thing? Why did such a serious effect and obvious signal in the statistics take years and years to be uncovered?  I don't know why. I wish I did. I do know that the FDA first started to look at this stuff a few years ago. In March 2005, it requested data from the studies and clinical trials conducted by the AED manufacturers. The FDA received data from 199 studies, covering 27,863 patients on 11 different drugs (as well as over 16,000 patients on placebos). It took the FDA three (3) years to compile and analyse this data, and the numbers they uncovered look like this:

27,863 people used the drugs covered in the studies

120 (approx) of those people felt the "suicide"  side effect (0.43%)

4 people actually took their own lives. (i.e. 1 out of every thirty who felt the side effect)

In the control group the number of people who experienced suicidal thoughts or feelings was 0.22% with no (0) actual suicides.

I don't really want to single GlaxoSmithKline (GSK) or Lamictal out unfairly here, but I am going to. Do  bear in mind that Lamictal is only one of 11 drugs in the study and is by no means the most widely used one. Lamictal interests me particularly, however, because it was the drug which caused my sudden suicidal impulse. Also, GSK have great numbers available on their website, which makes it easy for me to kinda-sorta compare against the FDA numbers. The Lamictal usage figures are global, not just for the US but still eye-opening.  Also, Lamictal is still  under patent, so it is unlikely that it is used widely in the developing world.  It is safe to assume that these number mostly apply to developed populations, and therefore -in theory at least, should have been more closely monitored. 

If we extrapolate out the FDA's figures and apply them to Lamictal, here is what I came up with:

C 5,000,000 (5 million) people have used the drug

C 21,500 of those would have felt the side effect (0.43%)

716 Actual suicides ( that is 1 in 30 rounded down).

Seven Hundred and sixteen families.  And Lamictal is only one of eleven on the list. The others are mostly very well recognized and widely used –including Valporate, which is marketed as Depakote, Depakene and several other brand names and has been available since 1978. Thirty years.

Scary?         ...Nay.

Terrifying.

Now, here is another fact that I find utterly fascinating: While the FDA fumbled around for three years compiling and analyzing data which the drug companies had doubtless already had for YEARS, the drug companies were merrily running their own studies regarding their AEDs and depression. And the drug companies were publishing those results, which showed their drugs in a positive light in this regard, and marketing these results to doctors  (I am only guessing that there may have been other study results not so widely publicized).

In May of 2006, GlaxoSmithKlein presented a nice detailed study at the 54^th Annual Clinical Meeting of the American College of Obstetricians and Gynecologosts (ACOG), specifically touting the anti-depressant effect of Lamictal for women with Epilepsy (why they did not present this study to neurologists is a question only GSK can answer. Or maybe they did and the gynecologists just talked about it more). Now for a show of hands: Who here honestly believes that in all their studying of Lamictal and major depressive disorder, GlaxoSmithKlein did NOT see this increased risk of suicidality with their drug? You can put your hand down, Jean-Pierre Garnier. You too, Andrew Witty. No-one expected you guys not to raise them...

So in the last thirty years, thousands of people have killed or damaged themselves because of anti-epileptic drugs. Who know how many more had experiences similar to mine (and worse)?  I can only guess at how many people or their families actually told their doctors that the drug was responsible, but they were blamed, ignored, disbelieved, or the information was simply not reported because of the "pain in the ass" factor.

The system FAILED that time. It failed utterly and continuously for many, many years. And for many families, it failed hopelessly and permanently.  Remember that a suicide invalidates life insurance coverage. How many families were destroyed by this failure? And it was not just the FDA's failure. I am sure many agencies around the world failed similarly.

So here is root of the problem that I can tell: There is an basically an honor system in place between the FDA and the medical and pharmacological industries for reporting adverse drug reactions. This system seems to work for very serious and obvious medical side effects: Vioxx and the heart thing, Felbatrol and aplastic anemia. However, as always, when the lines between medical and mental side effects become even slightly blurred, the blame shifts to the patient and the system breaks horribly.

Suicide or any “mental health” concern which may be flagged in a drug company study is is very easy to write off to other causes –especially if the risk is relatively low. Physicians have a lot of their plate already. A doctor is unlikely to take on a "pain in the ass” job like taking a up a patient’s cause with the FDA ot the drug company, when it is easier to just roll his eyes and write a different script. Sorry but it is.

So the reporting system is flawed on at least two counts.

Patients do have the option (I'm told) of reporting adverse reactions either to the FDA or to the drug company, but most are not aware they can do this, or how to go about it. And I don’t know how easy it is for them to do so. I will have to look into this, because to my mind, patients reporting side effects directly to the FDA or other regulating body (and not to the drug companies) could be by far the most reliable way of collecting mass data on drug side effects and interactions. Think about it: Most patients don’t have obligations to the drug companies. They are not beholden to shareholders or the stock market. They will report issues honestly and without an agenda. Yes some people may be mistaken, but the numbers will out. And there may be a few with grudges who will attempt to abuse the system, but again, that should be relatively easy to weed out in the numbers.

  Nowadays many people have Internet access so a mass collection system is much cheaper and easier to implement now than it would have been 30 or even 14 years ago.

Here is OSM’s recommendation for avoiding a repeat of this AED disaster:

The FDA should develop an on-line database system which will enable patients to directly input adverse drug interactions to the FDA -NOT to the drug companies- but straight to our Uncle Sam.

Prescription labeling rules should changed include the reporting system access information with all prescriptions “please report any adverse reaction not noted here to <special FDA website>". The FDA may want to go so far as to include an unique ID code with each drug or generic to be included on the actual label, which will enable them to pinpoint reported problems back to specific generics or the additives therein- maybe even to specific batch numbers. (am I smart or what?)

I am not sure how to use my fancy system for vaccines, IVs, hospital-or institution-administered medications and drug company samples. But I am confident that the FDA can figure that one out…

Also there needs to be a method by which people without Internet access can report these problems –the elderly and the disadvantaged, for example. For these people, a form can be included with the pharmacy instructions. They can fill out the form, and hand it to their pharmacist to be input into the FDA system.

Maybe my system isn't perfect. Maybe it is expensive or open to abuse. But what expense can one put on a human life?

Indeed, on 716 of them?

The FDA and regulating agencies worldwide need to take the lessons learned from this AED fiasco and take strong and immediate action to prevent anything like this ever happening again.

Take it from a Sick Mother who knows firsthand exactly how horrible is this kind of side effect.

I Could Have Told The FDA A Year Ago, Part IV

So I -in perfectly sound mind and body- left the in-pain, bleeding and terrified-of-losing-her-baby pregnant woman in the ER waiting room. I went in to get treated for a condition I knew I didn’t have. Himself had gone outside to find a non-nauseated patient zone in which to eat his sandwich, so I was left to savor the experience of losing my freedom alone.

I walked through the steel doors that separated the ER waiting room from the ER proper and my legal status changed. I was no longer a free person with rights. I was now a Mental Patient. I don’t think that’s the legal or technical term, but you guys know what I mean.

I was herded into a curtained-off bed and two female nurses stayed with me, while another one or two people took up guard outside. One nurse made me empty my pockets completely and put everything in my purse. Then they took my purse and all my clothes, leaving me in a hospital gown, bereft, a pair of socks my only possession.  OK I had underwear too. I just I couldn't resist using that line.

Himself arrived to find me sitting on the bed, staring at the empty space where my watch usually lives. (who will buy this wonderful feeling?). Afraid not to eat in case I seized, I choked down half a sandwich.

I was given a very cursory neuro exam. The nurse came with me to the bathroom. Nobody willingly met my eyes.

Eventually, it was time to transfer me to another building. The nurse, a driver and two uniformed, armed security guards came to get me. The guards were the smallest-but-built men I have ever seen. In my mind, I called them mini-thugs. The mini-thugs stood guard outside and the nurse stayed with me while I dressed. I was not allowed to carry my own purse.

On the way out, I spotted the pregnant woman laying on a gurney in a hallway just inside the metal doors. I stopped to wish her well, and commiserate with her about the horrible state of affairs with the wait-time, while the mini-thugs took up defensive positions behind me. I could see the horrified pregnant lady looking at them under my arm and then looking at me in a “what has she done?” kind of way.  I declined to explain.

Luckily for me, the nurse was nice. I was required to travel to the psych hospital building in a hospital mini-van with the nurse and mini-thugs all in attendance. However, Himself was not allowed to travel with us. The nurse made the driver wait for Himself while he got his car, and she allowed me to use my phone to direct him to us. I'm sure she didn't have to do that, and I think she probably thought it was better to keep me calm than risk some kind of explosion or meltdown. (Sure I was a Mental Patient, who knew of what I could be capable? (sarcasm. I am very capable of sarcasm. <gasp>)  But still, she was nice, and I am grateful to her for that. She can't have an easy job.

The unit was a squat brick building in the middle of a deserted parking lot. It was surrounded by high fences and the security gate was manned. We entered the building through reinforced double doors. You know the kind where the second set only opens if the first set is locked? Those.

I was seen pretty quickly by the intake person who was a skinny blond social worker. She was the singular most color-coordinated person I have ever seen in my life. She was wearing a very nice outfit of muted pink, pale gray and magnolia. Not ivory. Not ecru. Magnolia. I wondered how long it took her to get ready in the mornings.

Miss Color-coordinated surveyed us for a few seconds before she spoke. I could see her taking in my calm demeanor, high-heeled boots and expensive, sky blue trenchcoat (I got it on sale for $40). I could practically hear her thinking “what has brought her to this?”

"Why are you here?” she asked. it was a good question. I had been thinking the same thing.  Actually I was trying not to think of it. Because if I thought about it too much, I could probably actually go crazy right then and there and prove the neurologist right.

She looked from my tense, silent husband to myself. I almost choked on the answer:

"My neurologist sent me. She thinks I am suicidal.”

"Are you?"

"No. but I was on Wednesday..." And I explained about the medication.

"But this is Friday. Why is she sending you here today?" Another good question. I explained that I had had a seizure in her office, which was allegedly not a "real" seizure.  She sighed heavily.

"Do you want to be here?"

"No"

"Do you think you need to be here?"

"No"

"Do you think you need psychiatric help?

"No more than anyone else".

I wasn’t making her job any easier, but I failed to see why should I agree to be committed for her convenience. She then went on to ask a lot of questions about whether I heard voices or saw things which were not there (“No”) and if I harbored feelings of resentment against my children (“No”). I did have a hard time concentrating on her questions because I found her attire so fascinating. Her shoes picked up the exact pink hue from her tweedy jacket. So she’s asking me if I ever had hallucinations, and I am wondering how long it had taken her to find those shoes, and if she only wears them with that outfit, or if she has multiple outfits in those colors.  I bet she has no kids I remember thinking. No-one with kids could maintain a wardrobe that looks so perfect this late on a Friday afternoon.

I was sent back to the waiting room, and then very quickly called for processing. I was stripped again, and put in a hospital robe to be processed for the physical evaluation. One nurse was examining me, and the other was about to make off with my clothes when Miss Color-Coordinated returned. “Stop that. We are interrupting the intake process.” She paused and looked at me. “…for now, anyway” I was allowed to dress before I met the Director of the center.

The director was a somewhat portly man of Middle Eastern or North African extraction. He was quick of mind and very still of body. He has a very sympathetic way about him, much more grandfatherly than the aggressive Indian chappie –who was undoubtedly part of the same administration- that I had seen back in February. “Are you depressed, you can tell me?” he asked outright in his lyrical, grandfatherly voice. I tried to explain that I had been unwell, and was not happy about that, but any sadness had come from the inability to do stuff, not the other way around. I don't know how good a job I made of the explanation.

After about 30 minutes in which we had a full and frank discussion and I asked him outright if he thought my seizures were psychosomatic (“That is not my field, and so I could not say”) the director agreed with me that the Lamictal had caused the episode on the previous Wednesday, I was not a danger to myself or anyone else (except perhaps 6½, should she have happened past at any time, but I neglected to mention that part) and I was free to leave.

Funny. The ride back home was very quiet, too.

That is the end of my little tale of woe. But it is not the end my writing on this subject. I started with some statistics and I will end with some in part 5. And some questions. Because I am still pretty outraged by what happened to me. And to think, I was one of the lucky ones! I recognized what was happening to me, I took action and I lived.  Yes, I went through an ordeal. But I lived.

How many people have died?

That question has haunted me all month.

I Could Have Told The FDA A Year Ago, Part III

There was a guy grew up in our neighborhood called One-Armed John. I may be stating the obvious here (and my ex boyfriend would be proud), but he only had one arm. He hadn’t always been One-Armed- John, in case you are wondering. Originally, he was John. Some form of childhood cancer had got him and they had had to amputate his arm at the shoulder. That’s the story I heard anyway, and I have no reason to disbelieve it. As a child, I had rather a nasty if understandable fear of developing cancer.

One-Armed-John’s Ma used to turn the sleeves of his shirts inside out, and pin the sleeves of his jackets to his side, so they wouldn’t flap around when he walked. In fact the only clothes One-Armed-John had, which fit him well were the colorful one-armed sweaters that another lady in the neighborhood used to knit for him (you think I’m making this up. I swear I’m not that imaginative). One-Armed John moved out of the area when I was still a kidling and he was a teenager. There was about ten or twelve years between us.

One night, when I was about seventeen, I was walking the family dog and I saw a one-armed figure lumbering towards me through the November smog. “Is that One-Armed John?" I wondered to myself. However, I hadn’t actually seen One-Armed-John in about ten years and I was afraid to say anything in case it happened to be another one-armed man who might then accuse me of discrimination -like I wasn’t sensitive and thought all one-armed men were named John. Or something, So I kept walking.

Well, the one-armed stranger nodded to the dog and said “Hello, Lady” (which was her name) and I knew it was in fact One-Armed-John. Later he explained to me that he had recognized the dog and had reckoned I was one of the four sisters who owned her. But he didn’t want to guess which one in case he guessed wrong and was accused of discrimination. Or something. So we got that all sorted out and then spent a happy 30 seconds catching up on the previous ten years before we went on our merry way.

One-Armed John didn’t stay back in town very long, but he stayed around long enough for me to notice two marked characteristics he possessed:

1. He was a talkative drunk.
2. Despite his handicap (or maybe because of it), One-Armed John was the single best cornerer I have ever met in my life. I mean really, his ability to corner someone and rant at them -in the open street! -was quite astonishing. I remember having the misfortune to run into him on the street one evening, and he was drunk and talkative. The man cornered me up against a lamppost for over half an hour talking drunken shite at me, and pointing with his one arm to emphasize his drunken shite. I remember marveling at the wonder of it at the time “here I am, cornered against a lamppost by a one-armed man”. It was after that incident that I became very good at running in heels. One-Armed-John -unbalanced- and usually drunk, wasn’t a good runner. 

Sorry. I got diverted for a minute…

So there I was, in the doctor’s office. “laying down” to let me fit pass, with the small-but-works-out-six-times-a-week Delilah babysitting me –I supposed in case I bit me tongue or something. After a little while I felt better but was discouraged from leaving. "Wait a bit longer". “You shouldn’t go out alone –even walking." "Wait a few more minutes.” And “Isn’t there anyone who can pick you up? “ etc etc. I think I tried calling a few people, but most of my friends live a ways away or they work.

Well after a couple of hours, 6½ came in, she was stuttering and acting very nervous. Y-your husband is here. (he appeared from behind the doorframe) He is going to take you to the emergency room.” It turns out she was referring to the psych emergency room. 6½ was trying to have me committed.

For having a seizure. 

"It's not Epilepsy" she said gravely, in a tone of voice one generally reserves for the terminal, shaking her head and belying everything she had ever said previously.

Now, I don’t know if many of you have been in the situation where you are surrounded by four or five people who want to commit you to a loony bin, one of which is supposed to be the person who has pledged to love and cherish you for the rest of your life in sickness and in health and all that…

Shite. It was all shite. AND it’s not a good feeling.

Moreover, it is not possible for one to express just how bad a feeling it is, because at that point –with a bunch of people trying to convince themselves that you are a loony, any normal reaction you might have could be termed “argumentative” or “combative” and basically used against you. I tried to get some sense out of 6½ as to what possible logic she could apply to make this fit. But apparently you don’t need logic if you are a half a doctor. Or reasoned discourse, apparently. She effectively refused to speak to me about the matter. Again, if I pushed the issue, I would have been accused of aggression.

I was cornered. I couldn’t have been more cornered if One-Armed John and his pet octopus had me trapped in a confessional. So I did the only thing I could do under the circumstances. I went quietly –noting strong objections and hoped beyond hope that the people in the loony bin knew their stuff.

It was a quiet drive to the ER. (she said, shaking her head at the understatement). We had to wait in the regular waiting room with all the other sane people who had actual medical needs. The place was a zoo. It was pure mental, littered with bleeding children, dazed Arabs and vomiting Indians. There was a pregnant woman to my right who was in pain, bleeding and in a panic, obviously afraid for her baby and trying to see a doctor ASAP. She kept being told to wait. And wait. And wait. I felt really bad for her.

When I was in sixth grade, we performed the the musical “Oliver” as our school play. It was a total mess, but I learned all the songs. For some perverse reason, the song “Who will buy...?" came along and embedded itself in my head. Thankfully, It chose to do this in the voices of the original cast, and not those of my 6th grade classmates (and for that mercy, I am forever grateful). So I’m sitting there, in the mental sane-person’s emergency room, staring at this single violent blue floor tile amid a series of gray ones, and my thoughts are going something like this:

Who will buy this wonderful morning?

It’s Friday afternoon. I hope they are not knocking off early...

Such a sky you never did see

What if there is no doctor there to evaluate me properly?

Who will tie it up with a ribbon

If there is no doctor, will they just admit me as a "safety precaution”?

And put it in a box for me?

Will I just be left there until Monday morning?

So I can see it at my leisure

And probably put on some kind of psych drugs by an NP

When everything goes wrong

…because let’s face it. It’s a psychiatric hospital

And I can keep it as a treasure

Drugs have to be mandatory

To last my whole life long

Because if you didn’t need drugs, you wouldn’t be there. Right?

Who will buy this wonderful feeling?

My friend who was in the loony bin told awful stories

I’m so high I swear I could fly

About being there over a holiday

Me oh my, I don’t want to lose it

How there were no doctors available

So what am I to do

And these poor overmedicated people

To keep this sky so blue

Drooling and quite literally stewing in their own juices

there must be someone who will buy

But that happened in a public hospital

There’ll never be a day so sunny

...didn’t it?

It could not happen twice

At least I think it was a public hospital

Where is the man with all the money?

Speaking of money….

It’s cheap at half the price

I wonder if insurance will cover the loony bin?

Who will buy this wonderful feeling?

Because I sure as hell am not paying for this

I’m so high I swear I could fly

No matter how many drugs they give me.

Me oh my, I don’t want to lose it

Speaking of drugs, will they believe me…

There must be someone who

when I tell that that I have bad drug reactions?

Can keep this sky so blue

And what if that happens and there is no doctor?

There must be someone who…

My name was called before the pregnant lady's. I felt really, really bad.

That concludes this installment, ladies and gentlemen. More another time.

Pain is Honest

I will get back to the FDA thing. I promise, but in the meantime, I just wanted to get this off my chest.

There are few things that are truly honest in this world: Dogs, Aspies and pain are three that immediately come to (my) mind. Dogs and Aspies cannot lie. They sometimes try, but they suck at it. You can easily see the lie in their faces or in the evidence left in plain sight.

Cats are pretty accomplished liars. They will look at you bald-faced and yowl like they are starved, when you know for a fact that they were fed by someone else not quite five minutes ago. Sometimes they will even try that trick on me when I was the one who fed them five minutes ago. It's like the little buggers KNOW I have problems with short-term memory and they are trying to pull one over on me so they can have a second breakfast. They'll need to get up a bit earlier in the morning for now.

Pain can kind of lie. It can get locations mixed up, so you get referred pain and ghost pain. But you don't get pain for no reason. Pain is there to tell you something is wrong and in that regard it is honest.  Yes, sometimes it may send the signals to the wrong place, but that doesn't happen too often.

I went back to see #4 today. She is my ob/gyn.  My *old* ob/gyn that is. My more recent ob/gyn was #5, but he misdiagnosed and mistreated an ovarian cyst a few years ago, so I ditched him right after he finally did the surgery to remove the offending beastie (after a YEAR of treatment for something I didn't have) and I returned to #4.

I haven't seen her in years. The last time was before my second grader was born, so it took some time to get up to speed. I explained that the main reason for my visit is that I think the cyst is back.  The pain is certainly back -in force, and it feels very horribly familiar. Her reaction was a very typical "doctor" reaction:

"It is very rare for that kind of cyst to re-occur. very, very rare." I was about to use my "rare does not equal mythical..." response, but then she prodded the sore bit and I winced and shut up. She continued:

"...OK. Let's concentrate on the other side first"  (no problems there)

"...now let's have a look at this sid... (OSM suddenly needs to be peeled off the ceiling) ... Oh. ...yes. I think you do have a cyst there..."

I don't know if you ever tried, but it is very hard to roll your eyes when they are all squinched shut in pain... 

So now I have to jump through about 57 hoops to get this thing fixed. I suppose I should be grateful that it didn't take a year to diagnose this time.  And it is a relatively simple fix. it is mostly the pre-op and clearance stuff that will be a pain to get organized.

So the pain didn't lie in the end. Pain is honest.  I respect that.

I Could Have Told The FDA A Year Ago, Part II

So where was I? Yes. The Monday after the Superbowl…

I was in the hospital, having been there for over a week. I had just finished a four-day Video EEG test in which I had several seizures. The Powers That Be at the hospital reviewed these results and determined that I did not have Epilepsy. So they did what most hospitals do: They hedged. They ordered a psych eval. AND put me on an anti-epileptic medication. The one they chose also happens to be used often as a mood stabilizer for bi-polar disorder -which I officially don’t have and that should have been known at the time. So it wasn’t an even hedge. It was rather heavily weighted on the psych side.

I was not allowed leave until I saw the psychiatrist. We waited hours (during which time the school lost my then 6yo daughter). The psychiatrist walked in the door -having made up his mind that I was nuts long before he ever clapped eyes on me. The entire session consisted on him trying to persuade me that I was crazy, and me trying to ask rational questions like why certain foods and eating patterns seemed to trigger my fits. I’m sure “probable eating disorder” is written in his notes somewhere. He poo-pooed my arguements that there are many reasons for seizures and only one of these had been ruled out. He seemed to think that the diagnosis of fits is a binary choice between “Epilepsy” and “Nuts” No other possibilities. And *he* was the one who (purportedly) went to medical school?.  Puleese. This would never have happened had I been a man.

The hospital eventually released me and told me to follow up with my neurologist and a shrink. I followed up with the neurologist. I had actually already seen a shrink (#7), so I didn’t see the need to waste either of our time again.

You have not heard of this neuro before. She is not actually in the numbering system. Let’s number her 6½ because she is in the same practice as #6. I had changed from #6 to 6½ when the latter joined the practice a few moinths prior. I liked #6. She was thorough and wore good shoes, but I found her rather cold and incurious. She was also very busy. So I had switched to 6½ for convenience and in the hope that fresh eyes might bring new insight. Now in fairness to 6½: She had really tried to help me in the past. She had witnessed what went on with me during one of those bouts where I get weak on one side and she had been really concerned. (she sent me to the ER that time because I had all the symptoms of a stroke –I got the all-clear on that).

Well I sat with 6½ a few days after the VEEG debacle and she said “Well #15 (only she didn’t call him that) said you have Epilepsy. I think you have Epilepsy” You have all the symptoms, So we are going to treat it as Epilepsy”. OK Fine. She left me on the anti-epileptic drug we had started in the hospital with a schedule for slowly raising the dosage to therapeutic levels. I was to call if I got a rash or any adverse reaction.

All was well for a few weeks. I thought the drug made me a little depressed at first, but my body seemed to adjust and it passed. The literature said that it can cause depression and suicide in teenagers, but I am definitely not a teenager. I shrugged it off as paranoia on my part.

Well, one Wednesday –March 21^st to be exact, I had just raised the dosage of Lamictal (for that is the drug in question) that day or the previous one (can’t remember exactly which). I was pottering around the house, a little stressed because my disability cheque had not showed up, but all the bills had (funny how it always works that way and not the other way around). I was reading through some paperwork and something on a bill –I can’t remember even what- made me upset. Not just upset. Mental. I had this sudden urge to just end it all. Just go into the kitchen, take one of the sharp knives out of the block, and raise it up to my throat... and BAM! One quick hard stroke and I wouldn’t have to worry about bills anymore. Or anything.

Now let me just take a minute to assure those of you who don’t know me too well, that this was not part of my regular Wednesday morning routine. Have breakfast, Pay bills, battle strong sucidal ideation, eat lunch may be the routine for some people –and that is their right-, but it cetainly is not how I usually spent my days. In fact, before that day, I had never experienced anything like that. And I never want to experience it again. It was completely horrible

And it scared the shit out of me.

Luckily it passed pretty quickly and somewhere in my logical mind, I had retained the knowledge that this urge had not been real. That it had not come from my real feelings. However, it had been very sudden and incredibly strong. It had taken me completely by surprise. I didn’t know that I would be able to retain that small vioce of reason if another, stronger urge would strike. And I knew deep down that the medication was the cause. It had to be. I had just raised the dosage and nothing else had changed.

I called the doctor’s office. The office manager –we’ll call her Delilah, answered the phone. Here’s how part of the conversation went:

"Dr 6½ is not here. You need to call tomorrow.”

"I need to come off this medication today. It is having a very bad effect on me”

"You can’t stop the medication without the doctor’s permission.”

"Then get her on the phone”

"I can’t. She’s not here. Why can’t you wait until tomorrow? What’s wrong?”

"It is making me depressed.”

"Well just one more day. You are scheduled to see her on Friday anyway”

"I can’t wait until Friday …You don’t understand. It’s having a very bad effect on me. I need to stop this medication TODAY. Just now I wanted to slit my throat. Just tell the doctor that as of today, I have stopped taking it.”

Then I had to battle a stream of the horrified “Oh My GOD!"s And the "Are you all right?”s and “is anybody with you?”s …All that crap. I assured her that I wasn’t about to do anything drastic, but I was stopping the medication whether the she or the doctor liked it or not.

And I hung up and went back to my pottering (I am a champion potterer. Were there a potterer Nobel prize, I would be nominated for sure).

About five minutes later 6½ called my house. I explained that this medication was quite literally making me crazy and I was stopping it. Again with the "Are you alone?"s etc. She tried to persuade me to go to the ER but there was no way I was doing that. My kids were due home and just knowing that I was going to stop that med, I was feeling a bit better. I knew I would be able to fight urges at the level I had felt them that day. My big fear had been, as the medication built in my system, those fights would become unwinnable for me, and I might actually hurt and kill myself without wanting to. 

Mad that a drug can do that to you, eh?

The next day (Thursday) was nice. I had an appointment with a new neurosurgeon in the city in the morning and I spent the day in the city with my good friend “N-not-the-one-I-grew-up-with” as I affectionately, if laboriously call her. We hung out in the city, shopped and had a nice lunch. It was really nice. I was fine. No sudden urges to throw myself of fthe Empire State building or under a subway train.

So Friday morning, I had my scheduled appointment with 6½. She was a totally different person than the 6½ I had known perviously. She was cold, hostile, judgmental and bitchy. I told her I had seen another neurosurgeon and she made the comment “…and he won’t operate on you either” As if that was my entire goal in life! I had felt a seizure coming on as I had been in the waiting room. It progressed during the consult with 6½ . It became difficult for me to speak either to explain myself or to call her on her snippy attitude. The fit got to the tonic and shaky phase while I was in the examining room. Did she take the opportunity to examine me? No. She asked me how I had gotten there (“I drove but I’ll walk home”) then she practically stepped over me and left the room saying in a nasty voice “You can’t drive if you have seizures”.

I unfolded my cane (the right-side weakness was back in force. It usually is after a fit) and hobbled to reception. I knew another fit was coming, and I wanted to be off the premises when it happened. It just so happened that The Blond was on reception so no-one was getting out of there fast. The fit came, and I started to fall. A guy with a back injury caught me. I weighed less then than I do now, but I’m sure that didn’t help his back any. I was half-carried into one of the back rooms to lay down and recover…

There is quite a lot more to the story, but I am tired again. I am going to take a break here and tell you more tomorrow.

I Could Have Told The FDA A Year Ago

And I'm not the only one. I’m sure many other people could have told them too. Or their families could have if those people happened to die virtually out of the blue by their own hand.

“Oh, Sick Mother, whatever are you talking about now?” I hear you ask.

I’m talking about the “new” report from the FDA and the “new” warning from that same agency that eleven (11) anti-epileptic drugs increase the risk of suicide by 100%. 

I could have told them that a year ago.

“By 100 %!” I hear you say. “That is huge! How could they they have missed that?” Good question. However, the original percentage was small, so a large increase in a small percentage will just give you a slightly less small percentage. An increase of 100% in that particular number means it still effects only 0.43% of the population. However the actual side effect; suicide -for God's sake! is pretty frickin huge and devastating, so asking how the FDA could have missed it for so long is a very valid question. Especially as so many drugs are involved and several of them have been around for many years.

"So what does 0.43% actually boil down to in terms of real people?" I hear you ask. Well, my friend, it is funny that you should ask that, because I happen to have done a little research, crunched a few numbers, and I have some statistics right here. These figures are very rough, but they provide food for a lot of thought (or should that be "a lot of food for thought"?  Oh well...)

The current US population 303,350,107 (give or take). The incidence and prevalence of Epilepsy in the US is approximately 50/100,000. It is higher in less developed countries. -We are only looking at Epilepsy for now, although many of these drugs are prescribed for other conditions in this country both on- and off-label. However, the FDA report stated that the population apparently at greatest risk from this particular problem were those prescribed these drugs for Epilepsy. Let's keep it small for now (I'm not very good with numbers) 

So we have approximately 151,675 people with Epilepsy in the US. If we take 0.43% of these, we have roughly 3,527 people at risk presently. That’s not such a small number. It is more than died in the World Trade Center. If we take into account that many of these drugs have been around for a decade or longer… Hmmm. So how many people might have been effected over the years? Also, when you think that most epileptics are prescribed many drugs and drug combinations before the correct one is found, most of these 3,527 people were exposed to risk several times. I don’t know the exact number, but in my mind it is far too high to be acceptable

Now let’s look at the risk: it’s pretty nasty. If a person actually managed to kill themselves because of an undocumented drug side effect, the person is blamed –not the drug. The family left behind suffers horribly. Life insurance is null and void, so if the Epileptic happened to be the primary earner, the rest of the family will be screwed. And very often there is a shadow cast upon the remaining family as the community speculates if they somehow contributed to the suicide of their loved one. That's assuming they manage to somehow keep their house, of course.

“But come ON!!”. I hear you say. “If a person tops themself the tendency was obviously there already. The drug must have just pushed them over the edge. Maybe it just hastened the inevitable, but you can't blame the drug...”.

I would have thought that too, you know. Had I not experienced this side-effect for myself, I would not have thought it possible that a normally rational and non-depressed person would suddenly become suicidal as a drug side-effect. But they can. I felt it firsthand. It was horrible –as was the aftermath- and I will tell you all about it.

…Tomorrow.

I am tired now so I will continue this tomorrow. But I will tell you this much: It all started last year on the Monday after the Superbowl...

(ain't I a stinker?)

OK. I just edited this to add some practical information for yuou guys,m because I know a lot of my on-line friends have taken these drugs -or theitr children have. (apologies for the bad HTML. I have no patience for this stuff). Here is a list of the drugs involved:

carbamazepine (marketed as Carbatrol, Equetro, Tegretol, Tegretol XR)

felbamate (marketed as Felbatol)

gabapentin (marketed as Neurontin)

lamotrigine (marketed as Lamictal)

levetiracetam (marketed as Keppra)

oxcarbazepine (marketed as Trileptal)

pregabalin (marketed as Lyrica) dec 30^th 2004

tiagabine (marketed as Gabitril)

topiramate (marketed as Topamax)

valproate (marketed as Depakote, Depakote ER, Depakene, Depacon)

zonisamide (marketed as Zonegran)

Here is a link to the report on WebMD: http://www.webmd.com/epilepsy/news/20080131/suicide-risk-from-11-epilepsy-drugs

One Shorn Mother

Tom was my hairdresser. I think he was the only straight male hairdresser with a sense of humor in the entire tri-state area.  I found him when I first moved to this area eight years ago and I never looked back. I loved Tom.  -Totally as a hairdresser and a person - you understand.

Tom went and moved to Florida.  The bastard.

And so I was left without a hairdresser. So I did what any sick mother would do. I just let my hair grow and grow. I didn't trust anyone else to cut it (I have had bad experiences there -just ask my friend AM).  I did have it trimmed once, after it had gotten to the point where a trim couldn't hurt, but basically I just left it long and tied it up out of the way.

Well, it was getting a bit ratty. And the hair loss / regrowth cycle over the years hadn't helped at all. I had hair of different lengths all around my head. I could practically tell you from the length of each straggly bit, which flare-up or medication had caused the original loss. And I was just completely sick of my hair. I was laying on it while I slept or it was wrapping around my neck. It was a pain in the neck to wash and dry every two days. I finally decided to give it to someone who might need and appreciate it more than I have of late.

I decided to donate it. Last week, I went to my old salon and asked if they participate in the Locks of Love program? They do. And then the salon lady very innocently asked me a wounding question: "Who do you want to cut your hair?" I hesitated because I didn't know who I liked besides Tom. I explained my problem and that I am a one-hairdresser girl. And guess what she told me? Tom is back!  Who knew? Hurray!!  Sorry Florida didn't work out and all (really). But hey! I am happy!

But I was still sick of my hair.

So today I went in again so that Tom could do The Deed.

Here is the before shot of me with Tom (thanks to Millie for taking it). That's me on the right in case you haven't guessed. Not the best picture no makeup or anything, but what can I say? It was Saturday morning and I was running late (Hey! I actually slept last night!). I don't know why my hair looks so orangey in this picture. It really isn't that color in real life. Or if it is, I have no idea why I waited so long to get rid of it.

This is not the first time I have grown my hair long and then chopped it all off. I think it is actually the fifth or sixth time I have done it. But it is the first time I have donated it (shame on me). I was going to get it cut short short -like Liza Minelli short (but nicer), but I was talked out of that. So I went for a bob. I will probably get the rest chopped off in a few weeks, who knows?  That is my hair that I am holding in the second picture, BTW. I think about 14 inches will go to Locks of Love.

I expected the kids to react badly to the change. They generally don't like change in any form. I have been preparing them for this for the last week, which definitely helped. I had been trying to persuade my daughter to come with me and maybe even to donate her own hair. She has a little friend who has hair loss (I don't know why). But nothing was getting her out of the house early on Saturday morning. She would far rather lounge in her jammies and watch cartoons until lunchtime. I can't blame her one iota.   

She did express an interest after I came home though, so maybe she will go next Saturday? I won't push her. It is entirely her decision to make.

Lessons Learned from The X-Men

So I was watching the movie X-Men II with my son the other day. I'm sure most of you know the story: The X-men have special powers because they are “mutants”. Their differences are pretty extreme and mostly useful (like the kid who has wings, etc). However they are facing a lot of discrimination and now there is a conspiracy to introduce new legislation to force them into “normalcy” by way of some magical vaccine (and where can I get me some of that?).

Well here’s the problem: Most of the X-man don’t want to be normal. They were born the way they are and are quite happy with themselves, thank you very much (OK there is that one token kid who would sacrifice uniqueness for mediocrity. But isn’t there always?). There are interesting parallels here with the Autism and Asperger’s community and those people outside that community who want to “cure” them -now that I think about it. But that wasn’t exactly what struck me at the time.

What struck me was something different:

As we were watching this movie, my son was talking about the mutants and how they were cool. He said he wanted to be a mutant, and I thought “Dude, you already are one” He has Ehlers-Danlos Syndrome, which is a genetic mutation. He may have another couple of mutations, too. There is his autism, of course, and I know I have one of the mutations for hemochromatosis, which he probably has too. And God -knows what else might be found over the years. So though it may be a strong word, -and he definitely cannot fly- he is a mutant.

As am I.

And then I got to thinking about myself in terms of being a mutant and wondering if that might be the reason for some of the weird stuff that has been going on with me. I am genetically different than most people and maybe that becomes obvious is some subtle ways. Particularly medicine. -I mean actual medication. When I start a new medication, I very rarely get the common side effect. In fact, now when I research a new med before taking it (a lesson learned the hard way), I always scroll down and down until I come to the “very rare” side effects, because those are the ones I usually get. Or –even worse –I get the side effect which ends up on the official “very rare” side effects list a year AFTER I used that medication and had that side effect (and was not believed). Because it’s that flaming rare, the drug has to be out on the market for 10 years before enough people like me wind up in the emergency room, and some executive finally says "Oh.   ...and put the screaming meemies on the side-effects list too, Mary-Jo. Apparently 0.387% of the population may get that one...."

I wonder if this weird medication thing is because I am a mutant? I was thinking about it and it makes sense to me because DNA is in everything. Every frickin cell in my entire body. A teeny change in DNA could have untold effects. –not just the ones in that immediate area and which are recognised as part of the mutation disease (condition... whatever), but there could be subtle differences in metabolism and body chemistry which cause drugs and other substances to just effect us differently.

And of course, none of this has ever been tested. Because let’s face it. Drug companies and medical studies do not account for genetic differences in their testing, except perhaps as a criterion for exclusion from the study.

It’s an interesting question, though. Isn’t it? Do people with genetic differences react differently to drugs? And it is a question that will only become more and more far-reaching as more of these conditions are discovered and uncovered. EDS is autosomal dominant, so the numbers are growing rapidly. There are many other much more common genetic disorders out there: Cystic Fibrosis, Down syndrome, Dwarfism, Hemophilia, Angelman Syndrome, -even color blindness! Add all of those into the mix alongside a growing recognition of mitochondrial diseases –which (in my mind anyway) are another genetic issue, - and you are dealing with a large and growing population who is not being adequately serviced by modern medicine. The only authority closely looking at us “mutants” is the health and life insurance companies. So they can deny us coverage.

Nice, huh?

I’m starting to think we mutants should get organized. Not into our respective diseases –although that is not a bad thing –but in addition to that, all the diseases/conditions/syndromes band together to as a powerful lobbying group, -(a SuperMutant group?). Together there must be millions of us, and voice in that number cannot be ignogred. We can take steps to ensure that we stop falling through the cracks in the health(ha ha)care system and start getting some airtime and respect.

Mutants of the world... Unite!

Who is with me?

*she looks around, sees no-one*

Oh well...    Back to our regularly scheduled programming...