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the insomnia expose
Posted by Sakina on November 29, 1998 at 22:18:24:This is a reprint of the letter I sent Meg. I took out the Dr's names and my phone number. I very much want to be involved with this expose. Anyone who wishes to contact me, please post, or try the e-mail (no promises that I'll get an e-mail, posting is better, then I could privately e-mail somebody). My letter:
Hello, my name is Sakina Gerhard. Here's my insomnia story, I'll try to make it concise. Insomnia has ruined my life. I am crippled from this disease, and even when I've contacted the very top sleep lab, Stanford Sleep Sciences, Dr.
*** and the world famous (partially retired) Dr. ***, I was not given any more relevant information then a very circuitous suggestion that it was probably psychological. Now this is why this is frustrating:
I am CERTIFIABLY not depressed, anxious or anything else. I spent a voluntary week at a private psychiatric hospital to try and understand the source of my insomnia, and many doctors concluded I was suffering no psychiatriac troubles, and my insomnia was out of their scope.
If it were just a mild sleeplessness, I could cope, but I am suffering a total sleeplessness. I am able to obtain some measure of relief with pills, but only at three times the recommended dosage, and only ambien. Without taking ambien, I cannot sleep period. Since the first night of my insomnia onset, exactly Dec 1 of last year, I have not been able to
sleep. I never had insomnia before, and used to sleep ten hour nights. Quite suddenly, at the age of 22, without any precipitating life events,I could not fall asleep. Within a few days I wound up begging at the ER for relief. Quickly I had an overnight sleep study, which showed no apnea, no limb movements, but many arousals, and no sleep until I was medicated. I have since had a two week wrist actigraph which has proved that unless I medicate I cannot sleep AT ALL. This is total insomnia,and is apparently very rare. It is frightening, and often I feel it will kill me if I do not get some sleep. It makes me so ill, and so crazy. A few days of sleeplessness makes me hallucinate and makes me suicidal.
I can't tell you how many times I have felt suicidal because of this disorder. Still, I have no explanations, and no compelling interest from the sleep world. You would think total insomnia would interest somebody!
Aside from overdosing myself on sleeping pills trying to sleep, and being hospitalized for four days on IV drugs that did not work(including sodium pentothal), I have also lost my education. I was a straight A honors English major in college, and had won an award for my writing. I was the featured Poet of the Month for May of last year at
PoetryMagazine.Com (Perhaps June). I had an honorary position in my college as a student tutor, but all that is gone now. Because of my disorder my schooling has fizzled. I have a part time job on a "come as you want" basis. My family has been divided, my medical bills are sky high, and still I am no closer to an answer then before.
I have been tested for so many things, and yet I know the problem is that the cause of primary insomnias such as mine are unknown. For this I fault the medical profession, because the research truly is not being done. At some point I offered myself as a candidate for further studies,for the sake of science, but still have not been taken up on it.
Furthermore, my meetings with Dr. ***, although recently somewhat improved (I say that tentatively) were initially degrading. Over and over again he has told me it is not possible for someone to have insomnia such as mine, and yet in my fear I looked to the Internet,poring through forums, trying to find others such as myself, the sleepless, and I did actually find others who claim problems that sound
as bad as my own. Obviously it exists. Plus, Dr. *** has my
actigraph proof, and he doesn't seem especially interested in its validity, although he admits the results are verifiable. Still, every doctor I have ever seen has been content to chalk my severe debilitating disorder up to some hidden "depression" or "anxiety." Yet every psychiatrist I see decides I am suffering a nervous system disorder.Besides which no measure of antidepressants has ever done one speck of good, and I had any symptoms or feelings of either anxiety or depression. Except as a result of not sleeping, and then very acutely!
There was a story written in the SF Chronicle, 1986, called "The Man Who Hasn't Slept Since WWII." This guy COULD NOT sleep, even with pills(this was pre-ambien, mind you), and had been awake since WWII.Apparantly certain forms of brain damage can cause total insomnia, as in his case. Experiments done on cats show that discrete lesions of the brainstem cause unrelenting insomnia (Michael Jouvet did these studies,I believe) There is even a disease called Fatal Familial Insomnia, that causes total insomnia, not to mention death. It is a variant of Creutzfeldt-Jakobz Disease, also known as Mad Cow Disease. And encephalitis can cause total insomnia, according to Dr. Oliver Sacks in
his book "Awakenings." Really, the long term effects of sleep deprivation are unknown. Sleep researchers deny that it can kill you,and Dr. *** once told me if not sleeping was making me hallucinate(visual tracers and such) it could only be because of a pre-existing psychotic condition. Actually, he told me this less then two weeks ago! Anyway, it kills rats in thirty days, and it CERTAINLY can effect a
person's brain, not to mention their general health. In my experience it causes vomiting, heart arrythmias, shaking, and nervous collapse. All the studies done on sleep deprivation were done on non-insomniacs, for periods of less than 100 hours. Normal people fall into "micro-sleep" after mild sleep deprivation, which is a compensatory mechanism of the brain to make you sleep. The purpose of sleep is unknown, but it is hypothesized to be a way for your brain to prevent brain damage from amine accumulation. So what happens if you do not have micro-sleeps, and you just have frank insomnia? Your brain is probably still accumulating
those pesky amines, but now you have no insurance. Make sense? Obviously, this sort of thing should be a major public health concern! The mere fact that sleep deprivation was such an effective Nazi WWII torture method should alert sleep professionals, but I get the feeling that they're all well rested! They all give the same rigamarole, it's
just you're nerves, you need to relax, drink some warm milk. Then they charge you $1500 on the way out (or more). The whole sleep hygeine thing is so ludicrous. Real cures for a real problem need to be found.
I have tried so many medications you wouldn't believe it: from anti-psychotics to benzodiazepines to SSRI's to tricyclics to beta blockers to anticonvulsants, barbiturates, Lithium, everything! Almost nothing even makes a dent...
Obviously my condition is complicated, but it is a key example of the extreme ruin insomnia can wreak upon your life. Like any other disease it should be properly researched. But sadly, no research will be done on
it until researchers "admit" it is a "real" disease, and start doing their homework. Here the patient is blamed, and no help is obtainable. It makes me horribly sad that my life has been taken from me. I've never been the kind of person to scream Victim; I believe firmly in self-help, but in disease states there is more then just willing your symptoms
away. How rude and dangerous would it be to tell cancer patients,heart patients, people with broken legs that they just need to improve their mood! Is insomnia truly any different? Look, I HAD cancer, I had thyroid cancer as a child, three surgeries, radioactive iodine therapy, and am
permanently dependant on hormone pills to live --I've been through the medical mill before. Honestly, I would rather have cancer again then the bizarre insomnia I have now.
I can sympathize with anyone else going through any other degree of this disease. More then anything I just want advances made. I am currently four months pregnant, and just facing the uncertainty that lies ahead for me makes me desperate for an answer, for a sliver of hope, for me,
for my future baby, for all of the other insomnia victims. Whether or not you wish to contact me, I hope you can push for what I have been to exhausted an unstable to push for: reform. If I can do anything at all,
please call me (or post on the forum, I check it) My e-mail is spotty but if you want you can try my boyfriend's e-mail: mystrymic@iscweb.com.
I would love to share my story with others, towards ending insomnia forever.
Sincerely,
Sakina Gerhard
Petaluma CA
Nov 28, 1998
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