Discussions By Condition: I cannot get a diagnosis.

Seizure-like Disorder Destroying Our Lives...HELP!

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: Helpmywife
  • November 25, 2009
  • 01:28 PM

Warning…this is going to be long, but PLEASE PLEASE read it. My marriage is on the brink of collapse and my wife is severely depressed. What makes this problem so very frustrating is that I can describe EXACTLY what happens, how it happens, and in what order it happens, but nobody can offer any help. My wife has been having “episodes” for the past few years, however in the last year they have become MUCH more frequent.


The Beginning: A few years ago, while I was away at college, my wife’s (girlfriend at the time) parents called me late at night to say they were taking her to the hospital for a drug test. She was walking into walls and talking incoherently. Although she has absolutely no history of drug abuse, they thought it must be that she had taken some of her mom’s painkillers or some other drug. At the hospital her symptoms began to clear, and, of course, her drug test was negative. We chalked it up to a freak occurrence - maybe some bad food or something - and forgot about it.


The Middle: It happened a few more times over the next year or so, but it was very infrequent and usually mild. She would just seem “vacant”, but able to respond and such. Her family physician thought that it could be panic attacks and prescribed her with Lexapro. Her condition did not improve. Two years ago, she had one severe enough that warranted another ER visit (mind you, w/o insurance of any type). They checked the obvious stuff (sugar level, blood pressure, drug test, EEG, CT scan, EKG), but nothing came up. By the time we left the ER that night, she was back to normal. At that time, they said her nutrition levels were low – especially potassium. They suggested some vitamins and eating high-potassium foods, but had no other suggestions. NOTE: She has been taking vitamin and iron supplements ever since (this will be important later). It happened a few more time of varying intensity, but I was able to start nailing down a definite pattern. It happens the EXACT same way, every time. The only difference is where it “stops” and how fast it gets there.


End:
Symptoms: There is a very specific order of events. It generally begins up to 24-hours PRIOR to the cognitive symptoms with heavy mood swings and profuse sweating. She can get very irritable and will start to sweat like a fat man in 90 degree weather – even in the dead of a Pennsylvania winter. The sweating will continue over the next several days until the episode is completely over. Lately, the episodes have lasted 3-4 days, with the first and last days being milder than the middle days.

Day 1 of cognitive effects: Her mood will be completely opposite – nice as pie. Literally, I can scream in her face with the nastiest words, and she won’t even flinch. Additionally, she’ll have diarrhea and usually a headache. Almost always, the cognitive symptoms will begin in the evening – usually after 5pm. As I said before, the symptoms following can stop at any time and will begin to “lift” in the opposite order that they appeared. When the cognitive symptoms begin, I’ll notice a change in her voice (it becomes slower and more drawn out). Her eyes will seem vacant – like she’s being hypnotized. Within 15-20min her muscles will begin to tremor all over - every muscle, from lips to legs. Sometimes (especially on the first day) it will not go past this point. If it continues, at first the tremors are light, but they get progressively worse until she can no longer hold things. She’ll get the hiccups (I’m guessing her diaphragm is spasming as well?). She can’t feed herself or drink. She’ll feel like she needs to use the bathroom frequently, but never actually does. Her gait becomes very wrong. She will not be able to walk unassisted (although she WILL try to. If I don’t run to help her, she will fall). By this point, speaking becomes very difficult. She tries, but it’s like her brain cannot figure out how to make words. For instance, she might attempt to say, “I need a drink”. What she says is, “I…I…eh…dri-….”. At this point it has been anywhere from 1-3 hours since the beginning. By now, she probably began passing out. She’ll be sitting at her computer or watching TV, and she’ll just pass out for a few minutes. Then she wakes up again. If I can get her to lie down in bed, sometimes she’ll fall asleep for hours – even if she’s only been awake for a few hours and got a full night’s rest. If this is the case, it’s near impossible to wake her. I can only get her up by shaking her violently and yelling, otherwise I must wait until she wakes on her own. She’ll also begin exhibiting the oddest symptom of all – she gets EXTREMELY aroused. She’ll start trying to ask me if I want to have sex (laboriously). This is NOT the way she normally behaves or talks. She’s actually fairly modest, and I have never EVER seen her act this way except while she is going through an episode. Of course, I turn her down. Literally less than 5 minutes later, she’ll say the EXACT same thing…as if the previous event had never occurred. Even if I say, “don’t you remember just asking me that 2 minutes ago??”, she’ll have no recollection. This may happen several times in a row. Also, if it’s gotten this far, the next day she will have no recollection of these events. By now I’m usually trying to get her to go to sleep. It seems this is the safest way for her to ride this out, since this behavior will last for hours and hours. Once she finally does fall asleep, her legs (and only her legs) are very restless. She’ll generally bend them at the knees – feet flat on the bed – and sway her legs from side to side…all while fast asleep and without moving her arms or head. This movement actually persisted through HEAVY doses of depakote while she was in an induced coma in December (see below).


Day 2: She’ll wake up feeling a little dizzy and “weird”, and she’ll have a headache again. She’s otherwise normal. She’ll be fine throughout the day and in a good mood (like before, as if nothing happened and life is bliss). Generally, the cognitive symptoms will repeat that evening, but this time she is almost guaranteed to get the full host of symptoms described above.


Day 3: Again, she might wake up feeling weird and with a headache. Again, she’s fine & happy during the day and the symptoms repeat in the evening. Her episode may be as bad as before, or she may seem to improve with a milder episode.

Day 4: She may have a mild episode again today (in which case the following will be on the 5th day). If her episode was mild the previous day, she may awake feeling normal, but very depressed and/or anxious. She’s in a bad mood. Sometimes she will have a panic attack, but the topic of the day is usually how much her life sucks and how nobody will ever find a cure. She’ll talk about how she’s never going to be able to have a baby (we’ve been holding off because of this problem) and how there is no reason for her to live. She’ll have absolutely no interest in doing anything. Whether this is a symptom of the disease, or just depression caused by the repeated episodes, we haven’t figured out yet. Of course, she is generally depressed due to this problem, but she will feel FAR worse this day than any other day. Even by her own accounts, she’ll note that she doesn’t understand why she feels so much worse that particular day. In other aspects, she’s back to normal. The cycle will repeat in a week or two.

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  • Warning…this is going to be long, but PLEASE PLEASE read it. My marriage is on the brink of collapse and my wife is severely depressed. What makes this problem so very frustrating is that I can describe EXACTLY what happens, how it happens, and in what order it happens, but nobody can offer any help. My wife has been having “episodes” for the past few years, however in the last year they have become MUCH more frequent. The Beginning: A few years ago, while I was away at college, my wife’s (girlfriend at the time) parents called me late at night to say they were taking her to the hospital for a drug test. She was walking into walls and talking incoherently. Although she has absolutely no history of drug abuse, they thought it must be that she had taken some of her mom’s painkillers or some other drug. At the hospital her symptoms began to clear, and, of course, her drug test was negative. We chalked it up to a freak occurrence - maybe some bad food or something - and forgot about it. The Middle: It happened a few more times over the next year or so, but it was very infrequent and usually mild. She would just seem “vacant”, but able to respond and such. Her family physician thought that it could be panic attacks and prescribed her with Lexapro. Her condition did not improve. Two years ago, she had one severe enough that warranted another ER visit (mind you, w/o insurance of any type). They checked the obvious stuff (sugar level, blood pressure, drug test, EEG, CT scan, EKG), but nothing came up. By the time we left the ER that night, she was back to normal. At that time, they said her nutrition levels were low – especially potassium. They suggested some vitamins and eating high-potassium foods, but had no other suggestions. NOTE: She has been taking vitamin and iron supplements ever since (this will be important later). It happened a few more time of varying intensity, but I was able to start nailing down a definite pattern. It happens the EXACT same way, every time. The only difference is where it “stops” and how fast it gets there. End:Symptoms: There is a very specific order of events. It generally begins up to 24-hours PRIOR to the cognitive symptoms with heavy mood swings and profuse sweating. She can get very irritable and will start to sweat like a fat man in 90 degree weather – even in the dead of a Pennsylvania winter. The sweating will continue over the next several days until the episode is completely over. Lately, the episodes have lasted 3-4 days, with the first and last days being milder than the middle days.Day 1 of cognitive effects: Her mood will be completely opposite – nice as pie. Literally, I can scream in her face with the nastiest words, and she won’t even flinch. Additionally, she’ll have diarrhea and usually a headache. Almost always, the cognitive symptoms will begin in the evening – usually after 5pm. As I said before, the symptoms following can stop at any time and will begin to “lift” in the opposite order that they appeared. When the cognitive symptoms begin, I’ll notice a change in her voice (it becomes slower and more drawn out). Her eyes will seem vacant – like she’s being hypnotized. Within 15-20min her muscles will begin to tremor all over - every muscle, from lips to legs. Sometimes (especially on the first day) it will not go past this point. If it continues, at first the tremors are light, but they get progressively worse until she can no longer hold things. She’ll get the hiccups (I’m guessing her diaphragm is spasming as well?). She can’t feed herself or drink. She’ll feel like she needs to use the bathroom frequently, but never actually does. Her gait becomes very wrong. She will not be able to walk unassisted (although she WILL try to. If I don’t run to help her, she will fall). By this point, speaking becomes very difficult. She tries, but it’s like her brain cannot figure out how to make words. For instance, she might attempt to say, “I need a drink”. What she says is, “I…I…eh…dri-….”. At this point it has been anywhere from 1-3 hours since the beginning. By now, she probably began passing out. She’ll be sitting at her computer or watching TV, and she’ll just pass out for a few minutes. Then she wakes up again. If I can get her to lie down in bed, sometimes she’ll fall asleep for hours – even if she’s only been awake for a few hours and got a full night’s rest. If this is the case, it’s near impossible to wake her. I can only get her up by shaking her violently and yelling, otherwise I must wait until she wakes on her own. She’ll also begin exhibiting the oddest symptom of all – she gets EXTREMELY aroused. She’ll start trying to ask me if I want to have sex (laboriously). This is NOT the way she normally behaves or talks. She’s actually fairly modest, and I have never EVER seen her act this way except while she is going through an episode. Of course, I turn her down. Literally less than 5 minutes later, she’ll say the EXACT same thing…as if the previous event had never occurred. Even if I say, “don’t you remember just asking me that 2 minutes ago??”, she’ll have no recollection. This may happen several times in a row. Also, if it’s gotten this far, the next day she will have no recollection of these events. By now I’m usually trying to get her to go to sleep. It seems this is the safest way for her to ride this out, since this behavior will last for hours and hours. Once she finally does fall asleep, her legs (and only her legs) are very restless. She’ll generally bend them at the knees – feet flat on the bed – and sway her legs from side to side…all while fast asleep and without moving her arms or head. This movement actually persisted through HEAVY doses of depakote while she was in an induced coma in December (see below). Day 2: She’ll wake up feeling a little dizzy and “weird”, and she’ll have a headache again. She’s otherwise normal. She’ll be fine throughout the day and in a good mood (like before, as if nothing happened and life is bliss). Generally, the cognitive symptoms will repeat that evening, but this time she is almost guaranteed to get the full host of symptoms described above. Day 3: Again, she might wake up feeling weird and with a headache. Again, she’s fine & happy during the day and the symptoms repeat in the evening. Her episode may be as bad as before, or she may seem to improve with a milder episode. Day 4: She may have a mild episode again today (in which case the following will be on the 5th day). If her episode was mild the previous day, she may awake feeling normal, but very depressed and/or anxious. She’s in a bad mood. Sometimes she will have a panic attack, but the topic of the day is usually how much her life sucks and how nobody will ever find a cure. She’ll talk about how she’s never going to be able to have a baby (we’ve been holding off because of this problem) and how there is no reason for her to live. She’ll have absolutely no interest in doing anything. Whether this is a symptom of the disease, or just depression caused by the repeated episodes, we haven’t figured out yet. Of course, she is generally depressed due to this problem, but she will feel FAR worse this day than any other day. Even by her own accounts, she’ll note that she doesn’t understand why she feels so much worse that particular day. In other aspects, she’s back to normal. The cycle will repeat in a week or two.I would try going onto diagnosispro.com and the Merck website and check each of her symptoms individually starting with the excessive sweating and print out all the results and see what cross-matches, make a list and go to the doctor with the list and start demanding more tests. It could be anything from Delirium tremens, Pheochromocytoma to Dumping Syndrome, anxiety, hypoglacemia, etc. Also, get a print out of all her lab results and input them on the site as well. Even if it is something small it could be part of what is going on like a slightly elevated WBC or Low Potassium. Just the sweating alone can be the cause of so many things, so start from there. When you do find something you think it is try going to the Mayo Clinic website and look it up the actual disease and compare as well since it is pretty cut and dry with the info for diseases on that site. By the way I am NOT a doctor by any stretch of the imagination. Just a fellow undiagnosed sufferer and saw your post an how desperate you are. I hope you find help soon. I have recently managed to narrow down my list to 5 possibilities by doing this with Cushing's heading up the list with 19 overlapping symptoms and lab results for my next doctor's visit. Check her BP and heart rate both during the attacks and in between and keep records as well. Check blood sugar with a meter you can buy at any drug store and check the urine for ketones with strips you can get at the drug store as well. Keep records of everything you find. Good luck!
    Anonymous 42789 Replies
    • November 26, 2009
    • 01:27 PM
    • 0
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  • This actually got double-posted. Here is the rest of the original post: Other symptoms: There have been a number of other symptoms we have noticed that may or may not directly relate to this specific issue. She’s had a significant increase in hair loss.She has dry, flakey, pale skin (although she is genetically fair skinned).She’s had stomach “issues” for a number of years – preceding this problem – where she will feel nauseas and occasionally have days of vomiting. This occurs once every few weeks or so.She has an irregular menstrual cycle.She has trouble gaining weight, even when the caloric intake is significant for an extended period of time. She eats regularly, drinks soda all day long, and snacks frequently, yet at 64”, she weighs just 102lbs.During an episode, her skin and breath have a strange odor. It smells like nothing I can definitively identify.Her left eyelid is normally slightly more “closed” than her right. This becomes MUCH more pronounced (left eye can be half-as-open as the right) during an episode.She has trouble falling asleep - and trouble staying asleep once she does.When unbothered, she can sleep for 12+ hours but still feel tired.Recently, she’s been experiencing some short-term memory loss even outside of episodes.She has absolutely no ambition to do practically anything. This may be depression-related. Tests: Although she had some tests done prior to this December, the majority has been done since. In December 2008, on a Wednesday she had an episode severe enough to take her to the ER. They admitted her for the night for testing, but (as usual) by the next day her symptoms had subsided and they sent her home on Thursday. She was fine that night. So, Friday I went to work, but when I came home I found her on the couch - naked and shaking. She was awake, but could not respond whatsoever. I called the ambulance (inside of which she peed herself). When she got to the ER they believed it was a static seizure, so they sedated her with heavy doses of depakote and gave her anti-seizure medication. In their words, it was “enough to take down a cow”. Nothing – the symptoms continued. At the hospital that night they gave her an EEG, CT scan, EKG, blood test, drug test, sugar test. Nothing. The next day (she’s still sedated, but still moving her legs as described above) they gave her a brain MRI, bacterial cultures (for possible septicemia), and another EEG, CT scan, EKG, blood test, and deeper drug test. They repeat most of these tests, daily, over the next week. The only thing that shows up is a “slow” EEG (which they chalk up to the depakote) and SEVERE malnutrition – including anemia. Remember the supplements I talked about before? They were selected by our pharmacist, and, according to him, she should be getting 500% of her requirements of iron – excluding anything taken in as food. She’s also taking a normal adult dosage of Centrum Performance. She also eats fairly regularly (she has no eating disorders). Yet, somehow, she’s “severely” malnourished? They kept her in the hospital for a week, but were unable to find anything except malnutrition. Given the severity or the malnutrition, they believed she simply needed to eat better – even though I told them about the supplements. So, she saw a hematologist for vitamin injections, and saw a dietitian. After her release she did her best to eat well. I did all the shopping and had complete control over her diet. In addition to the supplements and injections she was already taking, she was prescribed further vitamin supplements, which she took. It went an entire month without episodes, and we thought, “Finally! The answer!”. Unfortunately, it was not so…New Year’s Eve and New Year’s Day she had episodes of mild severity. 3.5 weeks later, more episodes. The frequency began picking up and within a couple of months it was back to 3-4 day episodes separated by 1-2 weeks. Since her stay, she’s had her thyroid tested (THS twice, T3, T4), continued to take anti-seizure medication, and had several blood tests. Recently, she saw an endocronogist who had her tested for possible carcinoid of the adrenal gland. Although her Serotonin was elevated (330 on a range of 0-180), the 5-HIAA and Chromagnin A were normal. His conclusion was that it was not an endocrine disorder. She began seeing a psychiatrist to deal with the depression, who sent her to a neuro-psychologist for comprehensive neuro-psychological testing. Other than the depression, the test revealed that she was much “slower” with her left arm than her right – leading to the physician asking if she had ever injured that arm in any way. She hadn’t, and he had no other possible explanation for the anomaly. She is now being treated for anxiety and depression; however it has not resolved her episodic problem. Our family physician is only seeing her once every 3 months and has acknowledged that he has no other ideas regarding her condition. My wife is 25 years old, and we are recently married. What is supposed to be the best time in our relationship is very much the worst. We are absolutely desperate. Any help would be appreciated…
    Helpmywife 4 Replies
    • November 30, 2009
    • 01:23 PM
    • 0
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