I don't know what's wrong with me.. Am I mis-diagnosed??

Sorry, this is probably going to be a long post, because there's a lot of questions I have.

ok, a bit of background info: I was always an anxious child.. and was finally diagnosed with Panic and anxiety disorder when I was 17. I'm 28 now and had a few rough years with agoraphobia, and depression, but for the most part (except for a bad reaction to a new med a few days ago), my anxiety has been relatively good the past 3 years. I moved out of my parents' house, got a job and am getting ready to go back to school in the fall to become a social worker. Seems simple, right? Well here's where it gets iffy.

I have (and always have had) problems with insomnia. It got so bad the other day that I had to go to the hospital to get something to calm me down so I could sleep. This isn't the first time I've been to the hospital for lack of sleep.. I went once before when I hadn't slept in over 3 days and felt like I was going delirious. Ok now here's where it gets interesting. I've tried just about every sleeping pill known to man kind and nothing works. The ativan calmed me down, and I did sleep that night, as I was up for almost two days straight... and my doctor put me back on risperadol which she said would help with my anxiety and insomnia. It's not helping at all. I'm getting less than 4 hours of sleep a night and can't sleep during the day, even though I feel so physically tired.. I feel like I'm about to collapse any minute from fatique, but yet I still can't sleep. How can one be so tired and exhausted but not able to sleep? Ok here's another little background info: Two years ago ish, I went to the sleep clinic to see if I had sleep apnea.. the pre test showed that I had symptoms but the sleep study test didn't show any signs of sleep apnea. They gave me a cpap machine anyway because the sleep doctor said that all my symptoms (except for falling asleep right away) show that of sleep apnea. While I stopped using my machine about a year ago because it was making me break out and was very uncomfortable to wear (I have to wear the full face one because of my allergies)... but I'm tying to think back and not sure if I was even sleeping WHEN I was using it. Can sleep apnea cause insomnia? I thought it did the reverse.. make you so tired that you fall asleep right away. If I have sleep apnea then why aren't I sleeping when I feel tired? Also, I wanted to wait to get another sleep study done because I didn't want to keep using the cpap if I indeed don't have sleep apnea because what if it can do some harm?

Here's where it gets even more interesting: Last year I was diagnosed with temperal lobe epilepsy. I find it interesting that 'that' type of epilepsy affects the emotions part of the brain and often people are mis diagnosed with psychiatric conditions when in fact they have TLE. I also read that that type of epilepsy can cause insomnia. I'm wondering if all my problems are because I'm not on the right seizure meds yet? I will know the results of my MRI next month when I go back to see the neurologist. Maybe then I will get some answers. I do know though that when I was on topomax (mood stabilizer but also a seizure med), my anxiety was completely gone. Now that I'm off it, it's back. But I also couldn't sleep then and now. So, I dunno... ahh I'm just so frustrated! I don't know if this is from lack of sleep or the temperal lobe epilepsy or side effects from meds, but I often have trouble concentrating and trouble processing what people are saying. I lose my focus a lot (sometimes I think I have ADD!).. takes me an hour to read just 20 pages because my mind wanders so much and I get so distracted. I can't stay still for very long while studying or watching tv.. and always need to take breaks. Sometimes I feel really dense.. because I don't always get things like my other friends do.. I'm always the last person to get the punchline to a joke.. I'm so very out of it all the time and have trouble comprehending simple things sometimes and get confused easily.

I just want to know what it is that I have and how to go abouts finding the right meds. I also have been diagnosed with severe ocd (obsessive thoughts).. and seasonal depression. I just want to get this all figured out before I start school this fall because I can't be in school and feel like a zombie all day.

ugh.. I hate not sleeping and not knowing why!!

Any ideas or suggestions?

Sleep apnea can cause insomnia, but so can a plethora of other things. Sleep apnea is when you stop breathing during sleep, either because of an obstruction in the esophagus or the brain fails to signal the muscles to breathe. I'm more inclined to believe your insomnia is due to anxiety, not sleep apnea. But, I'm not encouraging you to stop wearing the anti-sleep apnea dohickey until you talk to your doctor. Just to be safe... And there is the possibility that more than one condition can cause insomnia.

Do you have different doctor for your temporal lobe epilepsy? And, if so, have you told him/her about your insomnia?

Thanks Myers.. yes I do have a different doctor for my seizures.. I don't see him very often though.. i've only seen him once before and see him again next month to get the results of my MRI. I agree it's probably best to start wearing the cpap machine again until I get the sleep results.. (I also didn't realize that sleep apnea can cause insomnia), but you're right it's more likely due to my anxiety, as my anxiety is and always has been worse at night. I just don't understand that if I don't sleep at night and I feel so tired during the day, why can't I even sleep for a little bit during the day when I'm not feeling anxious at all? I'm just so frustrated of feeling so out of it all the time

Amanda,

Your best bet is to talk to the nuerologist and the pdoc about ALL your symptoms. Since we don't have this problem, it wouldn't be ethical for us to try and advise you. You really need to talk all this over with both docs and tell both what the other one said.

Best of luck!

Hi sweet pea.......

I so feel what you say. I have gotten to the point of being so sleep deprived that I would hallucinate. I have ended up in psych triage due to the fact that I saw the bus I was on on fire! Terrifying.....

I was invetsigated for the same things as you, sleep apnoea, night terrors, narcolepsy and so on. I have also had occassions where they thought it may have been epilepsy. Sleep meds DO NOT work on me either. I have tried tham all plus enough anti-psychotics to sedate a horse......I have tried melatonin supplements, meditation, and gosh knows all the sleep hygeine techniques in the book.

The only thing I can think of other that what others have said, is have you had a blood panel done recently? Thyroid, sex hormones, vitamin D, vitamin B, parathyroid, hemoglobin, red cell count, full liver function(ELFT) and urine analysis and glucose tolerance test(GTT) for diabetes.

Any number of the body systems can cause sleep disruption if they are not functioning properly. And being so tired you think you are going to fall over does not mean you will necessarily sleep. Sleep is a whole other factor from just being tired. I call it "tired but wired". My mind does not stop, but my sleep stuff has been put down to AS and being in perimenopause. I have not slept well my whole life.

Please talk to your psychiatrist if you have one. I do not want to hazard a guess here, but anxiety can be a bit of the chicken before the egg syndrome. Are you suffering insomnia because of anxiety or anxiety because of insomnia? Which then perpetuates more anxiety, and more insomnia

Take good care babe.......I am sending you heaps of cyber hugs

Michah

If you have sleep apnea and had the sleep study done with the electrodes on your chest and head - this should have showed the sleep apnea. I would imagine the face apparatus is very uncomfortable and if you don't have it, why use it. I think your post describes all your concerns very well and if I were you, I would take it with you to the doctors. I think all your doctors need to consult with each other and figure out what's wrong. I'm leaning to the epilepsy and I think you'll feel better if you're on the right medicine for this problem. Also have the full blood work done as Michah suggested. Do you drink coffee, tea, or coke/pepsi?

Sorry I cant tell you what you have. your doctors are the ones that can do that. it takes time to find the right medications. the restlessness, lack of concentration could be your medication reactions. keep working with your doctors and one day you will hit on the right meds. I don't know anything about epilepsy so cant help you there. But I do work with someone that has sleep apnea and insomnia.

We have a client thats a frequent "visitor"here at the hospital ER and mental ward. He that sleep apnea and insomnia but the insomnia isn't caused by the sleep apnea. he falls asleep and stops breathing then startles awake. He sits up and catches his breath. sometimes he goes right back to sleep and other times he doesnt. when he's no longer in an apnea state he sends himself into panic attacks and obsessive thoughts about dying in his sleep. the idea that he could die in his sleep is very real. this doesn't help when hes out of danger of dying and sending himself int panic attacks.

Its very hard to work with him because of the reality of his situation. we cant just say to him ok dangers over now you're ok you're awake you're not going to die tonight.

what he has found helpful to him is -

dialing a friend or one of us right before going to bed. this way if he needs to talk to someone he just needs to press redial instead of remembering the whole phone number.

he has a life alert program. they check on him periodically through the night so he knows he's not alone and help is just a step awake if needs them. They also do non emergency checks to make sure his life alert equipment is working. We have noticed a drastic cut back on his panic attack induced insomnia since connecting him with the life alert program.

he doesn't like using the CPAP machine because of the noise and claustrophobic feeling of the mask. After researching his options with his psychiatrist and physician he has undergone some extensive surgeries that has opened and unobstructed his airways. This has also helped a lot.

he has also had his medications adjusted. right now hes on a cocktail of klonopin, welbutrin and abilify which seems to be working for him. It took a long time to find this right combo but he says it was well worth it.

talk with your doctors maybe you are a candidate for surgery and life alert program.

How are you doing, Amanda_1981?

I'm the same way.. sleeping meds (I think I've tried just about every single one of them) do not work on me.. I saw my family doctor last week after going to the ER for my big panic attack caused by insomnia, and she gave me 3mg of risperadol to take each night. She said that would help my sleep but I'm still having trouble. The last two nights, the only way I can manage to at least get a few hours of sleep is to take the risperadol and also take 4 gravols. (usually one of them is enough to knock a person out for hours!) Even taking some ativan that the ER doc gave me is not helping.. I'm so desperate for sleep, I've been like this my whole life too.. always have had insomnia problems and what feels like chronic fatigue syndrome.

I had some blood work done a few months ago when I went for my yearly physical..not sure all what my doctor was checking for but I'm pretty sure she checked my liver and kidneys and hemoglobin and iron and stuff. The whole sha-blang. I never heard anything back so I'm assumming no news is good news. (In the past, they have always called me to let me know if my iron was low, etc).

I know what you mean about the 'tired but wired' thing. It's like I'm so tired and when I'm up and about I feel like I'm going to fall over.. I just feel so tired to the extreme, yet when I lay down to try and fall asleep, I feel wide awake and I can't stay still. Weird eh?

I think my anxiety and insomnia are correlated. I have anxiety when I don't sleep.. but I also don't sleep when I have anxiety.. I'm not sure which came first, if I had to guess though, I'd say the anxiety, as I've had it all my life.

I think part of the reason for my fatigue is: (well lack of sleep for one thing) but also, I don't eat enough protein and iron foods during the day.. and my anxiety has taken a toll over the past several years (I remember being such an anxious child way back to when I was in kindergarten).. that my body just does not know how to relax itself to sleep. I think maybe I should take up some yoga or tai chi or something to help relax myself at night. And I need to re learn the deep breathing techniques (I do find them hard, as I'm so used to breathing fast that when I start to slow down my breathing, it doesn't feel normal and it freaks me out and it feels like I'm going to stop breathing.. if that makes any sense)... in other words, I need to find a way to relax. :S

Thanks amandalouise, for the tips and advice! I like the idea of calling someone right before I go to bed.. not sure what the life alert is though? I think only people with life threatening illnesses can use it for when they are home alone?? I'll have to look into that more, thanks for letting me know!

I agree, I think the epilepsy has a lot to do with it too. I also would love to have a meeting with not only my family doctor, but also my neurologist and pdoc so together as a team they could decide which meds I should be on.
I used to drink a few cans of caffeinated pop/soda a day and have a coffee once in a blue moon, but ever since my anxiety got bad again, I've stopped drinking caffeine. But at the rate I'm going with feeling so tired during the day and school coming up, I may have to resort to drinking coffee again (but only in the morning).

feeling less anxious today, but still feel like I haven't slept in weeks. I feel like I just need one good long night's sleep and then I'd feel a whole lot better...

(((((((((Amanda))))

Just had a desire to hug you so....HUG!!!


You know I attempted to get in a profession where I would be making a huge difference, too........but my anxiety is so high I could not sit still through class or through career, it is too much, I need, constant, constant emotional stimulation..

I was wondering if you get through it all and become a professional who helps others....

......do it for me, Amanda...I am deeply happy for you as you approach your dream..

I will live vicariously through you- you are such an inspiration

i see you are in canada. Here in america apnea and sleep apnea are considered life threatening illnesses because people with it suddenly stop breathing.theres never a guarantee that their body will jump start their breathing again. one second they are carrying on with their life and the next they suddenly stop breathing and die. some people live their whole lives with their breathing stopping and their bodys startle reflex restarting their breathing other people live with it for a while and their body one day doesn't do their startle reflex to start their breathing again. they just stop breathing and die. here doctors think a lot of the babies, children, teens and adults that die of sudden death syndrome may have had undiagnosed untreated apnea. with sleep apnea a person goes to sleep and they stop breathing. sometimes their bodys startle reflex wakes them up to jump start the breathing again other times it doesn't. they just die in their sleep.

Life altert is for all kinds of things not just life threatening. senoirs and people over 50 are eligable because the elderly tend to fall a lot breaking their bones. the handicapped are eligable because they cant always get to a phone if they fall out of their wheelchairs or they have limited mobility they may end up laying on their floors with all kinds of problems for hours and days until someone comes to check on them. People with all kinds of health problems like heart problems respiratory problems, epilepsy, apnea, sleep apnea, polio, MS, CP, mental retardation, theres a lot of things that life alert is there for.

Life alert it like having 911 and also like having medic alert. you wear a necklace with a small button on it. if something happens you dont have to get to a phone and dial 911, you don't have to stay in pain waiting for a neighbor or friend or family member to come. you push the button and the ambulance, paramedics are dispatched right then and there to where ever you are. my mom has recently got one because she lives by herself. she was going out to check her mailbox, slipped, broke her hip. now if she has a fall all she has to do is push the button and within 3 minutes the paramedics are there. My coworker who has epilepsy wears one. it came in handy one day at work when she had a seizure on the job. we have a client who has a wheelchair. one day she was trying to get herself a glass of milk and fell out of her wheelchair. she didnt get hurt but living on her own she couldnt get herself off the floor. the paramedics were dispatched and they helped her back up into her chair. If she didnt have life alert she would have been laying on that floor for the whole weekend. Ive had life alert for quite a few years because I have DID. DID is not life threatening but it has gotten me into some pretty unsafe situations where I have had to call for help.

life alert is for a lot of different reasons. you having a diagnosis of epilepsy and apnea well qualifies you for it. I don't know if its in canada but you can call the toll free number to find out.

The number is 1-800-360-0329 and the website is http://lifealert.com/

I know Canada has a similar program like life alert its called lifeline.

the website is http://www.lifeline.ca/content/English and the phone number is 1-866-784-1992.

its also for people with all kinds of health problems and senors not necessarily for just life threatening things. but you having apnea and epilepsy you already qualify.

for both programs in some areas theres a one time instillation and monthly fees but all kinds of medical insurances cover it just like they cover 911 because it works the same way.