How Wonderful It Would be to Sleep, but I have Chronic Insomnia!

[SleepyGirl]

Hi All,

My name is Sara and I just wanted to introduce myself to this forum. For the past year I have maybe gotten a total of 50 hours of sleep. I know many would think this is impossible, but I'm telling you and I tell all my vast array of doctors that it's not. I have been to shrinks, a "sleep medicine doctor" who really knew basically nothing about my condition, primary care physicians, emergency rooms, and so many other types of specialists that my poor memory can't even remember them all or all their specialties. I have been on benzos (which are increasingly hard to get where I live because so many people abuse them just for fun), pain pills that have sedative effects, ambien and all those newer "hypnotics," Trazodone (which everyone says "knocks them out!"), and a host of what I call "crazy person meds" like Seroquel and many others even stronger than that. I unfortunately even got to the point that I was hospitalized in a mental hospital where they treated me horribly and did not help my problem at all and I gave them a full month to figure something out. The shrinks there were absolutely dreadful as it was a state run facility and thought I was lying about not sleeping because I would lay in bed at night with my eyes closed. Hello folks? Just because my eyes were closed out of shear exhaustion does not mean I was sleeping. I don't know what's worse - not sleeping or basically being called a liar and a crazy person. Both are bad and one destroys your soul and self-esteem. After a while without sleep you actually even feel and start acting a little crazy, so I have even believed at times that this was "all in head" and I that I must be a psychopath or something.

Anyway, I have studied sleep almost on a daily basis to try and discover what may really be wrong with me and ways to improve the severity of my symptoms. Currently, I am taking California Poppy Seed Extract because it was so widely touted on the Dr. Oz show that my boyfriend convinced me it was worth a shot. It does make me feel a little less stressed throughout the day if I take 6-12 drops three times a day in some juice or under my tongue, but it doesn't really seem like it's going to me that magic solution that I was hoping and praying for.

I also had a sleep study done several months ago that showed I never hit REM sleep and only hit stage I and II levels of sleep which are really not sufficient enough to get one through a productive life. When I called for the results they said that nothing was "abnormal," that I did not have sleep apnea or anything like that, but I'm sorry, not getting any deep refreshing sleep every single night is VERY abnormal so I don't know why they just said I was ok and dismissed me like that. They too said the best solution for me would be cognitive behavioral therapy, but I have even done that and even though I have had a very stressful life with situations of losing my dream job, almost being homeless, having an abusive childhood, being abused by men in my life, etc., I feel like I have dealt the best I could with those situations and have always tried to move forward, so I don't believe my not sleeping is totally due to trauma although it may have 15% or so to do with it.

The Internet can be a bad tool sometimes too because there have been times that I thought I must have Fatal Familial or some type of uninherited fatal insomnia, but every doctor I've asked about that says it is not what I have and then they automatically think I have mental problems for asking or am some sort of hypochondriac, but it feels really bad to be completely dismissed without them even running any tests to at least quell some of my fears about that. To tell you the truth, there are times I wish it was fatal because I feel so bad most of the time and I just want to know there will be an end to it all eventually.

Recently, I have been trying to be more optimistic. I am seeing a new Internal Medicine Doc tomorrow and I hope he can at least provide some more answers or be the "director" of all my visits to specialists and can refer me to them because it is really confusing at this point with all the doctors I have seen on my own. It is also hard to find at least a sympathetic doctor hear in the "belly button" of Florida where the doctors are not very good and can only deal with the simplest of problems, not those of a chronic nature.

Anyway, I just wanted to introduce myself and see if there is anyone out there that can relate so that I know I am not just a crazy person. It is easy to feel like I am the only person in the world with my problem because I know no one else that has it, or anything like it.

Please reply to my post, and also feel free to send me private messages or follow me on Twitter!

Hugs,
Sara (aka "SleepyGirl")

PS - I got some ZZZZZ's night only to awaken in the middle of the night because I was coughing! Darnit!

[houghchrst]

HI Sara and welcome. I am so sorry about your situation though I am sure that is of no comfort. I was an insomniac for years and then about 4-5 years ago I seemed to have hit on the right med combination for other issues and suddenly started sleeping through the night. I too went through the sleeping meds, herbal remedies, situational changes and nothing seems to work.

I can't imagine not sleeping even a bit here or there.

I hope you get some relief coming here and that you are able to stay with us.

Prayers your new doc is successful.

[archivesgirl]

Just one "Sleep Doc"?

Hi Sara and welcome.

"I also had a sleep study done several months ago that showed I never hit REM sleep and only hit stage I and II levels of sleep which are really not sufficient enough to get one through a productive life. When I called for the results they said that nothing was "abnormal," that I did not have sleep apnea or anything like that, but I'm sorry, not getting any deep refreshing sleep every single night is VERY abnormal so I don't know why they just said I was ok and dismissed me like that. They too said the best solution for me would be cognitive behavioral therapy, but I have even done that and even though I have had a very stressful life with situations of losing my dream job, almost being homeless, having an abusive childhood, being abused by men in my life, etc., I feel like I have dealt the best I could with those situations and have always tried to move forward, so I don't believe my not sleeping is totally due to trauma although it may have 15% or so to do with it."

You had to call for the results? Didn't you have a return appointment with the Sleep Doctor who ordered the sleep study? Also, it's important to know if that physician is a pulmonologist or a sleep neurologist or a general sleep physician. You need to be seen by a Sleep Neurologist who covers all of the Sleep Disorders rather than a Pulmonary doc who covers the lungs and thus Sleep Apnea. The doctor who ordered the study needs to sit down with you and show you the results of the polysomnogram and discuss your results with regard to the stages of sleep you entered and what it all means. The Polysomnogram will state how many minutes you slept and in what stages etc. If it's a good sleep lab you're monitored for movements by an actual sleep tech besides being hooked up to the EEG leads and the chest strap and leg lead to tell if you have Restless Legs. From what you describe, because you have a traumatic background of abuse, you're labeled right off the bat instead of treating your case as a complex, complicated one. You need to see a psychiatrist who specializes in Post-Traumatic Stress Disorder and/or Dissociative Disorders and being a Psychiatrist (medical doctor), one who has knowledge of Sleep Disorders and can refer you to a credible Sleep Neurologist. I'm so sorry you've had to experience mental hospitals and doctors who are not helping you. Medicine isn't a one-size fits all (sorry, I'm a retired Clinical Medical Librarian). I have a similar background but my Psychiatrist is a national expert on Dissociative Disorders and PTSD (Joan Turkus, M.D.) and she's the Medical Director (Emeritus) of The Center at PIW (Psychiatric Institute of Washington (DC)). My Sleep Neurologist, Dr. Helene Emsellem is the Medical Director at The Center for Sleep and Wake Disorders in Chevy Chase, MD and they confer with each other. Clearly, you're not getting any answers that are benefitting you. Until you are properly diagnosed, which could be a dual diagnosis, you won't get the appropriate treatment. There are too many flunkie doctors out there who hear mental health issue and they stop listening because they're biased. Here are some web sites for resources if you'd like to look at them but you really need to be examined by qualified physicians who can HELP you. Dealing with benzodiazepenes etc. when you have a high tolerance won't do you any good and weaning off of them is tricky. If you suffer from PTSD or a Dissociative Disorder, then you'll have a high tolerance for the meds you mentioned and they won't work on the sleep problem. I hope you get some help from the new doctor but meanwhile here are some resources:
Insomnia: Only registered and activated users can see links., Click Here To Register...
and under health topics click on I and then Insomnia for one stop shopping on the topic.

Next, Only registered and activated users can see links., Click Here To Register... and click on the Forums to read what others who suffer from Insomnia are saying.

Finally, for info. on sleep studies, etc. go to: Only registered and activated users can see links., Click Here To Register...
which is The Center for Sleep and Wake Disorders.

Sorry this is so long and I'm not aware of what your resources are in Florida. Please let us know what is happening.

Best regards,
Gayle (recovered from a Dissociative Disorder; still have severe Obstructive Sleep Apnea and REM Behavior Sleep Disorder)

[SleepyGirl]

Thank you Gayle for your knowledgeable and thoughtful response to my post. I will ask my doctor today about seeing a Sleep Neurologist if one is even available here in the Stuart area. You live in a city with smart people like Washington D.C., so it might be hard to find one here to help that has the experience and training you described. Really, kuddos to you for such a wonderful reply to my post. I also want to get genetic testing to rule out FFI (Fatal Familial Insomnia), not because I definitely think I have it, but just to rule it out. They say that only one Italian family has that gene and I'm not Italian, but who knows, right? Anything is possible at this point.

On a positive note, I did manage to sleep a good seven hours or so last night and I'm thrilled that I'm up and about this morning. I have not felt this rested in a year!!!

Anyway, will keep you all posted and thanks again.

-Sara

[Beader]

Hi Sara,

Welcome to BT. I've lived for periods of time in Brevard County, & basically the docs just said, "go to Miami if you want serious treatment". I'd urge you to drive the hour into the city if Miami has the docs you need. Sometimes we have to go the extra miles[s] to get the treatment we need in the major medical centers. Good luck.

[SleepyGirl]

My Doctor's Appointment Today

Hi Sher et al,

Well, my office appointment today went okay, I guess. He too suggested that I see a specialist in Miami and even mentioned Cleveland Clinic as an option. He will be calling to see if he can get me in with anybody and I will hear back from his office in a few days about that. I would travel to anywhere in the country if they could fix me or at least give me a proper diagnosis.

He was pretty quick with me overall, but something about him made me feel that he at least acknowledged that there may be others out there who are better able to help with this type of problem than himself, or seeing other shrinks. He listened to me and did not seem to act like he thought I was lying or crazy, which was good.

I hope that at night is another night where I can get some sleep! A nice backrub from my man and other unmentionables really hit the spot last night. Looking forward to trying it again!

Sara

[houghchrst]

Sara 7 hours! That's fantastic, I hope it becomes a habit.

My Neurologist ordered my sleep study but mine was ordered due to migraines and possible sleep apnea.

[SleepyGirl]

Not Having a Good Morning...

Hi all,

Sadly my previous night of a lovely 7 hours did not repeat itself again last night. Eek! I don't know what I did any differently than the night before but I got 0 hours of sleep again last night. :( Very depressed today again about that.

Sara

[rrnewmed]

Hi Sara,

I have chronic insomnia and took sleeping pills for many years. What the doctors often don't tell you, is that sleeping pills should be used temporarily for a very short period of time. Over a long period of time, pills are bad news and can cause all sorts of health problems.

So, I got off the pills (not easy). I tried many natural remedies and found that I had the best luck with changing my sleep hygiene and using behavioral therapy.


Hope this helps!
Reed

[SleepyGirl]

Sleeping Meds...

You're lucky you could get off those. It's pretty tough especially if you take Benzos. I took 7 2 mg tablets last night and still barely slept. I know that's too much medication. Any suggestions?

I have an appointment April 26th at UHealth Sleep Center for Neurology. Hope they can help! My doc here in Stuart was another let-down. He apparently only likes shooting Botox in women's faces and not really dealing with sick people. Again, his staff referred me to a shrink. I am otherwise a very happy person who is planning a wedding in a few months and I would really like to look good and not feel sleepy and refreshed for that!

[archivesgirl]

How did your appt. go at UHealth Sleep Center for Neurology?

Sara,
How did your appointment go? When I read that you took 7 (2mgs) pills of a benzodiazepam, I thought oh no, that's really a high amount. I know what it means not to sleep even with taking high amounts of drugs including Klonopin. I stayed up for 8 days straight once and then crashed and burned. I was so miserable!!! I couldn't understand how I could be so alert at 3 am like it was 10 am. It was alarming.

I also understand about psychiatric hospitalizations, the worst of them and the best (which saved my life). I, too, have an abuse background. I've done Cognitive Behavioral Therapy and it didn't work and it wasn't going to work. I had to work out my abuse background which was pretty extensive and rough. I had a Dissociative Disorder and Posttraumatic Stress Syndrome. Eventually, I got to work with a wonderful psychiatrist who was a traumatologist. She specialized in PTSD and Dissociative Disorders. I didn't have a choice. I wasn't functioning at all or if I was, I was being self-destructive. It's really hard to find the right doctors but all it takes is one good one. At least the (right psychiatrist) is a medical doctor and should work WITH any reputable sleep doctor.

Do you have a diagnosis of Insomnia? You said that your sleep study showed that you didn't enter REM sleep but that the office dismissed it. I hope that the other center that you just had the appt. with was able to get that record.

Perhaps you know about the Sidran Foundation which offers resources for abuse survivors. Here are some links to them specifically and a listing of treatment centers in Florida. There's no reason why a good trauma specialist (psychiatrist, psychologist, psychiatric nurse therapist) won't help medically with your sleep diagnosis and treatment. It could all be linked so instead of looking at one piece of the puzzle that the sleep doctors alone aren't helping, why not look at it comprehensively and think of the insomnia as part of a larger picture? I had incredible anxiety but it was just a symptom of so much more.

I'm sorry if I've overstepped my boundaries here. It's just that I've been there and if any of these suggestions help you from having to travel the decades of misery I did, then that would give you the answers that took me so long to get.

BTW, I hope your wedding planning goes well. At least it's an exciting time for you.

Did you appt. at least go well or did you learn anything that might be useful?

Some links:
Only registered and activated users can see links., Click Here To Register...


Only registered and activated users can see links., Click Here To Register...

Gayle

You're lucky you could get off those. It's pretty tough especially if you take Benzos. I took 7 2 mg tablets last night and still barely slept. I know that's too much medication. Any suggestions?

I have an appointment April 26th at UHealth Sleep Center for Neurology. Hope they can help! My doc here in Stuart was another let-down. He apparently only likes shooting Botox in women's faces and not really dealing with sick people. Again, his staff referred me to a shrink. I am otherwise a very happy person who is planning a wedding in a few months and I would really like to look good and not feel sleepy and refreshed for that!

[joy]

I hope your sleeping troubles get better. Both hubby and I are suppose to have call back to see sleep doctors. I hate wearing the head gear and all and mouth stays so dry now especially with those pesky things in my nostrils that supply oxygen.

[RustyBonz]

Sara,

You poor dear. You can't be judged as crazy or normal because so many missed hours of sleep will make the doctors themselves go gaga. I feel for you. I've had bouts of night afetr night with one or two hours- and man that made the whole day extra hard to do even the easy things.

Sorry to say that I don't have anything more than my best wishes and sympathy to offer you- but you have every bit of that. Goodnight, sweet dreams.....,

[LBL2016]

I am so frustrated! Why are these doctors so quick to push sleep and pain meds on their patients without truly listening and understanding that the root of the problem is INSOMNIA..WE ARE NOT SLEEPING AT NIGHT! If you don¨t sleep at night, then your day is usually wrecked. Times that by 7, 30, 60, 365 days and see what that does to your life! My life has been destroyed from insomnia. I have been put on every sleep med there is, tried all types of homeopathic remedies, nothing works. My circadian rhythm is completely destroyed. My eyes nor brain know that it is night time. My brain never shuts off. I did not start out with depression, the insomnia and its debilitating effects on my life have caused me to slump into darkness...taking synthetic chemicals to sleep is not REAL and Restorative sleep..its chemical sleep which has bad side effects on the body in general. I have been without sleep for 43 years of my life and I am not exaggerating. The doctors are bafffled and my life is completely destroyed!