ask: any suggestions for severe, lifelong insomnia?

Struckblind,

Thanks for taking the time to write about your story. You clearly describe a rather severe sleep disorder.

There are many kinds of sleep disorders, from narcolepsy to sleep apnea, to different kinds of insomina. What you are describing sounds like Idiopathic Insomnia. Was that your diagnosis?

Idiopathic insomnia is often seen in babies or toddlers and may be present at birth. There is no known reason for this disorder. Research has shown that there is no medical reason for it (either physical or mental/psychiatric/emotional), poor sleep habits do not seem to play a part in it, nor does substance abuse, lifestyle choices, a bright room or other environmental factors. It's a pretty rare sleep disorder but I'm wondering is this what you have?

Some experts believe that someone suffering from idiopathic insomnia is born with an over-active wake system or an under-active sleep system and it is not thought to be genetic.

Unlike some other sleep disorders, there is no real 'cure' for idiopathic insomnia. But there are ways to ease the symptoms. I assume you know all these and I don't want to frustrate you with suggestions that you already know, and that don't work for you but I will include them just in case, and for anyone else reading this.

For better sleeping:

A cool dark room
A firm, clean mattress and bedding.
A regular bedtime.
Use your bedroom only for sleep and sex. Don't use it for reading, working or watching TV.
Regular exercise, but not right before bed.
Get up at the same time every day.
Don't over eat.
Don't drink more than one alcoholic drink in the evening.
Don't lie in bed, stressing about not sleeping. If you can't sleep within 30 minutes, get up, move around and use relaxation techniques until tired.
Limit noise or use white noise if that helps.
Avoid naps or take really short ones.
Don't smoke

Relaxation techniques include:
Warm baths, using lavender or other relaxing salts.
Quiet, non-rigorous activity for an hour before bed.
Meditation
Dim lights
Low, quiet music
No work

Please let me know if this has helped you.
Medication may also be necessary, or behavioral or talk therapy.

You mention some months are worse for you. Which months? You may also have Seasonal Affective Disorder.

Insomnia is a terrible condition to live with. I also live with it, my insomnia is chronic (not diopathic insomnia) and it started around the age of 8. I take sleep medication but still battle it many nights of the week (and I am in my late 30s). I suppose it is just something I have learned to live with, but there are many days I will get about 90 minutes of sleep and have to get up and work and care for my children. Like you, sometimes I am almost grateful for missing sleep for 48 hours or so, because I simply fall into an exhausted sleep on the third night. I am very affected by seasons and my insomnia is at it's worst in winter. In summer I can go for 8-10 days of normal (6 hours) sleep before a night with no sleep or 1-2 hours and in winter, I can have literal sleepless nights 3-4 days a week. Like you, I have often said that I literally turn into a different person. Insomnia is a most difficult and lonely condition. Nights and days can all roll into each other in a fog and trying to explain it to someone who sleeps 6 or 8 hours a night is really hard.

Also, what doctor told you that fainting is normal for a 19 year old girl? Fainting is never "normal"! Have you had your blood (sugar) checked? And your blood pressure? Are you taking medication that could cause fainting?

First of all, thank you.
It's a little disheartening to know that it's something that I'll have to adapt to, rather than successfully rid myself of. It really is a lonely thing. On the other hand, it's lovely and inspiring to see that you've been successful at adapting to your own insomnia, and you seem to have a pretty fulfilling life.

Unfortunately, I live in a dorm room, so baths, music, bedtimes are all things I cannot have. My dorm is also where I study and entertain friends, so it's really serving as a very, very small home.

I don't know what my diagnosis was. I'm not sure my mother would remember it either. I was pretty sick as a kid, so I saw the doctor a lot. I was almost always on an antibiotic for either bronchitis or inner ear infections, and they were so revolting that I can still remember how they taste. Contrasted with these, I have not the slightest clue what I was given for the insomnia, only that for a brief period of time, I was being treated for it.

July and August are the worst time for sleep, while January and February are the best. All of the other months are unpredictable.

I'll really have to try some of those suggestions. Its just started dawning on me that what I'm experiencing is not normal. I guess I just assumed that everyone went through this, and it would go away with time, so I never really bothered looking into real ways to help myself through it.

I don't know what the issue is with my doctor. She's a new doctor, not the one I had grown to trust. When I said that I was having trouble sleeping, she offered me anti-depressants, which I refused because I didn't feel comfortable with the idea that she would (or even could) prescribe me a pretty serious medication based upon literally one sentence that I had spoken to her. She never asked me to elaborate. She did check me for hyperthyroidism, but when that came back negative she told me that it was normal for a girl my age to have trouble sleeping.
She said almost the exact same thing when I told her about the fainting.
I don't think it has to do with any medication. I'm on an oral contraceptive and for a little while I was taking Singulair to control my allergies, but it was giving me upper respiratory infections so I stopped.

Struckblind, is this new doctor one that you have to see due to health insurance or to being on the college health plan? What happened to being able to see the doctor that you had grown to trust?

I'm so glad you found Empowher and that Susan was able to help you see that your insomnia is not normal, and that you're right to want some answers and maybe some more appropriate medication.

I'd like to do the same thing for you regarding panic attacks.

I have an anxiety disorder and I've experienced severe panic attacks, and I know how horrible they can be. When you are in the midst of one, you feel certain that it will never stop, and it's worse at night. They are very real, and they affect you both physically and mentally. I imagine it's especially bad when you are fatigued from not being able to sleep.

It certainly would not be overreacting to see a therapist about your panic attacks. Especially since they are bad enough that you ache to self-medicate. You need a therapist who will listen to you and help work through the panic attacks, as well as a doctor who is more interested in both them and in your insomnia and doesn't tell you that it's all completely normal.

Panic attacks and panic disorder are important enough that even the Mayo Clinic has pages about them. They are recognized as a real medical condition:

http://www.mayoclinic.com/health/panic-attacks/DS00338

And here's a great page on anxiety from the American Psychological Association. In fact, in one area it says that "people sometimes see 10 doctors before they are properly diagnosed," and that only one out of 4 get the treatment they need. That's why it's important to learn the symptoms and get some help. Here's this page:

http://www.apa.org/topics/anxietyqanda.html

You're learning something that is a truth in today's society: We have to be our own best advocate when it comes to health care. We have to ask, and push, and sometimes ask and push some more. We have to read, or research, and try to find out more questions to ask about. When we are lucky, we get a good doctor who listens and responds well to our questions, and it's with that doctor that we tend to finally find the answers we're looking for.

I think that to a college student like yourself, especially since you learned early on that it might be better to keep doctors at arms' length, this might be particularly hard. But you are important, and your health is important, and your mental health is important. If you can get some help with either the insomnia or the panic attacks or both, you will be able to take powerful new coping tools out into the world with you when you graduate.

And I'll give you the best response I ever heard to the words "this is normal" -- Just say, "Well, it's not normal for ME."

Thanks both of you, really.
I've been considering getting a second opinion, or going to see a therapist. I haven't self medicated in a long while. I can't even take Tylenol anymore for any reason, in any portion without getting violently sick.

Diane P: My family moves around a lot so we've gone through some doctors. We had one for a long time though. We even traveled about an hour out of our way just to see her. Eventually she left the practice and went to work in a hospital even farther away and my mother decided we couldn't do it anymore. She chose the doctor we have now and I visit her because I'm still covered by mother's insurance.

I've almost completely gotten over the panic attacks I had upon waking, but that's because I've learned how to very carefully control my environment when I sleep.
I do appreciate the advice. It makes me think maybe I can actually go see someone.

Have you ever been diagnosed with sleep apnea?

My daughter (24) had trouble sleeping ever since she was little. Her ENT (Ear-Nose-Throat doctor) determined her issue, a deviated septum, corrected it, and she is now learning how to sleep through the night for the first time in her life. She still has a little trouble, largely because she's not used to recuperative sleep, and will be seeing a Neurologist who will test her for other potential issues.

Perhaps, when you are able to see your doctor, you could ask him/her about sleep apnea and see if you fit the profile.

Just a suggestion.

I'll definitely look into it. Always a possibility. I don't know very much about Sleep Apnea. When I took psych I think they described it as an interruption of normal breathing while asleep that causes the person to awaken suddenly?

Struckblind, that's correct. The most common type of sleep apnea is obstructive. The National Institutes of Health says that means "you are unable to get enough air through your mouth and nose into your lungs. When that happens, the amount of oxygen in your blood may drop. Normal breaths resume with a snort or choking sound. People with sleep apnea often snore loudly. However, not everyone who snores has sleep apnea."

For more info on sleep apnea, you may check out this link.

You many also find these videos helpful:

What Is Sleep Apnea?

What Are Treatments for Sleep Apnea?

What Are Some Sleep Self-Help Tips?

What Sleep Disorders Are Most Common in Women

I'm sorry that you have to have lifelong insomnia.I've had insomnia on and off throughout my life and it started when I was very young. Took Ambien last year for about a month and came off them and tried Zolpiclone recently.The side-effects were absolutely horrible- It made me have tinnitus as well as panic attacks,I felt so much anxiety at night that I can't sleep because of the ringing noises in my mind.[It felt as though someone's gonna get me]Besides I felt my heart beat really hard I could feel it in my stomach I used to be able to sleep after being sleep-deprived for a night and the following night I could sleep for 7 hours,but now it got to the point that even if I could not sleep for 3 days it doesn't guarantee the fatigue adds up enabling me to fall asleep faster at night!!! The tiredness I feel during daytime were "fake".As soon as I laid down my my bed,I immediately felt jittery even if I wasn't thinking of anything. I suffer from Sleep Paralysis too. Makes me even more anxious when I think of the frequent attacks. Right now I'm trying my hardest to fall asleep at night DRUGS-FREE... I hope it works for us insomniacs!