Hospital experiences

Hi all,

After a very interesting and scary experience at hospital this week, I felt I would share the story and see if others have also had similar experiences.

Im fairly sure, although not positive, that people with fibro/CFS often experience insomnia or difficulty sleeping. So this has been an on- going battle for me for years. I often attributed my insomnia to my high stress job, and had been taking a sleeping aid (zopplicone) for at least a year or so. This past week, starting on Sunday I was unable to sleep. I might have gotten a total of 3 hours broken up into 30 or so minute spurts throughout my night of tossing and turning. Same thing monday night, and then Tuesday. As i reflect back now, At about 4 on Tuesday I started doing odd things, things I just don’t do on a daily basis. For example, I wrote my grandma a letter expressing my love for her. I had also scoured my old magazines looking for clippings to include in my letter, like a cross word puzzle. This is something I have never done… Then I decided to curl my hair, sort out my medications and sort my mail, etc etc. at about 10pm I realized I was very worked up and should take a sleeping pill to get some rest. I was very frustrated and becoming a bit upset about not being able to fall asleep, so I think I doubled my dose. An hour or so later, I have become even more worked up so now, acting almost out of my bodies basic instinct and biological need for sleep, I took another 2 pills. At this point I was irrational and thinking this would “help” me get to sleep. This had the opposite effect and I would up becoming only what I could describe as “high” off these pills. I wound up taking the entire bottle 30 pills as I was literally out of my own rational mind. As I was meandering around the apartment in this stupor I has a nasty fall, and hit my head. I called to my husband who found me and immediately called the paramedics. I was rushed to hospital and most of this is a blur. What I do remember about the hospital is that, allbeit doing their due diligence I’m sure, I was asked again and again if I attempted suicide. The hospital then had me meet with the psychiatrist, who requested to meet with me in private, without my mom present, and asked me my whole life story. My frustration about this is due to the fact that I was still intoxicated, I was impulsive and impressionable. The prodding about my “mental health” began to make me feel as though maybe I had been suicidal…had I? The next thing I know is that the psychiatrist has recommend that I go into the psych unit for 2 weeks for an “assessment”. I was taken down to the unit had one look around, not the warmest looking environment, and realized this was not where I should be. The psychiatrist then made me sign documents stating I was leaving “against doctors order”… Then he told me to pick up new medications, completely new meds.

This disturbs me that a physician would make such a dramatic change after only speaking with an inebriated patient for a short time. A change in medications for us, as I’m sure you are all aware, can be very difficult. To the point where you are sick from the side effects.

The hospital staff also consistently asking me over and over about my intentions was very frustrating and made me feel disenfranchised. I felt very alone. It was as though what I was saying was falling on deaf ears as they already had made up their mind.

Anyhow, I want to confirm to all, that I was never suicidal… Only sleep deprived. I think now that this was likely psychosis induced by lack of sleep.

I haven’t gotten to the place of needing hospitalization BUT I have had similar reactions to Ambien (I think that’s the same sleeping med as what you were talking about). When I haven’t been able to sleep I to just get more and more anxious that I’ll never be able to sleep. My doctor told me to take Benedryl rather than more Ambien so thankfully I never took too much. However, I have made fudge in my sleep, preformed “surgery” on my hand by cutting it and being fascinated with the muscles and tendons, and when I couldn’t get to sleep, I’ve gone through a great deal of Port. Dangerous stuff. A psychiatrist taught me to hypnotize myself into sleep. I am sure that hospital experience was scarey but you are lucky to be alive. There are many stories of people doing dangerous things on ths drug with no awareness of the consequences. My husband tells me that I become a 2 year old from it if I don’t go to sleep right away.

What a horrible experience for you. I have been so very sleep deprived that I would have done anything just to close my eyes and drift off somwhere so I do understand. We have a gene that keeps us from sleeping. Its a genetic thing not something you do or don't do. However, once you cant sleep your body sure is stressed! Which does not help at all with any illness.

Because we are in such pain, or fatigue or whatever your list is, and they do not wish to share with us what is causing it, then the first thing "they" can do is jump to the conclusion that you are depressed and ready to end it.

Unfortunately, many have. I assume for your own protection, they must come to that conclusion - I don't know I have never been around anyone that wished to end their life, but if they did not and were not successful, rather think they might try to talk someone into thinking it was a mistake? What do you think?

So, they have to ignore your comments and go with the fact that you MIGHT have taken them on purpose.

That is so degrading isn't it? But it was for your own safely.

I know many that take more than one of this and that which are prescribed, praying the next one will help... that is what the drug abuse mess is all about. For many nothing helps.... There must be a better way.

You know what you meant to do and the reasons behind it. You meant to find a way to sleep and hoped more than one would help you. What happened shows you just how strong those little pills are.

Try hard to look at their side of it, if your situation was someone you did not know. That is all we can do.

I hope whatever they have changed you to will work in the right direction and you can get some much needed rest. For me, winter months with all the electricity in the air from the cold fronts and barometric pressure changes, I could not... when I moved to the tropics, that all changed and it is rare that I do not sleep. Perhaps not quality but at least not staring at the ceiling all night.

many hugs ! Hopabout Cheryl

I also suffer from insomnia for years now. I was on Ambien, but now i just take the fibro meds and Lyrica helps me get about 5 hours of sleep about 50%of the time; the other 50% I just toss and turn all night. Hang in there; don't beat yourself up about what the drs. think. Draw on support from your hubby. I'm so sorry that this happened to you. I wish you all the best.

God bless you. When I've been messed up badly concerning sleep loss I write down when and what meds I take. My husband helps me with this. Doing this saves over or under dosing.

I am sorry you had that horrible experience.
I believe you didn’t mean to hurt yourself.
Please follow up with your medical doctor asap.Let him or her know you are having such sleep troubles.I was on
pres sleep drugs years ago and had bad vivid nightmares.Your sleep med should be changed.
It never hurts to admit you need a little help.
There could be an underlying problem.

Yes, my husband,too also helps me with regulating my meds. Since I'm quite new to this, I'm still adjusting to everything.

It is possible as one doctor told me that you can get psychotic from lack of sleep. I went for an entire year of struggling to exist on 4 hour sleep pattern. Needless to say I did end up in the hospital and was treated. I had no problem with the interviews because I was just glad someone was concerned. I had been to my regular doctor complaining about the fatigue and she was useless. I found a fibromyalgia specialist later that eventually wrote her a letter outlining all the symptoms that CLEARLY indicated I had fibromyalgia and he wrote he did not know why she was not treating it. Was she ever apologetic. Yes, lack of sleep can make you psychotic

I am actually glad to read this, to know I am not alone. Same thing happened to me as far as going for so many days without sleep that I was delusional. Yes, Insomnia is the main problem in fibro, and lack of sleep causes the other problems. I didn't take any medicine like you did, but was taken to the hospital, and since I wasn't completely rational, even though I told them I had not slept in 5 days, the Dr. didn't believe me. He said I would be dead if I didn't sleep in a week. He was going to admit me, but I was taken to the "pain control floor", which was just being established that month on the mental health floor. I did not get any "pain control" advice, they just pushed me harder and harder each day to prove to me how much I really could do. I was not allowed out of that place for 3 weeks, until I just started saying what they wanted to hear and acting like they wanted me to act. The Dr. told the head nurse to NOT let me sleep or nap until midnight, because I just had my days and nights mixed up. He thought I was sleeping in the day, and that' why I hadn't slept in 5 "nights". I was so exhausted already, and they just kept pushing me to do things, took me out for activities, I passed out while out and the guy who was with the patients decided I was just asking for attention, so when staff of the bowling alley went to call 911, he stopped them. THREE WEEKS! I thank God you got out of there! I am also glad that you didn't die from such an overdose.

Blessings, Sheila

Oh Sheila that is so horrible to hear, I am so sorry. I get angry, very angry, the more I know about the human brain and how it works and what is working on it, the more angry I get at people who decide what is going on in ours.

In my family there is Alzheimer's - well no one blames her. There is Schizophrenia - after polio after the shot - I guess no one blames him and there is Mental Retardation with the mind of a few years old not an adult - no one blames her either. The Parkinson's victim sure gets the attention and rightly so ! Even the migraine gets more attention for the most part though you can't see it.

But as soon as you start filtering down the Gaba dopamine ladder, people began to say Oh your just depressed, Or Oh you shoud stay less stressed or change your food and diet. I just love the blame. Its the same pathway by the way - we so far have been fortunate enough to just not be able to sleep and hurt all day and are so fatigued we can't function - but we look just fine.

When we sleep we actually have a more active brain and eyes than we do when we are awake. However, our body goes into an hypnotic state. Certain things are supposed to happen in that state.

Gamma-Aminobutyric Acid Receptor, Beta-3; GABRB3 located on Chromosome 15q 12. It acts in a ligand-gated ion chloride channel. This area is also involved in autism along with much of what i wrote above. Oleamide is an amide of the fatty acid oleic acid. This amide is found in the cerebrospinal fluid of sleep deprived cats. Mice that lack Gamma Aminobutryic Acid Receptor Beta 3 function lose the hypnotic response to oleamide. We can't get into that hypnotic state we need to. And, we inherited this gene its not something we did or can undo without extreme measures.

Ambien and drugs of that nature contain Zolpidem. " Once released from a brain cell, it is believed that GABA dampens the electrical activity of neighboring brain cells and that Zolpidem works with GABA to further reduce the possibility of certain brain cells becoming electrically active." If our BETA 3 is not working from genetics then Ambien puts us to sleep using the same pathway.... thus we are in an hypnotic state. When I am asleep I don't know what I am doing either. Hypnotic, not psychotic - in my book!

The sad thing is that most people that treat you, have no idea what is happening, they just write Rx. And treat you like you are less than a valuable human being. I am glad you are all here, we know the difference and we validate you !

Hopabout

RE: Your experience in the hospital was awful. I pray that you can eventually wean yourself off these drugs that make you sleep. I like most of us here....We all have our stories, mine too. And, we can all relate. The insomina is a big problem with our illnesses. And, trust me, not even doctors understand about it, the CFS either. Medication is not always the answer.

I've spent the past 14 mos as (guinea pig) myself experimenting with herbs. I got myself off the Ambien 2 years ago, and before that I was on outdated version of Valium and then Tyneol Pm. All of them made me a zombie. Sometimes, the side effects are actually worse than the medication. Anyway, I couldn't function in normal day-to day living. I lost my job, and then I've been trying to get Disability. And, I've not been successful yet. That's another story. Lol!

I started taking Melatonin at 11 pm and by 1:30 or 2 am I zonk out. I never sleep over 5 hours. But, I feel rested for most of the day, till about 3 pm, and I usually get a short snooze for 30 minutes or so, if I can.

And, I've been on several supplements that have helped me. My weight loss coach introducted me to this company, and after 3 months, I became a Distributor (rep) for them. I cannot say enough great "things," about their products, and their research that they conduct daily to make our lives better and healthier.

I take about 5 of their supplements and they have all helped me, I have more energy now to do more things and have also stamina and more endurance. If anyone would more info about the company I'd be honored to give you my website url.

Now I go and exercise at my local Ymca, water aerobics class twice a week, and sometimes I still have the energy to meet a friend and have lunch out. And, the best thing...I can now to to my grocery store, get everything on my list, and leave and take the products home. Even take them into my home and put them away. Then, I collapse. Before...I couldn't do that, I would go and shop late in the day, and my dear hubbie would stop on his way home from work, pay for the groceries and bring them home and put them away.

I've been taking their Composure Supplement now for 6 mos of so, just one a nite along with the Melatonin and some nights I can even sleep 6 or 7 hours.

Do you have a good primary doctor? If so, I would follow up with him/her and ask for assistance. Hospital doctors don't really know our cases, they only see us in an emergency situation. Your primary knows your and can hopefully make a better judgement call about you. All of these are only my suggestions of course.

I'm am glad you are still here. Please hang in there, make some different changes in your life, it will make a difference for you.

These responses have been so helpful. I have had FMS/CFS for 15 years (at first I wrote tears!) and have recently been diagnosed with Ehlers-Danlos. I didn’t mean to be jflippant in my first response. At the beginning I too went days at a time without sleeping and ended up losing my job. I, too, had what might be called a nervous breakdown and drugs made me worse in some respects. (I did get disability - find a good disability lawyer and be patient. It took me 3 years to get it) with great doctors and chiropractors, and some meds. I know sleep well most of the time. I hope and pray that Bubbles, you find supportive primary care doctors.
I just want to say that for me, I have found relief at various times that will work for a time and I will think I am somehow cured only to go through another long flare and new treatments which may or may not work…please know you and we are not crazy. In fact, our very ability to endure and get our joy when and where we can is a great testimony to our brilliance. I, too, am glad all of you are here.

Hey Teresa and all,

I also found that high dose melatonin has done more for me than any OTC or prescription, and no grogginess the next day. Like you, it takes me until 2 to fall asleep but I didn't think it was due to slow action of the melatonin, I think it's my body's cycle of winding down and relaxing enough to get rid of some of the pain and tension. I have had to be a guinea pig myself for many years for natural medicine because I seem to react to every prescription there is. I am grateful for alternatives like that. Sometimes the side effects of medicines are worse than the symptoms I am treating. I find natural meds to be less toxic, if you study and know how to take it and what not to mix it with, etc.

I just joined a new natural supplements company yesterday. I swore "never again" because every month I get approached with another MLM (multi level marketing) business of natural medicine that swears they have the CURE, and if I choose not to try each person's cure, I lose them as a friend forever, and they tell others that I just want to be sick. However, I can't afford to try each person's cure, and I am not willing to go through a possible reaction with each one, and even if the product did work, I could not afford the price that is so inflated to pay everyone in the upline of a MLM business. I have often found something that works, then went to other sources to find that herb at a less expensive source.

I wrote to a Dr. who is at the head of the company I just joined. I had so much hope this time. He replied that their products would actually harm my mother and I, because they are super nutrition, which in most people would allow their bodies to heal themselves, but in Mom and I, who have lupus, it would stimulate our immune system, which makes auto-immune disease worse, so I won't be using the products after all. Shortest business venture in history. lol. I sure hope that more people with fibro can find natural treatments for their symptoms. Nature has SO much more to offer than modern medicine does, and natural medicine has been around since the beginning of the world, with signs and symptoms and cures of disease being watched and effectively treated for thousands of years. The modern health system only came into being 101 years ago, 1910, and they vowed to expel anyone who mentioned an herb, and call them quacks. The medical society is so very good with acute problems and traumas and surgeries, but prertty useless with chronic problems. Natural alternatives have more to offer chronic problems. Have you tried curcumin yet for pain? It's cheaper then ibuprofen/tylenol etc. and it heals your body and liver instead of hurting it like tylenol/ibuprofen.

Sorry I didn't mean to go on and on.

Kind wishes, Sheila

Teresa Ferenz said:

I've spent the past 14 mos as (guinea pig) myself experimenting with herbs.

I started taking Melatonin at 11 pm and by 1:30 or 2 am I zonk out. I never sleep over 5 hours. But, I feel rested for most of the day, till about 3 pm, and I usually get a short snooze for 30 minutes or so, if I can.

And, I've been on several supplements that have helped me.

I, too, use Meatonin but I still need 5 mg of Ambien. And my self hypnosis. I, also, tried so etching that boosted I my immunity and got so much worse. My primary care doctor was not surprised and to,d me to stay away from anything that boosts immunity. He also thinks that 100 years from now there wil be a better diagnosis and cure! Not much comfort!

Melatonin with B6 is my preference also. I learned from studying to take it at the same time each night. I do mine at 10. It really helps me to keep on a schedule if I don't change the time. I don't wake groggy either so that is good. I prefer the Natural if possible also.

Pardon? What did you mean here? What was it that raised your immunity?

PracticalMystic said:

" I, also, tried so etching "

I meant to say I tried something that boosted my immunity. Sometimes this auto correct makes up words on me! I honestly don’t remember what I took. It was one f the amino acids.

OIC. Well since even sunshine is good for humans, but makes us sick from raising our immunity, I figured out yesterday that maybe I would be sicker if I got the perfectly balanced diet, that would raise my immunity too. If sunshine and balanced diets can make us worse, almost anything can do it.

PracticalMystic said:

I meant to say I tried something that boosted my immunity. Sometimes this auto correct makes up words on me! I honestly don't remember what I took. It was one f the amino acids.

Thank you all for your thoughtfull and heartfelt responses. I have greatly appreciated reading all of your kind words.

I'm so happy to have some people to relate to and who truely know what it's like living with this chronic condition.

BestWishes to all.

I am sorry for your experience and am glad you signed out AMA. Yes, psychiatrist, like all docs, make rash decisions without looking at the whole situation. When I was training to be a physician assistant I was appauled at the doctor on the psych floor. He interviewed patients without even looking at them. By that I mean, he sat with the patient and asked a bunch of questions very quickly while doing the paper work. He never let the patient just talk. it was infuriating.

The sleep med you are on has a definite side effect of doing unusual things without you being fully awake. I know this as it happens to me. Not every time, but when I am very stressed. Also at high doses some people get a "paradoxical reaction" which means the med does the opposite of its intended effect. So you took a high dose and had the opposite of the expected reaction of sleep----excitement. I understand the need for sleep. Perhaps a different sleep med would help.

Maria