Dreadful situation and in need of new help

I am new to this forum and have signed up out of sheer desparation so I do apologise for the essay.....

I am a 27 year old female, 5"3 and around 8st11 in weight, usually a size 6 to 8. This may seem relevant later on....

For the last 14 nearly 15 years I have been struggling with severe exhaustion which only seems to be getting worse and I am stuck in a terrible chicken-and-egg situation.

When I was 13 I started to feel tired. My mum, thinking that it might be because I had started my periods took me to the doctors for anaemia tests, these came back negative. Thinking it was me being a teenager nothing more was really done about it until I was 15, again the tiredness continued and various other tests were performed but to no avail. Around about this time I started to get depressed (again put down to one of the gripes of being a teenager).

Around 17/18 I started taking caffiene tablets to feel more awake (pro plus) and visited my doctor about six months later to explain I felt exhausted and could not live without the caffiene tablets. I believe as a result of this I started suffereing with anxiety and panic attacks. This anxiety lasted until I was about 19, I was scared to drink alcohol, smoke or do any recreational drugs as I had developed an obsession about being sick in public. I note that by this point I had been taking the depo provera shot injection as a form of contraception and no longer got periods so the tiredness could not be attributed to loss of blood.

Around that time I visited the doctor again about feeling tired and was tested for all kinds of things, when these came back negative I remember clearly the doctor saying "well some people just get more tired than others" and it was kind of left at that. I was frustrated and felt helpless and did no more about it.

When I met my partner when I was 20, he commented on the amount of caffiene I was taking (20 pro plus a day and around 3 cans of redbull) and noted that I was the only person he knew who could drink a can of redbull and fall asleep immediately afterwards.

When I started staying at his house on a regular basis he noticed that I am a "weird sleeper" something I have known about myself for a long time but never thought of as abnormal. I scream, cry, laugh, talk and do all kinds of weird stuff in my sleep. He said perhaps the reason I was feeling tired was maybe because of that and suggested I spoke to my GP.

Insistant that there was nothing more they could do after feeling like all those years had been waisted I did not go, and continued with my lifestyle as a normal young woman. I would go out at weekends, enjoy drugs recreationally, drink, smoke and take the caffiene during the week.

Anyone would think that perhaps my tiredness was a result of lifestyle, right? Wrong. Because I stopped. I stopped smoking, I stopped partying, I started excerising regularly but felt no better. I would sleep and sleep for 12-13 hours and feel terrible still. My dad would joke that I had narcolepsy as I would always fall asleep when I visited him.

Eventually at 23 I went back to the doctors and explained that the obvious causes of the tiredness (partying, smoking, caffiene etc) had been excluded from my life and that I had this night time activity. She then referred me to a sleep specialist in east grinstead and I've been undergoing tests ever since.

First I had to sleep with a heart monitor at home, this showed that my heart rate fluctuated a lot during the night, they said that something was causing me to become disturbed. They also said this would explain the parasomnias and sleep walking as something is causing me to become disturbed in my deep sleep and my brain is not fully waking up so as a result I am half acting out my dreams in this weird lucid state.

They have put me on various sedating anti depressants (around 3 or 4 different types) but I cannot remember the names of all of them. They also gave me gabapentin for epilepsy in the hope this would do something but nothing, the tablets make me groggy and feel worse afterwards.

They thought initially that I might have had sleep apnea, although I am not overweight my jaw is slightly set back and they thought perhaps this could be a cause. I had to wear a splint to keep my jaw forward which was agony and caused me to feel more tired than I had ever felt before.

They got me in for various sleep studies but the wires and machinerey were suffocating and caused me to stay awake the entire time.

I then was given and oxygen mask thing to wear (a cpap) but this was bad too as I could not drop off to sleep with it on. Frustrated, I returned to them at 26 to say that I was prepared to go for the surgery they had initially offered me which was going to radically change the way I look (breaking and resetting of both jaws, metal pins, braces, loss of nerve feeling) because I was so desparate. 

They did one final sleep test in which I did fall asleep only to find my worst nightmare - nothing wrong.

I cried and cried and cried sitting in that doctors chair. As the years go on I feel more and more overwhelmed with exhaustion. Some days I get in and can do nothing but sit, I feel my limbs throbing with exhaustion. I cannot conerntrate, my brain function is terrible, my memory is shocking and only getting worse. I forget how old I am, what year it is, what day of the week it is. I struggle so much to remember what I am expected to do and focus at work that all of my energy is taken up doing this, I get in from work and can do nothing but sit. I am moody, irritable and generally miserable. I also suffer from nausea and upset stomach frequently which often means I am too ill to do anything so I just lay on the sofa feeling rubbish.

As I get older, I am taking the caffiene still (i had to return to this after a six month break) as life is unbearable. I want to exercise but have no energy to do it, I have no energy to do simple household chores and spend my days looking forward to sleep. I sleep for 13-14 hours easilly during the weekends. The doctors now say I might have "idiopathic hypersomnia" and have prescribed me 400ml modafinil 200ml twice a day. in addition to that I take between 6-10 pro plus just to keep me going.

I work in an office, from 9-6pm, I go to bed around 10.30pm although if I can get into bed at 9pm then great and I get up between 6.55am and 7.15am. I have been given discaplinaries at work due to time off but its simply because I am too tired to go in. I have had accidents in my car as a result of my concerntration. I have been told off for being distracted again all because I am tired.

I have lost friends and argued with family, my partner and I split up briefly with my sleep problem being a large factor.

I feel terrible, I feel worn out. The older I am getting the worse I feel, I have just enough energy to get to work and back then possibly cook dinner. Weekends are a no no, I really wanted to go out this weekend but can't as I need to rest so much for work. 

I no longer use drugs recreationally, I do not exercise, although I would love to I am too tired and worn out. I feel like I have flu. I am trapped because the caffiene I need keeps me awake during the day but could be making me feel sick, I get deeply miserable, is my life going to be like this forever? If I am getting this bad what will I be like in the future? I am too tired to cook and eat properly which makes it worse. I literally live for sleep and at 27 years old I am very very sad. I look at my colleagues who are younger than me who can have weekends out and be fine for work on Monday, I cannot. I do not drink during the week AT ALL as I do not like alcohol and binge drinking is all rationed depending on how tired I am feeling. I havent seen my best friend for weeks as I get in from work and cancel our plans as I feel so sick and tired. 

I get ill frequently, I have good night hygeine and morning rituals to help but nothing ever really takes away from the constant exhaustion. If I get less than six hours sleep a night I am an emotional mess, if I consistently get this (a week or more) I start to lose my mind all together, I start hearing things, seeing things, I think about suicide. I am not me when I am tired, its like I have this devil side that I am constantly trying to keep at bay,

I have to sleep with earplugs in, even though we live in a quiet suburb the drop of a pin will wake me up. I hiccup in the night, I punch my partner in the night. As I write this email I am sporting a black eye as a result of sleep walking into the bed.

I get up CONSTANTLY throughout the night to go to the toilet, I sleepwalk (have done on a few occasions when guests stay and woke up in bed with them) I have been known to do sexual things to my partner in my sleep which really and truthfully as great as that might sound is never appropriate when you are both sleeping.

The constant caffiene does cause paranoia and anxiety and I know this, but I need it, even after cutting it out for a good half a year I felt no better, my sleep did not improve so I figure it doesnt matter.

I get terribly low and depressed because I feel like I have this huge burden that no one understands as its not obvious. People always say "oh yeah I get tired" but they don't know what its like to battle with yourself emotionally every morning to get out of bed. To risk your life driving to work if your concerntration slips just a bit. To struggle to remember things that have been said in meetings and be told off for time off or lack of concerntration. To feel so sick and nauseaous all the time that you can do nothing else but sit. To have aching muscles like the flu. Forget about getting ill, thats a week off work right there. I got sacked from a job I had just started as I became very ill in 2013, I got a chest infection that did not clear despite 3 rounds of antibiotics and inhalers. I was so ill I had to sleep on the sofa as my constant coughing kept my partner up at night, I felt terrible and did not have the physical strength to fight it off. Some days I struggle to string scentences together. I used to be so clever at school and was placed in higher education maths and english as I was so advanced, now my brain is mush. I cannot spell properly, I cannot remember things or do basic problem solving as my brain feels thick and heavy. My eyes sting with tiredness most of the time. I am ALWAYS yawning. It not normal I know, I know my lifestyle hasnt helped but this problem started WAY before any of the adult bits and I gave them up a while ago and still I get worse.

I am so tearful and miserable I get depressed, I do not want to carry on living as my life is becoming more and more restricted. I had to change the flights of a holiday recently as I was too exhausted to get to the airport.

Sometimes I feel so tired I feel drunk, like I could pass out at any moment yet the doctors cannot find out whats wrong, surely it cant be that hard with so many obvious symptoms?

I am due back to sleep centre for one more test for Narcolepsy, they are throwing around the idea of amphetamines as a daily medecation which I do not want, the caffiene is bad enough amphs will be so much worse. What will happen to my heart? Will I be able to have healthy children? Its a nightmare and I am absolutely sick and tired of being sick and tired! 

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