Hypersomnulence

For years and years and years I have battled to just simply stay awake for 8 hours straight.  My husband thinks I'm a lazy ***, my MIL tells everyone how lazy I am, my kids are disgusted with me because I can't ever do anything with them... I've lost a job because I was caught dozing at my desk too many times.  I was diagnosed with Polycythemia Vera last winter, with no treatments other than some blood letting. My bone marrow is "abnormal" with leukemic, but non-cancerous changes.

I wake up at 5am with my husband and get him off to work and if I don't force myself I can go to bed at 7:30 when he leaves and sleep until 3pm every single day.  I then go back to bed w/him at 9pm and sleep straight through the night.

I have had batteries and batteries of tests, MRI, CAT scans, gallons of blood drawn, I take anti-depressants, (Cymbalta and Zyprexa), I am diabetic for 12 years, take insulin, I don't drink and the only thing that is really odd is that I'm a breath holder.  My husband gets on my constantly to breathe.  Noone can figure out why I do this, medical doctors, psychologists, psychiatrists etc... in fact they think that my PV may be caused by the lack of oxygen I give myself.

I had a sleep study that said I have no incidence of apnea, very light snoring only on my back and nothing more interesting than it takes me well over 5 hours to reach REM sleep.  So the only diagnosis they can give me is Idiopatic (which means we don't know) Hypersomnulence (which means, you're really tired and we don't know why).

I've asked and asked about CFS, Lupus etc and they just look at me like I'm goofy.  I am at my wits end with myself, my family is and I can't hold a job.  I'm ill a LOT - I can get the flu 4 or 5 times a season, I just had a case of Pink Eye with an underlying sinus infection, I had 2 cases of bronchitis and one case of pneumonia this past year and I'm often extremely dizzy and nauseous and I vomit at the drop of a hat, I am constipated a lot with a "breaking of a dam" that ends up in 3 or 4 days of horrible diarrhea.  I can't take supplements because they make me sick to my stomach, I have been unable to tolerate caffeine as I had an accidental overdose of it last fall, and everything that has a scent makes me ill, laundry, bathing, shopping has become torture because of scents in the stores.  I've had a hysterectomy, I'm 42, not incredibly fit because I can just barely propel myself across the room.

I'm going nuts.  I'm going to lose my marriage and kids I fear.  I think I've told you everything there is to know.  Is there anything that you can tell me?  I'm only awake now because my husband is playing a game with my oldest son and the bedroom is being held hostage.  I was asleep on the couch but woke up sweating and sick to my stomach.

HELP

I have no idea what to say other than of course there is something wrong with you and you have to find a doctor who can help.
You need to really talk with your husband and tell him that he is not to call you lazy nor is he to allow his mother to do so.
It is terrible to feel so badly and have no one believe you.
MAybe someone here has some advice for you. I wish you well.

((((((Diabetic1965))))))
I'm so sorry for what you are going through. I have lupus and find I need to sleep every 2 1/2 hours or so to be able to function. I know exactly what you are trying to deal with. If there was nothing wrong with us, we couldn't sleep that much if we tried! I'm really sorry that you are getting so little support from your family. You are dealing with so much, and coping with being that sick is hard when you are suffering from life-altering exhaustion. If you had a diagnosis than everyone would be more understanding, but it sometimes takes years to get a diagnosis. Have you seen any specialists? Rheumatologists? Infectious Disease? Pulmonary? Unfortunately, when you are so sick, it is hard to get to many appointments -- not to mention the cost. I would suggest bypassing general practitioners. If it doesn't instantly fit a mold, most of them will not pursue it (unless your insurance requires a referral, forcing you to see them first). Since it seems to involve your breathing, maybe a pulmonary specialist would be a good place to start? Since you seen to catch a lot of illnesses that are going around, an infectious disease specialist (ID) wouldn't be a bad place to start either. Don't give up! Keep coming here for support. Remind yourself that you are very courageous and strong -- because that's what it takes for us to get through each day. You are ill, you just don't have your diagnosis yet. We're here for you!

I was wondering how someone finds a diagnostician. Does anyone know? Maybe at a specialty hospital like Johns Hopkins or NIH? I wonder if you could get an appt at a place like that. Maybe you should try a rheumatologist. It could be autoimmune.

Try not to compare yourself to anyone else's. I know it's hard when our society is so geared to what you do and how productive you are. I spend a lot of time crying over this myself. You just have to know you are doing what YOU can -- and not overextending yourself either, as that will only make things worse. It sounds like your husband might be catching on. It's hard to be chronically ill. Most people don't have a frame of reference for it. They just expect you to get better, as we expect ourselves to get better, at least for the first 5 years or so! LOL. Let him know how much you appreciate any support and help he gives you, and take it one day at a time. There is a good book (I got it at the library) called 'A Delicate Balance: Living with Chronic Illness' (or something like that) by Cheri Register. She talks about trying to cope with being ill, and also the struggles people face when they don't have a diagnosis. You might find that to be helpful (as would your husband) -- I did.

Hang in there! Hugs!

Hi Diabetic1965

You are not alone.

All the above for me too. Thanks for putting it out there. This is a lonely place
to be on the train track, unable to cope with life, and no one else is on the track.

The track with the red bone marrow train coming right for you and only you.

I am learning, it is just a me thing.

My wife's head can pop off from me being like this but it won't change the facts.

I would look for other lines of support and establish boundries with
the family there.

I hope you are taking SSRI or something to deal with your depression.

Also, Adderrall helps people with PV gain back some energy.

Medication for attention and concentration issues.

I will keep checking back.

I had my second sleep study last night.

Those are so creepy.

Have you checked you heart?

WHen I told my doctor I was tired all the time he said lets look at sleep apnea and your heart.

I had a significant blockage so they put a stint in .

The dentist chair hurt more than this proceedure.

If you heart has to work hard for whatever reason you are are going to be draggin ass.

Mine was less draggy after the surgery.

Peace