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Avatar universal

Dry mouth, dry eyes, headache, tiredness..

Hi all, I seem to have some rare disease, or at least no one here can figure it out, hope you can help me.
I have dry mouth, bad morning breath, dry eyes, dry skin and I always have a headache between the eyes and it hurts when i move the eyes up. Blood analyses show everything fine and after a lot of tests the only proof I have is a Imaging I did to the salivar glands showing that one group is fully stoped (dont know which, i dont have the test with me right now). The problem is that doctors in general seem to think its depression and although its impossible in my case (they would know if they knew me) i submited myself. After one year taking antidepressives it show no improvement. I am also always tired and I can sleep a lot if i let myself, like 16 hours easily. If i smoke, i get extremey sleepy and with a strong headache in the zone of the noze a little up. I also seem to have some bubbles in my mouth that release pus. Hope to hear an answer, thanks
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Avatar universal
First thing you need to do, have a friend or family member observe you sleeping.  If you can video record you sleeping on a webcam or camera with sound that would be even better.  You need to look for having your mouth open during sleep, snoring, whether you stop breathing, gasp for air, or struggle to inhale.  You might have sleep apnea.  If you are not overweight your doctor would likely dismiss it before evaluating it.

It causes you to open your mouth during sleep drying out your gums, your mouth in general, you sinuses, eyes, and ear aches.  If you see a dentist he would likely comment on dry gums and inflamation.  It can cause morning onset migraines, with some people they never really go away.  When you stop breathing your oxygen levels drop (usually) causing vasoconstriction and oxygen deprivation.  Stop smoking, if you have sleep apnea it increases your odds of dying in your sleep.  It induces EXTREME fatigue in some people as they only sleep for 1-5 minutes at a time and wake up feeling like they were hit by freight trains.  Sleeping excessively is not uncommon.  It frequently coexists with heart disease, hyper and hypotension, hormonal imbalances, erectile disfunction, anorgasmia and retarded ejaculation.

I hope this helps
Helpful - 0
Avatar universal
Hi there,

I came across this thread on google and it sounds like you have something very similar to what i have suffered with for last 5 or so years. I initially had this pressure headache which just suddenly started one morning. i wouldn't say it is painful but just like having a tight rubber band across your forehead which never went away. then 6 months later i started becoming extremely tired, where i could sleep for well over 12 hours and not wake up feeling refreshed with my eyes constantly stinging throughout the day. I went to see multiple specialists and have had many tests done with nothing showing up as the cause. It was extremely frustrating. I was prescribed a few years back a small dose amitriptyline which helped both the tiredness and the forehead pressure but never went away completely. This made day to day living bearable, but just recently my old symptoms have returned whilst still being on the amitriptyline so i am kind of back to square one. I was wondering whether the cortisone has been of any help, as i have done quite a bit of reading around the subject in the hope of finding a possible diagnosis myself (as doctors have been next to useless) and was wondering whether it may be something to do with my adrenal gland playing up. I also have a dry mouth and did a test of my temperature when i awake which was consistently below the normal level. Any help would be much appreciated. Owen
Helpful - 0
Avatar universal
Hi there,

I came across this thread on google and it sounds like you have something very similar to what i have suffered with for last 5 or so years. I initially had this pressure headache which just suddenly started one morning. i wouldn't say it is painful but just like having a tight rubber band across your forehead which never went away. then 6 months later i started becoming extremely tired, where i could sleep for well over 12 hours and not wake up feeling refreshed with my eyes constantly stinging throughout the day. I went to see multiple specialists and have had many tests done with nothing showing up as the cause. It was extremely frustrating. I was prescribed a few years back a small dose amitriptyline which helped both the tiredness and the forehead pressure but never went away completely. This made day to day living bearable, but just recently my old symptoms have returned whilst still being on the amitriptyline so i am kind of back to square one. I was wondering whether the cortisone has been of any help, as i have done quite a bit of reading around the subject in the hope of finding a possible diagnosis myself (as doctors have been next to useless) and was wondering whether it may be something to do with my adrenal gland playing up. I also have a dry mouth and did a test of my temperature when i awake which was consistently below the normal level. Any help would be much appreciated. Owen
Helpful - 0
Avatar universal
actually, after reading a bit more about it, i may be on the right track. there is only one problem. i am only taking 5mg hydrocortisone a day at breakfast, but i read that it should be 20mg minimum, divided among various dosages. should i call the doctor, maybe she made a mistake?
Helpful - 0
Avatar universal
I almost forgot, I would like your opinion on something else. I always thought that my headache was a direct consequence of whatever condition I have. However, one of these days I fell asleep with the contact lenses on. I woke up with Rheum, something that had not happened in years (i usually just have one dry stone of it in the corner of each eye), and my headache was MUCH weaker. After some research I found a lot of people complaining about some connection between dry eyes and headache. It seemed like a lot of people supported it because it made sense to them, but there was a lot of anger over the fact that every doctor dismisses this. I would like to hear your opinion on this. Thank you
Helpful - 0
Avatar universal
Hi Dr. Rowena and thank you for your support. I just came from the hospital. the MRI is clean, thankfully. The only thing they found bad was that I have low cortisol. They made all the tests, autoimmune and everything else and can't find a reason for that. They prescribed hydrocortisone to help, but it doesn't explain the symptoms. It might give me a little more energy and help my skin because it helps against dehydration, but that's about it, I think. They scheduled another blood work and consult in 3 months. Still, the doctor said that she had absolutely no idea why, maybe it is genetic. I still think that they are wrong in a few things, I clearly remember having my testosterone low (4) and also adrenaline. It seems that if they are within the limits, even if only barely, they aren't considered a problem. I would like to as your opinion on this but unfortunately I didn't get the test results from them. I will go there in the next days ask for them and if possible I would like another opinion from you guys. Still, it is a step forward, and they seem willing to follow along.
Thank you for your interest
Helpful - 0
Avatar universal
MEDICAL PROFESSIONAL
Hi,
Thank you for your update. How are you? It is good that you have further testing done. This will indeed help us determine the possible cause of your symptoms. Some doctors do not give the working diagnosis without the results of the laboratory tests which is consistent with evidence-based medicine. Hang on and always stay positive. Take care and do keep us posted with your MRI results.  Best regards.
Helpful - 0
Avatar universal
well update, sorry it took so long but this has been a long process. finally a doctor toke some interest and got me in the hospital for some blood tests that are easier to do there. she said there were something wrong with the pituitary but the tests were largely inconclusive. i was interned there for some hardcore blood tests and am waiting to do an MRI. so far it seems the blood tests were also inconclusive, and they are waiting for the MRI to make an opinion, but you know doctors, they don't like to tell stuff sometimes. anyways I am hoping its just some little tumor or autoimmune disease on the pituitary causing secondary hypothyroidism. I'll have the final opinion day 9 of next month, and I'll hopefully bring good news or share the blood test and MRI results.
also some general stuff that has been surfacing, if someone has been in a similar situation: i have generally low hormones, like adrenaline and testosterone (a lousy 4 on this one) etc, but all on the "healthy limit". all low, but all on the limit. also have a slow  heartbeat, from 50 to 65 btm, and a low blood pressure, especially in the morning when I wake up. i have made some basal temperature testings on my own and it seems I am also somewhat "cold" in the morning, 36 degrees or less.  
thank you for anyone who took interest.
Helpful - 0
351246 tn?1379682132
MEDICAL PROFESSIONAL
Hi
Welcome to the forum!
You are right. Just presence of antibodies is not the only diagnostic criteria of Sjogren’s syndrome. It is basically diagnosed by demonstrating presence of dry eyes and dry mouth. Dry eyes are demonstrated by Schirmer's test using Schirmer tear test strips. Dry mouth is demonstrated by radiologic nuclear medicine salivary scans and salivary flow test. A biopsy of salivary-gland tissue is also confirmatory. Please take another opinion from an internal medicine specialist regarding this.
Hope this helps. Please let me know if there is any thing else and do keep me posted. Take care!

Helpful - 0
Avatar universal
DEPENDING ON THE TESTS  THEY TOOK....THIS ALMOST SOUNDS LIKE O2  =OXYGEN DEPRIVASHION......OR BTHE OPPISSTE    CO2 =  TO MUCH CARBON DIOXIDE..I CAN ONLY WONER WHEN YOU SLEEP JUST 6-8 HRS ARE YOU WELL RESTED WITHOUT ANY YAWING DURING THE DAY..AND ABLE TO CONICNTRATE....AND DEPPRESHION   ISINT  OUT OF THE QUESTSHION...THERES ALOT OF DIFFT TYIPES OF DEPPRESHION..
Helpful - 0
Avatar universal
Also, I forgot to mention my first idea was that I have something autoimmune like Sjogren syndrome and then caught a mouth infection due to dry mouth. but the doctors dismissed Sjogren's because i dont have SS-A and SS-B (I think). I have read that those antibodies dont have to exist in all patients, but the doctor just said that "if they are not present, you dont have sjogren's). please let me hear your opinions.
Helpful - 0
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