Couldn't find what you looking for?

TRY OUR SEARCH!

Hello!

I'm trying to find out more information regarding some of my medical problems...

I sleep with my eyes wide open (no, not just partially open) o.O My corneas are fully exposed and I appear awake. I've done this my entire life. Of course, the only way I know is because I'm told (and didn't fully believe it until I was shown photos!). This causes severe dryness, pain, and red eye. I've tried a couple different eye drops/ointments, but didn't get much relief. I worry about the long term effects of my corneas drying out nightly. I had LASIK eye surgery one year ago. That in itself will cause dry eyes. Subsequently, it has worsened my symptoms. I should note, however, that the surgery was successful and I have 20/20 vision now!

I was diagnosed with Temporal-Mandibular Joint Dysfunction (commonly referred to as TMJ) about 4 years ago. I've worn 6 different types of mouth guards. None of them prevent the grinding of my teeth at night, they simply protect my teeth (and ultimately dry my mouth, causing cavities due to lack of saliva!). I'm excessively sleepy and will sleep 15 hours if uninterrupted. Therefore, my doctor order a sleep study...

Oddly enough, I didn't grind my teeth the whole night of the sleep study. However, I know for a fact that I usually do because I'm told by others, sometimes I wake up grinding, catch myself starting to when I get sleepy, and there's wear on my teeth indicative of grinding.

Anyway, the sleep study results showed I only entered REM sleep for approximately 4 minutes. My sleep disorder physician said it was odd but there was nothing he could do about it except prescribe Provigil to keep me more alert during the day. I really worry about the affects of little to no REM sleep on my health. Obviously REM sleep is incredibly important. In studies, rodents deprived of it die! I want to find out more information as to what would cause this and if there's anyway to help the situation. By the way, the maximum dosage of Provigil isn't really making me any less sleepy during the day.

I feel exhausted 24/7. I have zero energy. I'm only 21 years old. I'm a pre-medical student, which drains me even more. I don't want to be a zombie who sleeps half the day away. My back, shoulders, and neck ache nonstop. I get severe incapacitating headaches frequently too. I'm so lethargic and fatigued during the day I cannot partake in exercise or many things normal people do. I'm not trying to have a pity party here, but I'm just so tired!!! :'(

Perhaps I should mention all the medical conditions I have. By chance, they may be inter-related...

1. Inappropriate Sinus Node Tachycardia (heart condition)
2. Irritable Bowel Syndrome (digestive condition)
3. Chronic constipation
4. Ovarian cysts
5. Menorrhagia (heavy periods) & Polymenorrhea (frequent periods)
6. Chondro-Malacia Patellae (knee condition)
7. Ehlers-Danlos Syndrome (connective tissue disorder)
8. Vasculitis (circulation/blood vessel condition)
9. Digital Ischemia (inadequate blood flow to fingers)
10. Raynaud's Phenomenon (vasospastic attacks in extremities)
11. Migraines / Tension headaches
12. Frontal lobe & slight temporal lobe brain damage
13. Idiopathic Hypersomnia (excessive sleepiness)
14. Temporal-Mandibular Joint Dysfunction (teeth grinding)

Any information at all would be much appreciated. I don't wish these problems on anyone, but at the same time I don't want to suffer alone.

E-mail: _[removed]_
or _[removed]_

Thank you...

Sincerely,
Keleigh

Loading...

I just had a sleep study done this past Wednesday night and Thursday night, with a day study of staying awake 2 hours and taking naps for 20 minutes. Out of all of this I am never reaching REM. This scares the hell out of me. I haven't seen the sleep specialist doc yet, however, I read your story and feel almost hopless as you are 20 or 21, (I cant remember what I read,, haha imagine that with no REM sleep) as I am 41 and need all the energy I can muster. There has to be something out there that can help us.
Reply

Loading...


OMG! i sleep with my eyes wide open and i grind my teeth approximately all the time 2
sad though :(
Reply

Loading...

Have you been tested for Lyme disease? All of your symptoms sound like mine, I've had Lyme for 30 years.
Reply

Loading...

Good Afternoon,

I ran across your post last week as I was researching a link on dry eye and r.e.m. sleep, and wanted to see if you have made any progress in your overall wellness since your post about a year ago.

Personally, I would have to assume that our severe dry eye has a significant affect on Rapid EYE Movement and certainly impairs our ability for not only rem sleep but for the other important sleep cycles as well. Fortunately, my eyes aren't wide open like yours while sleeping, however I have still dealt with severe dry eye the past 13 or so years. I have finally come to using punctual plugs to at least increase my TBUT (tear break up time) and produce some much needed relief. I was recently highly recommended PRN's omega 3 dry eye capsules to help decrease inflammation, which hopefully will increase my aqueous deficient dilemma so I can reach greater eye comfort.

However, this email was not intended to specifically discuss dry eye (or your Open eyes as I have no knowledge on), but rather, the non-restorative sleep deprived state that you have dealt with and are likely still experiencing.

I myself have experienced nearly unimaginable negative ramifications from poor sleep quantity and quality over the years. My quality of sleep has been extremely low as I wake up completely exhausted and it has nearly debilitated my functionality as a human being. Fortunately for me, after countless years of Dr. Apts., sleep studies (5), medications, surgery and then years of further research and understanding my sleep disorder; I think I am finally on the brink of achieving a higher quality of sleep and therefore better overall health and wellness.

FYI, I am a 26 year old white male, in shape and to the average person (even the average Dr.), seemingly look healthy and good to go. However, this has been part of the problem as Dr.'s have been so resistant to really hear me and look at the signs I'm pointing to as indications of a greater and more significant problem.

The bottom line is... I am highly convinced that I have UARS (upper airway resistance syndrome) which is basically a type of sleep apnea. However, in the medical community UARS is vastly un- or misdiagnosed due to lack of knowledge and/or due diligence. The concept of UARS is oriented around have a sleep disordered breathing issue which can be just as common among thin/average sized people as they are to obese individuals (which are those most associated as OSA patients).

I have tried cpap, sinus surgery and now a dental device which has finally started to produce some favorable results and improvement in my sleep and overall well-being. I have finally met the right Dr.'s that have noticed a significant obstruction of my upper airways (around the throat and nasal passages, ). I have used that information to realize that I need to create a permanent solution to my sleep breathing disorder and this week I am seeing one of the most renowned UARS Dr.'s in the country, Steven Park, NY .

Dr. Park has recognized that there is a differentiation between the typical Sleep Apnea patient who has off the chart sleep study numbers (which can be treated effectively with a cpap), and other individuals whose sleep study results are normal or not significant, but still suffer greatly from sleep issues and overall health and wellness.

My point is, that since you had a sleep study (even though your rem was extremely low) you didn't report having been prescribed a cpap (which is very typical for sleep dr.s) or noted with a SBD (which many sleep dr.'s don't easily recognize) then you were probably sent away with some pills and the Dr. saying you have no noticeable signs of sleep apnea. But that doesn't mean you don't still have a sleep breathing disorder or possible UARS condition that you've been suffering from all along.

Maybe you have gotten your airways all checked out and you can 100% rule out a SBD, but maybe you haven't considered that option and if not, I advise you to look into it like I have. My life has been ruined by this sleep disorder and I think I am on the cusp of overcoming it, but it has taken my whole life to figure out. So if I can help introduce this piece of knowledge that could lead to a better quality of life for you, then that is the least I can do.

Good luck, and of course if you have any questions, comments or feedback please feel free to respond.

Sincerely,
Andrew
Reply

Loading...

If it's sleep apnea then just go to your GP and request a sleep study, they will send you home with a thingy that attaches onto your finger for the night and it will tell if you if you have any sleep issues/apnea.

 

Don't mean to jump in but sleep studies are simple tests.  Good luck!

Reply

Loading...


Appreciate the post, an at home sleep study like the watchPAT measures basic sleep apnea parameters:

"WatchPAT monitors changes in peripheral arterial tone (PAT) and activity, as well as in blood oxygen saturation levels. It also identifies sleep apnea events just like the equipment used in PSG sleep studies performed in hospital sleep labs."

Unfortunately, I had the watchPAT done by a sleep medicine dentist who had all the proper oral appliances to treat my type of sleep apnea. However, the watchPAT does not account for UARS and even though the Dr. saw structural signs of sleep disordered breathing; he was negligent in the fact that he gave me a TMJ device instead, because he said the watchPAT didn't show OSA so I was not qualified for the appropriate oral appliances.

My argument being... those simple things (like an at home sleep study) are worth a try, but please don't let that discourage you from pursuing a possible sleep disorder even if those tests come back negative.
Reply

Loading...


Of course everyone should pursue a possible diagnosis when you know how you feel and the doctor is only going on the info you tell them and they have (books, knowledge, web, consults with other doctors, etc). I know this all to well, I as well as everyone has to advocate for their own health, I had to get my diagnosis for Celiac disease and now for a heart disorder that my cardio didn't see but an Electrophysiologist is seeing. So always persist!

When posting on places such as these we have such limited knowledge to your own story that just like doctors we assume, so hence the sleep study. But, you taught me something I didn't know about sleep studies. So as humans this is how it is, learning from each other.

Good luck!
Reply

Loading...


I would guess you may have UARS and mast cell activation in addition to EDS. Check out MCAS treatments and also the DNA appliance for reconfiguring your dental arches, jaw position and palate to increase your ability to breathe at night.
Reply

Loading...


You have Lyme disease or some other stealth pathogen (or several), and most in the medical community are going to tell you that you do not or will use the incorrect test and tell you that you are negative. What is going on is a travesty.

I had or have all of the symptoms that you list, from the heart issues to the bruxism (teeth grinding) and TMJD. I was you at your age. And like you, I worked in the medical community. And guess what? I actually worked as a patient advocate on Capitol Hill, trying to get more NIH funding for all of the syndromes that you list (and more). Subsequently, and due to being pointed in the wrong direction perpetually by my profession, I was misdiagnosed for over 35 yrs (at least) and now I am in a real pickle and my pain levels are now horrific. Please don't end up like me. I would not wish this on anyone.

Educate yourself. Med school is the very last place that you are going to find out the truth about the underlying infections that are behind what is going on with you. It took me decades to put together the pieces of this complex puzzle. Please listen to me. Watch Under Our Skin -- it is a 2009 award winning documentary on Lyme and related infections. Lyme is epidemic in the US right now yet little is mentioned about it (there are reasons for this, none of them good). Visit ILADS.org.

I PROMISE YOU: YOU HAVE LYME. PERIOD.

I was just like you to a T!
Reply

Loading...