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Hi All
I would be curious to know how many of you suffer from from either dry eyes, dry nose or dry mouth.Those of you with dry nose (i.e. reduced production of mucus to what you normally had) or who have noticed reduction in sense of smell, do you experience smells that aren’t there ?
Those of you with a dry mouth, do you have a constant or excessive thirst ? Have you noticed whether the smell of your urine has changed ?
Regards
Barbara (UK)Hi Barbara.
I have noticed dry eyes in the middle of the night. I also noticed blood-shot eyes during the night when they are dry. I figured it was a ‘vein’ thing, and could be related to CCSVI if I have that. I also think it is related to waking up burning hot and freezing cold, which also probably correlates with something vascular.
MJ
Hi MJ
Thanks for your response, I figure you’re on the right ‘vein’ so to spreak with your bloodshot eyes. I think it’s pressure related. Do you notice dry eyes at all during the day, or is it just a night thing for you ? Do you ever have the dry nose, or dry mouth, have you noticed ?
Regards
Barbara
(UK)Hi Barbara.
The right ‘vein’ – lol! I do sometimes get a dry mouth – I call it ‘cotton mouth’; I just haven’t had it for a while. I think the dry eyes is just a night thing for me. It seems to coincide with severe POTS/dysautonomia during the night (especially if I get up to go the washroom – SEVERE POTS/burning up if stand up during the night coinciding with dry eyes). Hope all of that made sense – I can’t think straight right now. Too much pressure in my head/pain in my neck.
MJ
I get cotton mouth from time to time. I assumed it was a POTS symptom and it comes on quickly & quite intensely (I probably look like a maniac making such an immediate fuss about getting a drink haha). If it proceeds far enough, I faint so it’s a big indicator for me. And yes, I’ve noticed my urine smell has changed. There was also a lot ‘settling’ after urination. I kept getting testing and nothing was ‘abnormal’.
I get dry eyes as well (only sometimes… and much better after starting Diamox), but I sleep with my eyes open and thought it was from that.
I have a very sensitive nose- smells don’t overwhelm me but I often smell things well before others do. And there have been a few times I’ve smelled things that I’m pretty sure aren’t there (IE: the other day my right hand smelled like I’d been peeling onions, except I hadn’t in weeks).
I’m curious about these things because I’ve recently been looking into where and how CSF (Cerebro Spinal Fluid) get’s absorbed back into the system. If we (EDSers with POTS) all have an excess of CSF in the brain area, what’s going wrong that it is not being absorbed at the rate it’s being produced ?
I’ve been reading a research paper showing that some of the outlets, of CSF fluid from the brain area, include the eyes and the nose, yet my eyes and nose are notably dry. I know that when you have dry eyes, dry nose and dry mouth, it can be diagnosed as ‘Sjogrens’ and this I believe is caused by the immune system reaction.
I know Dr Diana has linked immune system problems (Mast Cell Activation) with our condition and, as such, I would like to know if anyone who has had dry eyes, nose or mouth, has noticed any improvement, once they’ve been on the H1 and H2 treatments (Cetirizine and Zantac) for quite a while?
I also wondered whether maybe the pathways, to these outlets, were being restricted by the brain bearing down on them (because of excess fluid above the brain) which might explain why Diamox might make a difference. I would be happy to hear anyone’s experiences or comments on this
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!Dry mouth is not constant for me. I do, however, recall when it has happened not being able to ‘chase it away’ with fluids. I thought it quite strange that it couldn’t be alleviated by copious amounts of fluids (especially water). I’ve also used Gatorade and Pedialyte to hydrate. Again, this is not constant for me and only at times.
Dry nose, again, happens at times and is enough to cause nose bleeds. Not consistently dry (IMO) though.
Dry eyes. YES! During eye exam I was told that I had Dry Eye. I was told that it could be more problematic than its name, dry eye. My examiner told me that she had it and it could be a bit rough at times. I assumed the random and intense (sometimes) stabbing pains in my eyes were from having dry eye? I’ve had petechial hemorrhaging in my eyes before (awhile ago). I, now, notice that sometimes after the stabbing pains, there are visible veins in the whites of my eyes. They don’t have the same appearance of ‘dots’ like the petechial hemorrhaging but are a full and well defined vein(s) lingering at the surface.
Of course, my poor brain cannot even begin to factor this in with everything else. I’ve just sorta ignored this as best I can. I’m certain that the struggle to find a doctor to help me with it (or to help me figure it out) would be too much for me to take on anyway.
Yes, it’s so odd, that it doesn’t matter how much you drink, your mouth is still dry within a short space of time.
As for the eye pain, I get pressure pain at the back of the eye, feels like it’s being pushed forwards, mainly my right eye but have had it in both. I used to wake up with this and it would go as the morning progressed but recently I seem to have been getting it on an evening.
On Saturday evening I had this behind the eye pressure pain and I bent forwards to unplug something and the pain got so bad I had to grab my eye. In fact the pain felt like it was in my eye, similar to the stabbing pain you describe. The next day it was all red, a blood vessel had actually burst, over the white of my eye, it was dense red from the edge of my iris to the inside corner of my eye (and beyond).
I don’t usually bend forwards, as I have Craniocervical instability and have been warned (even with the collar on 24/7) NOT to but the plug needed taking out and I hadn’t the energy to get down on my knees to do it AND get back up again – so I paid the price, er, I won’t do it again though!
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!Did I hear “dry eyes”? OMG. I’ve always had dry eyes, but they became PAINFULLY dry a couple of years ago. The same thing happened to my son, and frankly, I hear about it from almost everyone with EDS. If it comes with a dry mouth, we keep an eye out (ha) for Sjogren’s Syndrome (an autoimmune condition we are prone to).
Histamine and mast cell disorders certainly makes this worse, and Pataday or Zaditor is a huge help. I, too, don’t close my eyes all of the way at night, at always recommended to my patients that they turn off their ceiling fans at night, if that happens (I use a “chillow” if I’m hot at night.) I also use and recommend punctal plugs, Lacriserts helped me for a while (but they are pricey), Restasis, and topical steroid drops when it is very bad. I am on additional treatments now (as you all know, I’m working on bringing you the trials). Most of my symptoms of dysautonomia are GONE, no cog fog, fatigue, G.I. issues, etc, but I still get dry eyes as the day grows long. It’s better, but still there. Only time will tell if that goes away, too. I can hardly WAIT to get you all in on these treatments. Hang in, OK? 🙂 DianaHas anyone found anything that improves the constant thirst ?
Barbara
(UK)Hi Barb, I wonder what meds you are on (and NOT on)! Perhaps one of us could suggest something for you… 🙂
Hi Diana,
I’ve had the constant thirst for years, it started at a time when I took no drugs at all, so I can’t see that it is drug related. Something in my body regulation (dysregulation?!) results in me constantly craving fluids. I don’t need to glug great amounts of water, I just need to be constantly sipping fluids.
Regards
Barbara
(UK)Hi Diana,
I’ve had the constant thirst for years, it started at a time when I took no drugs at all, so I can’t see that it is drug related. Something in my body regulation (dysregulation?!) results in me constantly craving fluids. I don’t need to glug great amounts of water, I just need to be constantly sipping fluids.
Regards
Barbara
(UK)Hi Barb, I hesitated to try to answer this question because I’m not sure!! I don’t have this symptom (I DO have dry eyes, though). I know we’re prone to Sjogren’s, but I also have a feeling that some of us with thick blood may crave water… It’s just a theory (me and theories!). Have you had your blood thickness checked, Hon? 🙂
Hi Diana,
I’ve had the constant thirst for years, it started at a time when I took no drugs at all, so I can’t see that it is drug related. Something in my body regulation (dysregulation?!) results in me constantly craving fluids. I don’t need to glug great amounts of water, I just need to be constantly sipping fluids.
Regards
Barbara
(UK)Hi Barb, I hesitated to try to answer this question because I’m not sure!! I don’t have this symptom (I DO have dry eyes, though). I know we’re prone to Sjogren’s, but I also have a feeling that some of us with thick blood may crave water… It’s just a theory (me and theories!). Have you had your blood thickness checked, Hon? 🙂
Ah, I never thought of that. It does make sense to me though, as I’ve had clotting issues P.E. (plus additional suspected P.E. at a later date) and possibly TIA (unconfirmed). Could “thick blood” be akin to antiphospholipid by any chance ? – remember the fundus I sent you and I also had a blood IgM measurement 2 years ago of 95% of the normal range.
Regards
Barbara
(UK)
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