bellgirl Posted January 23, 2012 Report Share Posted January 23, 2012 I know most of us have irritated dry eyes, but when I am really symptomatic, and my head feels full, stiff neck, rigidity, jaw hurts, and dizziness, I end up having uncontrollable tearing, not crying, just tears literally pouring out of my eyes. I also become more symptomatic when I sing, chew, read to much (straining my eyes). I've talked with my doctor's about this, and nobody has an answer for me. Does anyone else have this problem? Does anyone know what causes this? Thanks, Kim Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 24, 2012 Report Share Posted January 24, 2012 Yes, I get this. Mornings are worse & it also occurs when its cold. It seems to come in waves- it'll be really bad for a few weeks, then let up. I haven't dealt with it in a while... I have to use ketotifen (mast cell stabilizer) eye drops or my eyes will be bright red. Maybe they have helped???Julie Quote Link to comment Share on other sites More sharing options...
jangle Posted January 24, 2012 Report Share Posted January 24, 2012 I get something similar, at night when I lay down I'll notice tears running out the sides of my eyes. It's not that I'm crying, in fact I'm usually near sleeping when I notice it.Maybe something to do with mast cells? Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 24, 2012 Report Share Posted January 24, 2012 Yeah, for me I can be drinking my one cup of morning coffee or running outside- Tears literally pour from my eyes. i am not sad... just a weird symptom. i really think the ketotifen drops help. Maybe try them & see if you get some benefit. If so, might be wonky mast cells?Julie Quote Link to comment Share on other sites More sharing options...
bellgirl Posted January 24, 2012 Author Report Share Posted January 24, 2012 Thanks Julie and Jangle. I use Pataday at times, when all of a sudden my eyes are full of histamine, but it seems unrelated to that. It happens anytime I go from a standing to lying position, lean over or are out in the cold, too. I am constantly dabbing my eyes with a tissue. I kept thinking I had a CSF leak, because of Intracranial Hypertension before my diagnosis of Dyautonomia. The tears are not normal either; they dry to a crust on the tissue, and I am wondering whether I could get them tested for protein and glucose. They are sticky, too. I have never met anyone with this. I've never read anything about it either, and have become somewhat frustrated with it. I will try to get a presciption from one of my doctors for Ketontifin. I've been told that if you get your tears tested, they have to be refrigerated, and have to be done within an hour. I also need to go to the eye doctor, since it has been awhile since I have been (nobody can give me a proper prescription, because of my binocular defect, and poor circulation to my eyes, when I exert myself). I have trifocal and bifocal contacts and still need reading glasses!! Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 24, 2012 Report Share Posted January 24, 2012 Hey Kim-I think that your Pataday is similar enough to a ketotefin drop. I started with that & decided it was too expensive- $50 for a 30 days supply!!! My doc said that Zaditor/ketotifen OTC would do the same thing- it just has to be used twice a day. No biggee for the savings. It's around $7, even cheaper for the generic. I wonder if you were to use it consistently if that would make a difference? That is what seemed to help with mine- although I began taking the drops for chronic red eyes- especially when I am symptomatic. A CSF leak? I guess it could be possible, but the literature seems to suggest that that some trauma or penetration has to occur first- http://www.medscape.com/viewarticle/405620_3 That being said, you could be an exception My tears are very watery. The thicker nature & overflow of yours, combined with the worsening of symptoms with positional changes is GOOD reason for concern. I would definitely consult with a doc. Let us know what you find out. Julie Quote Link to comment Share on other sites More sharing options...
bellgirl Posted January 24, 2012 Author Report Share Posted January 24, 2012 I actually fell off a horse once, so that's why I thought this might be CSF, but right now I am wondering whether it could be related to the nerves in my face around my tear ducts, or related to the allergic reactions I sometimes get for no apparent reason, and after reading all you have written and referred to about Mastocytosis, I'm beginning to get concerned about having this, as well. I had angioedema once, and thought it was a reaction to an antihypertensive med, I have flushing all the time, sometimes I have trouble swallowing, and I have various allergies/ asthma, etc. I also have itching on occasion in different places, hot spots, and various fungal infections, too, that come and go. I have to say that I am used to weird symptoms, as we all are, but I've learned to deal with them pretty well, now, at least knowing that it is all related somehow to the dysautonomia. At least there is a reason for these strange things happening, even though the doctors are stlll learning about it all, as well Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted January 25, 2012 Report Share Posted January 25, 2012 I've had several episodes where my eyes won't stop tearing. Most of the time it is watery and there is a burning/stinging feeling. I often get into fits of yawning with it- where I can't seem to stop yawning. I know it is the dysauto but have really ignored these symptoms. Wonder if I shouldn't look into getting some drops as mentioned earlier. Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 25, 2012 Report Share Posted January 25, 2012 Hey Kim-Sounds like you SHOULD look into a mast cell disorder. I always have reactions to any beta blockers. They are contraindicated for folks with MCAS/MCAD. I learned about it on this site. Getting on the right meds has literally saved my life ...and given me my life back Julie Quote Link to comment Share on other sites More sharing options...
anna Posted January 25, 2012 Report Share Posted January 25, 2012 Hi Kim, has anyone ever mentioned connective tissue disorders to you?! It is quite possible to have a CSF leak if you have anyone of a number of connective tissue disorders. Could you check for glucose, by using urine analysis dip sticks, might that work!! Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 25, 2012 Report Share Posted January 25, 2012 I wondered about that too- with the jaw issues- common in EDS. If you do end up meeting the criteria for these 3 conditions- don't panic. It doesn't mean that you are falling to pieces- just a new label for what you've been living with for years. POTS, MCAD & EDS (III, especially!) are commonly seen together. Some docs (including Dr. Lawrence Afrin) now believe that the POTS and EDS may actually be manifestations of the mast cell disorder itself. When mast cells degranulate they cause increased permeability that could cause many of our symptoms. By treating that, many get good symptom relief.If you want to explore this further, check out this site that explores the connection between the three disorders http://uk.groups.yahoo.com/group/theelephantproject/ Quote Link to comment Share on other sites More sharing options...
bellgirl Posted January 25, 2012 Author Report Share Posted January 25, 2012 Thanks for the help. I don't have hyperflexion or elastic skin, but I do have the high palate and kyphosis, that is prevalent with Eyler's Danlos; as far as I know I don't have Marfan's; thought I might have other autoimmune processes going on, but I was tested for MS, by my neurologist after my diagnosis, and alot of the tests for that are autoimmune related. I was tested for Myasthenia Gravis, because I have some issues with droopy eye lids, and weakness, but that was negative. I did anticholinergic receptor antibody testing done. (That was before I was diagnoses with dysautonomia). I was doing some trouble shooting with my internist, and she was willing to humor me...lol . I'm somewhat concerned with the Mast Cell issue though, because my mom has Chronic Lymphocytic Leukemia, and although my blood work is negative right now, the hereditary factor is there. So much to learn Actually, the bystolic is working very well for my increased heart rate, rigidity, and tremulousness, and the last time I got off of one to try another, I had a major panic attack So I really don't want to do that again!! I've never had one of those to that extent. I'm functioning pretty well with the meds I'm on right now. I just have to pace myself, rest when I can, stay close to home,(driving exacerbates my dizziness); I do go to the YMCA twice a week, walk my dog, and try to keep my activities to one thing a day, and if I become more symptomatic, I stay at home that day. My boys are grown, and I am not working now, so I play it by ear (Ha-ha...excuse the vertigo pun) and hope for the best Thanks, Kim Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 25, 2012 Report Share Posted January 25, 2012 I get this and I have severe all year long allergies. I cant even go outside on days when the pollen is high or I end up in a massive flair. Quote Link to comment Share on other sites More sharing options...
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