Archived Messages
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Archived Messages prior to September 2004
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Just diagnosed with Pigment Dispersion Syndrome
Jean Cantu, 56, USA (Northern Virginia). Dec 16, 06 - 12:49 AM
I was diagnosed two days ago during a routine eye check up with PDS--a bit of a surprise!! But I must say that my eyes haven't felt quite right in a long time, due to blepharitis and dry eyes, so there is always a gritty feeling. Also, it's very hard for me to cry. I am wondering now if there is any correlation between these things and developing PDS. Also, is it possible I have had PDS all along? If so, why is it only caught when I'm 56? According to what I've read online, this is highly genetic. My mother was just diagnosed with glaucoma and apparently her brother had it, too. Should I get my daughters tested also? They are 24 and 20. Any advice from those with PDS will be greatly appreciated.
- Dave, UK. Dec 18th, 2006 - 11:30 AM
Hi there and welcome to the message board. Lets see what you make of my thoughts. PDS doesn't appear to effect the lids, lashes or tear system so the symptoms you mention are incidental. PDS is not something you're born with, although you can get it in your teens. It most likely developes in the early twenties, although will be very hard to spot until later on. Most people present with the condition in their 30s or 40s (later in women). This is when the more obvious signs (such as Krukenberg Spindle, Iris holes etc appear). With very careful examination it is found in about 3% of people. As for the genetic link, things get a bit tricky. Up to the 1980's no-one was sure but more recently thinking has changed. McDermott et al1 examined relatives of 21 affected individuals, and found involvement in 36% of parents and 50% of siblings, but none in children under the age of 21 years. Others have since described families with PDS. None of the studeis have had a chance to look at children when they come of age but it looks prety clear they'd have an increased chance of the condition. It might not show up until they're older though. Regular eye examinations are never a bad idea, but that's with my optometrist hat on rather than my PDS patient hat! Hope this helps but if you have any further questions, just post.
- Jean Cantu, 56, USA. Dec 18th, 2006 - 5:21 PM
Dear Dave: Thank you so much for your very helpful comments. I will get my daughters checked, just to be on the safe side. I will be getting more extensive tests in a few weeks, but in the meantime I do have some additional questions. I work in a publishing firm and am at the computer most of the day. Should I put some type of screen in front of my computer? If so, what should I ask for? What about wearing a visor? Do you think I should keep off the fluorescent lights in my office and just use a few regular lamps? I am already starting to wear sunglasses when I'm outside and I will cut back on night driving. Anything else I should do? Thanks again!!
- Dave, 24, UK. Jan 4th, 2007 - 11:07 AM
Now I'm afraid you've lost me. Are you referring to PDS when you are asking about the screen filters, visor and lighting or about the lid problems and griity eyes? I ask becuase I can't think of (and nor has anyone else suggested) a reason why these things would effect PDS. Screen filters are useful when tailored to specific problems, such as polarised filters for reflected glare or mesh filters for privacy but beyond that there is no reason why people should be using them as a matter of course. The same could be said of lighting. We all need good lighting, more as we get older (a common figure quoted is a 60yr old needs 3x as much light as a 20yr old) but again it's relevence to PDS is questionable. Although lighting levels have an effect on pupil size, and pupil size can have an effect on iris shape, no-one has reported this effecting pigment loss. Pigment loss and iris bowing (risk factors for progression of PDS) have been linked to accomodation (bringing near objects into focus) and certain types of exercise but not to any office based activities. I'm not really sure if I've answered your question. Apologies if I haven't. If you'd like to clarify things for me, I'll take another shot at it!
- Jean Cantu, 56, USA. Jan 27th, 2007 - 3:58 PM
Dear Dave: Thanks for your reply, which I just saw, as I haven't been on the board in a while. I was asking about PDS. The main accommodations I have made so far are wearing sunglasses when I'm outdoors in bright light, and not driving at night. I don't get my eye tests until the end of February. In the meantime, I have recommended to my brother that he get his eye pressure tested--he said he only goes for a check up every 2 years!
- Dave, UK. Jan 29th, 2007 - 11:55 AM
I'm not sure that avoiding night driving will bring you any benefits regarding PDS but you must do what you feel comfortable, or have been advised to do by your eyecare professional. Wearing UV blocking sunglasses is always a good idea in bright sunlight, regardless of whether PDS is present or not. So good for you on that one. And it is a good idea for family members to be checked out. There is genetic basis for PDS and as such screening should be carried out. But at his next routine sight test should be fine, as long as he is not having problems in the meantime.
Questions
Louisa, 36, UK. Jan 27, 07 - 10:55 PM
I have recently been diagnosed with PDS and have been given Travaprost eye drops. In the last week or so, the skin around my eyes has become really discoloured, rather like panda eyes! Is this a normal side effect, if so is it permanent? Also I am terrified of losing my sight, and I can't get any of my doctors to commit to estimating the risk of this happening. Has anyone else been told the stats of the likelihood of this?
- Dave, UK. Jan 29th, 2007 - 12:31 PM
Ok two questions: 1. What you are describing is a fairly common complaint in women over the age of 30. This is normally cuased by low grade allergic response (have you experienced any itching) or pregnancy (change of hormone levels). However it has been described as a side effect of prostaglandin analogues (the class of drug Travoprost belongs to) as a result of hormone change. So we can't be sure as to whether it is as a result of the drug. Management of this change is washing of eye area and cool compresses and management of allergy if present. As to whether it is permenant, difficult to say. Most people are on their eye drops for many years which makes it hard to tell. If it's incidental (not to do with the medication), odds are pretty good that you'll notice improvement. Sorry, that isn't very helpful. 2. And to continue to be unhelpful I can't really give you a number on the risk of sight loss. You need to have a vast amount of information about someones condition and even then no-one can be that sure. What I can say is that it is very rare for someone with pigmentary glaucoma (that's the type of glaucoma that developes from PDS) to be registered blind or partially sighted. I really don't think you need to worry about losing your sight. And if you take use your eye drops and attend all your appointments it's very likely you will never notice any visual loss. Again I'm sorry I can't be more helpful.
- Louisa, 36, UK. Jan 29th, 2007 - 9:13 PM
Thanks for taking the time to respond to my questions - much appreciated!
PDS and meds
Jean Cantu, 56, USA. Jan 28, 07 - 1:35 PM
MY ENT doctor just prescribed a steriodal nasal spray (Nasonex) for severe congestion. But the paperwork with it has a warning that it can increase eye pressure. Are there other medicines out there that we should use with caution because they are known to increase ocular pressure?
- Dave, UK. Jan 29th, 2007 - 12:02 PM
Steroids are the main ones to think about. Also there is a HIV drug called ganciclovir which can raise intra-ocular pressure(IOP). A lot more drugs can cause pupil dilation or spasms of accomodation both of which can have a slight effect on IOP or pigment shedding. However these are likely to be very minor. That's about it off the top of my head...
- Jean Cantu, 56, USA. Jan 29th, 2007 - 10:49 PM
Thank you for your helpful reply. I heard back from my eye doctor, who said that using nasonex wouldn't affect my IOP. Hurray!
PDS
Robyn, 45, USA. Feb 5, 07 - 1:58 AM
HI, I'm 45.I was diagnosed with PDS 10 yrs ago..I was reading that you should advoid excessive exercise or sports,would snow skiing be in that catagory? anyway, I'm just a little under lately...seem to be seeing less than I was a year ago...just had yag laser surgery to remove scar tissue that came on both eyes after catarac surgery last year..this is something I thought happened as you got old(really old)anyway,any info would be helpful ...Godbless
- Dave, UK. Feb 5th, 2007 - 1:39 PM
Hmmm, I don't think anyone has looked at Skiing in particular. So lets think about exercise in general. Some PDS patients may develop Intra-Ocular Pressure rises after shedding pigment with exercise (it is this lost iris pigment that can block the drainage angle). The majority of patients do not appear to be affected. This is most commonly associated with jogging or bouncing, such as dancing or playing basketball. However, bicycle exercise increased the iris concavity (something that can induce pigment shedding through contact with the lens) by ultrasound biomicroscopy both in normals and in eyes with PDS. Vibration-induced increased trabecular pigmentation has also been reported in rock drillers. Thus it appears to be uncommon and generally associated with regular impact sports. I've never been skiing but had thought that this was not a feature of the sport. About the cataract surgery, I'm not 100% sure if you're questioning the the catarat surgery of the laser treatment you required more recently. Cataracts are associated with increasing age but can be problematic at any age and Posterior Capsular Opacification (the scarring you mention) occurs in a majority of post-cataract patients within 5yrs. I'm sorry to hear you don't think your vision is as god as it was. Most people see a large improvement after the laser procedure. I hope you will find it a benefit soon. David
- Robyn, 45, USA. Feb 8th, 2007 - 1:51 AM
Thanks! for the info....I'm just worried...I now need eye glasses with bifol...I thought after catarac surgery I would see better also..not the case... anyway,I would like all the info I can get...it's my piece of mind..
- Dave, UK. Feb 8th, 2007 - 11:42 AM
It was no trouble.
Eyeball pain
Patti, 46, USA. Oct 2, 06 - 12:12 PM
I have PDS with normal eye pressure. I have had bouts of severe to moderate eyeball pain for quite sometime. The pain can be quite bad at times. Is anyone experiencing pain and if so what has your doctor done for you? My doctor has offered no solution for me.
- Dave, 24, UK. Oct 5th, 2006 - 2:48 PM
PDS is not associated with eye pain. Nor is Pigmentary Glaucoma. Thus there is almost certainly another cause for your discomfort. With some more details it might be possible to take a guess at the source of your symptoms, but the best course of action is for you to approach your eyecare practioner and reiterate that your having these problems. They are the best placed to get to the bottom of this. Dave
- Marie, 46, USA. Dec 12th, 2006 - 4:17 AM
Hello, I was diagnosed with PDS about a couple of months ago. I was prescrbed eye drops because my pressure went up from 19 to 23 in both eyes. During my Dr. visit (before using the eyedrops) I complained of a stabbing throbbing type of eyeball pain behind my eye. The Dr. told me it was probably an eyelash-I know what an eyelash feels like and this was no eyelash. He dismiissed my eyeball pain as having nothing to do with PDS; however, since starting the drops I have had none of this pain. Coincidence I guess? Who knows...
- Tracy, 41 , UK. Dec 12th, 2006 - 8:06 AM
I used to get pain behind the right eye in particular... when I asked the eye doctor about it, he told me it was sinus problems! The pain went after starting the eye drops he prescribed.
- Jonathan, 31, England. Jan 16th, 2007 - 5:09 PM
I tend to agree that PDS is linked to pain behind the eyes. I never used to get head aches but in the last year i started taking head ache tablets for the first time in my life. Today i was diagnosed with PDS, my eye pressures were 25 and 39 (thats not a mistake) and now one week later after the drops they have reduced to a still high but acceptable 17 and 22. Luckily my Opthamologist asked the consultant for his input before i was sent home as a Glaucoma patient and he found the PDS...! Still i guess the treatment is nearly the same. It seems that the real constant in all the PDS sufferers is being short sighted, age seems to vary wildly. My dad went for an eye test and he's all clear - go figure... There are worse things in life than putting in eye drops twice a day, but i think i'll be keeping the snowboard :¬)
- Dave, 24, UK. Jan 17th, 2007 - 12:37 PM
Interesting that so many of you report the same symptoms that clear up after starting eye drops. Four ways the drops could have done this that would be common between you all. 1. Coincidence which is possible. Especially as your only likely to reply if you have had a similar experience. 2. Placebo. Belief that a medication will ease a symptom can trigger te body to cope with the symptom better. Belief that the pain was linked to pressure would enhance this effect. 3. Pain related to pressure. This does seem unlikely. Progressive Open Angle Glaucoma is top three as a world wide cause of blindness. As a result, it is very heavily studied. No suggestion that pain is linked to it. Closed Angle Glaucoma can be linked with eye pain. But this is a pain that you can't ignore. People have teeth and appendix removals every yr as casualty departments struggle to manage sufferers. Now PDS and Pigmentary Glaucoma could be different. Neither are as well studied as they could be. But it would have to be an entirely different mechanism that no-one has thought of. 4. Pain related to tear film problems. As the drops are put onto the front surface and remain there for a period, this is site that needs considering. Deficency of different parts of tear film can cause a variety of symptoms including, grumbling discomfort, burning, or sharp stabing pain. Additonal fluid, i.e. the drop could manage these symptoms. The last option would be my guess. But that's not to the exclusion of the others. P.S. It's important that people don't believe that PDS & Pigmentary Glaucoma is purely a disease of the short-sighted. Every family member should get checked As I have said before: It is more common in people who are short-sighted but half the of cases are not short-sighted. Also, short-sighted people are at no higher risk of conversion from PDS to Pigmentary Glaucoma. The average age at diagnosis is around 40 but the range (i.e. the oldest and youngest) is very wide. For example, it had been reported in children as young as nine. Women tend to be diagnosed with PDS about ten yrs older than men. McDermott et al1 examined relatives of 21 affected individuals, and found involvement in 36% of parents and 50% of siblings, but none in children under the age of 21 years. Others have since described families with PDS. None of the studeis have had a chance to look at children when they come of age but it looks prety clear they'd have an increased chance of the condition. It might not show up until they're older though. If you're got this far, thanks for sticking with me!
- Helen, 44, Wales. Jan 18th, 2007 - 7:07 PM
I'm sorry you're in pain but glad that I'm not alone. The pain behind my eyes normally comes at night - when I'm sleeping and is bad enough to wake me up. The pain is deep behind the eye which coincidently has the heaviest pigment deposits. Like many of you when I mention this in clinic I'm told that PDS is not painful and its dismissed. It's at its worst the night after I've spent long periods on the pc in artificial light. Eye pressures vary during the day and I wonder if mine peak at night and that's what causes the pain.
- Carson. Jan 24th, 2007 - 12:28 PM
As a kid I used to get severe pain in and around my right eyeball - My glaucoma specialist is now under the belief that this was caused by acute angle closure glaucoma, although this was never picked up by my optician and put down to cluster migraines by my GP. Major point would be go get em tested! And the drops aren't bad, they've given me great eyelashes :)
- Ken Jeffers, 38, USA. Feb 9th, 2007 - 8:50 AM
To all: I agree 100% with Dave's reply above about causes of eye pain in relation to PDS. If you're pressure gets high enough, you can feel pain. In most cases patients can not feel eye pain related to pressure until it exceeds approximately 40mmHg. This number is a rule of thumb, not set in stone. I've seen patients with a pressure of 60 who reported no pain at all!! So, if you have PDS and have experienced pain in or around the eye with normal eye pressure measurements (several needed by the way, not just one) I believe you that you have pain, but it's not related to PDS. PDS, by itself, is painless. Like Dave, I think that pain relief from eyedrops in this case are related any of the following: 1. Placebo effect 2. Lubricating effect from the drop itself (yes, dry eyes can hurt). Try a trial of frequent artificial tear use to see if you get the same effect. 3. You're pressure may be up at some points in the day and hasn't been measured as such. This is why we used to do "diurnal intraocular pressure measurements". These are multiple measurements done hourly or more throughout the day! Yes, patients would have an all day appointment! I cannot think of any other possiblility. I hope this input helps. Ken Jeffers, O.D.
Flickering eye lid
Anna, 45, New Zealand. Mar 5, 06 - 4:46 AM
Does anyone know if the twitching of an eye lid has anything to do with PDS. It is in my family, and I am waiting to have tests done. My right eye lid has started twitching over the past few months,and can move down almost half closed, and the eye gets red and sometimes sore. Thank you.
- Marie, 46, USA. Dec 12th, 2006 - 4:34 AM
I had a flickering eye lid before I was diagnosed with PDS and was told by my eye Dr. that this was due to fatigue and stress. I noticed it would get worse when I was very busy at work. I am a CPA and the time from Jan-April would reek havoc on the eye lid. Hope this helps
- Ken Jeffers, 38, USA. Feb 9th, 2007 - 8:57 AM
Anna, Marie is right. Eyelid twitching, or "eyelid myokymia" as it is known medically is not related to PDS. My only concern is that you're eye gets red and sore at the same time? You need an eye exam to determine the cause of this. There are conditions that can cause it. As a rule, eyelid twitching by itself is harmless and usually caused by one or more of the following: 1. Stress 2. Fatigue 3. Caffeine excess or withdrawl 4. Nicotine excess or withdrawl 5. Any other stimulant drug Hope that helps! Ken Jeffers, O.D.
PDS Medical Paper
Colin, 43, UK. Feb 10, 07 - 7:26 AM
http://www.iovs.org/cgi/content/abstract/27/3/387 I have just been diagnosed with PDS. I have also found an acticle on "the mechanism of human pigmentary glaucoma". If you read it, it suggest that glaucoma is not fully attributed to the presence of pigment particles. It is an interesting read.
- Dave, 24, UK. Feb 10th, 2007 - 9:38 PM
Forgive me but that's not how I understand their work. The animal study you refer to is part of a long established lab program looking at a variety of diferent glaucomas. With regards Pigmentary Glaucoma in particlular, what they note that is that the mechanical obstruction of the trabecular meshwork is not sufficent to account for a sustained increase in Intra-Ocular Pressure in all cases. What they suggest is that their is an inflamatory response to this pigment, which damages the trabecular meshwork's outflow facility. Thus pigment presence is still very much the cause of any IOP increase. This is work in it's very early stages. Thus we shouldn't be too rash to jump to conclusions. But it is interesting for several reasons, not least because a great number of people with Pigmentary Dispersion Syndrome never go on to develope PG. This, along with other factors might go some way to explaining why.
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