Myositis :: Orbital Pseudotumor/ocular
Feb 9, 2015
I am absolutely discouraged, and distraught, with the progression of my disease. I was diagnosed with orbital pseudotumor/myositis in November 2012 at the age of 42. I have been on a high dose steroid since, had several surgeries, have seen physicians at Bascom Palmer in Miami and Mayo Clinic in Rochester. I have been on CellCept, methotrexate, Humira, Enbrel, Remicade, Rituxan, and have just completed 6 months of chemotherapy. I underwent radiation, retro and peribulbar steroid injections as well as steroid infusion. I lost my job and I'm unable to work. I also lost my license to drive, and now receive services through the division of blind services.
I am at a loss for words as to why this disease cannot be controlled, or cured.
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I am 35 old and ten months ago doctor diagnosed pseudotumor cerebri. I have never had visual disturbances, but… My doctor prescribed me Diamox and I have responded very well on this drug. But, few months ago, my headaches started and doctor prescribed me Cataflam. But, Cataflam made me feel more nausea.
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I have rosacea and now have been told I have ocular rosacea. Also have allergies particularly affecting my eyes. Anyone else have this? Use cream on face but eyes are bothersome. Not sure what drops to use . My Dr has prescribed Pataday but they are not covered by insurance so would like to try otc drops if I can find ones that help.
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In my jaw, it can sometimes be painful which seems to trigger neck pain and a headache that covers specifically the right side of my neck, the upper right-middle part of my head, and pressure on the right side of my face behind and under my right eye. My vision then goes blurry/hazy. On a side note, sometimes my jaw on the ride side makes a crackling noise when I open it slowly and focus on the area.
My symptoms started about 4 years ago when I woke up one morning to find that the vision in my right eye was blurred. The symptom would occur at random, day and night. I've seen multiple optometrists, an ophthalmologist, a general physician and a neurologist and no would has found anything wrong as of yet. I have found a few things though. (posting more below as i've run out of characters)
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Each day for the past three days I experienced a little disturbance in the middle of my vision which developed into a jagged zig-zaggy circle that eventually extended outwards and within 30 minutes it had disappeared.
I had something like this a couple of times in the past and the optometrist said "ocular migraine" and there was nothing to do for it but to let it pass and if I was driving just pull over.
So, for the past three days in a row I have gotten one of these all of a sudden. The visual disturbance goes away with 30 minutes, but now I get a headache afterwards. It is not a nauseating, leave work, drop everything type of headache, but it still thumps and on each time it was thumping in a different location on my head. It lasts about 3-4 hours, although last night it was longer. I still have a "heavy head" today but no flashes of light so far.
I have been researching and do you think I may have (rather than a ocular migraine), a classic migraine with aura? That may be stretching it. I am at a loss.
I can't get in to see a doctor for 5 weeks and my ophthalmologist is not available either. My only choice is the ER to hope they have an eye doctor on call. A general doctor won't even touch this here.
Please, I'm getting desperate and scared. What do you think it could be? By the way I forgot to mention , the lights I see are in both eyes, not just one.
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I am a healthy 52 year old man and just had my annual eye exam. The ocular pressure in BOTH my eyes is 19. I know the range is 10-21, but 19 is on the
high side of the range. Should I even be remotely concerned?
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Is anyone else experiencing ocular migraines and how frequently do they occur? My eye doctor wants me to have an MRI and my medical doctor prescribed propranolol.
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A year or so ago it got picked up via an eye test and then in referral to hospital that i have ocular hypertension. And was given some Latanoprost eye drops.
The only reason I went opticians was because of headaches and eyes hurting.
Im due to go back to the consultant in December. For the majority of the time I suffer with headaches, with an almost tired/drained feeling and my eyes are either tight or dry. I put the drops in just because I go to sleep, when i wake up, my eyes are so dry and blinking doesn't help, I do have some moisturizing eyes drops.
I thought there were no symptoms of ocular hypertension? Are the headaches due to the eye issues? i work in an office with a computer, spreadsheets, numbers etc and I struggle most days. My problems usually aren't as bad at home, however it can takes weeks before I have no headaches and then they are back quickly.
I don't know what to do, It stresses me out if works making my condition worse, then I can't stand to be stuck in the office all day and be in pain, then i'm annoyed and unhappy before I go back to work knowing its a vicious circle
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I was diagnosed with ocular rosacea and rosacea type 1 last week and have just started antibiotics. I've never had either before. I have no idea how long it's going to take to improve but I wondered if someone who is further along the track could tell me. Does the ocular difficulty come in bursts and go, or is it persistent until it goes. Also, if it goes do you wear eye makeup (girls?)or are those days over for me?
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I have never really suffered from headaches during my life until now (i'm 29). There is no family history of migraines.
Out of the blue, after a family function 2 years ago, we got home and I noticed the image out of my right eye was 'cloudy'. I wear glasses so immediately thought my glasses were dirty. I got a shock when taking them off to find it was my eye! I was a bit concerned, then 30mins later I had the worst headache in my life. I had to go to bed early. At some points even the sounds of the TV from downstairs were making me feel sick. It was as if every sound and sense in my body had been amplified. I think there might have been a tiny bit of twitching but can't confirm now as memory of it is a little hazy.
I woke up the next day feeling normal again, and put it down to hangover or just a 'bad headache'. I went back to my daily job (work in IT) and didn't think anything of it. The same thing happened again about a month later, this time not a headache as much, more visual symptoms. After 3-4 hours it passed and I was back to normal again.
The frequency of them started changing from one every month, then around Jan 2013 one every two weeks, and since around June 2013 one every 7-10 days.
At this moment in time I am off work due to depression/anxiety (Since Feb 2014) and currently can get them every 2-4 days. Last week I had four in the space of 7 days.
What I experience now: The 'trigger' feeling that I know one is coming is slightly worrying; I can visibly see my pulse (vein shape) pulsing in my right eye's vision to my heartbeat. This goes on for about 15/30mins, then I start to get spots/lines/an 'arc' shape which will sometimes be there and sometimes now. I will also get moments of no vision in that eye 'black spots appearing over the central vision'.
When I read of people with 'ocular' migraines they note these symptoms usually leave after approx 1 hour followed by a blinding headache. My concern is the aura stays with me the entire course of the migraine - approx 6-9 hours. I believe I have 'retinal' migraines. Difference being I ONLY get the aura in my right eye. If I patch the right eye my vision is normal out of my left for the entire 9 hours. Also my head feels incredibly tight and sometimes will get a throbbing pain just above the tear duct on the right side of my noise.
I have had my eyes checked and been told the pressure is fine (no risk of glaucoma). Also my blood pressure is normal/high (bearing in mind I do suffer with anxiety/depression).
I am at my wits end trying to work out what triggers them. I have spent months cutting out caffeine/alcohol. It made no difference. I have also tried limiting my use on computers/phones whilst I am off work. No difference.
The only relief I have found is through exercise. I typically don't do any sort of intense daily exercise, maybe a 20min walk a day and household chores.
2 Weeks ago, I decided to start an exercise regimen. Did jogging/walking for about 45mins-1hr each day. I went approx 10 days without a migraine (usually it's every 2-3 days at the moment). I am wondering what in the exercise is causing this relief? Could it be hormonal or just a stress reliever?
I don't smoke and don't drink much alcohol any more. I do have a bit of a weak neck - maybe this has something to do with it? My main concern above all else is it's not your typical aura, I only get it in one eye.
I have also noted that I have never had a migraine before 1PM and after 10PM (apart from one rare occasion at 4AM when I was having a panic attack in bed). Something is happening between approx 2PM-10PM to trigger it, but I don't know what.
I'm a bit of a hypochondriac at the moment, thinking it's a brain tumour or i'm at risk of stroke. I wanted to get a scan but GP said "if you would have had a brain tumour since 2012 you would know by now" and suggested meds.
Does anybody else here suffer from their 'retinal' migraines, or can offer any support or advice?
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This is just a post to ease some peoples worries as i was very worried when this happened to me. I'm male 23 and i've been having ocular migraine on and off since i was about 15. normally i just got the usual aura in my right eye which went after about an hour and then i just got a long dull headache, not that painful, just making me feel run down and tired. But my most recent migraine was different: had the aura, then the headache, but i was left with a small shimmer across my right eye which would not got away! waited a few days, then went the optician who said there was nothing visibly wrong with my eye. i then went to my gp who told be to go to eye casualty as soon as poss, which scared me a lot! went to eye casualty and was again told there was nothing wrong with my eye and they did not know what it could be but it was too early for a brain scan and they hoped it would go away or i may have to live with it! basically i was fobbed off. this was now a week in and my eye still had this annoying shimmer across it. so i decided to wait another week. after two weeks in it eventually began to fade and now after 3 weeks in my site is back to normal. So if this happens to you, don't worry, it can happen and although it is not the norm for ocular migraines it is obviously some sort of side effect. hope this helps others to ease their worries and not to think the worst all the time like me!
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Recently (sunday) i was very angry which probably caused high blood pressure (though i don't have blood pressure originally but i stress out A LOT). After a while, i started feeling slight pressure in my left eye and it is there since then. There are times when it isn't there that much and others when the feeling is there. Today after about a week...i still have that feeling. What could it be...is it just due to hypertension?
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I am a 62-year-old white male who works a 50-hour-a-week job in public relations, and I have Ocular Myasthenia Gravis. It was diagnosed about 5 months ago when my wife said, whats going on with your eyelids closing? I thought it was sunscreen reaction, but the neurologist did tests and said MG.
I have been taking Mestonin since, and have varied the dosage to find out what works. However, nothing works. The MG comes and goes, and moves from the left eyelid to the right eyelid at a moment's notice. And, I have an ileostomy due to Ulcerative Colitis. I received this lifesaving surgery in 1991, and have never had problems. However, Mestonin causes endless diarrhea, which is bad (really bad!) for a person who wears a pouch of poop on their tummy.
When others face a similar situation wherein Mestonin is not working, what do you do? Do you go straight to Prednisone? I cannot tell any difference in taking Mestonin or not taking it, regardless of the dosage. There are good days, but mostly bad ones.
I do not have double vision or any other weakness symptoms.
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I've been doing a lot of soul searching when it comes to alternative medicine, and I have had a need to, because conventional medicine has not been able to offer me much in terms of glaucoma treatment. Sclerology seems to offer some hope. Are there any other people who have had success in treating glaucoma and other ocular problems with Sclerology?
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About two years ago on Christmas due to high blood pressure I lost little pieces of my right eye it hasn't come back Since then the doctor said it's ocular nerve damage does anybody think surgery or anything will make it come back
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I am 46 and have just started having these strange migraines, the first time I had one a couple of weeks ago , I thought I was having a stroke, saw flashing lights and zigzags and things were distorted like looking through broken glass but only one eye, that lasted about 15 mins then I felt sick and then I had a bad head which lasted a few hours , I went to the opticians who checked my eyes and said they were fine and then went to the GP who didn't even examine me just said these are ocular migraines, I have had two more this week, has anyone else had these or similar.
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Last week I had my first ocular migraine. I was sitting on my phone and noticed a small flashing dot in the center of my vision. It was like when you look at something bright then look away. I thought it was from starring at my phone to long. So I got up, and tried calming down. I tried texting my husband and noticed there were missing letters that I could not see. I also had these blurry lines running across my vision. I called 911 and had a massive panic attack thinking I was having a stroke or going blind. By the time they got to my house they had gone away. I also went outside to get air, and came back inside and that made it 100x worse. My entire peripheral vision was flashing. Anyways they ran blood work, ekg and monitored my heart for two hours. Diagnosed ocular migraine and he told me the first one is always scary and nothing to worry about. ( I see my regular dr tomorrow) Now I am having insane anxiety thinking something is really wrong like I am gonna go blind, have another attack or I have a brain tumor. I am terrified of getting another one of these. I don't even want to leave my house in case it happens and I am alone. Can anyone help alleviate some of this fear for me? I am going mad concentrating on my vision 24.7
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I have had silent migraines 24 years.. and recently had the first ocular one. With no warning, went blind for a few seconds, twice in ten minutes. The doctor confirmed it was not a stroke, ''just ocular migraine''. For most people, if the temporary blindness recurs, does the the time of the blindness usually last longer than a few seconds or for most people, does it stay at a few seconds? I am in my seventies.
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I've had migraines throughout my life. Mine really peeked in my early 40s going through peri menopause they would be 3 days long. Now the painful migraines have gotten so much better and shorter. I also use Imitrex as needed.
I would also get an Ocular Migraine (visual disturbances such a bright zig zag lines, vibrating bright lines in vision) about every 4-5 years. They were checked out the first time and the doc said they were not harmful.
Recently my dog decided to put me on Atenolol to prevent migraines. After 3 days of being on them I started to have the Ocular Migraines every single day now! I've never had that happen. The Atenolol has stopped the painful migraines completely but I don't think I can handle something like an LSD trip every single day. This doesn't seem right. My doc doesn't think it's causing it but suggested I go off of it to see.
Anyone else with Ocular migraines?
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I'm wondering if anyone has this condition if they have found vit b12 injections have helped their symptoms of ocular migraine
I was getting shimmering most mornings when I woke and sometimes going from light to dark or dark to light and occasionally zigzags and even blank bits! Dr said it was probably ocular migraines.
I have just finished my loading dose and they have improved significantly.
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A little history on me: I'm 21/F. I have generalized anxiety, panic disorder, depression, PCOS, TMJ, and IBSD. These are all issues I have been dealing with. Medication list: Prozac (20 mg). Vitamin D (5,000 IU). Vitamin B12 injection (once a month). Iron (324 mg). Birth control. Ativan (.05 as needed).
My vision has changed since the beginning of this year. I now see small, clear halos when looking at bright, solid surfaces (such as the sky, walls, etc). I also see an odd wave, jelly-like substance when looking at similar surfaces. When I squint my eyes, I see a line of 20 small dots. All of the floaters I have mentioned move in an odd way, like they're falling. When I try to focus on them, my eyes make the floaters "jump" back to the top of my vision, only to begin falling again. These always look different (never the same spots or lines) and occur in both eyes. When I am focusing on something, such as the TV, I see random dots in my peripheral vision, but when I look in that direction there is nothing there. Went to the eye doctor, said everything looked fine, I am nearsighted, and any disturbances were ocular migraines. I have had three ocular migraines, where I can very clearly see rainbow lines in my vision. These occur when I have gotten very worked up/anxious and only last a few seconds. The floaters I have previously mentioned occur ALL the time. I can look at the sky at any time during daylight, and see them. Brought these issues up to my general practitioner and said this was nothing to worry about, but keep an eye on it.
When looking down or look around quickly, I feel a visual dizziness and off-balance.
PLEASE, if you have any information on what the possible causes of these disturbances/floaters could be, let me know. My doctors aren't worried, but I 100% am. I'm young, why am I having eye issues? I don't wear contacts and only wear glasses when driving.
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