Orthohypo Posted March 21, 2013 Report Share Posted March 21, 2013 Dana, I am OI and when I take pseudoephedrine I feel much better overall. And it's a 12 dose so it lasts! I get the same effect after two doses of sumatriptan for migraines. I was just telling my husband tonight that once the migraine is gone I have more endurance to get through the day and I don't have my daily afternoon crash. Problem is my doc said not to take pseudoephedrine since I am on Midodrine and the max for sumatriptan is 6 per week. The pharmacist said if I needed a pseudoephedrine once in a while it wouldn't be a problem with the meds I'm on. The Midodrine at 10 mg TID just isn't helping much. I need to find out how sumatriptan works compared to other vasoconstrictors. Or maybe it's just adding it to the other meds that helps. Anyone have an idea about this? Quote Link to comment Share on other sites More sharing options...
Orthohypo Posted March 21, 2013 Report Share Posted March 21, 2013 *Meant to say 12 hour dose. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 21, 2013 Report Share Posted March 21, 2013 Most of those the migraine vasoconstrictors work by activating serotonin receptors. Ergotaimine and dehydroergotamine work in a similar way and are ruotinely prescribed for OI in australia. Quote Link to comment Share on other sites More sharing options...
Angela Posted March 21, 2013 Report Share Posted March 21, 2013 hey dana, it wasn't my recent worst flare but I think I have what you describe in a sense, like a blob in your eye and it only affected one eye at a time too. I actually had to drive to work covering one eye so I could visualize things almost correctly, that's why they suspected a vein clot in my neck?. came back negative tho plus i have perfect vision.? that symptom went away when my flare subsided and second bad flare seems to be streaks of color or floaters, mostlytho. in the dark, occassional flashing lights thru both major flares Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 21, 2013 Report Share Posted March 21, 2013 Floaters **** Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 21, 2013 Author Report Share Posted March 21, 2013 Angela,From what my doctor told me they have to know to look for this in order to be diagnosed with it. It's not on most doctors radars at all and since your regular exam tests will look normal, they won't know to pursue it further. You have to get an infrared scan of the eye. That's what I am waiting for now, but that won't be for a few months as we see what happens. I'm to call if more show up. The first retina specialist told me he saw a white dot on my retina at that time and I thought that perhaps I had a white dot syndrome. However my scotoma should have gone away by now if it were one of those. The new retina specialist told me she saw nothing on my exam at all, but I sent over the photographs from the first doc so she could see what the first doctor saw. All I really know is that I have small scotomas in my eyes that are annoying, but in the long scheme of things won't interfere with reading writing or anything like that. It's just frustrating not knowing what is going on. It's also scary thinking I could wake up tomorrow with more spots.... I have had flashing lights, floaters and get weird flashes and lines get stuck in my vision for years. I started seeing eye doctors in 2009 because I had blue lightning steaks in my left eye.I've had the one larger spot in my left eye since October. I literally went to bed fine and woke up with it. It has never gone away. I now have two other small spots in my left eye and several smaller spots in my right. I made this image for someone else to show the vision loss I have. It is very small on its own and it isn't black blobs or lines, but rather just the vision isn't there. My brain fills in the missing vision with details around it, so honestly I don't even know I'm missing vision until I look more closely at a straight line, pattern or notice the color is off in the blind spots. I don't have blurry vision or things like that. My vision is bad in my eyes, but it can be corrected to 20/20.http://i16.photobucket.com/albums/b46/danab1984/3-13-2013_zpsf65e7e98.jpg Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 21, 2013 Report Share Posted March 21, 2013 I had a random retinal hemmorage and a minor blind spot. Mestinon did wonders for all my vision and eye ball symptoms other than floaters. Quote Link to comment Share on other sites More sharing options...
Angela Posted March 22, 2013 Report Share Posted March 22, 2013 dana, i had green and red but they weren't exactly streaks, trying to explain, more like someone took a marker and made a constellation of 2 or 3 connect the dots crooked but in a line, not a shape. the colors kept flashing from green to red. this was during the day. i was on the front porch reading one night (dark except for porch lite)and had flashes of different colors of light in my head, and felt a shaking sensation like my head was shaking so hard, i don't know if it really was. I tried to tell my bf right next to me but couldn't find the words, it only lasted maybe a minute i believe at best. he wasn't paying attention so didn't notice anything. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 22, 2013 Author Report Share Posted March 22, 2013 Angela that is definitely not AMN at all. I don't know what tests your doc has done, but You might want to check out absence seizures. This can cause dots in your vision like you are describing. The fact you couldn't find the words to tell your BF is another clue. Good luck. Quote Link to comment Share on other sites More sharing options...
issie Posted March 22, 2013 Report Share Posted March 22, 2013 Angela that is definitely not AMN at all. I don't know what tests your doc has done, but You might want to check out absence seizures. This can cause dots in your vision like you are describing. The fact you couldn't find the words to tell your BF is another clue. Good luck.Angela,I thought the same thing - when I read this. This may give you a whole lot of answers to pursue this as an issue.Issie Quote Link to comment Share on other sites More sharing options...
Orthohypo Posted March 25, 2013 Report Share Posted March 25, 2013 Thanks Rama -I knew you would know! I'll have to look these up and learn more. If its not too much trouble and you can point me in some good directions I'd like to get some good info. Quote Link to comment Share on other sites More sharing options...
Orthohypo Posted March 25, 2013 Report Share Posted March 25, 2013 Most of those the migraine vasoconstrictors work by activating serotonin receptors. Ergotaimine and dehydroergotamine work in a similar way and are ruotinely prescribed for OI in australia. Oops, forgot to quote what I was thanking Rama for. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 25, 2013 Report Share Posted March 25, 2013 acute macular neuroretinopathySounds interesting. As I reported earlier I had a random retinal hemmorage that resulted in a scotoma of a similar shape to what is described in this condition.When i went to the eye hospital about it (and waited 22 hours!) I was one of four young males with a suddent weird scotoma that had appeared in their vision overnight. the three of us were told we all had retinal bleeds that would cause scotoma but not to worry about it and the last guy was found to have had severel mini strokes and was put straight into the hospital.When I went back later they said I had unusually vasoconstricted retinal blood vessels. I was unmedicated at the time POTS wise. My POTS doc said that POTS causes this and may account for my weird retinal bleed. I was also on anti inflammatories at the time and he said that might have done it as well. But the other thing was I remembered I was using eye drops occasionally as my eyes were red and inflammed.Just thoughts. Potentially the lack of blood flow to the brain and eyes could actually be causing the retinal bleeds rather than you taking vasoconstrictors. If they improve brain blood flow you would THINK that it might actually make it less likely to happen? I could be wrong though.Anyway - im embarking on my psuedo journey right now. Wish me luck Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 25, 2013 Author Report Share Posted March 25, 2013 Here's a few links if you are interested. You may have already come across them though. I'm actually surprised more people with POTS don't have this. I can't imagine having vision loss near the center vision would go unnoticed in most people. But who knows! hahahttp://journals.lww.com/retinalcases/Abstract/2013/00720/ACUTE_MACULAR_NEURORETINOPATHY_ASSOCIATED_WITH_THE.9.aspxhttp://www.ncbi.nlm.nih.gov/pubmed/1841003http://www.ncbi.nlm.nih.gov/pubmed/2629043?dopt=Abstract&holding=npghttp://www.ncbi.nlm.nih.gov/pubmed/3428103?dopt=Abstract&holding=npgGood luck with your pseudo journey. I may have to take some today because my sinuses are a mess. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 26, 2013 Report Share Posted March 26, 2013 On my second dose of sudafed today. Interesting. My palms are very sweaty... Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 26, 2013 Report Share Posted March 26, 2013 Well I must say it has been interesting. Much more easily tolerated for me than Midodrine which kinda makes no sense as Midodrine supposedly only activates alpha receptors and does not cross the blood brain barrier, where as sudafed releases NE and does cross the blood brain barrier.The only negative was that after both doses for the first half an hour I feel very quesy like midodrine made me feel the whole time. Then what I assume is the dopamine came in and I felt good, great, relaxed rather than stimulated. The first half an hour also I was highly sensitive to noise like i was getting a migraine and even felt the start of one on one side but it went away.All in all, I dont feel at all wired on it, not really any tachy I can feel, just hotter, stronger and more normal. I dont feel like when on midodrine where im wound up or anything at all.Didnt last long though - two hours I guess.I was thinking in NET deficiency there is blunted NE release in response to orthostatic stress - perhaps this might stimulate NE release in this setting? No idea, just speculating. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 26, 2013 Author Report Share Posted March 26, 2013 Phew I'm glad you did ok on it Rama. I didn't want to hear you had some horrific experience. Yes it does not last very long. 2 hours sounds about right to me. I did end up taking some yesterday and I think it aggravates my eye problems. I finally gave in and am now taking antibiotic for my sinuses. I'm becoming addicted to the phenylephrine sinus spray! It's not good at all.I have no idea if this makes any sense with NET deficiency...I was trying to figure that out too. Most people on here do absolutely horrible on these kinds of drugs. Someone just made a post about a nasal spray making them awful and here I think they make me feel great. What makes us different? haha Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 27, 2013 Report Share Posted March 27, 2013 Well it definately helped me. I didnt sleep very well however but that could just be random and I was a little irritable afterwards (not hugely so but just a bit). Certainly helps though. I was surprised. Thanks for the tip.Not sure if Id want to take it every day just because it is after all what it is but it was an interesting result. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 27, 2013 Report Share Posted March 27, 2013 it was basically like you said - a feeling similar to longer acting coffee. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 27, 2013 Report Share Posted March 27, 2013 Made me kinda thirsty. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 27, 2013 Author Report Share Posted March 27, 2013 I agree I have no intentions of taking this every day. It is definitely an interesting find. Yesterday when I took it, I noticed my appetite was weaker than usual.This whole experience is such a weird thing to stumble upon, but I have no idea what this means or where this leads me...haha Quote Link to comment Share on other sites More sharing options...
GypsySoulNicole Posted March 27, 2013 Report Share Posted March 27, 2013 Interesting, Pseudoephedrine messes me up, so does ephedrine, but Adderall is my life saver. Last spring I had a sudden scotoma. I was outside watering flowers when it came on, and it scared the heck out of me. Of course, freaking out sent my potsie heart flying and I ended up in the ER. Not much happened at the ER cause wouldn't you know I had a dystonic allergic reaction to the Reglan they gave me (for migraine). If you've never had a dystonic allergic reaction, it's a peach! I've had 3 now, all in a hospital to different meds and the best way to describe it is an immediate need to get the heck out of your body! It's horrific! Anyway, I followed up with 2 opthamologists and after MRI's, tests showing visual field loss etc., one of the docs suggested B12 deficiency as a possibility. I started supplements and my vision returned. I noticed a few days before the scotoma, my vision would slowly fade out, be almost gone for a few minutes then return blurred. I just wrote it off as normal pots stuff. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 27, 2013 Author Report Share Posted March 27, 2013 Very interesting! I have a few questions if you don't mind... How long did you have the scotoma? Where was it in your vision? How long after taking B12 did it go away? I assume they saw absolutely nothing on your exams. Did they do any other scans?Unfortunately I have been eating B12 tabs and I gave myself an injection to see if it would make any difference and it hasn't. Maybe I'll do my last injection today just to be sure. I have had issues with B12 in the past so that was one of my first thoughts. It never caused vision loss for me though. I'm following about 4-5 other people who have this acute presentation of a scotoma and we have been bouncing ideas back to each other. The other woman has had it for a few weeks longer than me. One lady has had it for 8 years I think. Both of them actually report POTS like symptoms, but are not diagnosed. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 28, 2013 Report Share Posted March 28, 2013 Dana I assume someone has looked at the diameter of your retinal blood vessels? Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 28, 2013 Author Report Share Posted March 28, 2013 I have no idea...Do you know which test would show that? Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.