Quick update for those that know me. Still doing well with 240mg propranalol. I have some minor dizzy episodes, especially if I stand up too quickly. However, going from 24/7 rocking to now being back at work is great
I do seem to have some eye issues though!! I have written about these before. I have had symptoms where on waking everything looks green for a few seconds (weird!) to increased floaters, to the latest, a flickering sensation. It is hard to explain, but it is almost like the iris is expanding and then shrinking back to its normal size. I know some of you have some visual problems, these are fairly new to me! Does anybody have anything similar?
Anyway, to finish on a positive note, even with the flickering eyes I am very grateful to have come as far as I have in such a short space of time. So, to those of you who haven’t found the correct medication yet, try to stay positive, you will get there.
Glad to hear you are doing well on the propranolol. Can I ask at what dosage you started to see improvements ? I’m currently on 80mg a day and tolerating the meds quite well, although I’m getting migraine attacks most days and the dizziness remains. Also how long have you been taking it ?
As for the flickering eye issue, I get this a lot with straight vertical or horizontal lines. Blinds are the worst for me, we have vertical blinds in our lounge and if they are slightly open to allow light in, when I go to look at them my vision seems to jump and flicker. Not pleasant!
Thanks for posting something positive, it’s good to see someone doing so well. What % would you rate yourself at ? I’m currently off work and am really looking forward to getting back for some Normality.
Hi. A few days ago I would have said 95%, getting a little dizziness at the moment unfortunately. It has taken me by surprise.
I take 240mg of propranalol and have been on that dosage for around 2 months I think. I noticed the benefits after being on that dosage for about 4 weeks. Dr Silver says that you need to be on the max tolerated dose for 3/4 months before you see the benefits so I was doing well. It has helped hugely so am just hoping this is a little blip.
I’m not on any meds. Thot I should say that upfront. My doctor wants me to try topamax but I’ve read that some people end up with an increase in visual issues and I’m more afraid of that happening than in just getting thru each day with what I already have.
I have a multitude of visual symptoms: visual flickering, shimmery edges to my vision, occasional pulsatile oscillopsia, palinopsia, flickers of what I would swear is a bird flashing by but there’s nothing there, extreme sensitivity to light, sometimes I can see my eyeball veins in my field of vision, difficulty focusing on printed words. I haven’t had the green vision or the fluctuating iris. Yet.
Hi, I know exactly what you mean and get the flickering exactly as you described. It feels like a fluttering inside the eye. I also get twitchy eyelids as well a especially when I am tired. I also have terrible floaters to the point where I can only read with one eye or have to look up to get them out of the way and then quickly down to read something before they drift back again. I also get blue flashes and black spots. Yesterday I thought my friend had a fly over her head but it was my eyes! I was trying really hard to focus on her face at the time as she was also wearing a black and white striped t shirt which was jumping out at me. The weirdest thing I get though is a circle like a flower or exploding star right in the centre of my vision ( only when I look with both eyes, if I close one it goes) if I have been focusing on something close to for a while. This illness drives me nuts and nothing surprises me any more. All of these things though are nothing compared to the dizziness.
Thank you MsMolly and Nubs. Although I am very sorry you have experienced all these vision problems it helps to know that I am not alone. I am at a low ebb at the moment as I have tonsillitis and things seem to be getting on top of me again.
I am trying to remain positive and not freak out too much. I will post what Dr Silver makes of it all on Thursday. Thanks again.
Quick update for those that know me. Still doing well with 240mg propranalol. I have some minor dizzy episodes, especially if I stand up too quickly. However, going from 24/7 rocking to now being back at work is great
I do seem to have some eye issues though!! I have written about these before. I have had symptoms where on waking everything looks green for a few seconds (weird!) to increased floaters, to the latest, a flickering sensation. It is hard to explain, but it is almost like the iris is expanding and then shrinking back to its normal size. I know some of you have some visual problems, these are fairly new to me! Does anybody have anything similar?
Anyway, to finish on a positive note, even with the flickering eyes I am very grateful to have come as far as I have in such a short space of time. So, to those of you who haven’t found the correct medication yet, try to stay positive, you will get there.
X x x
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I have increased floaters (already have intermediate uveitis) and i also have the flickering - all the time, sometimes my eyelid even starts quivering - v annoying!
SOOOOOO good to hear you’re having success with the propranolol - how long did this take for you? I’m on 20mg at night and 10mg in the morning now and still no joy xxx
Hi I’m on 240mg and I would say I started to feel the benefit about a month after being on that dose. Dr Silver says that you need to aim for the highest tolerated dose and stay on it for 3/4 months before expecting to see results.
Unfortunately I’m having my first breakthrough, I have tonsillitis so I think it may have triggered it. It’s a bit disappointing but I’m trying to stay positive and not worry too much (easier said than done!)
Hope you feel better soon
X x
I started 80mg propranalol in March and very slowly titrated up. I think I moved up to 240mg in about mid April. It does take a while to do anything for the dizziness. Well, it did for me. I did find my anxiety decreased immediately. I think if I wasn’t taking propranalol at the moment I would be even more anxious than I already am!! So, even though I am not too good at the moment I have got to say it has been a success up until now.
Hi I’m on 240mg and I would say I started to feel the benefit about a month after being on that dose. Dr Silver says that you need to aim for the highest tolerated dose and stay on it for 3/4 months before expecting to see results.
Unfortunately I’m having my first breakthrough, I have tonsillitis so I think it may have triggered it. It’s a bit disappointing but I’m trying to stay positive and not worry too much (easier said than done!)
Hope you feel better soon
X x
I started 80mg propranalol in March and very slowly titrated up. I think I moved up to 240mg in about mid April. It does take a while to do anything for the dizziness. Well, it did for me. I did find my anxiety decreased immediately. I think if I wasn’t taking propranalol at the moment I would be even more anxious than I already am!! So, even though I am not too good at the moment I have got to say it has been a success up until now.
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Thanks for the info Kathy. Take comfort in that we all share the symptoms, so we have the right diagnosis and are on the right path for recovery! x
