Hi Guys
A quick update regarding my latest ophthalmologist visit. This second visit to the ophthalmology department was a long time coming. 2 years had actually past since my first visit. Anyway I was sent back to get my eyes further examined to see if they could be the cause of my unrelenting balance and vertigo problems. I never got a clear explanation the first time around so was hoping for further testing and answers and possibly some solutions thrown my way. Unfortunately I came away none the wiser. Instead of anything new being done I was given exactly the same eye tests as last time and was told they didn't think it was my eyes causing the balance problem but an underlying vestibular disorder causing the eye movement issues I have. No solutions were put forward except for one which I will get to in a moment which I found ridiculous.
The eye examination revealed the same four eye movement issues that were evident last time. No changes except a possible slight weakness of my left eye muscle. I was told they didn't know why the weakness.My left eye was double/blurred on the day but I have to say I past the actual vision tests and depth perception tests with flying colours. All are excellent which is weird considering my depth perception seems way off and my left eye vision is blurred frequently. The blurring/doubling comes and goes frequently.
After having seen the woman who carried out the eye examination I was then told to make my way down the corridor to see the main specialist. He told me that my vision is fine and that thy are not causing the dizziness and that I should go and see a neurologist. I asked if I could be referred to a neuro ophthalmologist since they are the brain and eye specialists and have various treatments available. His reply was that there was no point since my vision is great and he thinks that they would not be able to anything for me. I can't say I am too happy about that. I suppose I am going to have to pay privately in the future to see a neuro ophthalmologist because I still convinced my eyes are playing a significant role in all of this.
He asked if I balance better when covering one eye. I said that maybe it helps a tiny bit but I really can't be sure because there certainly isn't a significant change. He then told me to buy an eye patch and see if it helps. I was then told that if it helps then I should wear it. I asked how long for and he said "forever".
So after 10+ years of constant dizziness and vertigo that is the best advice I was offered. To wear a F****** eye patch for the rest of my days. This is the year 2018 and that is a treatment solution. The thing is wearing an eye patch doesn't help at all and only makes my perception of an already wobbly/whirling world even more off. My depth perception test results may have come back good but try covering one eye and see how one's depth perception appears. Couple that with my head symptoms and visual problems and it just makes matters worse. I'm actually really pissed off about the whole thing. I really expected something different this time but instead repeated the same old tests with absolutely no further investigation or help offered.
The appointment was a huge let down and actually turned out to be one of the worst experiences I have had vertigo wise. I felt awful going to the hospital that day and was so off balance and wobbly making my way through the car park and into the hospital. Trying to navigate through the winding corridors in the dull artificial light and patterned walls and floors was disorientating. I can honestly say even after all these years and numerous hospital visits my head and balance was intensely unnerving.
The worst moment came after having those eye tests which took about 45 min. I was told to make my way out of the office and turn right down the corridor to the next waiting room. The eye tests took their toll on me because as I left the room to turn right my whole world was a disorientating hell even more so than coming in. It's probably the dizziest and out of sorts I have ever been. Most definitely a top five moment. I had real problems just turning my head or simply moving my eyes. The swaying and bouncing and unsteadiness really felt too much. I had all these people waiting in the corridor and people walking by me and I honestly didn't know how I was going to put one foot in front of the other to get to the next waiting room. I was so overcome with disorientation/vertigo and dizziness. I think it is probably the first time that I have ever felt totally vulnerable. There was a moment when I truly thought I would have to lean back on the wall behind me and slide down to a seated position. If I could have ran a way at that moment I would have but there so many people around me that I just knew I had no chance of moving with any finesse through them plus I had another appointment to attend. It was scary. Anyway I stood outside the waiting room for 30 min feeling totally out of it as I could not bring myself to walk into the seated area for fear of falling over.I was going through all of this whilst trying to look completely normal and composed as I didn't want any attention drawn to myself. I don't know why my symptoms became so bad that day. The truth is however is that I am not doing too good symptom wise as of late anyway.
What is so devastating about the whole day is that I could still feel that bad even after all of this time. That my head and body could fail me like that after 10 years. To feel that way and then be told a garbage non solution like wearing an eye patch is overwhelmingly disheartening. Don't they think that if covering one eye was the fix that I probably would have realized that myself years and years ago.
So there you have it. Yet another unsuccessful visit. Still non the wiser and stuck in this dizzy limbo. I feel so let down by the whole medical system. I just feel like I have never really been helped. I won't give up though. Next I will be asking my GP for a referral to a neurologist (since the ophthalmologist suggested it). I have never seen a neurologist before. I's odd isn't it. 10 years of a chronic head problem and I have never been offered a neurologist. Also I can see a neuro ophthalmologist visit is in my future. Not sure how much that will cost.
I will leave it there guys. Until next time
Swimmyhead
A quick update regarding my latest ophthalmologist visit. This second visit to the ophthalmology department was a long time coming. 2 years had actually past since my first visit. Anyway I was sent back to get my eyes further examined to see if they could be the cause of my unrelenting balance and vertigo problems. I never got a clear explanation the first time around so was hoping for further testing and answers and possibly some solutions thrown my way. Unfortunately I came away none the wiser. Instead of anything new being done I was given exactly the same eye tests as last time and was told they didn't think it was my eyes causing the balance problem but an underlying vestibular disorder causing the eye movement issues I have. No solutions were put forward except for one which I will get to in a moment which I found ridiculous.
The eye examination revealed the same four eye movement issues that were evident last time. No changes except a possible slight weakness of my left eye muscle. I was told they didn't know why the weakness.My left eye was double/blurred on the day but I have to say I past the actual vision tests and depth perception tests with flying colours. All are excellent which is weird considering my depth perception seems way off and my left eye vision is blurred frequently. The blurring/doubling comes and goes frequently.
After having seen the woman who carried out the eye examination I was then told to make my way down the corridor to see the main specialist. He told me that my vision is fine and that thy are not causing the dizziness and that I should go and see a neurologist. I asked if I could be referred to a neuro ophthalmologist since they are the brain and eye specialists and have various treatments available. His reply was that there was no point since my vision is great and he thinks that they would not be able to anything for me. I can't say I am too happy about that. I suppose I am going to have to pay privately in the future to see a neuro ophthalmologist because I still convinced my eyes are playing a significant role in all of this.
He asked if I balance better when covering one eye. I said that maybe it helps a tiny bit but I really can't be sure because there certainly isn't a significant change. He then told me to buy an eye patch and see if it helps. I was then told that if it helps then I should wear it. I asked how long for and he said "forever".
So after 10+ years of constant dizziness and vertigo that is the best advice I was offered. To wear a F****** eye patch for the rest of my days. This is the year 2018 and that is a treatment solution. The thing is wearing an eye patch doesn't help at all and only makes my perception of an already wobbly/whirling world even more off. My depth perception test results may have come back good but try covering one eye and see how one's depth perception appears. Couple that with my head symptoms and visual problems and it just makes matters worse. I'm actually really pissed off about the whole thing. I really expected something different this time but instead repeated the same old tests with absolutely no further investigation or help offered.
The appointment was a huge let down and actually turned out to be one of the worst experiences I have had vertigo wise. I felt awful going to the hospital that day and was so off balance and wobbly making my way through the car park and into the hospital. Trying to navigate through the winding corridors in the dull artificial light and patterned walls and floors was disorientating. I can honestly say even after all these years and numerous hospital visits my head and balance was intensely unnerving.
The worst moment came after having those eye tests which took about 45 min. I was told to make my way out of the office and turn right down the corridor to the next waiting room. The eye tests took their toll on me because as I left the room to turn right my whole world was a disorientating hell even more so than coming in. It's probably the dizziest and out of sorts I have ever been. Most definitely a top five moment. I had real problems just turning my head or simply moving my eyes. The swaying and bouncing and unsteadiness really felt too much. I had all these people waiting in the corridor and people walking by me and I honestly didn't know how I was going to put one foot in front of the other to get to the next waiting room. I was so overcome with disorientation/vertigo and dizziness. I think it is probably the first time that I have ever felt totally vulnerable. There was a moment when I truly thought I would have to lean back on the wall behind me and slide down to a seated position. If I could have ran a way at that moment I would have but there so many people around me that I just knew I had no chance of moving with any finesse through them plus I had another appointment to attend. It was scary. Anyway I stood outside the waiting room for 30 min feeling totally out of it as I could not bring myself to walk into the seated area for fear of falling over.I was going through all of this whilst trying to look completely normal and composed as I didn't want any attention drawn to myself. I don't know why my symptoms became so bad that day. The truth is however is that I am not doing too good symptom wise as of late anyway.
What is so devastating about the whole day is that I could still feel that bad even after all of this time. That my head and body could fail me like that after 10 years. To feel that way and then be told a garbage non solution like wearing an eye patch is overwhelmingly disheartening. Don't they think that if covering one eye was the fix that I probably would have realized that myself years and years ago.
So there you have it. Yet another unsuccessful visit. Still non the wiser and stuck in this dizzy limbo. I feel so let down by the whole medical system. I just feel like I have never really been helped. I won't give up though. Next I will be asking my GP for a referral to a neurologist (since the ophthalmologist suggested it). I have never seen a neurologist before. I's odd isn't it. 10 years of a chronic head problem and I have never been offered a neurologist. Also I can see a neuro ophthalmologist visit is in my future. Not sure how much that will cost.
I will leave it there guys. Until next time
Swimmyhead
Hi I’ve been trying to reach out for a while. Which medications have you tried? Effexor XR is now considered the holy grail for Vestibular Migraine and other Vestibular disorders. Have you heard of Chronic Subjective Dizziness? Not a primary cause often but can make everything 100 times worse. What about proprioceptive disorder? Have you been tested for intercranial hypertension?
ReplyDeleteHi Samantha
ReplyDeleteThank you so much for reaching out. Medications I have tried are - Amitriptyline,Topiramate,Serc and for many years was on a combination of gabapentin and nortriptyline daily. I have been medication free for about 6 months now. Probably had better moments whilst taking the combination meds.
I have heard of Effexor being used for vestibular issues like migraine and believe I once asked a GP about it but I'm sure I recall him saying that it wasn't used in the UK. This was many years ago however.
Yes I have heard and read about Chronic subjective dizziness. The symptoms are exactly what I am experiencing after a sudden acute vertigo attack back in 2007. Whatever happened that day I never recovered from.
I have never been tested for intercranial hypertension. I have never heard of it until you mentioned it. I honestly don't know what is going on. The diagnoses I was given nearly 6 years ago now is that I have vestibular migraine but how can a migraine last 24/7 for over 10 years with not a seconds rest. I have followed all the migraine rules such as a drastic diet change,water,medications,exercise etc but no luck. So I really doubt this diagnoses.
Thank you again Samantha for reaching out and sharing your thoughts and offering ideas. I really do appreciate you taking the time.
Effexor is definitely available in the UK, if you haven’t tried it yet I would encourage you to demand it from your GP. You can get one that is slow release in which you can break open and Microdose. This was a new term to me until I read about it from other users on a Facebook support group. If you are not a member of any, please let me know and I can add you to the ones I am in. They are of huge help, and I have discovered so many different causes for dizziness and meds ect through these groups. Unfortunately if you have a combination of VM and PPPD then you will not get relief unless you find a treatment that suits you. Basically you are having VM attacks which can be triggered by weather, light ect not just food, then your brain is refusing to let the attack go so you are now stuck in a constant loop. I’m surprised you haven’t seen a neurologist, this was first port of call for me in Scotland. Are you on Facebook? Please don’t suffer alone, there are so many groups and people have posted how they went from bedbound to 85/90% better. Intercranial hypertension is excess fluid in the brain, diagnosed by Spinal Tap and can cause dizziness ect too. The meds you tried, did you give them all a good 3 months of increasing dose ect to check if they worked? In terms, of your eyes have you been tested for vertical hererophria? A professor in Portugal has been treating patients for Proprioceptive Disorder since the 70s successfully with lenses. You can read about it on his website, I myself am thinking about visiting him. The NHS are not currently interested in this concept. His website is https://www.orlandoalvesdasilva.org.
ReplyDeleteIf you are interested in chatting more, please let me know and I can add you to these Facebook groups. I’ve learned so much from them, they really help.
kassam faruk
Deleteis my facebook plz help me
my cntct 07392800391
i just tried to add u on facebook
DeleteHi Samantha
ReplyDeleteI will most certainly be asking about Effexor and a neurologist appointment on my next GP visit which will be a few weeks from now. I did ask about it years ago but was told that because of some law stopped they were unable to prescribe it.That was probably back in 2010 I guess things are different now.
Everything you said about migraine and being stuck in a constant loop is exactly what I was told by a specialist in London. It's so hard to believe though isn't it.
I too am very surprised not to have seen a in all this time.Once again I have asked and the response was "I don't know what they could do for you". The same response I had the other week from the ophthalmologist when I asked to be referred onto a neuro ophthalmologist. I just can't seem to get professionals to go that extra distance.In my time I have seen two diffrent ENT departments at two different hospitals and a neuro otologist in London and of course many GP visits.
I was contacted via this blog by a Chicago and New york based team who treat vertical heterophoria.They kindly offered their help. I have mentioned it and prism lenses to opticians and on both visits to the ophthalmologit but it seems they have never heard of it and look at me as if I have mis pronounced something.
I was just wondering how did your problems begin. How long have you been suffering?Have you found any significant relief?
If you look on the right hand side of my blog and perhaps scroll down a bit you will see a contact form. If you want you can message me through this then future messages will come directly to my personal email inbox rather than be displayed publicly on my blog.
I have a facebook profile and have seen many support groups but my facebook profile is not associated to my alter ego swimmyhead lol.