Hi Guys
Hope you have had a lovely Christmas. I have actually been quite brave this December making myself leave the house and have an evening out with friends TWICE. It was nice to be out mingling with the world as it's been some time. The first night out a couple of weeks back was a success as it happened to fall on a less dizzy day but my second evening out with friends on Christmas eve proved to be more demanding on the wonky vestibular system but I did it and enjoyed it. It was cool bumping into older friends I have not seen in years, they thought I had dropped off the face of the earth. However the evenings shenanigans must have took a tole because Christmas day was the dizziest day I have had in some time.
Its strange because on one hand I was really happy to be out feeling like a normal human being but at the same time I felt sadness over what I have missed out on over these years. All the good times and memories I could have had with friends and family were not meant to be. Anyway I have told myself that 2016 is the year I do more of this kind of thing when I feel up to it. I won't hide away any longer.
So there you have it. I have been to a christening and had two nights out all in the space of a month. It has to be the most adventurous month I have had in 8.5 years. Not once was I vertigo free but I managed. It has taught me not to get so nervous about gathering or events in the future. When my symptoms are all consuming then I obviously cannot attend such events which really P***** me off because at my age I should be in control of my life and be able to go out when I want and do as I please but sadly there is little control in life when you have a chronic vestibular disorder.That being said I do have days when my symptoms are less intense and I must take advantage of these moments in the future.Getting out and mingling and being part of the human race every once in a while can only be a good thing
Happy Christmas guys
keep pushing on
Swimmyhead
Tuesday, 29 December 2015
Thursday, 3 December 2015
Calmer seas,Christening and Chinese food
Hi Guys
Thought I would check in and let you know whats going on with me at the moment. If you have already read my previous post you will know that I was prescribed betahistine to see if it calms my symptoms. Well, that was a month ago and I have yet to take them. The reason being is that I have had a pretty good month balance/dizziness wise and don't want to rock the boat. Sure I have a level of dizziness and a light head throughout the days but I am able to function pretty well. I have no idea why the steadier balance and clearer head but it's nice to have these moments. I have no way of knowing how long the calmer seas will last but when it ends ( I am sure it will) I will then turn to the betahistine. If I took it now and it helped I might not feel the benefits(if any) because I feel ok. I think it best to take them when I am back to that disorientating hell and I will get a clearer picture if they work for me or not. My plan is to still come of my current medication after the trial with betahistine and try that other medicine I talked about previously. The medicine that helped that young man go from a vertigo ridden state to having his life back. So things are taking a little longer than planned but like I said I don't want to rock the boat with new medications whilst am having a better time of things.
On another note my friends had their children christened this past weekend and I was honoured to be a Godparent. Of course I was stressing a little weeks before the day because I have no control over the intensity of my symptoms. I didn't know if I would wake up really dizzy and disorientated or with more manageable symptoms. Luckily it was the latter and I had a nice day. I also had Chinese food for the first time in about 10 years which if you are on a migraine diet is a BIG no no (MSG). I can happily say it did not effect me negatively at all. It was delicious.
So there ya have it. Ill keep you guys posted.
Swimmyhead
Thought I would check in and let you know whats going on with me at the moment. If you have already read my previous post you will know that I was prescribed betahistine to see if it calms my symptoms. Well, that was a month ago and I have yet to take them. The reason being is that I have had a pretty good month balance/dizziness wise and don't want to rock the boat. Sure I have a level of dizziness and a light head throughout the days but I am able to function pretty well. I have no idea why the steadier balance and clearer head but it's nice to have these moments. I have no way of knowing how long the calmer seas will last but when it ends ( I am sure it will) I will then turn to the betahistine. If I took it now and it helped I might not feel the benefits(if any) because I feel ok. I think it best to take them when I am back to that disorientating hell and I will get a clearer picture if they work for me or not. My plan is to still come of my current medication after the trial with betahistine and try that other medicine I talked about previously. The medicine that helped that young man go from a vertigo ridden state to having his life back. So things are taking a little longer than planned but like I said I don't want to rock the boat with new medications whilst am having a better time of things.
On another note my friends had their children christened this past weekend and I was honoured to be a Godparent. Of course I was stressing a little weeks before the day because I have no control over the intensity of my symptoms. I didn't know if I would wake up really dizzy and disorientated or with more manageable symptoms. Luckily it was the latter and I had a nice day. I also had Chinese food for the first time in about 10 years which if you are on a migraine diet is a BIG no no (MSG). I can happily say it did not effect me negatively at all. It was delicious.
So there ya have it. Ill keep you guys posted.
Swimmyhead
Friday, 6 November 2015
There is hope
Hi Guys
This week a friend of mine who is a nurse called me and told me she had been talking to a neurologist she is currently working with about my balance problem. To her surprise he told her a story about a young guy who he treated in the past who had suffered the same dizzy fate. This guy was convinced after 5 years he would never get better because everything he tried simply did not work (sounds very familiar). He could not work and didn't meet friends. He simply was housebound. Anyway to cut a long story short they tried him on a medication that can actually be purchased over the counter and unbelievably within 2 weeks he was symptom free. After 5 years of hell and no hope he is now working and loving life.
He told my nurse friend the name of the medication and of course she told me. Now it's not my place to be talking about different medications since I am not a doctor and I do not want anyone reading this to run off and buy the medication and harm themselves. So I am not going to name the medication just yet ( I will once I try it, I promise you guys).
So to be on the safe side I went and saw my doctor and asked about this particular medication and she was happy to give it a shot ( I was so excited). However the excitement was short lived as it seems this particular medication may cause severe side effects when combined with my current meds. However there is still good news in that my doctor is willing to prescribe me this but I must ween myself off of the meds I am currently taking(Woo Hoo).
I also asked if there were any meds that I might try that act as a vestibular suppressant something that could help mask or decrease the sensation of vertigo. Since I have never ever been given any medication to help the severe sensations I live with. So in the meantime I have been prescribed betahistine. Which many of you guys have probably tried especially meneire's patients.I have never tried this before but have obviously heard of it. I am hoping it will help mask my symptoms that truly would be something.
At this point in my journey (8.5 years) I am willing to try anything even if it only masks the cruel sensations. So there you go, I'm going to try betahistine for a month or so then ween myself off of my current meds and try the medication that gave that young man his life back.
There is hope
Swimmyhead
This week a friend of mine who is a nurse called me and told me she had been talking to a neurologist she is currently working with about my balance problem. To her surprise he told her a story about a young guy who he treated in the past who had suffered the same dizzy fate. This guy was convinced after 5 years he would never get better because everything he tried simply did not work (sounds very familiar). He could not work and didn't meet friends. He simply was housebound. Anyway to cut a long story short they tried him on a medication that can actually be purchased over the counter and unbelievably within 2 weeks he was symptom free. After 5 years of hell and no hope he is now working and loving life.
He told my nurse friend the name of the medication and of course she told me. Now it's not my place to be talking about different medications since I am not a doctor and I do not want anyone reading this to run off and buy the medication and harm themselves. So I am not going to name the medication just yet ( I will once I try it, I promise you guys).
So to be on the safe side I went and saw my doctor and asked about this particular medication and she was happy to give it a shot ( I was so excited). However the excitement was short lived as it seems this particular medication may cause severe side effects when combined with my current meds. However there is still good news in that my doctor is willing to prescribe me this but I must ween myself off of the meds I am currently taking(Woo Hoo).
I also asked if there were any meds that I might try that act as a vestibular suppressant something that could help mask or decrease the sensation of vertigo. Since I have never ever been given any medication to help the severe sensations I live with. So in the meantime I have been prescribed betahistine. Which many of you guys have probably tried especially meneire's patients.I have never tried this before but have obviously heard of it. I am hoping it will help mask my symptoms that truly would be something.
At this point in my journey (8.5 years) I am willing to try anything even if it only masks the cruel sensations. So there you go, I'm going to try betahistine for a month or so then ween myself off of my current meds and try the medication that gave that young man his life back.
There is hope
Swimmyhead
Thursday, 8 October 2015
Opthalmologist Update
Hi guys
I have been to see an opthalmologist this week and it seems I have a few issues regarding my eye functioning. It was no surprise really since I have always felt that my eye movements have been wrong ever since that life changing morning I woke up to spinning vertigo. My eye sight and eye health are great which is always nice to know but there are slight abnormalities in the way my eyes work together and move.
I should say that my eyes have always been in good health with no abnormalities present until I was hit with Vertigo back in 2007.
Below is the basics of what I was told by my opthalmologist this week:
1. I definitely have slight nystagmus when looking hard left and hard right. This is no surprise to me since I have been told this many time before. This started after the very first attack of vertigo back in 2007 and is still present to this day. It is not at all noticeable when looking at me.
2.My eyes now apparently want to wander outwards away from each other. This is a fairly common issue for people. It is not noticeable when looking at me.
3.The way my eyes zoom in and out is now slightly abnormal. This has been obvious to me all these years. When I use to do vestibular rehab and had to follow my finger in and out my vision was and is very slow to zoom from a close object to a distant object. It just does not feel quick and easy anymore.
4.This one concerns me a little. I know have a slight abnormality in the way my eyes move up and down.
5.This has nothing to do with the dizziness but I also have a recurrent corneal erosion (they should just call it agony) and have been advised to use Lacri lube in my eye before bed every night indefinitely.
So there you have it 4 different issues effecting my eye functioning at all times. Simply put my eyes cannot keep a steady gaze to far right or far left. They want to drift apart. They are not efficient at zooming in and out and the up and down movement of my eyes have some sort of issue going on. Basically my eyes don't work efficiently in any direction it seems. Fabulous.
No bloody wonder I cannot track movement without feeling like I'm falling and the world bounces and sways. No wonder I get headaches and strained eyes. No wonder I always feel like I am having to work at looking out at the world rather than it feeling easy and natural. No wonder I can't maintain a steady gaze.
I was not told if my eyes are causing the vertigo nor was I told that my suspected vestibular migraine was causing the weird eye issues. It seems to me that the vestibular attack I had all them years ago has done something to my eye functioning.I have always felt this. Might I still have a vestibular problem that is the root cause of my eye problems? or might it be that my eyes are now the root cause for my vertigo? I still don't know unfortunately but I do know they have certainly got to be playing a major role in this madness.
I had a thorough eye examination and there was a lot of writing and notes which are now passed on to another consultant but I was not told much except for the above. I do remember being told that unsteadiness in the dark tends to be inner ear related (I am very unsteady in the dark). I wish I had asked more questions or listened harder looking back but don't we all.
Anyway I have another appointment with them in 2 months to firstly get a small eye cyst removed and then to look further into my eye functioning issues and the dizziness.
So guys if you are dealing with vertigo and chronic dizziness I suggest you go see an eye specialist (not optician). An opthalmologist. I wish I had done this years ago because my eyes have felt wrong all these years.You would think that out of all the doctors and consultants I have seen one would have advised me to get my eyes examined by a specialist considering how vital a role the eyes are to the vestibular system and the fact that consultants in the past have diagnosed me with slight nystagmus (a binocular vision diorder).
One more thing. I have been using gabapentin these last 3 years for my suspected migraine associated vertigo. I mentioned in an earlier post that I had read somewhere that Gabapentin is used to help calm nystagmus. The opthalmologist confirmed this so it makes me wonder even more that the reason I have been having more tolerable moment these past few years is because the medication is treating my nystagmus and maybe not suspected migraine. I don't know I am lost. I really am.
My eyes and ears are the bane of my life.
I 'll be back
Swimmyhead
I have been to see an opthalmologist this week and it seems I have a few issues regarding my eye functioning. It was no surprise really since I have always felt that my eye movements have been wrong ever since that life changing morning I woke up to spinning vertigo. My eye sight and eye health are great which is always nice to know but there are slight abnormalities in the way my eyes work together and move.
I should say that my eyes have always been in good health with no abnormalities present until I was hit with Vertigo back in 2007.
Below is the basics of what I was told by my opthalmologist this week:
1. I definitely have slight nystagmus when looking hard left and hard right. This is no surprise to me since I have been told this many time before. This started after the very first attack of vertigo back in 2007 and is still present to this day. It is not at all noticeable when looking at me.
2.My eyes now apparently want to wander outwards away from each other. This is a fairly common issue for people. It is not noticeable when looking at me.
3.The way my eyes zoom in and out is now slightly abnormal. This has been obvious to me all these years. When I use to do vestibular rehab and had to follow my finger in and out my vision was and is very slow to zoom from a close object to a distant object. It just does not feel quick and easy anymore.
4.This one concerns me a little. I know have a slight abnormality in the way my eyes move up and down.
5.This has nothing to do with the dizziness but I also have a recurrent corneal erosion (they should just call it agony) and have been advised to use Lacri lube in my eye before bed every night indefinitely.
So there you have it 4 different issues effecting my eye functioning at all times. Simply put my eyes cannot keep a steady gaze to far right or far left. They want to drift apart. They are not efficient at zooming in and out and the up and down movement of my eyes have some sort of issue going on. Basically my eyes don't work efficiently in any direction it seems. Fabulous.
No bloody wonder I cannot track movement without feeling like I'm falling and the world bounces and sways. No wonder I get headaches and strained eyes. No wonder I always feel like I am having to work at looking out at the world rather than it feeling easy and natural. No wonder I can't maintain a steady gaze.
I was not told if my eyes are causing the vertigo nor was I told that my suspected vestibular migraine was causing the weird eye issues. It seems to me that the vestibular attack I had all them years ago has done something to my eye functioning.I have always felt this. Might I still have a vestibular problem that is the root cause of my eye problems? or might it be that my eyes are now the root cause for my vertigo? I still don't know unfortunately but I do know they have certainly got to be playing a major role in this madness.
I had a thorough eye examination and there was a lot of writing and notes which are now passed on to another consultant but I was not told much except for the above. I do remember being told that unsteadiness in the dark tends to be inner ear related (I am very unsteady in the dark). I wish I had asked more questions or listened harder looking back but don't we all.
Anyway I have another appointment with them in 2 months to firstly get a small eye cyst removed and then to look further into my eye functioning issues and the dizziness.
So guys if you are dealing with vertigo and chronic dizziness I suggest you go see an eye specialist (not optician). An opthalmologist. I wish I had done this years ago because my eyes have felt wrong all these years.You would think that out of all the doctors and consultants I have seen one would have advised me to get my eyes examined by a specialist considering how vital a role the eyes are to the vestibular system and the fact that consultants in the past have diagnosed me with slight nystagmus (a binocular vision diorder).
One more thing. I have been using gabapentin these last 3 years for my suspected migraine associated vertigo. I mentioned in an earlier post that I had read somewhere that Gabapentin is used to help calm nystagmus. The opthalmologist confirmed this so it makes me wonder even more that the reason I have been having more tolerable moment these past few years is because the medication is treating my nystagmus and maybe not suspected migraine. I don't know I am lost. I really am.
My eyes and ears are the bane of my life.
I 'll be back
Swimmyhead
Wednesday, 9 September 2015
Ophthalmologist Appointment Soon
Hi guys
Three weeks from now I will see an ophthalmologist because of my corneal abrasion and more importantly my long term dizziness, I am hoping they find a reason as to why my eyes don't feel like they are working together (in sync). Of course I don't really want anything wrong with me but in some ways it would be nice to hear a reason for my problems in tracking motion,visual motion and holding gaze etc. I know the eyes are an important part of a healthy functioning vestibular system and that by having a vestibular problem the eyes will be effected but what if it is my eyes that are the sole reason for my ongoing balance issue and causing my vertigo or at least significantly contributing to it. I don;t know I guess I'm hoping they will find something wrong, give it a name and tell me they can fix it or at least significantly help my visual vertigo. It sounds a little optimistic I know.
I'll be sure to bring up nystagmus and vertical heterophoria and ask about other possible binocular vision disorders that might cause my symptoms. I want a thorough exam to test eye function. I just hope they take my numerous crazy symptoms seriously.
Swimmyhead
Three weeks from now I will see an ophthalmologist because of my corneal abrasion and more importantly my long term dizziness, I am hoping they find a reason as to why my eyes don't feel like they are working together (in sync). Of course I don't really want anything wrong with me but in some ways it would be nice to hear a reason for my problems in tracking motion,visual motion and holding gaze etc. I know the eyes are an important part of a healthy functioning vestibular system and that by having a vestibular problem the eyes will be effected but what if it is my eyes that are the sole reason for my ongoing balance issue and causing my vertigo or at least significantly contributing to it. I don;t know I guess I'm hoping they will find something wrong, give it a name and tell me they can fix it or at least significantly help my visual vertigo. It sounds a little optimistic I know.
I'll be sure to bring up nystagmus and vertical heterophoria and ask about other possible binocular vision disorders that might cause my symptoms. I want a thorough exam to test eye function. I just hope they take my numerous crazy symptoms seriously.
Swimmyhead
Saturday, 5 September 2015
A difficult 10 days
Hi guys
The last 10 days or so have been difficult. I have been experiencing a horrible level of dizziness yet again. It's full on from the moment I wake up until I eventually nod off at night. I have an inkling of what may have increased my dizziness and vertigo back to this all consuming level it is called WHEY PROTIEN. Now I cannot say with absolute certainty that this is the culprit as my vertigo tends to reach disorientating levels every so often but if migraine is the cause of my vertigo then I really should not have been drinking Whey protein shakes.
Whey protein,whey protein isolate,whey protein concentrate etc should not really be part of a migraine elimination diet but since I work out I thought I could try it and see how it goes. Well all was good for a week or so and BOOM the internal swaying and visual swaying and the slow tracking vision came back full force and I have been in a different world for the past 10 days or so. I am back to those horrible sudden sensations of falling or dropping when all I am doing is sitting still. Back is the bouncy castle floor and the full buzzing head pressure that stops me from turning or moving my head with any kind of speed. I did stop drinking the whey protein a week ago but the calmer intensity of my symptoms eludes me.
Here is a website that is useful for people trying to stick to a migraine diet and avoiding MSG.There is a huge list of ingredients and names that manufacturers use that have or may have MSG (monosodium Glutamate).
http://lifespa.com/sneaky-names-for-msg-check-your-labels/
Swimmyhead
The last 10 days or so have been difficult. I have been experiencing a horrible level of dizziness yet again. It's full on from the moment I wake up until I eventually nod off at night. I have an inkling of what may have increased my dizziness and vertigo back to this all consuming level it is called WHEY PROTIEN. Now I cannot say with absolute certainty that this is the culprit as my vertigo tends to reach disorientating levels every so often but if migraine is the cause of my vertigo then I really should not have been drinking Whey protein shakes.
Whey protein,whey protein isolate,whey protein concentrate etc should not really be part of a migraine elimination diet but since I work out I thought I could try it and see how it goes. Well all was good for a week or so and BOOM the internal swaying and visual swaying and the slow tracking vision came back full force and I have been in a different world for the past 10 days or so. I am back to those horrible sudden sensations of falling or dropping when all I am doing is sitting still. Back is the bouncy castle floor and the full buzzing head pressure that stops me from turning or moving my head with any kind of speed. I did stop drinking the whey protein a week ago but the calmer intensity of my symptoms eludes me.
Here is a website that is useful for people trying to stick to a migraine diet and avoiding MSG.There is a huge list of ingredients and names that manufacturers use that have or may have MSG (monosodium Glutamate).
http://lifespa.com/sneaky-names-for-msg-check-your-labels/
Swimmyhead
Tuesday, 18 August 2015
Mal de debarquement Syndrome - Cathy Helowicz Interview
A great interview with Cathy Helowicz discussing her work with the Mal de debarquement Syndrome foundation and what it's like to live with the constant symptoms this condition causes. Well worth a listen for anyone living with chronic imbalance and dizziness.
Swimmyhead
Swimmyhead
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