Hi guys
It is 9 years ago today that I woke up to that spinning vertigo attack that basically changed my life. What the hell happened?
This past month has been more intense and I'm still very dizzy and off balance. Yesterday I increased my dosage of Gabapentin to 1200mg and will stay at this dosage for 2 weeks then I will increase it to 1500mg. I have not yet felt any positive effects since increasing the dosage from 600mg to 900mg but who knows maybe a miracle will occur the higher I go. Fingers and toes crossed.
Take care guys
Swimmyhead
Wednesday, 25 May 2016
Sunday, 15 May 2016
Extremely Dizzy
Hi Guys
I have been feeling extremely dizzy this past 3-4 weeks and that constant heavy and foggy head is making all symptoms worse. I am also waking up every morning feeling exhausted. I open my eyes and all I want to do is go back to sleep because my body feels so fatigued. I sleep for about 6-7 hours a night but it doesn't stop the lethargy. If the head pressure would just calm a little then usually my other symptoms such as balance and vision tracking etc will improve somewhat.
I have begun experimenting with the dosage of one of my current medications (Gabapentin). I have been taking this medication at the same dosage for the last 4 years but my new doctor has told me that it's about time we try something new. He has asked me to increase the dosage from my current 600mg a day to 1800mg a day(max dosage) over the next several weeks then to go back and see him. He said that if we reach maximum dosage and there still isn't any improvement then it's time to stop taking it and try something different. No point in flogging a dead horse. I think he said I could try a medication called toprimate but I am not absolutely certain. Anyway, I started upping the dose last week and am now taking 900mg at this moment. I have felt no change as of yet. I'm just glad I have found a doctor finally willing to experiment and not just send me on my way leaving me lost.
I am excited but also nervous about increasing the dosage because of possible side effects but it's a chance I have to take. It also scares me a little the thought of having to stop taking my familiar medication if the maximum dosage does not help ( I'm praying it will,imagine that). I have been taking these medications for 4 years and have had a small improvement of sorts, but they have not cured me or given me any great relief but still the idea of stopping and trying a new drug with it's new possible side effects and non guarantee of working is a touch concerning.
Who knows maybe the increase will provide a more therapeutic effect and be the answer to my prayers. Two months from now I might be dizzy/vertigo free performing cartwheels of joy and feeling alive for the first time in 9 years. That truly would be something. Ill keep you guys updated.
Swimmyhead
I have been feeling extremely dizzy this past 3-4 weeks and that constant heavy and foggy head is making all symptoms worse. I am also waking up every morning feeling exhausted. I open my eyes and all I want to do is go back to sleep because my body feels so fatigued. I sleep for about 6-7 hours a night but it doesn't stop the lethargy. If the head pressure would just calm a little then usually my other symptoms such as balance and vision tracking etc will improve somewhat.
I have begun experimenting with the dosage of one of my current medications (Gabapentin). I have been taking this medication at the same dosage for the last 4 years but my new doctor has told me that it's about time we try something new. He has asked me to increase the dosage from my current 600mg a day to 1800mg a day(max dosage) over the next several weeks then to go back and see him. He said that if we reach maximum dosage and there still isn't any improvement then it's time to stop taking it and try something different. No point in flogging a dead horse. I think he said I could try a medication called toprimate but I am not absolutely certain. Anyway, I started upping the dose last week and am now taking 900mg at this moment. I have felt no change as of yet. I'm just glad I have found a doctor finally willing to experiment and not just send me on my way leaving me lost.
I am excited but also nervous about increasing the dosage because of possible side effects but it's a chance I have to take. It also scares me a little the thought of having to stop taking my familiar medication if the maximum dosage does not help ( I'm praying it will,imagine that). I have been taking these medications for 4 years and have had a small improvement of sorts, but they have not cured me or given me any great relief but still the idea of stopping and trying a new drug with it's new possible side effects and non guarantee of working is a touch concerning.
Who knows maybe the increase will provide a more therapeutic effect and be the answer to my prayers. Two months from now I might be dizzy/vertigo free performing cartwheels of joy and feeling alive for the first time in 9 years. That truly would be something. Ill keep you guys updated.
Swimmyhead
Wednesday, 11 May 2016
Brave Woman, aged 23, Battling incurable condition Ehlers Danlos Syndrome
Hi guys
I wanted to share a story that I have just come across about a young woman named Seanin who is only 23 years of age and is battling a very serious condition known as Ehlers Danlos Syndrome. She lives in the UK but the treatment she needs can only be carried out in the USA. She does suffer with migraines and dizziness but I guess these symptoms pale in comparison to the pain and other symptoms she has to deal with. Her family are reaching out to people to join the Fight on Campaign for Seanin in the hope they can help with fundraising efforts and new ideas. Below are links her full story and to her Fight on Campaign profile. I truly hope she gets all the help she needs. Life can be so cruel.
Full Story - http://bit.ly/1Tb5G5A
Fight On Campaign - http://bit.ly/24LArmH
I wanted to share a story that I have just come across about a young woman named Seanin who is only 23 years of age and is battling a very serious condition known as Ehlers Danlos Syndrome. She lives in the UK but the treatment she needs can only be carried out in the USA. She does suffer with migraines and dizziness but I guess these symptoms pale in comparison to the pain and other symptoms she has to deal with. Her family are reaching out to people to join the Fight on Campaign for Seanin in the hope they can help with fundraising efforts and new ideas. Below are links her full story and to her Fight on Campaign profile. I truly hope she gets all the help she needs. Life can be so cruel.
Full Story - http://bit.ly/1Tb5G5A
Fight On Campaign - http://bit.ly/24LArmH
Swimmyhead
Wednesday, 20 April 2016
Must Watch - BIAMI Lecture - Dr Debby Feinberg - Dr Mark Rosner - Vertical Heterophoria
If you have been experiencing dizziness and balance issues for a length of time and vestibular rehabilitation or medications have not worked then maybe a binocular vision disorder such as vertical heterophoria is the culprit. Here is a very insightful lecture by Dr Debby Feinberg about the symptoms and treatment of vertical heterophoria. If you are like me and are a long term sufferer of dizziness and have headaches,problems reading,difficulty tracking motion,balance issues and/or feel disorientated then it's a must watch. Watch part 4 of the lecture to see Dr Mark Rosner provide further insight into vertical heterophoria.
Dr Debby Feinberg and Dr Mark Rosner have used their expertise in this field to help thousands of people complaining of such life altering symptoms.
Dr Debby Feinberg and Dr Mark Rosner have used their expertise in this field to help thousands of people complaining of such life altering symptoms.
Swimmyhead
Monday, 4 April 2016
University of Bradford - Dizziness Study- Volunteers needed
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Swimmyhead
Friday, 5 February 2016
Hi guys
It's been a while since I last posted so its time to share with you whats going on in my dizzy world. I wish I could tell you some positive news about how I've finally have found a cure but that will have to wait.
I have been taking betahistine(Serc) these past two weeks and was excited to try it since I have read about other vertigo sufferers success with this medication. It has done nothing for me unfortunately. Such a disappointment as I was hoping that it would at least mask my symptoms somewhat considering it's an anti vertigo drug and my main problem is vertigo. At least now I know that it isn't for me and I can move on and seek other alternative anti vertigo medication to try.
I also saw a new GP 5 weeks ago who also specializes in migraine. He was a lovely chap who listened to my history and seemed very keen in my case. We talked about my current medications and how he wanted to try me on different medications and that he will get me better. I left the office feeling optimistic that this man understood my dilemma and that the next time I would see him a plan of action would commence.
That next time was today. I may as well have been talking to a complete stranger. He opened with "How can I help you"I was like WHAT!!!. He had totally forgotten our first interaction. I had to then repeat my story all over again,discuss my medications all over again, have in office neurological examination (for the hundredth time) all over again. Its so tiring.
I understand that doctors are busy and have to deal with hundreds of different faces and health issues everyday but having to tell the same story to different doctors,specialists,friends,family for 8.5 years over and over and over again is just tedious,frustrating and completely disheartening. All I want is someone to actually listen to me and take my life altering balance disorder seriously. I don't need any more in-office neurological exams,What I need are different medications to try. If one does not work try another. If that does not work try another, if that combination of medication does not work then try another combination. I am open and willing to try anything. I have only ever been given two medications(my current meds) in the best part of a decade.
The good news is he wants to see me again and is willing to try different medications( Hmm, I have been promised this before) and refer me to another specialist in the future. So guys the vertigo ridden journey continues.
Swimmyhead
It's been a while since I last posted so its time to share with you whats going on in my dizzy world. I wish I could tell you some positive news about how I've finally have found a cure but that will have to wait.
I have been taking betahistine(Serc) these past two weeks and was excited to try it since I have read about other vertigo sufferers success with this medication. It has done nothing for me unfortunately. Such a disappointment as I was hoping that it would at least mask my symptoms somewhat considering it's an anti vertigo drug and my main problem is vertigo. At least now I know that it isn't for me and I can move on and seek other alternative anti vertigo medication to try.
I also saw a new GP 5 weeks ago who also specializes in migraine. He was a lovely chap who listened to my history and seemed very keen in my case. We talked about my current medications and how he wanted to try me on different medications and that he will get me better. I left the office feeling optimistic that this man understood my dilemma and that the next time I would see him a plan of action would commence.
That next time was today. I may as well have been talking to a complete stranger. He opened with "How can I help you"I was like WHAT!!!. He had totally forgotten our first interaction. I had to then repeat my story all over again,discuss my medications all over again, have in office neurological examination (for the hundredth time) all over again. Its so tiring.
I understand that doctors are busy and have to deal with hundreds of different faces and health issues everyday but having to tell the same story to different doctors,specialists,friends,family for 8.5 years over and over and over again is just tedious,frustrating and completely disheartening. All I want is someone to actually listen to me and take my life altering balance disorder seriously. I don't need any more in-office neurological exams,What I need are different medications to try. If one does not work try another. If that does not work try another, if that combination of medication does not work then try another combination. I am open and willing to try anything. I have only ever been given two medications(my current meds) in the best part of a decade.
The good news is he wants to see me again and is willing to try different medications( Hmm, I have been promised this before) and refer me to another specialist in the future. So guys the vertigo ridden journey continues.
Swimmyhead
Tuesday, 29 December 2015
Christmas shenanigans
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
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
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