Dizzy and Disoriented - Great article

Hi guys

This is a great article written by a guy called Brian Platzer, 35 who has suffered constant chronic vertigo that started back in 2010. He describes his life living with the condition and the various medication he has tried since being diagnosed with vestibular migraine. I am sure many of you will relate as do I. Whats's brilliant about the article is that not only does Brian provide great insight and information but there are 200+ user comments all of which seem to be left by fellow vertigo sufferers. They offer advice and insight into treatments and medications that did or didn't work. Ill be taking notes for my next doctors visit.

It's funny in my last post just a few hours ago I was doubting my migraine diagnoses but after reading this article and the comments left by users maybe my doc is on the right track. Read it and you might stumble upon a titbit of information that may help you.

Link: http://well.blogs.nytimes.com/2016/06/13/dizzy-and-disoriented-with-no-cure-in-sight-2/?_r=0

Swimmyhead

Vestibular Migraine???

Hi Guys

If you have read my last post a few weeks ago you will know that I am currently increasing my dosage of Gabapentin from 600mg to 1800mg. I am in my second week at 1500mg and next week will be upping the dose to 1800mg and then it's back to see the doctor. I wish I could tell you guys that I have seen some huge improvement but truthfully I have not felt any benefit whatsoever. In fact I feel worse. I am taking these medications because it's thought I have vestibular migraine and so Gabapentin is used as a migraine preventative but increasing the dosage has given me more mild headaches and the heaviness and fullness in my skull that I always ramble on about is in overdrive. Once I hit the 1200mg mark my head became so sensitive to any little movement I make. I mean it's always sensitive to movement but it seems that I am back to feeling the way I did years ago. The head pressure is full on at all times increasing every other symptom have. Turning my head and bending down or looking up is met with that heavy pulling and pushing sensation. The unsteadiness whilst walking or simply standing still has increased yet again. The sensation of the floor sliding beneath me or lifting me up and down is relentless and my vision issues such as the foggy, static like haze I see the world through is heightened as have the other vision problems like tracking motion making me feel like I am falling and the visual sway of the environment even more pronounced. I won't even begin on the lethargy.

I have considered decreasing my dosage back down to 600mg which I had been taking for nearly 4 years but I am so close to reaching the maximum dosage that I feel I must continue. At least then I will know with absolute certainty that this is not the drug for me ( I guess I know this already). I don't want to look back with a "what if" I had just went a little further.

So there you go guys no luck I'm afraid. It is a huge disappointment for me. I truly hoped that a higher dosage would be beneficial but sadly not. I have always felt like my vestibular migraine diagnoses was not quite right. After all my dizziness/vertigo condition is 24/7 from the moment I open my eyes to the moment I go to sleep. I have lived this altered and limited life for over 9 years now day in day out. How can a migraine last 9 years? I never experienced headaches my whole life before the vertigo attack that left me this way. The fact this migraine treatment has done absolutely nothing for me makes me further doubt my vestibular migraine diagnoses. Not to mention I followed a strict migraine diet for years with no improvement. I am a little lost to say the least.

My doctor said that there are other medications to try so it looks like that is the way forward for now but honestly I think It's time to wipe the slate clean and start over again. Surely it's time to re evaluate my situation. Since 2007 and 2016 I have had only a few standard vestibular tests and they were way back in 2009. I have been left to deal with this serious condition  for nearly a decade day after day with no real help at all. What do I do?

Swimmyhead

9 Years Ago Today

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

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

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

Swimmyhead

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.

Swimmyhead

University of Bradford - Dizziness Study- Volunteers needed

University of Bradford (Uk) are looking for volunteers for a new study on dizziness. Not sure what the details are but if your interested just click the link above or the picture to the left and it will take you to their twitter post with a link to a questionnaire.

Swimmyhead