Topiramate

Hi Guys

Its December already. Time just keeps ticking away doesn't it. Sorry I have been rather quite this past 2 months but I really have had nothing to report.No major changes in my dizziness and vertigo. Still feeling the same old on a daily basis. Perhaps a little worse for the past couple of weeks. More frequent headaches. Anyway expect more insight into my dizzy existence starting next week as I finally stop my Gabapentin medication after 4.5 years. Instead I am going to be trying a medication called Topiramate along side my Nortriptyline. This changeover has seemed to take forever in part because I have been nervous to reduce the Gabapentin in fear of side effects and worsening of my vertigo but I am down to 300mg a day and have been for the last month. Next week I stop it and start 25mg of Topiramate a day and then increase that dosage to 50mg daily the following week. I am nervous and excited,optimistic and pessimistic about the whole thing.Who knows maybe it'll be a game changer. The idea is to start on a low dosage and then increase to maximum dosage overtime,whatever that is?
So expect more of me and my dizzy journey these following weeks and months as I start this new treatment.

UPDATE: I have not started the Topiramate(Topamax) yet. I am going to wait till after Christmas. I just do not want any new side effects over the festive period. I will be back. Merry Christmas guys

Keep pushing on guys

Swimmyhead

Better diagnosis, treatment and patient care PETITION for vestibular disorders

Here is a petition you can SIGN for changes to be made in the current healthcare system regarding better diagnosis, better treatment and better patient care for those effected by vestibular disorders worldwide. Click the link above or picture below for more information and/or to sign the petition.

Swimmyhead

The Dizzy journey continues.....

Hi guys

I thought it was time to check in and let you know whats been happening. As some of you know for the last 3-4 months I have bee gradually increasing the dose of my Gabapentin medication that I take for vestibular migraine from my usual 600mg all the way to 1800mg. I finally reached the 1800mg mark about 4 or5 weeks ago and I'm afraid to say it made no difference to my balance and dizziness. So I went back to the doctors a couple of weeks back and he advised me to come back down gradually to 600mg and then to visit him again for a change of plan. Its all taking longer than I initially assumed but there you go.

There was one thing my doctor said that concerned me and that was how reducing gabapentin too quickly may cause seizures. SEIZURES what the hell. So I want to reduce the dosage slowly since I have been on the medication a little over 4 years. I am sure it won't happen but there is a little worry in the back of my mind. Anyway I am currently back down to 900mg which I will stay on for the next 3 weeks or so, I just hope I am not reducing too fast.

All in all it's been a rough 3-4 months symptom wise because of the increasing and decreasing of this medication. My body hasn't liked it one bit but it was worth a shot wasn't it?

So the dizzy journey continues.................

Swimmyhead

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

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