Hi guys
After several years of taking medication daily for my vertigo and balance problem I am happy to say I have completely stopped all forms of medication (for the time being anyway). Over the years I have been given a few different anti migraine meds in order treat suspected chronic vestibular migraine. The drugs I have tried are Serc, Amitriptyline , Gabapentin, Topamax and Nortriptyline.
I went along with the treatments since I needed help and hoped these drugs would cure me of this condition. If you have read my blog or website you will know that all treatments have been unsuccessful. I never got any relief from any of the medications but still I continued popping the pills hoping it was just a matter of time before there magic would kick in and work.
Perhaps I felt some benefit back in 2012 when I was given a combination of anti migraine medications but nothing to jump for joy about. I still continued to experience some of the most disabling dizziness I have ever had whilst taking these drugs. I often wondered when I was about to swallow my daily pills "why on earth I'm taking them".
After being nervous about stopping I am glad to say I feel absolutely no different, dare I say a little better. Either I have the wrong diagnoses (I think it's likely) or those particular meds are not the ones for me. I have not tried that many in all honesty. Five different drugs in a total of 10 years (not a lot really is it). I'm still open to trying new things but for now I think it's worth giving my body a rest from the chemicals. Since they did no good for me anyway.
I was praying I would not go back to square on once coming off of them and surprisingly I have not. So far anyway. For the last several days I would say I'm somewhat steadier and clearer. Coincidence? I don't know.
I want to say that for the last 4 weeks I have been supplementing with 100% chelated magnesium. 100mg - 150mg a day. The reason for this is because I read about a guy who felt dizzy and had balance issues just like me and after trying different medications with no luck was told to try magnesium. Long story short ....... he did and never looked back. It sounds to good to be true I know but it's worth looking into isn't it. Just a word of warning, if you intend to take magnesium then it's best to mention it to your doctor as too much can cause stomach issues.
Here is a link to his story: http://www.mymagnesiumdeficiency.info/magnesium-dizziness/
He talks about the different types of magnesium and the brands that work best for him. I have started taking the very same product called Doctors best 100% chelated magnesium.
Here is a link to that product: Doctors-Best-Absorption-Chelated-Magnesium
So I am going to continue taking the magnesium tablets but for now give my body a rest from the prescribed medications.
In a couple of weeks I am going back to see my doctor and will be looking for answers not related to vestibular migraine.
keep battling on guys
Swimmyhead
Tuesday, 25 July 2017
Tuesday, 9 May 2017
No Breakthrough yet
Hi guys
I hadn't realised it had been so long since I let you know how things were going with the topiramate that I have been taking for my dizziness and vertigo. It's been a little over 4 months now that I have been taking it slowly increasing the dosage to 125mg daily and can honestly say I have not really had any breakthrough yet. I will say that for the last three days I am having a steadier, clearer time of things but if you have read my blog and know a little of my experience and my vertigo hell you will know from time to time I get these random moments or days were my symptoms become less intense before they kick off again. So I am not currently thinking it's the topiramate that has caused this steadier time as for last 4 months I have been pretty much the same heavy headed, unbalanced swimmyhead I always am.
I was doing very well as far as having no side effects from the topiramate that was until I hit 125 mg. About a week in I noticed my sense of taste and smell completely vanished and has not come back. I have already lost my sense of balance I don't fancy losing another two senses. I have a trip to the doctors anyway next week so that will be discussed. Maybe it's time to try something else. In fact I personally feel it's time to head down a completely different route, away from the vestibular migraine diagnoses. There are many reasons as to why I am feeling this way. I will leave that for another post. There is lots I need to talk about with him. It's 10 years this month that this all happened to me. I don't want to do another 10.
Take care guys
Swimmyhead
I hadn't realised it had been so long since I let you know how things were going with the topiramate that I have been taking for my dizziness and vertigo. It's been a little over 4 months now that I have been taking it slowly increasing the dosage to 125mg daily and can honestly say I have not really had any breakthrough yet. I will say that for the last three days I am having a steadier, clearer time of things but if you have read my blog and know a little of my experience and my vertigo hell you will know from time to time I get these random moments or days were my symptoms become less intense before they kick off again. So I am not currently thinking it's the topiramate that has caused this steadier time as for last 4 months I have been pretty much the same heavy headed, unbalanced swimmyhead I always am.
I was doing very well as far as having no side effects from the topiramate that was until I hit 125 mg. About a week in I noticed my sense of taste and smell completely vanished and has not come back. I have already lost my sense of balance I don't fancy losing another two senses. I have a trip to the doctors anyway next week so that will be discussed. Maybe it's time to try something else. In fact I personally feel it's time to head down a completely different route, away from the vestibular migraine diagnoses. There are many reasons as to why I am feeling this way. I will leave that for another post. There is lots I need to talk about with him. It's 10 years this month that this all happened to me. I don't want to do another 10.
Take care guys
Swimmyhead
Tuesday, 31 January 2017
50mg Topiramate (Topamax)
Hi Guys
Just a quick update regarding my new medication. I have doubled my dose of topiramate and am now taking 50mg daily. I have to say that I have experienced a worsening of symptoms since doing so but this I am told is to be expected and hopefully will not last much longer. Apart from the unwanted increase in my usual dizziness and balance related symptoms I am glad to report of no other new side effects appearing. I am still optimistic after reading many positive stories about this treatment and it's effectiveness in treating chronic vestibular migraine so am willing to put up with the increased symptoms. I will be visiting my doctor next week to update him and imagine I will be continuing this treatment for the foreseeable future.
Swimmyhead
Just a quick update regarding my new medication. I have doubled my dose of topiramate and am now taking 50mg daily. I have to say that I have experienced a worsening of symptoms since doing so but this I am told is to be expected and hopefully will not last much longer. Apart from the unwanted increase in my usual dizziness and balance related symptoms I am glad to report of no other new side effects appearing. I am still optimistic after reading many positive stories about this treatment and it's effectiveness in treating chronic vestibular migraine so am willing to put up with the increased symptoms. I will be visiting my doctor next week to update him and imagine I will be continuing this treatment for the foreseeable future.
Swimmyhead
Saturday, 7 January 2017
Started My New Medication
Hi Guys
I have begun my new medication Topiramate also known as Topamax. I took my very first 25mg tablet this past Monday meaning I am six days in. Thankfully I do not feel any negative side effects as of yet. This coming Monday I will be doubling the daily dose so who knows but so far everything is ok. I am finally off of the Gabapentin and luckily experienced no side effects even though I had been taking it daily for over 4.5 years. As some of you know I did take my time reducing the dosage and stopping so I guess that has helped and is a wise thing to do.So the plan is to try and increase the Topiramate over time whilst continuing to take it in combination with my nortriptyline daily.
I have to say I am a little concerned about the new drug because I did a Google search which one should never do and read some side effect horror stories but fortunately I also read some very inspiring success stories. People who had been chronically dizzy and off balance for years who eventually found relief using Topiramate (Topamax). I am trying to focus on those. By all accounts it's an effective drug but can be a little difficult to tolerate so dosage must be increased gradually overtime. I have read that it takes at least 3 months to start working once an effective dosage is attained. So I must discuss this with my doctor on my next visit. I want to do this properly, not too quickly and assume it doesn't work.
Overall I feel exactly the same as ever. No worse and no better. Still dizzy, full pressured head and swaying but it's only 6 days in and considering my body will be adapting to no more gabapentin and getting used to the new medication in my veins I would say that is alright with me.
I am praying I can be another Topiramate success story since 20017 will mark 10 years of living with this hellish balance disorder and I quite fancy a break.
Below is a link to a Topiramate (Topamax) success story. This person had been chronically ill with balance and dizziness issues for years all day every day like myself. This gives me hope and hopefully inspires you guys.
http://www.mvertigo.org/t/topamax-gave-me-my-life-back/7640
Keep fighting guys
Swimmyhead
I have begun my new medication Topiramate also known as Topamax. I took my very first 25mg tablet this past Monday meaning I am six days in. Thankfully I do not feel any negative side effects as of yet. This coming Monday I will be doubling the daily dose so who knows but so far everything is ok. I am finally off of the Gabapentin and luckily experienced no side effects even though I had been taking it daily for over 4.5 years. As some of you know I did take my time reducing the dosage and stopping so I guess that has helped and is a wise thing to do.So the plan is to try and increase the Topiramate over time whilst continuing to take it in combination with my nortriptyline daily.
I have to say I am a little concerned about the new drug because I did a Google search which one should never do and read some side effect horror stories but fortunately I also read some very inspiring success stories. People who had been chronically dizzy and off balance for years who eventually found relief using Topiramate (Topamax). I am trying to focus on those. By all accounts it's an effective drug but can be a little difficult to tolerate so dosage must be increased gradually overtime. I have read that it takes at least 3 months to start working once an effective dosage is attained. So I must discuss this with my doctor on my next visit. I want to do this properly, not too quickly and assume it doesn't work.
Overall I feel exactly the same as ever. No worse and no better. Still dizzy, full pressured head and swaying but it's only 6 days in and considering my body will be adapting to no more gabapentin and getting used to the new medication in my veins I would say that is alright with me.
I am praying I can be another Topiramate success story since 20017 will mark 10 years of living with this hellish balance disorder and I quite fancy a break.
Below is a link to a Topiramate (Topamax) success story. This person had been chronically ill with balance and dizziness issues for years all day every day like myself. This gives me hope and hopefully inspires you guys.
http://www.mvertigo.org/t/topamax-gave-me-my-life-back/7640
Keep fighting guys
Swimmyhead
Saturday, 3 December 2016
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
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
Thursday, 8 September 2016
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
Swimmyhead
Friday, 5 August 2016
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
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