Patrick Stewart

Hi Guys

Actor Patrick Stewart has been suffering constant dizziness and vertigo for the past 8 months -

http://www.telegraph.co.uk/films/2017/11/16/patrick-stewart-reveals-treated-vertigo/?WT.mc_id=tmg_share_tw

Swimmyhead

Ugh

Hi Guys

In my last post I talked about feeling pretty decent overall for a constant month but unsurprisingly about 3 days later I was back feeling like absolute S*** and have been all day every day ever since. I won't rattle on about all of the symptoms and sensations I am experiencing as I am sure if your reading my blog you know exactly what I mean. It's all so devastating really isn't it. It's getting to the festive period now when everybody gathers, goes out and has fun with family and friends and I just know I'm barely going to leave the house. I do like to go for a walk during this time of year in the evening when I feel I can tolerate the uncomfortable sensations to see the Christmas lights people decorate the front of their houses with. It makes me feel festive. I can't believe it's going to be my 11th Christmas feeling this way. Anyway what can you do it's the hand I am dealt isn't it. I do hope to venture out Christmas eve with friends for a couple of hours but as usual I will have to wait until that very day to see how everything goes.

One last thing, I get to see an eye specialist in January to further investigate this dizzy hell. I don't know how I feel about it. Part of me is hopeful they can give me answers and a solution this time yet the other half of me is less optimistic. It's been so long living this way I wonder if I am ever getting out of it. From time to time my optimism about finding a cure and getting better takes a massive hit and I guess it's one of those times right now.

Take care guys

Swimmyhead

4 weeks

Hi Guys

I have had a very unusual 4 weeks. Dare I say the dizziness has been manageable for 4 straight weeks now. No real ups and downs intensity wise which is odd. There appears to be a consistency to the level of dizziness I am currently experiencing. Yes I wake up dizzy and go to bed dizzy but the dizziness remains pretty much at a constant (lesser) level all day long. If you have read my earlier posts or know a little about about my last ten years you will be aware that this simply isn't my usual daily experience. Days normally start off bad then gradually get worse as the evening sets in. Perhaps I will get a couple of days here or there or maybe a few random hours when symptoms lessen but for no real significant time period. Four weeks straight is the longest period in over 10 years. I'm feeling more optimistic of course and hoping that maybe I have finally turned a corner ( I have said this before I know). It's weird because I don't like to mention it since I don't want to jinx myself but I think it's worth mentioning after the hell that I have been through and for any of you guys out there who have been dealing with an insane level of disorientation and dizziness day after day, year after year with no hope in sight. Anyway who knows how it's all going to turn out. I will just have to wait and see.

The only thing that has changed in my life is that I am no longer taking any medication after several years of doing so. Coincidence? I don't know.

Other news I have is that I am finally being referred back to an ophthalmologist once again to get those abnormal eye movements of mine further investigated. I just pray they examine me fully. It's taken absolutely ages to move forward in this particular direction but I should have some news in the coming months.I will let you know if my peepers are causing or contributing to the dizziness I experience and tell you of any possible solutions suggested.

I mentioned in my last post that I was experimenting with magnesium. After 3 months of doing so I can say that I didn't feel any benefits. Doesn't mean any of you guys shouldn't try it though since it works for some.

So there you have it.....keep strong guys

Swimmyhead

Off of all Medication

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

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

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

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