Well You Don’t Look Sick!

How many of us with Menieres have heard that? Unless we are hugging the toilet and throwing up or trying to beat the vertigo into submission, then to some people we are not sick, we just get ‘dizzy’ occasionally. Or if we mention vertigo, people retort with ‘oh yes I get that sometimes if I’m up high’. Well you might get that vertiginous feeling but believe me, unless you suffer from Menieres or similar disorders, you really do not know what severe vertigo is. I had a real hard time convincing my manager and my husband that yes I was chronically ill and no, I didn’t know when the vertigo was going to hit or for how long.

How many of you feel ill every single day and do not know what it’s like to have a day where you feel normal like you did before this hit, but on the outside you look fine? I know I do. I constantly feel woolly headed, or mildly dizzy, or off balance, or the pressure is crippling, or the tinnitus is off the scale, or nauseous. You know what I mean! And it’s annoying, to put it mildly, when others don’t. I started pointing my husband and my manager to websites like menieres.org to find info. I showed them posts from my fellow sufferers on forums or on Facebook to show we do not make this sh*t up!

It took me a long time to realize that these symptoms are not going to go away so now I try really hard to ignore the symptoms and get on with my life. I have managed for the most part to tune out the tinnitus, unless it’s having a mad few hours. I just accept I’m going to feel dizzy and off so again just get on with it. I used to wallow in misery and not want to go anywhere or do anything in case the vertigo hit. But then someone said to me think of the worse that could happen and prepare for it. Have a plan. I used to travel with work so my plan was if it hit at the airport or during the journey, tell someone, ask them to find someone to help me and to put me somewhere quiet and eventually on the plane. I had barf bags and cleanups on me so was prepared that way too. Ironically the only time I got hit traveling was coming home from a vacation and fortunately it was only a mild attack, by that I mean the vertigo was bearable and only lasted 3 hours. By the time I got on the flight I was at that yuck, exhausted part that follows an attack.

I am lucky. The vertigo has stayed away for almost 5 years now. I don’t know why but that’s the nature of this disorder, it pleases itself. I still have all the other symptoms though but I can cope with those. Right now life is good and I just hope it stays that way. Never give up hope. I had very bad times with this from 1999 to 2009 and thought it would never end but it certainly got better. I lead an almost normal life. The cinema and rock concerts are a no go but other than that, I pretty much try to do what I did before I got sick with Menieres.

Cranial Osteopathy and Trigger Point Therapy

OK, so as promised, here is my second post, all about cranial osteopathy and trigger point therapy (which I totally forgot to mention in my initial blog!) and why I think they both  helped/help me. Again, the boring bit, these therapies may not help everyone so please don’t ‘yell’ at me if you try it and it doesn’t work – thank you 🙂

Going back to before I had Menieres, I had a horse and used to compete. One day she jumped a fence and I didn’t and I ended up whiplashing my neck. Back in 2004 when I was in the car accident, I sustained another whiplash then as well as a smashed head on my tricep in my left arm. During the course of pursuing the medical claim, I asked the doctor if my worsening vertigo could be as a result of the whiplash. He said no given that I had been unofficially diagnosed with Menieres. I took his word for it. However since both of those accidents I have suffered neck problems and continue to do so to some extent today.

 Part of the reason for seeking out the cranial osteopathy was because it helped a friend with her neck issues. I found a lovely lady based in Ascot in England. As I’ve mentioned previously CO involves some chiro moves like cracking the neck and doing manipulations to get displaced bones back in place. It also involved gentle, almost invisible manipulation of the head and face to get the cranial fluid moving. The treatment lasted about 40 minutes and afterwards I would feel quite lightheaded but the Menieres symptoms would be diminished (it helps sinus issues too!) and my hearing slightly better. I initially went every week and then once a month for maintenance. As I mentioned previously this helped lessen the vertigo and also helped with my ever-present neck pain and stiffness in my neck. So because of this, I do think that my neck issues are a contributor to my Menieres symptoms. I was hoping that I didn’t have Menieres and I would be cured once and for all but I still have all other symptoms like the fullness in the ear, dizzies, tinnitus and gradual hearing loss. My right ear is now probably 75% deaf.

 I then read about Trigger Point Therapy or TPT and decided to learn this technique for myself. This is not a complex therapy to do but it is quite complex to figure out where the trigger points are and it takes a bit of practice to get it right. It is based on pressure on trigger points which are all over the body, similar to acupressure. So, what is a trigger point? Trigger points, also known as trigger sites or muscle knots, are described as painful spots in skeletal muscle that are associated with palpable nodules in taut bands of muscle fibers. Unexplained pain frequently radiates from these points of local tenderness to broader areas, sometimes distant from the trigger point itself. Practitioners claim to have identified reliable referred pain patterns which associate pain in one location with trigger points elsewhere. Compression of a trigger point may elicit local tenderness, referred pain, or local twitch response. The idea of trigger point therapy is to break down these nodules which in turn, inexplicably to me, stops the pain in its tracks.

 If you press gently along the edge of the neck down to the shoulder and you feel a painful spot, that’s a trigger point. The therapy involves pressure on those sore points for a number of seconds until the pain level goes from a 7 to a 3 say and then you press even deeper, let me tell you it hurts if you find a good one, or a bunch in one spot! Eventually the pain stops and that’s when you have gotten rid of the trigger point. Sometimes you can even feel them like a pea if you have a bunch close together. Anyway this is what I use on myself to ease the everyday dizzies. I also stopped vertigo in it’s tracks twice with this before my long remission! I’m not going to go into how it’s done here as I don’t want to inadvertently cause anyone injury. So I would recommend that you buy this book if you are interested in learning more:- The Trigger Point Therapy Workbook by Clair Davies. There’s a whole series of them but I use the broad guide to self treatment. It’s also great for tennis elbow and headaches too! Alternately if you don’t want to do it on yourself pay a visit to a TPT therapist.

 There is also another chiropractic treatment that I tried last year called NUCCA which is readily available in the US but only on Harley St in the UK! I had high hopes for this treatment and was really excited to try it as I had heard excellent reports about it and how hearing was restored and symptoms totally banished. This technique involves manipulation of the atlas bone which lies just behind the ear. Sadly this method did nothing for me apart from level up my shoulders! I was really disappointed as I so wanted it to work. Wouldn’t you just love to feel 100% well again? I would!!

 So there you have it and right now I have a really bad sinus headache so once I finish typing this email, I shall be fiddling around at the back of my skull to find the trigger points and add some relief!

Menieres and Me

Welcome to the first post on my Menieres blog. Please feel free to direct family and friends here for enlightenment. This will be a fairly long one as I want to give my history and how I got it under control.
Let’s get the boring bit out of the way first! I am not a doctor, I have this disorder and all the information below comes from my own experience and research. Not all cases present or act the same so what has worked for me may not work for you.
First of all a bit about me. I’m British but live near Atlanta, GA, 50 yrs old (but act about 25!) and a cat and shoe freak! I love fast cars and cruising along in the sun on the back of my hubby’s Harley.
So, what is Menieres Disease (I prefer to call it a disorder, it sounds better than disease!!)? It is a debilitating, fairly rare inner ear condition that can present in a typical or atypical manner.
Typical Menieres has these four symptoms present:-
• ‘Fullness’ in one or more ears, ie the ear feels like it is blocked or has pressure.
• 24×7 tinnitus of varying frequency and pitch
• Gradual or immediate deafness in the affected ear(s)
• And the worst one of all, extreme bouts of vertigo lasting from as little as minutes to hours and hours.

Atypical Menieres may not have all the symptoms listed above, or may bring other things with it such as drop attacks or vertigo brought on by noise or bright lights. I am a textbook typical case but that said I consider that I have a ‘milder’ for want of a better word version than others. My ENT in the UK who is the UK leading authority on Menieres said you can see milder cases than others.

My first encounter with it was in 1999 when I had all the symptoms except for the vertigo. My right ear never felt right, the hearing was down and it was affected by the weather, I felt pressure in it a lot, had pain, tinnitus. I also felt off balance and ‘dizzy’ for want of a better word, although not a spinny dizzy or the kind when you are going to faint. My doctor was no help but my job entailed a lot of flying at that time and he grounded me thinking it was a middle ear issue! Not good, I loved my trips overseas.

Eventually I Googled my symptoms and found Menieres as part of that search. I remember thinking at the time thank god I don’t have that. Little did I know…..

Fast forward to Summer 2001 when I had my first vertigo attack. At the time I didn’t know that’s what it was, nor did I associate it with my other symptoms. I thought I had an ear infection. I wasn’t sick but I felt so rough. The vertigo eased after 4 hours and I was able to go back to bed but still felt ‘off’ the next day. Nothing happened for another 6 months or so when I got another attack. This time I had just drunk a large glass of wine and 2 vodkas so thought I was drunk (I’m a lightweight when it comes to drink!). By noon the next day I felt fine so thought yep, hangover etc. Gradually the vertigo attacks became more frequent though and by now I was thinking **** (insert favorite curse/swear words here!) this is Menieres. I was sent to see an ENT GP who was so cocky and horrible. He looked at me down his nose and said of course it’s Menieres, it’s obvious. How rude! He then sent me to see one of the most emminent Menieres specialists in the UK, a guy called Mr Chris Aldren. Before I went to see Mr Aldren, I documented a ‘War and Peace’ like epic with regard to my symptoms and attacks. He immediately said it looks like Menieres and we’ll send you for the tests (I will document those in a separate piece!). After the tests I went back to see him and he confirmed that I had what looked like Menieres, but he would not officially diagnose. He told me the reason for that is that there are other similar disorders that mimic Menieres and the only way to confirm 100% was to send him my head during a vertigo attack! Appealing as this sounds, it’s obviously not feasible! In addition, in the UK, if an official diagnosis is given, you are supposed to surrender your drivers license. Interestingly Mr Aldren’s view was that diet doesn’t necessarily affect Menieres and that is true for me. I have no food triggers so still eat and drink what I like.

Anyway, onward to 2004 when I was involved in a car accident. After this my symptoms seemed to increase in frequency and severity. I started to get vertigo attacks once a week and they lasted anywhere from 45 mins to 4 hours. When I get vertigo I can only sit and face a blank wall. If I lay down I know I will throw up. So far I have managed not to throw up during the vertigo but it’s been close. I usually also get diarrhoea too and have to crawl to the bathroom to take care of that which is no mean feat either! During an attack I tend to flick my eyes about too (not nystagmus) which I think also helps my brain cope with the spinning. My vertigo presents like the room is whooshing by and pictures seem to move around on walls. I also get pins and needles in my arms and legs and anxiety too so I try to do t’ai chi like arm movements and breathing exercises. Let me tell you, my cats think I have gone totally crazy when I do this! They give me very strange looks. My vertigo stops as quickly as it starts though. One minute the room is spinning, the next it’s like the lull after a storm and I can get up and move around. I usually then sleep as you tend to get exhausted because the brain is working to make sense of the world. For a few hours after an attack my tinnitus roars! But the day after I can usually hear better and my tinnitus is a lot quieter. The pressure goes too. One weird thing that happens to me is if I get vertigo come on in the car, I don’t notice until the car stops! The motion of the car relieves it.

Back in 2004 I was taking Serc but realized it wasn’t doing much so I decided to stop it and do some investigation myself into how to minimize this horrible thing. This took me over 5 years to finally find something that I believed worked to a point(or maybe I reached burn out, my hearing is totally shot in my right ear). I tried chiropractic (that made me even more dizzy), I tried some natural remedies that didn’t work. Eventually I tried cranial osteopathy. This is similar to chiro in some ways but also involves gentle manipulation around the face and head. This gradually brought down the vertigo attacks to one every 6 months, then a year, then two years. Today, May 2013, I have been vertigo free since May 2009. In addition to seeking help, I have also always tried to maintain a positive outlook and get on with my life. It’s hard and I know not possible for some of us. But although my balance is not the best (I regularly step back off step ladders!) I managed to pass my motorcycle test. I won’t get one as turning right is very wobbly for me. I also persevere with my beloved heels. I do yoga to maintain what balance I have and I still ride horses. I also travel extensively. I have suffered an attack at Boston airport which luckily was only a 2hr vertigo episode so by the time I got on the plane, I just had tinnitus louder than the engines! That was not a pleasant experience.

Now I am under no illusion that this will not come back and bite me at some point as I know people who have been vertigo free for 10 years or more, then it suddenly flares again. I still get the fullness, still have horrible tinnitus and am deaf in my right ear and there are still days when I get that ‘oh crap I’m going to get vertigo’ feeling. As y’all know, once you’ve been unfortunate enough to experience this, it doesn’t leave you that easily. But as long as I remain vertigo free I will continue to live my life to the maximum. Gosh I talk a lot don’t I? Well I hope this is useful as a first post. Next time I will talk about the cranial osteopathy in more detail and why I think it helped me in particular. Thank you for reading x