Thursday, 23 December 2010

Is your GP fit enough?

The duties of a doctor registered with the General Medical Council

Patients must be able to trust doctors with their lives and health. To justify that trust you must show respect for human life and you must:
  • Make the care of your patient your first concern
  • Protect and promote the health of patients and the public
  • Provide a good standard of practice and care
    • Keep your professional knowledge and skills up to date
    • Recognise and work within the limits of your competence
    • Work with colleagues in the ways that best serve patients' interests
  • Treat patients as individuals and respect their dignity
    • Treat patients politely and considerately
    • Respect patients' right to confidentiality
  • Work in partnership with patients
    • Listen to patients and respond to their concerns and preferences
    • Give patients the information they want or need in a way they can understand
    • Respect patients' right to reach decisions with you about their treatment and care
    • Support patients in caring for themselves to improve and maintain their health 
  • Be honest and open and act with integrity
    • Act without delay if you have good reason to believe that you or a colleague may be putting patients at risk
    • Never discriminate unfairly against patients or colleagues
    • Never abuse your patients' trust in you or the public's trust in the profession.
You are personally accountable for your professional practice and must always be prepared to justify your decisions and actions.

Vestibular Migraine Today

I know what caused it and was able to treat it, it was a monster though. Similar episodes in the past had me in A&E, doomed with the lack of knowledge and care from the Doctors. What can they do?

Once the Migraine starts to play with the Vestibular System it is very difficult to keep control. Your sense of balance starts to go, you feel eveything including your mind spinning out of control. Vestibular Migraines are not the same as a Migraine. A Migraine cannot be stopped, a Vestibular Associated Migraine is not the same and can. I spent many 18 months in alot of discomfort before I worked this out.

It took me another 18 months before I worked out why the medications I used and various other holistic therapries worked and how to use them most effectively. I am not talking about the stuff Neurologists give out which make you lose the will to live. I am talking about drugs that treat the source of the problem whilst allowing you a LIFE.

I cannot publish this sort of advice since it would be putting people at risk. I will however be making as much medical information available as I can and pushing the right people so others can benefit. Maybe I am not the only one here with some personal success stories, please get in touch if you have had positive results from thinking outside the box.

Tuesday, 21 December 2010

Demosthena's Mord Sith Diary of Pain

  • Nerve Blocking Injections: During the first ten injections I sat on the operating table edge as a needle with a nerve blocking agent was injected into different parts of my back. The pain consultant asked me if I was going to pass out, I said, not yet. 10 Deep tissue injections into the shoulder and back. After these I had to lie down so they inject into muscle around the spine Cortisone using an x-ray so they don't puncture the Spinal Cord. I have had this 3 times, you don't get used to it.
  • Workstation Migraines: These develop if you continue to work at a PC without the right treatment. If you persist with VRT then you will soon get there. Your neck starts to develop muscle spasms which interfere start to trigger referred pain at the front of the head. In the last 3 years I have had a migraine during every work day (~600).
  • Tachycardia: Several times a year until I started getting the right treatment I would end up in A/E with heart rates above 200 bpm. When you heart is moving at this speed you experience anxiety of which there is no equal.
  • C1 Vertebrae manipulation: Another Medically approved but dangerous way to treat potential causes of dizziness. Was hospitalised after a treatment to the Atlas due to extreme dizziness, the manipulation caused me to lose consciousness to the point of blacking out.

Monday, 20 December 2010

Vestibular Rehabilitation Therapy and beyond

If you have classic problems of a imbalance (true Vertigo) then VRT is a very obvious way to train your Vestibular System. Most exercises are about 70 years old and based on Cawthorne-Cooksey exercises. (I know a VRT Physio in Harley Street charging a fortune for this).

For most other Dizziness affected people there is a problem, they do not work. Over the last 3 years I have worked outr treatments that work really well through trial and error. Before I bang on about why these work which could take weeks I thought I might as well summarise them for your benefit:

  1. Bikram Yoga is simply amazing (just discovered it cannot say enough about it). It is tough and not for everyone.
  2. Acupuncture is essential but short lasting. Need to do weekly but it has an amazing impact. Much better than any pain medication medication.
  3. Cross training is the backbone of my pain control management. You can get a cross-trainer second hand quite cheaply.  
  4. Shiatsu Massage provides similar relief to acunpuncture.
  5. Meditation is very difficult, but very rewarding if you persist with it.
  6. Trigger Point Physio Massage (this needs a section in itself, this is for those who are advanced in their assessment of their disorder).
If you are Dizzy, THESE WILL HELP. I know what it is like to train hard with the room spinning, nausea, sore eyes and tension headaches, but once you are finished you always feel better and it does get easier.

P.S I have LOTs to add so will continue to edit this blogpost so do keep coming back to it. I will be explaining why these are so successful in treating non Vestibular Dizziness.



Temporo Mandibular Joint Disorder and Dizziness

I am going to jump in and start talking about the relationship between Temporo Mandibular Joint Disorder (TMJ) and Dizziness. Many people who have Dizziness and start to research the internet always come up with overlaps between dizziness and another physical complaint. Temporo Mandibular Joint Disorder (TMJ) is one, Bruxism is another. The sort of stuff you read about sounds like this;

Ear pain: About 50% of patients with a TMJ disorder notice ear pain and do not have signs of ear infection. The ear pain is usually described as being in front of or below the ear. Often, patients are treated multiple times for a presumed ear infection, which can often be distinguished from TMJ disorder by an associated hearing loss or ear drainage (which would be expected if there really was an ear infection). Because ear pain occurs so commonly, ear specialists are frequently called on to make the diagnosis of a TMJ disorder.

Sounds: Grinding, crunching, or popping sounds, medically termed crepitus, are common for patients with a TMJ disorder. These sounds may or may not be accompanied by increased pain.

Dizziness: Of patients with a TMJ disorder, 40% report a vague sense of dizziness or imbalance (usually not a spinning type vertigo). The cause of this type of dizziness is not well understood.
Fullness of the ear: About 33% of patients with a TMJ disorder describe muffled, clogged, or full ears. They may notice ear fullness and pain during airplane takeoffs and landings. These symptoms are usually caused by eustachian-tube dysfunction, the structure responsible for the regulation of pressure in the middle ear. It is thought that patients with TMJ disorders have hyperactivity (spasms) of the muscles responsible for regulating the opening and closing of the eustachian tube.

Ringing in the ear (tinnitus): For unknown reasons, 33% of patients with a TMJ disorder experience noise or ringing in the ears (tinnitus). Of those patients, half will have resolution of their tinnitus after successful treatment of their TMJ disorder.

For someone with Vestibular Presenation this is too close to what might be a solution not to considered, especially after months maybe years of misery. I have seen about 3 Maxillofacial Surgeons (maybe even 4). I have a CT Scan and a medical report which says, yes I have TMJ.

So is there a link? Yes, but TMJ whilst common in people with Dizziness is not the trigger of the symptoms. I can assure you of this based after I personally harrassed some of the top Maxillofacial Consultants in London.  I will develop the reasoning behind this statement later since I want to keep the developing of the ideas behind dizziness inline with how I developed my understanding of the disorder. The key point made share by each consultant is that TMJ is generally caused my pyschological triggers and that treating the underlying pyschological component would stop the development of the TMJ presentation (in me). Everyone ruled out surgery, instead opting for splints and diet changes (soft food) combined with stress management.

This is important for 2 reasons:

  1. It establishes a link between a disorder closely associated with dizziness being triggered by  pyschological factors. TMJ is not the source of dizziness, TMJ and Dizziness are simply triggered by similar pyschological factors and are therefore common in people who have in those with pyschological presentations.
  2. Plenty of Maxillofacial establishments which will profess to help those with Vestibular Symptoms because of the known but yet unexplained associated symptoms between the TMJ and Dizziness. (You will start to see the important interference between Money and Medicine Opinion as I keep blogging and how it is so destructive in helping those get treatment for dizziness).

  2. Medical Report

Right TMJ- Closed

The condylar head is stightly irregular with a veqy early osteophyte formation in the most antaior surface.The disc is situated in the normal position betwcen the condylar hear and the glenoid fossa. The glenoid fossa and articular eminence appear normal. No evidence of joint effusion noted.

Right TMI - Open

There is a good range of movement with the disc remaining in the normal position.

Left TMJ- Closed
Similar appearamce of the condylar head is noted where there is a very early ostcophyte formation. The disc is tcthered antcriorly but also rnedially displaced.

Left TMJ- Open

There is a good range of movement and the disc returns to a normal position. This is anterior and medial displacement of the disc with reduction.


Anterior but also medial disc displacement of the left temporomandibular joint with reduction with noevidence of joint effiusion bilateralty.

Link between Migraine Associated Vertigo and Psychological triggers

Taken from my own medical report by a Consultant Neuro-tologist

She told me she felt as if there is a trigger in her brain with a simultaneous onset of her abdominal symptoms. She told me that she had undergone several endoscopies and several biopsies without a final diagnostic formulation. She continues to experience episodic symptoms of headache, nausea and dizziness followed by a sensation of feeling “numb”. I asked her what she meant by this. She described an emotional blunting and off balance sensation. With these symptoms she often has discomfort deep in both ears. She has a background sensation of imbalance which compromises her ability to exercise. She has find that many exercises trigger her nausea and headache. She has a documented peripheral vestibular lesion and he has been prescribed the vestibular rehabilitation exercised by VRT Physio, but she probably does not practise these as often as she should. She spends much of her time working with a computer running her business. She has found that using computers for long periods aggravates her symptoms.

This complex medical history raises in the differential diagnosis a migrainous and autoimmune association. The visuo-vestibular projections to the hippocampus, Papez circuit and neighbouring areas would account for the overlap between the vestibular and psychological aspects of the presentation and the response to xxxxx
This NT will be referred from now on as Dr Wonderful
This for me was a very important step towards understanding the condition and validating some of the ways I was treating my MAV without realising it. I will refer back over and over again to this since it is pivotal in later understanding the triggers and how the link back to Vestibular Problems.

The VRT part is also important since I at the time after spending months with no improvement with VRT had started to develop better treatments through trial and error by focussing on the psychological triggers prior to this report.

Unfortunately after seeing a member of desperate to understand the link between anxiety and dizziness  and obviously needing some support and witnessing the tired drivel from the admins of the site I posted the medical evidence above. The admin deleted the post but still left her own "opinion" unchallenged. Their "expert" then posted asking what evidence do I have to demonstrate a link between psychological conditions and dizziness. I am not sure how far the term expert extends, I can understand this I am sure anybody else could even without "medical training".

Unlike I am not going to offer medicine advice (since it is rarely the answer), but I will be posting many of the complimentary therapies which really help and how they work. If you are desperate and want to talk to someone then please just contact me through this blog. I can give you the names of real medical experts who I respect and admire for what they do to help people with this disorder. There is alot of mis-information on the web, there is also lots of useful information, my advice is to challenge everything but discount nothing. It was my persistence that paid of in the end because of the poor primary medical support I received.

This is not the full explanation, but merely an important relationship established. There are many more important interactions which I have understood as my experience of the disorder developed. The body is a system with many functions. You cannot have a problem with one part of the system and not impact it elsewhere. I will try and communicate my observations about these interactions later so you can maybe challenge whether you think it's nonsense or not. Please do since I like some lively debate. I will publish a comment no matter what the content as long as it's relevant and does not hurt anyone.

Final Rant about Dizzytimes (on this post): Why when a forum which has maybe thousands of posts querying the link between anxiety and dizziness do the moderators immediately discount a link between the Psychological triggers? Why do they then delete without consultation the first evidence of such a link? Why do they instead promote disorders instead which are unverifiable (medically documented as being so)?

Even More Evidence

CONCLUSIONS: Vestibular disease and psychiatric disorders are the most common causes of persistent dizziness in outpatients. In about 50% of patients with dizziness, more than one factor causes or aggravates symptoms. Life-threatening causes were rare, even in our elderly population.
Unifying theoryBoth vascular and neural influences cause migraines.
1.stress triggers changes in the brain2.these changes cause serotonin to be released
3.blood vessels constrict and dilate
4.chemicals including substance P ir
Comment: This unifying theory is similar to my own but mine varies due to the fact I believe a Vestibular Migraine is different from a Classic Migraine. More later...

Stress, anxiety, hypoglycemia, fluctuating estrogen, certain foods, smoking, and other factors can trigger migraine. Vertigo and imbalance secondary to migraine usually respond to the same treatment used for migraine headaches. Treatment of migraine includes eliminating from the diet substances known to trigger migraine attacks, such as chocolate, nuts, cheese, red wine, and other foods. Medications may also be prescribed.

I challenge the Dizzytimes Community Advisor to comment here and ask again what evidence do I have that Anxiety/Stress is a contributor to Dizziness.  Stress is the trigger, it took me a long time to understand what stress is at a neurological level, but given that my GP could not be bothered to read up about it I had no choice.

NB. I would strongly advise those with BPPV and Labyrinthitis diagnosis to consider whether Compensation Pain might just be Migraine Associated Vertigo (especially if you have had it for sometime).

Not a site I would recommend if you want help with a dizzy disorder. In a few days I have had my accounts blocked, my private messages intercepted and my posts deleted. Special interest forum communities can be really positive if run well, unfortunately those attracted to running such communities are usually middle aged control freaks with the intellect of a fruit fly, like this one. It seems that all it can offer is sympathy and the promotion of diagnosis which are not relevant.

This is an official message from the admin team of this site. We are very concerned about some of your posts. You have told a member in one of your replies about anxiety and inner ear disorders that you know what is wrong with them and can fix it and invited them to pm you for advice.

The wellbeing of our members is paramount and we cannot allow anyone with no medical or scientific qualifications to claim to know better than the medical world. Scientists have been studying the inner ear and dizziness for years and how you, after only 3 years of being dizzy can claim to know better than them is beyond us.

As Pam told you, this site is run by dizzy people for dizzy people and is about support and advice based on experience. you are welcome to post questions and give support but please refrain from making such claims as you have been.

If you continue in such a manner we will be forced to remove you as a member.
Listen, please take this as my leaving your community, I don't want to be associated with people behave in such a reprehensible manner to it's members. If you feel you can justify with your medical training who says what about a disorder then please go on patting people on the shoulder, telling them there there and promoting the same tired nonsense so they never get better. I hope you feel good about that.

P.S. I am looking forward to reviewing the nonsense you pedal on Dizziness and dissecting it. I would starting apologising now to those who will spend Christmas in misery with no hope because you are promoting conditions which are unproven, cannot be proven and cannot be treated. I know because I was one of those people.

Saturday, 18 December 2010


Whilst I sympathise with Emma and know her famous story about Labyrinthitis, this disorder simply does not exist. There is no way to diagnose it or study it,  a hypothetical diagnosis which should exist at the bottom of the pile when there are much simpler and treatable explanations for Dizziness. It is a widely used explanation within the medical professional (especially in ENT/Physio circles) as a placeholder for people with Balance/Dizziness disorders who are desperate to have a diagnosis.

In vestibular neuritis, the virus that causes the infection is thought to be usually a member of the herpes family, the same group that causes cold sores in the mouth as well as a variety of other disorders (Arbusow et al, 2000). There is some controversy about this idea however, as there is little direct evidence for herpes infection (Matsuo, 1986). The varacella zoster virus (the cause of Ramsey Hunt) is also thought to be a common source of vestibular neuritis.

It is also thought that a similar syndrome indistinguishable from vestibular neuritis can be caused by loss of blood flow to the vestibular system (Fischer, 1967). However, present thought is that inflammation, presumably viral, is much more common than loss of blood flow. There are still some that disagree (Fattori et al. 2003) .

In labyrinthitis, it is thought that generally viruses cause the infection, but rarely labyrinthitis can be the result of a bacterial middle ear infection. While there are several different definitions of vestibular neuritis in the literature, with variable amounts of vertigo and hearing symptoms, we will use the definition of Silvoniemi (1988) who stated that the syndrome of vestibular neuritis is confined to the vestibular system. In vestibular neuritis, by definition, hearing is unaffected. In labyrinthitis, hearing may be reduced or distorted in tandem with vertigo.

These definitions are flawed -- they depend on clinical findings and imply anatomic localization that may not always be true. Recently evidence has been put forth that some patients with the clinical syndrome of "vestibular neuritis", anatomically may have lesions in the labyrinth (Murofushi et al, 2003). Although anatomic data is rarely available, if diagnostic technology improves in the future, we may need to change the definition of "vestibular neuritis".

About 5% of all dizziness (and perhaps 15% of all vertigo) is due to vestibular neuritis or labyrinthitis. It occurs in all age groups, but cases are rare in children.

Reading the article it is clear to me that these definitions are weak (alot of it is thoughts) and also that these could change (be disproved) in the future when diagnostic equipment can really identify the source (as the author says). I note also the low percentage of those attributed to these lose criteria. My point is that these are still to be proved theories and that I believe many people with dizziness are not getting the treatment they need because of them.

I personally believe and there is plenty of evidence to suggest that pyschological factors play a much important role in dizziness and that treatment of dizziness as a pyschiatric triggered disorder should be prioritised over treatment as an inner ear disorder based physical one.

The only people who believe in labyrinthitis are the medical untrained and the medical professionals willing to treat you on the basis of this phantom condition. Desperate people with Vestibular Disorders will pay anything for help, unfortunately this makes Labyrinthitis lucractive to many.

On this blog I will communicate my personal experiences of suffering from Dizziness, you might find my experiences useful, you might decide it's utter rubbish.

Google Labyrinthitis, the highest ranking site is Emma's site, which means the highest ranked knowledge on the internet of this disorder is a patients view of the symptoms. Dizzytimes perpetuate the myth of dizziness linked to labyrinthitis by promoting it even though it cannot be clinically proven and is known to affect less than 5% of dizzy patients.

Dizzy with mis-information

This blog is dedicated to bringing real medical answers to problems others are not willing to help you with. The ideas are experimental and do not exist in any medical texts. There will be alot of statements backed by real life experience and medical reports from experts which challenge the way people are treated with dizziness.

Never give up, the simplest answers are usually the rights ones!

3 Years

That is how long it took for me to work out what was wrong and get treatment despite extremely poor medical support available in this area. During this time I was diagnosed with every potential form of vestibular disorder, was ignored by my GP and essentially left to my own devices to work out the problem myself. I did, I dedicated my life to understanding the problems, spoke to experts in 10 different disciplines before I eventually established that the problem is what triggered it. I would like to pass on my experience to others on this community since it was this site which helped me understand many aspects of the disorder and affected other people like me.

Now those 3 years do not feel like 3 years of normal life, these were 3 years were I would have gladly accepted physical torture instead for every day that went by. Most days were spent without a sense of joy, or happiness since even the slightest head movement cause headaches and dizziness that made life unbearable and not worth living. I consider myself a rational person, when I looked at the quality of my life and what it represented I knew that it was not. It cost me my relationship with my family, friends and partner. Worse it took from me my dignity, my faith in myself and my beautiful daughter who I cannot see now unless under supervision.

I wonder how many of you like me have spent hours trying to decide which serious illness and missing sense you would swap for ridding yourself of this condition. That is what is to truly known what it is like to have a vestibular illness. I never accepted it, it cost me dear for not accepting it but I could not give into it. Unfortunately the chance of getting real treatment is almost negligible, there are many people who claim to know about this disorder in the medical profession and do not. I would say that there are only a handful of people in the UK at this minute who can really help a Vestibular Patient in a meaningful way. The rest are just wasting your time (please believe me I know). This sounds harsh, I know what it is to build your hopes over weeks to see a Expert (wondering if this might be it), to go through the daily constant pain, taking drugs which make me sick and wretch, for them to tell me they can basically do nothing for you.

I believe I am the most tested Vestibular patient in the UK, I believe that whilst not medically trained I can provide better guidance than anyone you are seeing. This is no idol boast, I would like to publish a medical documents from my MANY evaluations to help members understand this disorder, the treatments which are effective and the ones which are not. I hope the admins (owner) helps me with this since I truly understand how desperate this disorder is and if I can give even one person here a chance to turn around their lives at Christmas it will help me balance the sacrifices I have made. I would never give anyone with a Vestibular Disorder false hope by posting this message, I can really help many people with this disorder by simply telling them what my symptoms were, what treatments worked and what the triggers were. I know from dizzy communities that many share my symptoms and the problems associated with it. I know who you should see and what you need to evaluate the condition. I am currently having reports for a legal case which represent the complete understanding I have of my symptoms which I will share to show you that I am serious.