Head Nodding And Hemi-Facial Spasm + MGD [PATIENT]

[AprilShowers]

About 3 years ago I developed an head nodding disorder and a year later facial tics, and then only occasionally my top lip twitches. On the phone my voice sounds funny to listeners so I pretend I have the flu. I know when my eyes are bad, and my tear glands are bursting with ailment pain, the head tics will be severe, and the opposite occurs when my eyes aren't so bad the facial tics reduce.

I was prescribed Propranolol tablets which had no effect whatsoever nor made any noticeable improvement, so on a whim I took two Paracetamol tablets with them and the twitch stopped completely? Does any member have any views on this subject or advice. A Google search on this subject drew a blank.

[littlemermaid]

Hello, AprilShowers ~ Have you seen a neurologist? And a neuro-ophthalmologist? Have you had any scans yet? Do you think paracetamol had an effect on a process in the brain, or do you think it eg relieved veins pressing on nerves, in which case 1/2 aspirin might work? Didn't your eye pain and blepharospasm start long before, or did the blepharospasm start with these other neuro symptoms? Do you think the tics are caused by the eye pain, or expecting the pain?

[AprilShowers]

Hi Little Mermaid /Copenhagen. Seen 3 neuros, the first was alarmed at my condition, she said knew very little about it, that I had hemi-facial spasm on both sides of my face which is so rare it's almost unheard off, she said her colleague was the hospitals expert and she would have him see me as a matter of great urgency [ha-ha-ha] this clown wrote to me 3 months later requesting I attend an appointment set by him for 3 months later, I did attend, during which he made a lot of notes, we went through the touch your nose, toes and stand up on your toes with your arms outstretched routine [I wonder do they kill thesmselves laughing at us after we've left - at our silly, misguided efforts to appear sane and healthy to another human] he said at the end of the appt he needed further time to study my case, and about a further 3 months later he wrote again that he wanted me to attend for treatment 6 months later. I never bothered. I wrote to him and the hospital saying if it took 18 months to travel down this long, long road I was getting off the bus, and not bothering. These guys earn £200k a year, and know more about golf-swings and fine restaurants and hotel resorts than they know about medicine. I'm beginning to think the Hypocritic Oath [sic] they swear when qualifying is written for them by BAR-Bank, with additional aid from the XYZ Cayman Island's offshore accounts dept.

* Paracetomal does work, and so does Aspirin, both treat the mild, itch irritation low level pain we suffer 24 hours a day. Here's a question: Is tinnitus and MGD / gland disorders related in some way?

[littlemermaid]

I wonder which neuros are studying and researching facial spasm right now? They might love to meet you - what it is to be an interesting case... There is indeed no point in seeing non-starters, unless you want to talk golf or fancy a day out in a corridor. I think if I was you I'd try National Hospital of Neurology and Neurosurgery to get a view on what is possible. Good excuse for a London city-break - the weather's lovely down here but do it before or after the Olympics unless you've got tickets... I do love medical tourism.

[AprilShowers]

Thank you for the advice Mermaid [did you see the film with Gynis Johns 1948 vintage] I'd like a week in London or better still Copenhagen, my brother in law as a flat about 400 yards from Trafaglar Square so could stay there. I'm giving up on hospitals for now and to be frank they've had me living in hope for so long I'm beginning to feel jaded. I may have struck the button on the head when I remarked above; What do they really think, what do they remember about patients mannerisms, and what do they write down. I may go and look at my hospital notes and have a good read of them. My regards Bob.

[littlemermaid]

Miranda! Love the ending when she escapes back to her natural habitat, free.

Neuros are very interesting. They don't appear to do anything except look at you funny and get you to do daft stuff but the good ones are really sensitive and say things like 'do you understand what I am saying?' while looking for tiny tiny signs. In your case, well informed, you might get lots of medical students too and give a tutorial.

It needs to be NHS referral so they can do all the neuro-ophth tests too. Another good question for them, as well as 'what is this?': who is the best person to treat this regularly in my region and improve my quality of life? (your region including Liverpool, Sheffield, Manchester teaching hospital 'specialist centres of excellence' as well as Leeds)

Hospital notes. Good plan. You can request copies from Medical Records to take with you anywhere you want. Any attitude problems, get a legal Access to Medical Records form from them NHS How do I access my medical records. There is cap on the maximum photocopying charge (heh heh).

Your sister is married to an ambassador?

[Joseph]

Have you looked into a possible anxiety and/or a depression as a cause for your symptoms. It may be worth while to discuss this with your doctor as a possible cause of your twitches and facial tics. Anxiety has all kinds of physical and mental symptoms. The best doctor I have seen so far for my dry eyes has been a psychologist. He not only seemed to care but put a lot of things into perspective.

[spmcc]

There is something called dystonia (blepharospasm and laryngeal are considered 'common' types of dystonia).

I think you would see a neurologist who specializes in movement disorders.

Just in case you're interested, I'll PM you the website of one I saw on a TV program. He's at Columbia Univ (NYC, baby! How about a visit to your old colony?)

[SunshineinCalgary]

Hi Aprilshowers,

I had wanted to reply to this email many times but I thought you must have checked out this website. But in case you haven't, this is it:
http://www.hfs-assn.org/

This website contains a lot of patients' history and diagnosis, and other links as well. (like the DES). Good luck.

[AprilShowers]

Unaccustomed as I am to public speaking I'd like to stand up and thank you all for all the lovely advice and help given. The snag is I'm allowing my eye-problems to take over my life. Before I do something or go somewhere I have to ask the two-eyed-monster will it be okay? Are they going to behave themselves today. A few years back I was driving my wife mad by drawing [USA -closing] the curtains at 1pm in the afternoon, she must have said a million times "If any burglars pass they'll think were out and break in'. In 44 years of marriage we have had one burglary but pointing this out to her does no good. And in a nutshell those irrational fears of hers sums up whats it's like living with, and being an MGD and Dry eyes disease sufferer. Tell me how do we get this message across to doctors? the ones I've seen will say "Your wife is the problem", who knows maybe he's right? So do we enquire from him how to get rid off her and go running off down that road screaming for help or shut up. Maybe a man whose been married once should not be treated by a doctor whose been married 3 times and had numerous affairs, they don't gel? Maybe we needs to have morals segregation between patients and doctors, or old school hospitals and new school hospitals, modern doctors for modern patients, and traditional doctors for tweed suits, homburgs and brownstone patients. I want a patients questionaire and a choose your own doctor list with photos, and a Vote for Your Most popular or unpopular doctors poll and the losers goes to some Asylum for a month as a patient to be re-educated by the staff as per One Flew Over The Cuckoos nest, I want the patients to run the hospitals not the quacks!!!