CMT Central

Hi my name is Rhya and it rhymes with 'fire', hence the call sign Rhyafire.... helps people know how to pronounce my name easily!

I have HNPP and have been diagnosed for a couple of years now after two car accidents (not my fault I hasten to add one was my mother's naff driving and the other a group of stupid boys crashing into the back of my car!) left me with severe whiplash, a dislocated coccyx and pain in strange places and unexplained numbness in all parts of my body. A gorgeous neurologist (why are they always so.... seriously yummy? They could at least provide a senile doddering old chap who has all the sex apeal of a rhinocerous!). Well, after stabbing my body with a pin, he suggested HNPP and bi-lateral carpal tunnel and later bi-lateral tarsal tunnel syndrome... I didn't know you could even get that... I do now! Not good. I told him to go back and find something else to diagnose me with, preferably not so horrid and definitely curable, but a chromasome test later and my fate it seems was sealed! It appears that there are two types of HNPP, the non painful type which you get numbness and weakness with associated problems and the painful type which has all the joy of the first type but with the added bonus of chronic pain anywhere in your body, but mostly bone pain... Guess which one I got I also have Meniere's Disease which is rather like having your own private boat all of the time, vertigo and nausea! I also suffer with migraines, but not the usual type, oh no! I have to be different and have stomach migraines and limb migraines! Yay! (I swear they make these things up to fit the symptoms!) I try to keep positive, because I'm naturally a positive sunny, person, but sometimes I get a bit worn down...Hey ho!

I am a Behaviourist by profession which is exciting and fun actually I love it! I mostly work with people who have Social Communication problems like autism, ADHD and challenging behaviour, adults and children. I love to teach children who have 'very bad challenging behaviour' how to manipulate the adults around them to get a positive response. I call it magic tricks, (mostly NLP) and the young people love it because it really works. The result is of course that the adults think I have 'magicked' the kid into a model citizen and then they treat this little ruffian like a real person for the first time ever
Sadly I can't work much at the moment because of the menieres disease mainly; after giving a conference lecture to 200 people while having a vertigo attack, I realised I needed to take some time off. Not good at all.
I do a lot of charity work but while I remain fairly active on that front, I have had to pare things right back to the very basics. Very frustrating.

I have four men in my life, all my fab sons. I was a young mum at 18 and my now 24 year old is a mechanic... very handy! He also teaches car maintainence to learning disabled adults in his spare time.
My 22 year old is a carer and a classroom assistant for severely autistic children. He is often my carer for functions and will come with me to assist me with conferences and workshops. He is also a Kickboxing instructor too!

My two younger sons age 20 and 17 are both autistic... they were classical cases diagnosed each aged 2 years old as they were so classic, one also with epilepsy the other with ADHD and their dad was diagnosed with Asperger's Syndrome (considered a higher functioning type of autism) when the 20 year old was diagnosed. So fun times for all of us!

My 20 year old, I was told would be better off in a specialist home for autistic children and that I should get on with my life. He would never talk or live a useful life because his disability was so severe and it was formidable believe me! I said 'No thanks!'. He's just completed his first year at university and is on for a 'first' class degree! has a girlfriend and travels the world.

My youngest son is an incredible young man, same kind of prognosis except I was told he would not have any useful speech and language. He couldn't communicate very well at all, so I learned BSL stage I, then taught him to do it. I used to sing opera so I began to teach him to do scales and found that he had perfect pitch (as did my other autistic son), so we sang our conversations in arias. He now is the youngest advisor to government on disabilities and children through various committees and groups in Westminster.

I have three cats, Merlin the white cat who thinks he's my boyfriend! Tibbs the girl cat and Magnus the slobbering cat-dog. They all hate each other and it is open warfare in our house every day for who gets to sit on my lap, (Merlin usually wins using his coughing 'I'm ill and need some love' technique....typical boy!) But I do try to be fair.

Well enough ramblings, I hope you didn't grow too old reading all that! (well Sam you did say just blurt it out!!)
Hope everyone is as well as they can be....
Love
Rhya xx

you did go on a bit didn't you

no seriously, that was a really interesting read. its not often I can last a post that long without A) giving up out of boredom or B) attempting to pick out the important bits I must say I read yours word for word

you sound like such a strong woman, I sure wish I had you're confidence and your out look on life.



I truly do look forward to reading all your posts

Oh dear, it didn't seem so long after I'd edited it!!!
Thank you for your kind comments Sam, I have had a strange life, but it has been fun too. I am a bit of a party girl Me and my gang get on really well and have such a laugh together. I sometimes hate myself for being so positive... but even that's funny!
'If it's not fun, don't do it!' that's my motto.
for you Sam.

Rhya, is the two main types of HNPP you describe based on your observation, one that I'd agree with, or is it something your neurologists have talked about. I know the groups for HNPP I 've been in have been dominated by mostly the pain variety, but perhaps that's because their experience doesn't tally with what they're told by the neurologonks, so they go looking for others for reassurance...

I've found some interesting info about migraines which perhaps would be better posted elsewhere, but they're pretty weird things to deal with and have many neurological manifestations. There's a great webbo out there, which gives some great descriptions and may paintings and other artwork...
Migraine Auras and migraine art

seems strange to do this but I find I'm incredibly creative (well this maybe rather subjective!) during them... the headache can be a bit of a downer though.

Listen to me .... rabbit rabbit rabbit.... a 7foot invisible white rabbit .... called Harvey ...

Anyway, great to see you here

Yes the neuro told me that there were two main types, one that seemed to be painless but with the palsies and weakness. He suggested that this type were the least diagnosed because their symptoms often went unreported because people put them down to the aging process. The other type, the one with pain, he said maybe was down to demylination and increased hypersensitivity as nerves became damaged.
I don't know if these were his observations or whether he had researched this. I can ask next time I see him if you like.

God, the migraines are so debilitating. I see auras most of the time and I can understand why people would want to paint them... some are quite beautiful! I am a closet artist both my parents are acomplished artists so I guess it must have rubbed off a little bit, but I must admit I couldn't draw or paint while in the grip of a migraine, so all respect to you my friend!

The neuro has just upped my medication again, he's convinced slow release propranolol is the way forward and wants me to take lots more gabapentin, but they make me feel so weary. I guess I'll give it a try and show some willing.

Hopefully it's a sign of greater awareness of what HNPP is.. much better than the "it only causes painless palsies" hogwash that I was subjected to.

I don't paint Rhya, my creativity is only subjective, I rarely accomplish anything during these episodes, sometimes I think I could unravel the mysteries of the universe during them, but I'm sure if I wrote anything down it would be gobbledegook. I just feel 'on fire' when it's happening...

I find cinnarizine helps, strangely enough, maybe that's just due to the sedation it causes, like a chemical cosh...