Newbie here: thought I'd share where I'm at.....

[grace.mackay]

Hi all,

Please forgive me if I ramble on a bit, I'm new to this T/N thing and not sure quite where it's going. I guess the short story is that I started with this crippling pain like 1000 devils doing an irish jig wearing red patent stilleto heels on what used to be my brain, all the while stabbing the back of my eye and ear with their flaming minature tridents..............

that started, a week past sunday.

The pain I get is from my inner ear, up to the back of my eye, down the side of my throat/tongue/tonsil area till it hits the side of my neck, other times and other triggers give it to me on the top right hand side of my head from my hairline, down to around my ear. It's all very very brief,although when it comes there are a lot of these bouts all at once it steals my words leaves me feeling like I have tourettes because of the involuntary noises I was making and it's generally a bit crap! touching my scalp, brushing my hair away, talking, kissing my hubby, all seem to be triggers

So I've been back and forth to the doctor, the first time I got antibiotics because I thought it was an ear infection, they didn't help so I went back, the second doctor new straight away it was neuralgia and gave me tegretol.
I was started on 100mg twice a day and I was a space monkey on them but was advised to carry on with the antibiotics too, just in case, and then after 4/5 days to increase the dose of tegratol to 200mg twice a day which I have done, and I am totally wasted on them, but the pain is gone,( when I say gone, I can tell when the attacks are there, but the pain is more like cramps or something like that, rather than a blowtorch turning on in the inside of my head after a bolt of lightning has shown it where to singe)

So this is all progress, I am off work just now and with the effects of these pills there is no way I could function in the office even if I wanted to.

When I was diagnosed with the neuralgia, the doctor didn't specify what type, from what I've read I'm assuming it's either trigeminal or glosphorangael (SP?) and I think trigeminal is more likely, due to a familial link, I'm the 3rd generation of women (maternal side) that have been hit by this horrible thing.

My great aunt has suffered with this for years, on and off and it's been a nightmare for her, my mother was also hit when she was around 40 but she only had one bout (4-8 weeks) and it went away and has never bothered her since.
Who knows which of the two camps I'll fall into, all I can do is hope and pray that I fall into my mothers footsteps and just get the one bout, cause I'm living in terror that I'll get another electrocution at any moment, even on the pills that leave me in a rose tinted marshmallowland!

So that's a sort of brief version of my story to date, a somewhat longer more detailed version is listed on my blog here

http://purpleimp.blogspot.com/

The blog only came into existance as a progress a diary for another part of me that's decided to fall appart :) so if anyone's interested you're more than welcome to have a look.

I understand I'm very lucky to have had a neuralgia diagnosed so early and a suitable treatment given at such an early stage, I can't begin to imagine what it is like for people who have gone years before diagnosis, and I thank my lucky stars that my doctor is as good as he is.

Love and pain free days to all of you

Grace

***

[southerngirl]

welcome Grace and you are right you are very lucky, many of us had to see alot of doctors and before we were finally diagnose. I myself had two unneccessary surgeries, sinus ones, before being told in was a nerve in my face. This site was my saving grace also, and if you stay you will find alot of help here and alot of friends. Elival was the first pill to help me but tegretal helps alot of people also. Not feeling too good today so I have to make this short but hang in there and keep in touch with us with updates.
Catherine

[RStapler]

Hello Grace,

Welcome to our forum and glad you found us so soon. Your symptoms do, indeed, match those of glossopharyngeal neuralgia. Your description of the pain sounds very much like the pains some of us (though not all) get, and are classic for this condition. Trigeminal Neuralgia (TN) affects the 5th cranial nerve while GN affects the 9th and 10th cranial nerves (see http://www.umanitoba.ca/cranial_nerves/glossopharyngeal_neuralgia/, http://www.merck.com/mmhe/sec06/ch096/ch096h.html, http://www.nlm.nih.gov/medlineplus/ency/article/001636.htm, and http://www.neurosurgery.pitt.edu/minc/cranialnerve/disorders/glossopharyngeal_neuralgia.html. Others get pains that are less paroxysmal (sudden) and more burning or clamping. TN presents more at the front of the face, though teeth and gums are also affected.

The dopiness you are experiencing should fade as you acclimate to the drug. 200 mg/day is very little, and I maintained at three times that amount my first few years with TN. Higher doses (above 900 mg/day) tend to affect us much longer before acclimating. If it turns out this is permanent (probable), you should talk to your doctor about the possibility of switching to Trileptal (oxcarbazepine). Trileptal is a newer drug with fewer adverse side-effects than Tegretol (http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682237.html#other-information, http://www.drugs.com/tegretol.html). Tegretol is still the gold standard for treating neuralgias, but can weaken your autoimmune system and affect internal organs taken too long. Because of this, Tegretol requires you have regular blood testing to verify your blood count doesn’t drop. Also, you don’t want to be taking Tegretol if you are pregnant or trying to get pregnant.

There is a lot more information awaiting you in the two sticky-posts at the top of our forum page (Tips for Newcomers to TN Forum, Useful Websites). Also, if you turn out to be so unlucky as to have a permanent neuralgia, be sure to get a copy of the book "Striking Back, 2nd Edition". It is available from the Trigeminal Neuralgia Association (TNA, http://www.fpa-support.org/learning/Books/SBPR.html).

- Bob S

[grace.mackay]

Hi Catherine,

Thanks for your reply, I know I'm lucky to have been told it was a neuralgia ( of one variety or another) from the get go, and to be given an effective medication so early on in the procedings.

I hope you're feeling better and that you get a little bit of relief really soon.

Grace

***

[EE03]

Hi Grace,

You've been given great advice so I won't add to it. I just wanted to welcome you.

Take care, Ellena

[grace.mackay]

Hi Bob,

Thanks for your response and all the links, I've had a quick look at them and will study them in depth shortly. I guess all I can do is take the pills and wait it out, in the hope that I'll be as lucky with this as my mother was, (although I'm doubting it,)

The tegratol has helped with the pain no end, and although things are foggy on it, I understand that that will settle down very soon. I have upped the dose as per doctors orders, so I'm taking 200mg twice a day, and right now I'm forgetful, wobbly on my feet and I can't get my words out quite right but hopefully that will all go once my system is properly used to the drug.

I was advised that I would have to take it for 4- 6 weeks to begin with and I would be assessed again from there to see if I could reduce/stop taking it, time will tell I guess.

Thank you so much for all your advice, I can't help but fear I'll be seeing a lot more of you ( I mean that in the nicest possible way, I promise :) )

Love

Grace

***

[baywatcher]

Grace, welcome, we always tend to say that we're sorry you're here but that it's a great place to be if you have to be here. In other words, we wouldn't wish tn on anyone, but the forum here has been so helpful and rewarding to so many that it's compensation of a kind. You certainly sound like you're having some trigeminal neuralgia pain; I have all three branches of the nerve involved (the eye is a really painful problem) and my ear is often in pain. I too have pain in my scalp, all the way to the top of my head. But like you, I also have some throat pain. That's not actually considered to be a part of the tn. I just assume that there's a little cross-talk going on somewhere in the brain that makes one nerve cause another one to fire as well.

You're still on quite a low dose of tegretol. We can sympathize with the symptoms you mention, all of us have probably felt much the same when beginning the medication. Things get better and you feel a little more normal after a while. I was on tegretol for years before I finally developed a bad reaction and was changed to trileptal. It's much better for me and I do not feel at all impaired by it and really feel that the pain relief is better than tegretol.

As well as reading the threads above, you might want to check out the tna-uk. It's quite active and some of the material might be more relevant to you than the american stuff. We have several uk residents who post on this forum - one may pop in to say hello soon.

Come on back and let us know how things are going for you. Nancy

[grace.mackay]

Hi Folks,

Thank you all for your kind responses, it means a lot and it is nice to know there are other people out there who have experienced the same thing or variations of it.

I will keep you updated with my progress, I promise. I've had a wee look at the TN uk site but it seems to be down awaiting a revamp and this appears to be the most active forum I've found, so for the foreeable I think I've found my corner to loiter in, hope nobody minds :)

Right for now I'm going to go and do the hoovering before my last dose knocks me onto my *** for the next few hours, will speak to you all soon.

Lots of love and pain free wishes to you all.

Grace

***

[allih]

Welcome to our little family. This site has been a godsend as I knew nothing about TN when I came here. Everyone is extremely helpful and understanding, especially when we have those days when all we want to do is whine a bit. (as i do on many an occasion :) )

I hope that your medication se's settle down soon and that you have continued days of no pain.

Alli

[merymete]

Hi Grace,

Welcome, welcome. Glad you have found this forum, it was a true godsend for me. I also have typical TN with the tonsil area pain. I started with Tegretol, but ended up switching to Trileptal. If you don't find yourself adapting to the brain fog, don't be shy about asking your neuro for something different. Here's hoping the stiletto-wearing devils keep to themselves!

Laura

[grace.mackay]

Thank you all for your welcomes,

Things are on the up, conversationally I'm getting better, as my system gets more used to these pills, and I can now watch the tv as I can about follow the plot of what's going on, but my goodness the forgetfullness is ridiculous:rolleyes:
and the numb forehead is jusd downright odd!:confused:

As for speaking to a neuro, there's been no word of that yet,it was on my second gp appointment that I was prescribed the tegratol.

So in baby steps I am adjusting to the fog, but I'm needing 12 hours sleep at a time,one day has melded into another and it looks like I'm going to be off work for another week, just till I get totally used to these because right now there's no way I could do my job.

The devils are away now, there's been no stabbing or excruciating pain of any description since the drugs have been upped which is good, but wierdly I can still feel when I get an attack,but more like a cramp where the devils used to play sort of a way, does anyone else get that?Don't get me wrong it's bearable, but it's there!

Anyway I'm havering again, but thankyou all for your support so far, I don't know where I'd be without you all, already you've been a massive encouragment.

Lots of love

Grace

***

[mstw]

HI Grace. I've only been a member of the group for a couple of months, and I too was lucky enough to be diagnosed with TN early on. My neuro started me at 400 mg/day of Tegretol. After a couple of weeks, he bumped it up to 500 mg (he probably wanted to go to 600, but I was a bit resistent to increasing higher "too soon") because I was having some break through pains. That amount seems to be doing well for me - it's been over a month, and no pains! Of course, the TN could also be in a quiet period, so time will tell.

Everyone is different, of course, as to the amount of meds that will help their particular case of TN. One thing I wanted to ask you - are you still on the antibiotics? If so, I'm wondering if the combination of the Tegretol and the antiobiotic might be causing your degree of fogginess. I noticed a little bit of that for the first week or so, but nothing like you are describing. Again, everyone is different and some people cannot tolerate Tegretol. But if it continues for much longer, I would definitely speak to your doctor and try a different med. And if you are on the antibiotic, I would speak to the doctor on that as well - either stop that med (cause it won't help TN anyway) or switch it to another type (if you need it for some other medical condition).

All the best to you,
Marj







Thank you all for your welcomes,

Things are on the up, conversationally I'm getting better, as my system gets more used to these pills, and I can now watch the tv as I can about follow the plot of what's going on, but my goodness the forgetfullness is ridiculous:rolleyes:
and the numb forehead is jusd downright odd!:confused:

As for speaking to a neuro, there's been no word of that yet,it was on my second gp appointment that I was prescribed the tegratol.

So in baby steps I am adjusting to the fog, but I'm needing 12 hours sleep at a time,one day has melded into another and it looks like I'm going to be off work for another week, just till I get totally used to these because right now there's no way I could do my job.

The devils are away now, there's been no stabbing or excruciating pain of any description since the drugs have been upped which is good, but wierdly I can still feel when I get an attack,but more like a cramp where the devils used to play sort of a way, does anyone else get that?Don't get me wrong it's bearable, but it's there!

Anyway I'm havering again, but thankyou all for your support so far, I don't know where I'd be without you all, already you've been a massive encouragment.

Lots of love

Grace

***

[grace.mackay]

Hi Marj,

Thanks for that, I was on antibiotics in case it was an inner ear infection or something in my sinuses, I've finished the course of them and for all I tend to be fairly bunged up with my sinuses anyway, and I feel no different to normal and they didn't make any difference to me, so I'm off them now.

I tried to make a doctors appointment today but there was nothing left so I'm to phone in at 8.30am tomorrow ( that will be fun I've not been up before 11.30 since I started on them!) to see if I can get an emergency slot, so will try again then and take it from there.
I've been putting the fogginess down to my size, and that adjusting to the dose might take a bit longer because I'm a fairly little person, at 8.5 stone and not much more than 5 ft, I figured it would take some time for my small system to get used to processing it effectivley, maybe I'm wrong though.

It has been getting easier like I said, it's about an hour after the dose that I feel the difference and they take effect and then for a couple of hours after that I'm fairly wasted but it's lightening up after that now which is good, so there is some fairly normal time in a day even though my words still don't always work!:confused:

So I guess all I can do is see if I can get an appointment tomorrow and will take it from there, I will keep you posted though.

Lots of love

Grace

***

[allih]

I still get break through pains even with my meds. The feeling is not as intense as without medication but I can still feel it either as a crawling feeling or as an ache. The intensity depends on where I am in my medication cycle.

I think it may be normal to have some sensation. It is up to you and your doctor to determine whether it is bad enough to increase your dosage or change meds. I'd rather live with a little annoyance than stay in a fog because of my meds.

I hope things improve more for you.

Alli

[baywatcher]

A little bit of creepy crawly sensation, a little feeling of numbness or maybe a little bit of a burning feeling are a sign - I believe - that my nerve would be firing off like mad if it weren't being controlled by the trileptal. Obviously, there's just no comparing those pains to the electric shocks, it's more a matter of taking note of them and moving on. I suppose they could become more intense or something but right now it's just what's become normal. My worst breakthrough pain is a deep earache sort of thing.

You are certainly small and may have figured out one answer to your reaction to the drug. I've never taken any extended release med for tn, but they are out there and might work better for a tiny person. Also, you might ask about spreading your dose out a little and perhaps taking a slightly larger dose before bedtime. I often make the evening dose a larger dose if I'm needing to raise the meds temporarily. If it makes me sleepy then, well great, that's what I have on my schedule anyway, a nice snooze. Your doctor should welcome your observations and input; it will really help with managing your case. Nancy

[grace.mackay]

I thought I'd come on and give you a little update, well I was back to the doctor on Thursday, and I was signed off for another week, I had to go back to work and it was when I got to the office that the pills had kicked in and I got laughed at for being so out of it!
I went up to my parents for lunch and talked through the meds with them and decided to spread the dose out through the course of the day,as someone suggested, which I did, Thursday was a bit off, but Friday was better, I actually felt like a person again!

I did overdo it a bit yesterday,and I am paying for it a bit, but I've had a spread out dose again today too, and although I'm getting more break through this way, and in areas that hadn's been bothering me before I started on the tegretol, I'm more functional so, so far it seems like a reasonable trade off!

Thank you all for everything up till now, and Nancy for suggesting I spread the dose, it's made a big difference, love and pain free days to you all.

Grace

***

[baywatcher]

Grace, what an interesting place the islands are. Very different from the places many of us live. I read a book by the owner of the Shiant islands, and some of it felt quite familiar. It wasn't all that long ago, really, that this area where I live still had some of the same feel. I'm on a peninsula, and everything was very much less settled and modern here just a couple of generations ago. Even people who lived on my little peninsula had to be evacuated by boat when there was a forest fire - and that was only a little over 50 years ago. Still, Lewis is a lot farther from the larger cities of Scotland and England than we are here.

Do you have good ferry service to Stornaway? Many, many islands in Canada, just a few miles from me, are dependent on ferries or on their own boats if they want to go to any sort of small city for shopping. And is your medical service available on Lewis, or do you have to get to the mainland?

I hope that you're able to find the right timing for your medications. And that your co-workers slowly adjust to the ups and downs we have. The people I work with got so accustomed to my slowly changing abilities that they were really surprised one day when I was supposed to be co-signing checks and they saw that I had forgotten how to write my own name. In fact, they got me straight out to my doctor and she changed my prescription right that hour. Having others watching over you is actually a good thing. Nancy

[grace.mackay]

Ah so you've read about the dissappearing lighthouse keepers and the mystery that has forever since surrounded the shiants! Yes island life is interesting, I love it, but it very much has it's pro's and cons, we have a peninsula on the island, that is often closed off for hours at a time due to the sea battering the causeway,and the road having to be closed.

This is a deeply religious community (presbyterian) and that has a huge grip on the way things happen, it has only been in the last 3 or 4 years that there have been pubs allowed to open on the Sabath. There is now one shop in the whole of lewis that opens on a sunday and it was met with huge opposition at the time it got it's liscence ( let me tell you though that it is full to bursting from the minute it opens till the time it closes) We do have sunday flights now but the church picketed the airport to show it's dissaproval when they were brought in.

Still no sunday ferries! So you get an idea of how it used to be,when I was growing up the swingparks used to chain up the swings on a saturday night through to a monday morning so the sabath would be observed, I've heard of people who would lock up cockrels on a saturday night so that they couldn't get to the chickens so even the animals would observe the lords day! Granted that is going back a lot of years though, but many people still wont hang out their washing to dry on a sunday for fear of offending the good living neighbours.

The health service as with all of the NHS leaves a bit to be desired, it depends on what type of support or refferal you need really, a lot of referals require you to be sent to the mainland to be seen there, for example there is some breast screening here and mamogram vans come over from time to time, but for ultrasound scanning, or mamograms when there's no van, you need to go to inverness, and the NHS will fly you there ( 25 minute flight, however should you just want a day trip to inverness for a shopping spree, which is what a lot of people do because our shops are limited, it's 3 hours on the ferry, longer if the weather is bad, and then an hour and a half on the bus thereafter) there are some specialists available at our hospital, and the hospital is like many others praised for it's nurses, ( other than a and e, who often leave a lot to be desired) but it suffers due to lack of resources, and too much money spent on paperwork and not enough on people)


It's wild and windy round here and I've had to fashion a snood type balaclava thing for going out because I'm scared of the wind getting to my face and setting me off, and I've had all sorts of jokes about, race, religion, south park hoods, mighty boosh references to look deep inside the parka, and the latest has been ET, "Elllllllioooooot" I know everyones just trying to be nice and teasing me in a light hearted fashion, but it's frustrating and hard to take it in fun when they have no idea of the reason that you look like you do, and that you don't care and that anything is worth doing to stave off a potential strike, even when you are medicated!

I may have spoken too soon earlier on when I said the trade off was going well, because I've had a lot more break through pain when I've been talking this evening, I'm going to see how tomorrow goes and if the break through is the same I might have to revert to the 2 large doses, which is not ideal we'll see. So that's where I am at the moment, lots of love, and I'll no doubt speak to you soon.

Grace

***

[saraiderin]

Grace, While I am sorry to hear you have TN, I want to welcome you to the group. I have found that the longer I stay here the more I learn I am not alone in the way I feel. In the past 27 months since my TN relasped I have learned to look at life as a very interesting adventure. :o I am so blessed to have a place like the one here where I can vent if need be. Ask questions, and share the good news when I have it. Know that you are not alone in the "interesting" TN journey. Take-care, Sarah

[grace.mackay]

Hi Sarah,

While I haven't had a specific diagnosis of having TN, I have been told I have "neuralgia", I have a family history of TN and I'm assuming that that's exactly what I've got given how the pain is, and I'm slowly but surely adjusting to taking tegretol, which has worked wonders in its own little way!

I too feel totally blessed to have found this little cyber corner, it helps so much being able to ask questions and being able to vent, without just feeling like a moan when others in the " real world" don't really understand what this whole thing is like.

So thank you for your welcome, and no doubt I will be seeing more of you in the days and weeks that follow.

Lots of love

Grace

***

[spoiledbeth]

It's wild and windy round here and I've had to fashion a snood type balaclava thing for going out because I'm scared of the wind getting to my face and setting me off, and I've had all sorts of jokes about, race, religion, south park hoods, mighty boosh references to look deep inside the parka, and the latest has been ET, "Elllllllioooooot" I know everyones just trying to be nice and teasing me in a light hearted fashion, but it's frustrating and hard to take it in fun when they have no idea of the reason that you look like you do, and that you don't care and that anything is worth doing to stave off a potential strike, even when you are medicated!

I may have spoken too soon earlier on when I said the trade off was going well, because I've had a lot more break through pain when I've been talking this evening, I'm going to see how tomorrow goes and if the break through is the same I might have to revert to the 2 large doses, which is not ideal we'll see. So that's where I am at the moment, lots of love, and I'll no doubt speak to you soon.

Grace

***

I can totally understand getting teased, I've been teased a lot about covering my face. I have a cousin who's son is 16, but VERY immature, and at one of our family reunions we had terrible wind. I had fashioned a handkercheif so that it kept the wind off, and of course it made me look like a old fashioned train robber. He started in on me and didn't let up until I threaten to beat him within an inch of his life. I haven't blown up like that in a long time, but I was really going to hurt him if he didn't shut up. Everyone looked at me with a shocked look on their face, and realized I was really serious. He started to say something again, and his dad finally spoke up and told him to shut his mouth. That was kind of a shock to me, because they usually just let him loose and let him do whatever when he's around us. I can only guess that they realized how serious I was and realized that if they didn't shut him up they might have to take him to the hospital. It really made me mad, it's not like he doesn't know what my health issues are and any normal person would have been thoughtful and kept their mouth shut. Especially after he made the first comment and I told him why I was wearing it.

Anyway, just wanted to let you know that you aren't alone, I can definitely understand how hard the teasing is. I wear a baclava when I go out in the winter, and hate having to wear it because the minute I walk into a store I get looked at like I'm going to rob the place. But, it's better than having the cold air hit my face! Sometimes I don't wear a jacket even, but I always wear my mask! lol

Beth in MO *butterfly2

[saraiderin]

I can totally understand getting teased, I've been teased a lot about covering my face. I have a cousin who's son is 16, but VERY immature, and at one of our family reunions we had terrible wind. I had fashioned a handkercheif so that it kept the wind off, and of course it made me look like a old fashioned train robber. He started in on me and didn't let up until I threaten to beat him within an inch of his life. I haven't blown up like that in a long time, but I was really going to hurt him if he didn't shut up. Everyone looked at me with a shocked look on their face, and realized I was really serious. He started to say something again, and his dad finally spoke up and told him to shut his mouth. That was kind of a shock to me, because they usually just let him loose and let him do whatever when he's around us. I can only guess that they realized how serious I was and realized that if they didn't shut him up they might have to take him to the hospital. It really made me mad, it's not like he doesn't know what my health issues are and any normal person would have been thoughtful and kept their mouth shut. Especially after he made the first comment and I told him why I was wearing it.

Anyway, just wanted to let you know that you aren't alone, I can definitely understand how hard the teasing is. I wear a baclava when I go out in the winter, and hate having to wear it because the minute I walk into a store I get looked at like I'm going to rob the place. But, it's better than having the cold air hit my face! Sometimes I don't wear a jacket even, but I always wear my mask! lol

Beth in MO *butterfly2

Family can be the most hurtful when it comes to TN. I am sorry to you had to deal with the cousin. Hang in there. Sarah

[grace.mackay]

Thanks Beth, I guess it's just another frustration that comes along with this, It is bitterly cold here today and I took a walk to the shop ( less than 5 mins away ) snood and all, and when I came back in I had my longest attack yet, it was like an ice cream headache gone wrong, and I can only thank god for the tegretol and that I wasn't feeling it full force, it lasted for about 10 minutes and the fleecy snood stayed on till it cleared ( I know too, that I'm lucky that that's the longest I've encountered!)

Oh it's a wonderful life! :) hope everyone's doing well, and not sick of listening to my moans yet.

***

[baywatcher]

Oh my. Grace, your friends and neighbors must be a tough lot indeed. Here, where it's cold and raw and windy a large part of the year, we just take it for granted that we'll be wrapped and covered and hooded and whatever it takes. So a tn sufferer would hardly stand out at all. I do like the deep hoods on the parkas that wildlife officers wear, I don't much like the balavlava touching my face, and my glasses fog up something awful when I wear one. I've worn silk ones when I had to.

I guess we aren't into that kind of "teasing" much anyhow. No one has told me that the diety was annoyed with me (what a petty little god that would be) or made any comments on my clothes, lifestyle or personal habits - but I sure can understand that bullying like that would make a person angry. If you ask me, mean, unkind behavior is a worse sin than most. Nancy

[grace.mackay]

Hi Nancy,

I think a parka is due to be the next investment, because a lot of the time our weather is fairly ferocious, and generally I'm a someone who's wrapped up the the michellin man anyway.

As for the religious remarks, well I've come to the conclusion that Ann doesn't understand what TN is all about and how much adapting this is going to cause me to do, never mind the pain,and I have to accept that, and although I don't understand her acceptance of God, religion and how she chooses to see it,I also have to accept that and I will leave it at that. Yes her remarks stung at the time but it's all said and done and I have to move on and say nothing more about it.( rife PMT may have had a lot to do with it, but the mellowing of the drugs has probably helped with my reaction)

The teasing is probably going to be an ongoing thing, and that again is going to take some adapting to aswell.
I know though that generally it is well meant, and it's the only way that the guys can try to lift my mood a little ( that is the ones that are close to me, the others aren't really friends and can all go and whistle!)

The ones close to me are taking the mick with what I'm having to wear, when my words come out all wrong or when I have a wobble on my feet, they start waving their TNA www.endthepain.org wrist bands at me with comments like " power and love to you and your spazzy face" or something similar, ( please don't anyone be offended at that, it's just what happens in my little world to try and distract me from my frustration with myself )that kind of teasing mostly comes from my husband, and a couple of the boys from work.

I'll be honest I was surprised, it's amazing who you're friends turn out to be when you're out of circulation for a while. I should be thanking God daily for the friends I have, it's not that I wouldn't have expected the ones that come round visiting to make an effort, just maybe not as much as they have ( bless them, they are an absolute Godsend) I would have been lost without the boys comming in to see me.
And some people that I would have expected to see, or at least to phone, seem to have forgotten I exist, and you know this, it hasn't upset me, because I have the people that matter around me ( and again the mellowing effect of the drugs probably help)

So life is better, and I am a little more accepting of other people again now.

The drugs are a whole lot better in my system, although increased by a fair amount, (800mg daily) this is my second day on 800, and the first day with no pain at all, I was having pain, although very different to how they started right up until today, so I am delighted at this progress!

I'm still sleeping for 12 hours at a time, my memory is still non existant, and my concentration is not much better, my ability to speak properly comes and goes throughout the day,depending on how long it's been since I had my pills and I still wobble if I stand up too quick, but things are on the mend, because I'm generally clearer, and I can get off my behind to do things when I need to.

I have another week and a half off, and hopefully I'll be functional enough to do my job by the end of that, but time will tell I guess.

So that's where I'm at now, thought I should let you all know all the details as you've all been so fabulous up till now.

Lot's of love and pain free wishes to all of you.

***

[RStapler]

Grace,

A lot of us TN’ers have to wear special clothing (hoods, masks, &c) to shield ourselves from wind. I too have been laughed at for wearing a hoodie in mild weather and almost no wind to speak of. I get dumb looks trying to explain the wind is ‘tearing me up’ when it is so light almost no one would notice. I also get looks, laughs and comments walking around with a notebook, envelope or newspaper held over my face like you see celebrities do when hiding from paparazzi. Invariably, some wise guy wants to know who I’m hiding from, asking this at the most inconvenient of times; and if you don’t answer, people get the idea you are insufferably snotty. Try to answer them as best you can and don’t be shy about 'showing off' how much it hurts. Most people wise up pretty quickly and ease up on us. They are much more understanding once they see there’s a reason for the ‘hiding’.

As for not being able to talk, that is something else you are going to have to adjust to. TN’ers are reticent speakers. For those of us who communicate mainly through speech, this can be one heck of an adjustment. For those of us who were never big talkers to begin with, the attention TN draws is a huge nuisance. On the other-hand, our writing skills benefit greatly from TN. If you are a natural communicator, you are going to find yourself leaving fewer phone messages and more email, less noise and more content, less laughter but more smiles. For example, some of us carry TN information fliers around with us we can pull out to fling at well-meaning friends expecting an answer for why we’re acting so weird precisely at those moments speech is impossible. Many of us write, paint, mime, depict, &c our experience of TN in an effort to enlighten non-TN’ers as the best means of assuring them we’ll survive this without the benefit of endlessly regurgitated explanations.

I know communicating TN is not what you had in mind. You expected to be communicating joy, wonder, and hope; and find yourself saddled with their opposites. From your blog, it is obvious you are an entertainer and extrovert; and TN puts a more than usual crimp in all that. I’m not familiar with ‘performance coaching’, but can guess it will be difficult without robust movement and voice. Singing and dancing with TN are out of the question, though you will still be able to sing and dance once the meds take hold. The problem is that both those things require a lot of uninterrupted discipline that TN will frequently interrupt as you go through its various cycles. At this stage, you have some choices to make, and they will determine how deep an impression TN makes.

However, you are going to find having TN is not all negatives; and conveying life as it actually unfolds will be the more interesting and your interpretations more authentic from having a condition like TN. TN newcomers invariably see only negatives, and are appalled by the changes forced on us. We all know life is change, and we expect some; but we also expect change to come gradually, giving us time to change with it; only after we have had our shot at ‘the sweet life’. We expect to be robust and unfettered in youth, a few aches and inconveniences in midlife, and decrepit only when so old we’ll be respected for our pains and near extermination. So, when it happens suddenly, drastically, and in the wrong season, we are unprepared and unwilling to accept. I wish I could tell you this is temporary and you will get your shot at unfettered happiness, but that is not something anyone can promise, and, in my case, would entirely wish on you. This unsought condition is also an opportunity. You may elect to go the surgical route to ‘cure’ yourself of this and it is probable that will work. It will alleviate the physical damage so that you will have pain free days. Even so, you will never be fully as you were before because, now, you have some appreciation of what can go wrong and will never be entirely free of that knowledge. Don’t jettison that knowledge the moment you get free, use it and blend it with the rest.

Twenty-years ago and before TN, I too was something of a performer, though hardly a professional. Don’t laugh, but I sang in a choral group and wasn’t too shabby. I didn’t have the right sort of voice in my teens for rock-and-roll and never mastered a musical instrument, so I never more than fantasized stardom and the swarms of cute women who'd fawn over me (now you can laugh). However, I am a pretty good bass-baritone with some love of classical music. Had I been born earlier, I might have made it as a crooner (Sinatra, Bennett, Como, Crosby, Tom Jones, &c), but, by the late sixties, crooning was out. I may have also made it in country-music, but, then, I was proud city-kid disdainful of twangy-toned butchers of Apollo’s gift (now, I listen to country-music – go figure!). My voice broke late (boy soprano until I was 14) and I remained an unspeakably skinny geek until late in my teens, so singing in school choirs also provided me with a social life. Choral music requires daily practice, decent lung capacity, and attention to technique. Neglect any of these and you can pretty much forget it, even at the amateur level.

I sang all through school (3rd grade on) and for a time in the Navy Blue-Jackets while in basic-training. After that, I was busy doing other things and suffered a throat condition making it difficult to sing. At that time, singing was relatively unimportant, so while disappointed I wasn’t devastated by the news. Twelve years later, I was surprised to find my throat had healed and I didn’t sound too terrible. A friend of mine urged me to join a group she was in, so off I went to a try-out for a large adult choral society (110 members and growing) in Berkeley, California. The Baroque Choral Guild has a near-professional standing in the San Francisco Bay area, and it was doubtful I’d make the cut; so trying out was more about whether the Guild might steer me toward something more appropriate. Surprisingly, I passed the try-out (despite having practiced less than a week and singing the Tuba Mirum baritone solo from Mozart’s Requiem that I knew but hadn’t practiced). The director heard something in my voice worth coaching and saw I could minimally read the music. The Guild was far above anything I’d done before and all the members were serious and expected me to be serious. I spent the next three years relearning how to sing, improving my reading skills, and disciplining my voice (in school I’d been lazy). I had some small hope I’d eventually make the group’s still more elite lead-singers.

Then, TN kicked in and I lost it all again. I could have kept trying; but it was clear to me that unless I could be sure the medicines would provide an unbroken layer of protection, I would not be able to sustain the discipline it takes at this level and would pull the group down with me. I kept going to rehearsals for awhile, singing only when the pains were absent. Pretty soon, though, I knew it was over and said my goodbyes. Once you’ve performed at that high a level in classical music, continuing at a lower level just isn’t the same thing. I still practice when I can (medicated or in remission), but not in a group setting and only for the love of the music. Interestingly, one of the last things I sang with the Guild before the pains interrupted was the Mozart Requiem while at a retreat; where I fill-in as soloist singing the Tuba Mirum. It wasn’t on a stage in front of a live audience as I once hoped, but it was to a group of people whose approval mattered more.

[grace.mackay]

Hi Bob,

Thank you for such a comprehensive response, yes you're right communication for me is a major thing, I am by nature a talker, and so far there's been very little that's ever slowed that down.

My job at the moment is, as you noticed as a performance coach, within a call centre and I spend my days talking, encouraging and re enthusing people once they're starting to flag a bit under the strain of technical support service that we offer, and since I came down with this I haven't yet been able to go back to work, I'm still waiting for the medication to stabilise enough for my concentration to be at such a level I can do the job again. The job however is on a 3 month secondment basis, the end of which I'm nearing, and I am torn as to what I want to do when I return.
I love the coaching, it's a lot more real, you're in and about the people, and the people aren't just names and numbers, you get to know them and their issues and their personal attitudes in a way you don't doing any other job in the centre, and the aspect of being able to help people in some small way is something that I love.
I am however only on secondment, and there will be 2 options available to me if I choose not to continue/don't get the job when it comes round again which is very soon, they are going onto the phones again, which I haven't done in 2 years, again it's talking all day( trigger, trigger trigger) in a far more stressfull fashion, and I'm reluctant to do that if can at all avoid it, or I may be able to go back to doing what I was doing before which was admin and correspondance, which I'd be happy to do but that aspect of the business is a legacy product and is getting phased out so the powers that be might not let me back to that part of the business anyway, ach who knows, it hasn't happened yet so I will cross that bridge when I come to it I guess.

Yes performing is something I've done for a long time, probably 15-17 years on an amateur basis, working with the local drama groups, both as a junior and as an adult, and for a while I was running the youth sector of the club, and it's something I love.
I was asked to sing for them as part of a review show a few weeks ago and the TN stopped me in my tracks, and I was fairly gutted by it, I wasn't really aware of the long term implications of this then and the show was on the first day I started taking the tegretol so it didn't really hit me as badly as it could have done, and panto is looming and I'm really not sure if I'll be able to do it, even if the pain is under control, I doubt I'll have the memory for it.

Singing is something that I too have done on and off, choirs in school and church, and a band here or there, but nothing too serious. I sing for my enjoyment first and foremost, the rest is just as an aside.

I have started as part of an accoustic duo in the past few months though, and it's one of my largest pleasures in life, my partner in crime plays guitar and sings, and I sing and occasionally play autoharp ( only because I don't have the coordination for the guitar!) we play, we sing, we write, and the rest of the world fades away for a while, we're looking at recording some tracks at the moment, but only time will tell how all that plays out, but giving that up would devastate me, and I hope and pray that that doesn't happen.( although my husband seems to have other ideas, we may have a move to the mainland looming, and for 100 reasons I just don't want to leave, but that's anoher story and another stress for another time!)

SO being an extrovert is a fairly large portion of what I do on one level or another, and in honesty I hadn't even thought about TN's effect on my social life, it was work that was filling my thoughts! I hope and pray that this will not affect the things I love to do, on a long term basis(wishful thinking I know, but my mother had one bout in her life 15 years ago, and it never came back, so on that basis, I will cling to the hope I might be that lucky too!)

I know what you mean about expecting to live the sweet life in our youth, thankfully ( or not, I'm never sure now) I already accepted that my little ol system needs to be scrapped for a newer model due to problems with my joints ( mainly shoulders) and although they don't really affect me now, I was resentful and angry when they got bad to begin with.
With the TN, it's almost as if my shoulders paved the way, and I had those problems as some kind of preparation for this ( my word I sound like some sickly sweet fable!)

I'm really not sure about surgical routes this early in the day, As it stands I have to go back to the doctors and demand a referal for an MRI, and a Neurologists appointment, and request MS testing because of my age, none of that has been done, I was given tegretol, signed off work and that was it, I thought all of this was standard practice!? ( especially when a doctor on your first visit says " oh yes it's neuralgia" you would think they would do the other stuff too?)

Never mind, tis all part of lifes rich tapestry, isn't that what they say?!

But Thanks Bob, you've given me a lot to think about and it was all most appreciated.

Much love

Grace

***