I am self-employed, so that is the only way I could do so!
Ballalarke,
Hahahahahaha! It sure does not to like being discussed…and will often retaliate! I am sorry about the GPN, I have moments of wondering if that is beginning, too…urgh. I too have scalp pain, but right along my hairline in the front (actually only on left side)… apparently there is a branch there. Mine did not kick up in my scalp until I went in for a series of nerve blocks on the other branches…seems like it activated that one. Never ending, lol.
Yes, I have hemifacial spasms and diagnosed as such. The neuro wanted to put over 150 units of Botox in my face, which freaked me out and I backed away. I did let them fight my insurance company (and win) so if I had to do it, it is covered. But, I am scared of it.
Art helps…it just does. I have always been ‘artistic’, which is a lifeline for me. I am considering a blog…but that is as far as it has gotten, the thinking part. Hahahahahaha
I worship my pain specialist. He is realistic and truly helpful, even in misery, now, that pales in comparison to my misery of last year, pre-pain specialist.
Thanks for all of the great ideas and for sharing…
Knotty tree,
It is a wild cycle…and yes, frustrating. It is very possible and even probable (so says my pain guru)…hard to believe anything can even be noticed with TN, but fibro fights for a piece of the pie! TN always wins, but fibro gets an Honorable Mention…or a Participation Prize…hahaha…
Saber
Moxie said:
Yes, I too am fortunate these days to have understanding friends that understand good days versus bad days. When I had my accident I was still in my twenties with a 5 yrs recovery expected so a lot of my friends were still not yet settled. I hear you too about the fine line with the caregiver. We have pain and think its written all over and obvious only to know it isn't so we should have spoke up!
If you need to have a pity party have one! It sounds like you are on the healthy path when you know you are going to flare and don't force yourself to do things but pull back and take care of you.
Happily I am feeling no pain right now as I went on the tegretol and then neurontin so cocky I can relate to.
How do you work two jobs in so much pain? Do you have children as well?
Wow Sleopard, I know your response was to Bellalarke as more of an understanding of both TN and fibromyalgia. I can’t even imagine some what of a competition in terms of pain between the two. As mentioned I have the other issues as well but not as bad.
My other pains are pretty darn bad but usually I can get it back in control. My understanding is that fibromyalgia will be painful for a very long time?
I understand about TN resistant to being discussed as mine will flare when explaining it of the symptoms, especially when I wasn’t getting proper treatment. I think this morning upset it even though pain wasn’t present. I had very high BP when checked at the new Neuro appt. It is almost NEVER high! He was right about so many things about my situation. He also believes I have cluster headaches which I have suspected, like with you with the occipital neuralgia. He did feel it had more characteristics as cluster headache versus migraine.
That is good you work at home so it is less pressure hopefully!
I am hoping to be working again very soon! Being dependent on someone else just is not my style!
Hi Moxie
A week after I had my second novel was published was when I had my first attack, but since the pain was deep in my ear, I was misdiagnosed. It was a long struggle to find the right neurologist. My writing has only been in scraps these past few years but I’ve got some clarity these days and hope write another book. In the meantime I’ve done enough artwork for a fairly big show, but even getting something together for that will take huge effort. I will see where I stand after consult with NS.
How about you?
Bellalarke />
Moxie said:
Bellalarke- Interesting explanation of why you have facial spasms. There is so much information regarding TN on here especially. Also, sorry that you have to deal with this pain.
Do you paint, write or draw to help you through this or did you even prior?
Bellalarke said:
Hi Sleopard
So sorry you’re having these “extra” problems.
I’ve had fibro since '95 and TN since 09. Also glossopharyngeal neuralgia and hemifacial spasm that starts on the lip on the TN side and pulls my face into grotesque positions. So I’m wondering if your mouth problem is a kind of hemifacial occurrence. Like Scott, I manually work the spasms out. When I even feel one coming on I stop it as best I can. I do not want my brain to learn new patterns! Sometimes they happen when I’m talking too much, or when I’ve had too much irritation from being in the car, etc. they especially happen if someone asks me to explain what the pain is, or what TN is. My TN does not like to be discussed! (Does anybody else have this issue!)
I also have terrible scalp pain at the back of my head. My neurologist thinks this is “convergence”, where the TN pain spills into C2-C3 and gets it all worked up too.
My mouth spasms are not fibromyalgia related. It is from the VII cranial nerve. Either it is being compressed too, or again, it is spill over from V. I have a consultation with a NS Aug. 6th to get more info.
I think you need to let your pain specialist know what is going on. I make diagrams now, don’t trust that I’ll be able to explain properly. Also, I video the hemifacial spasms. Perhaps you could document your mouth symptoms too.
And yes, Moxie, reading, writing and art never let me down-
Bellalarke -
It seems being misdiagnosed is a theme among TN. I am sorry your diagnosis came so shortly after you saw success with your writing. Life can be so cruel!
I love to paint oil paintings. I exclusively use oil. I take an oil painting class 4 semesters every year. My instructor and class mates are amazing which is so helpful as they know sometimes I just don’t want to talk about stuff! And sometimes they don’t want to talk about their stuff! We just focus on painting, lol!!!
It seems too so many TN patients have a difficult time finding Docs that know about TN or willing to educate themselves.
The one I met with this morning seemed as if he read my mind or rather nervous system in terms of distinguishing between the TN, ON, my essential tremors and diagnosing me with cluster headaches that I suspected I have. All that being said, his bed side manner was HORRIBLE! lol! And I guess that’s fine if he is that perceptive and really does know his stuff. I am not looking for a friend or someone to hold my hand after 8 years of already dealing with all of this pain.
After all, my last Neuro had a really good bedside but told me my headaches that would wake me at four a.m. puking was allergy related, not cluster headaches!
Oh well, I can’t concentrate on that just the good days, eh!
Wow, weird common theme, I work at home and as a wardrobe stylist, art representative and ghostwriter! Bellalarke, we have a bit in common! Currently, I am compiling and narrating an art book for a famous musician. Lots of fun! I am able to do all of these things at my own pace, which is very helpful…
Moxie said:
Bellalarke - It seems being misdiagnosed is a theme among TN. I am sorry your diagnosis came so shortly after you saw success with your writing. Life can be so cruel!
I love to paint oil paintings. I exclusively use oil. I take an oil painting class 4 semesters every year. My instructor and class mates are amazing which is so helpful as they know sometimes I just don't want to talk about stuff! And sometimes they don't want to talk about their stuff! We just focus on painting, lol!!!
It seems too so many TN patients have a difficult time finding Docs that know about TN or willing to educate themselves.
The one I met with this morning seemed as if he read my mind or rather nervous system in terms of distinguishing between the TN, ON, my essential tremors and diagnosing me with cluster headaches that I suspected I have. All that being said, his bed side manner was HORRIBLE! lol! And I guess that's fine if he is that perceptive and really does know his stuff. I am not looking for a friend or someone to hold my hand after 8 years of already dealing with all of this pain.
After all, my last Neuro had a really good bedside but told me my headaches that would wake me at four a.m. puking was allergy related, not cluster headaches!
Oh well, I can't concentrate on that just the good days, eh!
I have bilateral TN. Left side for 6+ yrs. My right side pain came in December. I had exactly what you describe for a week before the more typical TN pain came roaring in.
That is comforting (in only a way that those of us who suffer from this can understand)… Thank you for sharing, yes, I can feel the TN train heading my way, flares coming and going…I know it will take hold and shake me like a dog toy at any moment.
Sorry I dropped out for a bit…traveling with daughter and six week old grandson to my place for the holiday long weekend up here ( BC, Canada). I can hardly keep up with this conversation right now but so interesting to find a small cluster of other women with similar symptoms and talents!
Sleopard, that is very exciting, ghost writing for a famous musician. I wouldn’t mind finding some work like that myself, this illness has drained me in more ways than one…
Moxie, painting is my go- to when I need to get out of language, either written or spoke. The satisfaction of solving a painting problem is so absorbing. Do you find the oil paints or the solvents, etc. bothers your symptoms?
I am sitting next to the baby while my daughter sleeps, just listening to his breathing is very soothing.
Bellalarke, absolutely no worries! Being with family is so important! If I were around a newborn no doubt I would want to spend almost every moment with him! Enjoy lady :-)
Painting in my studio and at my classes is my sanctuary! Well said about a painting problem is so absorbing! I do a lot of expressionism so it realky gets my emotions in check. I would reccomend it to anyone with ATN/TN. Sometimes during class I will participate in the projects set by the instructor so I will do realism or even tight realism. These are not my favorite as painting the right size tree next to the right size house/building for example isn't always very relaxing for me. Some people really enjoy that though and kudos to them!
I use large canvases and use artist grade oil paints. Sometimes I use linseed oil but regularly I do not unless I want extra texture. I always use odorless thinner. My thinner does not make me symptomatic. Thank goodness! When in class though some students will bring older (20 yrs.) or even thinners they are not supposed to, will really set things off for me. I do understand the supplies are costly but all of us are good about sharing and instructor tells them not to bring that stuff but they still do. Oh well I just work around it and make my own comfortable space.
What type of painting do you do?
Sleopard-sorry to take over your thread!!! Is the knot better? I hope so!
Sleopard, I think you for sure have talent being a wardrobe consultant, a writer and repping artists! All artists think that they could have more creativity,
Happy writing!
Sleopard41 said:
Hello, ladies!
Talk away! I do not paint, I wish I had that talent..I just represent those that do!
Maybe it’s a case of us wanting something we can’t have…like, for me, straight hair, cute little feet, and the ability to paint…lol. I would also love to be ‘crafty’…lol…Pinterest showed me how much of a FAIL I am, in that regard. I would love to see examples of y’all’s work.
I hope you are feeling at least a bit better today? So sorry you are having a flare and this new symptom!
I can really relate about wanting straight hair as mine is soooo thick and very curly! lol! I live in Michigan so we often have high humidity and with the nerve damage in my wrists/forearms it is nearly impossible to straighten and not worth the pain as I Ilike it curly and so does my husband.
I guess in my age/maturity I have decided just to be comfy.
Very soon (maybe) I will post my art. Definitly shy sometimes showing it but I think I will since you show such an interest.
Pinterest puts me in my place as well! Holy cow am I so not crafty in comparison to the ppl who post there! I do prefer to paint versus craft so I guess that is ok! I tried to scrap book once..........FAIL! lol!
:-)
Sleopard41 said:
Thanks Moxie!
Maybe it's a case of us wanting something we can't have...like, for me, straight hair, cute little feet, and the ability to paint...lol. I would also love to be 'crafty'..lol...Pinterest showed me how much of a FAIL I am, in that regard. I would love to see examples of y'all's work.
Just checking in on you talented and creative ladies!
Bellalarke, I know you recently had surgery so I really hope you are feeling well and even better you have a remission!
Have you done any writing during recovery?
Sleopard, long time! I hope you are really well! I hope the rest you took helped your Fibro and TN! Please let me know how you are!
Those knots stink don't they? My cheek is sometimes in a constant knot all day long. It's very annoying, and reminds me of a labor contraction on my face,, pain and all. Sorry that you also have to deal with fibro. I do not have it but my sis does, and I have seen her struggle with fibro for years.
I, too, have described my cheek as having labor contractions. For the past several days mine has been flaring up terribly with the shocks. My left cheek is as red as a cherry. Today, I just decided to take a darvecet(left over, but it's what works for me, can't get anymore so I use them wisely. I needed relief today) every 4 hours and surprisingly I have had a pain free day. You know what a blessing that is. Of course, I have been in the recliner or the couch all day and thanks to football all day I didn't have any need to talk. I am mentally ready for surgery after 13 years of struggling and missing out on happiness. I have had my family dr. connect me with a local neurologist that I am thinking will connect me with one that does the MVD surgery after he does the necessary testing. Has anyone dealt with drs. in colombus, Ohio? My brother and sister in law have both had back surgery from a dr. that says he does this surgery and they seem to really like him. Not really sure of the method I should use to find the dr. I know I would have to travel.
Hey Jo-- sounds like a good time for surgery...so many people have lasting success! I guess the key is to find someone who does LOTS of this surgery which may mean traveling a bit. I have heard good things about the docs at University of Pittsburgh and also Johns Hopkins in Baltimore has a tn clinic. Depending on where you are in Ky-- pittsburgh might not be too far away... don't know anything about colombus myself... prayers to you !!
