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Sicili...
Sicili...

Bump in the road...

While I've got some nice progress to share, the last few days/nights have been a bit rough for me. 

The good news is, I'm down to my last 50 mgs of Dilantin per day.  To recap......Soon after my VEEG in late February of 2007, the move to switch from Dilantin to a different AED began. As a result of 40 years of 400mgs Dilantin per day, I was dealing with peripheral neuropathy, osteoarthritis, osteopenia, hyperplastic gingivitis and bone loss in jaw.  My doctor and I agreed that the risks posed by my medication were now outweighing the benefits, even though tonic-clonics were under control. Once my VEEG showed activity in left temporal lobe, it was decided that Keppra would be the drug of choice to switch to. Before any Dilantin reduction would occur, I would start introducing Keppra into my system.

BAM.

Where did that train come from ????

Adding a new drug onto a medication which had already contributed to years of lethargy and fatigue hit me pretty hard.  The first month on Keppra was awful in many ways.  It truly was an effort to accomplish much of anything. I found I had to save all my energy for teaching for I couldn't risk letting professional obligations being unmet. Upon returning home each day, I would resign myself to the couch in the family room, totally "shot". Family fended for themselves much of this time , as the already busy "hubb-bub" of family life seemed to be disordered and out of my control.  However, what was far worse, was that for some reason, the peripheral neuropathy in my legs began to truly torture me. What was once a mere tingling in the toes or numbness alternating with electrical shocks to the feet and lower legs, was now such intense pain that it would wake me from a sound sleep. The neuropathy, in turn, impacted upon osteoarthritic symptoms. Walking became painful and next to impossible without a cane.  Was the reduction of Dilantin or the introduction of Keppra aggrivating the PN? Was it both? No one seemed to be able to tell me.  Friends in the chatroom were wonderfully supportive. If it hadn't been for Tim encouraging me to stick with it, I think I would have told my physician I wanted "off" Keppra.  Thankfully, he was correct. My body did indeed adjust and symptoms lightened. 

Throughout this time, I tried to keep our objective in mind: To switch medications without experiencing a seizure event.  My epileptologist would slightly reduce Dilantin one week, and then, several weeks later increase the Keppra dose. Several weeks after that we'd alternate again, reducing Dilantin once more, and so on. Only every now and then would both medicines be adjusted at the same time. It's proved to be an effective strategy. While I've experienced several simple partials, understandably due to shifts in dosages, I've not had any tonic clonic seizures.  

Mobility was still an issue in late September (See "Apples" blog entry).  After reading the advice of one exercise guru, who succinctly stated, "....Move or die....", and reading about the benefits of rowing as a low impact exercise that combats osteoporosis, I decided to give rowing a try.  I tried rowing regularly at the gym during October, and in early November purchased an indoor rowing erg for home,so that I'd have no excuses during the winter months about not getting to the gym.

I've not used my cane since late October. I was using it at the beginning of "La Boheme" rehearsals. By our last performance, my cane was packed away. 

 All was well till about 2 weeks ago.  As we're approaching the end of this med switch, my medince changes have involed simultaneous reductions of Dilantin alongside increases of Keppra. In roughly the last 6 weeks my Keppra has been increased 3 times.

My legs are screaming at me again. I'm resisting the cane. The past few nights I've woken to horrible leg pains and this is affecting my sleep, which is my big seizure trigger.  I would not have written about any of this, had I not "heard" a yound man, new to the chatroom last night, explain that he had terrrible ataxia and leg pain when Keppra doses were increased for him.  Upon having the doses lowered, his symptoms subsided.  I'm also feeling very weepy. I don't know why and I wonder if the med changes are involved.

I'm just going to hang in there and hope the pain subsides. My next med changes won't happen until I see Dr. L on January 16th.

Please forgive my long winded mouthful of verbiage ......

Ciao per addesso,

Anna

 

By Sicili... at Sun, 01/06/2008 - 6:57am | 104 views | 4 comments

Add your comments

I HAVE ALWAYS THOUGHT THAT YOUR NAME SUITS YOU, YOU AND YOUR NAME ARE BOTH SO BEAUTIFUL.

I TOO HAVE PERIPHERAL NEUROPATHY, ALONG WITH FIBROMYALGIA. I WANTED TO TELL YOU THAT KEPPRA AND GABEPENTIN ARE BOTH MEDS PRESCRIBED FOR P.N.  AND FIBRO. I TAKE GABEPENTIN AND IT IS HELPING THE PAIN TO SOME DEGREE, BUT I HAVE LIVED WITH THIS PAIN FOR SO MANY YEARS, I HAVE ADAPTED TO IT. MY JAW PAIN IS ALSO HELPED BY THE MED. THE GABEPENTIN IS ALSO HELPING MY SEIZURES TO A POINT WHERE I AM HAVING HARDLY ANY. ANOTHER THING I WANTED TO MENTION REGARDING THE PAIN, I HAVE BEEN GOING TO AN ANESTHESIOLOGIST SINCE 1995 FOR THE PAIN, AND GETTING INJECTIONS FROM THE TOP OF MY HEAD TO LOWER SPINE, ARMS, WRISTS, ETC. IT HAS BEEN A LIFE SAVER FOR ME. I REALLY DON'T KNOW WHAT I WOULD DO WITHOUT MY PAIN DOC. I DON'T THINK I WOULD BE ABLE TO MOVE WITHOUT THOSE INJECTIONS.  PERHAPS THAT IS SOMETHING YOU WOULD WANT TO CONSIDER. THE GABEPENTIN REALLY KNOCKS ME OUT ALSO. IT IS ALL I CAN DO TO WAKE UP AND MAKE MYSELF STAY UP ALL DAY.

HAVING SAID THAT, I WANT TO ADDRESS THE BONE LOSS IN YOUR JAW. I HAD 3 BI-LATERAL SURGERIES ON MY JAW, AND THE FIRST ONE DESTROYED MY JAW. I HAVE NO CONDYLES AND SINCE THE LAST TWO SURGERIES WERE SCREWED UP, I HAVE BONE RUBBING ON BONE. (THE TEMPORAL AND MANDIPULAR BONES) MY ADVICE IS TO NEVER EVER HAVE ANY SURGERY ON YOUR JAW. DOCTORS STILL DON'T KNOW HOW TO TREAT THE TMJOINT, AND THERE ARE MANY HORROR STORIES OUT THERE. THERE ARE ALSO MANY DOCS WHO CLAIM TO KNOW WHAT THEY ARE DOING, AND DO NOT. AS FOR YOUR OSTEOPOROSIS, MINE HAS BEEN DOWNGRADED TO OSTEOPENIA DUE TO A DIET OF NO MEAT, PLENTY OF COMPLEX CARBS, DAIRY PRODUCTS AND FRUIT AND VEGGIES. YOU CAN INCREASE YOUR CALCUIM LEVELS BETTER WITH FRUIT THAN DAIRY, WHICH I DIDN'T KNOW UNTIL LAST YEAR.

HAVING GONE THRU MANY SURGERIES AND MED CHANGES, I WOULD GUESS THAT THE WEEPINESS IS CAUSED FROM THE MED CHANGE, BUT PLEASE BE CAREFUL AND MAKE SURE THE MED IS NOT CAUSING DEPRESSION.

I SINCERELY HOPE THAT YOU START FEELING BETTER SOON. GOD BLESS YOU, JAN

 

ROCKNROLL

Hello Jan,

Thank you for sharing your experiences with these issues. It was awfully sweet of you to take the time to express all that you did.

Re: Bone loss in jaw... I've read some disturbing articles that basically say what you did. Avoid having teeth pulled, dental surgery, etc.  It all sounds so dire and frightful.  However, my doctor stated prior to my surgery last February that the great irony was that I would experience some additional bone loss if I had periodontal surgery, but would experience even more if I did not. Some Catch-22 eh?  I couldn't go without the surgery. My gums were in bad shape, despite regular dental care. Thankfully, one quadrant healed well, but the left side did not.  I will most likely have to have some more work done. I've got 9 crowns now and will need to have yet another this spring. Whattayagonnado?

One desired effect of coming off Dilantin is happening. My gums aren't anywhere near as swollen as they were, which is good, but now we can see the post and cores of the two front crowns I gained after breaking my front teeth off in a seizure 27 years ago.  I'm told by the dentist that because of their age, my insurance shouid pay for most of the replacement.  I get kinda nervous about the relationship between dental health and heart health, so I realy want to get thinks taken care of without risking any more bone loss.  Perhaps I should get another opinion.

I too have TMJ on my right side.  I'm fortunate in that it rarely causes me any pain. What it DOES do, however, is click and crack constantly.  I've been told to forget any medical intervention there. Apparently its NOT an easy surgery and the benefits are questionable at best.

I'm being sent for a neuropathy assessment sometime after my March visit to Dr. L.  He wants to see if things are any better with the Dilantin reduction.  Makes sense. I just dislike being poked with al those needles in my muscles.  .

I've sought pain management once before and the cortisone shot to the joints in my feet really helped.  It may be time to have that done to my right foot again.  I'm limping, and I think the bitter cold is the culprit.  I'm trying to stay away from additional meds for pain.  For now, Aspirin helps me get by.

I'm glad to hear your seizures are being welll controlled with the Gabepenten. I hope that continues for you. 
That's super news.

Hang in there,

Anna

 

 

 

 

 

"...Only God never changes." St. Theresa of Avila

Sicili...

HI SICILIANNA, I LOVE YOUR NAME SO MUCH, I FIND I WANT TO USE IT AS OPPOSED TO ANNA. 

YES, IT REALLY IS A CATCH22 SITUATION. I WAS TOLD NEVER TO GO TO A DENTIST EVER. WHEN I HAD DENTAL INSURANCE, NO DENTIST WOULD WORK ON MY TEETH BECAUSE OF THE CONDITION MY JAW IS IN. THE LAST DOCTOR I SAW ABOUT MY JAW WAS IN 1992. HE WANTED TO DO SURGERY, AND PUT TISSUE BETWEEN THE BONES THAT COULD POSSIBLE STOP THE BONE FROM DETERIORATING SO FAST. HOWEVER, THERE WAS NO GUARANTEE THAT WOULD HAPPEN. ALSO, HE SAID I COULD HAVE MORE PAIN. NO THANK YOU. HE SAID I ALSO NEEDED TO GET THE REST OF MY MEDICAL PROBLEMS UNDER CONTROL, AND THAT HAS NEVER HAPPENED.  DUE TO LACK OF THYROID MEDS WHEN I NEEDED THEM, ALL THE TEETH ON THE LOWER LEFT SIDE OF MY MOUTH FELL OUT. I NEED WORK ON ALL THE TEETH ON THE OTHER SIDE OF MY MOUTH. I DON'T KNOW WHAT TO DO. I HAVE NO BITE, NO BONES TO KEEP THE JAWBONES FROM MOVING BACK AND FORTH, AND THAT MAKES IT MORE PAINFUL. THERE IS ONLY ONE DENTIST WHO IS RECOMMENDED TO GO TO HERE, AND TUCSON IS ONE MILLION PEOPLE! HOWEVER, HE IS A MEDICARE DENTIST AND I CAN'T SEE HIM BECAUSE I HAVE NOT BEEN ABLE TO WORK SINCE THE FIRST BRAIN SURGERY IN 1977 AND THEREFORE I AM NOT ELIGIBLE FOR MEDICARE. THIS ODYSSEY WITH MY JAW STARTED WITH THE PROCEEDURE USED TO DO THE FIRST BRAIN SURGERY......NEW PROCEEDURE DAMAGED MY JAW.  SO, I AM AT A LOSS AS TO WHAT TO DO. I DO GET INJECTIONS IN MY JAW, FROM MY PAIN DOC. AND MY FACE. THE 5 AND 6 CRANIAL NERVES WERE DAMAGED, AND CAUSED A CONDITION CALLED HEMI-FACIAL SPASM. THAT IS FINALLY UNDER CONTROL ENOUGH THAT I CAN GO WITH INJECTIONS IN MY FACE FROM MY PAIN DOC ALSO. AS LONG AS ALL YOU HAVE IS THE NOISE AND NO PAIN, JUST DON'T EVEN THINK ABOUT ANYTHING EXPECT FINDING A VERY GOOD DENTIST WHO KNOWS WHAT HE IS DOING SO HE/SHE DOES NOT DAMAGE THAT JAW. NO ONE SHOULD EVER HAVE MORE THAN ONE TOOTH WORKED ON AT A TIME.

 GOOD TO HEAR THAT SOME OF YOUR PERIODONTAL WORK IS HELPING. GOOD LUCK WITH THE OTHER WORK YOU NEED DONE.  

AS FOR THOSE NEEDLES IN YOUR LEG, THERE ARE THE ONES I CAN'T FEEL AT ALL, AND THE OTHER TEST THAT HURTS. I CAN'T REMEMBER MUCH MORE ABOUT THOSE TESTS, BUT THEY WERE LONG OVERDUE. I AM WONDERING, SINCE YOU CAN GET BY WITH ASPIRIN, IF THE FIBROMYALGIA I HAVE IS CAUSING SO MUCH NERVE PAIN. CATCH22, AGAIN, HUH! I TAKE 3 PAIN MEDS, PLUS THE GABEPENTIN FOR SEIZURES AND PAIN, AND GO EVERY TWO MONTHS FOR INJECTIONS, AND MY DOC SAYS, AND I KNOW, HE JUST CAN'T INJECT ME EVERYPLACE I NEED INJECTIONS, THERE ARE SO MANY. THERE IS A LIMIT TO THE AMOUNT OF STEROID THAT CAN BE USED, AND IT IS A VERY SMALL AMOUNT.   I STILL HURT ALL THE TIME.  IT IS NOT LIKE GOING IN AND GETTING AN INJECTION OF JUST STEROIDS.

HEY, ANNA, SINCE WE HAVE SO MUCH IN COMMON ANDIF  YOU HAVE TIME, COULD I SNAG YOUR EMAIL ADDRESS FROM SYLVIA AND WRITE YOU? I DON'T KNOW IF YOUR EMAIL ADDRESS IS PUBLIC, AND DON'T KNOW HOW TO FIND IT IF IT IS!  I CAN TELL YOU ABOUT MY 15 YEARS IN CATHOLIC SCHOOLS WITH THOSE ABUSIVE NUNS AND PRIESTS.........THERE WERE SOME GREAT ONES TOO. I KOW YOU TEACH CATHECHISM AND ASSUME FROM THE REFERENCES TO ST. THERESA, THAT YOU ARE CATHOLIC. GOD BLESS AND KEEP YOU SAFE AND FREE FROM PAIN AND SEIZURES, WHILE YOU WORK WITH YOUR DENTISTS AND CHANGE IN MEDICATION................I JUST WROTE A BOOK!!!  JAN   

 

ROCKNROLL

Hey Sici,

Sorry it took me so long to finally get to respond to this. I did not forget about you!! I wanted to wish your luck on your upcoming med change and also your upcoming appt. I know we got to talk a little about the leg pains and such in the chat the other day but I also have that with Keppra...I wonder if that is not a common thing.  With me it is not everyday but it does come and go.  

So best of luck to you I hope things go well and the Keppra works out! *hugs*

 

Sassy 

SassyM...

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