new symptoms thoughts please?!!!

[thornton8000]

YEsterday and today I've had some new issues and some have been on going after reading through my journal thanks naka for telling me to keep going with it!
1) everytime I sit no matter what kind of surface my feet or left foot mostly goes numb
2) last night my lower back felt like it was on fire for no reason!
3) my fingers have been going numb for no reason (I've been on the same dose of topamax for months now and am used to the dose)
4) I've been repeating myself again
5) I've been having trouble finding my words (aphasia) and I hate when ppl put the words into my mouth and not let me try to get the word out myself
6) when all these started happening again or just started my loving little dog started going nuts with licking either my hands or feet or my forehead and I mean NUTS! ( he's a licker by nature but I mean more than normal ie he'll go on forever 5-10min if not more and with everyone else it'll be a min or less my wife and kids.
7) yesterday at the MOA a infloor light passed my left eye and caused me to have a mild seizure I was against a wall with my cane I was dizzy off balance and proped against the wall for a few min till everything came back to normal and afterwards had a migraine that is still going on today.
8) this morning I woke up with mild urination still had a migraine took all my meds like normal, felt like I was hit by a bus, jaw was sore back was more sore than normal all day I've felt off, repeating myself feet been going numb, waves of goose bumbs 3x lasting about 4-5 mins(very new to me) and I just cant seems to wake up and thoughts from the :brain:here?
any thoughts help would be great so I can be better ready for my apppointment on the 21st and 26th of this month!
Thank you so much everyone!
Mike and family

 

[julie wishes]

I forgot if you said in an earlier post if you've just changed meds or something? Any changes preceding these new issues (besides the light)?

 

[thornton8000]

topamax 3-4months in now keppra about 16-17 days ish I've noticed that certian photosenitive issues have come into play ie dang old navy pole is the devil to me, certain vidoe games, tv show cut sences (prison break my new poison) I have to close and cover my eyes when it does it's little shooting and cop car and when it changes colors and shows the area and has fast moving images it gives me a migraine and I have small jerks if I dont cover my eyes fast enough before it happens, worse in real life if I see a cop car with its lights on and I notice I get abcense seizures every now and then not as much as before, which is why I dont drive alone, since my old epi gave me a diagnosis of PNES which 90% of all my seizures stopped with the addition of keppra if my current neuro would adjust my meds titrate up my topamax and keppra things would slow down again but until my new epi appointment he will not talk to me about med adjustment so hence my 2nd opinion with a new neuro on the 21st! I'm trying to find one that will listen to me about what is going on with me not just what does or doesn't show up on a machine.

thank julie!

Mike

 

[valeriedl]

I have alot of the same problems as you do, mostly with forgetting my words and always repeating myself.

I also have problems with my back and alot of the time. My lower back will hurt like crazy, and that's putting it softly. I'll also get pain that will sometimes shoot down my leg making the leg and/or foot numb. I think I had something pinched back there that is causing it. I started to see a chriopractor for that and it's helped alot. My back really doesn't hurt any more. I also have a problem that my right calf is numb, it always feels like it's asleep. I've asked several dr's about it but they don't know what is causing it. The chiropractor doesn't even know what that's from.

I have two cats and when I have a seizure one of them will get on me and won't move until HE thinks it's ok for me to get up. I usually don't know when I have a seizure but the cat sure does. I don't know if you could be having a seizure and your dog is letting you know and that's his way of telling you?

I wonder if you may have had a seizure when you were sleeping and that's why you felt like that when you woke up?

Just keep track of all your questions and anything else that you think you might want to ask the dr, no matter how stupid you might think it is. It could turn out that one of these stupid things may end up being something leading to an important thing.

 

[julie wishes]

Is there a group on here for people with back injuries? Mike you should read my posts. You will see that I pretty much had the same stuff as you with Keppra. I didn't write it specifically, but things started bothering my eyes on Keppra that didn't bother them before. I have posts everywhere. Sorry. But I'm starting to think those of us that don't do well with Keppra get all the weird side effects, not just one or two.

 

[thornton8000]

Thanks Valeriedl:
I saw a chiro but will never will again, there are good and bad in every field and I found out that what happened to me caused me to have a TIA and since I wasn't able to get out of work thanks to my bossit wasn't able to be caught on a MRI or CT so it is a suppossed TIA and it never helped my back I've done so many rounds of PT and I'm a OT grad :rofl: And yes most of my seizures are nocturnal onesI have some SPS during the day but not as bad since the additon of the keppra roughly 17 days ago when I was 15 I had a bad bike accident and a MD on sence said I had a seizure that lasted 5 min before they could put me on the back board and I had 3 subdural hematomas and was placed in a chem induced coma to reduce the sweling, and my neuro said that, that info on my medical paperwork was not important since it was 17 years ago and now i'm having seizures or as he calls them "spells" and they didn't start AED's like they should have with TBI patients with me, and the keppra pretty much stopped my seizures cold until my body got used to the dose i'm on and now they are slowly starting up again.

Mike

 

[LJ-Bain]

I found that with Keppra it was a godsend and a little devil sitting on my shoulder.
Suddenly things felt clearer and my seizures were shorter but new seizures came along that I had never experienced before.
Keppra was like a gift that had it's own gifts to share!
I had seizures that seemed like normal simple partials and complex partials but then I started to have some automatisms thrown in and staring spells. They were tiny though and not every day at least.

What seems like glaringly important items like tias, subdural hematomas with chemically induced comas can be brushed aside by drs.
All they see are eeg results, ct results and mri results.
I truly hope you have someone in your corner in the medical world who truly listens to you and answers your questions honestly.
I hope they find the right rx combo for you and that maybe one day you can shake the pnes off your record like the way they brush aside your other historical injuries.

 

[valeriedl]

I was a little leary about seeing a chiro at first. After 9 years of going to several different dr's and getting x-rays, CAT scans, MRI's then being told there was nothing worng with my back they would just have me do stretches and give me muscle relaxers and pain meds, even shots in my back, nothing helped at all. For some reason pain meds do nothing for me, I don't know if it's from the epilepsy meds or just from having epilepsy in general. All the muscle relaxers did was knock me out and I slept all the time.

The pain would be so bad that I couldn't even move. If I would take a step the pain would shoot clear down my leg with every step. My back would clench up and I couldn't bend over or stand up. I even had to go to the ER on a stretcher a few times.

So after going through all this for that long with abolutely no help, because there was nothing wrong with my back - as the dr's said, I figured that I couldn't make things any worse than they were by going to a chiro.

I went for about 3 months 2 times a month and I could see improvement. I went down to once a month for the next 3 months and actually canceled my last appointment, which is going on 2 months now. My back doesn't hurt at all. It actually feels weird that it doesn't hurt any more because I'd gone for all those years with the pain.

The chiro that I went to is one that alot of the local dr's go to so I had some pretty good trust in him.

I still have that numbness in my calf but it's not really too bad. I can live with that as long as I can move around with out being in pain.

I hope you get things worked out with you.

I do notice that I'll have my hips aching, usually alot in the morning when I get out of bed. Once I get moving around I'm ok. I know that some of the meds cause joint pain and I don't know if I'm on one of them. My PCP also told me that I was getting an early onset of arthris (this was about 5 years ago). He didn't think that was causing the back pain at the time.

So I don't know if it's the meds or now that it's been a few years later and it could be arthris that's setting in. Arthris runs very bad in my family.

 

[thornton8000]

I hear ya on the arithritis same in my family i've been tired all day and sore from my seizure this morning, the pain hasnt gotten any worse since ive been on the meds or any better i was on gabba which was also to try and help with the pain but it didnt do anything I've tried all the gambit of standard pain pills and otc and nothing helps and been told surgery and shots wont help me in the least so I'm in a place of where to go now so on omnday I see another back doc and going to lay everything on the table that I and my neuro have found out and my extensive digging online have found out and going to beg for test after test after test to find out what is going on and get answers, and will keep everyone updated after I see him!

 

[valeriedl]

Usually the day after I have a seizure I'm tired. If it's a bad one or if I have more than one in a day I'll sleep most of the next day. Luckily my husband understands this and is used to it, he actually expectes me to do it.

Defently let me know if you find anything out! Good luck!!!!!!

 

[thornton8000]

I'll be letting everyone here know what I find out asap you all are my 2nd family and have been so very helpful and supportive and I;m new and you still are willing to help me and that means alot to me so I;ll def keep ya;ll posted when I hear something when the new neuro and new epi and the new back doc lets me know what they find or figure out!

Thanks mike

 

[julie wishes]

Good luck Mike. I've been researching doctors all day. Found out there are comprehensive epilepsy centers. Some of the docs there specialize in neck and back injuries as well, and sleep docs, etc. All the fields, represented under one roof. Im going to check them out. Most of them are located at the hospitals. And surgery is a large focus, but they have the latest in diagnostic equipment and I can say no to surgery if I don't think its right for me.

Mike collaboration of your new docs will be an important piece. Make sure they all know other docs are on the case, it may spur them to work harder if they know someone is checking their work.

I wish you the best of communication skills for your upcoming appointments.
:wave:

 

[thornton8000]

thanks julie! and as I layed myself to finally got to bed @153am 17 years laterI think I ginally put all the pieces together on my bike accident! (now I'm not 100% positive on everything since I was not awake) but I'm forcing myself to try and remember things that I did with ppl after my accident that my mom and dad made me do to thank the ppl that made sure I did get back on my bicycle again even tho at 1st I was scared after they told me what happened tho I couldnt remeber, I'll make a new post about it later today for everyone to read and please give thoughts as on the 21st it'll be printed for my new neuro to read!
thanks everyone!

mike

 

[Nakamova]

Hi mike --

I think you mentioned that you seem a bit more photosensitive now? Can you try giving up video games and television altogether, and minimizing computer usage (except for CWE of course!) -- just for a few days, as an experiment to see if you feel better as a result.

 

[jyearta]

After having an MRI, it turns that back (lower) is from arithritis and it sowed one bulding disk. I currently going through Phs.Ther. and it helps a lot.

I hope you can get an appt. for an MRI.

 

[thornton8000]

Naka-
I haven't played any video games now in over a few months and with tv or anything movies it's only commerical cutsences fast moving multi colored sences, cause me to have, this this feeling of shaking down my left arm and leg and if it continues my seizure would continue into a sps, my bad ones (thankfully only have happened at night)!
but I have noticed and have been reading on here that I should look into clip on's for my glasses for when I'm in walmart (floresent lights casue me minor issues) it hasn't been as bad since adding keppra but now my body is getting used to it and needs to be adjusted some but current neuro wont do anything.
jyearta- I have a ton of back problems and they keep changing what is wrong with me it seems after every ct/mri except that I have spina bifdia in my S1 and they still cant figure out the main cause of my back pain but I may have I hopefully will find out later today when I meet yet another back doctor at 2:45pm today!
oh the joys of having 4 appointments in 2 weeks and I'm going to "ahem" nicely make him run a lot of test that they havent done to test for Arachnoiditis and also MS and possible lymes which means a lumbar puncture but hey if I get answers life goes on and also I just put up a new post last night J if you want to know a little more back ground about what I've been through with seizures and accidents its not to detailed but its's a work in progress since i cant remember everything and things are broken and I'm putting 2 & 2 together and trying to make 4 and its slowly coming together same with you naka read it and let me know what you think.

Thanks mike

 

[jyearta]

I hope you get some answers and most of all relief for all the pain today.

 

[thornton8000]

thanks I've been hoping for that for the last 17years now so not really holding my breath but still hoping!

thanks mike