Keeping Track of Symthoms vs. Med Side Effects

With the help and support you fellow Chiarian's , I started keeping track of symthoms in a note book. I write in it about 4 times a day right before I take my meds. Last friday, I had a cervical MRI, they took me out of the machine half way throught the test because they said i squeezed the button, It happened to be that when they took me out I could not feel my arms or legs, they were pins and needles and hurts very badly.(I usualy get numbness but not painful like this)Sat, the same thing ALL DAY! I could not sleep i was waking up every hour shaking my arms to "wake'em up" .Now sunday, I was putting on my makeup and i could not feel the T-BONE part of my face, it was numb. Monday morning: My whole face was numb! - While writeing all this in my notebook, I called my doctor immeditly on monday morning crying.It turned out to be just a side effect of TOPOMAX. They changed the dosage on monday , but im still getting numbness and pins and needles more than normal. I Cant tell whats a side effect or if its a new symthom.

Has anybody had a similar reaction to a medication like this?How can we start to identify it as an new symthom of progressing symthom?

Kristen, I've never taken Topomax, but I have had the numbness in the hands and fogginess, and sometimes confusion. Before my surgery it was much worse; I couldn't bend over to pick something up off the floor or I would kind of black out or feel like l was going to pass out. I still have a little pressure in my head if I bend over, but it is much better than before the surgery. Before the surgery it was not unusual to have fogginess in my head; I would sometimes come out of a store and it was a real struggle to remember where in the heck I parked my car. Even, since the surgery, I will sometimes get a little numbness in my hands and arms, particularly my thumb and the next two fingers. I think I remember reading somewhere that numbness in those fingers IS related to Chiari. I'm sure there is a connection because when your brain is squooshing the nerves, everything has to be affected. Before my surgery I would also sometimes have drop falls where I would just fall straight down - not too many times but a few. I would think the doctor could take you off the medication for awhile, maybe substitute something else, to determine if it the symptoms are caused by the medications. It all sounds like Chiari symptoms to me though....you know that "quacks like a duck" thing! But Chiari DOES mimic so many other things....that's why some of us who are older took so long to get diagnosed, I guess.

Hugs

Shirley

Kristin,

I had a similar thing happen with the Topamax. She started me on a small dose and as far as I know, no side effects. Then she upped my topamax to 50mg/day all of a sudden I was getting numb everywhere way more frequently than usual. Now on the other side of that...I was getting more frequent numbness/tingling before I started the topamax altogether...but it was like it jumpstarted it and made it go. I never made the connection between the two..nor do I even know if its just a coincidence or really the side effect mixing with my symptoms.

I went to see a neurologist because the numbness was getting ridiculous. Other symptoms like my balance and perception were getting worse too. Everywhere was getting it and alot. He said it was the topamax. Right away before I had a chance to say that I had the problems before I started taking topamax. I told him then that I had the problems before and they were occuring more frequently...He still thought it was the topamax not the CM/SM...he did all kinds of nerve testing on my extremities...His suggestion was to cut my dose in half and take it twice a day instead of all at once so it spread it out. *knockonwood* the numbness and tingling have went down a bit...I don't know if it was changing that or not...I'm still getting the same amount of mgs...

Abby...I never knew that about the water. I've been drinking a lot of water lately (I'm trying to stop drinking so much soda) so I wonder if that could have something to do with affecting me taking the topamax and the side effects.

There is so much you just don't know. Its all just guesswork. I like the idea of the symptoms notebook with meds! I think I will add that to my chiari journal...maybe split it in half or have 2 notebooks.

Hi Kristin:

I will tell you my experience with Dopomax or I mean Topomax!!!!! I too had the facial numbness/tingling along with increase neuro issuse with both ars ams, hands, legs and feet..Plus dopey feeling..my wordfinding skills really took a hit as well.

My doc said all these were from Topomax and would stop once i was off the med..she was 100% right...it took about 1 week from the time i stopped taking it for the symptoms to go.

t

I also had a horrific experience with Diamox...after about 1 mth I suffered a SEVERE depression, none like I have felt before..

Meds now scare me..mainly b/c of the emotional side effects..b/c after the above meds the neuro opth me onomologist

put me on Zonisamide(anti seizure med) used for pressure in the head..worked great for 1.5 mths...then BAM..depression like Diamox....actually wanting to die..day dreaming of it..hoping to go sleep and not wake up....put 2 and 2 together and i stopped that...didn't bother calling the doc......mentally now feel so much better..not day dreaming and wanting to die...

meds for me are scary....I had taken MS Contin, Oxy Contin, Percocet, Soma and never slurred a word....give me an anti nausua drug and i am telling you about the flying monkeys in my back yard!!

Moral of this LONG post (sorry) is that ever body handles meds differntly.....i guess that is why their are so many out there(??)

Kristin

I take Topomax too, 75mg in the morning and at night. I get numbness and tingling bad in my feet and my scalp on and off throughout the day. I haven't had any problems on my face or arms with it though and I haven't had any depression with it either. For me it helps overall I guess and the feet and scalp issue is annoying but not enough to make me want to stop taking it... at least for now. I do agree though, that it is very hard to distinguish med side affects vs chiari symptoms. I battle with this myself sometimes. Like others have told you. Just keep track of your symptoms and talk to your doctor. Take care.

Jenny