Ange76
11-19-2008, 03:43 PM
Hi,
I have a question that I wanted to see if anyone here might be able to answer.
I had a grand mal seizure in March of this year and have since been diagnosed with epilepsy (no one certain type diagnosed yet but I feel it's closest to photosensitve). My neurologist felt after reviewing a list of complaints I had following the seizure that I may have Fibromyalgia. This was also agreed upon by my epilepsy specialist. I saw a rhuematologist who basically told me I needed a phsychiatrist (I know...big surprise) and have since decided I'm going to have to try to figure things out for myself before trying another doctor. I had been told that Fibromyalgia has been known to be linked to/cause seizures in a rare few! Also, there can be severe light sensitivity with Fibromyalgia. When I get in bright light I get a bad headache, my eyes feel like their swimming around, I'm very dizzy and after a bit I look and sound like I'm drunk (I either slurr my words and/or stutter and it feels like everything just slows down). My neurologist and epilepsy specialist felt this had nothing to do with the seizures OR my meds (I take 360mg of Dilantin per day right now). The extreme light sensitivity coupled with my list of ailments (which include the following: tingling of my scalp on the left side, tightening of my forehead, severe headaches (which sometimes include nausea and can last for days at a time), crampy/achy pain with normally concentrates on my left side (from shoulder to finger tips and hip to toes), severe difficult sleeping (both going TO sleep and staying asleep...sometimes leaving me with 3 hours of sleep per night), hardly ever waking feeling rested at all (even on nights I get in enough hours of sleep), a metallic taste in my mouth from time to time, lower back pain (even from bending over for 3-4 seconds), tightness in my chest and stomach, sometimes severe neck pain, sore spots (outside of wrists, elbow, top of my shoulder and top of feet...mostly concentrated on the left side) and overall trouble thinking (or comprehending), remembering and reading (especially numbers). They felt this had to do with something more along the lines of Fibromyalgia than a drug reaction or epilepsy. The Rhuematologist I saw told me that seizures and light sensitivity (to the degree I have it) are NOT associated with Fibromyalgia at all and she basically felt it was all in my head. I can assure you, what I'm going through is real and I was devastated that she would question it like that, but...I've read enough to know that you will come across doctors who have no clue...she was one of them! I just wanted to see if anyone here had any advice as to whether or not my symptoms do fit Fibro or if there is another path I should try?! I just need a clue as to what direction to take from here!
Thank you for your help!, Ange
I have a question that I wanted to see if anyone here might be able to answer.
I had a grand mal seizure in March of this year and have since been diagnosed with epilepsy (no one certain type diagnosed yet but I feel it's closest to photosensitve). My neurologist felt after reviewing a list of complaints I had following the seizure that I may have Fibromyalgia. This was also agreed upon by my epilepsy specialist. I saw a rhuematologist who basically told me I needed a phsychiatrist (I know...big surprise) and have since decided I'm going to have to try to figure things out for myself before trying another doctor. I had been told that Fibromyalgia has been known to be linked to/cause seizures in a rare few! Also, there can be severe light sensitivity with Fibromyalgia. When I get in bright light I get a bad headache, my eyes feel like their swimming around, I'm very dizzy and after a bit I look and sound like I'm drunk (I either slurr my words and/or stutter and it feels like everything just slows down). My neurologist and epilepsy specialist felt this had nothing to do with the seizures OR my meds (I take 360mg of Dilantin per day right now). The extreme light sensitivity coupled with my list of ailments (which include the following: tingling of my scalp on the left side, tightening of my forehead, severe headaches (which sometimes include nausea and can last for days at a time), crampy/achy pain with normally concentrates on my left side (from shoulder to finger tips and hip to toes), severe difficult sleeping (both going TO sleep and staying asleep...sometimes leaving me with 3 hours of sleep per night), hardly ever waking feeling rested at all (even on nights I get in enough hours of sleep), a metallic taste in my mouth from time to time, lower back pain (even from bending over for 3-4 seconds), tightness in my chest and stomach, sometimes severe neck pain, sore spots (outside of wrists, elbow, top of my shoulder and top of feet...mostly concentrated on the left side) and overall trouble thinking (or comprehending), remembering and reading (especially numbers). They felt this had to do with something more along the lines of Fibromyalgia than a drug reaction or epilepsy. The Rhuematologist I saw told me that seizures and light sensitivity (to the degree I have it) are NOT associated with Fibromyalgia at all and she basically felt it was all in my head. I can assure you, what I'm going through is real and I was devastated that she would question it like that, but...I've read enough to know that you will come across doctors who have no clue...she was one of them! I just wanted to see if anyone here had any advice as to whether or not my symptoms do fit Fibro or if there is another path I should try?! I just need a clue as to what direction to take from here!
Thank you for your help!, Ange
Sponsor
jessbcuz10
11-19-2008, 08:03 PM
If I am not feeling my best the light bothers me. I sit at my desk at work sometimes with my sunglasses on.
seaturtle
11-19-2008, 08:32 PM
I can't sit under flourescent light or be exposed to glare or too much bright sunlight. These things, along with perfumes, will send me straight into a migraine.
I wonder if you might be experienceing migraines?
I've never had a problem with seizures.
Are they implying that it's "all in your head" by suggesting a shrink? Angry-making, if they are.
I think a lot of us over-react to any kind of stimulation: noise, light, motion. There are some sidewalks here which have bricks laid in diagonal patterns, and I can't look down at them without getting extremely dizzy.
I hope you find an answer for your discomfort.
Seaturtle
I wonder if you might be experienceing migraines?
I've never had a problem with seizures.
Are they implying that it's "all in your head" by suggesting a shrink? Angry-making, if they are.
I think a lot of us over-react to any kind of stimulation: noise, light, motion. There are some sidewalks here which have bricks laid in diagonal patterns, and I can't look down at them without getting extremely dizzy.
I hope you find an answer for your discomfort.
Seaturtle
Ange76
11-19-2008, 09:12 PM
Thank you for your reply! Has your dr. said that the light sensitivity is due to Fibromyalgia? Do you have to keep sunglasses on when you go outdoors?
Curious!, Ange
Curious!, Ange
Ange76
11-19-2008, 09:21 PM
Hi Seaturtle (love your screen name by the way...we are HUGE turltle lovers here! LOL). Thank you so much for your reply! All of what you mentioned affects me terribly...I have to keep hats and sunglasses on every time I go out and even that doesn't help totally, but...it keeps me from getting really bad. At least I can still communicate some. By the time I get to my appts. I am in what I call 'drunk mode'...and my husband usually puts me in a wheelchair...I walk slowly and stumble around if not!
I'm sure I'm having migraines along with this as I've started having nausea with my headaches lately! But...could migraines cause this and/or seizures? It seems that my epilepsy has more to do with my vision than anything else...that is what sets things off!
Yes, the rheumo was definately suggesting this was 'in my head'...she said that due to my level of stress she felt I needed to see a physchiatrist (long story but to make it short...I had to fight for 2 years to find answers to severe medical issues with my 2 daughters, my grandmother passed and my father in law wasn't expected to live the day before I had the seizure in March). It was horribly upsetting to hear because I have days (when I stay away from light and too much movement) when I'm completely fine! I'm not the kind of person to want to sit home and pretend something is wrong. I want nothing more than to leave my house again and be the Mom and wife I used to be! What I feel is very real...and everyone around me had attested to that. I won't be returning that rheumo but would love to know where to go next!
Your note about patterns in the ground....that totally bothers me and what's worse...when I go to an appt. I normally have to look down at the floor because of the movement and lights and their carpets are always the worst! LOL This can also send me into a worse state from what we've found!
Thanks for your response...hopefully soon I can get an idea of what direction to go in next...I would love to live again! I know too many on here understand that all too well!
Ange
I'm sure I'm having migraines along with this as I've started having nausea with my headaches lately! But...could migraines cause this and/or seizures? It seems that my epilepsy has more to do with my vision than anything else...that is what sets things off!
Yes, the rheumo was definately suggesting this was 'in my head'...she said that due to my level of stress she felt I needed to see a physchiatrist (long story but to make it short...I had to fight for 2 years to find answers to severe medical issues with my 2 daughters, my grandmother passed and my father in law wasn't expected to live the day before I had the seizure in March). It was horribly upsetting to hear because I have days (when I stay away from light and too much movement) when I'm completely fine! I'm not the kind of person to want to sit home and pretend something is wrong. I want nothing more than to leave my house again and be the Mom and wife I used to be! What I feel is very real...and everyone around me had attested to that. I won't be returning that rheumo but would love to know where to go next!
Your note about patterns in the ground....that totally bothers me and what's worse...when I go to an appt. I normally have to look down at the floor because of the movement and lights and their carpets are always the worst! LOL This can also send me into a worse state from what we've found!
Thanks for your response...hopefully soon I can get an idea of what direction to go in next...I would love to live again! I know too many on here understand that all too well!
Ange