HealthBoards

HealthBoards (http://www.healthboards.com/boards/)
-   Epilepsy (http://www.healthboards.com/boards/epilepsy/)
-   -   New to this board and have a seizure question (http://www.healthboards.com/boards/epilepsy/931733-new-board-have-seizure-question.html)

PennGuy 12-14-2012 11:27 AM

New to this board and have a seizure question
 
Hello everyone, this is my first post on this website. I have been having some issues for almost 1.5 years now. I have seen numerous Drs (my family Dr, a neurologist, a GI guy, and a heart specialist and now a sleep specialist). I am not holding my breath about the sleep specialist other then he was first Dr who really listen to my whole story and seemed interested in putting the puzzle into some order.

Anyway, to explain my situation it started in the summer if 2011 with no apparent trigger. I started to have serious digestive issues and constant chest pain. My family PC ran some tests and found that I had high Bilirubin but after a full liver and Gallbladder check just called it Gilberts syndrome (chronically elevated Bilirubin...of course it was never elevated before but that is another story). He also found some odd anitbodies on some blood tests and worked me up for Autoimmune which all check out fine. I had an EGD done in my stomach which found atrophic gastritis and a slow emptying stomach.

About a month after all this started I started having extreme brain fog and had extreme sensitivity to light. I really hated synthetic light and I had what was called the first migraine of my life. I was disoriented and could not concentrate and got a severe headache and could not tolerate any light. Now I will tell you, I have not had more than 5 headache in my life prior to this time. For two months I could not function with constant headaches and extreme light sensitivity especially to flashing lights. I also could not tolerate too much information in general. I am a scientist myself by trade and I used to doing ten things at once, but with this just watching too many cars on the highway buzz by would throw me into a fit. I was sleeping very poorly at this time with tingling pains all over, low BP, and simply for unknown reasons could not stay asleep for more than 45mins at a stretch. I was sent to a Neurologist who did an EEG, and some balance testing as well as an MRI and MRA and CT. All were fine, with the only noted item being two mucous retention cysts in my sinuses (Which were also giving me fits). Nothing with the Brain, no lesions, no abnormal waves, no tumors, no broken blood vessels. He told me to start taking Magnesium supplements (as I tested low in Mag once) and basically return in 6 months.

I also saw a heart doc due to my chronically low BP and exercise intolerance. There is a family history of dysautomia with my mom and sister have neuromediated syncope, a cousin with POTS and myself having passed out more than 10 times in my life.

To shorten the story, I am here today much better than last year. I am exercising everyday and doing much of what I did before this started. Most of issues have subsided to become only minor annoyances. However, the issue that I still have is this daily brain fog, sensitivity to light and disorientation. It is better, but if I drive where there is a lot of light coming through the trees for example and it is continuous for awhile it really gets to me. My head feels like pressure is building and I get disoriented (not really dizzy). I have not had any seizures to this point and I have always remember the episode very clearly.

I guess I am still a upset about what is going on. At this point I tell myself to just keep pushing and if I have a full blown seizure or something at least I would have an answer. Does anyone on here have any experience with this type of aura before a seizure and do they get them everyday? I know this is an epilepsy board but does anyone here have any experience with light sensitivity issues from Sinus problems? My family Dr says it is not possible, but I have heard others say differently.

Sorry for the really long first post. I hope everyone has a great holiday season and finds answers to whatever ails them.

DR

dogmom 12-19-2012 04:14 PM

Re: New to this board and have a seizure question
 
Whew! You have a lot going on, poor thing. It must be so frustrating.
I'm not a doctor, and it sounds like you've seen the proper ones based on your symptons. Remember, a normal EEG doesn't show whether or not you have Epilepsy. Keep a journal and jot down anytime you feel "funky." JOurnals help docs immensly.
Due to your family history w/the heart, it can't hurt to have it checked out...ie., an echo cardiogram or something.
Perhaps it's something as simple as exhaustion? Do you have a high-pressure job? I know before my tonic-clonic (grand mal) seizure, I was under trendous stress, trying to sell my house...etc. Felt "funny" dizzy and confused most days. But sometimes that just happens.
If it were me, I would see a cardologist first thing. This is just my opinion.
I wish you the best!

PennGuy 12-19-2012 06:30 PM

Re: New to this board and have a seizure question
 
Thanks dogmom, I truly appreciate your response. I was told the EEG was not fullproof but was a good indicator. It was 48hrs and at the time I was very sleep deprived so I am not sure if that makes a difference or not.

I have seen the heart Dr and they have ruled any major heart issues. My blood pressure has returned to a more normal number for the last few months and I have been able to walk 3 miles+ per day with my dogs. My sleep has dramatically improved and I am rarely fatigued. I do run my own business but I have done that for years and it is no more stressful then normal.

However, I still have this daily disoreintation issue / brain fog. I guess my next step is to return to the neurologist and see what he says. Would another EEG make the diagnosis for epilepsy more accurate?

The problem is certainly worse for me in the morning and does get a little better as the day progresses. I still have ti be careful around flashing lights, although, my neighbor has flashing Christmas lights and I can stare at them without issue. It appears to be mostly those bright fluorescent tube lights.....well again thanks for the response. I am trying to figure it all out. Just was not sure if it was possible/probable to get an epilepsy aura everyday for over a year without having any documented seizures.

Thanks again and hope you are doing well.

dogmom 12-19-2012 09:17 PM

Re: New to this board and have a seizure question
 
PennGuy, you are a quandry! I'm happy to hear everything is ok in ole' ticker, for sure! Photosensitivity could be an aura. I know I had a lot of problems with sunlight trickling through leaves prior to my diagnosis. Even now, being on 20 meds a day, it still bugs me...but I'm not sure if it's the Epi. or I'm just getting old and cranky! As in, "Could I just drive without all these distractions?" Nevermind flashing schoolbus flashing lights. grrrrr.
Some of it could be anxiety and you don't even realize it. Sometimes you could have interrupted sleep patterns and it throws your body out of whack. Like now. Why am I still awake? I need at least 10-12 hrs. a night. If I don't get it I poop out mid-afternoon for a coupla hours. My husband did a sleep study through Duke, and he learned a LOT about his sleep patterns and how to get a restful night of sleep.
I don't know if tthat will help in anyway..but maybe a sleep clinic could help?
Best wishes to you! Now go to bed! Think happy thoughts! :)

PennGuy 12-20-2012 07:19 AM

Re: New to this board and have a seizure question
 
Thanks again dogmom, I hope you got to bed soon after your post and got the 10-12 good hours :). I am scheduled for a sleep study in Jan, so maybe they will find something. I to have also thought of anxiety, but truthfully it does not make sense.....all who know me would tell you I am very laid back and calm. Although, I admit to myself that sometimes I internalize my frustration and worry and I have to admit that now I am worried about the lights when I do things. Although, it does not explain everything as I still get the brain fog at times even when I at home brushing my teeth for example....should not be any anxiety there. Also I am one that loves people and still enjoy going to social events.

Well, I am going to keep with the pushing attitude and if something happens it happens. So be it.

Thanks for the advice. I will see how the sleep study goes and hope they will gave some answer. On a side note I never gave a sleep dr much credit, but I had one office visit with the guy a few weeks ago and he was the first one who really listened (more than hour) and wanted to research some things about my puzzle. He was shocked that in all my appointments, I have never had things like my urine checked. He mentioned something about my adrenals since my family has some history of SIADH and of all my findings the high IgE antibodies and eosinophils in my nose and stomach lining intrigued him. I am not sure how all of that is related to light sensitivity and the adrenals but I guess I will ask him more at my next appt. One thing I have learned through this is the body does not work in specialized units like many drs, it is amazing how hormones and salt balance for example can effect the brain and everything else.

Wishing you good sleep and good health through Christmas and for the New Year.

WindeeGale 12-29-2012 05:47 PM

Re: New to this board and have a seizure question
 
[QUOTE=PennGuy;5104205]Hello everyone, this is my first post on this website. I have been having some issues for almost 1.5 years now. I have seen numerous Drs (my family Dr, a neurologist, a GI guy, and a heart specialist and now a sleep specialist). I am not holding my breath about the sleep specialist other then he was first Dr who really listen to my whole story and seemed interested in putting the puzzle into some order.

Anyway, to explain my situation it started in the summer if 2011 with no apparent trigger. I started to have serious digestive issues and constant chest pain. My family PC ran some tests and found that I had high Bilirubin but after a full liver and Gallbladder check just called it Gilberts syndrome (chronically elevated Bilirubin...of course it was never elevated before but that is another story). He also found some odd anitbodies on some blood tests and worked me up for Autoimmune which all check out fine. I had an EGD done in my stomach which found atrophic gastritis and a slow emptying stomach.

About a month after all this started I started having extreme brain fog and had extreme sensitivity to light. I really hated synthetic light and I had what was called the first migraine of my life. I was disoriented and could not concentrate and got a severe headache and could not tolerate any light. Now I will tell you, I have not had more than 5 headache in my life prior to this time. For two months I could not function with constant headaches and extreme light sensitivity especially to flashing lights. I also could not tolerate too much information in general. I am a scientist myself by trade and I used to doing ten things at once, but with this just watching too many cars on the highway buzz by would throw me into a fit. I was sleeping very poorly at this time with tingling pains all over, low BP, and simply for unknown reasons could not stay asleep for more than 45mins at a stretch. I was sent to a Neurologist who did an EEG, and some balance testing as well as an MRI and MRA and CT. All were fine, with the only noted item being two mucous retention cysts in my sinuses (Which were also giving me fits). Nothing with the Brain, no lesions, no abnormal waves, no tumors, no broken blood vessels. He told me to start taking Magnesium supplements (as I tested low in Mag once) and basically return in 6 months.

I also saw a heart doc due to my chronically low BP and exercise intolerance. There is a family history of dysautomia with my mom and sister have neuromediated syncope, a cousin with POTS and myself having passed out more than 10 times in my life.

To shorten the story, I am here today much better than last year. I am exercising everyday and doing much of what I did before this started. Most of issues have subsided to become only minor annoyances. However, the issue that I still have is this daily brain fog, sensitivity to light and disorientation. It is better, but if I drive where there is a lot of light coming through the trees for example and it is continuous for awhile it really gets to me. My head feels like pressure is building and I get disoriented (not really dizzy). I have not had any seizures to this point and I have always remember the episode very clearly.

I guess I am still a upset about what is going on. At this point I tell myself to just keep pushing and if I have a full blown seizure or something at least I would have an answer. Does anyone on here have any experience with this type of aura before a seizure and do they get them everyday? I know this is an epilepsy board but does anyone here have any experience with light sensitivity issues from Sinus problems? My family Dr says it is not possible, but I have heard others say differently.

Sorry for the really long first post. I hope everyone has a great holiday season and finds answers to whatever ails them.

DR[/QUOTE]
Hi, really could relate to your last three paragraphs. I was born with epilepsy, so I do not really know any other way of life. I have always been sensitive to light, when you talk about your 3rd last paragraph. I get this a lot, if I am in a car driving on a sunny day, this happens to me. Sun glasses will help some, pending on the person, and how bad your Epilepsy is. For example if I do not have sunglasses on or if I were in a room with someone shutting the lights on and off, this can trigger a seizure for me. I get the pressure in my head first, which is telling me to get out of the situation, so I will not have the seizure. Being Photo sensitive is very normal for any person with Epilepsy. Getting to know your triggers are important. I have never know any person with Epilepsy, and the doctor say it was from sinus problems. Just my opinion this maybe a trigger for you. Take Care, Sincerely, Elaine


All times are GMT -7. The time now is 05:57 AM.