Hi I'm new on here and need some advice that's why I joined this site , I've been having seizures over a year now , im 21 and I have them quite often , I have repeat ones and iv been for tests such as MRI, EEG awake and sleep , if got a 24 hour EEG coming up but with all the other test I've Had they have come back normal , and I'm worrying that the other test come back normal and nothing will get sorted I'm not even on medication and it horrible I'm not allowed out on my own as can have them anytime , and I can't even hold my baby niece and I get quite upset about all of it , after having them I get very tired and confused , I hope someone can give me so advice and help me out a lot , thanks
Need some advice please
- Thread starter Nat0511
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
- Messages
- 17,355
- Reaction score
- 756
- Points
- 263
Hi Nat0511, welcome to CWE!
What kinds of seizures are you having? Partial seizures can be a lot harder to catch on an EEG test. Don't give up hope though -- maybe this next one will catch them.
Do you keep a seizure diary? Do you have any idea what your seizure triggers are? If so, have your triggers handy for the EEG.
Aside from the EEG, identifying triggers can be useful if you're untreated -- that way you can at least try and avoid them or eliminate them from your environment. Other good general tips can be found here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
Best,
Nakamova
What kinds of seizures are you having? Partial seizures can be a lot harder to catch on an EEG test. Don't give up hope though -- maybe this next one will catch them.
Do you keep a seizure diary? Do you have any idea what your seizure triggers are? If so, have your triggers handy for the EEG.
Aside from the EEG, identifying triggers can be useful if you're untreated -- that way you can at least try and avoid them or eliminate them from your environment. Other good general tips can be found here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
Best,
Nakamova
Hi ,When having a seizure I loss consciousness and my whole body shakes and after the seizure it takes me up to 15 mins to get back to normal and I feel very tired after , and I do write them down and laterly flashing lights have been trigger it and I hope they find something soon and hope they can give me some medication for it , as I wanna be able to hold my niece , thank you for writing back to me
Welcome,
I hope your seizures get diagnosed soon and you get the meds. to help you.
I've had E. all my life, I'm 61 now, been to several Dr./Neur. each one ordering EEG & MRI they always came back normal UNTIL I went to a teaching hospital in 2005 Where it was finally found. All the years before that the Dr. could not give What was causing my seizures.
If the 1st. Dr. or meds. don't work for you, go for a second or even third opinion
I have learned so much on this forum that has helped me, more than Dr. on dealing with having E.-- I say this to encourage to look into all them forums and ask any and as many questions.
Keep us posted.
I hope your seizures get diagnosed soon and you get the meds. to help you.
I've had E. all my life, I'm 61 now, been to several Dr./Neur. each one ordering EEG & MRI they always came back normal UNTIL I went to a teaching hospital in 2005 Where it was finally found. All the years before that the Dr. could not give What was causing my seizures.
If the 1st. Dr. or meds. don't work for you, go for a second or even third opinion
I have learned so much on this forum that has helped me, more than Dr. on dealing with having E.-- I say this to encourage to look into all them forums and ask any and as many questions.
Keep us posted.
- Messages
- 17,355
- Reaction score
- 756
- Points
- 263
Yes keep us posted on how things go. If flashing lights are triggering, you might want to change/upgrade any fluorescents at home, and wear sunglasses in other places that have a lot of fluorescent lighting (like Walmart -- that seems to be a popular location for seizures).
edepew151
New
- Messages
- 58
- Reaction score
- 0
- Points
- 0
Hey Nat! You have definitely come to the right place! Everyone here is great and helpful! I'm 21 and started having seizures wen I was 12. I have never been able to drive or live on my own, so I know how you feel. For the longest time, all of my test were coming back normal. They would flash lights in my face, tell me not to sleep the night before, drink loads of caffine, everything, but nothing would happen. I even had one where they glued wires to my head for 3 DAYS and nothing happened, but 2 days after they took it off and I went home, I had a seizure!
There are few things I would recommend. First, go through your house and find things that could really hurt you if you fell on them and move/cover them. For example, my family got a special padding to go on the edges of the bottom of our brick fireplace and also kept a blanket over the bricks. Second, try to see if you can find something that consistantly comes before your seizures. I almost always start twitching about 30 seconds before I go, so I have just enough time to call for help. Third, go to Lauren's Hope (laurenshope.com) and get a medical I.D. bracelet or necklace. They have tons of choices and the prices are good. Since it takes about 15 minutes for you to come around, having one of these would be incredibly helpful for people if you had one in public.
There are few things I would recommend. First, go through your house and find things that could really hurt you if you fell on them and move/cover them. For example, my family got a special padding to go on the edges of the bottom of our brick fireplace and also kept a blanket over the bricks. Second, try to see if you can find something that consistantly comes before your seizures. I almost always start twitching about 30 seconds before I go, so I have just enough time to call for help. Third, go to Lauren's Hope (laurenshope.com) and get a medical I.D. bracelet or necklace. They have tons of choices and the prices are good. Since it takes about 15 minutes for you to come around, having one of these would be incredibly helpful for people if you had one in public.
Hey thank you for writing back to me and giving some advice nakamova and edepew , when I have been for my test straight after the test like when I was on my way home , I had a seizure in the car , the next test is a 24 hour one so I'm hopping they find something on that one , and yh , when I have a seizure I just fall , Im going to buy an I.D braclet as I need one , so I can go out , thank you . Nat
- Messages
- 70
- Reaction score
- 0
- Points
- 0
Hi Nat!
I'm glad you're here. Its a good place to get advice and to talk to people who can understand what you're going through. I wish you luck in getting everything sorted. I'm sorry that its all up in the air right now. Remember to take a deep breath and that you're not alone. Let us know how things go with the test.
-Mary
I'm glad you're here. Its a good place to get advice and to talk to people who can understand what you're going through. I wish you luck in getting everything sorted. I'm sorry that its all up in the air right now. Remember to take a deep breath and that you're not alone. Let us know how things go with the test.
-Mary
GodivaGurl1990
New
- Messages
- 4
- Reaction score
- 0
- Points
- 0
Hi Nat0511,
Welcome to Coping-W-Epilepsy!
Im sorry to hear your going through seizures and the doc not being able to find out why. It took a while before I was diagnosed too. For many years I experienced seizures too,but they were so mild they went unrecognized even after seeing numerous specialists,they were ponded off as migraines,a pinched nerve,clumsiness,adhd and/or as being normal. Though that all changed after experiencing a grand-mal in school and being rushed to the ER. After,reading your second post on what you experience durring a seizure and what triggers them lately.It sounds to me you possibly might have some form of Photosensitive Epilepsy with grand-mal/convulsive seizures. Which is common in Photosensitive Epilepsy. If you dont mind me asking you a few questions,and if too personal you dont have to answer.
1)Do you experience any auras or "warning signs" days before or right before your seizures?(Ex a grotesque smell or taste,a breeze on your skin,hear buzzing/ringing or voice,disortions in the ways things look,sudden feelings of fear,anger,joy or nausea..etc.)
2)Do you experience any sudden jerking like if an electric shock went through your body(ex sudden jump you may get at night when falling asleep but your awake,drop things/knock things over,fall/trip,throw something) or blackout for brief moments(spaceout/daydream)?
3)Are you bothered by flickering light(ex strobes,the sun flickering through a row of trees/on water or on snow),bright light(ex flourescent lighting or the sun shinning),certain patterns(ex stripes),sitting close to a tv/or projector screen in light or darkness and/or using computers with old crt screens?
I ask these questions because they connect with Photosensitive Epilepsy,which is one of the types of epilepsy I have myself. To help you I would suggest you make a diary of your seizures like Nakamova said. This will help you and your doc. In some seizure disorders they sometimes can occur at a certain time of day or certain months,durring certain types of environments/activities,certain foods..etc. Another thing I would suggest is to try to wear a pair of blue tinted glasses/if you dont have any blue tinted glasses try sunglasses this will reduce the flicker/flash.I was recommended this by my neurologist when I use to be severely effected by flashing light. It helped a lot for me.
Best of wishes!
Welcome to Coping-W-Epilepsy!
Im sorry to hear your going through seizures and the doc not being able to find out why. It took a while before I was diagnosed too. For many years I experienced seizures too,but they were so mild they went unrecognized even after seeing numerous specialists,they were ponded off as migraines,a pinched nerve,clumsiness,adhd and/or as being normal. Though that all changed after experiencing a grand-mal in school and being rushed to the ER. After,reading your second post on what you experience durring a seizure and what triggers them lately.It sounds to me you possibly might have some form of Photosensitive Epilepsy with grand-mal/convulsive seizures. Which is common in Photosensitive Epilepsy. If you dont mind me asking you a few questions,and if too personal you dont have to answer.
1)Do you experience any auras or "warning signs" days before or right before your seizures?(Ex a grotesque smell or taste,a breeze on your skin,hear buzzing/ringing or voice,disortions in the ways things look,sudden feelings of fear,anger,joy or nausea..etc.)
2)Do you experience any sudden jerking like if an electric shock went through your body(ex sudden jump you may get at night when falling asleep but your awake,drop things/knock things over,fall/trip,throw something) or blackout for brief moments(spaceout/daydream)?
3)Are you bothered by flickering light(ex strobes,the sun flickering through a row of trees/on water or on snow),bright light(ex flourescent lighting or the sun shinning),certain patterns(ex stripes),sitting close to a tv/or projector screen in light or darkness and/or using computers with old crt screens?
I ask these questions because they connect with Photosensitive Epilepsy,which is one of the types of epilepsy I have myself. To help you I would suggest you make a diary of your seizures like Nakamova said. This will help you and your doc. In some seizure disorders they sometimes can occur at a certain time of day or certain months,durring certain types of environments/activities,certain foods..etc. Another thing I would suggest is to try to wear a pair of blue tinted glasses/if you dont have any blue tinted glasses try sunglasses this will reduce the flicker/flash.I was recommended this by my neurologist when I use to be severely effected by flashing light. It helped a lot for me.
Best of wishes!
Hi thank you for getting in touch with me , and yh I don't mind , I don't gett warning signs , sometimes befor having 1 ill have bad headaches or I get light headed. When drifting asleep I suddenly jump the I'm awake . And with flashing light it started when I first having seizures as I was having a eye test and it had flashing light den later when at home had a seizure , den when my sister took picture with her Camra with the flash on and den wen I was watching tv and it was really flashing lights , and I don't have any tinted glasses , thank you for getting back to me and giving me advice and helping me .