Seizures, migraines, dizziness, ringing in ears
 

Hi! My husband has been having seizures for the past 20 plus years. They have never found out why he has them or has seen anything on the MRI's, CT's or any other testing they have done. Other than calicification on the brain. He is on Lamictal and Topomax for the seizures. He has been to so many neurologists and no one can help him and to be honest most of them don't even act that interested. The one he had been seeing for 2 1/2 years on his last visit announced that she didn't even know if he was having seizures, (after having him on anti seizure medicine for all these years.) I said well his seizures have been witnessed after surgery by other doctors, nurses and emt's have seen them along with people drawing blood at the lab. (I am not the only person that has seen them, many qualified people have too.

After that I took him to see an epiliptologist, we were very hopeful for this appt., because we felt if anyone, he could help us. For his first appt. the doctor came in late and was riflling though my husbands medical records as he was asking questions, and then didn't let us finish our answer, before going to another question, he spent a total of 10 minutes with us for a 1st time appt.

Needless to say, after 20 plus years, my husband is finally frustrated (which most people would have been much sooner). He has always been very cooperative about having whatever tests they want or seeing whatever doctor they want. He doesn't want to see anymore neurologists--he said he doesn't need too.
Does anyone out there know of a good neurologist in the Pittsburgh area, someone who is compassionate and knowledgeable?

The other neurologic conditions he has is severe migraines, with dizziness and ringing in his ears. It used to be he could lay down and when he woke the migraine was better, that is no longer the case, the migraines, ringing in the ears, and dizziness are much worse. Along with this he sometimes goes paralyzed on the right side. My husband is getting worse and I don't know what to do for him. He also has alot of other medical condition that are not neurologic related.

If anyone has any input at all I would really appreciate it, I hope I didn't ramble on too much.

Thank-you!

Hi Laura,
Welcome to the forum! I'm so sorry that your husband is having a hard time regarding his seizures. I've had epilepsy for 35 yrs. and just like your husband I saw many different neurologist and a lot of them just pushed the drugs on me which didn't help. I finally went to a University hospital that has an Epilepsy center there and the Drs. helped me the most.
If I may ask when your husband has a seizure do you know what kind of seizure he has? Absence (petit mal), where a person just stares, complex partial where he may stare, see colors in his eyes, smell odd odours, get a nervous feeling in his stomach (simple partial sz.) or maybe a tonic clonic sz. (grand mal).
Many times I've had migraines before and after seizures and I get dizzy once in awhile do to the seizure med I'm taking which can cause low blood pressure. My best advice to you is to call the Epilepsy Foundation in Pittsburg and they can help you out and give you info. Here's there phone number: 1-800-361-5885. Give them a call and give them all the info. and they will be able to tell you what might be going on. You mentioned that your husbands right side is paralyzed if I may ask does he possible have MS I have an aunt that has MS and gets migraines, and no longer can walk epilepsy can happen to some people that get MS. Here's wishing you and your husband the best of luck and May God Bless You Both!

Sue

Seizures, migraines
 

Sue,
Thank you for the advice and responding. He started out having grand mal seizures, but a couple of years ago he was having physical therapy on his neck and was fully alert and able to speak put went paralzyzed on his entire right side, they thought he had a stroke, the doctors told us it was a different type of seizure. He also, sometimes, smells something burning prior too, but not always. Sometimes he also stares off for a few seconds, so he has several types of seizures. He was also told that he experiences something called Todds syndrome. He also has diabetes, sleep apnea, delayed gastric emptying, hypothyroidism, sinus problems, and others. So often it is hard to tell what symptoms are with what problem.

Thanks so much for the response, I really appreciate it.

Laura

Hi Laura,
I'm so sorry to hear that your husband has all these medical problems I do know that sleep apnea, stroke, and sometimes diabetes can cause sz. for some people. You might want to check out this website to get a lot of info. on these matters. http://www.emedicine.com/neuro/index.shtml#seizures
When your husband starts to smell odd odours that is known as a simple partial sz. (aura sz.) If he is just staring like a person daydreaming for a few seconds that's an absence (petit mal) sz.
I found that using nutra sweet (aspartame) can cause more electrcial activity in the brain which can trigger sz. for me. I found this out when I started to drink diet soda and then I had many sz. I spoke to my neuro and he told me it was the nutra sweet causing the problem and to stay away from all of the sugars like that. This also may be the reason why your husband is having migraines.
I do know that every time I get sick with a cold or virus of some type I end up having more sz. because it messes up my body chemistry and if I take a cold or sinus med it slows up the seizure meds through my blood stream.
Have your husband cut back on the carbs and protein foods and start eating foods high in fat this is known as the ketogenic diet and has been around since 1927. The diet helps stop or reduce sz. and it works great for people who have grand mal sz. Here's wishing you and your husband the best of luck and May God Bless You Both!

Sue

seizures
 

Laura you described my husband to a T. Do you still check
posts? Would like to know how things are going and to compare notes with you.

Seizures, Migraines
 

Karen,
Sorry it took so long to get back to you. My husband was in the hospital for a few days--not related to seizures, things have been hectic.
I am sorry to say that nothing has really changed as far as his seizures, migraines, ringing in ears, etc. In fact, he had a seizure yesterday that left him temporarily paralyzed on the one side of his body while sleeping yesterday and then he had another this morning in his sleep. Lately he also jerks involunatarily while awake and asleep. I want him to go back to his neurologist, but he is pretty fed up with them.
How are things with your husband?

Laura

Laura,
My husband has been having seizures for30+years. He has only had a couple eposides where he would feel paralyzed on one side. The first time he was in a grocery store.He felt the seizure coming on and laid on the floor...but then couldnt' move his right side. 911 was called and he was takin to the hospital about 15-20 min's away...and by the time he got there he was feeling ok. They checked his heart and sent him home thinking it was
seizure related. A week later he had a heart attack and we
were back to the hospital. Now over a year later...a couple weeks ago he had a seizure that left him paralyzed for a few minutes.Makes me wonder if it's head or heart related? He complaines of headaches now and says he
hears a humming noise in his ears. Like your husband he doesn't call his docs unless he has to. He gets so frustrated with them. He was having the involunatary jerking and grand mal seizures when he was asleep. Doc's put him on Keppra with his Dialitan which took them away.Since the Keppra he hasn't had any grand Mals..but still has the ones where he falls and can't respond for about 40seconds.
Somedays he will have several a day..then will go days without having one. It is very frustrating for the spouses also worring about them and not being able to help. My husband sounds much like yours...when you have had this for so many years, they feel they know as much if not more than there docs. lol.

I can ramble on forever!

Karen

Karen,
Anytime you would like to talk I am here for you. My husband had a bad seizure yesterday while asleep and today while asleep-and become paralyzed on the right. (I took an FMLA day from work today--to stay home and keep an eye on him. I hate having to go to work when he is so sick. Lately he has nightmares that seem to bring on the seizures.
I don't know anything about Keppra--does it work strictly for seizures or does it help with migraines, etc.?
Please take care, maybe we can help each other by comparing notes or just having someone to talk to.

Laura

seizures
 

[QUOTE=aunt_laura;485556]Karen,
Anytime you would like to talk I am here for you. My husband had a bad seizure yesterday while asleep and today while asleep-and become paralyzed on the right. (I took an FMLA day from work today--to stay home and keep an eye on him. I hate having to go to work when he is so sick. Lately he has nightmares that seem to bring on the seizures.
I don't know anything about Keppra--does it work strictly for seizures or does it help with migraines, etc.?
Please take care, maybe we can help each other by comparing notes or just having someone to talk to.

Laura,
Hope hubby is feeling better today and you can enjoy your day off. I know what you mean about having to go
to work when they are having a rough day. But I have to work for the Insurance.
My husband had seizures while sleeping for years. He would have the grand mall seizures.I hated those sleeping seizures.We would dread seeing the night time come. Those were the darkest hours. Since starting on the Keppra with his Dialantin he doesn't have the grand malls at night.
He still has small ones when first going to sleep sometimes. Yes Keppra is an anti-seizure drug. Since starting the Keppra he isn't having the involuntary jerks he was having in his arms/hands either. He is also on Zannax ...which is an anxiety drug. He takes this at night
before going to bed. It calms him down and helps him rest
better. If he gets jittery durning the day and feels like he
might have a seizure he takes one also. My husband has not worked for alittle over a year now. I think the less stress they have in their lives helps alot. Does your husband still work?

As for the headaches..this is all new for us. The heaches have just started in the last month or so. His head hurts
on the very top of his head. He says feels like he has a cap on...a painful cap!. He has complained of a headache this morning with a bit of sick stomach. I'm crossing my fingers that this isn't a start of a bad day for him. He has
not told the doctors about the headaches..so is only taking
over-the -counter drugs for them.

Hope you have a good day!
It's nice having someone to talk with that you know understands. So glad I found this site.
Karen

Karen,
Sorry again, I have not responded for awhile, I am not always on my computer. I'm glad the Keppra is working for your husband. My husband is on Topamax and Lamictal, but I think he needs some changes. One of them is also used for headaches, but he still gets severe headaches almost everyday. My husband has tried all of the prescription medications for his headaches, (imitrex, zomig, maxalt), but they none work for him. My husband has been on disability since 2001. Along with the seizures he also has sleep apnea, glaucoma, diabetes, delayed gastric emptying, copd, headaches, hypothyroidism and probably something I'm forgetting. The amazing thing is he never complains, he doesn't like to worry me. It is really nice to have someone to talk to, and I am glad you replied to the posting I left awhile back ago. Take care and I hope your husband has a good day:)
Laura

Karen,
Hi! Just wanted to check and see how everything is going for you and your husband. I hope you are both doing well. I am home from work today, my husband had a bad seizure last night and his delayed gastric emptying is really bad also today. I just didn't want you to think I forgot about you. I emailed you before but I don't know if you got it, since I am not quite sure how to post replies on this site. Take care Laura

things are going well here. Somedays hubby has several seizures somedays and somedays he can go all day without having one. With Epilepsy you really do have to live one day at a time. Hope things are well with you.

Karen

Laura,
Sounds like your hubby has a lot
going on with his health. It's a lot to deal with and I
understand how hard it is just to make time to sit down at the computer for a few minutes. Hope things are going well...just remember we just have to take one day at a time

Karen

Ladies
 

Let me introduce myself. My name is Tyler and I am 27 years old. On Dec 30, my wife went into a grand Mall Seizure for the first time in her life. It was the scariest moment in my life. Since that time, she has had 2 other seizures both at night. The neurologists have been able find abnormal activity in her left side of the brain (Down toward the bottom of the brain). They put her on Kepra. She had reactions to the pill and they pulled her off of it. The reason why I am intrigued with your post is because she starting getting ringing in her left ear back in Aug of last year. We went to see a ENT and all he said was, "You have the ears of a 80 year old women (I know, a lot of help!). She has continued to have occasional ringing in her left ear which will make her right leg go numb. Just recently she has had the ringing in both ears making both of her legs to go out and making her pass out (or go into a minor seizure). I am looking to see if the doctors have been able to correlate your husbands seizures with his ringing in his ears?
I had a second opinion done on her ears and the new ENT has never heard of anyone having an issue as her case, but her hearing if normal except for high pitch frequency, wherein she has lost 40% hearing in that area. She is health as a horse before this all started and I am lost on where to turn to next.
I am trying to get her into a specialist at Barrows neurological institution in Phoenix but feel I am going to run into another dead end there. Can you share any enlightenment on your husbands ringing with me. I am trying to figure out if there is any correlation.

Thanks,
Tyler

Tyler,

I'm not one of the two ladies, but I also have ringing of the ear. Mine is due to brain surgery. I also had problems with sleep apnea which caused the ringing to get worse at the beginning. If your wife is having problems where her leg is now going numb, have her see a sleep specialist of the ENT won't do anything. The ringing isn't always caused by ear problems.

Becky

Thank you all for sharing your stories. I hope today finds you and your spouses seizure free and tranquil.

I too have seizures, mainly at night (grand mal). I've also had an odd type of sound in my ears, I believe since the seizures started. I hadn't really connected the noise with the seizures - until now. The sound isn't really "ringing;" I'd describe it more like a clicking or small snap, almost as though hearing turns off and on momentarily. In fact, it's more as though I'm feeling it rather than hearing it. I very much dislike the days when I have this sensation.

Thank you
 

Thank you for this post. Hope that your husband is doing better now. Please don't give up. Keppra is an anticonvulsant and an anti-migrainal drug. I take it with Topamax which is another of the same type. I have had migraines all my life and seizures for 2 years. Something my old neurolgist had me do was to keep a migraine journal, I have adapted that idea to keep track of the seizures too. Well my husband does most of that. When ever I see my neuro Dr I give him the latest version. This seems to help him understand what's happening to me even though I forget a lot of things due to the seizures. This might be useful for your husband as well, you document what you see on the outside, and he documents what he experiences.

Hi sorry to hear about everyones problems. I myself had a seizure about a month ago, i had severe brain damage when i was 7 i am now 31 it was a shock to have a seizure after such a long time. It was my first seizure and i haven't had one since, but reading this forum i've seen a few symptoms i'm having that i didn't know could be linked e.g. feeling tired, starring in one direction for a short amount of time, limbs going cold, shooting pains in various places. Today my ears started burning and they still are and they're really aching, has anyone esle had burning ears or maybe its not related to seizures. it's a bit of a worry when i feel like so will be nice to hear from other people. take care everyone

[QUOTE=KAREN1202;478483]Laura you described my husband to a T. Do you still check
posts? Would like to know how thingllp

Hello,
I have been having problems for the last 4 months myself. For some reason (no one knows why) the right side of my body goes completely paralyzed. Starting with my finger tips to my legs to my toes. This takes about 45 seconds so usually have time to sit down some times I don't. My face sags a bit and my speach is slured. At first they thought they were TIA's but now the doctors believe they are seizures. This event will last about 10 mins then the feeling comes back and its like it never happened. This can happen 2 or 3 times a day. I hope they figure it out soon.
Vinman

Welcome to NeuroTalk:

Have your doctors tested you for homocysteine levels? If this is elevated in people, it irritates blood vessels and can cause serious blood flow problems.

High homocysteine points to low B12, folate and B6 status.
In about 10% of people B12 and folate cannot be activated in the body to work properly. This is genetic and can be tested for using a special DNA test. If you have this error, called MTHFR polymorphism, then you need to take special forms of B12 and folate. They are called methylcobalamin and methylfolate. The methylation aspect is what is not working.

The 3 vitamins I listed are used to convert homocysteine to SAM in the body. SAM moves methyl groups all around, to take care of many biochemical reactions. When this system fails, homocysteine builds up and damages the linings of blood vessels, and reduces blood flow.

So make sure this biochemical potential is tested for.

Ringing, Seizures, Neuro Migraines.....ALL NEW 31 YRS OLD
 

I am a 31 yr old Female. I have just started having seizures and neurological migraines(the ones that mimic a stroke) about a 1.5 months ago. 2.5 months ago I had surgery to remove a stage 1 ovarian tumor. 1 month ago I had some cervical lymph nodes removed, now in the CT scans they found that my right jugular vein is bulging into my inner ear which is causing severe ringing in the ear and at times really odd migraines that sounds like a million chimes swooshing in my ears. The worst migraines are the ones that leave me completely paralyzed. I have notice the seizures mainly favor the left side but in have had a couple times where my whole body just froze up. The Neuro I went to had the balls to say I don't know and I think you are faking it even after the ER seen me have a few grand mal and I heard the doc at the ER call them Clonic Tonic. What the Hell. I am now waiting for my new appointment with my new Neuro and next month get to go to the University of Utah to the Epilepsy institute in hopes to find some answers. So frustrating and scary. I was so angry at the doc that said I should just go see a therapist! Are you kidding me! I did not just waist all my wedding money on ER visits to get attention

Nice to meet you!!
 

Hi summerworkman81,

Welcome to the forum! Darlene gave you some excellent info. I've had epilepsy for 40 yrs. and before my sz. started I had wicked migraine headaches then after they started the sz. started up. It's up to you but I would turn the neuro you saw into the medical conduct board in your area. I've had to do that with a neuro I've seen in the past that messed me up really good giving me sz. med then refusing to do blood tests on me to find that I almost bleed to death from the med.
Keep track of the weather sometimes a low pressure in the weather can cause sz. or migraine headaches even if the bad weather isnt' supposed to hit for a couple of days. I also found out that some people can be cell phone sensitive which means if you or others around you are using a cell phone it can trigger a sz. and that's because of the frequency the cell phone uses. I found out that it causes me to have sz. and when I go to the stores I have to be very careful that I'm not around people using their phone.
Feel free to ask any questions any time. I will tell you hormones changing can trigger sz. for some people. I started cold water therapy and that has helped reduce my sz. a lot. If I feel a sz. coming on or a migraine headache I put a cold washcloth on my face and neck 3 times a day or more and this stops the sz. and headache because it's calming the neurons down in the brain. Wishing you only the best and May God Bless You!

Sue