News from the doctor, and a question (tinnitus)? (long post)

[Torak]

Hiya.

I haven't posted for ages, so I thought I'd give you an update on how things are going.

I went to King's College Hospital in London the other month, the first time I've been to a specialist unit.

The doctor put me down for an MRI scan, PET scan and a week in hospital on EEG on low or no medication to try to trigger seizures and isolate the focus.

He doesn't expect to see any brain damage and thinks it may be either genetic or due to premature birth.

But... we did speak about a head injury I had at school aged 7. A large plank of wood got blown off some scaffolding at school (a scaffold board with steel trim nailed to the edge) and the flat hit me on the head from a twenty foot drop.

It should have killed me, to be honest, but I went to hospital and had an x-ray, all was fine. No fractures, no concussion. Never thought anything about it.

I'm not sure, but it was around that time I started having simple partial seizures. It may have been earlier, I'm just not sure, but the first I remember was at school aged either 6 or 7, a simple partial seizure.

Anyway...

I stopped taking topamax, I suffered from such bad depression on topamax and it was making me so aggressive that they took me off it, even though it stopped the complex partial seizures.

only 200mg of tegretol a day now, simple partial seizures, a few CPS and about 1 tonic clonic per month.

I'm not sure about one thing though, and that is tinnitus.

Lots of people in my family have tinnitus, including me. I have it constantly, like the really high pitched whistle you get from TV sets in a really quiet room.

I'm thinking that maybe some of the simple partial seizures I have are only tinnitus.

Ringing in the left ear, a high pitched note (lower than the 'ordinary' tinnitus I have), all other sounds suddenly have the volume turned down (but only in that ear, the right is normal) and sudden distraction from what I am doing. Deja vu or jamais vu are rare and lead to complex partial seizures.

I'd like to know what you make of this, simple partial seizures or tinnitus?

As for complex partial seizures, this is what the doctor called them.

I think they are simple partial seizures.

Ringing in the left ear, deja vu, vision distorted, then suddenly I'm cut off from the world, people talk and I can understand each single word but the part in my head that puts them together and makes sentences is freaking out and can't put words together anymore. Glazed eyes, unable to talk or move, unaware of my surroundings apart from people talking (and the individual words) but usually a small section of memory of the event which is burned into my head and which I can remember for many years afterwards.

SPS or complex partial seizures? No idea.

Anyway, not too bad here, only 44 seizures so far this year, 4 tonic clonic, 10 CPS, and 30 SPS.

Reached a dead end with the psychotherapy (for Post Traumatic Stress Disorder) as I may have an Avoidant Personality Disorder, but some doctors think it is purely epilepsy related (flashbacks, nightmares and dissociative anxiety attacks? Doesn't sound like epilepsy to me).

Hope you're all having fun.

 

[RobinN]

Tegretol gave my daughter terrible vision problems. I think it also might have triggered her amnesia even though she had stopped taking it at the time she lost her memory. For our experience it has taken at least a month after a med for it to be totally out of her system.

I don't always try to figure out what type of seizure it is, but I do know it is related to it.

The EEG Institute is treating vets for PTSD. They do this for free. I was told that some patients come from quite a distance just for the treatment. You might consider neurofeedback. My daughter just had her 8th session today (two in one day) and she is doing much better..
(but of course I did not say that... at least not yet. As soon as I say this all hell breaks loose).

It has been show that magnesium helps tinnitus. There is a thread here at CWE that discussed this issue.

 

[Bernard]

Hi Torak, good to see you again. :hello:

I'd like to know what you make of this, simple partial seizures or tinnitus?

There are several discussions here mentioning tinnitus:

• http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-tinnitus-2333/
• http://www.coping-with-epilepsy.com/forums/f23/there-cure-epilepsy-882/index2.html#post8894 (read through the rest of the thread for a lot of good info)
• http://www.coping-with-epilepsy.com...ct-anticonvulsant-medications-2199/#post17832 (see the section on vitamin B12)

My father has tinnitus and he manages it by taking potassium and magnesium supplements and reducing salt in his diet. Spicy peppers also tend to aggravate the tinnitus in his case.

 

[Birdbomb]

My sp were very much like that

 

[kilowattfun]

I found putting a white noise machine in my bedroom at night not only helped cover the tinnitus but also activated some part of my brain that I believe I slept deeper.
Kilowattfun-Kendahl

 

[speber]

I can vouch for the Magnesium.....

....read the threads on this. If it sounds like your case I strongly suggest you consider this low cost option!

Worked very quickly for me AND it helps me and my wife reduce migraine symptoms. I take it twice daily.

Good Luck!
Speber
:rock:

 

[RobinN]

:tup:

 

[Shelley]

How much are you taking, Speber?
Right now I am having a bad problem in my left ear from an infection. Peroxide isn't helping the clogged feeling or partial deafness. And incessant, noisy pulsing ringing. (Arrggh!)

 

[John-Forrest]

Hello - Since I had another major seizure two weeks ago, fell off my bicycle, suffered a painful rib fracture, and once again wound up for hours in ER - I am taking a look at what is going on. The standard operating procedure of drugs, drugs and more drugs doesn't seem to be stopping this.

I suspect these seizures that happen two or three times a year have something to do with my right ear. I have a neurological hearing loss brought on by some severe illness when I was a few years old. I've always had a loud ringing in my right ear, particularly when I am under stress or didn't sleep right. (It's not so much the length of sleep that matters, it's more the 'quality' of the sleep.) Certain situations and occasions make this ringing more acute - I have had an acute tension in social situations. I seem to have these seizures during holidays for example. (This one two weeks ago was on Memorial Day.)

These seizures ALWAYS start with a VERY LOUD RINGING in my right ear that seems to DIG INTO MY BRAIN! They happen very abruptly and I have only a couple of seconds to hit the brakes on whatever I'm doing, sit down, etc.

Thus I hit "tinnitus seizures" as research here. I got this discussion. Looking at other web pages, there's the same speculation. Many people with extreme tinnitus sometimes have partial seizures and anti-epileptic drugs ALSO control tinnitus.

I think I'm onto something here. It could be all these years I've been having what is called "non-epileptic seizures" which is actually a kind of tinnitis triggered by stress.