Saw A Different Neurologist Today, Questions

[davidmc]

I've had problems with Neurologists at Salford Royal not listening, putting down wrong information, cancelling a test they promised would definately go ahead (5 day EEG Video Telemetry test which was originally meant to be a 7 day one but turned out they don't do 7 days ones!), and lying when I complained.

Well today I saw a different neurologist, although at the same hospital. I told him about the partial seizures as I had the seizure diary with me that I'd filled in March (before I was on Topamax). Although most days there were 10 or 20 (rough figure, not exact each day), one day there was 63.
He said that with that amount of seizures, usually something would show up on EEG if I had a seizure at the time of the EEG as there would be brain damage to cause that amount. Is that true? There was an operation aged 10 to remove a heteropia I was born with on my scalp where there was brain tissue when they removed the lump. Just putting that out there in case it's of any relevence.

He said he will arrange a 24 hour EEG test but will only need to pick up one seizure to see if there is any change in brain activity, He said if there isn't, it would be unlikely to be epilepsy. Not qute sure how it happened but then he changed it to a 48 hour one, and finally a 72 hour one. So it's not as long as I'd been promised but it amost is.

Some days I still get 1 or two seizures and auras despite the Topamax, although even without it there have been times when I've one for up to about a week with no seizures. But he said there's no need to taper off the Topamax before the test. Wouldn't it be better to come off it so as to be more likely to catch a seizure considering the lack of them at the moment? Not sure.

There is a trigger for me, diet drinks and products (artificial sweeteners), so I could eat/drink them before the test (although don't like the idea of it but if it gets a diagnosis...), not sure if it would work if I'm still on Topamax as I've been avoiding them. Should I try the products with the artificial sweeteners in sometime well before the test to see if they could still trigger my seizures while I'm on the Topamax?

Thanks.

 

[Chel]

Hi David

One of our other members went online (youtube, I think) and watched strobe lights while she was undergoing her EEG; she had a seizure. Until she did that, the docs had questioned whether or not she had E. It's a risk to expose yourself to your known triggers, so it's up to you whether or not you do it, but nobody is going to stop you.

On another note, I've just seen on the telly that the riots are near you; hope you are safe, mate.

 

[msuder0583]

It seems to me that you should do whatever triggers seizures. Because typically when I get an EEG done, I'm not supposed to sleep very long, which of course is a seizure trigger. During the EEG I breathe heavy (seizure trigger), and I have the strobe light flicker in front of my face (trigger), so I would say go for it.

 

[davidmc]

Hi David

One of our other members went online (youtube, I think) and watched strobe lights while she was undergoing her EEG; she had a seizure. Until she did that, the docs had questioned whether or not she had E. It's a risk to expose yourself to your known triggers, so it's up to you whether or not you do it, but nobody is going to stop you.

On another note, I've just seen on the telly that the riots are near you; hope you are safe, mate.

Thanks. I do get the feeling that some specialists don't believe me and one neurologist gave me a diagnosi of Non Epiletic Attack Disdorder simply because I have learning difficulties (writing isn't one of them although I have ben foregetting how to spell words I've know for years), most things take me longer to learn than the average person. Do get there in the end though just a lot longer. lol At the second EEG test, the neurologist suggested drinking Diet Coke, which did trigger seizures on a day I wasn't getting them (I have had days where I haven't had them), but I didn't get any during the EEG test as mine are usually when I am moving (think they are simple partial motor seizures) but had to lay completely still for that test.

Yeah the riots were near me, the Bargain Booze they smashed is next to my flats. But I cycled to my sisters (don't know anyone that drives and public transport wasn't an option even if it had have been running as I would have had to wait at the bus stop with the rioters about), went past police vans and a few rioters on my way and I'd took the safer route!!! They are idiots.

It seems to me that you should do whatever triggers seizures. Because typically when I get an EEG done, I'm not supposed to sleep very long, which of course is a seizure trigger. During the EEG I breathe heavy (seizure trigger), and I have the strobe light flicker in front of my face (trigger), so I would say go for it.

Before I was on the Topamax, I was waking up frequently and taking hours to get to sleep, and was having more seizures than ever before even without drinking or eating anything with artificial sweeteners in (and I was careful about that too, checked everything). I suppose I could stay awake the night before just in case that would help. Although I'm not confident the test will go ahead as I've been promised tests before and haven't had them.

 

[mel239]

During my veeg,I arrived sleep deprived,moved the bed/chair next to window since sun affects me,wore flannel pjs so I would sweat since heat makes me funny,set you tube up with their multitude of strobe and pattern videos,only consumed numerous cups of coffee with caffiene and equal--stayed up for over 40 hours and went without solid food for day and half.Staff doc did not take me off meds for 2 days but as soon as they did-Bam! Numerous multiple abnormalities over left temporal lobe every 1 to 4 minutes regardless of awake or when I did zonk out and 5 seizures on first report.Believe me,this was my second veeg and I had a confirmed dx but they were trying to categorize my recent constant hallucinations.I say STRESS your body to the breaking point and insist on no meds!I feel where you are coming from,those first 2 mornings I was exhausted and mentally ready to break when that staff doc talked to me like they saw nothing and I was wasting their time---

 

[davidmc]

During my veeg,I arrived sleep deprived,moved the bed/chair next to window since sun affects me,wore flannel pjs so I would sweat since heat makes me funny,set you tube up with their multitude of strobe and pattern videos,only consumed numerous cups of coffee with caffiene and equal--stayed up for over 40 hours and went without solid food for day and half.Staff doc did not take me off meds for 2 days but as soon as they did-Bam! Numerous multiple abnormalities over left temporal lobe every 1 to 4 minutes regardless of awake or when I did zonk out and 5 seizures on first report.Believe me,this was my second veeg and I had a confirmed dx but they were trying to categorize my recent constant hallucinations.I say STRESS your body to the breaking point and insist on no meds!I feel where you are coming from,those first 2 mornings I was exhausted and mentally ready to break when that staff doc talked to me like they saw nothing and I was wasting their time---

Thanks.
Did they taper you off the mes or do it at once?
Until I was on any medication I was having more problems sleeping, don't know how they helped. But a lump I was born with, the area was usually raised and always tender even though I'd had the lump removed 18 years ago or so - if anything touched it, a feather, duvet cover (don't use the duvet as it's too hot), it would cause more pain. The same time my seizures increased, so don't know if it's connected or not. After the Topamax, it stopped being raised and I could get my hair cut with being in agony. lol The lump was on my scalp and one of the things they thought it could be was Central Nervous System Heterotopia.

Caffeine doesn't affect me at all but artificial sweeteners do, not sure if they'd let me bring them in though, hopefully they will. If not, suppose it would be easy enough to smuggle a pack in as they are only small.:roflmao: I will eat some cakes with them in on the day and day before of the test (they work best for me, better than the drinks) so should hopefully get someting on at least one day.

I'm not photo-sensitive but not sure if they'd allow the use of a laptop. Would be good if they did because I have a mobile internet so can use it anywhere to watch videos etc. They may block the internet signal though, they block phone signals in the hospital so you can't send a text or call.

I'm not good with heat but it doesn't cause my seizures just I feel really hot in cold weather a lot of the time so it's worse in hot weather. Couldn't even look in the Tropical bit of Chester Zoo as it was too hot and I was feeling "funny" so had to come out, felt like I was going to pass out.

 

[mel239]

Cleveland Clinic encouraged you to do whatever you felt was needed.Nurse even told me alcohol was a big trigger and some people did that.I don drink,but I would have.I take 1800mg trileptal and 300mg zonergran.On third day trileptal cut in half and on fourth day zonergran taken and on fifth day nothing and back on meds nightime on sixth day since I went home next morning.They only had diet soda and coffee for consumption and those have plenty aspartame! and caffiene.If you wanted regular sugary soda you had to bring it from home.Im not photosensitive either but I still get funny sensory feelings from sunlight and I think it helped as did exertion.They had this mini exercise pedals and I put on a headset and rode away!

 

[davidmc]

Cleveland Clinic encouraged you to do whatever you felt was needed.Nurse even told me alcohol was a big trigger and some people did that.I don drink,but I would have.I take 1800mg trileptal and 300mg zonergran.On third day trileptal cut in half and on fourth day zonergran taken and on fifth day nothing and back on meds nightime on sixth day since I went home next morning.They only had diet soda and coffee for consumption and those have plenty aspartame! and caffiene.If you wanted regular sugary soda you had to bring it from home.Im not photosensitive either but I still get funny sensory feelings from sunlight and I think it helped as did exertion.They had this mini exercise pedals and I put on a headset and rode away!

Thanks.
I rarely drink, last time I did was New Year. But alchohol is not a trigger for me anyway, and if I did they'd no doubt blame drinking as the cause. Don't have that many triggers, some artificial sweeteners are the main ones (though I do still get them without consuming them).

Ah if they have some sort of exercise thing, that would be good as I think my seizures are simple partial motor seizures, they usually happen while I'm doing something especially exertion (heart problems have been ruled out). Hopefully they will have something.

 

[jyearta]

Today was my 7 nerurg.

This was a diff. experience for me. Please indulge me.
I fell I have found the right one. OK, OK - I know it was just my 1st. visit with him.

The whole staff was very kind and helpful.
My Dr. LISTEN yes LISTEN to me!!!

He ask the usual questions, then he notice I was very nervous, and He asked why. I told HIM, that so far, the neur. that I have seen. just said here you take this. It is a new medic.

I would do as told, but when I called to explain side effects or I had questions, I could not get an answer NOT even a call back. SOOO how, yes I know I need a Dr. but the truth is that I'm SCARED of them.

He gave me answers to my questions before I got to ask.

After my exam. and his listening - all I needed was tweak of my medic.

At this office they have a web site, they gave me a code. that I can write them a concern, or question. They told me they would reply back.

Also that there a 3 dr. there and that one is on call 24/7.

This Dr. told me he was sending a copy of my visit to my family Dr. They they need to be on the same page with my health care. I HAVE NEVER HEARD A DOCTOR SAID THESE WORDS BEFORE.

This Dr. LISEN to me about how the B-12 shot would spike on me, and send me into a rage. HE said he could see that, that I was sensitive to medic. from what I was telling him. He told me to take shots ONCE a week (1/4cc) and take 2 droppers of B-complex. This is to keep medic.even (no valleys and then no spikes)

Will he cure me. NO,
Will I have no more side effects: NO

Well I know I have gone on and on.

Thank you

 

[Nakamova]

That's great news! Sounds like he's a terrific doc, with a very responsive office. And being able to access your doc via e-mail is huge!

 

[jyearta]

I am just so excited....

I have gotten an Email; from this this afternoon;

Given me my password, username:, etc. for their patient portal

I will be able to ask question of DR, , Nurses, Staff
request prescription , refill
set up appt.
examine your statments

This Dr. encourages that you take an active role in managing your health care.

I thought that was what I was doing when I would tell my X-neur. side effects, etc.

I don't think he like that.
and could have been the way I said things. sometimes what is in my head to say does not come out that way.
I just keep from smiling......

 

[Nakamova]

Stop! You're making me jealous.

 

[Meetz1064]

That is sooooooo COOL!! I'm soo happy for you! Congratulations!

 

[davidmc]

My neurologists aren't allowed to contact patients by email.
I never get a phone number or any way to contact them either, the only way to contact them is at the next appointment (which for me is 3 months away).

 

[jyearta]

This a program from his office, not your reguar EMail.

His office gave me the instructions of how to use.
Once on the site, I can ask dr. , check lab / diag., request refills.
this is not to take place of my appt. He said it was to give patient peace of mind. To know that you have a way of asking questions or contact them this way or by phone.

With my memory - I have a copy of my question I send to his, and then I get a copy of his reply.

This is all new to me.

I think that it is great, but it remains to see if it is ALL THAT.
It has help me, in the fact I don't have to go through the phone message left, only with NO reply.

I have not heard of this before.

I tired of not being able to reach ANYONE
If this helps my stress, I WILL TAKE IT.

I wanted to share, hoping that (if this is a good think) that other Dr. will see how helpful it is, some questions don't need a trip in.

 

[davidmc]

Question About EEG/ CNS Lesion

When I was born I had a lump on my scalp. It was sore. Aged 6, it still hadn't gone, so mt my took me to the doctors who said it would go by the age of 8. It didn't. It was still there age 10. Anyway, an MRI scan showed it wasn't just a normal birthmark, and it was removed aged 10. My notes say:

sections show that the white area noted macroscopicallay cosists of two islands of neurological tissue. In one there are clearly differentiated ependymal channels. There are surrounding dilated vessels and a chronic inflammatory infiltrate. The overlying epidermis shows a loss of norml dermal appendages. Exision appears complete. The appearence of the neurological tissue is identical to that seen in Nasal "gliomas". This would suggest that this lesion is a very uncommon CNS Heterotopia or part of a residual Encephalocele.

Until I started on the Topamax, the area the lesion was in was always raised and sore. Somehow, after I started the Topamax, the area went back to normal. But the past few days, it is happening again, it is sore and tender and raised. I'm wondering if the exision was complete after all as it currently looks like the lump used to look except slightly smaller.
Can I ask the technician to put one of the pads on the area the lesion was removed from considering before the Topamax, it being raised coincided with the increase in the partial seizures? (The neurologists always dismiss the possibility of this causing them without even looking at my medical notes).


Also what type of specialist would I see about the lesion?