Newbie....

[mr&mrsp]

Hi all

Ive just joined so that me and t'other half (who has/had epilepsy) can meet others who are having the same issues as we are atm.

Well. T'other half was diagnosed with epilepsy as a teen, and had several seizures between the ages of 15-27. But when we got together around two years ago, i noticed he was having minor attacks.

hes still got the shaking, and the blinding headache that accompany his full tonic seizures, but these small attacks are different. During them he is still able to hear me, and to respond in some form (usually grunting) and he is able to help manouver himself around if he's in an awkward place.

In January, we were referred to see a specialist in Hope hospital, Salford, who suggested NEAD. He then also suggested that t'other half should reduce his tegratol, and come off it alltogether. Simple enough!

t'other half stopped his teg on the 5th march, and by 4am on the 6th i was phoning an ambulance as he'd had his first tonic seizure in years. This was the followed by a further two the same day. nothing doing, they sent us home again.

BUT...yesterday (19th march) I was again woken at around 4:30am with t'other half in the middle of a tonic seizure. Again ambulance &hospital...nothing they could do, we were home for 3pm!

BUT...by 7pm t'other half was again having a seizure. see above to guess what we did!

So....specialist has said that under no circ's is t'other half to restart his teg, and that we've just got to wait and see if it is then the NEAD.

This is us & what is currently going on atm, if anyone has had similar, or just wants to offer experiences, please do. We feel a bit out on a limb as its not quite one thing, and not quite the other!

Thanks. Mrs P & T'other half xx

 

[chmmr]

I'm so sorry this is happening to you guys. That is a lot of TC's to have in a very short period. Did the neurologist say why they don't want him to restart the tegretol? I think i would personally be looking for a new neurologist as it seems pretty obvious that coming off the tegretol caused a worsening in his condition
Has he had an EEG recently? Or any other tests?

Welcome to CWE!!

 

[mr&mrsp]

Hi,
well the specialist wants to check if the epilepsy has 'gone' (this we dont get at all!) and to see if the smaller seizures he's having are non-epileptic attack disorder.

and aparrently, the only way to check for this is to stop the teg, and see what happens...

The last time he had a full tonic clonic seizure before the 5th of march was about 5 years ago!

Mrs P & T'other half xx

 

[chmmr]

So how long does he want you to continue on like this? I sort of understood his thinking before stopping the tegretol, however it seems pretty obvious that as soon as he stopped it (unless i am misreading) that that is when the TC's started up again. He's had 5 TC's since march 5 right? 3 the day after he stopped the med and then another 2 yesterday? How long do his TC's last?
I would certainly be insisting that they give you ativan or something else to stop a prolonged seizure at home if they are going to make you sit and wait, and be sure to keep a journal of seizures and what happened that day (ie was he sick, tired, stressed, etc etc to see if you can find a pattern to the current seizures). Did the other ones he was experiencing disappear? Or are those still there too?

 

[Fedup]

mr&mrsp

I am sorry you are having a hard time of it lately, why would they say they are non epileptic attacks after all these years and considering he was on Tegratol for so long and obviously he had seen a neurologist prior to all this.

 

[mr&mrsp]

They said that the smaller absences are possibly non-epileptic, as he's still able to hear and respond, unlike his tonics.

yes, Chmmr, youre right, hes had 5 tonics in two weeks, which is really unusual, as he's only had around 11 tonics in his 16 yrs of diagnosis!

We have an appointment to see the specialist in may, but we're trying to get this brought forwards as something isnt right. I'm getting the feeling that the speacialist is using t'other half as a guinea pig for something new :S

The only reason for not restarting some sort of drug is that we're waiting for the drug to completely be out of his system, and to see if this makes any difference to his seizures. as an aparrent side affect of coming of tegratol is that there may be seizures.

His tonic's usually last around 1-5min of the shaking, and then around 30 mins + for the after effects and coming round to talking normally again.

Thanks so much xxx

 

[Fedup]

mr&mrsp

I think you are right to try and get the appointment moved up, you are right it does seem like he is being used as a guinea pig. It usually takes about a month for the medication to leave the body. It just seems like he should be back on his medication.

 

[Cint]

They said that the smaller absences are possibly non-epileptic, as he's still able to hear and respond, unlike his tonics.

Hi mrsp,
Sorry you are going thru such a bad time and the dr. is giving you the run around. It is possible for one to have TC seizures as well as SPs and CPs. During a SP, one is able to hear and sometimes respond.

We have an appointment to see the specialist in may, but we're trying to get this brought forwards as something isnt right. I'm getting the feeling that the speacialist is using t'other half as a guinea pig for something new :S

I get that feeling, too, as I was used many times as a guinea pig during my years with E and trying meds. Don't let them use you. Change doctors if you need to.

The only reason for not restarting some sort of drug is that we're waiting for the drug to completely be out of his system, and to see if this makes any difference to his seizures. as an aparrent side affect of coming of tegratol is that there may be seizures.

Coming off any AEDs can cause one to go into seizures, especially if done too quickly. Years ago, my dr. took me off Tegretol too quickly and I went status and ended up in the ER. I was changing meds because my seizures had started increasing and at that time they were only CP seizures. They kept me in the hospital overnight and 1 day to stabilize the meds. Then I was able to go home and continue coming off Tegretol while titrating on to the new drug.
Like FedUp, I think he needs to be on meds.

 

[SlimBlue]

Welcome to CWE the pair of you

I also fully agree that this sounds dodgy. It's not unheard of at all to be used as lab rats in whatever current paper your neuro is working on. When I was first diagnosed they were all over me coz it was assumed mine was caused by viral encephalitis- but I had no physical damage (scarring etc) to back that up.

They tried 4 different meds on me in 18 months, before I said enough was enough- the side effects were hideous. Stand up for your rights..

 

[mr&mrsp]

Thank you all for your help and suggestions etc. It's made us realise we're not alone completely!!

Hi mrsp,
Sorry you are going thru such a bad time and the dr. is giving you the run around. It is possible for one to have TC seizures as well as SPs and CPs. During a SP, one is able to hear and sometimes respond.

That's something we didnt know, and the first suggestion that the specialist made was NEAD rather than giving other ideas.

There was a whole time last year that our GP simply said to increase his dose of teg, and keep going up one pill with each seizure, which lead to him being on the highest dose, and still having the seizures...hence where we are now! I have the feeling that tegretol is the wrong medication for him, and that this needs changing, not simply stopping. But none of the drs seem to think thats the way to go.


The only other reason that the specialist seemed to give for NEAD rather than epilepsy is that t'other half is quite a worrier, and is prone to stress, which can cause the NEAD seizures (but also his tonic clonic....)

It just all feels messy!! luckily T'other half is now relaxing, and trying to ease the cramping in his legs and back from his big seizure yesterday!

xxx

 

[valeriedl]

I have all sorts of seizures. Mostly only partials but I will have a tonic at least once a year.

During some of my partials I can talk to someone, respond and do things. Sometimes I may know what's going on. Other times I blank out completely and have no clue what's going on. Usually when I have those I don't even know that I've had the seizure.

During the last tonic clonic I had I was completely aware of what was going on and things that people were saying to me. I was laying face down on the ground, couldn't move and my arms and legs were shaking. I've never had one like that. It was the scariest thing in the world.

When I was first diagnosed, in 2003, I was put on a ton of different meds through the years. Some didn't work, others caused more seizures and some I couldn't handle the side effects. If you can name the drug I've probably been on it at one time or another.

I got a VNS in 2007, I am still taking meds along with it. I also had to figure out what meds worked well with it. I am still having seizures but not as many and they aren't as bad.

Defiantly keep a journal to keep track of how things go with her. By doing this you can let the dr know what's going one. If she's having that many seizures and nothing really seems to be done about it I'd look for a new dr.

 

[Belinda5000]

Mr&MrsP

Have you tried going to a university/hospital to see someone?

I've been to my share of them and I'm not far from one.

A new neuro does sound like what you need.

Everytime I try come off Tegretol I seiz like crazy.

I actually have about 6 types of seizures and meds have never controlled me, I've been to more specialist and I was always kept on the Tegretol been on it since 1975.I've been on to many drugs and nothing works.

 

[arnie]

Hello and welcome! This is a nice supportive group, but it's too bad you have to be here, if you know what I mean. I've put a link here to an article that explains the various types of epileptic seizures. People can have several of these types at once. In my case, my tonic-clonics are pretty well controlled by medication.I've only had 5 or 6 in the last 30 years. I continue to have both simple partial and complex partial seizures. (They call those simple and partial focal seizures in the article). I have several hundred partial seizures a year, mostly complex, and we continue to try different methods to stop them.
You talk about the "smaller seizures" that your husband is having, where he can still hear and respond. With both types of partial seizures you can still be aware of your surroundings, though you probably won't be quite normal in various ways.
I agree with the others that you need to see a different neurologist. It also seems strange that the doc said to increase his medication by one pill with every seizure. I've never heard of that being done as a method of finding the correct dose.
So, take a look at the article and see if you can get another opinion from a different neurologist. Best of luck, and keep us informed about how it goes.

Carry on!

http://www.epilepsysociety.org.uk/epileptic-seizures#.UyxB1847Ego

 

[mr&mrsp]

Thanks guys.

From what the majority say, then i think we're going to try and bring up the fact that it may not be NEAD, and that he is in fact having partial seizures.
The neuroligist issue, we're going to see what he says at the next appointment, and will go from there. Hopefully if we mention all that we've found and read from you guys, he might listen!

the Dr that told t'other half to up his meds after each seizure was a bit useless, and didnt really seem bothered by anything we tried to say. Thankfully, we now have a new gp, who is much more understanding!

Thanks for the advice etc everyone, youve made us feel very welcome xxx

 

[StephMol]

Hi Mr&MRSP

Appologies for the looooong message that is about to follow. (And my terrible spelling)

So, I reciently joined this formum as I had been having partial seizures over the last two years and had been on 4 different medications and NOTHING changed, I just kept on having the siezures and they were occuring on average every two days. I did not have an aura and had no warning when they were coming. When I did have them I was completeley consious. It was the after affects that wiped me out.

My neurologist recommended me to a specialist as after all the meds and all the MRI's and EEG's I have had something should be working or we should know what was going on, he told me that it looked like I would need an OPP or a VNS implant.

I went to see the specialist earlier this month and he admitted me to an EPILEPTIC MONITORING UNIT. I spent 5 days there hooked up to an EEG and Video (Not much fun).

So the shocker that hit me was the diagnosis. I have non epileptic seizures!

Still a seizure but is not caused by an electrical burst. The seizure is a shut down of the brain. And this is all due to mental stress.

He explained it as follows to me:

Somewhere in my formative years there would have been an event that occurred that wired my body to react in a certain way when that event occurred. The way my body reacted was to go to the primal brain stem function of using adrenalin to activate the fight/flight mode.

Then through my life, my body has continued to operate in this mode whenever there are anxious or stressful events. So over the last 35 odd years instead of using correct chemicals to deal with situations such as serotonin, dopamine etc, I have been operating on adrenalin alone in this fight / flight mode. And my body has reached the state where it can no longer function and has burnt out as the body is not designed to function in this state on a constant basis. (The neurotransmitters /receptors have been wired/programed to react with adrenaline instead of the relevant chemical that it would ordinarily use in the respective situations.)

It up regulates the sensory part of the brain stem so that I have sensory overload and it also under regulates motor functions such as speech, muscles, vision etc.

When there is too much of an overload of senses then this causes my brain to shut down and have a “seizure”, PSYCHOGENIC NON EPILEPTIC SEIZURES. With me, my leg muscles weaken so that I can’t walk properly, my speech goes and I can’t find words, my vision blurs to be in a day dream like state and I become extremely fatigued etc.

The following areas are all affected:
• On a constant basis my body is completely tense and exhausted
• Physical energy is depleted and is extremely fatigued
• Social interaction - withdrawn
• Mood,
• Anxious and highly strung
• Concentration
• Memory and hence the ability to carry out tasks (when remembered) this feels like a dementia is occurring (pseudo dementia)
• Light is too bright and sound is too loud
• Overwhelmed
• Strange sensations on the skin, pins and needles, the feel and touch of certain things become horrible, clothing feels uncomfortable etc.
• Hypersensitive to crowds and too much activity around – wanting to get away
• Disturbed sleep / unable to get to sleep
• Appetite is affected

He indicated that this is serious as if it was epilepsy only 1% of my life would be affected (when on correct meds) but this affects 99% of my life. This has subsequently developed into a pathology, a disease where actual physical symptoms have developed (SEMATIC FORM DISORDER). This is a disease that is easily misdiagnosed!!!!

I am now seeing a psychologist and a psychiatrist firstly for antidepresent meds and secondly to work through reprograming the way my body acts under stress.

When he told me the diagnosis I was shocked as I am a very together incontrol type of person (the incontrol seems to be the mental issue here!) BUT it all made sense as soon as he started telling me about it. I can't go to shopping centers as there is too much noise and too much light and my sensors start to upregulate, and I have a seizure!

I have a problem with walking after a seizure and he also told me that he had a patient who would be wheel chair confined for months at a time after a seizure. So this is serious stuff. When I was first told I felt almost embarassed. Like o gosh I have a mental issue and have must have been faking this. But this is so far from the case. This is real and affects a huge number of people and they go misdiagnosed never getting the opertunity to get better. And hense this is why I am sharing my story.

PS. I did a bit of research and I found that there are cases where people can have both epileptic and non epileptic seizures! Stats also show that about 1 in 5 people who are monitored in the EMU are actually having non-epileptic seizures.

My recommendation is to try and get into an Epileptic monitoring Unit to confirm the diagnosis. I can't see how WAITING to see what happens will or will not confirm this! Leaving a person with no resourses on how to cope with NES to me is horrific! I can't see how I would be able to get well if I was not proceeding with psychotherapy and anti-depressants. I would think that I would only get worse as everything would become even more stressfull.

If it is non epileptic seizures you don't want to be on antiepileptic drugs, this is REALLY BAD! and path to wellness is there. If it is epilepsy then having confirmation on what seizures are occuring is the best possible outcome as the correct antiepileptic drug that works for specific seizures that generate from specific parts of the brain can be administered. The EMU process will confirm this.

I would recommend this route to any person who is not getting results from their meds. It costs money and there doesn't seem to be a lot around. Here is in South Africa there are only two, but at the end of the day, you can get onto correct meds or get off wrong meds like me.

PS. It took me 4 neurologists over 2 years to finally get onto the correct path, the first 1 I left after 1 month, the second 1 I had just 1 consultation with (she told me I had a virus), if what you are being told does not feel right get a second and a third and even a forth oppinion.

As a last thought if you feel like you should proceed with what you are being told with this neurologist, ask him to recommened a psychologist and a psychiatist, there will be no harm done in having a visit.

 

[Cint]

Years ago, I wasn't diagnosed properly and I DO have E, so it isn't always that easy to get the correct diagnosis. It is very difficult for a "regular" neurologist to know the difference if they have not been trained properly. I think we have all been suggesting that Mrp see an epilepsy specialist (epileptologist) to find out if his seizures are actual seizures or NES. And with E, especially TLE, often times, a need does arise to visit a psychologist and a psychiatrist. But if so, make sure they are a neuropsychiatrist and neuropsychologist.

Check out this website for info about PNES:
http://www.epilepsy.com/article/2014/3/truth-about-psychogenic-nonepileptic-seizures

 

[mr&mrsp]

Thank you Stephmol! Youve explained what i was attempting to perfectly! all the neurologist suggested was that it could be NEAD, and that we should look at some websites to help...(i'm sorry but i thought it was his job to help give a diagnosis...not direct us to websites?)

Cint, as stephmol stated, it is possible to have both, and i think that what the neurologist was trying to get at with t'other half, but i do agree it's very difficult to be told exactly what he has!

About the EMU, the neurologist mentioned that to us, but seemed to think he was definite in his diagnosis, so it has fallen by the wayside. I think when we next see him, i'm going to mention it again, as i think thats what would be helpful.

He's currently in bed sleeping, but its now been 7 days since his last seizure...fingers crossed for an easy week.

xxx