Neurologist...I give up.

[Lotte]

I saw the neuro on Monday, who was very forthright which I prefer...

But, he told me that my seizures are non-epileptic because I have PTSD and in June I stopped self harming (my coping mechanism) he said this is why I am having seizures...the seizures started in January before I stopped the self harm.

So, because I am not self harming (his opinion) my body no longer has the outlet for the emotional distress the PTSD causes hence the seizures.

He said I needed CBT, but not in my town, in London at the Maudsley. Which I refused because I have already discharged myself from the MH team as in my case they have made things a lot worse over the last six years.

This might sound like complete madness, but I would rather start the self harm again than be sent to a mental hospital. I feel like they blame everything on my childhood. I can accept that these are emotional seizures, absolutely but I am not entering the psychiatric world again. No way.

He said my abnormal brainwaves on the EEG were nothing to worry about, that sometimes it's normal to have normal brainwaves.

I get the 'aura' before seizures which he said were me disassociating, and I feel terrible for 48+ physically after a seizure.

I am so confused. I give up and if the only thing that will stop the seizures is self harm then I feel that is my only option, I'd rather that than CBT.

I am waiting for my Nephrology results next Thursday, if they say my body is producing urea and all the kidney symptoms are down to my PTSD then I truly give up. I feel it is their 'get out clause' once they see my MH records.

Sorry for the depressing post and starting a new thread I wasn't sure what to do.

 

[marika853]

Sorry Lotte,
Hope you can come up with some other options besides the self harm.
Good Luck!
M

 

[vixen]

lotte> what kind of self harm if I may ask? I mean Ive heard of alcohol use drug use blah blah blah but, I will say there is neurologists who are not quite right in the head themselves..so to speak, an missy, ive been to the E.R. 1 too many times. do u have a pet? I find that a pet is the best comfort or outlet, if I didn't have my "baby" id be drinking or somthin to a worse extent. get a dog, or something to cuddle and I swear its the best feeling in the world... the shelter is always the best place to find a dog..
~V

 

[tinyfrogs]

Hi Lotte,
I understand the complications of having mental health diagnoses first. I hope you don't give up. After two years of fighting to get a neurologist who didn't just chalk it all up to my mental health history, I finally saw a new neurologist today! The best thing I can think of is to not give up, if the doctors arent helping you keep looking for one who will. I know it is very frustrating and I never thought Id find one. But it can happen.

 

[Tez_20]

I saw the neuro on Monday, who was very forthright which I prefer...

But, he told me that my seizures are non-epileptic because I have PTSD and in June I stopped self harming (my coping mechanism) he said this is why I am having seizures...the seizures started in January before I stopped the self harm.

So, because I am not self harming (his opinion) my body no longer has the outlet for the emotional distress the PTSD causes hence the seizures.

He said I needed CBT, but not in my town, in London at the Maudsley. Which I refused because I have already discharged myself from the MH team as in my case they have made things a lot worse over the last six years.

This might sound like complete madness, but I would rather start the self harm again than be sent to a mental hospital. I feel like they blame everything on my childhood. I can accept that these are emotional seizures, absolutely but I am not entering the psychiatric world again. No way.

He said my abnormal brainwaves on the EEG were nothing to worry about, that sometimes it's normal to have normal brainwaves.

I get the 'aura' before seizures which he said were me disassociating, and I feel terrible for 48+ physically after a seizure.

I am so confused. I give up and if the only thing that will stop the seizures is self harm then I feel that is my only option, I'd rather that than CBT.

I am waiting for my Nephrology results next Thursday, if they say my body is producing urea and all the kidney symptoms are down to my PTSD then I truly give up. I feel it is their 'get out clause' once they see my MH records.

Sorry for the depressing post and starting a new thread I wasn't sure what to do.

Hi Lotte,

Sorry to hear what's going on but :agree: where the MH team are concerned I was on 24hr watch with those and they can make issues worse plus you can't breath without them wanting to know....so keep well clear if it's possible.

Regarding the rest of your issues and what the neuro's stated you can also get a form of seizure called PNES ...also refered as "pseudoseizures."


Psychogenic nonepileptic seizures are episodes of movement, sensation, or behaviors that are similar to epileptic seizures but do not have a neurologic origin; rather, they are somatic manifestations of psychologic distress. Patients with psychogenic nonepileptic seizures frequently are misdiagnosed and treated for epilepsy. Video-electroencephalography monitoring is preferred for diagnosis. From 5 to 10 percent of outpatient epilepsy patients and 20 to 40 percent of inpatient epilepsy patients have psychogenic nonepileptic seizures. These patients inevitably have comorbid psychiatric illnesses, most commonly depression, posttraumatic stress disorder, other dissociative and somatoform disorders, and personality pathology, especially borderline personality type. Many patients have a history of sexual or physical abuse. Between 75 and 85 percent of patients with psychogenic nonepileptic seizures are women. Psychogenic nonepileptic seizures typically begin in young adulthood. Treatment involves discontinuation of antiepileptic drugs in patients without concurrent epilepsy and referral for appropriate psychiatric care. More studies are needed to determine the best treatment modalities.


Lotte please read this link below on PNES.

http://www.henryford.com/body.cfm?id=53213

A big :hugs: to you my friend

 

[Lotte]

I am so, so sorry for not replying sooner...and I feel awful because I had a message that I can no longer reply to :'( I am honestly so sorry to that person.

Sadly, I resorted back to SH and giving up, I think my neuro was right...only had three seizures since doing it again. Felt one coming on today and had to do it again to stop it.

I am the worlds biggest failure when it comes to safe self help.

Thank you for all your kind words.

And, again, please forgive my (not meant seemingly ingratitude at not coming on here earlier to thank you)

I really don't know what else to say.

 

[jenagade]

Don't beat yourself up. Its hard to think that you have a physiological condition only for someone to come say its psychological, especially if you have already been grappling with mental illness. Trust me, I am going through the same thing at the moment.

As for the self harm, I'm not going to say anything to try and stop you, or suggest things that don't work like using rubberbands. I have had a long history with self harm and I totally understand the isolation it causes and the reluctance to reach out for anyone, as well as the guilt you feel for not keeping in contact with the people in your life.

I found the Take This Life forum (like this one but for mental illness) helpful even if just a distraction or to vent without actually having to interact with someone. I think the anonymity of being behind a computer doesn't make you feel so exposed but you still get some semblance of help. When I'm feeling fine I don't go anywhere near it usually, but when I do hit rock bottom sometimes I just get drawn to it and before I know it I've been on the forums for hours and I feel a bit calmer.

 

[George__]

Don't go down the alcohol path please.

 

[Angelita14]

Hi Lotte, I sent you a PM. Please read

 

[Lotte]

Thank you everyone,

Angelita14 I have replied. x

Yesterday I was referred to the Maudsley for treatment, I do not know how they think I will be able to afford to travel there but I reluctantly agreed it has to happen.

I agree that alcohol is not the answer George and ironically the kidney disease is no longer allowing me to drink/smoke or do anything unhealthy anyway...so I suppose that's actually a positive thing about kidney problems!

Has anyone else been diagnosed non-epileptic seizures and had to go to a psych unit for treatment?

Thanks again x