i posted last summer - simple partials?

[leoniedelt]

asking for some help / info on the difference between simple partial seizures and panic attacks.

I wanted to put an update up, and ask for any more advice that might be out there.

I saw my GP in September, she basically thought i was taking the p*ss. She told me to go away and see if i could set off my symptoms by staying up all night. [eyeroll] . I saw her again in Dec, asked for a referral. After chasing receptionists at the hospital and my GPs several times, they finally communicated and faxed in a referral.

I saw the registrar on 30 Jan. He was a most unhelpful person - presumptious, arrogant, judgemental, etc. He said so many things to me that were totally uncalled for, but basically his summary is that I "am an overanxious person who needs to stop thinking of myself as having something wrong with me because i havent, and its not good for the kids." (quote) And its the childrens' fault, cos they have autism and stress me out innit. [massive eyeroll]

He ordered the sleep deprived eeg, which i had a week ago friday, and an MRI, which is coming on saturday, and then i have a followup with the consultant himself (not a lackey) on Monday 4 march.

Anyway, my symptoms are: 10 second (give or take) bursts of fear, stomach rising into my mouth, dizziness, a weird indescribable pop-eyed feeling, and if i'm talking when it happens, an inability to finish my sentence / stuttering / mumbling / etc. Since August (when i started keeping daily notes) i have woken 13 times with a bitten cheek/lip and I have woken twice with my right forearm twitching on its own.

After writing everything down, daily, since 11 August, i have determined a slight frequency to my periods, a mode of approx 3-4pm, and sleep deprivation is definitely a factor, as is stress, in increasing overall incidences. These "events" dont happen when i am stressed, they happen randomly it seems.

I also had an EEG 15 years ago that was Dysrhythmia grade 1, it was post-ictal, i had a tonic-clonic about 2 days before that EEG was done, and i had many more seizures in the late 90s. I had a proper diagnosis of epilepsy, lost my driving licence in the state of Michigan and all that, i was on meds, and no one thought i was an overanxious person.

I live in the UK now, and they dont accept the diagnosis, it has to be re-diagnosed, which is the problem.

Anyway - since I can find no information out there on a "10 second panic attack" and these episodes i have do not meet DSM-IV criteria for a "panic attack" anyway, AND i have a personal past history of epilepsy, i am particularly annoyed / stressed about it all.

Please, any advice for this upcoming consultant appointment. I'm really nervous - i've never met him, i've no idea if he'll be the misogynist his registrar was, and i'm scared.

 

[jyearta]

Hi, I sorry to read all you are going through.

I Have E. and have had several panic attacks.

I can't tell what is happening. Sorry.

Can you get a copy of your medical records to show the Dr. in the UK?

Is bad enough to have seizures or for that matter panic attacks. I would think it's important that you are treated NOW

I too have DR. Neur. just the way you describe this one. I just find me another one, I have seen around 7 dr. or Neru.

Don't stop until you get answers, you are the one living in all this. I can understand you being scared, mad about all this.

----HUGS----

 

[leoniedelt]

Hi, I sorry to read all you are going through.

I Have E. and have had several panic attacks.

I can't tell what is happening. Sorry.

Can you get a copy of your medical records to show the Dr. in the UK?

Is bad enough to have seizures or for that matter panic attacks. I would think it's important that you are treated NOW

I too have DR. Neur. just the way you describe this one. I just find me another one, I have seen around 7 dr. or Neru.

Don't stop until you get answers, you are the one living in all this. I can understand you being scared, mad about all this.

----HUGS----

All I have is the eeg report, the MRI report, and some prescription repeat slips from the 90s. The hospital I was admitted at for the big tonic-clonic back in 97 only keeps records up to ten years, so my records are long gone.

I've given my doctors here what I have from back then. The registrar said 'that's not epilepsy' when he looked at it. I don't know what to think. I won't get treated 'now,' I've been living with this for at least 18 months with no meds, and 12-13 years if I go back to when I quit taking the lamictal... The NHS doesn't move that fast, unless its big and obvious on the outside...

 

[qtowngirl]

I live in the UK now, and they dont accept the diagnosis, it has to be re-diagnosed, which is the problem.

well this isn't happening. FUCK them, and sorry to be blunt but with E, to docs, neuros, even receptionists, that is unfortunately the stance you have to take sometimes. i too had a neuro that was just like what you said, arrogant, said things way out of line, etc.

having a proper diagnosis of a disease is 'case closed,' when it comes to your address anyway. it's not open for discrimination just because you move. what??? epilepsy doesn't follow people when they leave the country? you no longer have it because they didn't say you did? I WOULD BE FURIOUS!! if your diagnosis was in the late 90's the clinic/neuro who determined it will still have your file, even if it's in storage somewhere, it will still exist. you have legal right to have them pull it and send it to your new clinic. one chat with a lawyer and they'll say the same.
this is a life-threatening disease ffs! be loud and be proud, that's the only way to fight through idiots like this. :bigmouth:

 

[leoniedelt]

well this isn't happening. FUCK them, and sorry to be blunt but with E, to docs, neuros, even receptionists, that is unfortunately the stance you have to take sometimes. i too had a neuro that was just like what you said, arrogant, said things way out of line, etc.

having a proper diagnosis of a disease is 'case closed,' when it comes to your address anyway. it's not open for discrimination just because you move. what??? epilepsy doesn't follow people when they leave the country? you no longer have it because they didn't say you did? I WOULD BE FURIOUS!! if your diagnosis was in the late 90's the clinic/neuro who determined it will still have your file, even if it's in storage somewhere, it will still exist. you have legal right to have them pull it and send it to your new clinic. one chat with a lawyer and they'll say the same.
this is a life-threatening disease ffs! be loud and be proud, that's the only way to fight through idiots like this. :bigmouth:

Evidently epilepsy switches off at the UK border. </sarcasm>

I am tired, very tired, of being made to doubt myself, of having no meds, at struggling to function, its frightening. Just cos no one else can see it doesn't mean it isn't real...

Thank you all for your support. I'm going to go look through my Gp records, see if there's anything else interesting I can take along to this new consultant.

 

[jyearta]

I can believe they don't have the records somewhere.

I have worked, where I've had to pull records out of storage or either go through tons of microfilm. This was even about someone health.

 

[leoniedelt]

I can believe they don't have the records somewhere.

I have worked, where I've had to pull records out of storage or either go through tons of microfilm. This was even about someone health.

The hospital claim they shred them. I rang and asked, last week. From abroad. They said they're still dumping 2002's records, and about to catch up to 2003. I was admitted in 97, my records are long gone.

edited: even if i found all the records, the NHS will not accept a diagnosis, they will not "grandfather" a diagnosis in - they insist on re-doing it themselves. Its an ego thing, i suspect. Having epilepsy entitles you to free prescriptions (i already have those) and a bus pass, i guess they dont want to give "disability" to anyone willy nilly.

 

[qtowngirl]

there has to be records other than in a hospital. you would have been diagnosed by a neuro or epileptologist, and they have offices. in all my years i've never heard of someone's complete file being kept in a hospital. that's what hospitals are for - doing the tests then sending the results to the doc's office. put up your fists hun, there is no way there is not a record somewhere, they're just being lazy.
i too work in medical records - just entered data the other day from 2010 with a 'destroy' date of 2039. that's 29 years. seriously, fight fight fight, they exist.

 

[leoniedelt]

there has to be records other than in a hospital. you would have been diagnosed by a neuro or epileptologist, and they have offices. in all my years i've never heard of someone's complete file being kept in a hospital. that's what hospitals are for - doing the tests then sending the results to the doc's office. put up your fists hun, there is no way there is not a record somewhere, they're just being lazy.
i too work in medical records - just entered data the other day from 2010 with a 'destroy' date of 2039. that's 29 years. seriously, fight fight fight, they exist.

again, even if i found everything, it wouldnt matter. the NHS will insist on re-doing it.

 

[leoniedelt]

again, even if i found everything, it wouldnt matter. the NHS will insist on re-doing it.

I found some interesting paperwork in the garage this evening, inc Lamictal and Ativan repeat slips, and my written permission for my GP to photocopy everything to do with my epilepsy, my migraines, and my old scans.

 

[qtowngirl]

love it! that's great! persistence is key. sometimes it's a bitch, but it works

 

[leoniedelt]

Do you think it will make any difference to the consultant? My GP seems to not "believe me" regarding the old diagnosis, and the registrar i saw also didnt believe me, or else he wouldnt have accused me of being an "overanxious person"...

 

[leoniedelt]

The registrar rang me on my mobile a few hours ago, to apologise for his behaviour...

I'm not sure what to think now!

 

[jyearta]

I'm glad to hear he apologized. I haven't hear anyone apologizing.

I do hope this means you will be getting some of your records.

 

[leoniedelt]

I'm glad to hear he apologized. I haven't hear anyone apologizing.

I do hope this means you will be getting some of your records.

i have a few prescription repeat forms, the EEG and the MRI results from the 90s - i dont have any other way of getting anything else from back then.

 

[leoniedelt]

Old GP's office trying to pull records out of storage for me - will take several days. from another country, its a bit awkward. $25 copying fee for the most recent 2 years they have, she said. Call her back on Wednesday.

Old neurologist's office doesn't seem to answer the phone any more. It is like 13+ years later fgs!!

 

[jyearta]

I have learned NOW each time I go for anything (Dr. hosp. etc) I ask for. copy of that visit. It doesn't cost anything and I keep everything in order in a file.

 

[leoniedelt]

trouble is, even if i get ahold of papers i dont already have, it still doesnt prove anything.

 

[jyearta]

Sorry, I not following. If you get copies of your records why wouldn't it matter.

I know that each time I change Neur. I take copies of my records, but they still want to run test, saying they need a base line of where I am as of that date. I understand what they mean, but I haven't had a Dr. that said I didn't have E.

 

[leoniedelt]

Because the NHS does not accept it, no matter what paperwork i can dig up. Even if i find incontrovertible written proof that I was diagnosed with epilepsy 15 years ago, it does NOT mean that they will accept that I have epilepsy TODAY.

Like i said, i have already shown them my EEG from 15 years ago, my MRI from 15 years ago. I have dug up prescription repeat forms for Lamictal from back then. It will not matter. They disbelieved every word I said, and blamed all my symptoms on "anxiety".