Epilepsy Clinic appt. sitting before god.

I was oh so very honoured to be wheeled into the office of the lord-high-neuro-epilepsy-god himself yesterday. I am sure I was supposed to be suitably impressed. I wasn't.
He started by telling me I don't have epilepsy.
"I know that," I said "My seizures aren't like that and I don;t lose consciousness, just awareness."
"It's not epilepsy."
"Yes I know, but can we stop the seziures?"
"EEG was clear."
"I know but the seizures..."
He said he knew I'd had an admission to hospital. I explained briefly that I'd had a lot of seizures that day and so the kids phoned an ambulance and I was admitted.
"The people who saw you are not neurologists," he explained, "So they don't know what they were seeing."
And were incapable of writing a description it seems. I happen to know as I saw the letter which said I'd had a couple of "muscle spasms". The letter was written by the female medic who hadn't seen me until later (post antibiotics) and didnt take a history. No wonder it's difficult to bloody tell what happened to me.
lord-high-god wasn't interested in the fact that both times I had seizures I had an infection.

I raised the question of ANS disorder because new research shows FMS may be dysautonomic. I tried to raise it without telling him his job (him being god an'all) but he was immediately dismissive.
"So," I asked "You know I have a dx of fibromyalgia. Do you accept it as a real disease or are you in the "it's all in yer'ead" camp?"
Fair question I thought. My goodnes the effect on him! He quite literally physcially squirmed about in his chair. He refused to answer but I guess that was my answer!
He launched into a lecture about how awful epilepsy is and how good it is I don't have it.

I've nursed people on the nasty end of epilepsy so I know how nasty it can be when it's uncontrolled. But I am also well aquiainted with lots of people with epilepsy who lead normal lives. They aren't in daily pain, stuck in a bloody wheechair and unable to think, see or stand straight. Not having epilepsy doesn't make my life any bloody easier!
I felt like telling him to ...well I'm trying to be a good Christian girlie so I;ll keep that to myself.

I told him I had been ill for ten years and was sick of it. All I wanted was the seizures not to happen again, especially as I'd had one in front of my 9 year old son.
Nothing moved him.

In the end he told me he couldn't decide what to do with me until he had seen a seizure. So, I have to make sure there's a film crew on hand for the next one. How lovely. How dignified for the patient.
How the hell was medicine practiced before machines? Hippocrates didn't need a bloody film. He took a history!!
Fortunately my kids have a sense of humour and are up for filming me when it happens again. My instructions had been that when it next happens they were to leave the room and let me get on with it and I'd call them back when it was over. My new instructions to the little ones are to leave the room and call for someone with a camera. Delightful!

To be fair I suppose seeing one is helpful, presuming he bothers to watch it.

POTS cardio next week.
God help me! Not trusting princes, horses or doctors here :)


Sounds like u had a tough time talking to a specialist. U probably already know this but there are many different types of seizures not just epilepsy. If u have pots/oi problems i would guess that u were having hypoxic seizures. Basically when u dont have enough circulation going to your brain, your brain then has a reduced amount of oxygen and it doesnt like that, so when the brain is irritable from lack of oxygen then one can have a seizure. hopefully seeing the cardio will help this.

Thanks for your supportive comments Heapsreal. I didn't expect a blog entry to get noticed so I came here for a quiet rant.
My SATS can drop into the 80s sometimes, especially when I have an infection, and as most of my infections are throat or chest it;s not surprised my SATs plummet - but neuros aren't interested in basics like that.
Sometimes I wonder if all this specilisation in medicine actually helps. No one seems to know anything about anything outside of his very narrow perview. Holistic care is long gone.
Shell, Excellent rant. I have tried for years to whittle down the giant ME CFS Chip on my shoulder whenever seeing a non ME CFS Doctor or just being in a typical medical setting. You hit many points that I can relate too. Good read, sorry about your experiences. Fight the good fight even though we know the out-come. Some Doctors like the unuasual, most Doctors not so much. Maybe your "walks on water" Dr. will figure it out!
Thanks for your post, it was a good read :) ..

"I tried to raise it without telling him his job (him being god an'all)"
lol aye to that. Neuros I think are the specialists who have that highest God complex.. other specialists eg Gastros, the ones who deal with shit .. in general seem to have less of a God complex then many of the neuros (after neuros i think it is the orthopedic specialists who are the next highest to God).

When I was having my EEGs for my seizures and epilespy ... I was told that one can actually have epilespy and still not have it show up on the scan unless one was having the scan done while actually having a seizure. I actually got told to try to get to the hospital while actually having a seizure (now that's a bit hard when one lives alone and is collapsed seizing on the floor with no control over ones body or even completely unconscious). Also the fact that my incidences only last up to 5mins at the very most, often way less time then that..couldnt get to a hospital that fast even if I were capable of going somewhere.

Fortunately I dont have those happen to me too often (only 1-3 times a year).

I guess I was lucky in a way as my specialist was still verbally supporting I "could" have epilespy causing some of my collapses and I never had any of the doctors say that was in my head. I ended up having 3 EEGs .. looking back on it now thou I think these seizures may of been due to POTS. (a friend who once saw me have one..said my face went very white immediately before I collapsed.. so I assume lack of blood to my head/brain. Ive only gone into these seizure collapses from standing).

best luck with the POTS cardio

ps.. what gets me is how a neuro dont even know that there are other reasons for seizures other then epilespy.
This guy definitely deserves your sarcasm. The truth is that the brain is so complex that only some of the disease processes effecting it are at least somewhat understood. Instead of admitting this truth to you (and himself) he chose to play god. My personal advise-let him play with someone else and find another neurologist who is more open minded and capable of understanding the limitations of his field.
Thank you for all the support. I'm really touched,
The man is twit. I can't ask for another twit because this is the NHS.
He ddn't register that I'd had a seizure in front of my 9 year old. These eejits are so dislocated from normal human life that it never even registered what that must have been like for my son.
I didn't tell him how he couldn't sleep for a month afterwards and kept checking on me because he was worried I might die.
Fortunately he's a sensible lad and we could talk it through and I reasurred him that I wasn't going to die, and promised I'd always be honest about how sick I am.

I think one of the biggest holes in medicine is the fact they think we are machines, not people, and that machines will give the answer. They must know that machines are limited and that doctors very very frequently don't see even what the machine tells them.

And Tania, I agree. Neuros have the biggest god complex I have ever seen. Worse than some of the worst psychiatrists I had the dubious honour of working with.
1. I tend to agree about neurologists having the biggest god complex. Although not all of them and those that don't are truly outstanding physicians and people.
2. Fortunately, kids are much more resilient and sensible than we tend to think.
I am genuinely sorry for your unhelpful ordeal.

From the title you’ve assigned this consultant, it would appear that he holds high office in the field of epilepsy. However, as you so eloquently stated, “you know you don’t have epilepsy.” Thus ostensibly removing him from his comfort zone, so it seemed by his reluctance to engage with you in an adult manner; to discuss and explore your relevant inquiry about Dysautonomia.

Seizures are a recognised aspect of PoT’s and fortunately there is research and papers out there that addresses this man’s deficit of knowledge/ignorance in this area.

Hopefully the PoTs Cardio will be better informed

Though my heart tests showed abnormalities the cardio I saw in March knew nothing of PoTs but thankfully had the grace and courage to admit this.

With a lot of searching I found a Professor with a research interest in PoTs ME/CFS and then ferreted out a Professor of, not only neurology but also cardio-vascular-circulatory; with a special interest in PoTs, autonomic and the many associated pieces of the Jigsaw.

I have tried several times to contact you on chat
It is a long and harrowing journey I understand from personal experience (neurologist Rheumatologist) why you would not want to be subjected to similar and I can see why you would think you cannot ask for another twit

And as you point out it can affect trust, though personally I’ve always trusted horses.......... and friends I’ve made in this community.

Kindest regards
Shell wrote: "Sometimes I wonder if all this specilisation in medicine actually helps. No one seems to know anything about anything outside of his very narrow perview. Holistic care is long gone."

I'm convinced there is waaay too much specialization, and not just in medicine. It is too easy to just point the finger at some other specialist. I actually had a neuro who sent me to see a rhuemy who sent me to see an endocrinologist who ... said I needed a neuro. Honest to God. You can't make this stuff up.

If I had a dollar for every doctor who told me "I can't help you and I don't know who can", I could almost afford to see a real ME/CFS doctor...
Hi Shell, I can well relate to your Dr experiences! Fortunately I have found SOME good ones. I have had one seizure...also when I had an infection...Pneumonia and high temp. Conveniently I timed it to be in the Dr's waiting room where she came out and witnessed it, and helped me. She described it as 1 min tonic-clonic (Grand Mal). She called an ambulance & I got taken to hospital for investigations.

I was lucky it did not happen as I drove myself to the surgery! :eek: Now I am scared I may have another. I had 3 months of not being allowed to drive...per a sensible Neurologist. Having had another MRI & seen two more Neurologists, my plan is to re-visit one of my cardiologists...want to get heart valves & aorta checked. Worried about heart failure too, general poor circulation, Reynaud's, ?vasculitis & ?connective tissue disorder.
“God help me! Not trusting princes, horses or doctors here”
Smart woman! (Although, like allyb, I generally trust horses.)

Did you notice what a nice, cooperative patient merylg is? She had her seizure right in her dr.'s waiting room where she could conveniently observe it. And you complain because your dr. merely wants a video. ;-)

P.S. I am glad that you made it to the surgery, merlyg. That must have been scary!
Thank you everyone
I did manage to have a seizure in front of one of the GPs at our practice. I'd had a seizure at home and then went to the docs to use their nebuliser as my throat infection was effecting my breathing. I'd managed to stay pretty cold until I got there so no seizures. But the neb is set up in what must be a cupboard. Tiny room with no windows and very hot. Temp spiked in there despite me waving a sick bowl frantically at myself and down I went. The GP did see some of the seizure as I was down for a good few minutes. She wanted me to go to hospt but I said no, just give me antibios and steroids. She did and I was ok again. She can't have written it up though because it wasn't on my notes when I saw the neuro.
I really think the over specialisation is a problem. When I was nursing in the '80s there was a big move for multidisciplinary team work for patients. It should have meant, for example, that patients with bipolar and cancer got a joint care programme. And so on. Despite all the talk about MDT work, I never saw it happen. I nursed a severely depressed lady with out of control type 1 diabetes. She died while I was on a week's placement. It was so sad. But all the time I nursed her she never saw a diabetic spec. She had just been written off as a "nut job" as far as I could tell.

I am hoping the POTs cardio is a little more on the ball. I got a call from his sec yesterday to adjust the time I go in so it seems I am actually going to see him and not a registrar. That's a good start hopefully.And I am lucky there's a POTS guy so close to where I live because there aren't many out there.
Sorry Allyb I will have to try chat. I'm not as good thinking up sentences "live" . These posts can take me a while to write. Word confustion and brian fog yuk. I have a blog and posts can take a while to write. I have to go back and check for flurrble flurrble sentences.
On princes and horses that's a ref to a Psalm lol.
My kids are great about all this. Yes, they are far more sensible and resiliant than we often give them credit for. I had a sort of semi-seisure a couple of weeks ago. Four of the kids were there, the three little ones (ages 5 7 and 9) and my older dd age 18. No one was freaked at all.
It's all part of mum's weird illness now.
My oldest Josh (age 23) is a nursing assistant and training as a paramed with St. John's Amb so he is calm and helpful.
And Alex (age 21) takes it all in his stride too.
I am grateful to all of them for that. I know it puts my dh mind at rest when he's at work, that if something happens someone sensible will probably be here
I just have to share this story. So sass backwards! 1993, on Zoloft and Tegretol (used to "augment" the other ), under high stress with a bad marriage, 7yo son with asthma going under anesthesia for tonsillectomy, then I caught a cold, took cold meds without thinking about it as I had to be with it for my son, and had a seizure. I did not know Tegretol was an anti-seizure med. So much for trusting the doc. Went to the ER per the medics' advice... of course, all anyone saw was a woman with a "seizure disorder" who apparently was off her meds. Anyway... went to a neuro... he concluded that I did have a seizure disorder. Off one seizure, quite obviously med related... I very firmly informed him that I did NOT have a seizure disorder. He was set to up that Tegretol dose and make me stay on it for life. Having watched my son have febrile seizures for years, I was more up on the research than this neuro. I requested a second opinion from the HMO we were in at the time. Guess where the referral went... straight to the same neuro! I dropped the issue at that point. Oh, and nearly 20 years later... do you think I've ever had another seizure? No.

So many doctors operate from their own fears and not common sense.

I wonder what percentage of neurologists have actually seen a seizure in real life, not on film?

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