Hello from Northern California
 

Hi :) I've joined NeuroTalk because I am having symptoms of what my psychiatrist believes is some type of seizure disorder. The main symptom I experience is not new; it has been around for most of my life. The symptom is that I sense everything in my environment as unreal, as though I am standing behind a glass wall watching the world. At the same time I have a very powerful sensation of everything (even inanimate objects) being charged with a "life energy". I have had a CT scan (brain) and it was, thankfully, normal. I will be going to an appointment with a neurologist on Tuesday. For now my p-doc has increased my Klonopin to 3 mg. per day because she believes the k-pin is acting as an anti-seizure medication for me.

So that's my story in a paragraph. Of course, if anyone here has similar symptoms I would love to hear about your experience.

Hello and welcome to the NeuroTalk Support Groups.

We have some very knowledgeable members who post on the

Epilepsy Forum

Perhaps if you repost over there you will get some ideas.

All the best for your Neuro appointment on Tuesday.

Thank you, Lara.

Welcome PoppyRoad. :Wave-Hello:

Welcome Poppy,

In another time, in another culture this may have been viewed as a Divine gift allowing you to experience the mystery and beauty of the world. I am glad your CT was normal. If they don't figure this out after your work up and can't get the symptoms controlled take it for a symbol of specialness...

Hoping you find relief soon,
Littlepaw :hug:

Thank you Littlepaw and Kitt.

Littlepaw, my wonderful psychiatrist said the same. If I had others who were like me, it would make a difference. The worst part of this is feeling so very isolated.

You have landed in a soft place. Even if there isn't one single person on the forum with the same symptoms we all understand suffering, uncertainty, medical mysteries and the feeling of isolation. Come here when you need to vent or need compassion or commiseration. You are no longer alone.

Take care,
Littlepaw :hug::hug:

Hi PoppyRoad,
I echo what Littlepaw says, a lot of us here feel isolated IRL, but on this Forum we are a Community. You will find the Forums informative and the members supportive, meander around and Post anywhere, you will be surprised how inclusive this wonderful place is.
Don't ever feel isolated again.

Dave.

Littlepaw and EnglishDave, your posts mean so much to me...I am deeply grateful. Thank you.

Nice to meet you!!
 

Thank you, Darlene.

I saw the neurologist and did not click with him at all. He lacked empathy and seemed to make absolutely no effort to understand the symptoms I was explaining. He said he "won't do an EEG" as long as I am on "all the medications" - as if I prescribed myself medication, as if I am to blame for being on meds.

I explained to the MD that I am on meds because of the symptoms. He just shrugged. This, after seeing a psychiatrist a few days ago (the one who referred me to the neuro, and whom I feel is a very caring doctor)...a psychiatrist who kept telling me that she doesn't believe I am taking enough medication to treat my symptoms.

Ahhh...a big waste of my day and a 50-mile trip. I did message my psychiatrist and let her know that I found the neurologist very unhelpful.

PoppyRoad,
This is exactly what gives Neuros a bad reputation everywhere. For years I saw different ones in the same Clinic EVERY TIME I had an appt. Only one was helpful, all had their own differing ideas on meds, they never engaged because they would be gone by my next appt.
Hopefully, seeing the top Consultant next week - necessary to interpret my brain MRI, and to bring up other issues - will resolve this problem. You should not give up on seeking the right Dr to give you the correct treatment. I have been lucky, I have an excellent Pain Management Team and - until now - have not needed to go back to a Neuro.
The answers are out there.

Dave.

Wow, thank you for your reply. I had no idea that neuros often have bad reputations among patients. I assumed that because neuros are supposedly so well-educated that they could be trusted above any other MD's. I was so shaken up by my appointment...I felt like the neuro was snarky to the point of being abusive.

I certainly hope your appointment next week brings answers, good answers, for you, Dave.

Hi PoppyRoad,

Sorry to hear your appointment did not go better. So frustrating going through that and feeling you wasted your time. I don't know what it is with neurology as a specialty. Having known many neurologists from work experience I found that only very few of them seemed personable, maybe just one of those things. However, there is a big difference between feeling a doctor wasn't personable and just plain didn't listen or blew you off. I think with specialists you expect will need to follow you for some time it is vital that you feel comfortable they are taking what you say into account. I have decided that for me it is less important to like my doctor than to feel confidence in them, but if they don't listen then forget it! There are some great doctors out there and there is no reason to settle. Sometimes it takes a few consults to find a keeper.

Littlepaw

Thank you Lp and Darlene. Your experiences are very helpful. It sure is strange that oftentimes medical specialists lack the ability to connect well with people. Seems like many specialists could use a few classes in human communication skills.