New here, in search of support and information

[Cadianne]

Two years ago I was diagnosed with PNES (pseudo seizures) after an extensive stay in the hospital. Upon the diagnosis I was referred to a Psychiatrist and a Psychologist for my continued care. The Psychiatrist handled the meds and the Psychologist did testing and counseling with me for the last year and half. The Psychologist determined that even though I've suffered a lot of trauma in my life it is not the basis of my seizures. Over the last 6 months I have lost more and more work and spending more and more money and time in the doctors office and the hospital due to severe migraines and seizures. I am 43 and am frustrated that after a lifetime of not having any health issues that I am now having uncontrollable seizures, excruciating migraines and 10 different meds I'm now to take.

Mayo refused to take me as a patient saying I am not of medical importance. When my seizures hit I get severe head tremors and shaking along with body convulsions. My speech becomes altered so much that I slur, stutter and sometimes can't say certain words so I have to interpret my thoughts as I try to speak. Along with the speech issues, one side of my face goes numb and the left side of my body looses strength and walking is sometimes impossible. I am able to drive short distances only due to the fact I can sense when the seizures are going to hit and I can pull over to the side of the road if need be. Most times I just have my husband chauffeur me around.

Lately when I end up in the hospital the doctors are just trying to monitor my pain and reduce it so the seizures will stop, that is all they know to do for me. All medical tests are negative so that is a praise along with that my job is understanding of my situation and have protected me losing my job due to too many days off by putting me on the Family Medical Leave Act. I am loosing hope and faith that something can be done to help me.

Does anyone have any knowledge they can share with me?

 

[Kgartner]

Since you are a migraineur, is it possible you are actually having complex or hemiplegic migraines? I only know about these because I have a friend who suffered from them. In her case she also had epilepsy which she had surgery for - after the surgery she began having migraines. When they became "complex migraines" they at first thought her seizures had returned, but ultimately the seizure-like symptoms were diagnosed as a kind of migraine.

She was already being treated at a Level 4 epilepsy center so had contact with extremely competent neurologists - otherwise I doubt that this would ever have been diagnosed since it is pretty rare. I don't know where you are currently being treated, but if you want to pursue this further you will probably need to go to a large teaching hospital in a major city.

Read this description from WebMD - some of your symptoms seem very similar: http://www.webmd.com/migraines-headaches/hemiplegic-migraine-headaches-symptoms-causes-treatments

 

[Cadianne]

Thank you. I know I have several kinds of migraines but none that originate in the brain from what the MRI's have shown. I have zero scarring on my brain which is amazing since I've had a constant headache for 27 years. On a daily basis my headache was always around a 4 (from 1-10) and now it is up to a 7 or higher.

I am scheduled to go to the University of Nebraska to their medical department in January, but prior to that appointment was hoping to glean as much information as I can on what is going on with me, what could happen and what other people have experienced themselves. I'm saddened that after a 6 hour drive (one direction) I will only be seen for at most an hour.

I will look at your link....thank you!

 

[Porkette]

Hi Cadianne,

Welcome to CWE! Years ago when I was a kid I started having migraine headaches and that in turn lead to me getting epilepsy. At first the neuro I was seeing thought that I was having pseudo seizures because they could find no problems but what the problem was is the damage was so deep in my brain that not a single test showed any damage.
I started to see an Epileptologist which is a Dr. who specializes in epilepsy and this Dr. did detailed tests on me and they found bi lateral lesions on the right and left temporal lobe of my brain. My advice to you is to see an Epileptologist along with a neuropsychiatrist the 2 Drs. work together as a team and they can find out what's going on. I also was put on CBD (medical marijuana) and I was very surprised how that reduced both my complex partial and absence seizures. I wish you the best of luck and May God Bless You!

Sue

 

[Cadianne]

Many have suggested CBD but I have yet to hear if it helps with the pseudo seizures. I did have an EEG done when these first started and nothing showed that any of my nerves inside my brain were being fired for epilepsy. I've had I think 4 MRI's and a CT scan to see if there have been any changes and so far there hasn't been. Where I live I don't have easy access to a lot of specialists so learning of new ones is always a bonus for me. Thank you for your kind words and encouragement.

 

[Frink]

Sometimes Lyme disease and or it's co-infections can mimic seizure activity.

 

[seagull]

Have they done test for other nuro problems..The migraines so debilitating unless you have it no one should judge migrain part of my e far worse than odd state of alter state of consciousness on level with the panic aura things between I don't know about unless body bleeding on the fall down often break bone usuall I have second to try make the fall better fall often loose teeth broken arm leg and this year.
I do get speech problems short time what makes them thinking you not got it bad enough to treat what's there criteria to me if condition bad enough cause living problems however small then bad enough for treatment.
if you pay regular health insurence surely this comes under it.
any how welcolm

 

[Cadianne]

Hopefully this new doctor I see in January can help. I don't have much hope at the moment. I wish we had the technology today that they have on sci-fi movies and the tv shows that can diagnose with a simple scan.

I never dreamed that at my age or in my lifetime that I'd have a debilitating health issue that prevents me from do even the basic of things at times. I'm thankful my children are grown but I am saddened I can't spend quality time with them or my grandkids when I'm having a bad day.

Thank you for the welcome.

 

[Porkette]

Hi Cadianne,

When you see your Dr. you may want to ask about having a spect or pet scan done if you haven't had one yet these tests show a lot of detail of what's going on in the brain.
Also you can ask your family Dr. to refer you to an Epileptologist if you are interested.
Wishing you well and May God Bless You,

Sue

 

[Cadianne]

Thank you Sue! I will ask.

Sent from my XT1254 using Tapatalk

 

[Nakamova]

Hi Cadianne, welcome to CWE!

If it hasn't been mentioned above, would just like to stress that a positive EEG can help confirm an epilepsy diagnosis, but a negative one cannot rule it out. The EEG is an imperfect test. Some seizures are too transient, or occur too deep in the brain to be recorded on an EEG. I hope that you are able to see an epilepsy specialist who will reconsider the epilepsy diagnosis and who will also take a close look at ALL your medications. Ten meds can potentially interact in ways that may be making your health worse. And if they aren't helping, then perhaps you might be able to do without one or more of them.

If you don't mind me asking, which medications are you on right now?

Best,
Nakamova

 

[HMalsbary]

Hello Cadianne, I know eveyone has been talking to you. I have epilepsy too. This is for your husband. For I know how scard my hubby get's when I go into a seizure.
Cadianne/ Husband, Cuddle each day, Hug each day & Give or do that special little thing, that only you two know about that makes you smile

 

[Adnilem]

Hi Cadianne, I'm probably not that much help, other than to say you're not alone. I have had epilepsy since I was 15 years old (now 37) but a recent whiplash incident has brought on "neurological" migraines are what the Dr is calling it. Basically similar things to yourself, I've had the droopy face and arm numbness (the same as a hemiplegic migraine) but also severe difficulty walking, constant dizziness with bouts of vertigo, drop attacks (that aren't drop seizures, I've had those and they are completely different) and the occasional occiliptical* (spelling) migraine thrown in. I'm not sure if you have had whiplash or concussion in the past but they might be linked? There are stacks of forum posts from whiplash and migraine sufferers with similar symptoms. Sadly there doesn't seem to be a simple answer. I've had a lot of success with homeopathic remedies, it's worth a try if you haven't already. Please reply if you find anything!! All my mri's so far have come back normal or with things that don't explain the symptoms.