• We are a multilingual website again. Read the notice about this.
  • Understand AI use at MyPTSD: all AI use is explained in our AI help page. AI use is by choice here. It exists if you want it, but does nothing unless you choose to use it.

So Many Professional Medical Opinions, So Few Answers...

Status
Not open for further replies.
SeanCharles

SeanCharles

Diamond Member
Hello everyone!

Without sounding like I am attempting to self-diagnose myself, is it not true that we often know ourselves better than anyone else?, Interesting grammar here... I seem to be in a research mode, and I feel in ways that I have/am finding connections/answers that professionals I have seen/will be facing again are puzzled by.

Me being who I am, I have been diagnosed with a variety of Disorders and conditions based on conditions for many years since I was 2! moving forward...

In terms of PTSD, I know that because of childhood and later trauma, I do suffer from and agree with the doc who diagnosed me with PTSD. I am not entirely convinced however, and since I recently had a seizure last year, this last seizure prompted me to look at the connection which I think my professionals miss given that I think they may not realize that I do have PTSD. I do have an appointment with my Primary Care doc and knowing their time is limited, I feel unsure how to initiate a discussion about my thoughts on what I feel IS rather than what their experience is telling them. I am back on a medication for the treatment of seizures which I had taken to the point of running out, thus not having insurance at the time and no refills available I maintained a seizure free (except for some periodic auras that would come and go within a few second, never causing a loss of conciousness. With this last seizure, I could tell from the aura that this one was going to be a seizure. I can't see a neurologist without a referral, and I do have insurance.

Some of what I posted here was posted elsewhere on this site too.

Thanks,

Geordie (Jordy)
 
Hello Dee Morris,

Sorry for the confusion. I am not unsure of my PTSD diagnosis. I am unsure if my seizures are or aren't related to PTSD. I feel I am being treated for Epilepsy with medication for what may not be Epileptic Seizures, rather they may or not be tied to my PTSD. Hopefully this clarifies things a bit more.
 
Yes, that makes sense. Hmm, I didn't think that seizures were a common symptom of PTSD. So my first reaction is that you are a person with PTSD who also happens to struggle with epileptic seizures. Are the seizures a lifetime problem or a recent occurrence? I ask because my brother (undiagnosed PTSD) had epileptic seizures when we were kids and was on medications to control the seizures. He seemed to outgrow the seizures to the point that he no longer required medication but as an adult there was one event that I know about that seemed to have triggered a seizure. It was during an extremely angry moment where he seemed to have lost control of his emotions and he ended up having a seizure. So IF there is a connection it seems like the connection would lie in whatever triggers the seizures. Does that make sense? Like if you're seizing during periods of high anxiety events like a heated argument where your PTSD is triggered as opposed to just randomly having a seizure while you're hanging out and relaxed.
 
Dee,

My first seizure occurred in 1997. At that time I wasn't diagnosed then and probably failed to mention the PTSD at that time. The one thing that I am trying to wrap my head around is exactly what epilepsy is. I know that is a term that is used interchangeably to mean someone who has had more than one seizure. At the time of this seizure, I had been using a cleaning product, I also may have hit my head (not hard enough to knock me unconscious) and also may have been slightly stressed, also this day my schedule was altered having me come in earlier than my regular shift, so sleep may have been affected (less sleep).
.
 
Wanting to help, here are some thoughts:
  • Any person with any medical (epilepsy) or psychiatric diagnosis (PTSD) is respectable. One diagnosis is no better or worse than the other. Are you concerned with being judged?
  • In reading lots of mindbody information-to heal PTSD, our biology, neurology, and psychology are intertwined. What matters is that we take care of ourselves. To be at peace, do you know what came first? Either way, you have both.
  • It is great that you are getting treated for epilepsy, since it can be life threatening.
  • I have had four friends with epilepsy. Their seizures all seemed to get worse with daily stress, even though the main cause was attributed to, respectively, genetic predisposition, food allergies, carbon monoxide poisoning (previous suicide attempt), and emotional tension.
  • Three friends took meds regularly for seizures/epilepsy, to prevent unwanted and unpredictable seizures, to keep themselves safe, to allow themselves to drive, be safe with their kids, etc. The fourth friend who didn't take meds, (emotional/psychogenic origin) refused conventional treatment, used natural remedies, had an unexpected seizure, fell, and died.
  • From what those 4 friends shared with me, their doctors told them that once they had the tendency to seizures, that it would be with them, for the rest of their lives.
Good luck with your exploration!
 
Last edited:
I have seen a couple of neurologists in the past and have had at least three eegs done. I am not sure that the neurologist(s) I have seen are aware of the PTSD though as that was diagnosed after my initial seizure which have similar symptoms of epileptic complex partial seizures and thus have been on two different medications being switched after the first medication was ineffective in preventing the seizures. This second medication was also beginning to prove somewhat ineffective until I weaned myself off the medication because I ran out and could not followup with continued care because of a lapse and transition in insurance. I do have an appointment with my primary care doc. I am doing homework so I can ask the questions, I feel like I am finding and answers, and not really sure what questions I need to ask in order to confirm/deny what I feel I know.

Thanks, Ed. Hope this helps.
 
The biggest question that jumps into my head is how the diagnosis effects treatment options. Do you keep a treatment journal? I did that for a little while when I was first diagnosed to keep track of the medications I was taking, my physical symptoms and notes about any stresses that may have occurred. It helped me to be able to refer back and see how certain treatment plans did or didn't work out.
 
Interesting. I do question these auras which have occurred previously which have not been intense like the one I had that lead to the seizure or the prior seizures.

I did find out today that in the course of this seizure I experienced, I did forget to breath, thus I experienced the changing colors which results when people stop breathing. I did however regain breathing and did come to feeling groggy which I know concerned the emt(s) who responded to the 911 call that was placed. In answer to your previous question, I began looking at a snapshot period in which I noted events from a beginning year (in my case 1989 to 2003) then this morning I realized how far back this actually begins which is much earlier than 1989.

I have started a journal here and will be adding this information to that journal.
 
If an EEG has demonstrated that there is abnormal electrical discharges then you have epilepsy. Clearly you have been diagnosed with that and been on medication that was effective. You stopped taking it and had further seizures - that rather seems to confirm the diagnosis.

With PTSD as a separate diagnosis there can be periods when you are 'spaced' and it could appear to others that you were having a seizure when maybe you were not.

You *could* have epilepsy and psychogenic seizures also.

At the end of the day as long as the PTSD and epilepsy are being treated, separately and together, you are on the right track.
 
Lucycat said:
If an EEG has demonstrated that there is abnormal electrical discharges then you have epilepsy. Clearly you have been diagnosed with that and been on medication that was effective. You stopped taking it and had further seizures - that rather seems to confirm the diagnosis.
Click to expand...

The eeg(s) I have had including the sleep deprived ones, have had some beta activity. As I recall, the strobe testing has never been a triggering factor and doesn't seem to trigger any seizures or haven't that I recall. My conjecture is that in my situation, that PTSD is an underlying condition that was not considered because of non disclosure may be a factor where my neurologist is concerned. On the otherhand, I have two, maybe three cases where the medication was stopped, the first one was treatment/procedure for another medical condition. Another which I admit might have been a combination of SI and other psychological reasons which I have overcome through therapy and self (i.e. meditation, journaling and at one point a peer support program that was helpful at a very needed time when I had some grief work in which I was able to work through all the while I was experiencing PTSD which at the time was not diagnosed. One of my recent medical conditions, which doesn't go away and blood work was not normal for, oddly was normal when the ER did blood work after my seizure.

My seizure event as follows:

I suddenly had an aura which I have had even on medication which would last mere minutes and go poof with no loss of consciousness. This one however had an intensity that concerned me so much that my reaction was to go to the seating area above my department (the Service Deli) and sat at a table. While I was sitting there I noticed the aura growing even more intense which was concerning me since I had not had any like this one at work before. After a time, and the intensity increasing, I began having a shivering and then everything went black! at that point, my body went completely limp and I began sliding off the chair I was sitting in. At one point during the event, I had a witness with me, they were telling me that I actually experienced what a person does when they change color, this is because I had (and I suspect I had forgot to keep breathing!) stopped breathing, she had called 911 and they had her lay me on my side... Then after a bit, I began breathing... And when I became conscious I was feeling a bit sore, and like in previous seizures I was a bit groggy, although I managed to walk to my locker and grabbed my boots and coat from my locker, as I was conscious I was going to be leaving work and going to the hospital via an ambulance.

I find with this aura I had time to react, not a lot of time, but time to get me from a place that would have been more difficult to get a gurney into and out of quickly so I moved myself to the deli seating area. My one mistake was sitting at a table rather than laying on the floor. I have a plan for next time in the event of another intense aura such as that one. I am complying by taking this medication for documentation purposes since I am in the process of fighting for Disability. I see two complications:

1. I am earning above Substantial Gainful Activity because of my earnings before taxes...
2. This seizure, may have been triggered by a chemical I used, and/or a slight head bump (not hard enough to cause a concussion) and stress... Being we're the #1 store in a large retail grocery chain, we're frequently being visited by either our regional or corporate heads. I have also taken on additional responsibilities as a result of this job change which I have explained in one of my other posts and may earlier in this one too... I feel like I am leaving breadcrumbs...

I know this response is rather long and I hope that it does answer at least somewhat what I have been asked.
 
Furthermore, the medication has not been 100% because I have been experience what my neurologist has called "breakthroughs" These are the auras which appear and disappear without a loss of consciousness, in fact they seem to have no ill affects or effects. They come and go. Being on the previous medication that I had weaned myself off by not refilling because I didn't have insurance because I had not re certified my Medicaid, I was transitioning to company insurance at that time and I had to wait until January of that year until the insurance went into effect.


From the standpoint of epilepsy being a history of more than one seizure, I do not deny that definition of epilepsy, given this was my third or fourth seizure. I notice too that my seizures are not tightly grouped in that I can go a few years before having a seizure. Ironically, I mention this in either this post or elsewhere, I recall having an episode at my place of employment years before I was employed there.


Personal observation: When I do counseling, and was off the medication, I notice it seems that the auras were fewer and fewer than they were. I had not had any aura activity prior to one when this seizure started, The last aura activity awhile before this did something a bit disturbing though. I did have one that switched from one side working it's way across to the other side (Right to Left) rather than (Left to Right)

This seizure started in what I believe is my Left Parietal. In observation, with the fact that I am losing consciousness, I suspect that the entire brain becomes involved...(If these seizures are in fact PNES seizures how different are they from the epileptic? I do know that from research PNES resemble epileptic or can mimic them when the underlying is a psychological issue... If I haven't said this already too, I have hyperthyroidism, When I was at the ER I asked the ER doc how that blood work was and he said it was normal, this makes me wonder how? Did the seizure mysteriously mask my thyroid hormone level or what?! <--- Are my seizures affecting my chemistry too?
 
Last edited:
I am staying on the meds for now. I do have an appointment with my primary doc too. Unlike the other seizures, whether or not this was hindsight or whether this was a judgement call on my part, the seizure may have been caught on video. I have not pursued this possibility being the can of worms I may have to also open in order to obtain the video. This is something I am seriously considering though since I realize that the witness may not be credible given their own trauma of the situation. I guess my question here becomes would any video be helpful? I suspect it might or might not although it would indicate what I may have done or not during my blackness period in which all I remember is darkness. I have been wondering for the longest time what happens or what doesn't happen when I am in that stage of a seizure.

On another note: these auras could be a form of flashback, but this last one was brighter in contrast (It's like I can see the brain activity in a way not like watching the monitor of like a machine, it's difficult to explain in words, than the few that have come and gone which don't lead to the unconscious stage. by intense, This one had activity leading to where my nose is and there was this red pulsating dot, that ironically made me think of Rudolph, the red nosed reindeer. then after awhile everything went black.
 
I am still baffled though how a seizure could make a thyroid level look normal, because I have been diagnosed with Hyperthyroidism (when the thyroid is over working and producing the thyroid hormone. Furthermore, I am wondering what that condition is doing to the metabolizing of the medication. One thing I notice, is I am having to empty my bladder quite frequently even after taking the med. Probably about 25 minutes after or even less.
 
Yep. The question is if the thyroid is over producing the hormones, would epilepsy have any impact so much so that the hormone level(s) are normal after the seizure? All this is mysterious...
 
Or would the Psychogenic Seizures be able to control the Thyroid and it's production? I'm still unsure how to approach all this with my Primary Physician... :(
 
I am so lost/confused as to what epilepsy is... I know its a catch-all term, what else is that please? I know I have seizures, I suspect my neurologist may be trying to rule out this 'epilepsy or not' and if he hasn't, will he try every med trying to treat what may not be electrical in cause. I know that flashing lights can trigger seizures, for me, they don't. I dunno if that is indicative or not... In ways Now I seem to be getting some questions I guess... The question is are some of the answers I have related to the questions?
 
I have had an MRI of the brain done... In seeing an endocrinologist, I have seen one... She did take a sample from the thyroid which has nodules which appear to be non-cancerous. My pituitary gland may have some deformity which explains another childhood condition that was dealt with, that being treated with Growth Hormone. Another childhood diagnosis I had and was treated using medication was ADHD... that was diagnosed at the age of 2!
 
My primary Doc has much of that history given the clinic she is with was my childhood clinic, interestingly that clinic is now part of our hospital as well...
 
Something I am going to try and see if I can get a copy of is me having the seizure... Unlike the others, they haven't been recorded! This one has been given where I work has cameras. Another reason I chose the spot I did was to purposely capture the event on video... Why the place has cameras I won't explain. What I will say is those cameras document EVERYTHING... :D

I did some inquiry on that and plan to do some additional inquiry.
 
Ed Norton said:
With all of these physicians diagnosing epilepsy I would believe them, accept the diagnosis and it may be easier on your mind.
Click to expand...

I have major trust issues with the neurology clinic where I live. The problem is The leading neurologist (at least I have seen 1 situation) will turn a patient into a medication pig all in the name of diagnostics, and hiding the truth about a patient's diagnosis. The staff member who does eegs in the office has nearly killed a patient, I don't recall specifics at this moment. I do notice being on this med, I do need to empty my bladder quite frequently (reminds me of the last time I was on Prozac. (Long story there...)
 
The only other option is 350 miles away! for a second opinion... That btw is where the endocrinologist is, and I can see them because insurance failed to pay the bill and I owe everything + intrest which has been growing :'(
 
Interesting!
Ed Norton said:
Complex partial seizures usually do not look like typical tonic clonic (grand mal) seizures; they can be far more subtle....but if this program helps you get an accurate diagnosis then so be it.
Click to expand...

Which program? I am a bit lost there. I suspect too, that the thyroid issue may be from an earlier anti-convulsant I was prescribed when the onset of the seizures started... That was Dilantin. I changed to Trileptal when I noticed that it was not working any longer. I remember then it knocked me silly. I do remember a time when I was on neurotin and the dilantin as well as a coctail of meds around 2001-2003 when everything hit a bottom, and I was given a blessing that I had not realized at the time but had someone point out later...
 
I will start with my Primary doc and see what her recommendation(s) are... If I have to see the local neurologist, I won't like it, but I will present everything to him. If I feel uncomfortable with his opinion, I will find a way to see about a second opinion. I'd consider going to an epilepsy clinic if I could, the problem is cost/traveling and all the arrangements since I am not close to the continental states... :(
 
Because of the seizures I also can't drive, my state won't allow it right now anyway because of her word against mine kinda deal... :|[DOUBLEPOST=1389242965][/DOUBLEPOST]Her being one of the local neuro docs in the local clinic...
 
Last edited by a moderator:
Oh, that... Basically the camera's are watching for Shoplifting. <-- That is what I was wanting to avoid stating....
 
Last edited:
Status
Not open for further replies.

Similar posts

M
  • Locked
General PTSD Supporter, So Many Questions - So Few Answers
Comments
5

Donation drives

2026 Donation Goal

Goal
$1,800.00
Earned
$910.00
This donation drive ends in
0 hours, 0 minutes, 0 seconds
  50.6%
Donate

Trending content

Featured content

Latest posts

Back
Top Bottom