I'm hoping to get some feedback on a matter that is concerning Jim and myself regarding Evie. I have been meaning to mention this for quite some time but as is usually the case, the busyness of our lives has gotten in the way!

Evie has quite florid hallucinations, both visual and auditory. We are learning more of them as she becomes more open with us and also more open in therapy. They are not flashbacks per se. They can sometimes be related to the trauma, when she is stressed or tired (she will see Eric, or hear his voice), but the majority of the time, she simply sees and hears a variety of things, both good and bad, that others don't. Animals, people, objects, and all sorts of sounds. It's pretty much on a daily basis, from what we understand and what she is now admitting to. She says it's one of the reasons she sometimes has trouble talking with us or on the telephone, she remarks that at times the voices are too loud or too many, and so it makes it difficult for her to concentrate on what others are saying. And that in turn makes her anxious or self-conscious.

What concerns us, her descriptions sound very similar to the visual hallucinations and voices described by our nephew David, who has schizophrenia. Schizophrenia is genetic and runs in our family. Additionally, Evie is approaching the age (25-30) when most women develop schizophrenia, and she has a neurological condition known as synesthesia, which is known to be common in schizophrenics.

Evie has been diagnosed with PTSD-SP, the SP standing for "secondary psychosis". Apparently this is a very severe form of PTSD, where the person has pronounced psychotic symptoms. When she had her MRI several months back, it showed hypocampic shrinkage that is thought to be indicative of PTSD, but it also displayed frontal lobe abnormalities, which can indicate a number of other conditions including latent psychosis. From everything we've read here and elsewhere, we have not really seen others with the same symptoms as she describes having. Perhaps others have them and are ashamed to admit it, that is partially what we are hoping to discover with this post.

Obviously we don't want to jump to any conclusions one way or another, we loathe labeling, and we may be overreacting. However we are extremely concerned for her welfare. So is her therapist, who is also undecided about her condition. He is certain she has PTSD, but suspects she may have something more, or at least something unusual, even for PTSD. However he feels unqualified and a bit helpless as he's not a diagnostician. One thing is certain to him, she is not inventing stories for attention (we did consider that at first). If she indeed has schizophrenia, from family experience we know it is crucial that she be treated early on in the disease, to avoid brain damage. Untreated schizophrenia results in permanent brain damage, which only becomes worse as time goes on. We currently do not have a psychiatrist whom we trust, so we are going it alone in many respects until we find a decent doctor for her.

Kathy, I think it would be difficult to clearly stick one's finger upon the correct answer in relation to Evie because your stating schizophrenia runs in your family, thus is a genetic makeup.

For your primary concern relating to your statement:
Hallucinations are actually part of PTSD, visual and auditory, and you hit the nail on the head when you mentioned stress / anxiety. Stress and anxiety are quite powerful, more so than most see, and severe PTSD certainly does come with hallucinations, because I used to suffer them myself when my PTSD was out of control, or that I had so much anxiety I thought I was going insane. Flashbacks actually do contain hallucinations, especially if they are in relation to the persons trauma. If the hallucinations are about the trauma itself, you will find they are just that and related directly to PTSD itself.

Where this situation IMO becomes murky, is that Evie says she is having them about other things now, not just relating to her trauma; and as schizophrenia is within your family, that is a natural concern and possible option now.

PTSD is a very powerful illness, so powerful that it kills people daily, as you are well aware. Not many mental disorders have the power of PTSD, hence why it is one that is noted by most Governments as worthy for disability, yet the majority are not covered, PTSD is though.

Normally I would be able to simply say, it is PTSD causing the problems, though because you have a genetic strain within the family, IMHO its merely going to come down to time and progress. If Evie continues working hard on herself and her trauma, and the hallucinations go away, you know its PTSD. If not, then I think schizophrenia must be seriously considered at that time.

Oh... added, there are actually others here who have posted about hallucinations with their PTSD, though they are in the private PTSD area generally... I think there is some discussion in public though too.

Thank you for your informative answer Anthony. Believe we are most concerned with the hallucinations that are not trauma related. Could give several examples but for the sake of Evie's privacy don't wish to. Doctors have informed us, based on genetics, Evie's chances of getting schizophrenia are about 20% as compared to someone in the general population, who has a chance of 1%. So 20 times more likely based on genetics. Sincerely hope it is simply the PTSD and not something more. Not that PTSD is anything to sneeze at. However. That is all she needs. Another illness.

Wise advice. Believe we shall take it. And agreed, would be very difficult to distinguish what's what at this point. Schizophrenia is a bugger to diagnose in any event. Takes at least 6 months of close observation.

Jim.

Maybe I have outdated information, but my understanding of schizoprenia is that it entails no affect, no appropriate emotion, etc. I'm not a licensed or educated person in this field, but it doesn't seem to me that Evie is schizophrenic. To my observation, she has demonstrated completely appropriate emotional responses, which is totally not the case with schizophrenic people. I think her stuff is more complicated.

Thank you Hodge, I understand your argument perfectly, and I most certainly hope and pray you are correct. However, I suppose I should clarify our position somewhat. Jim and I are not saying we believe Evie currently has schizophrenia, but rather that she may be developing it. For you see, schizophrenia is a very slow developing disorder, takes years to become full blown. Someone who is developing the illness will not display all symptoms immediately. They may begin with one symptom and then slowly develop others. You mentioned flattened or inappropriate affect. No, Evie does not have that currently, however, God forbid she does have schizophrenia, over time her personality will change. She will start to display other symptoms. So this one symptom of hallucinations is a concern, because it it could indicate the beginnings of schizophrenia. However, as you also say, it could also be something more complex, something to do with her PTSD, and that is what we are certainly hoping for.

Thank you for your insight into this matter Anthony. Jim and I greatly appreciate it. We do hope it is simply PTSD, albeit perhaps an uncommon manifestation of it. This morning there was a glimmer of hope for us, as Evie confided that these very peculiar voices and sights she's been experiencing began with Brian's death. We knew these particular hallucinations were somewhat recent, however we did not know they began with our son's accident, as Evie admits this morning. So, that certainly makes us feel slightly different about them, however bizarre they are. The brain is such a complex organism and largely not understood, so who knows what bereavement could be doing to Evie's brain, especially with PTSD added to the mix! The genetic factor remains a concern for us, and we will be watching Evie closely over the next few months.

As my husband remarked, this is a very wise statement, worthy of serious consideration. Perhaps we must simply be patient and see how things evolve. Evie continues to improve in many areas and her attitude towards healing is very positive, that is the important thing.

If people feel uncomfortable sharing publicly, which I well understand, perhaps I shall devise a poll to receive further input. Thank you once more Anthony, your advice is certainly appreciated and valued.

Oh dear, Kathy, well, certainly you know a lot more about this than I do. I cannot tell you how much I hope and pray that this does not come to pass.

As for myself.....When I get overstressed and have a lot of sleep problems I start having hallucinations....more often auditory inside my head...Just part of my PTSD....Please try not to worry too much....Take some time off and do something you like for yourself each day....If something develops outside of the PTSD you'll be better equipped IMHO to deal with it then....Best wishes to you today!!! KEEPING THE PEACE

Thank you wildfire, it is certainly encouraging to read the experiences of others here. And yes regardless of the outcome for Evie, we are quite well educated about schizophrenia and thus will be well equipped to help her as you say.

Some good news! We received a bit more encouragement in this matter earlier this afternoon. We've been having difficulties finding a new psychiatrist for Evie, since we fired the other one. We had contacted Evie's former psychiatrist, who specializes in PTSD, to ask his assistance. He is back in Toronto, his sabbatical being over. He rung us up today, and we had a long chat. He is of the opinion that Evie's hallucinations are what he terms "PTSD psychosis" rather than schizophrenia. However, to be certain, he would like to see her again, observe her and perhaps do further brain examinations. He has agreed to give us a couple of weeks of his time in September, if we are willing to bring Evie to Toronto. Of course we did agree, and are now making arrangements for a trip to Toronto in a few weeks.