Other Recently diagnosed with pnes

[FindingMyself88]

So I just was released from the hospital Thursday for a 4 day Video EEG. Back in April I started having random passing out spells and we couldn't figure out why. My doctor was quick to blame it on my PTSD and diabetes. It was only when my first EEG came back abnormal that she scheduled further testing, including the VEEG stay.

Until the last day it looked like they were investigating several possibilities. Apparently my brain waves have random frequent high spikes that the doctor's are saying are normal for me. They noticed that every time I had an episode where I get very spaced out, my arm goes numb, I feel shaky inside that my heart rate would jump up. So they put a heart monitor on me but couldn't find out anything else. Every other day of the stay they put flashing lights in front of my eyes. Apparently during this I would go unresponsive for up to a few seconds at a time several times during the testing.

Then out of nowhere they are suddenly saying that my episodes are caused by my PTSD. I brought up that my MRI showed an abnormality that if diagnosed would be called Chiari Malformation. I looked up the symptoms and I had almost EVERY one. But the doctor said my symptoms were "vague" and could be anything. Also that thousands of people have Chiari but are never affected by it so that couldn't be it. But he admitted he wasn't a specialist on the matter.

He did suggest I have a tilt table test done but otherwise he was adamant that it was my PTSD. So I asked him, why would my health be getting worse when my PTSD is getting better? I have been in intense therapy for over a year now and have improved! Am I healed? No, but I am a heck of a lot better than I was. I have went from nightmares and flashbacks every day/night to now only when triggered. His response was "Its not really that you are getting better- your symptoms have just manifested into physical now." So to hell with the hard work I've done, that has nothing to do with it according to him!

I will be the first to admit that my PTSD does make my physical issues worse- I will admit that. But considering the MRI and my known head injury I just cannot believe that my PTSD is fully to blame. I feel like the doctor's can't figure out what is going on so they just decide to blame it on my PTSD. He could NOT explain why I would go unresponsive during the flashing lights. I told him I do the same with cop lights or ambulances, etc. He had the guts to ask me if cops played a role in my PTSD?! No!

So I finally just gave and asked him what can I do about the symptoms. Even if it is my PTSD the symptoms are real because they saw them on the tests. He said nothing but therapy. I told him I have been in therapy for 3 years and that these episodes are dangerous. He said "No they aren't." I said "Really? So passing out and falling at least 2-3 times a week isn't dangerous? Driving and passing out isn't dangerous?" He responded that they weren't as dangerous as epilepsy. So what am I suppose to do? Just deal with it forever because obviously the work I am doing in therapy isn't working according to him.

I am angry, hurt, frustrated, tired, and ready to just give up. I don't even want to follow up with my primary doctor.

 

[Jet]

Get another opinion. My cousin has Chiari and it caused her all kinds of issues. She had brain surgery a couple years ago which has helped but I dont think completely took away her symptoms.

I actually find it pretty offensive that he just sort of casually concluded that it must be your PTSD and not Chiari because "thousands of people have Chiari and are never affected by it". While it may be true that many people have Chiari and are not affected by it it is equally true many people ARE affected by it...a lot of them pretty severely.

 

[scout86]

He responded that they weren't as dangerous as epilepsy.

THAT was a fairly stupid thing for him to say.

Yep, get a second opinion. And discuss it with your T. And maybe even have your T talk to the next Dr. And, look for a Dr with a more specialized background, if you can.

Meanwhile, be careful! Wouldn't want you to get hurt and it sounds like you sure could.

 

[FindingMyself88]

@Jet This was technically my 3rd opinion about the Chiari. I don't have true insurance- only charity care through the medical university hospital. I keep asking these doctors to refer me to the neurosurgeon who would know more about Chiari but they won't.

@scout86 I haven't seen my T in like 2 months because she has been out for surgery. But she will be back this week and I will see her Wednesday. She firmly believes that trauma stores in our body and can cause health issues. But we have discussed this in depth and I think we both agree that the PTSD worsens my symptoms but isn't causing them. I tried telling this doctor that but he wouldn't listen. He brought a social worker in with him. Thankfully he had the decency to not bring in his group of interns. I am furious at myself because I shed a few tears in front of him. Then the SW says "Lets look at the positve- it isn't epilepsy. The first step is accepting the diagnosis." !!!!!!!!!!!!!!!!!!!!!!! I would rather it be epilepsy because at least with that they can give you medicine! But as is I am being left untreated again which scares me so badly! I've already fallen once and hit my head which landed me in the ER. I don't need another brain injury. I fall at least 2 times a week!

I feel like the minute you are diagnosed with a mental disorder they automatically only see that and nothing else. I am literally being forced to get on disability just so I can become independent from my toxic mother again. I want to work but combined with my PTSD and these seizure like episodes no place would hire me or I couldn't do the work. I found the PERFECT job for my PTSD- working at a dog daycare facility. But they let me go after only 8 days because of my episodes being a liability.

 

[Chava]

There is some Chiari in my family. It usually doesn't relate to passing out (or spaciness or heart rate increases...which really do all sound more like PTSD or panic).

Did a radiologist diagnose it on MRI? Sometimes they need to call out everything, even if within the range of typical abnormality. For example, many people do have low-lying cerebellar tonsils, even to Chiari distance, but it's not necessarily considered Chiari because of the space around it, shape of the skull, room for CSF, etc. Besides, the only cure is brain surgery, so unless it's a pretty clear diagnosis with relatable symptoms (usually terrible headaches, and worse symptoms like nerve pain if the Chiari also forms a syrinx within the spinal column). But it's also true many clinicians just don't know a whole lot about it.

That all being said, you deserve more answers for the seizure-like episodes, especially if they are causing you to lose work and injure yourself. That's really a big deal. I'm surprised if looking at some med changes or options isn't a possibility. Do you take anything like gabapentin or other anti-convulsant? Many people take that for pain and also anxiety, but it is really a seizure med. It's pretty safe with most other meds. So I wonder why you couldn't try some kind of anti-convulsant...and if that didn't help then look at something else. ?? The Chiari might not connect, which might be why you feel like they aren't helping answer questions connecting the issues. But it's troublesome if they just aren't answering questions in general or helping you get better assessment and help so you can work but also just be safe.

 

[FindingMyself88]

I also have other symptoms aside from the episodes. Such as I do have headaches and migraines, balance issues, and more. My brain isn't thinking clearly this morning. One big thing is no one could explain why I developed pseudo tumor cerebri after my head injury. Well it says that chiari type 1 can be caused by head injury and that pseudo tumor cerebri can be caused by Chiari. Also they haven't done a spine MRI to see if there is any of those syrinx. But I do get SEVERE back pain and spasms every night from sleeping. Even muscle relaxers and injections don't help completely.

No, he didn't seem interested in all about finding a medication that helps. He said you can't treat my episodes if they aren't actual epileptic seizures. Granted he only specializes in epilepsy so he probably wouldn't know. I use to be on Neurontin for my migraines and it helped some but without insurance it's a bit expensive. And honestly I needed to wait a few days to see my primary neurologist because I felt like I would absolutely loose it if she started on about the whole PTSD thing.

If I weren't getting better at managing my PTSD and having less triggers then I could possibly accept that. But I am getting better slowly with the help of EMDR.

 

[greenleaf]

Hello @FindingMyself88 -- I'm sorry that the medical folks are not helping more...

What occurs to me when reading your account of their reactions is that even well-educated MDs cannot be experts on everything. The brain changes with PTSD -- dissociative subtypes, PNES, etc. are not well studied but what research there is is mostly quite new, and seems scattered across multiple medical sub-disciplines. So in the abstract it's not surprising that the vast majority of MDs won't know all the related issues and possible treatments.

Functional MRI -noticeable changes are being studied in dissociative PTSD only very very recently.... Most medical people don't know about that, and even when they do, the research is in its infancy.

Our culture has had such a tradition of division of "mind" from "body" that it seems that even non-religious scientists have trouble realizing the ways that parts of our brain can interact outside of our "normal awareness", esp. "reptile brain" issues... lumping everything PTSD-related into "psychogenic" can be really unhelpful if it is sympathetic/parasympathetic level stuff. That stuff is not often reachable by sitting in a calm therapy office talking, using the neocortex or whatever. I'm totally not a psychologist, neuro-whatever or anything like that... However I think that medical professionals may actually sometimes be scared by the idea that "they" are not in control of their entire mental experience; given that most human beings I have talked to about this stuff seem to feel that way when push comes to shove, and medical people are human beings, that class I took with Venn diagrams way back implies...

I think that medical folks may have to be emotionally able to face their own existence's dependence upon properly functioning brain parts to really explore all the interconnectedness and not push everything over into "psychology stuff"...

That being said, if you'd like to hear my intuitive guesses based on my own weird body issues (probably ddnos, childhood trauma, lots of muscles with no feeling that wouldn't relax until recently, lots of shaking in some of them, really profound changes in my experiece of (reality?) since I started working on the actual dissociation with appropriate help... I've posted elsewhere here about some of the stuff)...

... if we have dissociated "parts", structural dissociation, maybe sub-neural-networks that aren't well integrated with other parts of our brains' vast neural networks.. with very poorly understood feedbacks & connections between reptile brain, monkey brain, and internet brain... with sub-parts even in there... the connections are chemically based but drugs, as a pretty "blunt instrument", may target way more, or way less, than the specific neural sub-networks that have the trouble due to trauma (and physical trauma!)...

Perhaps PNES is a situation where certain dissociative parts / neural subnetworks/whatever are having particular trouble smoothly integrating? Brains have waves, and my own muscle shaking has always intuitively seemed related to wave problems to me. Emotions and images pop out too when I focus on the body sensations, which for me are mostly left-sided, randomly. Gosh, that sounds really scientific! :rolleyes:

If this is true, then things that help with physical dissociation, somatoform problems, whatever words are used, might also help with PNES? Yay, another really underfunded research area that half the current psych professionals don't even believe in! (I just saw research that fibromyalgia sufferers can have mitochondria dysfynction! What is the CBT technique to help one's mitochondria...? :confused::rolleyes:)

This could include:

• trauma-sensitive yoga like the Boston, MA group w/Van der Kolk teaches;
• trauma-sensitive physical therapists to help you work on balance, maybe strengthening brain connections to balance centers through use;
• a trauma therapist who can teach grounding techniques, body scans, etc.;

lots more things that other folks here are way better at explaining, but there are posts.

Also -- please always remember that your specialized, human doctor's inability to understand the brain and your condition as thoroughly as you (like many of us ) need is not your fault, and there are other professionals who are making more progress, even if I've missed the mark for your issues.

 

[DharmaGirl]

Can you get on Medicaid? That would give you a larger pool of docs to choose from. I understand the frustration, I had back surgery and ended up with more pain and weakness. All the docs, including the neurosurgeon thought I was nuts, and sent me to a psychologist. Two years later, when they did surgery on another level of my lumbar spine, they found that the scar tissue from the first surgery was impinging my nerves and causing my symptoms. They removed the scar tissue and I had no symptoms. Assholes. Anyway, the moral is: don't give up. Don't let them convince you it's your PTSD when you know it's not. You know your body more than they do.

 

[scout86]

The first step is accepting the diagnosis.

That would be a more worthwhile remark if they actually HAD a diagnosis. I'm not sure "It's not epilepsy" is a diagnosis. Both @Chava and @greenleaf have very informative comments. What ever is causing this, there IS a cause and there will more than likely be a way to deal with it. Having your T laid up during all this can't have been easy. I'm glad she's coming back and you'll be able to get her input. Meanwhile, do your best to be patient with yourself. If you have to go on disability to get through this stretch, there's no shame in that and it's not necessarily something you'll need to do forever.

 

[FindingMyself88]

Thank you all for the support. I live in Alabama and basically can't get on Medicaid unless i get pregnant. Go figure. @greenleaf I will read your post later. That's another issue I have- reading long in depth stuff at times. I use to be an avid reader. Now not so much...

 

[FindingMyself88]

Ok so just got back from my doctor's appointment (she is my primary but is also a neurologist) and feeling a little better about things. She agrees with the NES (non epileptic seizures) part of the diagnoses and definitely thinks my PTSD is a trigger- but not the cause. She was very understanding to my frustrations. She said that the brain is a very complex thing and can sometimes have malfunctions without it being electrical spikes/epileptic seizures. She said I have MULTIPLE things against me- my multiple head traumas, blood pressure (although its been great lately), my diabetes, and my PTSD. They all basically work to create a "perfect storm".

So our plan of action is to keep working on getting my diabetes under control, which it is getting better. For now she is putting me back on the wellbutrin for my depression. Once we have everything stabilized then she said she wants to slowly start me on Lamictal. She said even though its an anti-seizure med, it could also help with whatever else is going on. Plus it helps with depression and also migraines which I get a lot.

I was so dreading going to see her today, but overall I feel a lot better about things. I am glad that we do have some treatment options.