Out of the Storm

Hello to all,
I am one of many who don't have medical insurance to help with layers of trauma and long term damages.
Short intro: 17 years of inescapable child abuse (not sexual), then working directly with highly dangerous disaster response for another 27 years.  I've retired from the field work, but experienced NASTY panic attack complications post disasters that lasted for months on end.  I believe all of that (child abuse & disaster operations) layered and combined into C-PTSD.  Many of my friends are combat veterans, they are who I communicate with the most because we have so much in common (good & bad).  I read up on PTSD, spoken with many heavy duty combat guys, and the characteristics for PTSD just didn't fit.  However, C-PTSD does, and fits 100%.  Reading over the causes, symptoms and factors reads like my own personal profile. 
In my career field, decompression is part of the game.  However, my decompression wasn't fading away like it used to, and seemed to morph into dangerous, deadly panic attacks.  I've gone to the ER twice in 2 years because I thought I was having a heart attack.  2nd visit revealed having trigeminal neuralgia (according to the doctor) and I was put on a prescription of gabapentin for nerve pain.  Well, I ran out of those meds and take ibuprofen for cranial pain.  Doctor suggested an MRI, but not having insurance prevents further medical help which also covers counseling.  So, I'm kind of stuck.  Not poor enough to qualify for county/state benefits, and trying to find a job with good medical benefits is next to impossible.
My last series of attacks started 4 days ago, and culminated in vicious panic attacks.  -I'm not going to go into the REALLY dark stuff on these boards; it's bad enough I have to try and 'survive.'
   
Anyways, I thought I'd reach out on here and see what happens with interacting with other people who suffer the same.

Hi UG and welcome to Out of the Storm.  As a fellow sufferer of trigeminal neuralgia and still on Gabapentin 6 months after the first symptoms appeared (I had shingles which resulted in the TN), mind you I am down to 200 mg where at my worst I was on 900 mg plus Keterolac for acute pain.  Anyway, TN is excruciatingly painful and when you're trying to deal with CPTSD and possibly PTSD (CPTSD is often accompanied by PTSD) at the same time, it's a LOT to manage so I'm glad you found your way here to OOTS.

If you haven't already done so please have a read through the Member Guidelines here http://outofthefog.net/C-PTSD/forum/index.php?topic=12.0, and some of the forums so you can get a feel for what we've been discussing and see some of the resources.  One resource you might want to have a look at is Pete Walker's "13 Steps for Managing Emotional Flashbacks" which may be what you're experiencing.  It can be found here - http://www.pete-walker.com/flashbackManagement.htm. We also have a thread on self-soothing which may be helpful here at http://outofthefog.net/C-PTSD/forum/index.php?topic=106.0

It's a lot to take in so I recommend you take your time and in the meantime perhaps make a few posts so that members can welcome you and you can get to know us.  Jump in anywhere!

Again, welcome and I hope you find the info, support and encouragement you need to move out of the storm that is CPTSD.  :hug:

Hi Ghost! Pleased to meet you. I hope you'll find something here that helps. From what you and Kizzie said, you must be in considerable pain, and then to have CPTSD and panic attacks on top of all that... I'm impressed you're still functioning. I hope life will get bearable again for you soon. Hang in there.

Welcome Ghost!  Sounds like you found the right place, and I hope the community here will help.

For me, it seems like when I stop, the body lets out what it has been holding for so long.   It seems like it is all coming at once for you.

I love what Kizzie wrote you, and there are many answers in what she shared.   I would also add Peter Levine's books of Waking the Tiger, or The Unspoken Voice, and there is his www.traumahealing.com web site also.   Libraries often have the Levine books, and used inexpensive ones at Amazon, or www.half.com.   Levine's books discuss our bodies storage, and release, of the trauma.

I so wish the disaster team you were with would cover your recovery costs.   :yes:

Hopefully, this fast train of pain from trauma can slow down substantially, so it is at a manageable slow pace that you can process and recover from to wholeness and health.

Unconscious Ghost - Welcome! I hope too that you find something here worthwhile. I find it interesting how people with such histories can be drawn to crises management. It's what some of us were "trained" to do from such a young age. It sounds like you've got a lot to process through. Hopefully, you'll become comfortable enough here to let us help you through some of it. I understand "I'm not going to go into the REALLY dark stuff on these boards; it's bad enough I have to try and 'survive." It's not easy to share the really dark stuff. I don't know if I'll ever get to a point where I can do that, with anyone.

Kizzie: The TN mess started this time last year and continues to this day; thankfully I don't have shingles, I'll get the shingles vaccine whenever I can afford it.
As I said, I didn't know what TN was until I wound up in the ER thinking I'd finally had a heart attack.  Beforehand, I was going to two dentists to see if I had two abscessed teeth on the left side.  After I left the ER with that new found revelation/diagnosis of TN, then I got online and figured it out.  However, since I cannot afford medical insurance and don't qualify (poor enough) for county/medicare assistance, I STILL have no idea what is causing the TN to appear in the first place.  Unless an MRI and other more in depth scans/tests are done, it's a mystery why it's shown up and why it's unrelenting. 
The Gabapentin staves off most of the symptoms and accidentally helps with 'some' (as in 'not all') of the CPTSD mess. 
As to other responses on here: this situation of mine (CPTSD) has been in play for 45 years, -is untreated and unsupported. I'm pretty much winging it on my own and it's not going well on certain levels.  I'm very high functioning on some things and not on others.  As for 'dark stuff' material, only 3 people know about that level with me...because they're in similar 'states' of it themselves. I would never trust a well adjusted, mentally stable, healthy individual to learn a single thing about what I endure.  As for career (as I relayed in another post) is far from over, I'm in this for life.  -Accomplished too much, did too much...to ever 'put it down' and do something else. 
-Thanks to all for your replies.  I tried checking out some other forums and was referred to a couple PTSD related sites, but they wanted me to call them on a phone! LOL! -Like I would EVER just give out my cell phone # to complete strangers?!  :rofl:

Maybe that's a cunning strategy to see if you've actually got CPTSD? "Oh, I see you have entirely lost any trace of what I might call a pollyanna-ish trust in strangers. Google CPTSD and see what comes up. Good luck."

Thanks, I already did an extensive check on CPTSD (I do gov't analyst research work), -which is what led me to these forums.

Unconscious Ghost - you're experience with your c-ptsd is sadly one that is not unfamiliar I think to many of us. I was so relieved/happy to find the description of c-ptsd - having it all click into place as to why I hadn't fit into the traditional PTSD criteria - and then just as swiftly frustrated and full of anger about the fact that it's not considered a "real diagnosis" according to the DSM. Which means that even people who go looking to professionals for answers to these problems, we are largely on our own with this. I think because it goes "untreated and unsupported" for so long, many of us figure out ingenious ways to continue to function...until we just can't any more.

Kizzie recommended: 'One resource you might want to have a look at is Pete Walker's "13 Steps for Managing Emotional Flashbacks" which may be what you're experiencing.  It can be found here - http://www.pete-walker.com/flashbackManagement.htm. We also have a thread on self-soothing which may be helpful here at http://outofthefog.net/C-PTSD/forum/index.php?topic=106.0.'

Thanks Kizzie, but this TN & CPTSD mess isn't perpetuated by Emotional Flashbacks or helped by self-soothing tactics. I appreciate the recommendations though.  As you mentioned that certain 'dark stuff' material isn't permitted on these boards, I cannot describe or mention a large portion of what's occurring, therefore suggestions/links to me will wind up being 'guess-timations' to see if any of them would stick per se.  My closest 'cousins' and best friends are hardcore combat vets, we share very similar traits...the only difference between them & I is that they went through military combat and I did not.  So, their 'ghosts' are connected to war based trauma. Mine is connected to a lifetime of field disaster operations...with a layered base of my 1st 17 years being entirely a domestic violence setting (minus molestation).

Thanks for the reply.
As I have discussed/watched my combat pals (again, I'm not from military combat) with their PTSD related medical messes, medications, trials/tribulations, setbacks, counseling efforts/failures over the years...our conversations led me to wonder '*' was happening to me.  Which led me to start reading up on PTSD.  All the descriptions I read about PTSD didn't really 'fit.' That online research led me to CPTSD about 2 days ago after I suffered a massive setback which is still continuing (4 days now with panic attacks, etc).  The CPTSD description fit 100%, it was like reading a dossier on myself.  While checking out links, I ran across the link to these boards, so I'm on here 'giving' this a try for the first time.  I have not been diagnosed with CPTSD, I don't have a therapist, doctor or professional help/support due to not being able to afford insurance, -and not poor enough to qualify for it.  My presence on these boards is sort of a trial to see if there are others who have the same...or similar issues on hand. 

Spryte said: Unconscious Ghost - you're experience with your c-ptsd is sadly one that is not unfamiliar I think to many of us. I was so relieved/happy to find the description of c-ptsd - having it all click into place as to why I hadn't fit into the traditional PTSD criteria - and then just as swiftly frustrated and full of anger about the fact that it's not considered a "real diagnosis" according to the DSM. Which means that even people who go looking to professionals for answers to these problems, we are largely on our own with this. I think because it goes "untreated and unsupported" for so long, many of us figure out ingenious ways to continue to function...until we just can't any more.

Oh, I haven't found any ingenious ways to deal with this stuff. More like 'barely functioning' and occasionally failing extremely bad is a better fit.  I'm JUST starting to look into this CPTSD stuff (which was instigated by having a severe/extreme setback series of panic attacks that started 4 days ago and still continuing).  In the disaster response world and also combat military ops...the adrenaline extremes are exceptionally intense, to which you are racing on a very high level, and then you get the 'down-side' decompression afterwards.
Typically, the decompression period (which means your poor system is struggling to regain normalcy again) involves fatigue, exhaustion, and your system 'dumping' or sloughing off the stress ingested during the adrenaline 'high' period.  That period of time can be short or extended.  For me, the long disaster ops I did were typically 2-3 months of sustained adrenaline high...no days off, just cruising along at 300 MPH.  Then once back home, I'd easily sleep a week+ away with barely any recollection of how I got home, where the time went, etc.  I'd sleep 20 hours away like it was nothing.
But after living that lifestyle for a long time took it's toll.  Some of the nastier disaster ops post-decompression was taking 2-4 months to recover.  I had panic attacks that stretched for MONTHS sustained, and now those sneaky P-A's keep coming around, a year after I had fully stopped active disaster response work.  And with the sub-layer of my 1st 17 years ruined by domestic violence (no molestation occurred), ALL of that combined is greatly sabotaging my sanity & quality of life. 

Say Ghost, thank you on sharing more.   You do have a substantial amount coming up right now!

I hope the topics and posts help you find some of the answers you may be looking for, and solutions you may have for others.    :hug:

Rain, thanks for the feedback.  This CPTD occurring has been going on for 45 years.  It's not so much as a 'lot coming up right now'...this has CONSTANTLY been going on as long as I have been alive.  Been dragging this dark stuff around 24/7.  Since I don't discuss this with anyone except 3 close friends who are far worse off than myself...but trying to at least see (by writing on these forums) if others are suffering the same issues. 

Got cha', Ghost.

So many wonderfully unique people here!    :hug:

:Monsta:     :disappear:      :drinks:      :blowup:    :boogie:      :elephant:      :excited:      :fallingbricks:      :phoot:

Hey Ghost - the bottom line is somehow you have to take steps to reduce the stress in at least one area of your life, and as you say coming to this forum may help you learn more about CPTSD from past abuse and how to deal with it.  It's a step in the right direction and I hope it helps being here.

Does your work in Disaster Response entail working with one organization?  I would think perhaps the org have processes in place for helping responders to decompress and possibly get counselling when they are having difficulties.

Kizzie said: "Hey Ghost - the bottom line is somehow you have to take steps to reduce the stress in at least one area of your life, and as you say coming to this forum may help you learn more about CPTSD from past abuse and how to deal with it.  It's a step in the right direction and I hope it helps being here.
Does your work in Disaster Response entail working with one organization?  I would think perhaps the org have processes in place for helping responders to decompress and possibly get counselling when they are having difficulties."

Unless you are a full time employee with full benefits (or benefits at all), there are NO support mechanisms. No, I have worked for several disaster response orgs/agencies; none have support for those who volunteer or are hired only on a response basis (i.e. on call, no benefits, retirement, insurance).  The mass majority of people who respond to and help with disasters are NOT covered by any insurance, most are volunteers, contractors and on call personnel.  It's a very small majority who are active field disaster personnel who enjoy real benefits.
When I did a lot of online research that might be related to disaster response, all I found was PTSD support groups for combat vets, law enforcement and fire.  If I was a full time employee with the American Red Cross, Salvation Army or other disaster responder orgs, then you would have access to their mental health counseling.  Also, individual orgs only help their own personnel, they don't help others out except on active disasters.  In so called 'peace-time' there is nothing available, so you have to suck it up on your own. 

If you've ever watched the news and seen major disasters in the USA...Hurricane Sandy, Katrina, floods, etc...90% of all personnel are volunteers (Red Cross, Salvation Army, Southern Baptist folks) or quasi (hourly paid, no benefits) volunteers (contractors and FEMA personnel, some wildland fire crews, plus other on call entities).  So, there's hundreds of thousands of disaster responder personnel who have no access to counseling from the orgs/agencies they deploy under. 
Case history: one seasonal federal firefighter I know had been good friends with the Granite Mountain Hotshots who died last year in Arizona. He's a seasonal firefighter like most are, and they have no benefits.  So, I watch him...and others like him...struggle daily.

This is quite informative Ghost.  I know about the military (H just retired from the Cdn Army) and here in Can at least PTSD seems to be a lot of attention and support as are the police, EMT and firefighters (although I don't think CPTSD has had much if any attention yet. I did see it on the US Veteran's web site though).  Anyway, I am astonished to hear that DR's don't have much if any support, but if the work is mostly contractual/volunteer I guess that would be the case.   

Is there any kind of association for DR's that might take this (educating re the need for support for PTSD at least and possibly CPTSD in some cases) on as a project? I'm not sure what that would look like but there is often power in numbers and it sounds like it's needed.  And do you think a forum for DR's might be a useful idea?  I'm just noodling here, but that's the whole reason OOTS was started - nowhere online for us to go and talk about what we are dealing with.

Kizzie said: "This is quite informative Ghost.  I know about the military (H just retired from the Cdn Army) and here in Can at least PTSD seems to be a lot of attention and support as are the police, EMT and firefighters (although I don't think CPTSD has had much if any attention yet. I did see it on the US Veteran's web site though).  Anyway, I am astonished to hear that DR's don't have much if any support, but if the work is mostly contractual/volunteer I guess that would be the case.   
Is there any kind of association for DR's that might take this (educating re the need for support for PTSD at least and possibly CPTSD in some cases) on as a project? I'm not sure what that would look like but there is often power in numbers and it sounds like it's needed.  And do you think a forum for DR's might be a useful idea?  I'm just noodling here, but that's the whole reason OOTS was started - nowhere online for us to go and talk about what we are dealing with."

Congrats on your retirement!  Again, nothing is free when it comes to medical in the USA, and money is everything despite the need for a particular resource.  Most counseling is quite pricey 'out of pocket' (60-100+ per hour) and only paid staff for all disaster orgs/agencies I know of...are covered.  The irony is that the HUGE chunk of disaster personnel who deploy are volunteers, therefore, unless they have their own medical insurance which covers counseling, they are on their own.  Paid staff are the fraction of any disaster response oriented org/agency, and they typically don't goto the field.  The power in numbers is fractional...you have seasonal workers (wildland firefighters), on call disaster personnel, volunteers, and contractors.  VOADs: Voluntary Organizations Active in Disaster (Red Cross, Salvation Army, etc) have no counseling coverage for their thousands of volunteers.  As I said, every disaster heard of on USA soil is mostly comprised of volunteers/on call paid workers and contractors.  -None of which have ANY benefits!  :sadno:
On large scale (deadly, nasty, catastrophic disasters such as 9-11 or Katrina) incidents, the 'street' terminology is called 'loading up' or decompressing...i.e. your body/mind trying to rapidly dump the stress. 
I completely agree with you on ideas, etc, but again, it sources back to funding. SAMSHA: http://www.samhsa.gov/ is the only leaflet material floated around on disasters, again, it's just a piece of paper with links/resources and some written advice, but that doesn't cut it for those who keep going out.  On major disasters, the American Red Cross, bereavement chaplains, etc do make their rounds, but it's typically AFTER personnel get home or 'demobilize' when the decompress 'dump' process occurs.  And that timeline is the worst shadow time period.
This is identical to our wartime troops; they don't usually start decompressing in the field, its when they return home to family/friends and 'détente' that they begin processing imagery, memories, events.  And when they truck off to the V.A. for help and told to 'wait' (and our VA system in the States routinely let vets die), they begin to go insane without help, meds, or guidance.
Also, many so called disaster volunteers still have 'day jobs' or active careers, unlike the military.  I think it's tougher for disaster personnel to discuss their troubles with colleagues because they are still in the game.  NONE of my disaster friends know; only a rare few OUTSIDE of my circles do.  Honestly, if any of them were having problems, I'd never know either.

This all so defies logic, and tragic beyond belief.    The heroes on the front line not supported afterwards, and children trapped with abusers who are their parents, and siblings, without rescue.    :sadno:

I had a look at the site and saw the Disaster Response Kit which apparently "arms disaster recovery workers with a toolkit on mental health awareness. Includes materials for responding effectively to the general public during and after a disaster and in dealing with workplace stress. Also includes materials for the general public."  Pieces of paper as you say.

So I see that there's not much at all avail for the mental health of DR's themselves and what there is is mainly to help others. I understand that you and your colleagues are up against an enormous wall made more difficult by the voulntary nature of the work - so much harder too to be the "squeeky wheel" when you're not from one org.