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November 4, 2007, 5:16 am PST
How Childhood Abuse Still Affects Me
Quote From: pneshelpWe are certain that if we do not find help for my son-in-law NOW, we will be attending his funeral before the end of 2007.
First, you need to know that he has not, as long as we have known him, appeared depressed, suicidal or anything like that outside of normal daily ups and downs. He has had a very traumatic life ( details excluded) but outwardly has been a happy people pleaser who everyone in the family just adores.
Apparently the trauma from his past finally could be suppressed no longer and
nearly 4 months ago my happy, caring, hardworking son-in-law had, out of the blue, had a severe 'anxiety attack'. Many emergency room and doctor visits later, we have a diagnosis of PNES (psychogenic non-epileptic seizures).
The reason I am writing is because after only 4 months of dealing with this disorder, it appears that the diagnosis is nothing more than the start of a countdown to suicide. We have encountered a string of doctors, nurse practitioners, psychiatrists, psychologists and neurologists who appear to have no real clue how to treat him and have opted for prescribing a slew of drugs, increasing and decreasing doses and changing drugs, all of which are causing more problems than they are solving.
I have called every epilepsy center and psychiatric hospital I can find in their area looking for help but have been told they just don't know anything about the disorder.
When I was looking for a support group I was told by doctors that there are none. After reading about the disorder and learning that aggressive counseling could be key in recovery I questioned the delay in his counseling sessions. I was told that their state was 49th in the country in terms of mental health funding, and if he was seeing a therapist more than once every six weeks he was one of the lucky ones.
Meanwhile, he has become, most days, pretty much non-functional. He has seizures 2, 3, 4, 5 or more times a day depending on the day. He has lost 30+ pounds and can't sleep. He has tried to go back to work but the attacks make it impossible, His job (and his insurance if he loses his job) and everything he has worked for are slipping away. His wife has used all of her sick days to care for him but is out and has to be at work to keep her job and keep them afloat. I am thousands of miles away and because of a physical issue cannot travel there to care for him, so for weeks I have called him dozens of times a day to try and help him through seizures and anxiety, but there is only so much I can do or say over the phone.
During attacks he thrashes uncontrollably, cannot speak, moans and cries. It is terrifying for him, and he remembers all of it. He feels very alone.
The reason for this message is because I truly believe that from what I have learned from this experience, there is little help and even less hope for anyone diagnosed with this disorder. I have searched and called and emailed and begged and pleaded for help...to no avail. The best ( I believe) help I can find is thousands of miles away from him in Rhode Island with Dr. Curt LaFrance at Brown University, who is willing to help but my son-in-law could barely get out the front door, much less make a flight like that. In addition, he could not go alone and his wife could not leave work for the 12 weeks of treatment the study would take.
And so now he has come to a crossroads and is contemplating quitting. This past week he planned his suicide. He had the presence of mind to call his NP, who changed his med dosage and told him if he had any more thoughts to be sure and call her. She never called his wife or myself, we only found out when he told her later. From there he has gone down hill at an alarming rate, with more thoughts of suicide, even fighting off the urge to turn the wheel of his car as he struggled to make it the few minutes drive to his job into a concrete barrier. We feel very strongly this is due to the massive quantities of multiple drugs (Lamictal, Effexor, Xanax, Topomax, Kalonapin, Zoloft, Ambien...plus blood pressure meds and a few others...).
Because he was home alone and in real distress and experiencing suicidal thoughts we decided he needed to be admitted somewhere, but he did not want to be dumped in some psych ward at the city hospital (who can blame him) having already experienced a night there early on in his ordeal. So, we searched and searched and found that there very few options. The one place we felt may be suitable is where we finally got him admitted.
So, why am I still looking for help? Because they don't seem to know what to do with him either. He started off in the high functioning psych wing and after 2 days he was sent into another anxiety attack when it was decided he did not belong there but rather belonged in the trauma ward. The problem there is that it is all female with the exception if himself and one other guy. In addition, there is no bed for him there so he rooms in the psych wing and travels to the other, which is very uncomfortable because it is far away and if he is experiencing anxiety he can't get to his room.
This whole disorder and everyone effected with it has just fallen through the cracks. It is not quite anxiety, not quite epilepsy, not quite a psychiatric case. Nearly every doctor/psychologist /psychiatrist I have spoken has said PNE-what???
The few studies and statistics I can find concerning PNES paint a grim picture of years with no recovery, loss of job, marriage, family...hope.
As a psychologist I Dr. Phil would understand how frightening this must be for those floating aimlessly in a drug induced fog with no sign of a life preserver on the horizon. This is a looming fate for those who suffer trauma as a child just waiting to come crashing down on them at some point in their adult lives.
This disorder needs a voice, a loud one, that can help those now caught in it's grasp and maybe even more importantly those who inevitably will be. There is no net in place and I am hoping Dr. Phil will help us set one up before we lose my son-on-law and others lose those their loved ones due to ignorance.
I am beyond frustrated with the system in their state when it comes to this. I know they have some amazing resources for so many things, including a leading epilepsy center, but they need to expand upon their existing programs to include this disorder, as it is often misdiagnosed and treated as epilepsy for years before a proper diagnosis is made.
This disorder needs an advocate and I believe that advocate should be Dr. Phil. He knows what so many kids go through at the hands of abusers and people need to be informed that without a program in place they will be victimized again by an inadequate healthcare system.
This morning my son-in-law woke up thinking about how he wanted to die. That is unacceptable.
I would be trying to get him weaned off all of those medications I think they are inducing the symptoms you describe. (With help from a doctor).People believe in the 'theory' that psychaitrists state that depression is only a biochemical imbalance. It is not a scientifically proven fact. You cannot measure the levels of neurotransmitters in the brain especially not serotonin.
The biggest problem with believing this theory is that one automatically believes increasing serotonin +/- noradrenaline will correct the imbalance and 'hey presto' the person is not depressed any more. The danger lies in the fact that if you increase the level of serotonin in the brain of a person with adequate serotonin then you induce symptoms such as suicidal thinking and behaviour. I know because it happened to me. Don't believe that it's only a matter of finding the'right drug' because it isn't. If a person is affected by psychotropic drugs (SSRIs) in particular ,medication will worsen the problem. I imagine was he never extensive physical examination prior to commencing on all of these drugs ? Almost every person given these drugs is given no physical investigation.This means physical conditions become masked in the myriad of side effects caused by the cocktail of meds he is on.
I believe that he needs close supervision; to be weaned off all meds; psychological intervention for the PTSD and depression he is suffering and proper physical investigation . Medication has no beneficial effects on PTSD you have to work through it. Ask any Vietnam veteran how much medication helped them !You cannot gain any information from an individual who is so obviously overmedicated. It would be like an ER doctor trying to do an physical examination on patient who has been given a narcotic. Obviously they could not say where it hurt anymore because it wouldn't be hurting while the drug was in effect.
Zoloft has long been associated with producing suicidal ideation in countless individuals.Everybody's brain chemistry is different. It is Russion roulette as to whether the medications help or harm you and psychiatrists won't admit that a drug is harming their patient they just adjust the dose , change meds altogether and then if still failing administer disgusting ECT. It is an area of medicine which is extremely poorly researched or regulated. Virtually no psychiatrist will consider taking their patient off medication regardless of what physical harm it is doing. Just look at the number of people who have developed type I diabetes from Zyprexa and hypertension from SSRIs & SNRIs. Not even then will they discontinue the drugs."Gee, they might die from this but at least they might have good mental health !"
Look up David Healy's " Halting SSRIs" for further information. Good luck this will be difficult and take time. I am fully expecting a backlash of replies from those people who avidly believe in trying medication after medication until the day they suicide.I've unfortunately watched that happen to many , many people. I only survived because I got off the meds and worked through my PTSD and depressive issues.
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