Editorial Note from Johanna Ryan: Cesar Ruvalcaba is a veteran of the U.S. Army, 10th Mountain Division, and served in Somalia in the early 1990’s. He’s now a dedicated antiwar activist and a member of Vietnam Veterans Against War (VVAW). He told this story May 25 at a Memorial Day rally in Chicago organized by antiwar veterans.
As Cesar indicated, many Iraq-era veterans have suffered from “overmedication” by Veterans Administration doctors. Heavy use of antipsychotics and tranquilizers for PTSD and other emotional problems, and opioid painkillers like Vicodin and Oxycontin for physical pain, have been the biggest problems. A report by Iraq Veterans Against War offers valuable testimony from vets and soldiers at Fort Hood, Texas.
Cesar’s experience shows us another side of the overmedication plague: Not only can patients suffer direct harm from side effects, but over-reliance on medication may blunt the doctors’ ability to find the cause of the symptoms. Just as VA doctors failed to identify the source of his seizures, reliance on drugs to manage veterans’ emotional distress or physical pain can interfere with getting to the root of their problems.
“The life of a veteran is worth a lot more”
I recently read an article from the Army Times that talked about over-medication and the lack of accountability from the V.A. and its doctors across the country. There is a lack of responsibility towards the health of our veterans and that pisses me off. I am a member of VVAW (Vietnam Vets Against War) and was shocked to read that nothing has changed in over 40 years. Veterans have been dying trying to get adequate healthcare after coming home from serving our country.
I have read of doctors over-prescribing medications to mask symptoms instead of treating the illnesses. That was my problem. I suffer from epilepsy and am 100% disabled. It has taken 21 years through the VA to treat the source of the seizures. On June 1, I will have a right anterior temporal lobectomy—brain surgery. They will remove a piece from the middle of the right side of my brain. It was detected not by the VA but by Rush University Hospital.
The treatment I received through the VA was numerous medications and dosages. Medications that made me gain 40 pounds, lose 40 pounds (and I’m not a large man), debilitated me to the point where I could not get out of bed. Medications that at various times gave me migraines, irritability, depression and insomnia.
It wasn’t until President Obama’s overhaul of the VA and allowing veterans to be referred outside the VA for treatment that I demanded of the VA neurologist to be referred to Rush. The neurologists had no idea of the cause of my epilepsy so they agreed to send me to Rush, just a block away from Jesse Brown VA Hospital. They took a deep scan MRI at Rush and within fifteen minutes detected the problem. I had scarring in the right front temporal lobe that needed to be removed. The neurologist was shocked that the VA had not detected this in 21 years of MRI’s. And why not? Because the VA does not have an MRI machine that is powerful enough to detect the scarring.
Keppra rage & other problems
My illness was only being masked by medications through the VA. Keppra (levetiracetam) was one of those medications, and they took me off it at Rush because the neurologist said it was doing me more harm than good. She said that Keppra was an antiquated treatment for epilepsy. The VA had me on this medication for the past five years. There are newer, better medications for epilepsy with a lot less side effects, it seems.
She also said that if I did not have the surgery, I had a 20% chance of being seizure-free with medication, as opposed to 60% with the surgery. She also said that if I just stayed on the medications, as I got older it might spread to my left front lobe and affect my motor skills and my speech. This is the outcome the VA was offering me. I have decided to have the surgery. If we as veterans don’t fight for adequate healthcare, I would not be getting this critical surgery. As I got older I could be stuck in a wheelchair while my wife feeds me.
If I need medication that is newer and more effective, like the one that Rush prescribed me to replace the Keppra, the doctor from Rush needs to convince the neurologist from the VA to prescribe it. The VA knows it works, but they don’t want to pay for it. There’s a medication that I need right now that costs $1,200 a month. I should be getting it from the VA for free but I’m not. Instead, veterans get the cheaper alternative and just give you more when it doesn’t work. It’s obvious that medication is cheaper than the surgery, which will cost $250,000 not including post-op care.
Did your treatment work?
I have seen surveys where they ask how long you had to wait for your appointment. I am still waiting for the survey that asks: How good was your treatment, and was it effective in treating what ails you? That’s what’s really important. If not, then why are you seeing the same doctor for years and you’re still having the same problems, or end up dying?
I have had friends from VVAW who are veterans who have passed away. We remember them today, and take on their struggle to make sure that the VA will give us what every veteran has earned: Adequate healthcare that does not overmedicate us because that is the cheapest thing to do. The life of a veteran is worth a lot more.
NOTE: The epilepsy drug Cesar was given at the VA – Keppra (levetiracetam) – is well known for emotional side effects especially irritability and outbursts of anger. When it was new, doctors were told that this problem was rare, affecting less than 8% of clinical trial subjects. Patient experience has shown it is far more common, and “Keppra rage” has become a major topic in online patient forums. In spite of this, Keppra and other anti-convulsant drugs like Depakote, Topamax and Neurontin are now prescribed for mood and anxiety problems, from bipolar disorder to PTSD, more often than for epilepsy.
Johanna says
Just wanted to share some of the comments about Keppra and “Keppra rage” on a patient/consumer website called EpilepsyTalk. Reactions ranged from Terrific, to truly Horrific:
“Keppra has saved my life, literally! If you’re not on Keppra, I’d talk to your doc. Ever since I’ve been on Keppra, I’ve had a 96% seizure reduction rate.”
“I have experienced very, very few partial seizures. I have been taking Keppra since two and a half years now without skipping even one day. I have not had even one ‘confirmed’ seizure since I have been on Keppra and I cannot begin to tell you how very happy I am.”
“Using Keppra has even helped me to get out of the deep sense of gloominess and uneasiness that I had felt when I was on Depakote all those years.”
“This medication was given to my husband and he had a severe hostile reaction to it. He wound up in jail for family violence. I would recommend a thorough review of all medications and interactions with medications before taking it.”
“I was put on Keppra and it almost killed me. I started getting terribly despondent as soon as I started the drug and I reached a stage where I was crying uncontrollably all the time … I became so terribly depressed that I lost 15 pounds and turned into a complete nervous wreck. I tried to commit suicide twice and was somehow saved in time.”
“Keppra helped with seizure activity, but the personality changes, anger, hostility, irrational judgments, were worse than the seizures. It has been a living hell. I am the mother and it has been a heart crushing, emotionally draining experience.”
These are such complex drugs, and people respond to them so individually … yet they are being dispensed very casually as painkillers, “mood stabilizers” and for any symptom that seems “nerve-related.” I was offered Neurontin to offset the numbness and tingling in my legs caused by another drug — an annoying side effect that made me feel fatigued, but not exactly crippling.
I wonder how many people have been mistakenly diagnosed as bipolar, psychotic, etc. because no one realized the problem was their medication?
annie says
As David has repeatedly opined; this has gone on for so long that any psychiatrist or doctor should by now be well aware of medication side-effects, drug interactions and so on, and, you have to wonder at their tunnel vision.
When everyone else can see it, except the doctors, you really do have to wonder what sort of species these people are. Doctors, may be is the correct title – doctoring the responses.
Is there really any excuse for not knowing any thing and some of them even learning their job from magazines such as The BMJ or The Lancet which we have all discovered give highly questionable and vacillating information.
Johanna, you are to be applauded…….
If nobody speaks up then nothing will ever change………..
There is far too much at stake to just accept the doctors decision is final.
It’s not really the ones who are happy with their meds we need to listen to
It’s when the chorus from the bad side overtakes the chorus from the good side that may be some doctor somewhere will say ‘oh, oh’
Johanna says
That’s the weird thing, Annie … People with epilepsy and people diagnosed with psych disorders (accurately or not) are often taking the same drugs. Yet while the psychiatrists deny any of it could be drug-related, often the neurologists freely admit it!
Have a look at DG’s Abilify story last month — his neurologist didn’t try to deny the awful side effects he reported. Instead she said “Oh, that’s just your brain getting used to the meds” (!) I’ve heard the same from other people with epilepsy, Parkinson’s or MS. Some of these doctors seem to feel they’ve been hired to fight the disease, and if the person becomes collateral damage in the process that’s OK. As Rumsfeld would have put it, you go to war with the drugs you have, not the ones you want. (Others take a much more decent attitude; some Parkinson’s doctors really seem to “get” the high price patients can pay for taking the meds they’re offered, and will work with them to at least switch drugs…)
Heaven help the drug companies and their Key Opinion Leaders if we ever start talking to each other!
annie says
https://www.facebook.com/FiddamanBlog?fref=ts
Ha ha agree with you there, Johanna.
Talking about our international relationships with the people who matter, and, as far as I am concerned anybody who puts the work in is my friend; bold Bob, has the nose of a terrier and if you have a little spare time this weekend, buy yourself a little treat which Bob has advertised….nice gifts…perhaps they would engrave your name on one of your choice for an extra fee, of course…I don’t like the name Paxil; its not edgy…..monogrammed towels are all the rage….
As, I said, before, there are no secrets on the internet……..I so look forward to being hacked…I have no secrets…Seroxat was dished out willy nilly and it is only fair that we can talk about it as much as we want to.
The world is getting smaller and there are only now a few key players which makes it much easier to understand for newbies jumping in to the odd blog….1BOM has made it to the pages of BMJ, and what started as coffee-stained few thoughts has made him famous, in his world, of course…….congrats to !BOM, although Fiona could also develop friendships with people outwith her circle…and so it all goes round and round and round.
The Mothership is watching our every movement………………..which is why I put the red bit at the top……….
To friendship…
jay says
Some May not agree with my opinion on this but we can agree to disagree. Right?? First of all I’m Amazed that Obama finally did something right for these vets. To be fair to the Dr’s I have to say that if Patient’s were not getting medication, particularly pain management, as is now the common practice For GP’s because Addicts ruin it for people who have legit problems /Pain. If Vets were not being treated it would certainly come off as Their UNDER medicating. Both of which are a problem and has to involve the patient. I hear so many bad things about VA Dr’s That I wonder if they are Dr’s who graduated last in Med School and barely passed their boards. I said to myself although joking that wouldn’t it be something if these Doc’s took the place of the general practitioners in the private sector?? Would it be a disaster??? Being a nurse I hear all the time perhaps with the same frequency people and Pt’s stating the Doc. gives too much medicine and that the Doc Doesn’t give enough medication. People who state they are given to much medication do have the choice not to take the medication or perhaps a small dose of it. This implies knowledge though on the part of the patient that he/she knows how to adjust the medication. We know of people out there that when given medication at a certain dose they cut it in half or don’t take it all. Comments on Abilify in these forums confirms that. But The people know first hand that Abilify is dangerous. Some times I’m given a prescription for a medication that never makes it to the pharmacy but makes it to the trash. Even when patients say they did well on a medication that was DC’d GP’s, Because you suggested it and not them purposefully because of their inflated Ego give you something else. Why are GP’s Treating this Vet’s epilepsy??? Keppra is old and has some nasty side effects too, like anger and violence. Vets don’t need that. I do feel that it’s better to go with the side of caution and perhaps give too much then not enough. With pain meds, benzo’s, barbiturates we can always take those PRN even when the Doc says Take it 3 times a day. The anticonvulsants, BP meds etc are another story. I myself being 43 and having major depression since 16 always felt under medicated either the med didn’t work or it did but I had residual symptoms like anxiety, insomnia that wasn’t being treated. Just recently I fortunately broke away from my Shrink of 14 years and am seeing a shrink who took me off of the previous meds and put me on a couple meds different from the previous. For the past year I suddenly feel like a human, not sleeping 14 hours a day, having no interest in music, sex etc. Had I been on these meds from the get go I really feel my marriage would have been saved too. So i’m for giving many meds and sorting out which is good and not so good for me. It seems too that if you tell you’r Doc that you don’t want to be on a certain med they look at you as if you just insulted them. Stockholm syndrome that Dr. Healy talks about. Agree or Disagree???
Nikki Veteran Advocate says
Hi all. Please consider taking Magnesium L-Threonate (MLT) for PTSD and then gradually and only with your doctor’s guidance wean yourself off of the anxiety meds. I have seen amazing results with twice daily doses of 2,042mg (1 capsule of “Magtein” but there are other brands which are about the same amount). This new form, Magnesium combined with the amino acid L-threonate allows the magnesium to penetrate the brain. I experienced a feeling of “all is well” for the first time in years after being on the supplement for about one month. I read a study that shows how this form of magnesium decreased fear behaviors in rats while not erasing the memory of the fear-inducing experience. Here is a link: http://www.jneurosci.org/content/31/42/14871.full I am not suggesting this is the only form of magnesium that will work, but I have been on many and it seems the best for me and it doesn’t seem to cause bowel upset as others can. I still take 200mg magnesium citrate at night along with one 2,042mg capsule of the MLT because combined there is a body relaxing effect which is almost sedating. I don’t feel drugged or sleepy during the day, just more calm, rational, decisive, and happy. I haven’t had great memory improvement which is an effect it’s creators tout, but I do hope eventually that effect will come on. I am better able to concentrate and I actually understood the journal of neuroscience article which shows a nice increase in ability to focus and comprehend new material. I would love to know if others have tried other forms of magnesium and had these same wonderful results.
Thank you all for your service.
PS Beware the fiduciary program. The VA will try to deem you “incompetent for VA purposes” if you have any issues coping with day to day and show even the slightest need for help with managing finances. Even if you don’t “need” help but your spouse or a family member helps you out, or you get behind on bills because you had money issues, the VA may deem you incompetent. Do a web search for VA Frauduciary Program and educate yourself. Protect yourself and your fellow vets. We need more attorneys who are familiar with this system. Please share on message boards if you find a good attorney to help you.
Nikki Veteran Advocate says
I forgot to mention that my dad has stopped taking all of the VA prescribed Rx drugs (zoloft, statin, atenolol, finasteride) and is much healthier. He was an angry, anxious, depressed mess. He still has anxiety but it is managed with positive support from family and caregivers who actually care about him. He is still apt to be out of control in a hospital setting where generally speaking only half of the staff is genuinely caring, while the other half seems interested in murdering any needy/expensive patient. During his last hospital stay, he had some moderate “paranoia” (more like the ability to pick up on the fact that the VA wants him dead). That time had a known caregiver with him 24/7 and I was sure to bring his magnesium to him there. He had no violent outbursts and though he was stressed and getting a bit worse each day, he was much better on day 5 than he would normally have been on day 2 or 3. It’s amazing what a support system and/or a little mineral supplement will do for someone who suffers with PTSD. He has been taking magnesium 3x day (must be done with caution as it can cause loose stools). He still has nightmares and anxiety but the intensity is less and he calms down so much more quickly (when someone comforts him). I hope his story helps some of the readers here.