Because Veterans Are Worth It

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June 8, 2015 | 7 Comments

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  1. 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?

  2. 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’

    • 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!

  3. 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…

  4. 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???

  5. 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.

  6. 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.

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