Monday, October 1, 2012

Off Namenda and FTD Drug FREE

I've decided to become a medical Guinea Pig. Seems to me that nobody but the pharmaceutical company (Forrest) really knows if the drug Namenda works for FTD. It's a drug that was made for Alzheimer's that they say works for FTD. It has not been proven The major side effect of it is extreme tiredness which I suffer from. I've been taking Namenda for 18 months twice a day. I have no idea if it works. Most seem to say that they have no idea if it's working, but there there are no ill effects except harm to there wallets. That's pretty much where I'm at. Last week I received a letter that my extra help for pharmaceuticals under Medicare is being cut. I'll add that to the stack of denial letters I have. AFTD did let me know a few months ago that Forest Pharmaceutical has a program for free Namenda for those without limited resources. I applied and of course was denied. Another for the "denial folder". 

Coincidently there was a Namenda study released at the IAFTD conference in Manchester, England a couple of weeks ago. I will copy over the message relating to this announcement from Sharon Denny, program director of AFTD.

A multi-site clinical study of Memantine/Namenda use in bvFTD and semantic PPA that took place over the past few years is complete and the data analyzed. It's not published yet, but was the topic of a presentation at the Manchester conference. The study design could only detect large effects, and concluded "there was no benefit of Memantine/Namenda treatment in bvFTD of semantic PPA". That's not to say there aren't individuals who do experience benefit. Like all med/treatment questions there's variability from person to person. AND you should always coordinate med changes with your doctor; he/she will only be able to help over time if it's a partnership. 

For those that aren't that familiar to FTD, there are no medicines made to treat FTD. FTD is untreatable, unstoppable and incurable. Drugs for other illnesses are used in trial and error to combat the symptoms  for those suffering with FTD. If a person is under strict psychiatric monitoring, they have a better chance at being successful with the constant changes that are necessary as the brain changes.

Unfortunately, many psychiatrists have become just dispensers for pharmaceutical companies and society has come to believe there is a magic pill for everything. Instead of combining behavioral techniques with medications, they just throw drugs at you. Most times patients leave the docs office unaware of side effects. 

I was on up to 17 pills a day while I was misdiagnosed as bipolar. They had me on the harshest antipsychotics, anti-anxiety, antidepressants, sleep aids and others. They weened me off all of them over a 6 week period in the hospital psych ward. No one ever told me getting off some of then would be tougher than getting off Heroin. I was delusional, having hallucinations and all the sufferings some have getting off of pills after years of getting my body abused. Do I blame my doctors? No, FTD was and is a rare disease. Part of my fight now is to try and spread awareness  so people don't go through what I went through.

So do I take any med now because a doctor prescribes it. Hell no. Sorry, docs are no longer in God status in my book. Yes, I trust my neurologist Dr. Bell from Columbia implicitly. She knows I've been through the medication circus. What does my Psychiatrist think of me being drug free? I don't know because I fired him for incompetence. He is one of may shrinks that turned me into a drug addict. I went back to see him after a year of being off all meds for a year. He made sure my VNS (Vagus Nerve Stimulator) in my chest was off. I spoke, he listened about my FTD diagnosis. He never heard of FTD, but was glad I was doing well. Guess he hasn't kept up with his studies or missed that class at John's Hopkins.

FTD/dementia is extremely difficult to treat with drugs. Chemical and structural changes slowly destroy the brain. It is difficult to administer drugs to a constantly changing condition. It's the difference between shooting an arrow at a stationary target or trying to shoot an arrow at a rabbit that's constantly changing direction and speed. Pharmacutical options can often be somewhat effective but side effects can be equally disturbing. Drugs will pacify your mind into living an illusion that may or may not work for you. People with FTD experience a mindset that like that of a running rabbit, it's constantly changing direction and hard to pin down with a single drug. However, it's possible to incorporate subtle changes to routines and activities to keep depression and behavioral at bay, much more effectively than with drugs. Of course this is my opinion. Others swear that with the right chemicals and strict monitoring from psychiatrists, your FTD life can be much better. Do I disagree. No, to each there own.  I can't afford Psychiatrists or the meds so I don't even have to think about it. 

Many are doing well with drugs and of course there needed in times when the FTD patient might be aggressive and danger to others or themselves. Yes, there are times I feel it would be easier to be on drugs, but I've seen that movie before and am not interested in a rerun. I know plenty of FTD patients who take absolutely nothing like me except vitamins and supplements and are doing fine.

Okay, besides my heart meds I'm on Namenda for FTD to help with a abnormal activity in the brain and help people think clearly. Namenda, which I take twice a day and have been frequently forgetting at night without any repercussions. I checked on the web to make sure there are no ill effects. Withdrawal, uncontrollable giggling, making me a nice guy etc.

After cutting back to a half dose for three days I went totally off. I was scared I was going to grow 6th finger. Where would I find 6 finger gloves.

I stopped taking Namenda/Memantine 5 days ago and have noticed absolutely no difference. 

Of course I still take my vitamins, supplements and my weekly rations of red wine.

I was hoping the extreme tiredness/exhaustion I suffer would go away, but so far no. I'm still secretly hoping it's a Namenda side effect and not a FTD thing.

My neurologist is in the loop to me taking myself off Namenda and I highly recommend that any patients that are making any changes with there medicines, coordinate with there doctors.



  1. Replies
    1. That's great. Whatever helps I'm gung ho for.


  2. Howard,
    My husband has been taking Namenda since June 2012. I find it has helped him with his memory. I was told it should also help with his agitation/out bursts. The doctor slowly increased the ml of Namenda prescription. Also, the doctor has introduced two other drugs slowly. Meaning we go and see him once a month. The University senior neurologist disagrees with my husband taking these medications now properly diagnosed with FTD bv and for how long he has had this disease. I am happy with my husbands behavior... esp. temperment. I understand in the future these medications will not help due to the disease but for now they are. I thank you for keeping everyone updated on you. I am amazed by your writings and how much you do. As always move forward and don't look back.

    1. I'm glad Namenda and other meds are helping your husband. Anything that helps anyone with FTD is a good thing.


  3. Howard, My husband was on Namenda for awhile and we noticed it actually decreased his short term memory. Since then that neurologist and another we now work with have stopped prescribing Namenda for their FTD patients. I have heard of other neurologists doing the same. I think your decision makes sense. The only med Jim is on for his FTD is Zoloft to help with anxiety which seems to help - he used to wake at 4 am anxious he had to do something but unsure what. He also gets less anxious during the day.

    Take Care

  4. (About 1 year) -- I want Namenda? - my brain better or not? So off my pills. One week - no difference. My brain... down... down. So about 15 days again I on pills. I know now... better Namenda me. So Howard says no difference one week. I want to see the 2 weeks?

    1. I fully intend to keep everyone updated on how I'm doing off Namenda.

  5. Howard,
    Just checking in to see how you are doing?
    Want to make sure your doing well?
    Have a good one :O)


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