Saturday, October 6, 2012

Namenda 7 days off

Some good news to report after having been totally off Namenda for about 7 days. I'm starting to have positive results. The last couple of days I've not felt as lethargic as I've been for years.  During the day there was always that feeling like someone was having a tug of war with my brain and pulling me down. I was constantly tired with waves of exhaustion and spent most days laying down in bed. It's almost a feeling like when your given medicine right before anesthesia for surgery and your brain has that sinking feeling as your counting down from 10. I'm still tired during the day, but less. I'm hoping this pattern continues. I'm not noticing any other side effects in memory or thunking :-)

All drugs have side effects and extreme tiredness is one of Namenda's. A few weeks ago I was thinking of taking the chemical route. Many people who have FTD were suggesting I take more medicines to give me a better life. Considering I used to be on up to 17 pills while being misdiagnosed, I wasn't looking forward to starting the whole chemical/drug dependency thing again. I also don't have a psychiatrist and can't afford one or the strict monitoring that comes with being an FTD patient taking a pharmaceutical cocktail. Never mind the cost of the drugs. The drug adderal (amphetamine) is a popular pick me up for day use in the FTD community. I am so tired of having dreary days because I'm dragging that I was seriously thinking this route. 

 Pills for FTD are all trial and error.  There's no pill or FDA approved medication for FTD so it comes down to lets try this anti-seizure pill and mix it with an anti-depressant and see what happens. Go back and see the psych next month for an evaluation and medication adjustment. Then it's how do we treat the side effects of these pills. By adding another pill, switch meds or downsize. Of course since FTD is uncooperative by being progressive and the brain keeps changing by shrinking, no combination ever works for long. As far as making a drug just for FTD, well FTD is rare so there's not much return on investment for a new drug being made. Easier to piggyback off other drugs for other diseases and use existing patients as guinea pigs.

Recents studies on Namenda which I wrote about in a previous blog concluded that Namenda is ineffective and rarely works. Now, the million dollar question was whether my extreme tiredness was due to FTD or Namenda?
If it was due to FTD then adderal or a similar drug would help me function better during the day. If my tiredness was a side effect of Namenda, then I would be taking adderal (speed) to combat a side effect of a seemingly useless drug. 


Am I being fair to Namenda? We all know our bodies and I really feel it has been doing nothing to help with my thinking and memory. Most, not all that I've heard from (close to 100 people) tend to agree it is a worthless for profit only drug that does nothing but have side effects and help the profits for Forrest Pharmaceutical. It might work for other conditions besides FTD, but it's been proven it's rarely effective for FTD. It's hard to believe and beyond my comprehension that a pharmaceutical might push a drug for profit only. Nah, who could be so greedy. (pharmaceutical companies :-))

Yesterday afternoon about 3pm I was up and walking around and ran into people that know me. Many were surprised to see me out in mid-afternoon. One person said to me after about 10 minutes she was shocked and happy to see me in an FTD rant. She knows my behavior patterns and told me I'm usually dragging anytime after 10-11am. 

Yes, that's what NYC needs. Howard Glick back to 18 hours a day of FTD rant. If I had a caregiver they probably sneak me doses of Namenda or Seroquel.

Anyway, it's Saturday morning and my energy level continues to improve and the Namenda induced lethargy is going away. Filmed about 30 minutes this morning for "Howard's Brain".


Howard Glick and eating crow.

If for any reason my conditions worsens or I see any negative change because I'm off Namenda, I will immediately blog about it. I have zero ego when it comes to saying I'm wrong and giving accurate details of the truth. 

At this point I'm one week off Namenda and there are only positives, no negative.

Howard

8 comments:

  1. great news! please keep us posted...

    I am all for medicating ourselves into some form of bliss but I don't see an upside to Namedna.

    I don't find Namenda on my list of ingredients of the toxic cocktail that was prescribed for me, but it may have been included and I just don't see it... or maybe it was furnished under another name.

    BTW: I have finally decided to not bother with getting yet another atty. to attack Kaiser in an attempt at getting my medical records. Why bother? It is what it is, and I don't believe they would give me the records without "editing" them anyway.

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  2. Howard,
    GREAT NEWS! I am very happy for you. I truly am:O) You sound good. Your posting is upbeat and detailed. I like details... so helpful. Again, with prescribed drugs if it's good for one person that doens't mean it's good for another. Yes, doctors at times prescribe too many drugs as easy way for people. Sometimes people want the easy way out. No self decipline. Example with dieting. Just sprinkle on your food or take this pill to loose weight. How about going for a walk, cut back on food intake and eating healthier. Sorry to rant, back to you. I guess what I am trying to say is you sound good and your not taking all those drugs. You did it on your own. Now since your not so tired it's time to tackle laundry and your kitchen. Have a good one Howard:O) Your amazing!

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    2. Hey Anonymous,
      Thank you so much for your enthusiasm. Yes, where I'm winning this battle with prescription drugs, it's a massive war against FTD. Many people I know that have FTD have incredible discipline, but the invisible insidious enemy cuts much of you out. I'm still very tired right now at 1:21pm hoping for my second wind. It's not the same as the extreme tiredness caused by the Namenda, yet it's FTD. I do need and will be getting help with my apartment. I'm doing what I can and much of it is mindset and attitude, but there is also the reality of FTD that does zap the you that makes you, you. Still, your right that you have to keep fighting on as much as possible. For me, getting this blog, filming Howard's Brain, and contributing to the support groups maxes me out. I'm trying to continue the book and the other things you listed, but reality sets in and I do what I can. Thanks again for your nice comments and enthusiasm.

      Howard

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  3. Howard,
    I completely agree with how useless Namemda is. I am on Adderall and it is no magic pill. I started off on a low dose but have had to continually increase the dosage for the effect of being alert during the day. It is so powerful that I can take it and a nap at the same time. Think it's time to give up on it. I have also been on Nuvigil and it wasn't any better.
    I sometimes think they do not know what they are doing with these drugs. I was recently on a medication which had a side effect of stopping nightmares - it actually worked - but after the cardiologist did a tilt table test he immediately took me off of it because it was bottoming out my blood pressure when I would stand up, to the point that I passed out once.
    I think my new cocktail should be a margarita, at least I know what I am getting.
    It's great to hear you sounding so much better. You have had one hell of a month and came through it the old Howard we know and love.

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    1. Good to hear from you Janet. Pills for FTD are all trial and error. There's nothing made for FTD so it comes down to lets try this anti-seizure pill and mix it with an anti-depressant and see what happens. Go back and see the psych next month for an evaluation and medication adjustment. Then it's so we treat the side effects of the pills by adding another pill, switch meds or downsize. Of course since FTD is progressive and the brain keeps changing by shrinking, no combination ever works for long.

      Glad you sound well Janet.
      Howard

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  4. Howard,
    Can the doctors tell how quickly the brain shrinks? Does the medicine you have taken help stop the progression of that? I guess the only way you would know if they take another scan of your brain. When I go back with my husband for his follow up visit at the University I am going to ask which part of sides of his brain are affected. I also wonder if the weather has a play on your mood? I can't wait to hear your update from your Psch Doctor visit. Have a good one:O)Again, glad your back.

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    1. You can tell how much shrinkage there is through PET scans.
      There is no medicine to stop the progression of FTD.
      I see my neurologist once a year and we no longer do tests. FTD is untreatable, unstoppable and incurable. I'm just trying to live life.
      I haven't seen a Psychiatrist since I was diagnosed with FTD over 2 years ago and I have no plans to see one.

      Best of luck with your Husband. Stay strong.
      Howard

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