Welcome to our blog! I originally started this blog in November 2010 just prior to having a major brain surgery to remove a large bleeding cavernous angioma from a deep part of my brain. You can best understand the gravity of our experience by reading the first several entries.(Nov 2010-Dec 2010) I wrote the first one and my sweet, adoring husband, John, wrote the next several (while I was too sick to do much of anything) that documented surgery, immediate recovery, and our reaction to the surgery complication (stroke)that was revealed 2 days after surgery. This recovery process has been difficult but we are making it. We appreciate all the kind words of encouragement we have received and we would like to thank everyone that has participated in helping us along this difficult journey. Also, if you have any questions about my personal experience, please leave them as a comment or contact me directly at thankfulforeveryday@yahoo.com and I will respond although I am not a doctor and this is not a replacement for medical care or advise. Please ask a real professional, or probably several. :) I hope to be able to help at least one person along the challenging road of brain surgery and recovery.

Friday, June 1, 2012

No "wonder drug" and April updates

Of course, we all know there is no such thing as a wonder drug...but I was foolishly hoping there might be something out there to help me with this dreaded fatigue. Back in November the neuro-psychologists that I saw said I would be a good candidate for fatigue medication. I was skeptical because I HATE taking medication, so it was a complete stretch that this could be a part of my solution. I am super sensitive and usually react negatively to medications, but after reading the side effects for the first purposed fatigue medication, Amantadine,...I thought the possible listed side effects didn't seem so terrible and it was worth a try. My fatigue is so terrible that I am willing to give almost anything a try.
This past month seemed like a good time to try to tackle my remaining deficits and hope for the best. My plan was to see a few new neurologists...hoping one might be a match to work with me on my remaining issues. It turned out to be a complete disaster. The doctors were not good and the medication...oh....YUCK!! The first neurologist was actually very smart...I think...but hardly gave me any time and he just wasn't my type. He said some of my complaints were permanent, which I never want to hear, and don't agree with either. How does he know that my leg/foot muscles will never get better and my left shoe will always fall off? I don't agree and I don't want to work with a doctor like that. He also prescribed the first medication. He said there were 3 that are used commonly for post stoke fatigue, and that if the first didn't work, we could move onto the others. He suggested that I start one a tiny dose(50mg) of Amantadine and work up to a full dose(200mg) in a month's time. He said the primary side effects are GI related and are normally only seen when taking large(greater than 200mg/day) doses. I went home and looked it up right away. It's actually an old anti-viral drug that some people noticed the side effect of fatigue relief. I read several positive testimonials, and hoped this could work like magic for me. I was hoping that at the least I might get some placebo effects because I wanted it to work so badly.I took 50mg once a day for 2 days and I thought I was going to die. It was horrible. My heart was racing/pounding, anxiety like crazy, neck and shoulder pain (tension type pain),zero patience, terrible insomnia. I was still exhausted but I felt so uptight I couldn't sleep. There was nothing to be stressed out about and since I've had surgery, I am always super calm...it was obviously the drug, although nothing that I experienced was listed as a possible side effect. I felt horrible, and decided even though I was only 2 days in, I could not take any more. The next day(day 3) I had already abandoned hope that this was my answer and I didn't take it, I got the worst headache I've had in a long time. My eyes were messed up, dizzy, nauseous, excruciating pain. Like a migraine, but slightly different. The next day (day 4) it was gone...thank god!!! That's it no medications for me. I decided I need to be more patient and wait it out. I need to stick with the basics: good food, exercise, and regular sleep. There is no wonder drug to save me from this fatigue monster. I sorta feel like I wussed out only two days in. I wanted to know that I've tried everything to reclaim my life, but my experience was so horrible with the Amantadine, I just can't bring myself to mess with my head and body like that again. I just keep asking for patience. I am a doer. I want a plan and the energy to complete it. I would rather work super hard at something than stand around and wait for it to be done. "Waiting" to get better is really hard for me.

I also saw another neurologist later in the month...the WORST one yet...and that's saying a lot because I've seen my share of clowns. I left in tears because I felt like he was my last hope to work with me on my remaining deficits. I shouldn't have let it bother me, but it did at the time. Looks like I will be working on my own. He clearly didn't know anything. I could ramble about all the misinformation he gave me, but I'll spare you the details. Basically, he said all my problems were "in my head", which I always partly agree with. ;) Seizures, stroke, bleeding angioma...yes, all technically in my "head"...but fictional....oh I wish...that would be easier to fix right?!! This has been an ongoing issue for me. If you "look good", there is nothing wrong with you, no matter how much "proof"(MRI's, EEGs, etc.) you have that something is not right. I can just hardly wait to feel good again and forget all these clowns that don't have a clue.


I have one last specialist to see next month, an endocrinologist. We'll see what he comes up with, but so far the doctors have been a waste of time.


I also attended a new stroke support group this month. I have wanted to attend some sort of support group forever, but there were not any in our local community. I saw an ad  for a new group right by house. Perfect! It was great, although I always feel like I don't quite fit in. It doesn't matter...I do fit in. They just don't see it yet. Like many brain injury survivors, my deficits are not usually immediately visible.

10 comments:

  1. Elizabeth, stay away from stroke doctors, they know nothing and just use their best Debbie Downer imitation. My one neurologist just flat out lied to me, and didn't care that I brought my MRI.
    Dean

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    1. Agreed, I had high hopes for this one neurologist even though I've seen way too many clueless neuros. This latest one is doing tons of stem cell research for stroke recovery at UCLA. I thought if anyone could help me it might be this guy..NOPE! :(

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  2. Hi Elizabeth,
    Sorry the meds didn't work out for you, but you know your body best & you're wise to listen.
    In time hopefully more Rx options will await w/less side effects. I too am very sensitive to meds, so can relate w/the frustrations.
    "CLOWNS" describes far too many docs we've unfortunately seen! ;) I can count on 1-hand just how many docs I TRUST & you know who they are. :)
    Glad you found a group so close to home! Both you & your new friends will benefit from your participation. :)
    Take care,
    Patti

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    1. Thanks Patti. Yes, unfortunatly my terrible experience with neuros is not unique. :( I'm way too scared to try any more medication at this point. For now, I'm going to stick with the less invasive measures, and hope time is on my side. :)

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  3. It is unfortunate that doctors can have such narrow and fatalistic views. Oh, and don't even get me started on "It's all in your head." I spent HOURS on the phone with my insurance company as they spun their definition of a "nervous" condition. "Well, it affects your nerves, doesn't it?"

    My doctor tried me on Aricept. I was so sick for days. All I could do was lie in bed and sleep or I felt nauseated and dizzy. Have you ever considered a stimulant? In low doses, it wards off fatigue (albeit temporarily) and also helps prevent sensory overload.

    Don't listen to the naysayers! Pish, posh, I say. Let them put limitations on their own lives. You go ahead and soar!

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  4. You are so right on the doctors! If they were only in our shoes a minute, things would be different.
    I haven't tried any stimulents for the fatigue...and I think I'd be afraid to especially as far as seizure threshold goes. Depending on how things go, I might consider something more drastic in time. Thanks for the feedback.

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  5. Are you still going to PT? I took a 8-month break, and now I'm seeing good progress, again. Most doctors aren't trained to work on chronic (or semi chronic)conditions, and don't have the time.

    Support groups *are* tricky for brain injuries--everyone is so different--but still so important, I think. Especially if you can find one with other young survivors with are dealing with parenting, etc.

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    1. My pt stopped long ago, and phyically I'm pretty good, except some fine motor/coordination in my arm/hand...and some weakness in my leg/foot that makes my shoe fall off. Fatigue is my #1 issue, with some other cognive issues to follow. Congratulations on your recent progress!!

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  6. Elizabeth, you always have such a bright outlook that I sometimes forget how much more you want and need to work through.

    And you didn't wuss out for stopping that med after only a couple days! Many people would suffer through it and wait to talk to their doc again. You took initiative by NOT taking it.

    Hang in there, and I hope that you'll soon feel in-place at your support group.

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    1. Thanks Crystal :)....Yes, it's been a long road, but I am crazy persistant...I'm not giving up on getting better till I'm all better. I'm sure it will come in time.

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