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.

Sunday, September 30, 2012

Tackling fatigue

I am now a year and a half out of deep brain surgery and stroke. Fatigue is a deficit that I can not yet escape. My recovery has been excellent except for this fatigue. I HATE it!! I am constantly reading, researching, trying to figure out how to fix it...a mostly fruitless effort. But I never give up HOPE that it will get better. When? How? I have no idea, but the following outlines my latest effort.
I saw an endocrinologist to make sure there are no other medical explanations for the crippling fatigue I deal with daily. It seemed like a good idea because after brain surgery one can never be sure that something else didn't go wrong while they were in there. I also have hypothyroid (onset 4 years ago during my pregnancy) which is often a cause of fatigue, but supposedly my thyroid has remained stable according to my PCP. My opinion is that my thyroid is at least part of my fatigue problem, but I can't be sure. So, I had a full work up with the endocrinologist and there were a few issues identified. According to the tests, my thyroid was within the "normal" range and my blood sugar is low frequently. The doctor changed my thyroid to Armour and doubled the dose despite the "normal range". What do you know? I got two more hours out of the day. Previously I was awake for 4 hours twice a day, now I'm awake about 5 hours twice a day. So I think I'm heading in the right direction. My assessment is that I need more thyroid, and I need to do something about my diet to regulate my blood sugar better. I probably need to eat more frequently. Since my surgery I am less hungry, my body just doesn't seem to send the hungry message, so now I'm trying to eat at least every few hours even when I'm not hungry.

Next, I saw a naturopath. She did an assessment and made a ton of recommendations both dietary and supplements. I went home and started to look up all the supplements and was completely freaked out. I don't like taking any mediation and supplements are even more scary to me since they are not regulated at all. There is no guarantee that what they say is in the bottle is actually in there and sometimes they don't even know the active ingredient so there is no chance of "dosing" the unknown. You can not easily look up interactions, contraindications, adverse reactions, and such like prescription medications. The research on supplements is largely anecdotal and rarely includes double blind, controlled, peer reviewed, published studies. SCARY!!! I like evidence based medicine. But I want to feel better so badly and maybe this stuff just might work, but at what risk? Oh, what to do? I did a quick look up of all the supplements she had recommended and most of them contained ingredients that had the potential to lower the seizure threshold and figuring out which could be blood thinners was close to impossible(anyone with cavernous angiomas must avoid anything that thins blood)..YIKES!! and no thank you! I'm trying to get better not worse. My risk for seizures is high since I have "persistent hemosiderin" "remnants of old blood from my bleeding angioma" (they were not able to remove all of my blood stained brain during my surgery because there was just too much.), and now I also have scar tissue that can create seizures. I am also off anticonvulsants by choice, risk known to me, which puts me at an even greater risk. So  anything that can potentate seizures is out for me. To me that is what is frightening about alternative medicine. Some people think, "It's natural...it must be safe." No way!! Supplements can be more dangerous than pharmaceuticals, even though it's pharma that gets a bad rap.

The diet recommendations were a whole other story. The purposed diet was: no dairy, no caffeine, no gluten, no corn, no beans, no white rice, no soy, no nightshades(potato, tomato, etc.), no mushrooms, no eggplant, no carrots, exchange regular sugar for stevia when possible, no soda, and no alcohol. So what's left exactly? Not much. As much as I was less than thrilled with the purposed restrictions...I thought I had to at least give it a try. For one week...I did. I lost 5 lbs that week and felt like I was starving...still completely exhausted. No different in the energy dept.

Needless to say, the whole thing was a waste of time and money. The lady did refund my money for all the scary supplements she recommended, after arguing with me(which was completely annoying to me). Especially since she told me that I was "lucky" she was not charging me for the time that she spent arguing with me on the phone. Please, I already spent $300 on the office visit that was a complete waste I think if you are in the professional business of recommending supplements you should be completely informed of the risks involved. As a nurse, it was my responsibility to make sure that each and every drug, prescription, intervention, was appropriate for my patient. Sometimes the doctors made mistakes and it was my job to make sure the drug, dose, etc. was right for the patient. If you are in healthcare it is your duty and responsibility to not cause harm at the very least. I expect the same level of responsibility and accountability from members of my healthcare team that I provided for my patients and I think it's complete crap when my expectations are not met. 

As for my fighting fatigue plan, I'm starting to run out of ideas, but I will never give up hope.