I was hoping last week that the daze I have been in for the last two years had finally passed. No such luck! :( Last week was great and provides me with hope that someday, I will not always feel strange. It had been so long since I felt good, I almost forgot what it feels like to be "normal". I'm not sure what happened last week that made such a noticeable difference. Unfortunately, this week it has been more of the same old routine: dizzy, spacey, "out of it", confused, like I'm in a daze. It sucks, and I'm tired of it! At least there is hope that I can feel better, last week was a first..now if we can only recreate last week's magic. Crossing my fingers!
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.
I'll cross my fingers for you too.
ReplyDeleteLinda in Winnipeg
Hey Elizabeth,
ReplyDeleteAs a brain-injury friend of mine says, consider those 'bad' days a "hiccup" in your recovery, give yourself a hug & know that tomorrow holds possibilities for feeling a little better! :)
You've been through SOOOO much and our poor brains take lotsa time to heal. :)
I'll be crossing my fingers this week will go better for you!
Hugs & well-wishes,
Patti
Hello, I find my self feeling the same way you do. The best way to describe the fog is, Do you feel like your head is "full," like everything is surreal; like you are watching life go by but aren't really a part of it?
ReplyDeleteIT is very frustrating, Sometimes I am 100% for an hour or a couple of minutes. Sometimes like you mentioned I have a perfect day but I never know how long I have. If you have any info,supplements therapy that has helped you please contact me. The supplement that works best for me is called Brahmi(gotu kola) it is an herb used in india and sold everywhere, I get it from amazon. I've tried ginko, b vitamins, many nootropics and other things but nothing has really made a big impact. Thank you for sharing I hope to learn more from your experience.
Linda and Patti,
ReplyDeleteThank you for the encouragement. I'm having a bit of hard time dealing with getting better and then worse..I guess I'm getting spoiled...only wanting to get better and better. I've been darn lucky already. I've worked really hard and I'm so much better than I was, but I still want to be better. Time will tell, but thank you!
Reg, Welcome. Sorry you are feeling this "fog" too. It's really a drag! As far as supplements I'm paranoid. I don't take anything "alternitive". I'm too afraid of making myself worse. Do you have a cavernous angioma? With cavernous angiomas, I believe it's best to be cautious, nothing that might thin your blood, and always check with a really smart doctor before taking anything. I thought about taking "neuroaid" after reading about it. I asked my doctor and he said ",No way." Supplements are not regulated by the FDA and there is really no guarentee that what they say is in the bottle is actually in there or that it works. Too much risk for me, although lots of people take them and swear by them. I just try to stick with mostly healthy foods, no alcohol during recovery, and a very rigerous rehab program involving physical and mental training. Best wishes to you!
Elizabeth I was involved in a car accident 2 years ago and suffered a traumatic Brain injury, I won't go into details but at first the doctors informed my parents that due to the extent of the injury I would probably have problems with my motor functions and be left with much lower cognitive function(mental retardation). Thank fully they were WRONG. It has been a long and slow recovery, I have been able to function perfectly in non taxing situations but I need to be able to stay at 100% or even 70% so I can get back to building my career. I'm 28 have two degrees and very use to relying on my brain to cram for exams or handle long taxing work days. Since the accident I switched to a much easier jobs but I am eager to be able to look for something more rewarding and unfortunately more taxing on my brain. Here is an article that highlights different medication used to help memory and cognitive function after a TBI( http://www.alaskabraininjury.org/Library/Treatment%20and%20Rehabilitation/Articles/Medications/Medications%20improving%20cognitive%20functioning.pdf)
ReplyDeleteReg,
ReplyDeleteSorry to hear about your accident...but at least you're making a great recovery! :) way to go!! With TBI, that would be so much more difficult for me..the taumatic part. I had more than a year (prior to my surgery/stroke) to process what might happen. The year and a half of waiting/thinking was brutal but I felt prepared going into surgery..I had worked it out for the most part. I thought as long as I'm not dead, then I'll be fine...and it's true. I did a bunch of research ahead of time, so when they told me I had a stroke during surgery...I wasn't really freaked, I knew I could get better and I have. I wasn't expecting all the cognitive sort of changes but for the physical ones, I felt prepared to take them on. This "brain damage" stuff is hard to deal with. Not that I was the smartest person ever before...but I felt pretty smart, good in school, I have 2 degrees too, and had a pretty good job. I would always think that I could do anything...not limited at all by my capibility. That is gone for now. I'm hoping to get as close to my old self as possible, and hope that time is on my side. Congratulations on making it this far and thanks for the link. I'll check it out..good luck on your continued recovery!
Elizabeth
There is alot of good info on the following two links. They are two threads in which I started posting and have gotten many responses with advice(supplements,medications,therapies and exercises) along with scientific papers to backup their input. I also have posted what I am currently taking and results(if any). I post under alcast082. Hopefully it helps others in our situation or at least saves them the reading and searching time.
ReplyDeletehttp://www.mindandmuscle.net/forum/38658-new-need-help-traumatic-brain-injury#post591931
and
http://www.legalhighsforum.com/showthread.php?p=34031#post34031
I have come to your blog "by chance" (if such thing exists). I also had surgery over 7 years ago. A bleeding cavernous angioma bled in my right parietal area of my brain. It was first confused with a brain metastasis, but a week after the MRI gave us a much clearer vision.
ReplyDeleteNow the main problem is gone, though new animas appeared in my brain.
I am a Natural Doctor from Barcelona, Spain and I kept on looking and looking, trying to find a cure to a problem that was causing me. Some serious problems and an intense anguish.
A few months ago, I was advised by a colleague to contact Drs. banerjee from India. They are world respected Homeopaths with an incredible experience and success rate in treating cancer, and particularly brain dancer and brain rumors, among other conditions. So I though that if a cavernous angioma is a tumor, maybe they could help me. So I did and in a few days they answered my e-mail with a complete treatment for two months. They are extremely generous!
Symptoms have disappeared and right now I am at the end of the second month of treatment.
Please, write to them and present your case, I am sure he'll be able to help you. This is their e-mail address is: info@pbhrfindia.org
If you experience any problems, please do not hesitate to contact me at info@medicina-complementaria.es
I wish you all the best!