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    Dealing with Cerebral Athrophy and rapid cycling bi-polar disorder
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    floridapoolbum posted:
    In December of 2010, my life changed dramatically when my doctor told me that I have Early Onset Alzheimer's. Having watched my wife seeing her mother slowly slip away because of Alzheimer's, I was devastated. As my posting, "So You've Got Alzheimer's!" eloquently stated, I knew that something was wrong but had prepared myself to hear that I had a brain tumor. Anyway, as it turns out, I don't have Early Onset Alzheimer's, I have Cerebral Atrophy, which is shrinking of the brain.



    I knew that something was wrong because I was having so many headaches way to often. I got a Neurologist, whom I really didn't care for, by the way. She blamed my headaches on this, that and every other thing. I gave up or great reduced this, that and the other things but still had the headaches. I didn't graduate from medical school or from college for that matter, but I wondered why she didn't even think that the shrinkage in my brain might be at least part of the reason for headaches? She won't even entertain the notion! It seems reasonable to me that if you have a brain that starts shrinking that that is going to hurt.


    Let me explain my headaches, I have three types of them. The most frequent of these is a general pain all over my head, sometimes feeling like my brain is being squeezed on the right and the left toward the middle. This headache is pretty much there all of the time. They were annoying but not severe so I got use to them, I mean what choice did I have? The second type of headaches is usually on one side of the brain at a time and in the beginning was not nearly as frequent. These headaches sometimes resulted in sensitivity to light and/or sound (I have total hearing loss in my right ear and only 25% hearing in my left ear.) and sometimes extremely sensitive to light (directly and indirectly). Often the pain was from direct light but sometimes it was from light from the side, like my peripheral vision. The pain was more intense and (in the beginning) didn't last very long. Now, I prefer to be literally in the dark most of the time. I use to love being out in the sun and enjoyed living in Florida, where it was sunny almost every day! The third type of headache, is the most painful of them all. The pain was like a sharp, intense pain in the back of the right side of my brain. The best way to describe it is like I got shot in the head from behind me. These are by far the most difficult to deal with. The length of these headaches varied. Usually, the last two types of headaches would require lying down and remaining very still in a dark room, usually my bedroom. I had prescriptions for these but nothing seemed to work very well. Having a Neurologist who was very wasn't forthcoming about my condition or treatment and seemed either like she really didn't believe me or really didn't care either way didn't help. Attendance problems from this and issues related to this, bi-polar disorder for one, and other conditions caused me to lose my job of almost 13 years. At that point, even with the bi-polar disorder, I had worked steadily for almost 40 years.


    Now, I have been without insurance and basically without treatment for more than a year. My insurance under the Universal Healthcare Act begins in the beginning of March. I am hoping to be eligible for better coverage with a state program. You would think that this would be a relief but the co-pay for specialists is $80 per visit. I was able to get Social Security Disability and a small pension, but still the thought of that $80 every time is scary. Because I'm on Disability, I will be eligible for Medicare for another year or so.


    Recently, I have been to the emergency room twice within the last year because of the headaches. The first time the medication was very helpful. A few days ago, the pain was so intense that my wife had called for an ambulance. While in the hallway of the hospital, waiting for a room, I hear one of the people say that they had never heard of Cerebral Atrophy! That wasn't very comforting! I don't know what they gave me but the first drug hardly worked at all. The second drug slowly reduced the pain, but made me really antsy, anxious and felt like I wanted to crawl out of my own skin. The second type of headache is more frequent and unfortunately so is the third type. Today, I told my wife that I would rather have a brain tumor. At least I would know what was going on and hopefully the doctors would be more familiar with treating it.


    Look, I have heard that medical science knows or understands very little about the brain. Generally, they can't really know what's going on with Alzheimer's patients until they do an autopsy. I have been a big fan of the television show "Grey's Anatomy" before it even started. I wish that Dr. Derrick Shepard could go in a map my brain like he did with a young boy in an episode. I wish that they could pop me open and see what was going on and get a better understanding of what is happening to me and could help me reduce the pain. In episode 1109, "Where Do We Go From Here?, Dr. Meredith Grey found a pinhead sized tumor in a women's pancreas. The patient was accused of deliberately driving her car into other cars then purposely driving off of a bridge with her two children in the car. The husband said that she would sometimes be confused, stressed and forgetful while tending to the needs of her children and household. I wish that I could check into Grey/Sloan Memorial Hospital and get that kind of care and attention! I know what is happening to me but wonder if for a lack of understanding, or caring, I'll get another neurologist who belittles my symptoms and concerns or won't tell me what's going on! It's my body, my brain and I feel that I have a right to know everything that is going on. This neurologist told me and my wife that I had a brain aneurism and then when I asked about it later denied that I had one. Having had these experiences, I am reluctant and fearful of going to see another one, especially at $80 a visit. Are they are any Gray's Anatomy, gung ho types of neurologists out there who would be interested in my case?
     
    avatar
    cjh1203 responded:
    Hi Floridapoolbum,

    I remember you from when you were posting several years ago. I'm so sorry you're having a rotten time. I'm on my tablet, making it a pain to type a long reply. I wanted to let you know I've read your posts and will write more tomorrow.

    Two things in the meantime: are you able to look for another neurologist? And your second kind of headache sounds like the migraines I got for several years. There are medications available for them now, but I have also read that eating ice cream helps a lot of people, because of the cold's effect on the blood vessels.

    How long does the third type of headache normally last? If it's fairly brief but excruciating, they could be cluster headaches, which can be helped by oxygen. My father got those and carried am oxygen tank with him wherever he went, just in case.

    More tomorrow.

    Best wishes,
    Carol
     
    avatar
    cjh1203 responded:
    Hello again, Floridapoolbum.

    As I said before, I'm so sorry you've been going through such a terrible time.

    I couldn't find much about cerebral atrophy causing headaches -- none of the articles I read said that it does. There are people with cerebral atrophy who do get headaches, but from what I've read, no connection has been shown. It sounds like the headaches have to be treated on their own, but that would mean determining what kinds of headaches they are.

    It's so frustrating to have a doctor you don't like but, as in any profession, there are good ones and others that aren't so good -- or sometimes, it's just a difference in personalities. If you try another neurologist, you may find that you like him/her much better than the one you've been to. I certainly wouldn't give up trying.

    I mentioned cluster headaches in my previous post. Since I don't know how long each episode of your third type of headache lasts, I don't know if that's what it is. My dad has those for years, and he said that if he'd had a gun handy when he got them, he would have shot himself, they were so painful. As horrendous as migraines are, the pain from cluster headaches is apparently worse. Here's an article that might be helpful. My dad found that oxygen was the only thing that helped, but it did usually help pretty quickly.

    I'm just curious -- why can't you get insurance until March?

    This community is pretty quiet now -- not nearly as active as when you were posting here before. Please do keep posting, though.

    Carol


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