Can you offer suggestions please?

[JustMe00]

I posted this in the wrong place I think because I'd love to hear one of the doctor's opinions please................  I originally posted this under the caregivers forum for Alzheimers.

I have looked for a forum that was patient based and all I can find are ones for caregivers, so I'll share my thoughts with you guys and maybe you can tell me if those you care for are going thru the same thing.

Do the patients have head rushes?  The head rushes is what started everything in 1992.  Experienced them again in 94 and 96.  2002 saw them escalate to the point I became disabled.  In 2006 I was diagnosed with Alzheimers.  I was put on meds that almost killed me.  I experienced rapid weight loss, became weak and feeble, horrible head rushes, loss of balance, loss of motor skills, horrible nightmares, inability to sleep, inability to think clearly.  Those are the main ones I can think of.  I tried to explain to the doctor what I was experiencing and was told I most likely had a virus and to not stop taking the meds.  I tried for almost a month to stay on them, then stopped.  Ironically, everything went back to normal with the exceptions of the head rushes, which the doctor had said were mini seizures.

The head rushes bring on the depression.
The head rushes bring on the anger.
The head rushes bring on poor balance.
The head rushes bring on poor concentration and inability to perform.
The head rushes bring on limited motor skills.
The head rushes bring on frustration and anxiety.

I keep trying to figure out what part of that the neuro-dudes, as I affectionately call them, don't understand.

If there are meds for grand mal-seizures, then why not for mini seizures?

I have come to believe that Alzheimers is a blanket diagnosis given to the elderly, when doctors basically don't have a clue.  Alzheimers, as currently defined, pretty well covers everything we might experience as we age.  Doctors use us day in and day out as test subjects on behalf of the drug industry.  You don't think so?  Ever heard this?  Doctor says, "Try this med, and if it doesn't work, we'll "try" something else."  With TRY being the definitive word here.  TRY is basically an experiment.  If something doesn't work, then TRY something else.

That theory is fine until it comes to the human body.

The neuro-dudes can't tell me why I'm still articulate, still have the ability to operate complicated software used in graphics arts and the world of publishing or the most important question of all......  why I know.  I know when I've made a mistake and know how to correct it.  I know when the head rushes are getting ready to start.  I know that they last for days at a time.  I know when my words are wrong and immediately correct them.

Let me hear from you guys please as to whether the ones you care for are experiencing the same things, perhaps it will better help me accept this or to continue to fight it.

[Abhijeet Deshmukh, MD]

Hello.

Thank you. But I know I haven't been able to give you answers! All that comes to nothing if your query remains still a query. Please do not go on the length of my reply. When I don't know what's happening, I go on writing!!

Regards

[JustMe00]

Thank you.  You explained more in the time you gave me than all the specialist combined and you are appreciated.

[Abhijeet Deshmukh, MD]

Hello.

Before you read on:
AD = Alzheimer’s disease (now called Dementia of the Alzheimer’s type)
MMSE = Mini Mental State Examination
EEG = Electroencephalography

Are you sure you had symptoms suggestive of Alzheimer's when you were diagnosed to have AD?

One of the most frequent and the commonest symptoms is memory disturbance. Typically, there is a loss of short term memory. There are disturbances in executive functioning, decision making abilities, planning and other cognitive abilities. When all these symptoms start, they are mild initially. This stage is called "Mild Cognitive Impairment" (MCI).

Did you have these symptoms when you were diagnosed?

Another aspect to AD is the change in behavior. It may not be seen in all the cases. There are subtle changes in behavior which the caregivers can detect. Some of the behavioral symptoms are irritability, sadness, suspiciousness, sleep disturbances and personality changes.

Together, these are called Behavioral and Psychological Symptoms of Dementia (BPSD).

You can judge for yourself. Now, can you justify the diagnosis?

Let us just assume (for the sake of discussion) that there is no doubt that you have AD. Having said that, you are still functioning quite well. This is due to the high level of training your brain has received. You have been an intellectual. Research on AD has proven the fact that higher education and skills are the preventive factors. And even if you do have AD, they prevent the brain from getting affected early. That's why you can still know and correct your mistakes.

Trials! Have you heard or the "N-of-1" trials? There are large scale multicenter clinical trials where thousands of patients are given a new drug before the drug is marketed. And then there are the N-of-1 trials. These are nothing but the treatment a doctor gives to his patient on a one on one basis. (N=number of patients). This is a term to demonstrate that research is never ending. For example, even when Tegretol is very much effective for partial seizures, the N-of-1 trials still continue. Not every patient will benefit. So, your doctors are actually not wrong when they say they will try a second drug if the first one does not work. Memantine and Donepezil are the two most commonly used drugs. Which one are you using?

I would like to go back to 1993 and reassess your situation. I agree with you that AD has been a blanket diagnosis quite often, especially when the health professionals are not used to identify and treat AD.

There are a few simple Neuropsychological tests which you can take regularly to check on the progress. One of them is the MMSE. The MMSE is a 30 point scale. A score above 24 is considered normal. The usual score seen in people with AD is somewhere in the teens. I guess, your score will come somewhere near 30, if not 30.

You can download the MMSE from the following link. Ask someone to administer the scale to you and check the score. Do not look at the questions beforehand.

http://www.chcr.brown.edu/MMSE.PDF

It is very important to rule out any physical illness. Any heart conditions which lead to blood circulation problems in the brain may present as dementia. What did the brain MRI say?

Coming back to 2008, the head rushes seem to be bothersome to you. I guess the head rush means dizziness. It may be associated with clouding of thinking, where you can not think clearly for some time. I doubt they are mini seizures. If I suspect mini seizures, I would ask you to get an EEG.

Head rushes may actually be due to the blood pressure changes. So, I would like you to rule out hyper/hypotension, diabetes and other illnesses.

Let me know.

Regards