I am wondering if any of you have had the experience of hearing about a feeling of pressure in the head from your spouse/loved one. My husband has been reporting it for some time and the nuero does not give much explanation. He is a good doctor, but I wondered if it is something familiar to anyone.
My DH has had a very sharp pain at the top of his head from time to time. We asked about that when he went for his AD appointment and we were told what he is describing in not a problem. I don't know if this is the same thing as in your situation, but I know I started thinking brain tumor and all sorts of weird stuff when apparently there was nothing.
My DH sometimes taps his forehead and says his head feels like it is full of cotton. He doesn't have sinus problems and hasn't had a cold since before I met him in 1964 so I'm assuming it's an AD symptom. I assume your neurologist has checked your DH for normal pressure hydrocephalus.
The dementia symptoms of normal pressure hydrocephalus can be similar to those of Alzheimer disease. The walking problems are similar to those of Parkinson disease. Experts believe that many cases of NPH are misdiagnosed as one of these diseases. The good news is that, unlike Alzheimer disease and Parkinson disease, NPH can be reversed in many people with appropriate treatment. But first it must be correctly diagnosed. (from http://www.emedicinehealth.com/normal_pressure_hydrocephalus/article_em.htm)
My husband occasionally says his head feels like a bomb, most often in the morning- he lies down for a while and then he seems O.K. Don't know if that's the same thing and it has been happening less frequently.
When my DH was first diagnosed he complained of severe headaches. We have been married for 31 years and he NEVER had headaches of any sort. He would put a belt around his head and pull it tight and go to bed. This went on for months. It was reported to the neurologist, all different types of tests were taken and he was on several different types of meds. Finally the Dr. prescribed 400 mg. of TAGAMET twice daily. This is a histamine usually perscribed for all sorts of other things.....but it cleared his head and he no longer complains of headaches. My DH would tell the Dr. that his head felt like a bag of rice that kept moving around. I personally believe ( and I may be wrong) that it all had something to do with the brain cells dying, because during this time, he was on a rapid decline. After the headaches stopped, he seemed to plateau. I don't know if the TAGAMET cured the headaches or if the AD just hit a plateau??? I guess we'll never know, but he still takes the TAGAMET.
Bebe - I just checked out the link you suggested. It is definitely something I will ask about since my DH has been diagnosed with AD and Parkinson's. When I look at the symptoms they are definitely familiar. Since we are going to a research hospital I would think they consider everything, but it isn't something I remember hearing about before you mentioned it today. Thanks.
I recall at one point maybe 6 months ago that DH kept saying the back of his head felt strange. This was at a time when he seemed to progress to a new stage. Until then, he hadn't been so bad, kept saying he felt fine, but after that, he seemed to really be aware of the AD and its effect on him. I came home one day and he was in the driveway and he told me to put him in a Home. It was like he knew what was coming. Since then, he's declined more but has never said anything about his head feeling strange.
For a couple of years before he was diagnosed my husband had very bad headaches. Bad enough that the doctor gave him prescription pain pills. He has forgotten he has them so I doubt if he is taking them anymore. In any case he can't get anymore of them. I don't know if he has them anymore because when I've asked (recently) he didn't (couldn't??) give me a clear answer.
My husband has recently, like the last 2-3 days, noticed these headaches more and more, and said he feels like he is 80, (he is 59) like he is very old, the Alzheimer's is really getting him, etc. I feel so sad for him and there is so little I can do, but it certainly sounds similar to your experience. Thanks.
my husband has mentioned that his head felt "pressured up" and asked me at these times to hold it tight. It also helped to turn the lights out and the tv down. It was never a headache just pressure. I also noticed that his eyes would glass over when this was happening. I had never really given it much thought until now. This has been going on for a couple of years may be once or twice a month.
Hi Zoe, It is funny that this subject is brought up because I have been thinking about it a lot lately. Since we are just starting this journey, I have been looking back at all the things about my hubby that have pained me, puzzled me, or exasperated me over the past decade and wondered if they could have been a sign that something was not right. One of them was strange, non-specific headaches. About 10 years ago, my husband started complaining of headaches that seemed to be in the very center of his brain. He would describe them as feeling as though somebody was reaching to the center of his brain and squeezing and twisting at the same time. He had MRI's, CT's etc done without anything showing up. At the time he was a smoker so it was decided that it must be a sinus problem and so he underwent two sinus surgeries. He was very much incapacitated and had to shut down his real estate practice. It was a very stressful time and I remember finding him rolled up in a ball sometimes. He would get very pale and glassy eyed.
The headaches seemed to go away but at the same time he seemed to have a hard time finishing anything he started. He also was very hard to live with. But in the middle of all this we had our second baby, and moved half-way across the country so much of it I chalked up to stress. Still, I strongly suspect that it was much, much more than that.
Now, hubby has been complaining more of headaches. He also complains of a metallic taste in his mouth.
Kirsty, funny you mention the metallic taste. My husband has mentioned a metallic taste for may be two to three years. May be once a month or so. I can't remember if it was at the same time as the pressure in his head or not. He has not mentioned the metallic taste for several months now. When you say "very hard to live with," would you mind discussing this in more detail? I am so curious about what others experienced for the years before they finally realized that something was just not normal. I experienced mood changes, anger fits, agression, dwelling on something that was not necessary, etc. Recently, and the thing that really got my attention is the money things. Getting way too worked up over bills, money, payments and then finally in the last couple of weeks, not being able to count one-dollar bills. This has happened two times. He can still count larger bills and can use a tape measure. I mentioned last week that we should close our checking and savings accounts and hide the money in the back yard. That way, when the banks shut down, we will still have out money. When he says these thing, I almost think he is joking. If I laugh or infur that he is joking, I get in a lot of trouble because "I never take him seriously anymore."
Hi Mary, "hard to live with"...yikes. How do I explain it. Sometimes I think I suppressed a lot of the memories. Well, our marriage has been in severe trouble several times over the past 10 years. I experienced the mood changes and aggression. I think that part of it was due to the fact that his self esteem was taking such a beating because he struggled so much in his job, in school etc. Around the time he had the headaches, he became convinced that I was having an affair with one of my co-workers (absolutely untrue, nothing could be farther from the truth). When we would argue, he would misinterpret what I would say, or twist it around, and no amount of trying to clarify on my part would change his interpretation of my words. Was this just run of the mill marriage issues? Maybe (and God knows I have not been completely blameless in our marriage travails). But so often I felt deep in my SOUL that something was not right. My hubby has had a very hard time finishing what he starts (education, jobs, etc). This wasn't the case in the early years of our marriage, but started to be so in his mid to late twenties and then seemed to just get worse.
Having said all this, I want to state that my man is a good, decent man who loves me and his kids very much. It's weird but our marriage issues make so much more sense to me, in the light of his diagnosis of MCI and possibly EOAD.
Zoe -- I started reading Young Hope -- The Broken Road today. It's by Tracy Mobley -- she posts over on the Alz Assoc website as younghope1. She was diagnosed in 2002 with EOAD at the age of 38 (!!!) and often posts there to try to help us understand what goes on in the AD mind. Remarkable woman.
Anyway, she says, "Another symptom I have is numbness and tingling on the right side of my head. Sometimes I realize the numbness is there and I know that I need to be more careful in what I do. In my case this is a precursor that I have over done myself and I need to rest."
We just got a new refill of the pain med my husband takes for his headaches. He had been taking one pill every afternoon after months of not needing them. Since the prescription was so old, I called the doctor's office and asked if it was OK for him to have more of them. The answer was yes. He told me yesterday that they did make his pain go away.
I find it interesting that so many of our patients have this symptom. So far I haven't seen it mentioned anywhere else. That isn't unusual. I've found that the patients frequently do discover something like this well before the medical establishment discovers it.
My husband called me one day on his cell phone to tell that he was sitting on the side of the road near the AFbase. When I asked why he said that he was "rushing to the hospital b/c I have hot metal pouring in the top of my head through my skull". That was the beginning of the diagonising b/c I insisted. He was also diagn. with Multiple Mylomia. We went to the cancer center but they have agreed to not start agressive treatment. However, it lead to a lot of MRI and each time the DR would pat me on the shoulder and shake his head. HELLO talk to me, do not treat me like your grand child!!!!
His latest thing is referring to himself and to me as "they" and "them". He called the psych. himself yesterday and was started on cymbalta. He said that he is happy now.(he has only had one dose!!!!!!!!!)
Sounds like your husband could have a plasmacytoma or a hot spot on the skull from the MM. Also MM can have a companion disease--amyloidosis and there is amyloidosis of the brain that causes horrible headaches and dementia. I would think all of these would be picked up on MRI's if the docs know what they are looking for.
My husband also has MM and AD and we will autopsy to see which he has. He has been diagnosed with just a few more months to live.
Your husband's symptoms just don't sound like AD to me. If I were you I would go to the nearest research hospital for further tests. We did that several years ago and just to have the diagnoses confirmed was a relief.