My husbands neurologist and I got into it at the last appt and she thinks my husband and I need to see a marriage councilor. I told her that he is sick all the time, he has headaches, stomach hurts, or he just doesn’t feel good. We go back to her this week for another visit to discuss his status. She said that his scans are fine and she doesn’t understand the headaches that there is no reason for him having them. I have told her that his memory is bad and at first the neurologist said well his memory shouldn’t get worse and at the end of our conversation she said yes his memory will get worse. She totally has me confused. He had a brain tumor removed 9 years ago and had chemo and radiation. I asked her if he had radiation necrosis and she said no. Do you all think she is right in saying we need to see a marriage councilor what would that accomplish, sometimes he seems as if he is so confused when I talk to him and other times he is ok. I just wanted her to give me answers like was his memory going to keep declining and she gave me two answers yes and no. Also two weeks ago an odd thing happened to him that the dr just seems like o well to. He woke during the night with numbness from his knee down to his ankle and then his hand was numb, all on the left side of this body. They did ct scan on him (at local hospital) and mri (at a bigger hospital) and a Doppler on his leg and didn’t find anything. I asked the neuro dr was he just faking this and she told me maybe I just don’t know.
I am so stressed! And to me why can’t she give me some name for what is happening to him so I can do research on it. I am going to ask her Saturday if it is ftd. She will probably say no.
If the doctor cannot explain what is happening, maybe it's time for a second opinion. You could ask her for a referral to another doctor, preferably one who specializes in dementia.
Marsh wrote while I was typing.....his advice for a second opinion is excellent! Here's what I typed while he posted:
michele33, I can't give you advice, but I do have questions. Have you seen his primary care physician, and what medications does he take? Does the neurologist have him on any medications as well? Does your husband have any loss of memories of what happened yesterday? Or loss of memory from this morning? How old is your husband?
If my husband were sick at his stomach, and never had stomach problems before, I would think it would be because of medication. There are several threads dealing with FTD and medications and reactions to those medications here. Read those and see if any would apply to your situation.
Does your husband deny that he has memory loss? What is he saying to the neurologist to make her think there is nothing wrong with him? Most here at Joan's place state that if a doctor recommends a marriage counselor, get a new neurologist.
As I said, all I can do is ask questions - if you can answer them, maybe Sunshyne, Starling and others will be able to give you advice.
Welcome to my website. Take a deep breath, and try to destress. You will find lots of information and support here.
Here is my opinion on your situation. First, find a neurologist/clinic that specializes in Memory Disorders. Go to the home page of this website - www.thealzheimerspouse.com- and look on the left side. Scroll down until you come to "Find a Memory Disorder Clinic". If there isn't one in your area, call the major hospitals in your area and ask for a neurologist who specializes in memory disorders. Get all of the reports from the other doctors to bring with you. You need a definitive diagnosis before you can proceed with anything else.
As for marriage counseling - it is a complete waste of time for someone with any type of memory disorder - usually there are reasoning and behavior problems (not always) along with the memory problems. We have had many members post on this board that their spouses couldn't remember what strategies the marriage counselor suggested, nor did they have the reasoning or judgement to employ them.
So - take one thing at a time - get a diagnosis from an appropriate doctor first. Then you will know how to proceed.
Thanks for sharing. I spent my career as a mental health therapist. My husband has been showing signs of memory issues for years. We finally had all the tests and he does have the early stages of AD. Everyone, including our neurologist kept saying we had marital problems and needed counseling.
We finally took their advice and went to one of the top therapist in the area. I took all of our records - mine too, just in case he thought I had memory issues. He did not want to look at the records and would not let me talk about my husband's memory issues. He kept saying that I was making my husband feel bad about the things I was saying about him.
I hung in there because I wanted to do everything I needed to do. My husband is very charming and would create his stories to meet the therapists needs and they weren't true but I wasn't allowed to clarify them. Finally at the 7th session the therapist asked ME if I would be more comfortable if my husband had "some little memory" tests to help me with my "perceived" problems with him.
I asked him if an MRI, Pet Scan, three sets of neuropsych testing was what he meant. He sat back in his chair like I was on fire and said he couldn't help us. I followed the recommendations for therapy because I wanted to see if we could find a way that we could both come to suitable plans when he wasn't able to remember situations so he could maintain as much dignity as possible. I was always pleasant in the sessions even tho the therapist went after me in almost every session.
I am glad I went because I know I did everything suggested and learned that some professionals just don't know what they are doing. My husband in his disorder is very cunning and never liked the therapist or going. When we left the therapist office, my LO asked the therapist to return our records by mail - the therapist had made a statement that we had given him the records but he had not had the chance to read them. The therapist made several frantic calls to us asking us in the next three weeks for us to please look and see if we had the records because he couldn't find them. Of course he couldn't find them, he never took them and couldn't remember that fact.
I think the people working with patients with AD especially in the beginning don't know what to do so they want to make you go away - anywhere but with them. So, I share this with you to put in your "resource" folder. I felt so guilty for so long that somehow I was creating his problem. I don't know why the professionals think we don't have anything else to do but drag out LO around to get unnecessary tests and doctors appointments unless we saw that their are losing their functioning. I solved my problem and just do what I think needs to be done leaving my LO out of it when I think he won't be able to handle it.
Be careful and be true to the feelings that you have - you haven't been diagnosed with memory issues. You know him better than anyone. Trust your instincts and judgement. Good luck.
Wow, Dagma, thank you for that! It is actual experiences like yours that help us to understand our situations and validate our sanity.
When I was in the Special Education field for over 25 years, one of the most vaulable lessons I learned was - LISTEN TO THE PARENTS - no matter how the child is acting in school, the parents live with them 24/7, and they know their child. It is the same with the spouse - We have lived with them for years, often decades. We KNOW them - we KNOW when there is a change.
Michele my first reaction when I saw the title to your thread was what a waste of time. We too went this route before I knew he had AD. I agree with Marsh (he is a doctor btw) and the others, you really need to find a new doctor. One who will listen to and act on your concerns.
Dagma, I too thank you for sharing. I am glad you followed your instincts and were able to get a diagnoses. It is too bad so many have to go through so much to get answers!
he is 35 yrs old and he has behavior issues also, last night for the first time he had his pants dropped in the den taking stuff out of his pockets (he always takes his wallet and change and places it on the entertainment center) but not with his pants dropped, he was in his boxers and just went to the bathroom like he didn't do a thing. Saturday his pants were down to his butt and his dad told him like two times to pull them up. Somedays he is fine and somedays it is like what happened to the man i married!
He is on depokote, topomax, and synthroid. His memory is going down to me and to others around him. Like last night at church we had a surprise for our preacher and wife for their anniversary and people had stood and said how much they enjoyed them,and was thanking them and he stands and gives a testimony about his brain tumor and it just seemed he never got what the service was about. The tumor was removed nine years ago. It was oligoastrocytoma.
When I was taking him home he said take me to moms so she can cook me a biscuit.
It's from the American Brain Tumor Association. It mentions the headaches as well as treatment (surgery and radiation) and gives numbers to call for information. Your husband is so young! I am so sorry that you both are going through this! As I mentioned before, I am not qualified to give advice, but I can listen and give hugs.
I hope you follow Marsh and Joan's and others advice and seek a second opinion.
We were talking about brain tumors on another thread, and I emailed a bit with a doctor about it. He said that gliomas are next to impossible to kill off completely, and even brain tumors that start off as less malignant (low grade astrocytomas, for example) can eventually transform into gliomas. So I'm wondering if your husband's brain tumor is back. Some of the symptoms fit.
Alternatively, there is evidence that radiation, either alone or in combination with chemotherapy, for treating brain tumors can sometimes cause "radiation induced dementia".
If you wouldn't mind telling me a little more about the treatment (any details you might know about the radiation, for example, and what type of chemo), I could see if I can dig up more information for you.
You said synthroid. What are his thyroid tests like? Do you get them. When they lowered my drug level because I'm sub-clinical and test healthier than I am, among the many symptoms was brain fog. A new doctor put my drug level right back up because my hair was breaking off 1/4 inch from my scalp, and you could SEE that. The brain fog cleared and my hair started growing, the diarrhea stopped, and about half of my arthritis pain calmed down, etc.
I don't say that is what is wrong with him, but it is something that ought to be on the neurologist's checklist because it is an easy fix.
If you can't find a memory center, and if you don't live in a big city you might not be able to find one, look for a stroke rehab hospital. It was the cognitive therapist at our local stroke rehab hospital who recognized what was going on and got us to the right kind of neurologist - the kind that works with dementia patients.
And, if he doesn't have dementia, a cognitive (and/or speach) therapist is the right person to teach your husband techniques to deal with mild memory problems.
So, memory center first if you can get to one, and stroke rehab hospital second if you can't find the first choice.
He had 30 treatment of radiation to the left temporal lobe. He went five days a week and didn't have to go on the weekends. He had to wear a cast on his head they let us keep that. I guess it was to protect part of this brain. I don't even know what the first chemo drug was, it was some kind of pill in 2000 and in 2002 he had a blood clot to come up so the neurologist gave him temodar for a couple of months.
These headaches just keep coming and that is what is bad. He has at least three to four a week. I will update you all after his visit on Saturday. I have a list of questions and I have charted his sick days to give to the neurologist.
Headaches are another symptom that a lot of the LOs have. It seems to be very common with all kinds of dementia, but more common with some that with others.
My husband has an event driven type of Vascular Dementia and has had bad headaches ever since his event. It goes off and on and right now, for example, he isn't complaining about pain.
I looked into side effects of your husband's current meds.
Is your husband actually on both Depakote and Topamax at the same time? This may be the cause of his problems.
Depakote (valproate) by itself has been known to cause "hyperammonemic encephalopathy" -- also called valproate-induced hyperammonemic encephalopathy (VHE). See:
http://www.jabfm.org/cgi/content/full/20/5/499
Encephalopathy is a generic term for any diffuse disease of the brain that alters brain function or structure. Hyperammonemia is a metabolic disturbance characterised by an excess of ammonia in the blood. It is a dangerous condition that may lead to encephalopathy.
Patients with VHE have varying degrees of cognitive and behavioral dysfunction. They may have seizures, and some deaths have been reported.
It is pretty rare for Depakote to cause VHE, but it does happen.
HOWEVER, adding Topamax to Depakote makes the development of VHE more likely -- people who tolerate either drug by itself can develop VHE when given both.
Unless the patient has an underlying liver disease, the only laboratory finding from VHE may be an elevated serum ammonia. Depakote levels in patient samples may be normal and do not necessarily correlate with the degree of hyperammonemia or the severity of symptoms. Patients with a deficiency of ornithine transcarbamylase may have abnormal levels of various amino acids, including increased levels of gluatamine and alanine and low levels of citrulline, arginine, and carnitine. Electroencephalograms show generalized slowing and increased epileptiform discharges.
The primary treatment for VHE is to simply stop the Depakote. Complete recovery generally occurs over a period of 1 day to a few days. However, prolonged recovery times have sometimes been reported. L-carnitine supplementation may decrease ammonia levels and improve symptoms.
The article I referenced didn't talk about Topamax, so I don't know if both of the meds should be discontinued for a while, or if the Topamax by itself should be OK. It also did not say whether to stop the med(s) cold-turkey, or gradually. I did poke around a little to check into this. Several other papers on VHE said things like, "Valproic acid was abruptly discontinued, and the patient completely recovered ..."
On www.rxlist.com (which is the best web site to research side effects and drug interactions), it has a special warning for Depakon (Depakote) that says:
"Hepatic failure resulting in fatalities has occurred in patients receiving valproic acid. These incidents usually have occurred during the first six months of treatment. Serious or fatal hepatotoxicity may be preceded by non-specific symptoms such as malaise, weakness, lethargy, facial edema, anorexia, and vomiting... Patients should be monitored closely for appearance of these symptoms. Liver function tests should be performed prior to therapy and at frequent intervals thereafter, especially during the first six months of valproate therapy. However, physicians should not rely totally on serum biochemistry since these tests may not be abnormal in all instances, but should also consider the results of careful interim medical history and physical examination.
"Patients on multiple anticonvulsants ... and those with organic brain disease may be at particular risk.
"The drug SHOULD BE DISCONTINUED IMMEDIATELY in the presence of significant hepatic dysfunction, SUSPECTED or apparent. In some cases, hepatic dysfunction has progressed in spite of discontinuation of drug."
On the Topamax page, it again warns about the possible development of VHE, but does not talk about discontinuation here. Elsewhere, it talks about discontinuing Topamax using drug tapering if another side effect, metabolic acidosis, develops.
I could not readily find any references to numbness being caused by the encephalopathy. HOWEVER, both Depakote and Topamax -- individually -- can cause paresthesia (burning, crawling, itching, numbness, prickling, "pins and needles", or tingling feelings). Paresthesia is particularly common with Topamax, and the tingling or numbness involves hands and feet, or sometimes the whole body. Both drugs warn that if numbness or tingling occurs, to let your doctor know right away. So I would think that taking both drugs together would increase the likelihood that your husband would develop numbness.
Both drugs can also cause stomach cramps and headaches.
Adverse reactions to synthroid are primarily due to hyperthyroidism due to therapeutic overdosage. They can also include some of your husband's problems -- fatigue, headache, abdominal cramps. It can be difficult to determine the correct dosage and keep the patient within the correct range. Many, many drugs interact with synthroid -- see
I think you and Sandi should be able to get CMEs just for all the learning you end up doing, caring for your spouses.
Starling, this is true! -- there are a lot of places to search for side effects, but www.rxlist.com is the best I've found. Everything you'd want to know in one place...
Thanks so much. The neuro dr said she tried all the seizure meds she could and he is so allerigic that she can't put him on anything except depokote. With all the meds out there it looks to me there should be something else. I remember him taking dilantin however u spell it. That broke him out in a rash and she had put him on another one but I dont know that name.
She is going to put him in the hospital for a full body work up and rule out anything else. She told him he couldn't drive, he tends to run off the road each time he drives anyway so that's a plus for me and the kids.
Thanks so much for your comments, hugs and smiles. He should go in the hospital toward the end of this week.
To check for "hyperammonemic encephalopathy". High ammonia concentration in the blood can be the ONLY laboratory sign that this very dangerous -- potentially deadly -- condition is developing. Depakote can cause it, although that's rare. Topamax on top of Depakote makes it more likely.
It would explain the symptoms Michelle's husband has developed.