Vascular Dementia following Hemorrhagic Stroke (brain bleed)

[brain2005]

Hello!

 

I am putting this inquiry out there for whatever information it will generate. Does anyone have any information on Vascular Dementia ("VD") following bleeding strokes? Have you received a DX of VD? What meds or therapies have been prescribed? Any information will be greatly appreciated. HUGS, WALTER (brain2005)

[dstraugh]

Walter,

 

May I suggest clicking on Community Links at the top of the message board. You will then see a drop-down menu. Click on search. When the next screen opens, type in vascular dementia and select the search to take place in All Forums. I did that and there were 80 total posts that were made available. Be sure to also come back here often to see what other replies you receive.

 

[brain2005]

Thank You ... I will research that and see what comes up for me too. Hugs, WALTER

[swilkinson]

Walter, if you do a search here go to "All forums" and you will find a lot of posts by Ann Rogers and myself as both our husbands have vascular dementia as well as a lot of physcial deficits as a result of multiple strokes.

 

Although Ray's condition is deteriorating it is not always the case with vascular dementia post-stroke so don't get disheartened by what you read. My husband is on Reminyl (galatamine) which as called by another name in the US and Ann's husband on Aricept plus Namenda. There are six or more drugs used seperately or in combinations for the treatment of dementia now, all are aimed at keeping the condition stable, none are said to be a cure. Ray's Reminyl comes through his neurologist, not our family doctor.

 

Dementia may be very mild such as confusion and some short term memory loss and progressive to a greater loss of intelligence etc. Get as much information as you can and rest assured we will support you all we can here.

 

(((Hugs))) from Sue.

[brain2005]

Hi SUE!

 

Thank you for replying to my inquiry. I did perform the search suggested and read most of the posts. Your message below was the only one I found that actually mentions any medication available for this type of dementia. So, I really appreciate that.

 

I went in a couple of weeks ago for another neuro-psyche evaluation because my memory and sequencing abilities seem to be getting worse, not better. Long-term memory is pretty strong, but short-term is very poor. Anyway, I am concerned. I will not get the results until the end of this month. It is interesting that you mention Aricept and Namenda ...

 

I was under the care of Dr. Goldman of the Amen Clinics in California, and he had me on Aricept and Namenda for a while. They REALLY HELPED SO MUCH. The only problem was that my insurance refused to cover it because I was not DX'd with Alzheimers or Dementia. The cost is prohibitively expensive for me to pay on my own.

 

So .. I guess we will wait and see what DX comes up this time. Again, I thank you so much for your reply. Hugs, WALTER (aka Brain2005)

 

 

Walter, if you do a search here go to "All forums" and you will find a lot of posts by Ann Rogers and myself as both our husbands have vascular dementia as well as a lot of physcial deficits as a result of multiple strokes.

 

Although Ray's condition is deteriorating it is not always the case with vascular dementia post-stroke so don't get disheartened by what you read. My husband is on Reminyl (galatamine) which as called by another name in the US and Ann's husband on Aricept plus Namenda. There are six or more drugs used seperately or in combinations for the treatment of dementia now, all are aimed at keeping the condition stable, none are said to be a cure. Ray's Reminyl comes through his neurologist, not our family doctor.

 

Dementia may be very mild such as confusion and some short term memory loss and progressive to a greater loss of intelligence etc. Get as much information as you can and rest assured we will support you all we can here.

 

(((Hugs))) from Sue.

[arogers]

Hi Walter,

 

I have found quite a bit of information on the web about vascular dementia. Another name you may see is multi-infarct dementia. The information is usually contained in sites that deal with Alzheimers disease. Even though the symptoms with Alzheimers are seen in vascular dementia as well, the memory issues, confusion, cognitive issues, emotional lability (or solemnity), incontinency, shuffling when walking, difficulty feeding oneself, difficulty in verbal expression, lack of awareness regarding personal hygiene appear much more suddenly with vascular dementia, and that is the only real difference. The progression of vascular dementia seems to be much shorter than Alzheimers disease. It's been my experience with Bill that he is more confused in the evenings and throughout the night than he is in the afternoon. He seems to be more dilusional in the evenings before he goes to sleep than any other part of the day. He is not a morning person, and has not been since his strokes, so we do most things in the afternoon or early evening.

 

Bill has been taking Aricept and Namenda for about 14 months now. I do know the Namenda makes a tremendous difference in his ability to function at all. He was first prescribed Aricept, but after only 2 months he was found to need the second medication. Those two medications provided us with a year in which we were able to take two wonderful vacations.

 

Bill's third anniversary of his hemmhoragic stroke was October 25th. March 21st will mark the 3rd year anniversary for his ischemic stroke that created havoc with his right leg and arm. He had gotten to the point where he was able to walk in the house without a cane. Since his TIA in August he has come back to using a walker from not remembering how to put one foot in front of the other to walk. The PT feels he will not be able to use his cane now, and should not walk without the walker. This is the progression of vascular dementia.

 

Please feel free to pm me if you have any more questions. I'd be happy to help as best I can.

 

Warmly,

[arogers]

Hi Walter,

 

I just read your post about your insurance company refusing to pay for Aricept and Namenda. Did your neurologist contact your insurance company? Exprescripts is terrible - but if the doctor contacts them with justification they WILL pay for a medication. You may have to push for it, but it should be covered....just keep on screaming and point them to the articles describing vascular dementia in the same sentence with Alzheimers!

 

Warm wishes to you,

[brain2005]

Hi Ann!

 

Thank you so much for your two replies to this question. I AM sorry that you are dealing with this dementia with your husband ;(

 

My neuro-psychiatrist said that he DID contact insurance, but I did not actually witness him making the calls. The word I got was that he did call them and it was still to no avail. We are dealing with HealthNet (HMO) (hope it's OK to mention them by name; if not I guess it will be edited out). Anyway, they are not that great about being willing to pay for treatments. Thank God I had Blue Shield of California when the stroke hit and I had my two brain surgeries. I shudder to think what could have happened had that been the case. I might not be writing this message to you.

 

I will keep on keeping on as long as I am able. Thank You Again for Your Help and Guidance. HUGS, WALTER (brain2005)

 

Hi Walter,

 

I just read your post about your insurance company refusing to pay for Aricept and Namenda. Did your neurologist contact your insurance company? Exprescripts is terrible - but if the doctor contacts them with justification they WILL pay for a medication. You may have to push for it, but it should be covered....just keep on screaming and point them to the articles describing vascular dementia in the same sentence with Alzheimers!

 

Warm wishes to you,

[arogers]

Hi again Walter,

 

I thought after I'd written that you said you had not been DX'd with Alzheimers or Vasular Dementia. You know some good can come out of anything. Maybe the good thing about your recent testing is that the physician will finally put a label on your condition. If the lack of a diagnosis is the basis the insurance company is using to deny you access to medication that will help you, problem will be solved.

 

I'm sure your doctor did contact the insurance company - they want their patients to have access to medication they know will improve their quality of life - too bad the HMOs don't share that interest. (As you may be able to tell, I'm NO fan of HMO's. - I won't go off on my tyrade about that though.)

 

I have mentioned this on-site before, but there is an excellent program I'd encourage you to try. Parrot Software offers a whole range of tools to use for cognitive training. http://www.parrotsoftware.com is the website and I'd recommend you take a look. I don't represent the company or anything of the sort. When I first used it with Bill he could only work for about 45 seconds without beginning to yawn. Before he had his TIA in August we could work for about 10 minutes before he began to yawn. It provides progress notes for you so you can track how you are doing. It's really important for you to keep working your mind right now and this provides a good way for you to do that. It's kind of neat because the program will talk to you. When you get an answer right the guy (or girl) will tell you how good you're doing! (So I was born blonde!! Sometimes it's nice when the little things put a smile on our face.)

[bstockman]

For Prescription Help you can find out the name of the manfacturer. You can go on line or find their toll free number. Most brand name manfacturers have help available for low or No cost medication if you fill out their forms.

 

Also Partnership for Prescription Assistance: pparx.org

Sun Patients

Health Well Foundation

RX Out Reach

[arogers]

Bonnie,

 

Thanks for that reminder! My mom participated in that program while she was living and it was a Godsend.

 

Warmly,

[brain2005]

Dear Group!

 

I guess I will reply to my own post since this is the only way I can figure this whole process out.

 

I was evaluated for Vascular Dementia by two neuro-psychologists, not medical doctors. Their findings roughly paralleled earlier findings from about a year ago. They are of the opinion that there is memory / memory capacity lost, but no case for ongoing dementia. So .. that is a blessing and also unfortunate because it blocks me off from receiving medications which really do help me. I know this because I have received these meds in the past, and they helped immensely with memory and focus issues.

 

I will update as needed, and I want to thank everyone who did reply to my original inquiry. Happy Holidays to All!

 

WALTER (aka Brain2005)

[bstockman]

I was waiting last week to have blood drawn, the man next to me started chatting. He stated he had some memory issues and his Dr had given him a prescription. He said he has noticed a difference and the medication is helping. So you may ask your Dr to write a letter to your Insurance company stating you need the medication to help with memory loss related to stroke deficits.

 

Sometimes you can get a drug okayed. Some Insurance Companies require that you have tried 3 similar medications.. and they did not help, so you need _________ (medication).

 

Some Insurance companies will okay a medication if a Dr writes a letter explaining the medical diagnosis and need of medication.

 

So don't just assume.. they won't. you have a right to ask for an appeal or justification for use.

[brain2005]

Hi Bonnie Thank you so much for your reply to this post. I really appreciate that information and will not assume anything OR GIVE UP. After my neuro eval mentioned above, I also learned that my neurologist has retired and I guess the clinic has no replacement yet. So that was a bummer too. I cannot understand why such a vast hospital as Univ. California Davis Medical Center (UCDMC) has such a problem recruiting and retaining neurologists. I am mystified. What else is new, right?

 

I am going back to my GP again as he is the source of all the referrals and I believe he may be open to prescribing the indicated medications. I will keep y'all posted. HUGS, WALTER

 

... He stated he had some memory issues and his Dr had given him a prescription. He said he has noticed a difference and the medication is helping. So you may ask your Dr to write a letter to your Insurance company stating you need the medication to help with memory loss related to stroke deficits.

 

Sometimes you can get a drug okayed. Some Insurance Companies require that you have tried 3 similar medications.. and they did not help, so you need _________ (medication). Some Insurance companies will okay a medication if a Dr writes a letter explaining the medical diagnosis and need of medication.

So don't just assume.. they won't. you have a right to ask for an appeal or justification for use.

[arogers]

Hi Walter,

 

I just looked at your post. A neuro-psychologist does not have the license to prescribe medication. Bill's medication for his short-term memory loss (vascular dementia) has been prescribed by his neurologist. In fact both the aricept and namenda were prescribed by the neurologist. The neuro-psychologist evaluated him for his cognitive abilities.

 

The neurologist does a basic evaluation for Bill's memory through some testing. You really should not be cut off from receiving medication that has helped you in the past due to a psychological evaluation. The other thing is, at least with Bill's neurologist, is that their specialty seems to invoke a sense of "superiority" over a psychologist and so they will not really accept their (even two of them) evaluations as reason not to prescribe a medication. (Now I'm giving you our experience and others may have had different experiences.) Do you use an HMO for your insurance? I am just positive there are neurologists in your area. Maybe not at the clinic you are accustomed to, but there have to be some in another clinic or practice. Do ask your PCP about a referral to a neuologist since it really is important that you have one with your stroke history. If you do use a HMO you will need to do a little bit of research, maybe and possibly even make some phone calls.

 

Another thing with vascular dementia is that unlike Alzheimers disease, the condition remains stable for months, then there seems to be a step down. The fact that you are stable, if you have vascular dementia, is not any reason to believe this is the way it will always be. At least that's the way I understand it and the way it's been for Bill.

 

Anyway, I don't want you to give up on this thing. Where there's a will there's a way.

[brain2005]

Hi Ann!

 

Thank you for reply to this post. I do know that neuro psychologists cannot prescribe medication. That was one of the early indicators that this whole process was flawed right from the start. What really fries me is that I waited 6 months for this evaluation. Don't get me wrong; I am grateful that VD was not diagnosed, but that may be a flawed conclusion too. These people are not medical doctors. Keep Ya' Posted! HUGS, WALTER

 

 

[arogers]

Hi Again!

 

BTW, The Neuro Psychologist did NOT diagnose Bill....I read and read on the internet and finally went to Bill's PCP and said, "Look, this is what I've been reading and these are the symptoms Bill is displaying - what do you think?" He acknowledged I was correct. The next visit to the neurologist I asked him the same thing. At that point the doctor said he'd like to do a brief cognitive evaluation. After that evaluation he came in and explained about Aricept. (That evaluation included answering simple questions like the date, the president, the governor of the state, counting by fives, looking at a clock and telling the time, drawing a clock and putting the time in, looking at shapes and drawing them) I said, yes - by all means I'd like to try it. Bill agreed. It just wasn't really, really effective alone, but when Namenda was added several months later the improvement was noticable almost immediately. The pharmacist told me that in Alzheimers patients he wasn't aware that an improvement was not as quick. He was interested by the difference there seemed to be between a patient with VD and one with Alzheimers. Also, I forgot to get Bill's Namenda prescription refilled once and within four days he was unable to communicate and almost unable to walk. I felt awful when I realized what was going on (discovered when I did his med refill), but within 3 days of resuming the Namenda he was back to his base.

 

I don't know whether I bring good or bad news to you Walter. But I do get the sense that you want to be armed with all the information you can get in order to advocate for yourself. I do hope I bring that to you - information with which you can use for your well-being.

[brain2005]

Hello Everyone Who Posted on this Topic in the past...

 

Just thought I would update this:

 

I did finally received Aricept and Namenda for Vascular Dementia following massive hemorrhagic stroke. These meds are not only very expensive (hence the insurance company's reluctance to pay for them), they are also EXTREMELY POWERFUL.

 

Had an experience recently from which I am just now beginning to recover (took about three weeks to start feeling relatively sane again, keyword "relatively" :laughbounce:

 

The med mix got "off" and I went through a period where I literally had to struggle to remember "who I AM" and "where I AM" ... needless to say, this was extremely frightening. I told my wife it was time to put me in a managed care facility ...

 

She arranged an emergency session with my neurologist and the meds have been adjusted and I am gradually beginning to return to normal, at least normal for me... Which is a REAL TRIP!!

 

Hugs, WALTER

[arogers]

Dear Walter,

 

I had a similar experience with Bill a few months ago when I missed getting his Aricept refilled and when I put his med tray together for the week I omitted the Aricept. He missed the dose for six days - until the next week's tray refill. By that time his cognition had slipped to the point where he was a shell. He once again had the look of "the lights are on, but nobody's home". He had no concept of time, who he was, who I was or where he was for that matter.

 

I was nearly ready for a doctor's visit when I discovered the problem. Our experience with Aricept is that he reacts very quickly to its benefits. He was pretty much back to his "normal" within three days - thank the Lord.

 

One thing to remember with vascular dementia is that the disease seems to work in a step fashion. Bill's condition remains stable for months, then he seems to have a dip, then he levels off again. From what you say about being able to recognize for yourself there is a problem, I think you (and your wife, by the way) should consider you are probably still in the early stages.I'm sure you have read this, but I'm including a link to the description of the stages of Alzheimer's Disease. You may recognize, by viewing the description of the seven stages where you are right now.

 

http://www.alz.org/national/documents/topicsheet_stages.pdf

 

Good luck to you, Walter - It's great to see you on the boards again!

[brain2005]

Dear Ann! Thank you so much for your reply.. You have consistently been an inspiration to me and so many others, no doubt. Please give my best to Bill!!

 

I have copied and pasted your post into a message to my wife, and HOPE she will read it with an open, objective mind.

 

I did a quick perusal of the Alzheimers info and can already see that some of the early stages seem to be coming in to play for me. I will definitely discuss with my neurologist, who has been very, very open and supportive throughout the entire nightmare.

 

Hugs, WALTER