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 Headaches - how frequently do they occur for most with LBD? 

Do you or the LBD person you care for have chronic headaches?
Constant headaches 31%  31%  [ 5 ]
Frequent headaches 19%  19%  [ 3 ]
Occasional headaches 6%  6%  [ 1 ]
Infrequent headaches 19%  19%  [ 3 ]
Never has headaches 25%  25%  [ 4 ]
Total votes : 16

 Headaches - how frequently do they occur for most with LBD? 
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Joined: Sun Feb 27, 2011 11:56 am
Posts: 3
Post Headaches - how frequently do they occur for most with LBD?
I have been diagnosed with Parkinson's but much of what I am experiencing seems closer to the profile of LBD. The onset of the dementia was about the same as the Parkinson's tremor.

I have had a chronic headache that ebbs and cranks up, but never goes away. This has been true for years now. Do others with LBD have a similar experience?

My Neurologists are looking at whether the better diagnosis is LBD. In the meantime I want to understand if there is a frequency of headaches.

I have had issues with driving, word retrieval, fluctuations, executive function and lots of other cognitive problems.

One question I was asked was whether it would make a difference how I was diagnosed. I think it would, but I would like some input.



Tue Mar 01, 2011 7:52 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Headaches - how frequently do they occur for most with L
Hi Linc - I am so sorry about your diagnosis. PDD and LBD are essentially the same thing, it's a matter of which symptoms started first - the physical Parkinson's symptoms, like tremors, or the neurological issues. To me, it would be a moot point.
I'd suggest you read a lot of the postings on this forum for your specific questions. There is lots of info. and support here, and there is a part of the forum for people who actually have dementia. Many on this forum are caregivers (CGs) of people with LBD, PDD, and other neuro. diseases.
To answer your questions about headaches, my dad had migraines when he was much younger, and other types of headaches, but I don't think he was bothered much with them as he got older. I get migraines in "clumps" - I might have 5 in a month and then not have any for a year or two. Hard to respond to your survey question when it pertains to 2 different people, since I have 2 different answers. I also get frequent sinus headaches and sometimes stress-related headaches, although they stopped for the most part when I retired 3 years ago. Yeah retirement!
Again, so sorry for your need to be here. Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Tue Mar 01, 2011 8:30 pm

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Headaches - how frequently do they occur for most with L
This isn't going to be much help to you. Even though Dale was a sleep-walker since his 20s, he has rarely had a headache.

On the other hand, I had sinus headaches for a number of years. They are much less now. The only medication that worked for me was Excedrin - (because of the caffeine).

Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011

Tue Mar 01, 2011 8:35 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Headaches - how frequently do they occur for most with L
In your poll I answered for my husband who has been gone now for some yrs but the very fist thing that started yrs before a DX of LBD was a constant headache that never seemed to completely go away he was treated for a variety of things , TMJ, they even treated him with oxygen, we never really had a reason for the headaches, they did injections in the face muscle and not much really helped ! The headache he had seemed to be in the forehead area !

Irene Selak

Tue Mar 01, 2011 9:49 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Headaches - how frequently do they occur for most with L
Linc, the symptoms of lbd vary a lot from one person to the next. I think it would be hard to pick one or two and say if you have these you do (or do not) have lbd. My LO does not have headaches, either before or after his lbd diagnosis nearly 8 years ago.

Does a diagnosis make a difference? I think it can be very helpful in ensuring that you don't get medicines that can make the condition worse, in guiding the health care providers in what to look for and how to treat it and what research they might tap into, and in providing caregivers with a label so they can find support among others facing similar issues. I find my local lbd support group more useful to me than the AD support group I tried at first (who seemed to be talking about a different world, as indeed they were.)

On the other hand, treatment will be a matter of addressing one symptom at a time, no matter what the diagnosis is. Having a diagnosis could shorten the trial-and-error period for addressing the headaches or the cognitive issues, etc. But there will probably always be some trial-and-error involved. Finding the right treatment combination can be a very lengthy process, but the results can also be very rewarding.

Whatever your probable diagnosis turns out to be, I wish you successful symptom treatment on the road ahead.

Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Tue Mar 01, 2011 10:05 pm

Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: Headaches - how frequently do they occur for most with L
Linc, My husband who has LBD also had years of headaches that were never explained. He took Excedrin, which seemed to help.

Tue Mar 01, 2011 11:48 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Headaches - how frequently do they occur for most with L
I've never seen headaches listed as a common symptom in DLB. I know from talking to those with MSA (multiple system atrophy), they can get headaches from low blood pressure (orthostatic hypotension). OH can cause "coathanger pain," which includes headaches. OH is common in DLB (40%?), so perhaps that could account for your problem??

Wed Mar 02, 2011 1:26 am
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