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 Headaches as a symptom of LBD 
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Joined: Sun Feb 27, 2011 11:56 am
Posts: 3
Post Headaches as a symptom of LBD
Unfortunately I have several other clinical symptoms of LBD, so it seems likely to me that when I go next month for an evaluation the diagnosis will probably be either probable LBD or possible LBD. It seems like the medical types all want to do a duck and weave on this stuff.

My issue that I would like input on is headaches. I have tremors, gait disturbances, cognitive dementia, hallucinations, alternating consciousness, etc. But I also have constant headaches that are sometimes so ferocious that they leave me in tears. I always have a headache. The question is how bad is it at any given time. No medication seems to help. Migraine medications don't seem to help; NSAIDs and even hydrocodone doesn't help. Right now I am on Topiramate and that does not seem to be doing much.

Sleep is a huge variable. If I sleep badly the headache is much worse. If I sleep well, the headache stays down until later in the day. When my sleep is badly disturbed, the headache becomes a killer. I know I have major sleep issues with PLMD and REM sleep disorder.

What have others experienced with headaches and LBD?


Fri Jun 24, 2011 4:34 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Headaches as a symptom of LBD

Sorry to read of your symptoms. I have not heard of headache as being a symptom of LBD. Certainly many people have headaches. It would stand to reason that many people with LBD will have headaches as well.

There are many types of headaches and many causes of headaches. Some neurologists even specialize in headaches. I hope you can find someone like that near you. Or a pain specialist.

Besides the connection with sleep that you mention, another LBD-related symptom (that some, not all, have) that is associated with headaches is orthostatic hypotension. OH can cause coathanger pain, which includes a headache.


Fri Jun 24, 2011 6:13 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Headaches as a symptom of LBD
I think, also, that sleep apnea can result in headaches.

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Fri Jun 24, 2011 7:27 pm

Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headaches as a symptom of LBD
I do find a connection to headaches and sleep…

but, fortunately for me….headaches are a minor player in my issues in terms of severity….

most of my headaches, could be described as dull….and all most constant...

rarely I have a really horrible one….but, they do occur…usually with flu symptoms

Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years

Fri Jun 24, 2011 10:28 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Headaches as a symptom of LBD
Of course I can't speak for myself but I can tell you in my husband's LBD, the very first thing that I noticed many yrs prior to his DX of LBD was he had a constant headache, it was investigated as Robin above has suggested and we never really recieved a conclusive reason ans I have always thought it was somewhat related but have never found any information to support that .

I do hope you are able to get some answers for yourself.

Irene Selak

Sat Jun 25, 2011 7:39 pm
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