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 Persistent headaches 
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Post Persistent headaches
Jerome has been having the same headache daily for about five months. He has had CTs and MRIs of the brain and they show no tumor or other structural cause for the headaches. There have been no changes in his medications. But nobody seems to be concerned about the daily headaches (and they are not tension headaches).

Was giving him extra-strength tylenol every day (didn't help much anyway) until I read about the critically dangerous (and often very unexpected) results of acetaminophen poisoning and liver damage.

They recently diagnosed that Jerome has a benign liver tumor (hepatic hemangioma -- a "clot" of blood vessels). Lots of people have them and just don't know it. He is not jaundiced or showing any other major signs of liver issues ... which leads to another mystery symptom ...

Jerome has been terribly nauseous almost every day for a few months as well -- pepto helps but it causes problems at the other end, if you know what I mean, so I only give it to him when the nausea is terrible. His appendix was removed many years ago, so it's not that.

This can't be right, and I don't know what to do or ask of the doctors. Anybody else seen this with their LO, especially the headaches?

We know from his MRIs that his brain is shrinking. I'm starting to wonder if that might be a painful process (like growing pains in reverse, but in the brain). How crazy is that?

Thanks for any advice!

Renata (and Jerome-in-Heaven)

Thu Sep 04, 2008 3:53 pm
When you mentioned headaches, it made me think the the headaches were the very first symtom I can recall, Long before the DX of LBD my husband came home one day with a headache that just never went away I mean several yrs,he had all kinds of tests and nothing showed with any of them but if you ask me I will always say it had something to do with his disease.
I hope you are able to find the source of Jerome's.

Thu Sep 04, 2008 4:43 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)

This doesn't sound like fun. Does Jerome have OH (orthostatic hypotension - BP drops upon standing)? If so, that would be an explanation for the headaches.

Or maybe Jerome's intake of water has drastically dropped so he's actually getting a headache from dehydration?

You might speak with an MD about the possibility of liver damage with acetaminophen. The MD may suggest alternating between Tylenol and Motrin.

Could the (benign) liver tumor be causing the headache or the nausea?

I know you said that there haven't been any med changes but is nausea a side effect of any of Jerome's meds? Have you taken him to see a GI doctor? Is he bloated? You might ask an MD about Zofran, a very expensive but very effective anti-nausea medication. (Don't let anyone talk you in to Phenergan or Reglan.)


Thu Sep 04, 2008 6:42 pm

Joined: Thu Jul 03, 2008 11:05 am
Posts: 150
Location: Raleigh, NC
This is a rather elemental possibility for the headaches and comes from my own experience rather than LBD. Could it be his eyes? When the eye doc gave me the wrong RX, I spent several long weeks thinking I had a constant migraine. Maybe the LBD associated eye problems could have similar effects. Unfortunately, getting a proper eye exam could be difficult or impossible.

Thu Sep 04, 2008 7:50 pm

Joined: Sat Sep 22, 2007 5:53 pm
Posts: 90
Location: Texas
My father in law (now deceased) used to have excruciating headaches. He had an enlarged heart and with medication he eventually got rid of the headaches.

Fri Sep 05, 2008 9:18 am

Joined: Wed May 30, 2007 12:09 pm
Posts: 114
Come to think of it, mother had lots of tests due to headaches she had long before DX of LBD. Nothing was found. Recently she has complained of headaches nearly everyday.


Caregiver to 84yr. mother w/LBD & 83yr. dad w/PD

Sun Sep 07, 2008 3:04 pm

Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
Mother gets relief from massage- you might try that or a DO or chiropractor. Her neck muscles get very rigid and seem to cause the headaches. Some of the muscles rigidity that comes with Parkinsonism


Thu Sep 25, 2008 2:25 pm

Joined: Sun Feb 27, 2011 11:56 am
Posts: 3
Post Re: Persistent headaches
At this point I have not been formally diagnosed with LBD, but I'm scheduled for an evaluation to that end next month. Unfortunately I think it is probably likely that the result will be either probable LBD or at least possible LBD.

I too have had headaches that have been characteristic of my illness for several years. They never seem to go away. Sometimes they are awful. Most of the time they are noticeable, but bearable. The pain is in my eyes, and in the base of my neck. Sometimes it is in my temples and across the top of my head, but usually my neck and eyes. It is constant. It cranks up or tapers off, but it is always there. I would be very interested to know if others with LBD have similar experience with headaches.

Fri Jun 24, 2011 4:01 pm

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Persistent headaches
Linc, I don't have any information on headaches. I just want to welcome you again. I hope that the evaluation next month leads to some useful treatments for you.

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

Fri Jun 24, 2011 4:27 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Persistent headaches
Thanks for starting your own topic on headaches. I've responded to you over there.

Fri Jun 24, 2011 6:14 pm

Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Persistent headaches

dehydration…yes…I stay one step ahead of dehydration….most of the time…been severely dehydrated a handful of times…

I can tell the dehydration headache when it is getting to a better get control of the dehydration time…. (I was just thinking…that is probably why it is so common for me at flu time…)

maybe some of the dull constant headache has to do with the constant dehydration issues for me?

I do have the thermal regulation issue….once I start sweating…I sweat out if I don't take drastic measures before there is nothing left to sweat out….

note: I had dehydration headache and issues on my recent trip to Disneyworld….it was worth every moment of pain…

also…eyes…of course my eyes are declining like most people over 40….but…when other symptoms kick in…I see double…double vision….one eye double vision….both eyes….(I know…not possible…LOL)

my symptoms…are like constant torture….that someone turns the knob up one more notch everyday….everyday…

I had been thinking the constant headache was just an overload reaction to all the constant stimuli…sort of an overload reaction...

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 10:41 pm

Joined: Wed Mar 02, 2011 1:04 pm
Posts: 252
Post Re: Persistent headaches
I'll chime in - welcome Linc......hope you have some answers soon....

I have headaches - sometimes like an icepick in a single place to the center of my brain on the right frontal side - rest of the time low-grade tension type headaches with the neck and shoulder tightness that never goes away...

And Craig I have this temperature regulation problem really badly - I suspect it was one of my first symptoms a decade ago although we attributed it to my thyroid....I sweat too until you think I couldn't anymore and then I get chills - all within an hour....I hate the sweats, I usually feel pretty sick when they are happening and they happen a lot in my sleep...

How do you stay hydrated? just lots of water? I am doing that but I wonder if it's enough with the aricept and it's wonderful side effects....

Take care all....


First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........

Sat Jun 25, 2011 1:25 pm
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