After over 2 cluster free years I'm back in a cluster cycle.  DAMN, DAMN, DAMN.  I'm heading out of town for five days Wed.  so no Oxygen for a week or so it looks like.  I'm going to try to see my doc and see about getting a scrip for steroids which sometimes abort a cluster cycle for me if taken early.   Second late night headache in a week.  Was in denial about the first one since it wasn't as severe as my clusters have been in the past, but of course I get more 'regular' headaches during a cluster cycle as well so that's what the first one was.  

I've got a weird cluster sympton for you.  Anybody else have trouble 'finding words' when in a cluster cycle... not worried about it during the actual headache attacks, but  I do much writing for work, and for the last few weeks I've had trouble coming up with the terms I've needed or wanted on occasion.  I had this symptom once before and blamed it on the topomax I had been prescribed.....  Cluster is abating after only a half hour -- thank GOD!  

Thanks for being here everyone!
David

Sorry you are back in cycle David.  You are one on many right now. I was PF for six years.

I notice that my quick wit ain't so quick.  Could be the meds, could be the beast, not sure but I do notice it.

                            Best of PF luck to ya
                                   JPC

I hate to say this but yes Clusters have caused me to lose some mental depth. It does come back but when it's not there when I want its quite alarming. Forcing me to think slower than usual.

Part of me wanted to not answer this but over 20yrs. of CH have shown me the symptom you speak of. Not a lot but from time to time. Meds. do add to it for me. In the end I have learned to cope and it is overcome. You will too.

Best wishes, Don

[size=16]

A temporary condition not unlike the memory lapses which come with aging.

Curr Pain Headache Rep. 2005 Apr;9(2):109-12.  
Cognitive processing in cluster headache.

Evers S.

Department of Neurology, University of Munster, Albert-Schweitzer-Str. 33, 48129 Munster, Germany. everss@uni-muenster.de.

[Edited for length.] In neuropsychologic evaluations, a reversible decline of memory processing was detected during the cluster attack, but not between two attacks. Long-term observation revealed no progressive cognitive decline in cluster headache patients over the years. With regard to personality changes, a liability susceptibility to anxiety disorders and to hypochondriasis, but not to mood changes, has been described inconsistently. All changes in alterations of cognitive processing in cluster headache are demonstrated to be mild and do not relevantly contribute to the clinical picture of this disease.

Publication Types:
Review

PMID: 15745620 [PubMed]

I've noticed that recently (come to think of it since the start of this cycle) I've been strugaling badly to find words on occasion, and even stammering or stuttering through sentances. I hadent atributed this to CH but now u mention it... My family have pointed out that I seem to have slowed down with regards my verbal capacity. I wonder how widespread this is?

B/w luke

Thanks everyone for your good wishes.  Bob-- especially appreciate your reassurance that this isn't a progressive decline!    Wishing Pain Free days and nights for all of us.

David

This is one of my most vexing symptoms of CH - and how I know I am getting ready to have a rough night.  I generally notice this between and about an hour before attacks when I have shadows and am trying to function through them.  

As a person who writes and speaks in front of groups for a living, it is a very obvious and inconvenient symptom.  I will be in the middle of making a point or laying out a distinction and suddenly, I can't find the right words.  I will say words that may sound similar but have a completely different meaning or I just flounder and can't find the right word at all.  Sometimes, I totally lose my train of thought mid-point and have to backtrack. It is very upsetting and makes me feel like an idiot.  People are usually patient with it happening once or twice but when it happens five to ten times in the course of an hour, it is just time to go home.

When the cycle ends, it can take a few days to feel like I am back to normal but when I am, my command of the language returns as well.  This issue may have something to do with meds for some, but I noticed this symptom before I was diagnosed and was not on any prescription meds.

Kushka

I've always chalked this up to sleep disruption myself.  The rougher the cycle the less sleep I get the less sense I make.

I do notice that it goes away within weeks of the cycle ending.

-Dennis-

I agree with Dennis- CH cause major sleep disruption for me since I get the nightly attacks while in cycle.  This causes major irritability for me as well as not being up to par in my mental capabilities in or out of cycle.  

But, when taking verapamil , I notice this symptom is even more pronounced.  During the period that I was in cycle last and I took verap, I was in 'survival ' mode.  About the only thing I could really do was just get thru the day...  Sometimes I wonder how I kept my job considering just how 'stupid' and 'blank' I was.

Kelly

Are you still ON topomax?


   that would definetly answer the question for you.   Dopymax is notorious for this kind of thing.  

Yes, must say I have noticed this also, even when I have had adequate sleep. I am normally a pretty quick wit and I do a fair amount of public speaking as a part of what we do around here. I would say that WITH adequate sleep, my presentations are about 70 % of normal in cycle, and without adequate sleep definitely not that high. Like other posters have suggested, I struggle for the right words, even if I've done a killer job on the presentation in question when I am out of cycle.

Intriguing question David...I find just the opposite...

When formerly in cycle (episodic) and currently when in "high" cycle (chronic) my writing and even speaking improves. I do a fair amount of it for my employer and am considered good at it (it's a surprise to me, nothing I ever write seems good enough).

Words and thoughts just flow. I have thought about this extensively and and concluded it has WAY less (if anything) to do with CH and way MORE to do with the exhaustion and fatigue which accompany the beast. Just don't give a damn anymore and the internal censor is subdued. That there is personality vs condition. We all just react differently.

Guess I just explained why you occasionally see "stories" here on ch.com from me. I simply feel compelled...and I love telling stories to people I love. It is therapy for me, and if they have any meaning for
those here...well then, all the better...and SCREW the beast!

Best,

Jon

Sorry the beast is back for you too.

I don't know about "finding words", but everything SLOWS DOWN for me physically and mentally.  When I wasn't on Verapamil during episodes, I was never this bad.  My BP is low to begin with.

I've slept through the night for a few days, but it hasn't helped.  I'm still beat.  Depression, anxiety, stress, etc., must be big part of this too.  So I do get slow & stupid during episodes then back to normal when I'm off all the meds.

I'm on topamax (have been for about 10 years) so it would be easy to blame the meds, BUT I had this problem BEFORE the topamax. Age? Probably to some extent. HA? probably to some extent also. Meds? Probably to some extent also.

I've learned to just say "senior moment" and let it go at that. Someone usually fills in the word I lost. Yes, it's aggraviating, but not fatal (well, at my AGE I can get away with it).

When writing I use a theausus (if I can come up with a word that's close).

sometimes I'm sharper than at other times (low cycle) but I do use a lot of post-it notes.

Hugs BD

Just a quick question for anyone who has posted here so-far or has noticed this "loss of words thing". One of my flat-mates who is studying Neuro-Psychology pointed out that it would be interesting to see if this seemingly relatively unusual symptom is more prevalent in people who's CH's are left or right sided. I for one am a lefty but would be interested to hear from anyone else!

PFD

Luke

I'm a rightie, and never noticed the symptom.

I usually drop about 10 IQ points during a cycle and get about 8 of them back.  So the older I get, the dumber I is. :-/

I been dealing with the beast for the past 15 years, every year I always think that maybe I'll not have to deal with it, so much for that.  It's a good thing the weather is mild in Gettysburg these days, that way when I wake up at 2am from the Beast, I can walk around the back yard to cool down from sweating so much. Has anyone been able to tell why we are so lucky to have this yet?

Hi ppattya here,  first time on site.  I just got dx after years of mis dx and horrible unexplainable pain. but the "can't find the word' thing is not 'weird" to me.  I think its like a tip of the tounge type of thing. I know what I want to say but can't say It for a little while then it comes back to me.  and I have a hard time remembering where things are.  forget my husbands name where the store is where my wallet is and what was i doing    I say that my brains hurts and it just quit working if you find out more about this please email me at pattyroth13@yahoo.com

rightie- and stupid in cycle

Lefty AND righty ... and just plain stupid ALL the time.

Rightie...and drug-free. I can't blame my slower thought process or loss of words on drugs.  I've always chalked it up to sheer exhaustion since I barely get any sleep during cycles and the "normal" HA that persists throughout the day that just keeps me in a fog.

I'm sorry....I forgot the question......

Hi there. I am right handed. I experienced mixing words up while talking as well as writing for the last two cycles. My Dr. recomended I supplement with Pregnolone. It helps as long as you continuously take it. I personally feel it is a form of anxiety. It only happens when I feel overwhelmed and I am trying to do too many things at the same time. Slow down.

Rina wrote on Nov 9^th, 2008 at 3:28pm:

Hi there. I am right handed. .

Did you mean right 'headed'?

BTW if you look at the symptoms of some of the meds that many of us take ie Verapamil you will notice that there are side effects for some that relate to memory.

Hey there,

I stammer and lose words when I'm having a series of hits. It's also one of my tells - I know to get a coffee/red bull when the words don't come out! I don't get any nightime hits either since taking melatonin but still get the stammer, so I couldn't claim it was sleep deprivation for me personally.

Like Kushka, I find it so frustrating because currently I'm in training and development so stand in front of people teaching for a job. It becomes so difficult to do and the more flustered I get, the worse it gets. I have never had a stammer previously, so can only attribute it to CH.

Em
x

Allen_A wrote on Nov 9^th, 2008 at 8:13am:

I'm sorry....I forgot the question......

;D

Gary is drug free, right-headed, right-handed and can't find words.  And we also write for a living.  Thankfully we work together, so I've got the words when he doesn't!  

Laurie

My husband Chris (who never posts, I do it for him) has only had one cycle but this was definately a symptom he noticed. We figured between the headaches, the verap and the lack of sleep it could be a result of any or all of these.
He is right handed...his CH were on the left side...