Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        Cluster Headache Help and Support >> Cluster Headache Specific >> strange symptoms (maybe shadows?)
        
(Message started by: plungerjoke on May 14^th, 2008, 2:16am)

Title: strange symptoms (maybe shadows?)
Post by plungerjoke on May 14^th, 2008, 2:16am

I've had 3 (perhaps 4... the period before I was officially diagnosed is a little fuzzy) bouts of episodic cluster headaches... the last one "ended" around january 08.

i say "ended" because ever since i've had what seems to be called shadows with considerable frequency. they're located in the same area of my head, and hurt a little bit, but are really very bearable. I saw a neuro a few weeks ago, and he examined me and heard my symptoms, and said nothing about anything other than clusterheadaches, but this is kind of worrisome. In the past, when my cycles were done, I forgot I had cluster headaches until they came back and beat me into the ground again. This time, I feel it every day but it just never becomes the white hot pain .

could this be something other than cluster headaches? Its always unilateral, and always in the same region as the clusters. I'm just worried that I could have developed a brain tumor or something? I realize a doctor is the only person who can tell me if this is the case or not, and i plan on seeing one very soon, but I was just wondering if anyone else has similar symptoms even when more or less pain free?

thank you, and sorry if this is confusingly worded...
-kurt

Title: Re: strange symptoms (maybe shadows?)
Post by starlight on May 14^th, 2008, 10:52am

plungerjoke,

I went 19 yrs or so with episodic and no sign of the headaches in between cycles but after my last cycle I get regular shadows--it is freaky and I don't know the explanation for it. I doubt that you have a brain tumor--probably shadows. For me things that help is "sleep hygiene" which is going to bed at same time and getting up at same time every day. Exercise helps too. But other than that I just kind of accept them--I would say if you can don't worry about them too much b.c that makes them worse. Good luck to you, Star

Title: Re: strange symptoms (maybe shadows?)
Post by Jean on May 14^th, 2008, 11:37am

Hi Plungerjoke,

I was having lots of shadows that felt just as you described. Someone here suggested that I try an energy drink such as Red Bull or Rock Star to help knock them out. It worked for me!

Take Care,

Jeannie

Title: Re: strange symptoms (maybe shadows?)
Post by DennisM1045 on May 14^th, 2008, 12:28pm

I regularly get shadows between cycles. The occasional rogue hit will come along too just to make sure I don't get too comfortable.

I've found that this happens more frequently as I age. In the last two years I haven't gone three weeks without at least one day of shadows.

It's still very different than being "in cycle".

Just my [smiley=twocents.gif]

-Dennis-

Title: Re: strange symptoms (maybe shadows?)
Post by judyjudyjudy on May 14^th, 2008, 12:32pm

Shadows are very common...I have "shadow clusters" in between "beast clusters" regularly. I find that 800 mg of ibuprofen helps with shadows, which of course, makes the beast just laugh.

Title: Re: strange symptoms (maybe shadows?)
Post by LeeS on May 14^th, 2008, 1:10pm

Hi Kurt

Everyone's mileage varies of course, but I only tend to get shadows whilst in bout. There have been anecdotal reports of CH morphing into other primary headache types (and vice versa). Accordingly, if your headaches are continuous, it could be a form of hemicrania continua (HC).

HC is a strictly one-sided headache that is continuous but generally waxes and wanes in intensity. It is generally defined as mild to moderate in severity, but with more severe exacerbations there may be accompanying same-sided cranial autonomic symptoms as seen in CH and other TACs. These exacerbations can last from 20 minutes up to several days.

HC shows a complete response to a medication called indomethacin. This can be used orally as a diagnostic test; however, intramuscular indomethacin (known as the "Indotest" ) has the advantage of much more rapid diagnosis.

Alternatively, they could just be shadows. As for the tumour thing, it is reassuring to know that very few people with brain tumours have the symptoms of headache alone, but if in doubt, check it out.

-Lee

Edited for inappropriate smiley.

Title: Re: strange symptoms (maybe shadows?)
Post by Brew on May 14^th, 2008, 2:51pm

on 05/14/08 at 12:32:57, judyjudyjudy wrote:

I find that 800 mg of ibuprofen helps with shadows...

That's a lot of ibuprofen. You doing this multiple times per day for many days in a row?

Title: Re: strange symptoms (maybe shadows?)
Post by thomas on May 14^th, 2008, 3:28pm

on 05/14/08 at 12:28:44, DennisM1045 wrote:

I regularly get shadows between cycles.

Me too. I use excedrin migraine and caffine to treat them.

Title: Re: strange symptoms (maybe shadows?)
Post by Karla on May 14^th, 2008, 4:55pm

Hey Brew, I have been taking 800mg at a pop for years dealing with my endometriosis. I was told by my neuro to take 800mg of ibuprofin and 2 extra strength tylanol at the same time (one acts on kidney the other liver) to combat shadows and low level ch hits. You can take 800 mg a day 3x a day indefinetly if you have to.

Title: Re: strange symptoms (maybe shadows?)
Post by barry_sword on May 14^th, 2008, 7:18pm

I am out of cycle right now but am having daily shadows, anywhere from one to having six or more and it sure sounds like the same feeling as what you described.

I now never let my guard down, because the shadows continue to remind me of the CH's daily while PF and out of cycle. :(

I get on the o2 when my "shadow" starts to feel like a hit is lurking and that has worked every time so far. :)

Hope this helps you in some way.

Barry

Title: Re: strange symptoms (maybe shadows?)
Post by judyjudyjudy on May 14^th, 2008, 7:49pm

800 mg ibuprofen is just the Rx strength.

Title: Re: strange symptoms (maybe shadows?)
Post by Brew on May 14^th, 2008, 7:56pm

That may be Rx strength (or you could just take 4 200mg over the counter tabs), but it's still way too much for my comfort level.

Title: Re: strange symptoms (maybe shadows?)
Post by billyjoe on May 14^th, 2008, 9:09pm

I have the same experience. Cluster is over but the shadows continued. After MRI's showed nothing ;) I started taking Gapapentin. A low dose has worked real well for me without any side effects. Doc never labeled the problem, but it's working well. Not sure why it started after my last bout. Good luck.

Title: Re: strange symptoms (maybe shadows?)
Post by barry_sword on May 15^th, 2008, 8:06pm

Shadowing right now, neck is warm on Clusterside, right eye leaky, right sinus plugged, but staying as a shadow, not a hit.

Not dramatizing, but want to share what I am experiencing out of cycle at this moment, and it is a daily reminder several times a day. :P

Title: Re: strange symptoms (maybe shadows?)
Post by debOUCH on May 15^th, 2008, 10:47pm

yep, i am shadowing not too.....and the damn mouth/jaw/teeth thing........but hasnt gone to full blown in a few weeks..nothing like getting hit all night for weeks!!........shadowing ....alot lately,seem to be ramping back up on the pain scale......... but i thought if still shadowing still in cycle?? [smiley=confused.gif] still new at this, still dont understand a lot.....................mild hits too......started jan 30, keeping at bay with just elavil at night.....................and of course red bull! so like am i still in same cycle, day 104!!!LMAO.or chronic???????/ dont know, guess i will just live.....................and c what happens!!! and try not to think about 2 much!
deb