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Cluster Headache Help and Support >> Cluster Headache Specific >> Confused....
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Message started by debpa on Apr 15th, 2009 at 9:35am

Title: Confused....
Post by debpa on Apr 15th, 2009 at 9:35am
Ok gang.  I need to pick your brains about something.  My husband, Barry, went into cycle on November 25 of last year, has been on a variety of meds. and the O2 continues to work like a charm.  He has only had one headache in the last four weeks, is currently taking lithium and topamax.

Heres the thing....he is constantly complaining of pressure behind his eyes and a "gritty/sandy" feeling in his eyes.  He had a full workup at the eye doc. yesterday to rule out anything else and all the tests came out fine except that he has dry eyes.  Is currently using eye drops prescribed by the doc. but they don't seem to be helping much.

He says that the pressure lets up from time to time but only stays away for a short period of time and then returns.  

He also finally got an appointment with a new neuro. next Friday so we are crossing our fingers that maybe he has some answers.

Has anyone experienced anything like this while in cycle? Barry says the constant discomfort is starting to drive him nuts.  I'm doing my best to keep him calm.  

Thanks in advance......

Debbie

Title: Re: Confused....
Post by Jeannie on Apr 15th, 2009 at 9:51am
Hi Debbie,

I'm not a doctor but what you are describing sounds like a shadow to me.( I was just reading that many doctors are unfamiliar with the term "shadow" and do not realize that Ch'ers experience them.)   It may be that the meds are keeping the HAs at bay but still allowing shadows to break through.  I experienced the very same thing last cycle and am experiencing it now as well.

Excedrine Migraine will sometimes relieve the pain for a while.  An energy drink such as Red Bull will do the trick for me too. Has he tried 02 to knock it out?

Jeannie

Title: Re: Confused....
Post by debpa on Apr 15th, 2009 at 11:04am
Thanks Jeannie.  Barry has tried the O2 occassionally but hasn't had much success with it in relieving the pressure.

I will certainly run the exedrin migraine suggestion and the red bull by him.  Somethings gotta help.  :(

I appreciate your input.

Debbie

Title: Re: Confused....
Post by Jeannie on Apr 15th, 2009 at 11:08am
I hope it helps.  

Jeannie

Title: Re: Confused....
Post by Lefty on Apr 15th, 2009 at 11:32am
I would have to agree with Jeannie and that they sound very much like shadows. I began my cycle in early Feb and I took all the usual big hits, but for the last number of weeks i was experiencing persistent heavy shadows. (constant pressure in and around the eye)

I took another small taper of predesilone  to try and break this cycle up as they were really beginning to stress me out.( I Take my last 15mg tomorrow). I was also experiencing all other sorts of other pains down my left shoulder which at the time I thought were related to my shadows but now I realise were stress related.  From talking to others and i would be inclined to agree that stress can some how prolong these shadows.

I know it's hard because they can suck the life out of you....! but if he can try and remain stress free and use the various treatments that help such as 02,Red Bull,Really strong coffee even a vigorous work out on my cross trainer can sometimes give me some relief. Although in others it can make their situation worse. Debbie have a Look around the site their is a wealth of information in dealing with all level of attacks and hopefully you will find one that offers relief for your husband .


Lefty...!

Title: Re: Confused....
Post by DennisM1045 on Apr 15th, 2009 at 12:26pm
Hi Debbie,

I'm going to join the chorus here and say it's shadows.  I spent a lot of money on eye exams before I got diagnosed and then found this site.

His description fits what I experience as shadows to a tee.  They can go on for weeks.  Often they preceed the start of a cycle for me and are ever-present during one.

When it all gets too much I take Excedrine Migraine.  It'll knock them down for a while at least.  You need to watch that stuff though as it'll eat the lining of your stomach.  Don't exceed the recomendations on the box.

Lastly, I want to thank you for taking such good care of my clusterbrother.  You supporters are the rock to which we cling in the storm.

[smiley=hug.gif]

-Dennis-

Title: Re: Confused....
Post by ClusterChuck on Apr 15th, 2009 at 12:41pm

debpa wrote on Apr 15th, 2009 at 9:35am:
I need to pick your brains about something.


Sorry ... I can't be of any help ... Every time I have gone in for an MRI, when the results come out, to Neuro looks at it and says: "Nope ... nothing there ..."  So, I guess I don't have a brain to pick ...

BUT, if I had a brain, I think I would go with the consensus .. Shadows.

I hope they give him a break soon!

Brainless Chuck


Title: Re: Confused....
Post by icedragon on Apr 15th, 2009 at 12:54pm
Hi Deb,

This is only a guess, but does your husband use a humidifier when he is using the O2?   Is it possible the dry airflow is causing his eyes to become dried out?

Otherwise, I would also say the pressure is from shadows...

Thomas

Title: Re: Confused....
Post by Garys_Girl on Apr 15th, 2009 at 1:17pm
Please have hubby check with Doc or Neurologist.  Gary was told he was not to take any NSAIDs (non-steroidal anti-inflammatories, like excedrin, tylenol or aspirin & etc.) while on lithium.

Laurie

Title: Re: Confused....
Post by debpa on Apr 15th, 2009 at 1:40pm
Thanks to all for the input.  I agree, Laurie, we will check with the neuro. first before taking the exedrine.  


Quote:
BUT, if I had a brain, I think I would go with the consensus ..


lol Chuck....I think you have scarecrow syndrome.  (He really didn't need the Wizard after all.)

Thanks again.


Title: Re: Confused....
Post by Racer1_NC on Apr 15th, 2009 at 1:45pm
4-way nasal spray.....  ;)

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