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New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Headaches and Reading
(Message started by: jessipo on Nov 22nd, 2004, 1:56am)

Title: Headaches and Reading
Post by jessipo on Nov 22nd, 2004, 1:56am
I've found that since I started having the migraines and clusters (I often get both at the same time--it sucks!), I can't read books.  I can read online and I think it has something to do with looking straight ahead.  Also, I don't have to move my eyes from side to side which is extremely painful to me.  Does anyone else experience this?

Title: Re: Headaches and Reading
Post by nani on Nov 22nd, 2004, 8:35am
I can't do anything during a CH, except pace, rock and moan. My eyes are sensitive to movement after one though.

Title: Re: Headaches and Reading
Post by Ruth on Nov 22nd, 2004, 9:39am
Good morning,
I love to read, but do not read while in cycle. I also wear glasses and have to use them to read and they are uncomfortable to wear any longer than I have to maybe the pressure above the ears. Who knows, not me.

Ruth

Title: Re: Headaches and Reading
Post by jessipo on Nov 22nd, 2004, 11:40am
Nani,

I know what you mean about the pacing, rocking and moaning.  I bang my head too, which I'm sure is not healthy, but the pain I get from banging my head kind of covers up the pain from the cluster.  I feel like I'm going insane when I have a cluster.  I also wanted to kill an ER doc once, because he was such a b*strd about meds.  You know, he didn't want to give me anything to give me relief?  I know the meds don't take away the cluster, but let me tell you that Dilauded does make it go away, even though I have to have a huge dose of it.  I've had morphine for it before and that didn't do a damn thing. *sigh*

Title: Re: Headaches and Reading
Post by nani on Nov 22nd, 2004, 11:45am
I got 2 shots of morphine my last ER visit. (the dr said he knew it wouldn't help the CH, but he thought I'd at least get a little buzzed). NOTHING. No pain relief or buzz. Many of us have banged our heads. It's part of CH. Go to a neuro and in the meantime, if you end up back at the ER, ask for oxygen. It aborts for many of us. It' needs to be 100% oxygen with a non rebreather mask.

Title: Re: Headaches and Reading
Post by sandie99 on Nov 22nd, 2004, 11:47am
I can't concentrade on reading when I have CH. I can read short articles, if I must, but books are a no no to me then.

Title: Re: Headaches and Reading
Post by jessipo on Nov 22nd, 2004, 11:59am
Nani,

Morphine didn't work a damn for me either.  But, guess what?  I have a migraine cocktail that I request EVERY time.  It's dilauded (2-4mgs, depending on the level of pain, and most docs won't exceed that), tordal (one dose, but they *might*, operative word being *might*, give you a second if you're still in pain, and phenergan (25-50mgs, you want it to knock you out).  

Tell the nurse that you're allergic to morphine, codeine and demoral, so they'll give it to you.  Dilauded is a drug that's 100 x as powerful as morphine, but doesn't have the same kind of rebound or addictive properties as morphine which is really great.  I've only had this cocktail not work all the way for me once.  

Here's what I say about the drugs that I'm *allergic* to.  Codeine made me have a seizure when I was a child (that's actually true); Demoral gives me horrible, scary hallucinations (that's true to); and Morphine makes me so irritable that I get really aggressive (and that's also true. If you tell the nurse this one they won't give it to you for purely selfish reasons--they don't like to have to deal with aggressive, angry patients, lol).  Hope that helps.

Unfortunately the O2 doesn't work on me at all.  I used to ask for that first, hoping, you know?  But it didn't work so after the first 3 times, I stopped asking for it.

Title: Re: Headaches and Reading
Post by writer on Nov 24th, 2004, 6:54pm
In my one trip to the emergency room through the years, a shot of Demerol delivered such nstantaneous, blessed relief that I've never forgotten it.  Q: have you asked for that?

Writer

Title: Re: Headaches and Reading
Post by Redneck on Nov 25th, 2004, 10:26pm
When my CH started in the early 80's, I read every afternoon. It seemed that reading triggered the headaches. I even asked if i needed new glasses. I still love to read, but it doesn't seem to trigger as bad as then. I didn't understand it then, and I still don't now.

Anyway in answer to your question, I have and I still do sometimes.

Title: Re: Headaches and Reading
Post by Apple on Dec 4th, 2004, 10:39am
I have something similar. I can not read books for long periods of time in a row. I can read for an hour in a book and maybe revisit the book several hours later. If I read a book two hours in a row, I'll get a migraine. So, I'm down to two...maybe three hours a day (max) in intervals when it comes to book reading. I always have to be extremely careful when book reading. I once landed in the ER trying to read a great novel. Stupid!   I have to pace myself and plan. However, I can stay on the computer for about four hours in a row and get away with it.  I don't understand why there is such a big difference.

Title: Re: Headaches and Reading
Post by jessipo on Dec 4th, 2004, 3:32pm
Yeah, "DURING" a cluster, i can't do anything but pace, bang my head and rock.  But, I mean at other times.

Anyway, my husband recently read that there is a difference between reading online and reading in a book.  But they don't know why.  I wonder if it's because you're using different parts of the brain.  Or if it's the fact that you don't have to look down at the book, wheras online you're looking straight ahead.  Hmmm.  Hope they do more research on this.  It's interesting to know anyway....

Btw, thanks for all the responses.  Some of them were helpful and some of them comforting, but all were appreciated. :)

Having a cluster-free day.  :)

Jessipo

Title: Re: Headaches and Reading
Post by don on Dec 4th, 2004, 4:41pm

Quote:
Tell the nurse that you're allergic to morphine, codeine and demoral, so they'll give it to you.


Drug seeking behavior.

Not something I would want Doctors and Nurses associating with cluster headache suffers.


Quote:
Here's what I say about the drugs that I'm *allergic* to.  Codeine made me have a seizure when I was a child (that's actually true); Demoral gives me horrible, scary hallucinations (that's true to); and Morphine makes me so irritable that I get really aggressive (and that's also true. If you tell the nurse this one they won't give it to you for purely selfish reasons--they don't like to have to deal with aggressive, angry patients, lol).



Got your story down pretty good.

Title: Re: Headaches and Reading
Post by jessipo on Dec 6th, 2004, 3:10pm
I think you may misunderstand me, Don.   I have been through this so much and have experienced so many of the drugs they gave me that I know what works for me.  Why should I have to go through every single ineffective drug, before they finally decide that they should try the dilauded.  By then I'm completely doped up, agitated, having hallucinations and then finally get relief?  I'm only saying that if there are drugs that are ineffective, let the doctor know what it is and why.  Those were *my* symptoms from the drugs that I was given.  Doesn't mean they were anyone else's and I guess that I didn't explain it that way and I should have.  My apologies.  But, if the drugs don't work for that person, she needs to make sure they try something else and I was suggesting a drug that really worked for me.

I have another suggestion now.  When I had to go to hospital last time, the doctor told me that there was a non-narco drug that he has seen work on clusters.  What a relief, right?!  So, I told him to please try it first, then if it didn't work we'd go with what does work.  It is called Inapsine.  NON-NARCOTIC!  Can you believe it?  And it gave such blessed relief within 10 min.  And the best part is that the next day I didn't feel all doped up and groggy like I do with the dilauded.  So, now I will request that.  But, I recently asked my doctor about it and she told me that alot of times the er's have to use what the hospital provides for them and that's all they have.  I didn't know this, but it's good information.

So, I'm sorry for the misunderstanding.  I did not mean that particular thread for use by everyone who needs help.  Just those who've been through every drug in the book and have not found any relief yet.  


Title: Re: Headaches and Reading
Post by nani on Dec 6th, 2004, 3:15pm
http://www.psyweb.com/Drughtm/droper.html

Title: Re: Headaches and Reading
Post by becky8 on Dec 6th, 2004, 3:22pm
Jessipo,
I have only been to the ER twice luckly, anyway the first time I went they game me tordol and I waited and cryed and waited for it to work, then the ER doctor said he couldn't believe it wasn't working so they added dilauded and phenergan and I was knocked out for 21 hours straight. When I FINALLY woke up I felt great!!! No rebounds or anything. But I am not about going to the ER........I am about NOT having to go to the ER. But you are right about those drugs working good (for me at least) probably didn't hurt I was starting to get crazy there from all the waiting!!! But again I like to stay home peacefully and PF!!!!(if i'm lucky!)

Title: Re: Headaches and Reading
Post by don on Dec 6th, 2004, 7:36pm
Thank you Nani.

So far Jessipo I dont see where you have mentioned using any proven CH meds other than narcotics and pain relievers.

Title: Re: Headaches and Reading
Post by jessipo on Dec 10th, 2004, 9:15pm
Hi Don

At home I have Imitrex, maxalt, fioricet for rescue med.  For the clusters, sometimes the Imitrex will nip it in the bud. ( I also have chronic migraines from an accident I was in).  

I would love, love, love to hear about it if there are more.  Then I could bring it up to my doc.  Anything to keep me out of ER and out of having to get shots of the strong narcos would be fantastic!

Any suggestions?  I am eager and open to hearing about it.  Maybe my neuro isn't doing his job right or as well as he should be if there are other tx's out there that could help me at home.  Oh, keep in mind that the O2 did NOT work for me.  Nor did the drinking cold, cold water a bunch of times.  And I do watch my diet to avoid any trigger foods (ie preservatives, chocolate, yada, yada.

Thanks a bunch.



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