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        New Message Board Archives >> Jul-Sep 2003 >> I'm not going crazy after all
        
(Message started by: Donna_D. on Sep 26^th, 2003, 3:48pm)

Title: I'm not going crazy after all
Post by Donna_D. on Sep 26^th, 2003, 3:48pm

For the last 5 years I got headaches every April and September. Each doctor I saw diagnosed me as having "seasonal allergies" causing severe headaches and sinus swelling (causing pain in my upper teeth). I told them this was no ordinary headache. Several times the doctors I saw gave me steroid injections (to reduce sinus swelling). I remember saying on more than one occasion that I felt some relief within 30 minutes of receiving the injection (Decadron). The pain usually went away after about 4-6 weeks.

In April 2002 I went to the eye doctor for new glasses. I had just had my son and had heard that your eye can change during pregnancy. I was having severe pain in my left eye and surrounding areas. Headaches like there was no tomorrow. Got new glasses, pain persisted. Took allergy medicine, chalked it up to allergies. Pain went away after another 5 weeks. Rationale: New glasses kicking in/allergy medicine worked/whatever was in the air finally went away/stress of having newborn.

This year the headaches got much worse.

For the last five weeks I have had a headache that just will not go away. The entire left side of my head feels like it is on fire (alternately, a knitting needle being stabbed through my temple and out through my nose). The pain wakes me up in the middle of the night. I go to bed with headaches, I wake up in the morning with headaches. Tylenol, Asprin, Advil, Lortab, Darvocet, Nasal Spray, I even tried ora-jel (compliments of my two kids-ages 3 years and 18 mos). Nothing relieves the pain. My cheek below my left eye turns a rash-looking sort of red.

I sit and rock and cry, and cry and cry. My husband rubs my head and tries to explain to the kids that mommy does still love them she just has a headache right now. Thoughts of Brain Tumor, Bone Cancer (in my cheekbone), Tooth Abcess, Skull Fracture, Ear Infection and that I am just simply going insane run through my head (between bouts of pain). My mother-in-law (who is a R.N. I might add) tells me I just need to get a grip and get over it.

Last night banged my head against the wall and prayed to God to just let me die or get over it (per mother-in-laws suggestion). Woke up again at 1:27am and rocked for another hour.

This morning I picked up one of my mother-in-laws nursing magazines (Advance for Nurses-Sept. 15th issue/ [url][/url]http://www.advancedweb.com ) and found an article about cluster headaches. I sat and cried as I read the list of symptoms and realized for the first time that:

The monster has a name
I am Not Crazy
I am Not being a baby
I am fruitlessly tearing up my stomach taking excessive doses of over the counter pain medication.

and most importantly

I am Not Alone.

This afternoon I found your website. I went through all of the links and read quite a few of the postings. I have learned so much today.

Tomorrow I am going to call a new doctor, get a proper diagnosis (taking article with me with hilites and notes of my symptoms--they will listen to me this time!!) drink lots of water and pray that this series ends soon.

I look forward to hearing from anyone with survival tips. I don't want to spend the rest of my life saying,
"Not now kids, mommy has a headache".

Hopeful,

Donna D.

Title: Re: I'm not going crazy after all
Post by Cerberus on Sep 26^th, 2003, 4:19pm

Donna,

Welcome to the wonderous world of CH, I might suggest that you print some of the info found on the left and take it to the Doc with ya.........Some docs are not real receptive to this as you may soon find out. Unfortunately, you are going to be finding yourself saying that to your kids all too often anyway. No consolation, I know, but, what is....is.

I'm getting a brief respite from my cycle for the moment . I am in my fifth or sixth year now (2nd with official diagnosis and meds). I also suggest that you insist on trying Oxygen to relieve your pain as it has worked for many, Imitrex and Verapamil are also good starter suggestions.

Feel free to post here when you need to vent or some encouragement or advice. It has been a godsend for me and others.

Keep us up to speed on whats going on and how you are doing. The family is welcome here too, especially when they are lost for a solution as to how to help. There is a special section for the supporters of CH.

You are not alone, your story is like many who reside here. None of which do I considder typical.

Be well soon I hope,
Ramon

Title: Re: I'm not going crazy after all
Post by vig on Sep 26^th, 2003, 4:24pm

what do you need for your mother in law?

the back of my hand? a rolled up newspaper?

beware the ignoramouses!
(I tried "getting over it". didn't work for me either.)

but welcome, find some peace and understanding.

Title: Re: I'm not going crazy after all
Post by Prense on Sep 26^th, 2003, 4:54pm

Welcome Donna!

I'm glad you were able to find us. That is just the beginning! Read as much as you can from this site as well as from OUCH (Organization for Understanding Cluster Headaches) While you are there....join! You have definately come to the right place to vent, get support, give support, learn, etc... Additionally, take the cluster quiz on the left and see what you think.

You might be able to get some satisfaction from a GP. However, get a referal or whatever you need to see a neuro as well. CT scan and MRI can show different things that can be causing clusterlike symptoms although it is rare.

Good luck with finding some meds that offer relief. Hang in there!

Chris

Title: Re: I'm not going crazy after all
Post by BarbaraD on Sep 26^th, 2003, 5:04pm

You need to show your mother-in-law's magazine to HER and suggest SHE read it. She MIGHT learn something. UGHHHHHH! I just love these 'professionals'! (My daughter-in-law is an RN who knows all about CH - yeah right! - lay down in a dark room and take some aspirin!)

Get referred to a neuro and have the CAT and MRI done to rule out other things.

Go to the doc with your literature in your hand an "insist" he/she listen to YOU for a change.

And NO you are NOT crazy (well the jury is still our on CHers, but here in Clusterville we're all crazy so we seem sane to each other and we'll let it go at that).

Vent, ask questions, say what you feel - Welcome to Clusterville. We're sorry you have to be here, but glad you found us.

Hugs BD

Title: Re: I'm not going crazy after all
Post by ave on Sep 26^th, 2003, 5:07pm

Donna, if you come back from the doc, having heard that women don't get this.....

...think angry thoughts but don't believe her (or him).
We females get clusters too, may be not as often as men, but more often than you'd think.

The advice above is excellent. Do check out the O2 info as well, it has helped a great many people without pumping meds into their system.

Oh, and show ma-in-law the OUCH-site with all the relevant information and the library. If she is a R.N. she will be impressed, and maybe start to believeyou.

Title: Re: I'm not going crazy after all
Post by stevegeebe on Sep 26^th, 2003, 5:21pm

Excellent first post Donna.

You have just come out of the woods. New journey now.

Welcome. Read.

Steve G

Title: Re: I'm not going crazy after all
Post by Melissa on Sep 26^th, 2003, 8:00pm

Donna,

Welcome to the family, you are not alone in your pain! We are here to support you. :D Let us know how it goes with the doctor, and make sure you stay strong! Click on the OUCH website highlighted in yellow to the left of your screen. Once there, click on "Cluster Help", and print off as much information you need to arm yourself for your doc visit, that's what it's there for.

Good luck and keep us updated!
:)mel

Title: Re: I'm not going crazy after all
Post by Miklos on Sep 26^th, 2003, 8:32pm

You've got my empathy. My MOM still sends me crap about how to "fix" my headaches. This, after almost 20 years plus an episode while she was visiting.

Viva Matricide!!

Title: Re: I'm not going crazy after all
Post by taraann on Sep 26^th, 2003, 10:49pm

on 09/26/03 at 15:48:40, Donna_D. wrote:

I am Not Alone.

No you are not!

But as was said by others you need to see a Neurologist and you need to get CAT to rule out anything else.

Hang in there. There are many meds (preventatives and abortives) that help many ppl live with CH, it just takes time to find the right doc and the right med combo that works for you. Also many here find much releif from Oxygen.

Title: Re: I'm not going crazy after all
Post by Charlie on Sep 26^th, 2003, 11:31pm

Welcome aboard and I too felt it was something that was going to do me in. You seem on your way to getting some good help. Let us know how it goes.

Good luck and show the description of this horror that you'll find at the following link to your relatives:

http://www.ouch-uk.org/ch/note_colleagues.cfm

This is a technique that helped me and others:

http://www.netsync.net/users/charlies/

Charlie

Title: Re: I'm not going crazy after all
Post by Carla_Comiter on Sep 27^th, 2003, 12:59am

Your posting made ME cry... My heart goes out to you.

I suggest we sic Jonny on your mother-in-law. Stick around, you'll learn why this is a very good idea.

Sending love and light your way.

Carla

Title: Re: I'm not going crazy after all
Post by judyw on Sep 27^th, 2003, 1:13am

Welcome to the crazy world of CH...Sounds like you will fit right in,,,,Please keep us posted on how things go for you...Know where to come when you need some support...Kiss the babies and read read....