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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> I finally diagnosed myself!!!
        
(Message started by: Demeter on Nov 20^th, 2005, 7:28pm)

Title: I finally diagnosed myself!!!
Post by Demeter on Nov 20^th, 2005, 7:28pm

Firstly, hello everyone. I am a 31 year old female.

I started getting excruciating headaches around the age of 16. The first two episodes I tried to ignore, yeah right, and didnt see my doctor. Just chalked it up to stress, sinus or migraines. Well, around age 21 I went to see my doctor, explained to hiim that it was right side of head, right eye gets red/swollen/watery, lasts anywhere from 30-45 min, 95% of the time happens around 1-2 hours after I have fallen asleep, cant lay down during headaches.....same ole same ole. He treated me for sinus, then migraine, then tension and I kept calling him every couple of weeks telling him the treatments were not working. When I explained to him the intensity of my headaches he acted as if I was exaggerating and just really didnt seem to care. Eventually my nightly headaches stopped, so I just didnt go back for the appointment.

The next time the headaches started up, I didnt even make an appointment, in my head I must be the crazy one, so I toughed it out for a few months...pure hell, as usual.

I moved to another state when I was 26, had a small bout of headaches and again, toughed it out on my own. Well around 28 got them again, after 2 months I could not take the pain anymore, went to the ER and got referred to a neuro, went to the appointment, told him all the symptoms, again, told me he wanted some tests done and to take over the counter medication until results were in, however he did put me on some medication for seizures until I went for an EKG and he got the results back. He also sent me for an MRI, all results came back good. He prescribed me migraine meds and said that I have migraines. Medication didnt work, and at that point just felt helpless. About 2 weeks later my headaches stopped, thank god.

So that brings me to now, 2 1/2 years later....about a month ago I started getting these headaches again, that dreaded first one that I cursed up and down and tried to fool myself into thinking that they werent coming back. After a couple weeks of headaches I decided I have to do something, I know I am not crazy, I know these headaches are for real and that someone has to know what I am talking about. Well, I got online about 3 weeks ago I typed in severe headaches into my search browser and low and f'n behold!!!! I am not the only one, my symptoms are to a tee a cluster headache, how could none of these doctors have seen this!!! I have now made an appt with a different neuro on Dec 1st, and I am going in there knowing my crap and not taking no for an answer :) And this website is like my saviour!!! So I would like to thank everyone on here for all of the info and post's I have read the last few weeks, I knew I wasnt crazy :)

Title: Re: I finally diagnosed myself!!!
Post by Kris_in_SJ on Nov 20^th, 2005, 7:53pm

Hi Demeter and welcome,

Be sure to explain to your neuro that you've been through all the relevant tests to rule out anything truly nasty. Also be sure to tell him/her that migraine meds don't work. If you haven't seen this link yet, be sure to print it, read it, and take it with you.

http://www.brightok.net/~mnjday/chtherapy.pdf

Way too many clusterheads go undiagnosed for far too long. The latest treatments and meds are described in the link above. Meanwhile, if you're getting your hits at night, try Melatonin (sold OTC). 9mg/night about 30 minutes before sleep may very well help - it has for many here.

Good luck and keep posting,

Kris

Title: Re: I finally diagnosed myself!!!
Post by chewy on Nov 20^th, 2005, 8:14pm

Quote:

migraine meds don't work.

Just a little correction. Lots of meds designated for Migraines work. Its the dosage that needs to be changed. In fact most meds that are effective for CH are off label.

Title: Re: I finally diagnosed myself!!!
Post by Kris_in_SJ on Nov 20^th, 2005, 8:19pm

Chewy is right - I stand corrected.

For example, Imitrex pills are often very helpful for Migraines, but take too long to work for Clusters. Verapamil is usually prescribed for high BP or heart problems, but is often very effective as a preventative for clusters.

Just a couple of examples.

Kris

Title: Re: I finally diagnosed myself!!!
Post by chewy on Nov 20^th, 2005, 8:29pm

Dont miss Kris's point though. Dont let the Doc treat you for Migraines if you have Clusters.

Two distinct conditions with distinct treatments.

Title: Re: I finally diagnosed myself!!!
Post by Beastfodder on Nov 21^st, 2005, 8:40am

Demeter

Wonder how many of us have similar stories? Brilliant that you're now diagnosed and found the only place that really sorted CH out for me.

Read and digest - O2 is a good abortive for attacks whilst 'clusterbusters' has been little short of remarkable in shifting the clusters themselves.

Very best of luck in getting a fast remission and cure

Title: Re: I finally diagnosed myself!!!
Post by mcf69 on Nov 21^st, 2005, 8:44am

Welcome to the board Demeter. Make sure you check into the oxygen info and bring it with you to the doc, and like Kris and Chewy said, don't let them treat you for migraines, the imitrex pills don't work, go for the nasal spray or better yet the stat dose auto-injector. Best of luck

Title: Re: I finally diagnosed myself!!!
Post by lionsound on Nov 21^st, 2005, 12:48pm

on 11/20/05 at 19:28:51, Demeter wrote:

I have now made an appt with a different neuro on Dec 1st, and I am going in there knowing my crap and not taking no for an answer :)

GO YOU !!!! :)

You are your own best advocate.
If you have any questions please ask us...you've been reading a lot..excellent!
Oxygen is key to ask for.

Let us know how you are doing.
be well and Pain Free,
lionsound

Welcome!

Title: Re: I finally diagnosed myself!!!
Post by Demeter on Nov 21^st, 2005, 2:10pm

Thank you for all your warm welcomes. I have printed and read the literature on therapies and plan to take it with. I dont want the doctor to feel like I think I know more then she does, but hopefully she will understand my frustration.

It was a little disheartening to find out that there is no "for sure" cure, but just the fact that I wasnt the only one in the world with these types of headaches.

Title: Re: I finally diagnosed myself!!!
Post by Goat on Nov 21^st, 2005, 3:01pm

Sorry you had to find us but glad you did hang in there and dont let docs push you around. You will get help even if it through the family here.

Mike

Title: Re: I finally diagnosed myself!!!
Post by Ronny on Nov 21^st, 2005, 5:06pm

on 11/21/05 at 08:40:25, Beastfodder wrote:

Demeter

Wonder how many of us have similar stories?

I bet there are a lot of them.

Hi Demeter, i'm glad you found this site and will get the right treatment soon.

Title: Re: I finally diagnosed myself!!!
Post by thebbz on Nov 25^th, 2005, 5:01pm

There are many of us that went 10 to 20 years without a proper diagnosis and were givin all the meds known to man as a try and see approach to finding something that works. So feel lucky you have all of this valuable information for your neurologist. These people rock. Hope you don't have these. If you do stick around you will find the entertainment to your liking. If nothing else works you can find laughs and support.
jb

Title: Re: I finally diagnosed myself!!!
Post by cazman on Nov 27^th, 2005, 12:47am

welcome and im glad you found us when i found this place i broke down big time just the fact i know what is wrong with make ita bit easier to deal with as i nhope it does for you.
the peeps here are the best, we hope you stick around. just remember us when it dont hurt anymore cause thats when you can help others like we do for you , ive been pf for about 3 months and im still here to help others.

Title: Re: I finally diagnosed myself!!!
Post by Kate in Oz on Nov 28^th, 2005, 4:22am

Hey Demeter,

Just wanted to wish you all the best for your appointment on the 1st. I'm really glad you found the site - what a difference it makes knowing that you're not the only one hey?!

Good luck and hoping you get some pf time real soon.

Kate