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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> New here and to clusters
        
(Message started by: momofmany on Oct 23^rd, 2005, 4:29am)

Title: New here and to clusters
Post by momofmany on Oct 23^rd, 2005, 4:29am

Hello Everyone,

I think I may be one of you. I am not sure but I do believe that I have clusters. From what I have read on here I have some symptoms but I think mine are different from what most of you have.

I have had them since I can remember but they have been really bad for the last month and I am unable to manage daily life. Mine come on in the middle of the night and I have two or three a day. They last for a few hours. Between hurting and sleeping I am not much of a person. Sometimes my imitrex works and sometimes they don't. I was really wondering if I was imagining these or not because I have never heard of someone hurting behind the eyes the way I do. I thought I was sleeping wrong or needed glasses. I just kept thinking everything.

I am so glad I found this board. I have read a lot tonight but there is still so much to learn. I think my symptoms are different from most. I just have a horriable aching behind my right eye. My left has had it once or twice but mostly the right. Mine come on at night and last for hours. It seems that most people that have clusters only last for minutes? I don't have a lot of time to sleep and I think that it probably doesn't help. I had one this morning and I took meds and finally went back to sleep and when I woke up it felt much better. I use to think I got them from sleeping to much because every time I would sleep I woke up with a pain behind my eyes that was just unbearable. Does this sound right?

I am just so happy that someone can understand my headaches even if you don't think I have clusters. You all know my pain.

I swear I think my children and my husband think I say I hurt to sleep. Life would be so great if I didn't have to sleep and I wasn't hurting all of the time. I felt really bad until tonight after I was reading some of these other posts. Now I know I am not imagining and that other people have to sleep to help them also. I always would wonder if I was just imaging or a wimp.

Thank you all so much for this site. I haven't even known about it for 24 hours and I am feeling that it helped me already. It made me know I am not alone.

Title: Re: New here and to clusters
Post by marty on Oct 23^rd, 2005, 4:36am

Hi

It may very well be CH and if it is, I'm glad that you found us.

It is not uncommon for an attack to last up to 2-3 hours but I would think that most of us experience attacks that last 40 minutes to an hour - but we are all different.

Did you take the "cluster quiz"?

Have you tried oxygen yet?

Anyway, welcome to Clusterville :D

Marty

Title: Re: New here and to clusters
Post by BMoneeTheMoneeMan on Oct 23^rd, 2005, 4:44am

Like Marty said, you should take that cluster quiz to see, and you should also get a diagnosis from a medical doctor.
The sleep deprivation is one of the hardest things. Lots of people here take a nighttime cocktail of 9mg melatonin and 50mg benadryl 1 hour before lying down. Though this doesnt give total relief, you should be able to get a halfway decent night's sleep.
Do not take naps.
Dont take pain pills for these headaches. Pain pills tend to make it worse.
Welcome, and i hope you get a break soon.
BMonee

Title: Re: New here and to clusters
Post by Kate in Oz on Oct 23^rd, 2005, 7:39am

Hello and welcome :)

Reading your post reminded me of how I use to always feel - like it was unreal - imagined - all in my head - cos no one could tell me what was wrong.

I'm really glad that you found this site - such a difference to know that you're not alone!!

If you've not already tried it, and the diagnosis is clusterheadaches, definately give 02 a try.... seems to be a godsend for a lot of us.

Stick around, read, ask questions.... and hopefully you'll get a few laughs in along the way - best medicine yes?

Hope you get a break soon,

Kate

Title: Re: New here and to clusters
Post by E-Double on Oct 23^rd, 2005, 10:02am

Specificallyhow many HOURS????

There are a few different HA types that are similar to CH but differ in duration, frequency and intensity.

Read as much as you can and Welcome

Title: Re: New here and to clusters
Post by BobG on Oct 23^rd, 2005, 10:59am

on 10/23/05 at 04:29:56, momofmany wrote:

They last for a few hours.
How many are a few? If one or two it could be clusters. If 3 or more it may be a different type of headache.

It seems that most people that have clusters only last for minutes?
Minutes? 3? 15? 45? Cluster will usually last about 20 to 80 minutes. (We are all different with the length). A 3 minute attack is more likely CPH.

I have never heard of someone hurting behind the eyes
I woke up with a pain behind my eyes
Eyes? As in pain behind both eyes. With clusters the pain is usually behind only one eye

You all know my pain.
We sure do. Welcome to the board. Hope you find relief soon..

Title: Re: New here and to clusters
Post by lionsound on Oct 23^rd, 2005, 12:57pm

Hi!
I read on your other post that you are going to the doctor..that is the exact right thing to be doing. If you have never been diagnosed with any type of HA before it's important to have a thorough neurological work up....especially if the headaches have changed ..if it's new for you..get it checked out.

try to keep a log of your headaches and how long they last, when they are, where the pain is, and what meds you took,if anything, for them.

Just becuase your Clusters aren't exactly like someone else's doesn't mean that's not what they are. However, it's best to be seen by a neurologist. You need a proper diagnosis to get treatment and scripts.

Welcome!
Be well and Pain free!
-lionsound

Title: Re: New here and to clusters
Post by momofmany on Oct 23^rd, 2005, 4:34pm

Thanks for the warm welcome everyone.

I am not sure they are clusters but I am calling the dr tomorrow to see about getting in and getting some tests or something.

My eye hurt for about 2-3 hours but then it just aches a bit for another hour or two. They go away for a little while and then they start all over. I have not kept track but I definitly will now.

Thanks for all of the info. It is so nice to have a place that you can compare what remedies were used and how they worked. When you are hurting as bad as we do anything is worth a try.

So does anyone know why pain meds don't work on CH? I have not tried any just my imitrex because I have been diagnoised with migrains and I just thought they were a migrain located in a different place. Sometimes the imitrex does work but other times it does not. My aches usually start while I am asleep but when they do come when I am awake they start with a tighting in my head and then they rest behind my right eye.

I will keep reading and learning all I can. I expect for you guys to hear from me alot and ask many questions.

Title: Re: New here and to clusters
Post by Mr. Happy on Oct 23^rd, 2005, 5:48pm

on 10/23/05 at 16:34:19, momofmany wrote:

I am not sure they are clusters but I am calling the dr tomorrow to see about getting in and getting some tests or something.

Good idea. The tests may rule out a few things, like cancer/tumor/cyst/growth, but there IS no test for CH. Everybody has to "wing" it to some degree.

Quote:

So does anyone know why pain meds don't work on CH?

I, for one, don't know....but then again, pain meds don't work all that good on pain for me, let alone this crud.

Quote:

I will keep reading and learning all I can. I expect for you guys to hear from me alot and ask many questions.

http://mushys.com/despair/idiocy.jpeg

Title: Re: New here and to clusters
Post by Sean_C on Oct 23^rd, 2005, 7:08pm

LMAO Hap ain't it the truth ;;D

Cheers [smiley=me&mb.gif]

Sean......................

Title: Re: New here and to clusters
Post by Phil L on Oct 24^th, 2005, 1:37pm

Mr. Hap - just read your last post and it made me laugh out loud. The power of stupid people in large groups,
indeed! PFD to ya. Phil

Title: Re: New here and to clusters
Post by bnfreeman on Oct 24^th, 2005, 5:54pm

Sorry to hear you are in so much pain. Everyone is different. I never have short HAs. They always seem to last forever. I have been diagnosed by 2 headache specialists. I have classic symptoms, they just last longer. I was tolded that they were cluster-migraines. I do believe I have more than one type of headache. You may also. It will take time, but you always have everyone here. Keep us updated. And best wishes!

BF