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        Cluster Headache Help and Support >> Cluster Headache Specific >> daytime cluster
        
(Message started by: nosnowmen on Dec 8^th, 2006, 9:42am)

Title: daytime cluster
Post by nosnowmen on Dec 8^th, 2006, 9:42am

I am very new here. I have not been diagnosed with ch, but that is due to every Dr. , as did I until yesterday, feel that my headaches are from my brain surgery that I had in my youth. When I read the descriptions of a ch I was reading about my self. I am a hider and dancer. The one thing that is strange is I get the majority of my chs around noon and dusk. I have had many at night, but not near as many as daytime. Is this strange? Most of what I read night is the most common. Any help would been appreciated.

Title: Re: daytime cluster
Post by Mattrf on Dec 8^th, 2006, 10:37am

Give us more detail on your systems so we can help. Have you taken the quiz on the left yet?
If you truly have CH you have come to the right place, you will not find a better place for support, and everyone here knows what it is to live with the monster.
So welcome to the funny farm, sorry you had to find us but glad you did, feel free to post as much as you want and even rant, we all do it.

Matt

Title: Re: daytime cluster
Post by BB on Dec 8^th, 2006, 10:47am

Hello

Although night times hits are common for some, many here have mainly day time hits as well.

My husband certainly have more day time hits than night ones, especially now that he is taking melatonin.

You really need to see a good headache neurologist to get properly diagnosed. You cant really diagnose yourself. There are many types of headaches, some are similar to cluster but the treatments are different.

You also need to see the neurologist to get brain scan and MRI done, to rule out nasties, especialy with a history of brain tumour.

Painfree wishes to you.

Annette

Title: Re: daytime cluster
Post by nosnowmen on Dec 8^th, 2006, 11:12am

It wasn't a tumor, but a cyst. Please dont be cynical with me about getting diagnosed. I have lived with these headaches for 11 years, the last 8 without meds. Because Drs. only want to throw pills at me and look at an MRI to tell me that they are ghost pains as a result from my surgery. When you finaly hear the truth it reverberates to the bone. I now know what I have. I have had at least 7 MRIs and twice as many C/T scans. Every time the Drs. tell me the same thing. The first time my wife saw me doing "the dance" with tears only in one eye she took me to the ER. I told her what the Dr. was going to tell me and what he would perscribe. As soon as he came back and repeated what I told my wife he would say I walked out with my head in my hands. And still on my own. I have had a big disstrust of the medical community for a long time. Please dont take this personal. I had a kidney infection at a young age and my Dr. told my mom that I was too young for a kidney infection and that I was trying to play hooky from school. I sucked it up and took it. Three months later I passed 3 kidney stones at home and my kidney went o 5% opterational. This is what started my disstrust.

Title: Re: daytime cluster
Post by Mattrf on Dec 8^th, 2006, 11:29am

Don’t take what people say as critical of you, we just want more information to try and help. We get all kinds here and most of us like to get as many facts as possible before trying to help someone. This is the best resource ever and has saved my life and many more, I no longer feel alone or insane and know that doctors that don’t believe me are the ones who are nuts not me. If you go to the OUCH site (link on left side) there is a listing of doctor that people recommend in each state that know at least something about CH so you may want to take a look and if there is one in your aria give them a try. There are a few different headaches that are similar to CH, I myself was diagnosed with CH but turned out to be SUNCT so I have been through it as well. Keep your head up and let us know what we can do to help, that’s what we are here for.

Matt

Title: Re: daytime cluster
Post by CynthiaB on Dec 8^th, 2006, 11:31am

Please don't mistake our concern for you as cynicism. You stated yourself that you have not been diagnosed. With your history of brain surgery, as we did not know if it was benign or malignant, we certainly want to make sure you have had everything ruled out.

This is not because we want to maintain an exclusive club. We would hate for you to miss out on a window of opportunity for successful treatment of another condition.

Many of us spent years in frustration, some still are searching... for a diagnosis, a succesful treatment plan, or a doctor that we trust. We do understand these feelings.

Okay, now that we have that out of the way....I have 'hits' during the day as well. Now that I'm on meds I will usually sleep through the night. Usually.

One thing I'm starting to learn is that this thing varies from person to person, and sometimes from cycle to cycle.

Title: Re: daytime cluster
Post by nosnowmen on Dec 8^th, 2006, 12:01pm

I appologize for being on the defence. I have never met anyone that could describe what I was going through or felt. It is nice knowing that I am not nuts or a sissy. I will use the helpful Dr. guide. That sounds just like the information that I have needed for a long time. Thank you agian for your true care and understanding. This site and info have come to me in a time that was needed. I am at the end a my cycle. This was the worst one yet. I sell cars and am lucky I can hide away for as long as needed. I am looking into oxygen, and reading as much as I can. This site and the people here are a true blessing. Thank you.

Title: Re: daytime cluster
Post by Redd715 on Dec 8^th, 2006, 8:42pm

For the first 15 years or so of CH for me the hits were 95% night hits and 5% day hits on average 3 day PF with 4 days of hits ever week of every year. Then in March 2004 they mutated and it was about 50/50 day night equality for days on end. I now use the www.clusterbuster.com method of treatment and my hits have gone from wake me ups very seldom to mostly late night break threw attacks anywhere from 9-11pm. Very few middle of the night attacks anymore.

One thing to remember...the beast is unique to each of us in some ways, and frightingly the same in others. How it manifests in each of us is the key to treatment on an individual basis in my opinion.

Title: Re: daytime cluster
Post by HeadhurtinMama on Dec 9^th, 2006, 12:18am

I am probably considered an oddball as I don't get hit at night most of the time. I am chronic, and unless I stay up way past my bedtime, I only get hit during the day, but several times a day.

Bridget

Title: Re: daytime cluster
Post by nosnowmen on Dec 9^th, 2006, 9:30am

Thank you very much for your help. I had a rare night attack last night. Thanks to this site and the people on it I learned about using Red Bull. I picked some up on the way home last night. It did not aborte the attack, but it only reached a 3-4 as aposed to the usual 8-9. I consider my self blessed because my attacks usually last only 30-60 mins. This site has given me a new strength. Thank you and may God bless every one of the people that are fighting this beast.

Title: Re: daytime cluster
Post by TonyYZF on Dec 9^th, 2006, 3:54pm

Hi nosnowmen,

Welcome. Just to throw my 2 cents in. I am primarily a daytime hit person as well. Havent had hard hits since August but have daily shadows since July. My shadows are typically below a 5 so I may just be sleeping through them if there are any at night. Do have trouble trying to go to sleep if I have a strong shadow at bedtime that might keep me up a couple hours but that is not very often. Have been taking Verapamil for a while now and it has taken the edge off the shadows. Even when I was getting hit hard, 90 percent of my hits were during the day so I sort of consider the daytime my norm...for now anyway. Good luck and pain free wishes.

Tony

Title: Re: daytime cluster
Post by Karla on Dec 9^th, 2006, 4:45pm

I have always gotten my hits during the waking hours.

Title: Re: daytime cluster
Post by Guiseppi on Dec 9^th, 2006, 9:29pm

The first 25 years it was daytime only. In fact in the early years, 18- to early 20's, if I felt one coming on, and I could get to sleep, it would abort! (I know that's contrary to conventional wisdom but it sometimes worked!) The night time hits for me started in my early 40's. The majority of my hits are still daytimers.

Welcome to the nut house and do continue to look into the oxygen. Almost no side affects, cheap, and very effective. Good luck and wishing you a long remission!

Guiseppi

Title: Re: daytime cluster
Post by BarbaraD on Dec 10^th, 2006, 6:12am

Since I started taking Melatonin at night, I don't usually get hit then, but wake up with a shadow and usually get hit during the days. I'm chronic and am just coming down off a "high cycle".

Red Bull/Coffee and O2 are great if you get to the attacks as soon as they start, but after about a 5-7, they don't work as well (for me).

I keep Ergotomine (Cafergot) as an abortative handy just in case.

pain meds don't do a thing for CH (they're for migraines and even at that the ergotomine works better on migraines also).

Sorry you had to find us, but read everything - we've got years of info on this site.

And find a neuro who treats CH (you may have to ask a lot of questions before you find the RIGHT one, but there's one out there somewhere).

Title: Re: daytime cluster
Post by E-Double on Dec 10^th, 2006, 8:17am

on 12/10/06 at 06:12:34, BarbaraD wrote:

Since I started taking Melatonin at night, I don't usually get hit then, but wake up with a shadow and usually get hit during the days. I'm chronic and am just coming down off a "high cycle".

This is exactly what I was going to write, however I haven't taken melatonin since the baby was born since I need to be able to get up if necessary.
I can say this though, after an extended period using mealtonin, there was a point in which I no longer needed it as the hits didn't come at night despite not using it so I satyed off for a while.
They come ever so often during "high cycle" which for me is every 2 weeks or so. I typically go 2 weeks high followed by 2 weeks low or vice versa ;)

Title: Re: daytime cluster
Post by tanner on Dec 10^th, 2006, 8:49am

on 12/08/06 at 12:01:20, nosnowmen wrote:

If your diagnosis turns out to be CH for sure you are not a sissy, but you are nuts which means you will fit in just fine ;;D

As to timing I have for 20 yrs been mostly a daytimer till around 11:00 pm but with no apparent pattern. Lately the beast has been throwing in late nighters just to make life more interesting. Welcome to the club, ~~good~~ great folks, much wisdom, screwed up heads.

....Tim

Title: Re: daytime cluster
Post by jmorgan52 on Dec 11^th, 2006, 9:09am

Day time, night time - it has never made any difference to me. I would get hit at regular intervals throughout the day and night. Typical for me was 2am, 6am, 11am, 2pm, 6pm, 11pm for months on end. Each lasting at least an hour and often 2 or 3. An hour or so after the pain vanished it came back again,

The only abortive that ever worked for me was the imigran (imitrex in USA) auto-injector.

Get your Dr to try one out on you when you are getting the HA and see if it aborts - usually with 10 minutes. The tablets and nasal spray takes so much longer it is useless, Try the jab first.

John