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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Just found the site
        
(Message started by: heartlessgrl on May 13^th, 2006, 2:18am)

Title: Just found the site
Post by heartlessgrl on May 13^th, 2006, 2:18am

Hi i just came across this site. And I'm so glad I found it. I've never met anyone else who has ever had the kind of headaches That I get. And when I came across this site I couldn't believe I had finally came across a place like this. Where there are people that understand what I go through with the pain of these headaches.
And know how long it takes to get over them and what kind of hell it is while they go on for days and days. I think i'll tell my doctor about this site. Maybe he can learn a few things about these type headaches. And hopefully he will try some of the treatments on here that he's not tried with me yet. Which I've been on all the meds. And the narcotics omg I can't even tell you how many of those i've tried.
And nothing works. So maybe Doc will get a few ideal from here... Thanks so much for the site...

Title: Re: Just found the site
Post by LeLimey on May 13^th, 2006, 3:15am

Hello, its nice to meet you!
Tell us a bit more about yourself so we can see what we can do to help.
How long does each attack last? And how long does your cycle last? How often does it repeat itself? For instance I mean some people get an episode lasting several weeks once a year at say, springtime.
What meds have you tried so far? If we know this we won't be giving you useless info!
Hope to hear more from you soon, I'm sure there is alot we can do to help and support you.
Helen

Title: Re: Just found the site
Post by Bob_Johnson on May 13^th, 2006, 9:25am

Rather than just giving your doc this site address, give him this document. It's written by one of the leading headache doc in the U.S.

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)

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

Title: Re: Just found the site
Post by Garys_Girl on May 13^th, 2006, 12:58pm

OXYGEN! Definitely click on the "Oxygen Info" link on the left, and get a scrip for O2! It works for many to abort quickly.

Also, talk to Doc about supplements. Melatonin works for many to help them get sleep (in the 9mg - 15mg range as opposed to the usually recommended 3mg - 5mg range): Hubby just switched from Melatonin to L-5-HTP, and it's working better than the Melatonin. Here's a link:

http://www.holisticonline.com/Remedies/Sleep/sleep_ins_melatonin-and-5HTP.htm

You may also want to consider talking 600 - 1200mg of calcium and 250 - 500mg of magnesium. Without the magnesium, calcium can make you constipated, and without the calcium, the magnesium will likely give you diarrhea. The two work together to help improve the performance of your biologic clock, which is believed to be the seat of the problem for CH sufferers.

You may also want to consider 1000mg Taurine supplements. Taurine helps improve your metabolism of the magnesium and has many additional benefits (particularly improving your LDL/HDL cholesterol ratio).

If you use Red Bull (caffeine) as an abortive, you do not need the Taurine supplement; Red Bull has Taurine in it.

Most importantly, read, read, read! This site is chock full of info. And, unfortunately, what works for one person doesn't necessarily work for another, so there are many things people have tried posted throughout the site. And the sooner you start experimenting, the sooner you will hopefully find the right combo for you.

Wishing you pain free days and nights,

Laurie

Title: Re: Just found the site
Post by Garys_Girl on May 13^th, 2006, 1:22pm

Just in case you don't read the thread "Melatonin vs 5-HTP" in the medications forum, I figure I'd better include this link:

http://www.med-owl.com/clusterheadaches/tiki-index.php?page=5-HTP

Floridian just put it up in that thread, and it's important. If taking triptans or anti-depressants, which so many clusterheads do, 5-HTP should not be taken because of interaction.

Laurie

Title: Re: Just found the site
Post by nolanski on May 19^th, 2006, 7:39am

I just found this site also. I started getting clusters last year, but when I think about my symptom's I could have been suffering for two in total before really knowing what the hell was going on! After an extremely bad month of loosing my eyesight with excrutiating pain to my head, I had an episode of also going numb down one side like I was having a stroke, I just wanted to drop to the floor and die. I turned to my boss and said Im going home, I could barely talk or get the words out, and new there was something wrong with me. Got to my GP and she informed me that I am suffering from a cluster migraine. I was so upset, as growing up as a child I suffered quite badly with migraines and was always lead to believe I would grow out of it! Now in my thirties after having the occassional migraine, am now told of this rare type that I suffer from. I am so angry! My GP and I had gone through all the causes of why, are you stressed, my eye sight, hormonal......I feel great other than once a year for three months I go blind, my head feels like its going to explode! My GP has suggested medication, preventative .......Im not happy about that - so have refused. Supposed to have an MRI done, last year and have not gone - Im being stubborn with the fact that, what is it going to prove? I have what I have, I just need to manage it. If I tell people about my condition, they look at me as if Im making it up. Even the optomertrist hadn't heard of cluster migraines. Have not had one for months, keeping my fingers crossed I have had my dose and thats it, but feel like Im living in fear of them coming back. Unless you have suffered from them you could never understand. Im glad I have come across this site ;;D

Title: Re: Just found the site
Post by Filbert on May 19^th, 2006, 9:56am

Hi nolanski and sorry to hear that you are living in fear of your headaches returning.
I am of course not a doctor but there are parts of your post that worry me. You mention numbness and difficulty in speaking and they are not common symptoms of cluster headache. My advice to you would be to make every effort to see a neurologist as soon as possible as there is a condition that can cause these symptoms and it is one that you shouldn't take cluster medication , for example imigran/trex injections,for as there could be serious consequences!

I wish you the best of luck with it!!
Fil

Title: Re: Just found the site
Post by heartlessgrl on May 19^th, 2006, 11:00pm

Hi well thanks for all the replys.. And the medicines i've tried lol omg there are to many to list the ones that i'm on now are Stadol MS Contin (morphine) is the genric name for it. And percocet 10, And i'm also on Xanax and lortab 10 and torodal and demoral injections.
And for the spells well They last for days when i get them. And I usually have them 3-5 days at a time. I only have one week maybe two if i'm lucky each month.
I've been having them since 1999 and they just continue to get worse. I've been on ever migriane medicine know to man. So to say. And nothing has ever helped.. Not the stadol not the morphine/MS Contin. Not the percocet and not the demoral or toradol shots either. I told my doc There was no way i could keep going through this. At times I think Death would be a blessing But i'm sure you all know what I mean..
And mine continue to get worse. And I don't know how much longer I can keep going through this. But I've got two kids And that is the only reason I keep trying to go on.. But sometimes It's so hard. But you all know this. I'm sure. I've had test after test. The Botox OMG what a joke. And hey am I wrong or what that stuff hurts does it not? or is it just me that thinks it is painful..?!?!?!?!...
I cry , press my hands to my head, hot showers, cold showers, Messagers, the list goes on.. And i've not found any relief. After the Second day of them I'm thinking Death isn't a bad Ideal... I had a 11 pound baby and I would rather go through child birth again then have to deal with these headaches..
And the migrianal nasal spray am i'm the only one who thinks that stuff is a joke.?.?. And I don't have a supportive husband. He tells me the best thing you can do is just not think about it. Which makes me want to choke him.. He has no ideal how painful they are.
And when I came across this site. I was so happy. Because I knew finally there were people out there who know how painful they are. And what kind of pain I go through.. If I wake up with them well there is no going back to sleep, like I said they usually last between 3-5 days.. Then I may go a month or two without having one. Then boom they start again. And I'll have them for the next month or so ever couple or days..
I just don't know how much more I can take.. With them only getting worse.. And I will take all the advise you all have to offer.. Because at this point i'm Desperate.. So anything you all have to offer please feel free to tell me... And again Thanks for The recomendations i've gotten so far... I'm ready to try anything for any relief... And I'd love to be able to sleep if it is just an hour even.. But there is no sleeping for me when I have these spells.... So thanks again.. And I'll print the document and take that to my doctor... Thanks for that Bob_Johnson.... And thanks to the rest of you for your recomemdations... I even changed my eating habits and nothing has worked.. Once again thanks And GOD BLESS YOU ALL...

Title: Re: Just found the site
Post by Opus on May 20^th, 2006, 9:35pm

on 05/19/06 at 23:00:42, heartlessgrl wrote:

None of these are Cluster meds. Narcotics can make things worse because they are vascular relaxers. Take this list to the doctors (http://www.ouch-us.org/medications/medications.htm) and if they prescribe something that isn't on it ask why.

on 05/19/06 at 23:00:42, heartlessgrl wrote:

I cry , press my hands to my head, hot showers, cold showers, Messagers, the list goes on.. And i've not found any relief. After the Second day of them I'm thinking Death isn't a bad Ideal... I had a 11 pound baby and I would rather go through child birth again then have to deal with these headaches..
And the migrianal nasal spray am i'm the only one who thinks that stuff is a joke.?.?.

on 05/19/06 at 23:00:42, heartlessgrl wrote:

And I don't have a supportive husband. He tells me the best thing you can do is just not think about it. Which makes me want to choke him.. He has no ideal how painful they are.

Most Non Cher's cannot understand the pain, and a lot it seems, think we are faking it.

on 05/19/06 at 23:00:42, heartlessgrl wrote:

. If I wake up with them well there is no going back to sleep, like I said they usually last between 3-5 days.. Then I may go a month or two without having one. Then boom they start again. And I'll have them for the next month or so ever couple or days..

Do you mean you have the attack for 3 to 5 days long? If so then you probably don't have CH. Some people do have them so close together that they feel like they are continuous.

Opus/Paul

Title: Re: Just found the site
Post by Opus on May 20^th, 2006, 9:46pm

on 05/19/06 at 09:56:36, Filbert wrote:

Also just to mention the term cluster migraine is a misnomer and you can have migraine or cluster headache but not cluster migraine. l

Then why is this on OUCH? (http://www.ouch-us.org/chgeneral/chandrelatedha.htm) I get Cluster-Migraines they are truly horrible, have to dance but movement makes it worse. Trip-tans are useless, I hope I have O2 when I get another one, which for me is usually 2 a year.

Opus/Paul

Title: Re: Just found the site
Post by Filbert on May 22^nd, 2006, 7:48am

Thank you Opus/Paul for pointing that out I must admit I'd not come across that before and I apologise.
I do believe though that some GPs use this term very loosely to explain a whole host of headache conditions and seem to have little or indeed no understanding of CH or indeed "Cluster Migraine".
I have now edited my original post.

Fil.

Title: Re: Just found the site
Post by maximilyun on May 29^th, 2006, 12:36am

Your husband actually said "Just don't think about it."???

That, to me, is the most absurd thing I've heard in the last six months. And considering our current political climate, that's saying an awful lot.

Hang in there lady. There are treatments. Sounds like your GP might be looking in the wrong direction. As for your husband.....well....he needs a reality check.

Don't think about it. Good grief. If it were only that simple....

Title: Re: Just found the site
Post by unsolved1 on May 31^st, 2006, 6:43pm

Okay, I'll be the one to say it. If your headaches are lasting for days at a time ... you DON'T have cluster headaches.

And as for the term 'cluster migraine' ... I'll have to jump in my dark-light car-truck and go down to the flat-hilly area to catch a plane-boat over to the cold-hot place and think about that one. [smiley=huh.gif] I hope I don't break my arm-leg while taking the trip ! ;;D

UNsolved

Regardless of the dx, I'm sorry for your pain, I hope you find some relief soon :)