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(Message started by: newcluster1244 on Jan 6th, 2008, 6:19pm)
Title: How bad can these f#####s get?
Post by newcluster1244 on Jan 6th, 2008, 6:19pm
I was just diagnosed with these monsters after about six months and nothing seems to help.  I'm at about two per week right now with some weeks better than others.  Any suggestions past my family doctor?
Title: Re: How bad can these f#####s get?
Post by cash5542 on Jan 6th, 2008, 6:24pm
What are you using for preventitives? Do you have access to oxygen? With this information I'm sure more people can help you.

Charlotte
Title: Re: How bad can these f#####s get?
Post by newcluster1244 on Jan 6th, 2008, 6:28pm
I haven't tried oxygen.  Does it work?  My doctor gave me Imitrex, but I haven't noticed any results yet.  
Title: Re: How bad can these f#####s get?
Post by zwibbs/Scott on Jan 6th, 2008, 6:39pm
New---Welcome. Make an appointment with a Neurologist. The Neuro has all the meds to help you. Do not make the mistake that I made in waiting 35 years to visit one----The Neuro  has seen this and dealt with every element of " clusters"  for as long as they have been doctors.  Do note medicate yourself based on advice from others----Make the appointment now!!!
Title: Re: How bad can these f#####s get?
Post by Annette on Jan 6th, 2008, 7:58pm

Hello

Who made the diagnosis of CH for you? A neurologist or a GP? Who prescribed the imitrex for you ? Was there an MRI done to rule out other nasties?

Are you saying imitrex injections dont work for you? That is very strange, because apart from oxygen, imitrex is the no 1 abortive treatment for CH. If imitrex hasnt worked for you at all then there is a chance you dont have CH. Many other headaches have similar symptoms and initially it may be hard to distinguish.

You should keep a detailed diary of the headaches, then get to see a neurologist specialising in treating headaches as soon as possible.
Title: Re: How bad can these f#####s get?
Post by chewy on Jan 6th, 2008, 8:02pm
Is the imitrex in pill form?
Title: Re: How bad can these f#####s get?
Post by artonio7 on Jan 6th, 2008, 8:05pm
What are you headaches like? Can you describe them... how often do you get them?

with warm regards,
Tony
Title: Re: How bad can these f#####s get?
Post by Jonny on Jan 6th, 2008, 8:08pm

on 01/06/08 at 18:28:27, newcluster1244 wrote:
My doctor gave me Imitrex, but I haven't noticed any results yet.  


LMMFAO! ;;D

No results huh?
Title: Re: How bad can these f#####s get?
Post by newcluster1244 on Jan 6th, 2008, 8:15pm
It was my family physician.  The Imitrex is pill form, and has not worked.  I will definitely make an appt with a neurologist.  I did have a CT scan, which was within normal limits.  Thanks for positive responses from those of you who did such.  Why the response like that Jonny, I thought this was supposed to be a supportive site.  Not a good early impression from you.   Thank you again to those with helpful information.  
Title: Re: How bad can these f#####s get?
Post by Linda_Howell on Jan 6th, 2008, 8:17pm

 
Quote:
I'm at about two per week right now with some weeks better than others



   At two per week you've got it real easy.  To answer your original question, they can and probably WILL get a whole lot worse.

Find a Neuro familiar with CH, get him to precribe oxygen with a regulator that goes to 15 lpm with a non-rebreather mask and if he's giving you Imitrex pills make him change that to the injectables or at least to the nasel spray.

Read the links to the left so you also know the names of the preventatives to talk to him about,  when you go.

Linda
Title: Re: How bad can these f#####s get?
Post by newcluster1244 on Jan 6th, 2008, 8:19pm
Sorry forgot to answer Tony.  I am at two per week on average.  It starts in the front around my right eye and feels like someone is squeezing my eye in a vice.  It usually lasts for about 1-4 hours and goes front to rear ending up in the base of my skull.  I feel like banging my head against a wall or just putting as much pressure as I can on it.  It seems to hit in the middle of the night between 12-2 am.  
Title: Re: How bad can these f#####s get?
Post by chewy on Jan 6th, 2008, 8:24pm
A lot of the time the pill form is inefective simply because the CH gets ahead of them. Ask for the injectables.

For the night hits try melatonin.
Title: Re: How bad can these f#####s get?
Post by purpleydog on Jan 6th, 2008, 8:35pm
There is a lot of information in the threads on the medications and therapies board, also on the cluster specific board. Read everything on the tabs to the left. And if it's gonna be awhile before you get in to see a neuro, ask your doc to prescribe stat-dose injectable imitrex. It works much faster. And ask about Oxygen. In other words, what Linda said. Also, getting hit twice a week is not bad at all. Many of us here would love to have that schedule.

I know these are new to you, but if you read up where suggested, you will find all kinds of ways to deal with the hits. And you can deal, you will find a way. We all do. But please ask questions, that's what we're here for. These headaches suck, for sure, but we are a support group, so come here and unload anytime. We can help.
Title: Re: How bad can these f#####s get?
Post by cash5542 on Jan 6th, 2008, 8:36pm
I can't speak for everyone but when Lisa first was showing signs of CH we would hang around the house for an hour or so, not knowing what to do, then eventually get to the ER. They would give her imtrex injections and the results were fairly weak. However, once we were more clear and she had the shots at home or was inpatient and the shots were given at the very first onset, they worked like a charm (although she hates them, makes her chest feel tight). Timing is so crucial with most of the meds, especially imitrex. Oxygen and red bull are the only thing she relies on now.

Charlotte
Title: Re: How bad can these f#####s get?
Post by Jonny on Jan 6th, 2008, 8:37pm

on 01/06/08 at 20:15:49, newcluster1244 wrote:
Why the response like that Jonny, I thought this was supposed to be a supportive site.  Not a good early impression from you.    


Sorry, I will work on my first impression in the future.....Im so sorry I sent you into dis (apply the dis that applies)

Im sooooooo sorry.
Title: Re: How bad can these f#####s get?
Post by chewy on Jan 6th, 2008, 8:53pm

Quote:
My doctor gave me Imitrex, but I haven't noticed any results yet.


How are you using the imitrex? You know its an abortive and not used as a preventative right?
Title: Re: How bad can these f#####s get?
Post by Charlie on Jan 6th, 2008, 10:48pm
Glad to meet you but sorry that it's because of this horror. You'll find a ton of good stuff here. These people know what they are doing so pay attention.....especially after visting a neurologist....nothing is so boring as a visit to a neurologist. Oxygen and Imitrex injectibles are usually pretty effective. After your exam; ask about it.

Here is something that worked for me:

                  Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie      
Title: Re: How bad can these f#####s get?
Post by Charlotte on Jan 6th, 2008, 11:44pm
the oral imitrex never got into my system fast enough.  If your doc doesn't prescribe spray or injectible triptans, please ask for maxalt melt or generic maxalt melt which melts on or under your tongue and gets into the system much faster.

Will your doc or neuro prescribe O2?

What did the doc say about the headache ending at the base of your skull?  That is not unheard of but may mean your occipital nerve is acting up, too.

Good luck.

Charlotte
Title: Re: How bad can these f#####s get?
Post by Maffumatt on Jan 7th, 2008, 8:32am
2 per week? Well I can safely say they can get a whole hell of alot worse.
Title: Re: How bad can these f#####s get?
Post by brewcrew on Jan 7th, 2008, 8:52am

on 01/06/08 at 23:44:42, Charlotte wrote:
please ask for maxalt melt or generic maxalt melt which melts on or under your tongue and gets into the system much faster.

That may just be perception, Charlotte. Maxalt is absorbed in the gut, not through mucous membranes. I think the MLT version was designed for ingestion when a glass of water isn't available.
Title: Re: How bad can these f#####s get?
Post by Charlotte on Jan 7th, 2008, 8:58am
Brew, the melt version melts in the mouth.  I put it under my tongue.  I don't swallow it.  It goes into my system through the blood veins under my tongue.  It does not go through my digestive system.  I don't use any thing to abort that requires a glass of water because that will not work fast enough.  

The real problem with maxalt melt is insurance not prescribing enough to take care of the realistic amount of headaches.

Charlotte
Title: Re: How bad can these f#####s get?
Post by brewcrew on Jan 7th, 2008, 9:23am

on 01/07/08 at 08:58:27, Charlotte wrote:
Brew, the melt version melts in the mouth.  I put it under my tongue.  I don't swallow it.  It goes into my system through the blood veins under my tongue.  It does not go through my digestive system.  I don't use any thing to abort that requires a glass of water because that will not work fast enough.

No, it gets into your system as you swallow the drug. It just disintegrates in your mouth with saliva. The drug itself does not penetrate the mucous membranes in your mouth. I've used it many times myself, and this is the way it was described to me by my neuro.
Title: Re: How bad can these f#####s get?
Post by aprilbee on Jan 7th, 2008, 9:25am

on 01/06/08 at 18:19:04, newcluster1244 wrote:
I'm at about two per week right now with some weeks better than others.  



If you have CH, it will only get worse, just keeing it real for you, most of us here suffer AT LEAST 2 times per DAY....most more...

take the advice given here, you are in the right place for support and information, but you have to take action, trust the people here, we have all been there done that and know what works....get a good neuro...find out for sure what you have!

Good luck NEW!
Title: Re: How bad can these f#####s get?
Post by Ghost on Jan 7th, 2008, 9:48am
Read Read Read. It may never get worse(doubt it) I hope for you sake that is the worst of it. Jonny may saound a likke mean but pay attention to him he as many here are a true well of knowledge. As you will see we pick on each other at times but that is more theriputic than anything else. Keep your sence of humor you will need it.
Stick around even when you are not in cycle we may need it, and as a wise CHer once said take what you need and give what you can. As I say the rest is fluff.

Mike
Title: Re: How bad can these f#####s get?
Post by Tiannia on Jan 7th, 2008, 2:15pm
New, sorry you have to be here, but you need to understand that you are dealing with people who have been having these a hell of a lot longer then 6 months and 2 per week would be a god send for a majority of us.    Yes this is a supportive site, but when you are taking about one abortive that did not work for the 2 times that you get hit every week, you will get laughed at. It is not meant in a mean way, it is meant with all the love that we each have to the Beast that has climbed into your heads and set up shop.

I'm a baby in CH compared to a lot of people here.  Personally I started these chronic almost 5  yrs ago. Started out with 4 a day and went up from there. I got hit every night, at work did not matter and had them for almost 4 yrs straight. After a year, I finally got injectable trex and I used the trex tip to the left for 2 yrs to abort. While I was trying to find a good neuro and hopefully find a preventative that worked.  If I had been given the chance to have them 2 times a week I would have jumped at it and fought thru them without meds and been happy as shit.    So dont get your panties in a bunch because someone is not dripping with sweetness.  

Trex pills don't work for crap, you need to talk to your doc and there are other forms of it, Nasel sprays and shots.  There are also preventative that you can try that will make it so that you dont have to take an abortive. and other abortives that might work better then tre for you, especially talk to your doc if you have any time of heart issues.   Each and every  person gets these different and what works for one does not work for another.  

There is a lot of information here and at OUCH.com that you can take to your doctor.  Until you can get into a Neuro, if you ins is going to want a ref etc, if you do your homework, there is a good chance that you will probably know more then the doc about it, so make sure you read alot, bring the info to your doc and make sure that your appt has the time needed for you to talk to him/her about it.    
Title: Re: How bad can these f#####s get?
Post by colorsoverall on Jan 7th, 2008, 3:18pm
When I first found this site I started by reading the heartrenching testimonials, which blew my mind and I cried for everyone who was sufferung so much more than myself and I felt hope that if others could endure so much more than I could deal and move forward. After the responses I received I felt much more like this was a pissing contest and I was rediculously out matched. I recognize the pain is dramatically different from one to another.  But so are the circumstances that people face while dealing with this shit.  Case in point, I'm a single mom facing financial devastation.  I have no-one to help me and I'm battling anxiaty attacks and tears every moment of every freakin' day.  So even a mild ch attack in the scheme of things is pretty fuckin' awful when your alone and responsible for the care of your child.  This commentary may ban me from yall well so fuckin' be it! However, this guy is reaching out and shutting him down with "you haven't seen nothin' yet" attitudes is sort of counter productive to the point of this site  or maybe you should qualify the help offered.  If you don't hurt this bad then shut the hell up and quit your bitchin'.
Title: Re: How bad can these f#####s get?
Post by Linda_Howell on Jan 7th, 2008, 3:51pm

 
Quote:
However, this guy is reaching out and shutting him down with "you haven't seen nothin' yet" attitudes


UH.....excuse me????  No one shut him down at all.  Please re-read the title of the thread he started.  He was asking a question.  HOW BAD CAN THESE GET.  We answered his questions and everyone gave him advice that he asked for,  regarding Imitrex, etc.

I'm sorry you are a single parent dealing with these alone.  There are many like you,  right here.

[smiley=huh.gif]
Title: Re: How bad can these f#####s get?
Post by Melissa on Jan 7th, 2008, 3:56pm
I read everyone's repsonses and do not see ANYONE shutting the original poster down.  In fact, there was a lot of helpful advice.

Time to relax.
Title: Re: How bad can these f#####s get?
Post by monty on Jan 7th, 2008, 5:18pm

on 01/07/08 at 08:58:27, Charlotte wrote:
Brew, the melt version melts in the mouth.  I put it under my tongue.  I don't swallow it.  It goes into my system through the blood veins under my tongue.  It does not go through my digestive system.  I don't use any thing to abort that requires a glass of water because that will not work fast enough.  


Charlotte


Brewer might be right - the prescribing information says it takes longer for the MLT to get into the blood ... regular tablets take 1 to 1.5 hours to peak, while the orally dissolving takes 1.6 to 2.5 hours to peak.

http://www.merck.com/product/usa/pi_circulars/m/maxalt/maxalt_pi.pdf
Title: Re: How bad can these f#####s get?
Post by Groov on Jan 7th, 2008, 6:27pm

on 01/07/08 at 15:18:21, colorsoverall wrote:
When I first found this site I started by reading the heartrenching testimonials, which blew my mind and I cried for everyone who was sufferung so much more than myself and I felt hope that if others could endure so much more than I could deal and move forward. After the responses I received I felt much more like this was a pissing contest and I was rediculously out matched. I recognize the pain is dramatically different from one to another.  But so are the circumstances that people face while dealing with this shit.  Case in point, I'm a single mom facing financial devastation.  I have no-one to help me and I'm battling anxiaty attacks and tears every moment of every freakin' day.  So even a mild ch attack in the scheme of things is pretty fuckin' awful when your alone and responsible for the care of your child.  This commentary may ban me from yall well so fuckin' be it! However, this guy is reaching out and shutting him down with "you haven't seen nothin' yet" attitudes is sort of counter productive to the point of this site  or maybe you should qualify the help offered.  If you don't hurt this bad then shut the hell up and quit your bitchin'.



I cant imagine you getting "banned" for having an opinion.

 Yes, some here do forget how frightening & confusing CH is at first.

But my advise to NC1244 is to stick around and listen & ask.

This has got to be the most supportive bunch of folks I've ever met. Yes, I got a little of the "it gets worse" during my first post. But fortunately I decided to stay & learn.

These people have saved my life and I ain't hardly bullshittin' you.

  I personally don't think I could live with the nightmare some here do...the frequency & severity. But somehow they do which gives me the boot I will need if & when mine gets worse.

 Cheers, Dave
Title: Re: How bad can these f#####s get?
Post by vietvet2tours on Jan 7th, 2008, 6:30pm

on 01/07/08 at 15:18:21, colorsoverall wrote:
When I first found this site I started by reading the heartrenching testimonials, which blew my mind and I cried for everyone who was sufferung so much more than myself and I felt hope that if others could endure so much more than I could deal and move forward. After the responses I received I felt much more like this was a pissing contest and I was rediculously out matched. I recognize the pain is dramatically different from one to another.  But so are the circumstances that people face while dealing with this shit.  Case in point, I'm a single mom facing financial devastation.  I have no-one to help me and I'm battling anxiaty attacks and tears every moment of every freakin' day.  So even a mild ch attack in the scheme of things is pretty fuckin' awful when your alone and responsible for the care of your child.  This commentary may ban me from yall well so fuckin' be it! However, this guy is reaching out and shutting him down with "you haven't seen nothin' yet" attitudes is sort of counter productive to the point of this site  or maybe you should qualify the help offered.  If you don't hurt this bad then shut the hell up and quit your bitchin'.


 Bye Sherri
Title: Re: How bad can these f#####s get?
Post by Groov on Jan 7th, 2008, 6:48pm
Dang Potter, you have the innate ability to  say a lot with only 2 words.  ;)
Title: Re: How bad can these f#####s get?
Post by vietvet2tours on Jan 7th, 2008, 6:51pm

on 01/07/08 at 18:48:40, Groov wrote:
Dang Potter, you have the innate ability to  say a lot with only 2 words.  ;)


It's the cowboy way.

             Potter
Title: Re: How bad can these f#####s get?
Post by Annette on Jan 7th, 2008, 7:01pm

on 01/07/08 at 18:30:57, vietvet2tours wrote:
 Bye Sherri



Sherri is not a single mum facing financial devastation and she is not alone without any help. She is married and has a lot of friends who care a lot about her and she is doing very well financially.

I dont think this is the same person.

Title: Re: How bad can these f#####s get?
Post by Groov on Jan 7th, 2008, 7:10pm
Whomever she is Annette....she outta at least sign her name or let others know who she is.

If not, her post wont be taken too seriously I think, due to lack of conviction on her part...just my opinion.

Cheers, Dave
Title: Re: How bad can these f#####s get?
Post by vietvet2tours on Jan 7th, 2008, 7:10pm

on 01/07/08 at 19:01:36, Annette wrote:
Sherri is not a single mum facing financial devastation and she is not alone without any help. She is married and has a lot of friends who care a lot about her and she is doing very well financially.

I dont think this is the same person.


      Yer assuming I meant...... Who?
Title: Re: How bad can these f#####s get?
Post by Tiannia on Jan 7th, 2008, 7:29pm
We go thru this what, once a year?  Someone gets pissy because no one gets kid gloves here.  This is a bit different board then oter ones, but with what we deal with, as sufferers or supporters. This is what works for us.  Support when we need it and a good swift kick in the ass when we get off track.
Title: Re: How bad can these f#####s get?
Post by Mr. Happy on Jan 7th, 2008, 7:29pm
God damnit, Potter, it's You're, not your.

Always glad to contribute.
RJ
Title: Re: How bad can these f#####s get?
Post by Linda_Howell on Jan 7th, 2008, 7:40pm

  The point of her bitching at us was that we were not supportive because when HE asked if these can get worse or how bad can they get....we told him.  We answered that  question, as well as others that he had.  

 She chose to not understand anything and then got nasty with us and  deletes her profile.

 Makes no sense to me..but as teens always say while rolling their eyes...WHAT-EVER!!! [smiley=laugh.gif]
 
Title: Re: How bad can these f#####s get?
Post by Tiannia on Jan 7th, 2008, 7:57pm

on 01/07/08 at 19:40:30, Linda_Howell wrote:
  The point of her bitching at us was that we were not supportive because when HE asked if these can get worse or how bad can they get....we told him.  We answered that  question, as well as others that he had.  

 She chose to not understand anything and then got nasty with us and  deletes her profile.

 Makes no sense to me..but as teens always say while rolling their eyes...WHAT-EVER!!! [smiley=laugh.gif]
 



Linda I love you !   ;;D
Title: Re: How bad can these f#####s get?
Post by vietvet2tours on Jan 7th, 2008, 8:02pm

on 01/07/08 at 19:29:34, Mr. Happy wrote:
God damnit, Potter, it's You're, not your.

Always glad to contribute.
RJ


   I assume you're still stealin money from kids.

          Potter
Title: Re: How bad can these f#####s get?
Post by Annette on Jan 7th, 2008, 8:08pm

I agree totally with the way the topic has been handled here and I dont know who Colorsoverall is and I am not taking what she said seriously at this point since she deleted that profile and didnt say anymore.

However, I have seen genuine CHers in need being driven away ( although rarely ) because they have a different opinion to the norm here and I think that is regrettable.

There is only one lady here with the name Sherri and I didnt think Colorsoverall is the same person.
Title: Re: How bad can these f#####s get?
Post by purpleydog on Jan 8th, 2008, 8:58pm

on 01/07/08 at 17:18:35, monty wrote:
Brewer might be right - the prescribing information says it takes longer for the MLT to get into the blood ... regular tablets take 1 to 1.5 hours to peak, while the orally dissolving takes 1.6 to 2.5 hours to peak.

http://www.merck.com/product/usa/pi_circulars/m/maxalt/maxalt_pi.pdf



This is what my doc told me about Maxalt MLT. I took these for my migraines for awhile. The reason they melt in your mouth, is in case you have bad nausea with the migraine, and tend to puke up everything.

They do take longer to work, and they last longer than trex. I used them until I couldn't stomach that fake peppermint taste they have. Then I used the pills. Still takes too long to affect a hit though, at least for me.


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