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Topic: How bad can these f#####s get? (Read 1678 times) |
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newcluster1244
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How bad can these f#####s get?
« on: Jan 6th, 2008, 6:19pm » |
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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?
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cash5542
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Re: How bad can these f#####s get?
« Reply #1 on: Jan 6th, 2008, 6:24pm » |
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What are you using for preventitives? Do you have access to oxygen? With this information I'm sure more people can help you.
Charlotte
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newcluster1244
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Re: How bad can these f#####s get?
« Reply #2 on: Jan 6th, 2008, 6:28pm » |
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I haven't tried oxygen. Does it work? My doctor gave me Imitrex, but I haven't noticed any results yet.
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zwibbs/Scott
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Re: How bad can these f#####s get?
« Reply #3 on: Jan 6th, 2008, 6:39pm » |
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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!!!
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Annette
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Re: How bad can these f#####s get?
« Reply #4 on: Jan 6th, 2008, 7:58pm » |
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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.
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chewy
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Re: How bad can these f#####s get?
« Reply #5 on: Jan 6th, 2008, 8:02pm » |
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Is the imitrex in pill form?
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artonio7
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Re: How bad can these f#####s get?
« Reply #6 on: Jan 6th, 2008, 8:05pm » |
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What are you headaches like? Can you describe them... how often do you get them?
with warm regards,
Tony
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Jonny
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Re: How bad can these f#####s get?
« Reply #7 on: Jan 6th, 2008, 8:08pm » |
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on Jan 6th, 2008, 6:28pm, newcluster1244 wrote:| My doctor gave me Imitrex, but I haven't noticed any results yet. |
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LMMFAO! 
No results huh?
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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newcluster1244
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Re: How bad can these f#####s get?
« Reply #8 on: Jan 6th, 2008, 8:15pm » |
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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.
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Linda_Howell
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Re: How bad can these f#####s get?
« Reply #9 on: Jan 6th, 2008, 8:17pm » |
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Quote:| I'm at about two per week right now with some weeks better than others |
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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
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newcluster1244
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Re: How bad can these f#####s get?
« Reply #10 on: Jan 6th, 2008, 8:19pm » |
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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.
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chewy
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Re: How bad can these f#####s get?
« Reply #11 on: Jan 6th, 2008, 8:24pm » |
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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.
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purpleydog
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Re: How bad can these f#####s get?
« Reply #12 on: Jan 6th, 2008, 8:35pm » |
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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.
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cash5542
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Re: How bad can these f#####s get?
« Reply #13 on: Jan 6th, 2008, 8:36pm » |
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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
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Jonny
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Re: How bad can these f#####s get?
« Reply #14 on: Jan 6th, 2008, 8:37pm » |
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on Jan 6th, 2008, 8:15pm, 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. |
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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.
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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chewy
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Re: How bad can these f#####s get?
« Reply #15 on: Jan 6th, 2008, 8:53pm » |
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Quote:| My doctor gave me Imitrex, but I haven't noticed any results yet. |
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How are you using the imitrex? You know its an abortive and not used as a preventative right?
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Charlie
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Re: How bad can these f#####s get?
« Reply #16 on: Jan 6th, 2008, 10:48pm » |
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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
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Charlotte
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Re: How bad can these f#####s get?
« Reply #17 on: Jan 6th, 2008, 11:44pm » |
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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
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Maffumatt
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Re: How bad can these f#####s get?
« Reply #18 on: Jan 7th, 2008, 8:32am » |
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2 per week? Well I can safely say they can get a whole hell of alot worse.
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Brew
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Re: How bad can these f#####s get?
« Reply #19 on: Jan 7th, 2008, 8:52am » |
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on Jan 6th, 2008, 11:44pm, 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. |
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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.
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Charlotte
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Re: How bad can these f#####s get?
« Reply #20 on: Jan 7th, 2008, 8:58am » |
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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
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| « Last Edit: Jan 7th, 2008, 9:05am by Charlotte » |
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Brew
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Re: How bad can these f#####s get?
« Reply #21 on: Jan 7th, 2008, 9:23am » |
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on Jan 7th, 2008, 8:58am, 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. |
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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.
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aprilbee
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Re: How bad can these f#####s get?
« Reply #22 on: Jan 7th, 2008, 9:25am » |
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on Jan 6th, 2008, 6:19pm, newcluster1244 wrote:| I'm at about two per week right now with some weeks better than others. |
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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!
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Re: How bad can these f#####s get?
« Reply #23 on: Jan 7th, 2008, 9:48am » |
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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
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Tiannia
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Re: How bad can these f#####s get?
« Reply #24 on: Jan 7th, 2008, 2:15pm » |
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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.
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