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amen
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looking for suggestions
« on: Jul 21st, 2005, 10:30am » |
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Ok, first of all sorry i haven't been around much but my computer at home puked out a while ago and i have not had a chance (or money to replace or fix) i have limited internet access at home. (only when hubby is not using his work laptop for work) So, since i have been absent for so long PF days to all!!! Sorry i haven't been supporting.
Background- I started getting these "headaches" around the age of 20. (I just turned 34) I was repeatedly misdiagnosed until about 1 1/2 years ago. That was when i found this place. My doctor first prescribed me with vicadin. (yeah right) It did nothing. I told him that and then he prescribed me with Fiorinal(with aspirin not codiene). When i posted that here, i got alot of flack about how that was not what i should be taking. I ignored it because, well it seemed to help. It never really totally aborted but it was enough to take the edge of so that I could at least function while being hit. (i have a full time job, 4 kids, and 2 small side businesses so being able to function at all times is a neccessity) I am sure most of you can relate to the fact that if you find something that at least slightly works, you are going to stick with it. Then i took some of Thomas's suggestions and bought some melotonin (not sure of spelling there) I also thought that just for the hell of it, i would also try a cranial sacral massage. Well around the time i did both, the cycle ended. I could not be sure of why though. I had already been in cycle for 3 months at this point so i wasn't sure if it was just time for the beast to go, or I had actually gotten some relief from these "trials".
Note: strangely, although when i first started getting these, the cylce would come every year to year and a half and last for about 2-3 months. Then all of sudden i went 6 years PF until a year and half ago when i found this sight. Also with exception of the last cycle that started in September and ended in December, all of the other cycles tend to come when the weather is hot and humid. I live in Michigan so i usually start a cycle between the May-August months.
Here is wherer i am looking for suggestions. I started a cycle again about 4 weeks ago (June 22 to be exact).
I started the melotonin before bed every night. (I have only had a couple of times where i have been awoken in the middle of the night by the beast. I am guessing that part must be working. My HA hit regualarly in the mornings between 6-10 am, occassionally I will have one during the day, then again regularly between 5-8PM, and then occassionally around 10PM.
My doctor has me on the Fiorinal again. I didn't go in and see him though i just called and told him "it's back" and he has been calling in the script. My concern now is that the fiorinal has been becoming less and less affective and i am concerned about the "habit forming" possibility. Since the beast has been back i have been doing research on clusters again and on the fiorinal. I have yet to find a case where the fiorinal is prescribed for clusters specifically. I have read about it being prescribed for tension headaches, and "repeated headaches, but not clusters specifically. I have been debating on whether to seak out a headache specialist or to print out all of the information i have found and take it to my doctor. I am just looking for suggestions on the the safest, first lines of action to suggest to him other than the oxygen. He did give me samples of imitrex and zomig the last time for me to try and see if they helped and they did not. Later I learned that oral forms are not as effective as nasal and injection. (i had the oral form)
sorry this is so long. Any suggestions would be greatly appreciated and i promise i won't ignore the advice this time. I believe that the people who deal with this on a regular basis probably know more than most doctors about it.
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thomas
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Re: looking for suggestions
« Reply #1 on: Jul 21st, 2005, 10:37am » |
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Hey there, nice to see you! How much of the melatonin are you taking and are you using any "time-release" melatonin? As far as getting through the day, a good technique for me, is taking either zomig or amerge ORALLY and using with O2 to abort, the zomig and amerge both give a good 4-6 hours of pf time, much better than imitrex in my opinion. So when you get hit in the morning, you take a zomig or amerge pill, breathe O2 at 12-15 lpm, then when it's over you should be able to get through a large portion of the day with no attacks.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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amen
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Re: looking for suggestions
« Reply #2 on: Jul 21st, 2005, 10:56am » |
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Thanks Thomas. I will check with my doctor on the amerge and zomig.
I am taking 3-4 3mg pills of the melatonin each night. I am not sure if it is a time release form or not. I will check that tonight.
Otherwise i am doing great. How about you?
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thomas
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Re: looking for suggestions
« Reply #3 on: Jul 21st, 2005, 11:19am » |
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Doing great, gonna be married in two days! Is you melatonin 3mg? If so, you want to take half normal melatonin and half time-release (available at most GNC stores) that should get you all the way through the night, so you would take two pills of each kind of melatonin. If you try zomig or amerge, they are just like any other triptan, you can only use one of them, do NOT combine them or take both kinds in the same 24 hour period! Glad you are doing great aside from the CH. 
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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amen
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Re: looking for suggestions
« Reply #4 on: Jul 21st, 2005, 11:47am » |
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Congratulations!!!
Thanks for the info too!!!
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RichardN
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Re: looking for suggestions
« Reply #5 on: Jul 21st, 2005, 12:21pm » |
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Hi Amen
...... "other than the oxygen" . . . . ? ? ?
Have you tried 02 and it didn't work for you or are there other reasons you don't want to try it. It's my only abortive (can't take triptans), and I wouldn't be without it. I can kill the beast in minutes (if caught early).
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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amen
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Re: looking for suggestions
« Reply #6 on: Jul 21st, 2005, 12:27pm » |
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I am not against oxygen and plan to discuss this with my doctor. I am just concerned because i have read about Rebounds with O2 and I also want to have something as an alternative for when i can't use the O2 if that's the route i take. There is NO privacy in the office I work in. Not even cubicles and the restroom is a single stall for all right next to the MGR's desk.
I had a feeling that some one would ask that.
Thanks.
Andrea
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amen
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Re: looking for suggestions
« Reply #7 on: Jul 21st, 2005, 1:14pm » |
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I just wanted to say that i did not mean to insinuate that we don't all have the need to be "functional" in our lives. i was just reading over my post and realized that it kind of sounded like i was saying that because i have all these things going on that i have more of a need to be functional. Hope i didn't offend anyone.
Andrea
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seasonalboomer
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Re: looking for suggestions
« Reply #8 on: Jul 21st, 2005, 1:52pm » |
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on Jul 21st, 2005, 1:14pm, amen wrote:I just wanted to say that i did not mean to insinuate that we don't all have the need to be "functional" in our lives. i was just reading over my post and realized that it kind of sounded like i was saying that because i have all these things going on that i have more of a need to be functional. Hope i didn't offend anyone.
Andrea |
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It'll take a lot more than that to offend this crowd.
so don't worry about it. there are many regular comments that are part all of our regular conversation here that I think most learn to let roll right off their backs. Yours wasn't even noticed by me.
Other examples are when episodics say something like, "well, i'm episodic, and I just don't what I'd do if I was chronic." While seemingly empathetic, if I was a chronic I'd be muttering under my breath. You can't overly sensitive about who you might offend as everyone's heads are different and people's values when it comes to treatment are very different. Some people may think nothing about trying every pharmaceutical on the planet if it could possibly help, others don't want to risk the side effects of any pharmaceutical and will only go au' natural. And there's answers for everybody. The main thing is to ask, and ask and ask, and try and try and try. And FIGHT.
If the doc you're seeing won't learn more about what is working, even if you take him the printouts available here, then find another doc. If you're in Michigan still (whereabouts? I'm originally from Berkley) there are some good doc's up there. See the links on CH.com. Learn everything you can so some doc can't waste valuable quality of life for weeks trying some bullshit when something that works is available and you can make him aware of it.
Good luck,
Scott
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amen
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Re: looking for suggestions
« Reply #9 on: Jul 21st, 2005, 2:06pm » |
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Thanks. I just wanted to clarify because back when i first came here a couple years ago, I started a couple of post that got out of hand. I know some people here can be touchy. Not that we don't have the right to be due to what we go through.
I understand what you were saying about "i don't know what I would do if I were chronic". I am just thankful that i am not. But who nows, someday I may become chronic right? I can't imagine it, but if it happens, I will find a way to make through that as well. My dad used to get these headaches and was never properly diagnosed. Before i was diagnosed, i just knew that I got the same kind of headaches as my dad whatever they were. I am happy to say he has been PF for about 5-6 years now and I am so happy for him. The benefit of having a family member with these is that you have a supporter that you can talk to and who understands. I think about him and never having been diagnosed, and he never was given proper meds and there wasn't as much available then as there is now, I hold a lot of respect for him. He went through his life with these drug free. Anyway, now I am going off in a way different direction sorry.
I have cofidence that my doctor will take the information that I gave him and work with me on it. If not then I will move on. I at least want to give him a chance, he has been my doctor since I was 12, he has delivered 3 of my 4 babies and the 4th wasn't delivered by him only because he was out of town. So basically I have a lot of confidence and trust in him so I am going to give him the chance.
I live North of Ann Arbor/Brighton area.
Andrea
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seasonalboomer
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Re: looking for suggestions
« Reply #10 on: Jul 21st, 2005, 2:33pm » |
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on Jul 21st, 2005, 2:06pm, amen wrote:| I just wanted to clarify because back when i first came here a couple years ago, I started a couple of post that got out of hand. I know some people here can be touchy. |
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Not here!
Must'a been some other website....... 
I understand your loyalty but being "nice" with regard to cluster care is a good trait to dispense with when it comes to treatments. If a doctor gives you something that you research as being borderline effective or not effective at all, that physician (yes, that physician) has not done you a service and is culpable every time you get a hit for wasting your time. If he's not up on what is happening with Cluster headaches and you know this about him and you take what he gives you even though you might have learned better you get to join him in that responsibility. Knowledge is power here, don't waste it.
Best intentions only here. But don't allow yourself to be not only a victim of cluster headaches but a physician that isn't specifically knowledgeable about your illness.
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amen
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Re: looking for suggestions
« Reply #11 on: Jul 21st, 2005, 3:07pm » |
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Thank you for the advice and i agree. I haven't yet told him that the fiorinal isn't working, and I just started researching it myself. By the time he put me on it before, it was towards the end of my cycle. So I really have not yet given him the chance to prove to me that he is open for suggestions. I wanted to do my homework first and be armed with knowledge before i approach him on this. That is partly why i started this post. i want to have as much info as possible before i see him. I have printed out many pages of information in the last couple of days to take with me. The problem with being episodic is that many times by the time you do a few trials with meds, the beast is gone until next time. He had just diagnosed me when i had my last cycle and at that point i had never heard of CH. I didn't know if what he was giving would work or not. I don't think he knows alot about CH either but if he is willing to learn after i bring him info then I will continue to work with him. If he pulls the "I'm the doctor and I know more than you no matter how much reading you've done!" Then it's SEE YA and i will move on. I would just like to stay with the same person who knows my medical history for the past 12 years, and what meds i react bad to and what trauma's I have had and all of that.
Thanks
Andrea
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unsolved1
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Re: looking for suggestions
« Reply #12 on: Jul 21st, 2005, 3:23pm » |
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Something to keep in mind:
There is a good headache clinic in Ann Arbor. The Michigan Head Pain & Neurological Institute (MHNI)
http://www.mhni.com
Dr. Rozen is a very respected doctor. He has alot of knowledge about cluster headaches and has written several publications about headaches and cluster headaches.
PF wishes
Unsolved
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amen
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Re: looking for suggestions
« Reply #13 on: Jul 21st, 2005, 3:32pm » |
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Thank you. I have read about that place on the internet. I have heard good and bad things about it but I have not ever gotten a specific name for a specific doctor. I will keep that in mind.
Sometimes I feel like such a wuss with these things. It's like yeah, I get clusters and they hurt like hell, but then i think to myself, there are people out there who get more hits per day or have less remission times than i do so why can't i just suck it up. But then I get hit and i don't care how big of a baby I am I want some damn relief and I want it now!!!
Sorry, had to vent for a minute.
Thanks
Andrea
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seasonalboomer
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Re: looking for suggestions
« Reply #14 on: Jul 21st, 2005, 3:43pm » |
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on Jul 21st, 2005, 3:32pm, amen wrote:Thank you. I have read about that place on the internet. I have heard good and bad things about it but I have not ever gotten a specific name for a specific doctor. I will keep that in mind.
Sometimes I feel like such a wuss with these things. It's like yeah, I get clusters and they hurt like hell, but then i think to myself, there are people out there who get more hits per day or have less remission times than i do so why can't i just suck it up. But then I get hit and i don't care how big of a baby I am I want some damn relief and I want it now!!!
Sorry, had to vent for a minute.
Thanks
Andrea |
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Don't minimize your suffering ever. As a past midwesterner, that is part of that midwestern, "suck it up" thing that I've tried hard to get past myself. Kind of that, "I know my leg is frostbite up to my knee, but look at Joe, his whole leg fell off 20 miles back, what am I complaining about." Stiff upper lip and all that bull.
Get what you need.
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thomas
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Re: looking for suggestions
« Reply #15 on: Jul 21st, 2005, 3:44pm » |
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Andrea, it doesn't matter how many times a day you get hit, these damn things HURT! All of us sympathise with how much they can affect you while you are getting hit, don't feel like a wuss. You should see me when I get hit, now that's a WUSS.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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amen
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Re: looking for suggestions
« Reply #16 on: Jul 21st, 2005, 3:49pm » |
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You guys are funny and i am feeling better already. I am supposed to be working but oh well.
I am glad i came back here! I missed you guys!
I am just waiting for a butt chewing from Jonny for something I have said that he didn't like! LOL. But that's ok. i enjoy bantering with him too. He's a great guy!
Andrea
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thomas
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Re: looking for suggestions
« Reply #17 on: Jul 21st, 2005, 5:31pm » |
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on Jul 21st, 2005, 3:49pm, amen wrote:
I am glad i came back here! I missed you guys!
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Right back at ya kiddo!
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Kevin_M
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Re: looking for suggestions
« Reply #18 on: Jul 21st, 2005, 8:40pm » |
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on Jul 21st, 2005, 10:30am, amen wrote:My concern now is that the fiorinal has been becoming less and less affective...
He did give me samples of imitrex and zomig the last time for me to try and see if they helped and they did not. Later I learned that oral forms are not as effective as nasal and injection. (i had the oral form)
and I also want to have something as an alternative for when i can't use the O2 if that's the route i take |
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Hi Amen. I remember you because you were the only other active CH'er posting from Michigan a while back, now there's Kris too.
I had a hard time working with my gp on the CH too. Your's gave you samples of the pill form, which is not a successful abortive for CH, so if they didn't work, that wouldn't determine if a triptan will work in another form, the nasal spray or injs. Ask for samples of these and see if they work.
I take it you are in Livingston County? I'm in Macomb, but go to St. John's Chronic Headache and Migraine Institute in Oakland County, which is right in between us. My doctor from there left to open a private practice, but when I went in for the first time, and she read my prepared headache log of two weeks and past history of CH, I walked out with a script for oxygen, verapamil and trex without even having to ask.
Mike (Unsolved1) mentioned Ann Arbor too which is nearby. My gp was slow treating clusters too, so move on, when it comes to clusters, if he's not cooperative. There is help nearby.
and pm me anytime.
Kevin M
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| « Last Edit: Jul 21st, 2005, 8:45pm by Kevin_M » |
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marcelonyc
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Re: looking for suggestions
« Reply #19 on: Jul 22nd, 2005, 2:37am » |
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amen,
i know what you mean about barely being on the right track of medication management when the cycles end. it was a long time before i found this very helpful site that i would go through the start/stop cycles; always unpredictable.
what has been working for me is the sumatriptan injections and lithium. i tried the spray and pills before. i have not tried oxygen yet, and as i am currently PF, don't feel to get it, as my insurance will not pay for it. like each cycle is different so is treatment for everyone. and what works for one cycle may not for anothe.
regardless, keep your doctor, and check out MHNL. you're not moonlighting. i have a doc, a neuro, a psychiatrist and a "pain specialist" at columbia/presbyterrean in NYC. and they all serve different ailments, so don't feel like you are abandoning your family doc you share so much hisory with.
pf wishes and courage, amen.
marcelo
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Topical
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Re: looking for suggestions
« Reply #20 on: Jul 22nd, 2005, 5:18am » |
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amen, Oxygen is the best treatment for aborting CH, if you have not tried it you really should. It does not cause rebound headaches. You may be thinking of Imitrex injections. O2 is now the "treatment of choice" as of 2/05 according to this article: http://www.aafp.org/afp/20050215/717.html
It has no side effects if used as prescribed. Other drugs can not make that claim even when they are used as prescribed.
Have a look at the article. I am sure it will help you out.
Take care and I hope things go well.
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