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ready2chat
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New at this
« on: Nov 27th, 2002, 10:23am » |
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This is new to me so if I screw it up you will all know why. I have had cluster headaches for several years now and usually they only come once a year. This year they started the end of September and have continued through last night. They usually come on shortly after I fall asleep. I have been afraid that there was some thing really wrong with me because of the time frame this has lasted until I got on this site. I am currently using imitrex and taking soma. I am just wondering if anyone else has them last this long and if so how do you break the cycle???????
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eyes_afire
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Re: New at this
« Reply #1 on: Nov 27th, 2002, 10:46am » |
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Hello and welcome. Unfortunately some of us have longer cycles. My current cycle is 14 months long  . My first best advice:
1. Explore this site to the fullest. It's packed with info.
2. Find a good neurologist.
Most meds are just to keep the cluster headaches under control, not break the cycle. If you're sure you have cluster headaches, then in my opinion, verapamil is the best preventative med to try first because it can be very effective and doesn't have as many side effects. Oxygen is the best abortive med to try first for the same reasons, however imitrex injections may prove to be more effective and convenient (but much more expensive). Prednisone is often used to keep cluster headaches under control until the verapamil takes effect (it takes 1 or 2 weeks for verapamil to become fully effective).
If you're interested in 'breaking' a cluster cycle:
Some people have broken a cluster cycle with I.V. DHE. It requires a hospital stay.
Follow these links for another option that has helped some of us here break a cycle. It is controversial and is not appropriate for everyone. Read all the info before trying it.
http://www.geocities.com/clusterbusters2002
http://home.attbi.com/~rwold350/
I hope something here helps you.
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Still around... in a brand new world now...
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ChristineL
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Welcome and Happy Thanksgiving ;D
So you have had them about 2 months if I read what you said correctly? That isn't really very long for most of us. Read all the info on the left - it will give you lots of information. Why are you taking Soma for CH's? That is a muscle relaxer I believe and isn't usually used for Clusters. Imitrex is an abortive to help you get rid of the headache when you get one. You need to get on a preventative. Prednisone is also used to try and break the cycle which works for some and not for others. A lot of us have had good success with Verapamil. Oxygen is also a wonderful abortive. Print out as much info as you can, take it to your doctor and get on some good meds that can help you.
Chris L
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echo
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Re: New at this
« Reply #3 on: Nov 27th, 2002, 12:34pm » |
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REM sleep (rapid eye movement) often intices the beast to come out and party. It's like he's stuck behind your right eye and trys to push it out to see what's happening. Some find it helpful to use a drug to help prevent REM sleep from happening.
Sorry you're suffering. Hang in there.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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ChristineL
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Echo,
In this case is the Soma to prevent REM? I used it after back surgery to keep my muscles from cramping. I didn't know it could also be used as a sleep aid.
Chris L
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Linda T
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Re: New at this
« Reply #5 on: Nov 27th, 2002, 2:33pm » |
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Dear Ready: Hi and welcome. This last cycle of mine started last November and was a headbanger right through to about the middle of April of this year. Still shadowing on a daily basis. But now I'm med free (have been for about 3 weeks now).
Sorry you're having it rough right now - hang in there.
Wishing you all PFDAN always, Linda T
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What a long, strange trip it's been!
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echo
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Re: New at this
« Reply #6 on: Nov 27th, 2002, 2:49pm » |
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ChristineL.
I'm not familiar with Soma and therefore unable to offer an answer. I'm positive the collective intellect of this MB will be able to give you an answer to your question and provide me the knowledge I subsequently lack.
Happy Thanksgiving to you Christine.
Still can't see where Soma came up other than reply #2. I'm sure I'm missing it somewhere.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
Proud Dad of a US Marine, and a former Marine turned Police Officer.
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jonny
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Dramamine (SP?) is used to stop REM sleep.
...................jonny
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ready2chat
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Re: New at this
« Reply #9 on: Nov 28th, 2002, 7:54pm » |
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I am so thankful for all your replies. I was beginning to thing some how I was bringing this on myself and that maybe I was insane. However, after reading all these I know that you all have the same pain I do and some of you for a lot longer.( I don't know how you do it) It seems like every year I get these they last longer and longer. At first they were only a week or two and I thought for sure I wouldn't live through it but now I am covering weeks/months at a time and still plugging along. It is the most miserable thing I have ever experienced and would not wish it on anyone. In answer to the question about soma I believe it was given to me for anxiety. They said it was used for muscle pain but also as an anti-anxiety med and by late evening I am so worked up about maybe getting a headache that I am a wreck. I am so afraid of night to come I feel like a gremlin...when the sun goes down and the night approaches I become something I hate. I know for most of you the 8-9weeks we(my husband and two toddlers)have been through this year isn't much but for me it has been h**l. I just hope it stops soon and I am never forced to muster up the strength you all have found.
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domm
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Re: New at this
« Reply #10 on: Nov 28th, 2002, 8:39pm » |
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ready - hang on, its almost over for this cycle (I hope). Good advise up above. Find a good neurologist, get a preventative (verapamil works for many of us), use Imitrex and oxygen as abortives, and join OUCH to help us find a cure for this damn horrid condition. Stick around, we love to have new folks help us "row the boat"
PFDANs to you
domm
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Rusty
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Hi, I have been having HA for almost a year now, had 2 root canals and two mouth guards before being diagnosed with CH. I am still looking for answers, and so is my GP. He has me scheduled for a CT just to check everything out. The HA's usually wake between 2 - 4 am but fortunately last only 30 - 45 minutes.
Hope you find an answer! 
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Charlie
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Re: New at this
« Reply #12 on: Nov 29th, 2002, 4:02am » |
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Welcome aboard and we all know how you feel and what it does. There is some great advice here and keep reading and contribute. This a place to rant.
You might try sleeping in a recliner. I was often able to eliminate at least one HA that way.
Below is a technique that has worked for some here and I had very good luck with it. Here it is:
Dr. Wright's Circulatory Technique
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
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ready2chat
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Re: New at this
« Reply #13 on: Dec 3rd, 2002, 8:32pm » |
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I am very curious about this technique you are referring to. Is this information on line somewhere? Maybe I am brain dead  and missed something but would really like you to explain what it is you do during these attacks. Thanks so much for your info. 
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fubar
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Re: New at this
« Reply #14 on: Dec 3rd, 2002, 9:32pm » |
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Hi and welcome! You have found help.
Everybody is different, so I won't tell you this is the cure for you, but I just ended a horrible cycle by using the methods Charlie talks about. For me, it was 100% effective and immediately ended my cycle. This is the first time I have tried it, so I can't confidently say it works. Hell, I may have been ending my cycle anyway, but I know this... I haven't had one shadow or cluster since the day I tried it.
I have reached the point where I will try just about any thing that sounds reasonable to end this pain. After more than 15 years of hell, I have new-found confidence that I can manage this thing right out of my daily hell, and I owe it all to this board. I'm damn happy to be a clusterhead.
-Fu
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channon
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Re: New at this
« Reply #15 on: Dec 11th, 2002, 5:01pm » |
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Would somebody please explain this technique that has been mentioned? I am willing to try anything, but do not understand how to redirect the blood from my head to my hands.........considered a turnicutt, and if this doesn't stop I may still try it!!!! ??? ???
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SommelierCH
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Re: New at this
« Reply #16 on: Dec 11th, 2002, 5:21pm » |
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To the Newbies,
As always a double edge welcome. Sorry you had to find us, but glad you are here. Put on a hard hat, mouth guard and thigh high boots and wade right in.
What works for me is a triptan, Maxalt MLT 10mg. (fast acting, under the tongue dissolving tablet) combined with oxygen therapy. You can’t get many Maxalt tabs from insurance (6 per month max. for me) so you have to save those for the Big One and you can’t take more than 2 in any 24 hour period, so the oxygen is absolutely necessary for all the other times you feel the shadows creeping in. Go to the search button in the top right corner and type in “oxygen” and read up. This site is your one stop information resource, so start reading all the categories on the left hand side of the page, read it all, the more knowledge you have the better you can communicate with the medical community. Be sure to read about and do a search for “triggers”, these are catalysts that can really set us off. My triggers are alcohol (even the smallest amount, like a non-alcoholic beer) and bright light in my right (cluster side) eye. When I feel the shadows creeping in I hit the Oxygen and that pushes them back. However, when I’m asleep I can’t feel the shadows increasing and I wake up with the Big One. Jonny clued me in that if you take abortive triptans (I use Maxalt MLT 10mg. or Zomig ZMT 5mg., both are quick dissolving tabs) before going to bed, they can prevent that night time attack, especially if you get hit, like I do, within 2 hours of going to sleep. The half-life of both of these tabs is in the 2-3 hour range. This has enabled me to get quality sleep these last 2 weeks. (thanks again, Jonny). Avoiding triggers during your cycle can dramatically affect the intensity, duration and number of attacks.
The cumulative amount of knowledge residing within these people on the board, is amazing. Give them as much info about your problem (see “Hints for your first post”) and they will be able to help that much more.
Good luck, friends,
David J.
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tanner
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Re: New at this
« Reply #17 on: Dec 11th, 2002, 5:51pm » |
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dear ready, welcome from another newbee, i'm not entirely typical so i'm not sure this will help but during my attacks i put on loud music and dance (almost tai bo like) throwing punches, kicking, and jumping around all while holding 5 lb. dumbbells. now that i read charlie's post i suspect thats what i may be achieving in a much noisier way. not gonna do ya much good if you have middle of the night attacks unless you have a sound proof booth.
when i was in remission i was taking soma compound as a sleeping pill... not sure thats a good thing during the cycle. ask around
nice ta meetcha
tanner
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StanTheMan
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Re: New at this
« Reply #18 on: Dec 11th, 2002, 7:49pm » |
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Dittos to what David shared about using Maxalt before bed.
That's exactly what I did during my last cycle. Works pretty darn good!
I was fortunate enough that my neuro gave me a bunch of samples of Maxalt when I visited him. (What a lifesaver!)
Belated greetings to the new folks here!
PFDAN.
StanTheMan
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Charlie
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Re: New at this
« Reply #19 on: Dec 11th, 2002, 9:47pm » |
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If this is the thing I post, here it is. I cannot add to it. It's the best I can do. It's much more than I got from the doctor:
Dr. Wright's Circulatory Technique
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
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