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D_Robinson
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Hi I am new and I have a few Questions
« on: Apr 10th, 2006, 9:52pm » |
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Hi everyone I have been having Cluster Headaches since roughly 1991. I smoke, do not drink, but do drink a lot of soda pop, used to drink a lot of diet soda pop. I have not had a head injury, or any head trama. my quandry is I started out on a one month on and 15 month off from like 1991 to roughly 1999 and then this cycle started extending to like 18 then to 22 to its current 32 months. I removed diet soda pop from my diet, but I am wondering since a lot of research I have done relating to vascoconstricors(sp?) am I screwing myself by smoking and drinking soda pop. The meds my doctor has me on has me desiring cigarettes less and drinking more water then anything else. I am wondering if I can stop smoking and stop drinking anything with caffiene in it can I wall away from these cluster headaches permanently.
I am wondering if anyone else has had anything similar happen to them since as I get older these headaches seem to get more intense and more insurmountable then the used to be. If I was as out making sales calls even a couple years ago I could just pull over and relax and calm down and ride it out even before the new medications came and now even with the new meds I just want to get home and sleep.
I wish I would have found this group years ago.
David
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AussieBrian
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Re: Hi I am new and I have a few Questions
« Reply #1 on: Apr 10th, 2006, 10:46pm » |
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G'day, Dave, and welcome aboard. Sorry a bit slow replying but everyone seems more caught up on the General Posts board than what we're really here for.
Regarding smoking, general consensus seems to be that while more CHeads smoke than is the national average there appears to no real link between the two. Those who have quit have seen no benifit regarding their headaches.
As to your soda drinks, I must say that many people get serious relief from the likes of Red Bull because of its caffiene content, so who knows.
For many of us it's a matter of finding the triggers and avoiding them.
Hope this helps,
Brian.
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Skyhawk5
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Re: Hi I am new and I have a few Questions
« Reply #2 on: Apr 10th, 2006, 10:55pm » |
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David, Welcome to the site but sorry you had to find it. I'm realtively new to the site but not the pain. There's a lot to learn from the site itself and from people that know what it's like to suffer Cluster Headaches.
Cycles can & do vary for a lot of us. Mine have. The Pop, I haven't heard of this being a trigger. Stopping cigarettes, while healthy, hasn't been shown to cure CH.
What Meds are you using, Oxygen? Welcome again!
Skyhawk5, Don
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MJ
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Re: Hi I am new and I have a few Questions
« Reply #3 on: Apr 11th, 2006, 12:52am » |
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Welcome home D Robinson.
Its certainly worth a try to stop smoking especially if the desire is waning. The soda pop too. No doubt there would be an improvement in your general health. I have heard others mention aspertame and sugars can be triggers for them.
I am of the belief when it comes to myself and clusters that anything that will provide a stimulating effect is helpfull, ie; caffeine etc..
Also for me any relaxation does not help.
What meds are you taking? I would look at those too.
Can you walk away from clusters I certainly hope you can but to date sad to say, just a few have. You deserve a break.
Read around on this site and all the links to the left, ask more questions and you may find something to help.
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MJ
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marlinsfan
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Re: Hi I am new and I have a few Questions
« Reply #4 on: Apr 11th, 2006, 7:41am » |
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Hey D, welcome to the nuthouse.
As MJ mentioned, aspartame (the stuff they make Equal out of) is a trigger for me. When in cycle, I don't touch the stuff.
As for caffeine, it's a good abortive for many of us.
Read a lot, there's loads of info here. Everybody is different, that's what makes the beast such a pain. This document has good info on meds. You didn't mention what you use to battle the beast, so this may help ya.
http://www.brightok.net/~mnjday/chtherapy.pdf
PF wishes.
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D_Robinson
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Re: Hi I am new and I have a few Questions
« Reply #5 on: Apr 11th, 2006, 9:03am » |
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The addititives in aspartame espeically the wood acohol is what I think was a trigger for me. I had done quite a bit of reading and found some interesting and shocking things about this little additiitve. One if any of you look at the bottle of diet soda and regular soda, and how long they are good you will see regular soda is good for you will see a very big difference is dates. Also you will see a temp range recommended on the diet soda that is not on the regular soda. It is there due to the addititves in the aspartame. These additives have a problem above 85 degrees F. I drank a lot of diet soda and well still drink a lot of soda now now too much actaully to a point where i put on roughly 40 lbs after stopping drinking diet soda. Smoking wise I smoke about a pack and a half a day.
Meds wise the preventative I am on now is Topamax, I used to take Sansert, but it is no longer made, but it really never worked that well. I take Zomig for when one get thru through the Topamax. that happens between one to two times a day. I have only had one time where it has happened three times and I just dealt with it which really sucked, but my daughter really helped my thruogh it and kept me from doing anything really stupid. I tried O2 and it did not seem to do very much for me, but again that was years ago and at that time these things could go for maybe and hour or I could have them for like 10 hours in succession.
Ok back to my idea or theory. On my off time I life is good and I screwing my body up with nicotine and caffiene freely and at some point my body chemistry has had enough and then headaches return. I am thinking if I remove these items during my off time maybe I can get my body chemistry back closer into tune where maybe the headaches may not return.
A bit more history on this. I have to research a bit more here, my doctor is helping here since my first bout with these I think was thought to be a synis infection, and she is going thruogh the clinic's records to check ( my nurologist and general are at the same clinic). At the time I had this supposed infection I was selling cars at a small dealership were three other gentlman smoked and one was almost constantly smoking. You could cut the air with a knife. We never really put much thought into it since it was a small office and if we had a customer we took them over the the new car department to a empty office where we would have some peace and quiet to discuss price and such. I spent 4 months there and 1 month with this supposed infection. I have to verify a time span, but I am thinking it was roughly 15 months before I saw my nurogist for the first time.
I know all of this is really disjointed, but I am reading so much here and well i am a bit over my head research wise, but all of the Bioclock stuff got my thinking about what I am putting into my body and what it is doing to my on my off cycle.
Thanks for all you kind words,
David
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Garys_Girl
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Re: Hi I am new and I have a few Questions
« Reply #6 on: Apr 11th, 2006, 10:50am » |
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David:
Sorry to have to welcome you here. Like you, we wish we'd found this place sooner.
From what I've read at this site and through many links available here, for many the clusters become more frequent and intense with age.
Perhaps it is because people continue with old patterns, though many clusterheads have been disciplined enough to take the time to document what they eat, drink or otherwise ingest to determine if there's a "trigger" link between what they put in their bodies and the attacks.
If your body is urging you toward a healthier lifestyle, by all means go for it! While it may or may not help with the cluster attacks, it will certainly be better for you over the long run. I, for one, believe that our genetics basically determine how long we live, and how we live our lives may change that by a few years. But, more importantly, how we live our lives definitely affects the quality of our "senior" years.
Unfortunately (?), there are many clusterheads out there who never smoked or drank. I mean "unfortunately" from the perspective that it kind of shoots that part of the "lifestyle" theory in the foot.
Re: 02. You mention that you tried it many years ago. Were you using a NON-rebreather mask? And was the 02 being delivered at a very high rate (like 10 - 12 lpm)? This makes ALL the difference between success in aborting an attack or not.
I do think working towards a healthier lifestyle, and, perhaps more importantly, working towards "correcting" or "resetting" your body clock may help. The relationship between sleep apnea and those with clusters tracks far more closely than those who smoke and have clusters. I think there's a lot to the "body clock" problem in relation to clusters. Have you tried Melatonin combined with calcium and magnesium? Many clusterheads have been shown to have lower levels of magnesium in their brains (same with those who suffer migraines).
Good luck - and this place is chock full of very useful information, so keep reading (now that you've found it)!
Wishing you luck and pf days ahead,
Laurie
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Laurie
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NotH20
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Re: Hi I am new and I have a few Questions
« Reply #7 on: Apr 11th, 2006, 1:36pm » |
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David,
Did I understand you correctly....your headache lasts for 10 hours 
I'm not diagnosing you, but that's not typically a cluster trait.
For me, smoking or not smoking has not helped or hurt my cycles. I also don't think that the sugar in the soda's has helped or hurt as well. Some ch'ers use Red Bull and other caffiene stimulants and have had great success with them.
Keep us posted....try the O2 again. It may work for you this time - check the link out on the left side to make sure you have the correct setup.
Mia
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Kris_in_SJ
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Re: Hi I am new and I have a few Questions
« Reply #8 on: Apr 11th, 2006, 7:28pm » |
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Have to aree with Mia on this one.
I've been a moderate smoker and drinker of soda, wine, diet soda, coffee, tea, etc,. etc. all my adult life. No serious head injuries, no sinus problems. Never had a cluster cycle happen until I was 41 years old.
I'm one of the fortunate ones with virtually no triggers - except when in cycle I must avoid overwork in the garden when heat and humidity are high. I can drink, smoke and eat virtually anything I want during cyle (thank you, God)
That said, for years and years, we have been looking for common denominators. In all the research I've done, the one common denominator seems to be an unusual variation in the body's Seratonin levels - our hypothalamuses seem to be a little out of wack.
I've stopped looking for reasons now - I just seek the treatments that help me get past my cycles with the least side effects.
During and between cycles, this family helps me get by.
Hugs,
Kris
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D_Robinson
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Re: Hi I am new and I have a few Questions
« Reply #9 on: Apr 11th, 2006, 10:24pm » |
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In the past prior to zomig I have had cluster last over 10 hours mostly due to being in a panic and such. The preventative I was taking at the time really did not work that well for me. With the zomig, I fell one coming and I take a zomig and it is taken care of period end of story. The zomig really has been a blessing for me, if I ever met the person responsible for the drug I would kiss thier feet. My doctor basically told me my panic/stress extended the cluster and she did not feel it was uncommon and she had another patient at that time who had a similar issue.
I have started really looking this, is from 1991 till around 1999 I was 15 months like clockwork. I mean you could almost set your watch to it. I stopped with diet soda and it started extending, and now it is at 32 months, and I may be just dreaming, but I am kinda thinking there might be a way to walk away from this if I can figure out what the heck I am screwing up with my body and correct it. What am I doing wrong to possibly cause the issue here. Heavy caffiene and nicotence levels in my off cycle time might be a problem?
Right now I am just trying to get thru this on cycle I hate how the zomig makes me feel after it gets rid of the pain, the pain goes, but so does any energy I had, not to mention I feel, like my brain is not connected to anything remotely associated to my body anymore.
Guys, thanks for all your kinds words and your input, it has really helped.
David
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Garys_Girl
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Re: Hi I am new and I have a few Questions
« Reply #10 on: Apr 12th, 2006, 8:47am » |
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Caffeine definitely interrupts sleep cycles, and nicotine disrupts some "body clock" functions.
Nicotine hasn't shown to have any short-term effect (lik being a regular trigger for most) on cluster headaches.
Caffeine is a pretty effective abortive for many with cluster headaches - thus the Red Bull discussions.  Hubby prefers old fashioned coffee.
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Laurie
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D_Robinson
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Re: Hi I am new and I have a few Questions
« Reply #11 on: Apr 12th, 2006, 12:54pm » |
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Nicotine disrupts body clock functions? what type of functions?
And I am not saying I smoke therefore I get these headaches. I know that is not the case I have smoked since I was 14 and well did not start getting these headaches till after I was married. There is a collorlation many would never want to discuss (J/K). I do not think smoking is a trigger since smoking does not give me a headache. Now when I was in college and would go out drinking I would have to take tyenol or something like it some alochol is a trigger for me but i have not drank for many many years well before the clusters showed up. I got tired to of the headaches from beer.
Caffiene has been a real help for me tho I cannot stand red bull or coffee. I have been putting up with coffee, and have you guys to thank for the caffeine reminder since it is something I forget from years ago. Infact it got to work on time today instead of having to wait for the zomig to kick in.
David
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marlinsfan
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Re: Hi I am new and I have a few Questions
« Reply #12 on: Apr 12th, 2006, 1:58pm » |
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on Apr 12th, 2006, 12:54pm, D_Robinson wrote:Caffiene has been a real help for me tho I cannot stand red bull or coffee. I have been putting up with coffee, and have you guys to thank for the caffeine reminder since it is something I forget from years ago. Infact it got to work on time today instead of having to wait for the zomig to kick in.
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You say you like soda pop.... Mountain Dew has TONS of caffeine.
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D_Robinson
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Had a pretty good day today
« Reply #13 on: Apr 12th, 2006, 6:37pm » |
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Well I went to work today with my 5mg zomg and came back with it, so I would say it was a good day.
Dave
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Kris_in_SJ
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Re: Hi I am new and I have a few Questions
« Reply #14 on: Apr 12th, 2006, 6:51pm » |
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Dave,
You might seriously want to consider Melatonin as an integral part of your treatment during cycle. I always take 9mg/night about 30 minutes before sleep. It negates any negative influence the caffiene might have had during the day.
It also helps replenish the Seratonin levels in the body - which many medical professionals believe we clusterheads are short of.
The best part is, after a few nights, it kicks in and many of us actually can begin sleeping through the night again.
Good Luck,
Kris
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D_Robinson
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Re: Hi I am new and I have a few Questions
« Reply #15 on: Apr 13th, 2006, 10:31am » |
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Kris,
I will give the melatonin a try, but I have been doing some reading here and maybe I am mistaken, but I thought my seratonin levels were supposedly too high and that was the reason for these things or maybe I am not grasping what I am reading on the ouch website correctly
http://www.ouch-us.org/chgeneral/seratonin/serotonin2.htm
It is kinda hard to get my head all around anyway since I have not spend 12 years studying to be a doctor I am just trying to understand this a bit more and my body to maybe extend my off time a bit more.
Dave
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D_Robinson
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Re: Hi I am new and I have a few Questions
« Reply #16 on: Apr 15th, 2006, 8:59am » |
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Man 20 days in and two days of pretty decent daytimes and last night I just got hammered. I am not even sure when the medificatioin kicked in since I must have just fell asleep. Started kinda slowly where I thought OK Drink a bit of coffee and try to ward it off without a zomig and well after an hour I am thinking well that was stupid I could be out of pain now and now it really hurt, but I gotta be strong take a pill and work thru the pain till it goes away.
I have to say reading thru the posts around here has really helped me, especially about someone of them about having to deal with cluster headaches at work. I am very lucky right now with an understanding boss, who lets me take the time to allow the meds to take effect and then get back to working, but your stories have helped me be stronger mentally while the meds are getting into my system and getting to do their job. It has been a while since I have had to deal with this and well being able to read your stories has been a big help for me.
David
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Garys_Girl
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Re: Hi I am new and I have a few Questions
« Reply #17 on: Apr 16th, 2006, 3:27pm » |
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David:
Re: your question on Seratonin levels:
"Serotonin: a chemical messenger, called a neurotransmitter, involved in communicating the message to the brain to expand (dilate) or close (constrict) the blood vessels. When these blood vessels dilate and constrict, they stimulate nerves that carry pain-producing messages in the brain, leading to headache pain, particularly the pain of migraine. Serotonin is also responsible for controlling mood, attention, sleep and pain." Cleveland Clinic Glossary of Terms http://www.webmd.com/content/article/46/1826_50702.htm
"...Here's what likely happens when you get a migraine and probably a tension headache, too:
* An electrical wave sweeps over the brain.
* The electrical activity causes a surge in the serotonin level, which causes blood vessels to constrict.
* Serotonin seeps into the surrounding tissues, which lowers the level of serotonin in the brain.
* The blood vessels expand and the nerves in the brain become irritated by the lack of serotonin. "
Foundation for Better Healthcare http://www.fbhc.org/Patients/Modules/headache.cfm
Because of the regularity of many CH attacks and the regularity of many CH cycles, researchers conclude that the hypothalamus is seat of the problem that causes Cluster Headaches.
"The hypothalamus is involved in the regulation of many important chemicals and nerve pathways, including the following:
* Nerve clusters that regulate the body's biologic rhythms (its circadian rhythms).
* Serotonin and norepinephrine. These are neurotransmitters (chemical messengers in the brain) that are involved with well being and appetite.
* Cortisol (stress hormones).
* Melatonin (a hormone related to the body's response to light and dark).
* Beta-endorphins (substances that modulate pain).
....The most important nervous cluster is the suprachiasmatic nuclei (SCN), which appears to help coordinate the body's activities (sleep/wake) with the environment (dark/light). Some studies support the idea that some failure in this biologic pacemaker may impair the pain control system and cause these terrible attacks.
The hormone melatonin is also involved in the body's biologic rhythms.
Alterations in Serotonin. The brain chemical serotonin is of particular interest in the study of headaches, particularly migraine and cluster headaches. This neurotransmitter (chemical messenger) affects, among other functions, well being, sleep, and appetite. Some research has also suggested that serotonin may play an important role in the way circadian rhythms are expressed. There is some evidence of abnormal regulation of brain serotonin levels in cluster patients (although it is not as pronounced as in migraine patients)." (About.com on Cluster Headaches) http://adam.about.com/reports/000099_2.htm
So... researchers now believe that the hypothalamus is the "source" of Cluster Headaches. The hypothalamus controls, among other things, the regulation of serotonin. In addition to regulating sleep (and other things), serotonin assists in the regulation of vasoconstriction and dilation, but is basically a powerful vasoconstrictor.
A sudden release of serotonin, as described above, causes a surge in the serotonin levels; this causes blood vessels to constrict. This blood vessel constriction apparently causes the serotonin to seep into surrounding tissues; the result is that serotonin levels in the brain are lowered.
So - the answer is that too much serotonin causes too little serotonin to be in the brain.
Triptans like Imitrex are serotonin - but it's like there's a serotoninA, serotoninB, serotoninC - each of which target different serotonin receptors. So Imitrex apparently targets a specific serotonin receptor that has a high relevance to CH sufferers, thus has the ability in many cases to abort the pain associated with a cluster headache. But because they don't know which specific receptors are involved with CH, or because different receptors are affected in different people (?), it doesn't work for everyone.
Laurie
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Laurie
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MJ
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Re: Hi I am new and I have a few Questions
« Reply #18 on: Apr 17th, 2006, 2:09am » |
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Good research and review.
Well done Laurie.
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MJ
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