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constant_pain
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My story...
« on: Nov 21st, 2007, 2:44pm » |
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Hello Everyone,
After following this forum on and off for many years...I finally decided to share my story in hopes that I can get some feedback which might help find a cure for my head pain. There's a good amount to list so I hope you bare with me through this lengthy post. I'll do my best to keep things breif with bullet points to shorten the length.
Here it goes...
I first experienced headpain at the age 18 when I started college. At this time, my sleeping patterns changed greatly and I entered into the world of computers. I purchased my first computer to use for homework while I pursued a degree in computer science. Between school, homework, and just learning how to use a computer, I was using the computer for 10+ hours a day. I started going to sleep at 5/6am in the morning, going to school for an 11am class and then returning home for a hour or so nap before my 4pm class. I recall waking up from my naps with terrible head pain and running to put my head under hot water.
During the next semester I was still spending countless hours on the computer. My schedule changed a bit and I found myself getting an average of 3 hours a night of sleep. Going to bed at 3/4am and waking up at 7am. Returning from class, naping and going back for afternoon/evening classes. This is when I started to experience headaches more often. The first headache would occur during my 8am class always on the left side. It was so painful that my handwriting would change due to me fighting to pay attention in class and take notes. (sidenote: An interesting thing here was two other classmates were experiencing daily headaches as wel)
9 years later and I still get daily headaches. My sleeping patterns have become more regular however, I'm still using computers for 10 hours a day. Now from what I've described it seems as if computers may be the obvious cause. The interesting thing is I get headaches even when I'm not on the computer (even for a few days).
I've tried numerous remedies and solutions (listed below) and have yet to find the exact cause.
My symptoms have changed slightly. I noticed that my headpain isn't always on one side but sometimes in the center of my head or sinus areas. If I run I noticed clicking in head (sinus). 80% of the time the pain is on one side 20% in the middle or top of head. The side the headache is on varies. The side of pain is usually accompanied by a clogged nostril on the same side. This occurs everyday, not just for weeks/months at a time.
My diagnosis:
Dr #1 - Tension Headaches
Dr #2 - Cluster Headaches
Dr #3 - Migraines
Perscriptions, surgeries etc.:
-Dr #1 diagnosed me with Tension headaches and perscribed Verapimil. This worked for day 1 or 2 and then the headaches continued.
-Dr #2 diagnosed me with Cluster headaces. We first tried indomethecin to make sure it wasn't CPH. This changed my pattern of when my headaches occured but did not cure them. We then started on steroid treatment to stop the cycle of headaches followed by Verapimil (Generic brand at a higher dose). I was instructed to take the Verapamil daily along with Celebrex ( I do not recall the dosage amounts), and if a headache were to "break through" too take one zomig pill. While taking the steroids for about a week, I didn't receive any headaches. I've actually taken this a few times and each time it did indeed prevent headaches for the week of taking these pills.
For the most part this treatment worked. I only felt shadows coming on and if I felt a headache starting zomig would usually prevent it. The problem was that my pharmacy said the dosage was too much (twice what I "should" be taking) when I went in for a refill in half the expected time. He said I could pass out from the dosage amount, which almost happened once during driving oddly enough. Since this was not a cure and caused my blood pressure to become below normal (as per a nurse a surgery exam..also described later), I decided to stop taking the meds.
-Dr #3 diagnosed me with migraines. I refused the perscription he was going to write me because I want to find a cure not just stop the symptom.
Other Treatments:
-fever few, vitamin b2, melatonin, everyday vitamin & vitamin E
(the best results the above has given is taking different combinations of these pills which act as the placebo affect? i dont take vitamins everyday but when I take an vitamin after not doing so for a few days, it seems to affect the headaches for that day. they are less severe or don't occur. when taking vitamins everyday the headaches resume)
-sinus surgery
(this did not work and I actually had a headache right after surgery while taking Percaset)
-homeopathy
(im unsure of the natural vials i was given but they have not worked for me)
-chiropractor
(first one took an xray and cracked my joints a bit. this had no affect. im currently trying another chiropractor in which i believe is having "some" affect but once again no cure)
-tiger balm
(putting on temples when headache occurs. provides minor relief and most of the time none at all)
-hot water and steam
(this has been the best so far and is what i still use)
Some interesting affects on headaches from alcohol
Here's one I've been unable to figure out. If I have 1-3 alcoholic beveages (beer, wine,whatever) a headache can get triggered. However, if I have enough to get nicely buzzed (or more), I won't get a headache the following day.
Working out also seems to be a trigger and remedy.
After running for a few miles or having an intense workout a headache is usually triggered. If during a headache, however, I start running, doing pushups etc. it help rids the pain quicker.
Other (random) notes:
I eat very healthy (90% organic) and excercise regularly (5 days weight lifting, 2 running, somtimes rock climbing,
surfing etc.)
-Ciggarette smoke is a definite "trigger". Working out and excertion seem to be triggers and remedies for pain (I find this odd)
-I wear contacts and the eye dr said besides the fact of needing glasses my eyes are healthy.
-I've had MRI scans and xrays of my neck (from chiropractor) both of which came back with no issues.
As mentioned above I'm currently seeing a chiropractor who thinks the problem is with my neck and spine. I'm skeptical of this and haven't seen a dramatic decrease in headaches. My next thoughts were to see an alergy doctor, then acupunture.
Based on my description and info above. Anyone want to share any input on this? (recommendations of other things I could look into, natural remedies, experiences similar to mine?). I'm determined to find a cure for what I have and not just surpress the symptoms.
thanks for taking the time too read.
edited: to format better
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| « Last Edit: Nov 21st, 2007, 2:50pm by constant_pain » |
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Melissa
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Re: My story...
« Reply #1 on: Nov 21st, 2007, 2:58pm » |
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Hello there,
First of all, I think due to the verap, zomig + steriods helping you, that you probably do have clusters. Did you take the cluster quiz to the left and what were your results?
Secondly, there is no cure for clusters, only individual effective treatments that are usually somewhat different from sufferer to sufferer.
Thirdly, you say you've followed this forum on and off for many years, if so, have you tried Oxygen? Usually that is the cheapest and most effective treatment for attacks.
Last, how long does each attack for you last and how many times a day do you get "hit"?
Just trying to gather some info. to help you, that's all.
Thanks.
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constant_pain
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Re: My story...
« Reply #2 on: Nov 21st, 2007, 3:33pm » |
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hi there,
thank you for your reply.
i did take the cluster quiz and i answered "yes" to 3 of the questions which people don't "normally" have clusters and "yes" to 5 of the ones (#9-#16) which people usually do have clusters.
i have read that there is no known cure. I'm a firm believer in natural remedies and believe there is something, or at least a natural remedy that will provide pain relief.
i have no tried oxygen yet. although cheaper than most meds, this can be quite pricey too, correct?
my attacks are an average of about 20-30min. i get an average of 2-3 a day. there are some days where i only get my morning one (most consistant). and other days where i get them almost every two hours. for example last night i had 3 of them from 9pm till 2:40am. change of seasons seems to affect the frequency of them.
ryan
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Brew
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Re: My story...
« Reply #3 on: Nov 21st, 2007, 3:39pm » |
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Perhaps you might want to change your thinking a bit. If you're looking for a cure, all the people that have been on this site since its inception have yet to find one. And that's a lot of manhours. However, if you're looking for treatment and support, well, you've come to the right place.
There is no cure to this. If you want to manage your pain and receive support from fellow clusterheads, stick around and read.
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constant_pain
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Re: My story...
« Reply #4 on: Nov 21st, 2007, 4:20pm » |
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brewcrew,
i understand your point. the purpose of my post was to try and get feedback from my description above.
i guess maybe i felt somone might pop up and say "hey i had the same thing. i thought it cluster headaches but in reality it was.....and ...... helped me"
or
"those symptoms are very similar to mine...what i do to minimize the pain is....."
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Linda_Howell
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Re: My story...
« Reply #5 on: Nov 21st, 2007, 6:14pm » |
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Quote:
i guess maybe i felt somone might pop up and say "hey i had the same thing. i thought it cluster headaches but in reality it was.....and ...... helped me"
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Everyone here...either has cluster headaches or is a supporter to someone who cluster headaches. There-fore just by this criteria you won't find anyone here who says I thought it was CH and in reality it was something else and this is what helped me.
As far as I know...there is no cure for Migraines either. Only ways to cut down on the pain and cope with it. Just like CH.
I, too recommend trying oxygen. It's cheap, safe, has no side-effects and it works as an abortive in about 70% of us. You will need a script from your Dr. for it. Make sure he writes it for at least 15 lpm and with a non-rebreather mask.
Linda
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Melissa
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Re: My story...
« Reply #6 on: Nov 21st, 2007, 6:36pm » |
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Ryan,
In addition to what Linda said, I also urge you to read as much as possible on the meds section of the board where there is mention of alternative therapies for clusters.
As for O2 being more expensive than most meds? I've found that to be false for myself as O2 costs much less than imitrex. Check with your doctor and insurance company.
Sorry for your pain, glad you found this site (it's a lifesaver) and please read as much as possible because therein will you find your answers.
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Linda_Howell
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Re: My story...
« Reply #7 on: Nov 21st, 2007, 6:52pm » |
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I missed this in your previous post:
Quote:i have no tried oxygen yet. although cheaper than most meds, this can be quite pricey too, correct?
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Heavens no. After you get a script from your Dr. You take it to any number of medical supply places in your area. Lincare or Apria are nationwide. I made a deal with the manager to leave the Ins. Co. out of the equation since they were charging me more that way..and I now have a 10.00 per e-tank agreement with Apria. One tank is good for about 3 to 4 HA's...and I will gladly supply you with a proper regulator as well as a non-rebrefather mask.
Imitrex costs several hundred and most can only get 6 per month of the nasel sprays and 2 to 4 of the injections per month. That does you no good when you're getting hit several times per day all month long.
Please consider the 02 and let me know if I can help you with the regulator and mask.
Linda
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Annette
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Re: My story...
« Reply #8 on: Nov 21st, 2007, 7:38pm » |
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Hello Ryan
I am not so sure that what you have is really clusterheadache. Some of the symptoms sound a bit different, like the pain changing from one side of the head to the centre and top of head. CH pain is caused by the trigeminal nerve so its to one side, and boring behind the eye, it is very intense and sharp and it feels like a hot metal rod poking through the eyeball trying to push it out. It can flip to the other side but it doesnt usually float around the head like that.
When you have the headache can you sit still or lay down? Can you go to sleep with one on? Would lying down in a dark quiet room help? Do you usually get nausea with it? Does it come and go suddenly and completely? Do they come around the same time each day? Have you had ANY break ( painfree day ) at all for the last 9 years? Does the pupil on the affected side dilate or constrict when you have the pain?
Have you seen a neurologist? Especially one who is experienced in treating headaches in general and clusterheadaches in particular. You have seen 3 doctors and got 3 different diagnosis so I am not so sure what it is that you have.
There is a condition called chronic daily headache which has symptoms similar to what you have described too.
Reading your post I have to wonder whether you have managed to mess up your own bodyclock ie the hypothalamus by your horrible sleeping pattern through all the years and therefore give yourself this kind of headache. Irregular sleep and not enough sleep does contribute to making CH worse. In fact it will make any type of headache worse.
You said that your sleeping pattern is now more regular. What do you mean by that? Are you still going to sleep at irregular hours and are you still not getting a good sound sleep every night? Do you ever get woken up with a headache while sleeping ?
I dont think it was using the computer that is the cause but still using it for 10 hrs + per day, every day is not at all healthy. Do you have to really spend that much time on a computer? Do you have regular break in between? You said you get headache even when you dont use the computer for a few days but you need to bear in mind that after using it 10+ hrs per day for 9 years a few days break wont make much difference.
If you want to try something natural you might like to try putting ice on your face and neck and chuck down an energy drink at the onset of a headache and see if that will help. Oxygen is worth a try and its definitely natural but it takes time to organise and set up and it has to be prescribed by a doctor.
It seems like you have and will be spending a lot of time and money on finding "the cure" while the diagnosis is not that clearcut. If I am you, I would spend time keeping a very detailed diary of the headaches and would be looking for a really good headache specialist who has had a lot of experience with clusterheadache. I would pay him/her good money to get myself a definite diagnosis before investing more into remedies and treatments.
Just my 2 cents.
Wishing you painfree days and nights.
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Charlie
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Re: My story...
« Reply #9 on: Nov 21st, 2007, 11:40pm » |
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Welcome to the mad house but I'm sorry to meet you because of this horror.
It sounds like clusters to me.....mostly. Clusters are a vascular headache as much as anything. Strenuous exercise during a hit has an effect on circulation. Your muscles need it and it can draw just enough away from the area to help kill the monster. There are several stories about it. One man said it helped him to stand barefoot on his garage floor.....blood again.
Anyway here is what worked so well for me and the price is right:
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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constant_pain
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Re: My story...
« Reply #10 on: Nov 26th, 2007, 5:30pm » |
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Annette,
I do get the pain behind the eye, but its not every time. That's why I mentioned that I'm not 100% sure I have cluster headaches.
In answers to you questions:
When you have the headache can you sit still or lay down?
>It depends. Sometimes I can try to calm myself down and try to be motionless in order to allow my body to relax and have my blood vessels not constrict further. I try to slow my breathing down so my body is less tense and the pain lessons. Sometimes it doesn't work and I become figgidy and need to move around etc.
Can you go to sleep with one on?
>No I cannot fall asleep during a headache.
Would lying down in a dark quiet room help?
>similar to above,sometimes this helps and sometimes it doesn't. More along the lines of relaxation but it's a toss up.
Do you usually get nausea with it?
>Mostly no. Have I ever felt a little nausaus? yes. But 99% of the time no. Same with light sensitivity.
Does it come and go suddenly and completely?
>Yes I can go from pain free to crazy pain in 5minutes. Then 20-30minutes back to pain free.
Do they come around the same time each day?
>Yes but the schedule does fluctuate. The most consistant has been my morning headache which doesn't vary much (maybe within an hour and has been this way for many years.
Have you had ANY break ( painfree day ) at all for the last 9 years?
>Yes but they are extremely rare. Other times I'm pain free is the following day after a night of partying (alcohol consumption).
Does the pupil on the affected side dilate or constrict when you have the pain?
>This I will have to double check. I know my eye becomes red and squints a little. I'll find out what happens to the pupil and post back.
"You said that your sleeping pattern is now more regular. What do you mean by that? Are you still going to sleep at irregular hours and are you still not getting a good sound sleep every night? Do you ever get woken up with a headache while sleeping"
Basically I mean I do not have the naps and the constant changing sleep patterns that I had in college. There are fluctuations but for the most part its up by 8am sleep by 12/12:30. I do get woken up by headaches at night. This seems to happen in clusters actually, but it's not every night.
As far as using ice, hot seems to be a better remedy.
hope this answers all your questions ;]
--
Charlie,
Interesting post. This almost reminds me of when I try to "think" the pain away. This goes somewhat hand in hand with what I was explaining above about trying to calm myself down and stay still (which doesn't always work). I didn't want to sound nuts, but sometimes I can think it away or channel the pain to different parts of my head (or at least it seems that way).
I would like to try what you mentioned...thanks for the info ;]
ryan
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Linda_Howell
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Re: My story...
« Reply #11 on: Nov 26th, 2007, 8:16pm » |
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Quote:| Sometimes I can try to calm myself down and try to be motionless in order to allow my body to relax and have my blood vessels not constrict further. |
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Actually Ryan, Constricting the blood vessels is exactly what you want to do in a cluster headache. During a CH the vessels swell up to 20 times their normal size, causing the pain. The meds we take, Imitrex, caffeine, 02 help to contrict those vessels back down to normal size.
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purpleydog
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Re: My story...
« Reply #12 on: Nov 27th, 2007, 1:40am » |
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Constant pain,
Have you seen a neurologist, mainly one who specializes in headaches? If not, then get an appointment with one ASAP, and get a diagnosis. You need to see someone who specializes in headaches, specifically clusterheadaches. There are headaches similar to CH that are treated in similar ways, and others that are treated differently.
Preventative meds for CH take time to build up in your system in order for them to work. And Zomig pills will act too slow, you should be on an injectable triptan, such as imitrex. It also comes in a nasal spray, and these act within 10 min or less for most people. Oxygen is the number 1 abortive, so try it. If your doc won't give you a script for it, then you can get welders oxygen, you must buy the tank, and get it refilled, but it is the same O2 as medical oxygen. You will need a regulator that goes up to 15 to 25 liters per minute (lpm), and as Linda said, get a non- rebreather mask to use with it.
I have never heard of having an irregular sleep pattern "messing up your body clock", especially when it was so long ago. I am chronic, and have gone through sleep patterns when I only sleep for 3 hours a night. I wake up refreshed, and feel pretty good. When I sleep longer, I get hit, and feel like crap when I wake up. Of course, when I'm having a "cycle", the exhaustion gets to me like everyone else, and melatonin can help you sleep. It's in the supplement section of the store. It helps many people sleep through the night, and not get hit then, so they get some rest.
They hypothalamus controls your body clock, and all of us with CH have a screwed up hypothamus. This is why a lot of people get hit after they fall asleep. Looking at a computer monitor can be a trigger, but I didn't see where you said you got hit after looking at the monitor. A lot of us use computers daily for hours and hours, then more when we are home from work. Some of us live here. 
Of the treatments you have listed, the heat and steam are good if they help you. Chiropractic doesn't work, narcotics don't work, although there are a few here who use them, as their CH is so bad, it takes the edge off the pain, but they won't kill a headache, and some will trigger one. Energy drinks, like Red Bull for example, will usually abort a CH if you slam one down right away, or very strong coffee. Caffeine is a vasoconstrictor, and will reduce the swelling of the blood vessels in your brain. Be careful of home remedies, they will take your money, and not help you.
I will suggest reading the med board, and the cluster specific board, there are good threads concerning treatments you may want to read. Also, all the tabs over to the left will give you great information, and the OUCH website also has excellent info. Start a headache diary, and write down the times of your hit, what you were doing, anything you took, if at all, and take it to the neuro with you.
It is a good idea to print off the O2 info, as not many docs are used to prescribing a high flow rate. Feel free to call the doc, and ask if he/ she specializes in CH before you go in, so you don't waste your time and money. But do get to a neuro as soon as you can, so you can get a real diagnosis. We are not docs here, but we have a lot of experience with CH, and can tell you what works for us. Be sure to talk to your doc about any meds you get, and don't change them without consulting the doc first.
CH has no cure, we can only treat the symptoms unfortunately, but you can live your life in spite of it. You have come to the right place, and please ask any and all questions, we want to help.
And welcome to the nut house!!
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constant_pain
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Re: My story...
« Reply #13 on: Nov 27th, 2007, 10:03am » |
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on Nov 26th, 2007, 8:16pm, Linda_Howell wrote:
Actually Ryan, Constricting the blood vessels is exactly what you want to do in a cluster headache. During a CH the vessels swell up to 20 times their normal size, causing the pain. The meds we take, Imitrex, caffeine, 02 help to contrict those vessels back down to normal size.
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is that why i feel relief (for a few seconds) if i ram my finger on the side of my temple? almost ceasing off the blood flow?
i was under the impression that the blood vessels constrict. i guess having them swell up makes sense becuase i can see the vein on the left side of my head bulging out during headaches. i can even trace it to my ear practically.
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George_J
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Re: My story...
« Reply #14 on: Nov 27th, 2007, 10:12am » |
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on Nov 27th, 2007, 10:03am, constant_pain wrote:
is that why i feel relief (for a few seconds) if i ram my finger on the side of my temple? almost ceasing off the blood flow?
i was under the impression that the blood vessels constrict. i guess having them swell up makes sense becuase i can see the vein on the left side of my head bulging out during headaches. i can even trace it to my ear practically.
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Yep.
That's why cold or oxygen will provide partial or complete relief of a CH. Both stimulate a physical reaction in the blood vessels that causes them to constrict.
Vasoconstrictor=good
Vasodilator=bad
Best,
George
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Ah! The foreigners put on such airs
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It all comes to light in the sheer
Debonair.
(Ellen)
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Brew
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Re: My story...
« Reply #15 on: Nov 27th, 2007, 10:30am » |
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on Nov 27th, 2007, 10:03am, constant_pain wrote:| is that why i feel relief (for a few seconds) if i ram my finger on the side of my temple? almost ceasing off the blood flow? i was under the impression that the blood vessels constrict. i guess having them swell up makes sense becuase i can see the vein on the left side of my head bulging out during headaches. |
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The artery that causes CH pain is MUCH deeper than that. I don't know about peripheral vessels dialating during a CH attack. Perhaps others can weigh in on that.
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Brew
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Re: My story...
« Reply #16 on: Nov 27th, 2007, 10:34am » |
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on Nov 27th, 2007, 10:12am, George_J wrote:
Vasoconstrictor=good - triptans, oxygen, cold
Vasodilator=bad - Viagra, alcohol, nitro glycerin
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Just to name a few.
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constant_pain
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Re: My story...
« Reply #17 on: Nov 27th, 2007, 11:33am » |
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on Nov 27th, 2007, 1:40am, purpleydog wrote:Constant pain,
Have you seen a neurologist, mainly one who specializes in headaches? If not, then get an appointment with one ASAP, and get a diagnosis. You need to see someone who specializes in headaches, specifically clusterheadaches. There are headaches similar to CH that are treated in similar ways, and others that are treated differently.
Preventative meds for CH take time to build up in your system in order for them to work. And Zomig pills will act too slow, you should be on an injectable triptan, such as imitrex. It also comes in a nasal spray, and these act within 10 min or less for most people. Oxygen is the number 1 abortive, so try it. If your doc won't give you a script for it, then you can get welders oxygen, you must buy the tank, and get it refilled, but it is the same O2 as medical oxygen. You will need a regulator that goes up to 15 to 25 liters per minute (lpm), and as Linda said, get a non- rebreather mask to use with it.
I have never heard of having an irregular sleep pattern "messing up your body clock", especially when it was so long ago. I am chronic, and have gone through sleep patterns when I only sleep for 3 hours a night. I wake up refreshed, and feel pretty good. When I sleep longer, I get hit, and feel like crap when I wake up. Of course, when I'm having a "cycle", the exhaustion gets to me like everyone else, and melatonin can help you sleep. It's in the supplement section of the store. It helps many people sleep through the night, and not get hit then, so they get some rest.
They hypothalamus controls your body clock, and all of us with CH have a screwed up hypothamus. This is why a lot of people get hit after they fall asleep. Looking at a computer monitor can be a trigger, but I didn't see where you said you got hit after looking at the monitor. A lot of us use computers daily for hours and hours, then more when we are home from work. Some of us live here.
Of the treatments you have listed, the heat and steam are good if they help you. Chiropractic doesn't work, narcotics don't work, although there are a few here who use them, as their CH is so bad, it takes the edge off the pain, but they won't kill a headache, and some will trigger one. Energy drinks, like Red Bull for example, will usually abort a CH if you slam one down right away, or very strong coffee. Caffeine is a vasoconstrictor, and will reduce the swelling of the blood vessels in your brain. Be careful of home remedies, they will take your money, and not help you.
I will suggest reading the med board, and the cluster specific board, there are good threads concerning treatments you may want to read. Also, all the tabs over to the left will give you great information, and the OUCH website also has excellent info. Start a headache diary, and write down the times of your hit, what you were doing, anything you took, if at all, and take it to the neuro with you.
It is a good idea to print off the O2 info, as not many docs are used to prescribing a high flow rate. Feel free to call the doc, and ask if he/ she specializes in CH before you go in, so you don't waste your time and money. But do get to a neuro as soon as you can, so you can get a real diagnosis. We are not docs here, but we have a lot of experience with CH, and can tell you what works for us. Be sure to talk to your doc about any meds you get, and don't change them without consulting the doc first.
CH has no cure, we can only treat the symptoms unfortunately, but you can live your life in spite of it. You have come to the right place, and please ask any and all questions, we want to help.
And welcome to the nut house!! |
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yes i have seen a neurologist and had mri scans done. they came up normal.
the 2nd dr i saw (who specialized in CH is the one who tried several methods: steroids, verapamil, indocen etc.)
i will look into using oxygen it seems it might be best bet for now. as far as taking meds, i'm against that and drug companies for that matter. i won't get into that discussion here but i'm not for companies who want to get people hooked on drugs instead of finding a cure (i'm sure this is highly debatable so i'll leave it at that).
as far as irregular sleeping patterns messing up the system clock. i guess i forgot where i read that..perhaps i read that it was a trigger and you should try to keep regular sleeping patterns.
i tried melatonin to help prevent headaches. it didn't have much of an affect except make me majorly drowsy the next day (that and crazy dreams ;])
ryan
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constant_pain
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Re: My story...
« Reply #18 on: Nov 27th, 2007, 11:40am » |
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on Nov 27th, 2007, 10:34am, brewcrew wrote:
interesting how alcohol is bad. yes it's a trigger but it also seems to help (the following day). anyone have the same experience or any input as to why?
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Linda_Howell
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Re: My story...
« Reply #19 on: Nov 27th, 2007, 11:47am » |
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Quote:| as far as taking meds, i'm against that and drug companies for that matter. i won't get into that discussion here but i'm not for companies who want to get people hooked on drugs instead of finding a cure |
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No one likes taking medications, but if you're still looking for a cure..you're going to be "in constant pain" for a while. Medications can be a life saver...ask any diabetic for instance.
I too, recommend the oxygen.
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Brew
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Re: My story...
« Reply #20 on: Nov 27th, 2007, 11:50am » |
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on Nov 27th, 2007, 11:40am, constant_pain wrote:| interesting how alcohol is bad. yes it's a trigger but it also seems to help (the following day). |
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You're the first one I've heard of for whom it helps, next day or not. You see, there is no next day when I'm in cycle. That's why I've basically quit drinking - I'm too afraid of the pain it might cause.
I don't really miss it too much.
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Brew
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Re: My story...
« Reply #21 on: Nov 27th, 2007, 11:53am » |
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on Nov 27th, 2007, 11:33am, constant_pain wrote:| as far as taking meds, i'm against that and drug companies for that matter. i won't get into that discussion here but i'm not for companies who want to get people hooked on drugs instead of finding a cure (i'm sure this is highly debatable so i'll leave it at that). |
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Then you are throwing yourself on the altar of anti-corporatism and allowing yourself to be slaughtered with your pain.
There are drugs that will help you - they are not addictive.
View the world as you will.
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Linda_Howell
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Re: My story...
« Reply #22 on: Nov 27th, 2007, 11:59am » |
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Quote:
Then you are throwing yourself on the altar of anti-corporatism and allowing yourself to be slaughtered with your pain.
There are drugs that will help you - they are not addictive.
View the world as you will. |
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Hmm. Bill I was saying the same exact thing to that sentiment of his, but you said it SO much better than I.
I hate it when that happens. lol
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Karla
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Re: My story...
« Reply #23 on: Nov 27th, 2007, 12:08pm » |
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Hi welcome to ch.com! I was a computer programmer/systems analyst for 15 years. I understand completly spending all day and night on the computer. It is terrible what the employer expects of us. My dr thought that the computer might be the culprit in my case to. Well, for a different medical reason I went on disability and have been out of the computer field for 7 years now. So I spend a lot less time on the computer and guess what?! I still get these nasty cluster headaches. It didn't effect it at all.
I would recomend from personal experience that you try imitrex nasal spray which can be effective in 6-10 min. or imitrix injections. They are both fast acting and wonderful meds to help keep the sanity.
I also get extream pain on the front and top of my head as well as in the eye itself.
Good luck in finding something that works for you.
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Karla
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constant_pain
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Re: My story...
« Reply #24 on: Nov 27th, 2007, 12:23pm » |
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i figured that would open up a can of worms. truth is i'm very much against drug companies and feel maybe they could be linked to the cause of my pain in the first place (who knows).
yes this means daily pain and as odd as that may seem, i still refuse to go against my beliefs.
moving along, i still search for natural remedies in hopes i can find one that works. even if it isn't a cure, i'm more comfortable with taking natural stuff than meds.
as mentioned above, i really like the idea of oxygen and plan to explore this treatment.
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