Cluster Headaches
I can appreciate the difficulties and pain associated with Cluster Headaches. My most recent cluster started April 3rd. and since then I have only had one day without a headache.
When I see a pattern developing, I start on Inderal LA and Elavil. I increase my dosage over a period of days until I reach a point when the episodes level off in frequency, intensity and duration. I usually have more a break by now which means I have probably developed further tolerance to the meds. I may need to see a neurologist and discuss an alternative approach.
One of the things I need to be careful about is diet. When I am having clusters - which seems to be around seasonal changes - I need to be careful about my diet. Aged cheeses, fresh bread, processed meats, caffeine, red wine, etc. These foods contain tyramine and are known to act as triggers in people who are susceptible to cluster headaches.
These headaches are debilitating and more distressing than common or classic migraine headaches. Have you ever felt like you had to sneeze? You know that intense feeling that can build inside the nose? It feels like you have to sneeze really badly but the sneeze doesn't actually occur. Consider that sensation and multiply it extremely to the point of agonizing pain in the affected nostril. You might feel a cool stabbing pain around the eye socket. Tearing may be noticed along with blurring, drooping of the eyelid, and twitching on the affected side.
Cluster headaches are often mistaken for sinus infections or severe sinus headaches because of the closeness in symptom characteristics. The pressure in the area of the eye, scalp, face, and temple can be extremely painful and persistent. I find it even hurts to talk and breathe sometimes. Light sensitivity can be significant and some folks feel nauseated to the point of vomiting during the most severe ones.
The really severe ones make you think you are going to die and quite frankly not caring if you do. They are that painful! If a person has never experienced headaches, they have no clue what one of these are like and how debilitating they can be.
When I have clusters, it takes a lot out of me. I need more rest. I need to cut back on stressful events. I need to step back and remove some of the demands and pressures that keep me running on adrenaline.
It is not always easy but I find that even a little bit of change on my part can make or break the cluster cycle. A couple of years ago I had a severe cluster that lasted 3 months. I had headaches predictably during that time and once I got my meds up to therapeutic blood levels, things calmed right down.
I stay on my meds until I am without symptoms for 7-10 days. Then I slowly cut back on my meds until I am off of them. And when I am fortunate, I will go months or years without any significant problems and no need for meds.
I hope you are having a pain free day!
Related Topics: Preventing Severe Migraines, Herbs, Stress Reduction and Other Alternatives
Technorati Tags: migraine, cluster headache, pain management
When I see a pattern developing, I start on Inderal LA and Elavil. I increase my dosage over a period of days until I reach a point when the episodes level off in frequency, intensity and duration. I usually have more a break by now which means I have probably developed further tolerance to the meds. I may need to see a neurologist and discuss an alternative approach.
One of the things I need to be careful about is diet. When I am having clusters - which seems to be around seasonal changes - I need to be careful about my diet. Aged cheeses, fresh bread, processed meats, caffeine, red wine, etc. These foods contain tyramine and are known to act as triggers in people who are susceptible to cluster headaches.
These headaches are debilitating and more distressing than common or classic migraine headaches. Have you ever felt like you had to sneeze? You know that intense feeling that can build inside the nose? It feels like you have to sneeze really badly but the sneeze doesn't actually occur. Consider that sensation and multiply it extremely to the point of agonizing pain in the affected nostril. You might feel a cool stabbing pain around the eye socket. Tearing may be noticed along with blurring, drooping of the eyelid, and twitching on the affected side.
Cluster headaches are often mistaken for sinus infections or severe sinus headaches because of the closeness in symptom characteristics. The pressure in the area of the eye, scalp, face, and temple can be extremely painful and persistent. I find it even hurts to talk and breathe sometimes. Light sensitivity can be significant and some folks feel nauseated to the point of vomiting during the most severe ones.
The really severe ones make you think you are going to die and quite frankly not caring if you do. They are that painful! If a person has never experienced headaches, they have no clue what one of these are like and how debilitating they can be.
When I have clusters, it takes a lot out of me. I need more rest. I need to cut back on stressful events. I need to step back and remove some of the demands and pressures that keep me running on adrenaline.
It is not always easy but I find that even a little bit of change on my part can make or break the cluster cycle. A couple of years ago I had a severe cluster that lasted 3 months. I had headaches predictably during that time and once I got my meds up to therapeutic blood levels, things calmed right down.
I stay on my meds until I am without symptoms for 7-10 days. Then I slowly cut back on my meds until I am off of them. And when I am fortunate, I will go months or years without any significant problems and no need for meds.
I hope you are having a pain free day!
Related Topics: Preventing Severe Migraines, Herbs, Stress Reduction and Other Alternatives
Technorati Tags: migraine, cluster headache, pain management
32 Comments:
My most recent cluster started back in October of 2000, and since then, I have had multiple attacks daily. There's definately a pattern....lol
I stay in contact with several neurologists on almost a daily basis. I try to keep a picc line in so I can get the meds I'll need to make it another day. The side effects from the meds are killin' me too.
I just try to be thankful for each and every pain free minute. I do what I have to do to stay as pain free as possible.
Wish me luck !!!
<--Chronic-->
You didn't mention your abortives, or do you just ride out the attacks until your preventatives kick in? The most common are Imitrex injections and 15 l/m 100% oxygen with a non-rebreather mask.
Your list of food triggers are normally for Migraines. I do avoid most of these to prevent migraines, abstaining does nothing for my clusters.
Most sufferers find that drinking extra caffeine while in cycle and increasing stress levels (not hard to do when you live on little sleep) helps to prevent some of their cluster attacks.
Sorry the above post was by me.
grrr, feel like a fool now.
Seems more like a migraine to me than the cluster you speak of. I suffer from clusters, and most other clusterheads I know don't have light sensitivity or nausea and vomiting. The latter are more in line with migraines. The pain for me is more like a red hot poker is stabbed into my eye and tries to bore my eye out. Four times a day 1-2 hours at a time. I wish you PFDANS...for support, go to clusterheadaches.com!
i have not been diagnosed ,but myself thought i had sinus problems,,i have all sysmptoms of clusters except for the drooping eyelid mine twitches and feels heavy. any suggestions
lost
I have been diagnosed with chronic migraines, but I think I also have cluster headaches. My pain is so bad at times that I cannot lay still in dark room I have to be moving or banging my head for it feels better than the pain. . I have no control over this pain , its like someone is twisting my eye out. My body twitches, starts in my throat , lips , face and then radiates around my body.I get very sick and vomit all the time with the pain . I rather die then to live with this kind of pain the rest of my life. I was on topamax which did help but had way too many weird side effect and had to go off , right now I just started varapamil and predisone. Its been only 4 days since my last attack. If anyone has any other suggestions, please help .
I have clusters and I use a combination of Verapamil and Caffergot. Usually works for me. if a cluster does slip through and I am home I get on an E size oxygen tank at 7liters and sit for 15mins. usually aborts the cluster. If I'm out and it hits I use Imitrex injections.
Sad thing is my 9 year old daughter is showing signs of clusters! She just had a CT Scan to rule out her sinus'!
Good luck!
does anyone know if oxygen tanks expire? My husband has suffered with cluster headaches for many years, they have returned, but was wondering because we have a tank in the closet that is about two years old? Is it still good?
possibly four years old?
I have been getting these headaches on the right side of my head and involves pain in the rt.eye, side of head, and back of neck-I'm assuming they are cluster headaches...The pain gets very severe, worse than a tension headache..they wake me up and and the pain is so severe, I can't sleep..I've tried OTC Sinus Meds. plus Soma which I take for herniated discs in my back..when I'm not getting these headaches, my right side of my head feels very itchy? especially around the top of my head, is this part of cluster headaches? Relief doesn't come fast enough. I need some feedback from people with similar pain..as this just has been going on for the past 2 months...But is so unpredictable..is there any good prescriptions that really help? seems like there are quite a few? is this a life long thing?
I have been having these headaches now for about 5 years, and it always starts after I physically over-excert myself...mowing the lawn, working out, etc...and they only occur once a month or so. If I manage not to over-excert I don't have the problem...unfortunately I have a bad habit of pushing myself.
They usually start as pressure in my neck and head, then my back starts to spasm, and about an hour later..WHAM! the hot poker in the eye (always the same one). After that the nausea and vomiting starts, and I'm down for about 12 hours.
My doctor keeps telling me sounds like it could be a migraine...maybe not...we keep trying different migraine meds (Imitrex, Relpax, Maxalt, etc.) with limited success.
Just stumbled on this site, and it sure sounds like it fits my symptoms. I'll talk to my doctor today.
I had suffered w/Cluster H/A's for nearly 27 years. The first 15 years were spent in ER's being handed 'drixoral' and told it was a sinus h/a. Finally, a GP referred me to a neurologist who said I had "classic" cluster h/a symptoms - it was a clinical diagnosis. I started w/oxygen and lots of pain meds. After another 4 years, I was started on Inderal LA. These things lasted 6 - 8 weeks at first, then spread to 3 - 5 months at a time w/2 - 3 h/a per day. The oxygen worked well for the first 2 or 3 h/a's then the only 'fix' was Imitrex or to the ER for Demeral and Phenergen/ The last cluster I had was 2005 and it was a doosey! I had started passing out w/each h/a, and was having heart issues w/Imitrex. I got 6 pills of Dilaudid, which just makes you so you don't care that your head is going to explode. All the time, I was told 'it's not hormonal'. In 2005 I had a hysterctomy and guess what! No more h/a's! Now they say, "could be hormonal". I don't really care - I have been h/a-free for 2 years! And am now weening off Inderal LA. Good luck to the rest of you! anonymous
Everything that everyone said hits home. I too sufer from cronic cluster headaches. Imitrex at the very onset however, my physician prescribes me the pills. 100mg. I cut them in half and it does the trick most of the time. One suggestion that I have to my fellow suffer's is a big bag of crushed ice over the eye and on the side where the pain is coming from. This seems to numb the nerves quite a bit. My husband puts an ice chest on my side of the bed since the onset of one in the middle of the night in inevitable. I tried the oxygen with no luck besides the sound that the oxygen tank makes with every inhale made my head throb even worse.
I had very severe cluster headaches since I was about 20. I am noiw 36 and I have not had a headache in 5 years!!! I was living in Germany for a few years and I went to a german neurologist. She put me on Zoloft. I told her I was not depressed,(atleast no more than anyone else with headaches). She looked at me funny and told me that the german health system uses Zoloft for cronic pain, not depression. I took it, not thinking it would work, but I have not had a headache since. It may work for someone else too.
My recent attack woke me up in the middle of the night....Nothing helped (Imitrex and soma). Made the trip to the ER, and the Doc put me on a Saline IV with Benadryl. It started to work almost immediately!! He finished it with a shot of toradol. Anyway, I've been taking 2 benadryl w/ water and a soma before bed and haven't had any SEVERE headaches since.
I have some form of migraines, but lately my right eye has begun to flutter or twitch. I don't know what it is, i'm topamax 50 mg a.m. and p.m. scheduled to see my neuro on Tuesday 4th. any ideas
I had 3 craniotomy brain opperations and I used to get headaches all the time. My mom got migraines and I had the same symptoms so I self diagnosed myself with Migraines. The surgery took my headaches away. I have not had a bad headache in 4 years since my last surgery. I would never urge anyone to go through the pain and missery of 36 days in the hospital but I had a germ that ate through my brain cavity (the same germ that causes Strep throat).
Recently I have been having an eye twitch with my left eye... just in the last couple days. I don't know what it is from because I have not had any head pains at all. Anyone suggest anything?
i recently started having another cycle of clusters last month. i have been suffering from these horrible headaches since i was 20. i have always wondered if something happened to make them start. i was in a really bad car accident and hit my head, with a concussion. has anyone else started having these headaches after a head trauma?? i just got married and my husband and i are discussing the possibility of children. any advice out there?
I don't know what this is. I get severe pain on the left side of my head. If I barely touch my upper lip, it becomes a shooting super severe pain. If I have no pain and then touch my lip, I get severe pain again. Has anyone ever heard of this?
I get a fluttering sensation on the top of my head, the opposite side of my headaches. Soes anyone else get that?
can trauma cause cluster headaches? If so what type meds work. I have tried anti-deps, migraine meds, blood pressure meds, steriods, and beta-blockers. The only thing that gives me some relief is pain meds. I am on workmans comp and they just try to tell me I am a drug seeker. I feel like someone is stabbing me in my left temple (which is were I hit my head) I also have muscle twitching around my left eye, and I feel extreme pressure around my left temple area. I really need help!!!
oxygen tanks don't expire but must be serviced and checked out when refilled. I work ems and deal with 02 tanks every day.
Reading everyone's comments has blown me away. I'm sorry to say but knowing I'm not alone in my day in, day out suffering is minimally comforting. I've suffered from what has been diagnosed as "tension" HA's since before I hit puberty (24 yrs now). My mom has always said its hormones and I'm starting to believe that more and more everyday. I have symptoms of all 3 categories- migraines, tension, and cluster. I'm not really sure which one they are but they're chronic, debilitating, and depressing! Little to no relief with Topamax. Fioricet w/codiene and soma provide relief more often than not but its those "not" days that are driving me crazy!
WE ARE FAMILY, CAUSE NO ONE ELSE COULD POSSIBLY UNDERSTAND IF THEY DONT KNOW! In other words; "If one of us whose suffers from this chronic pain had a million dollars to end it...All we would do is ask for a pen!" ADVICE HERE: If you haven't tried the 10mg dissolving MAXalt tabs...do it! But you have to have one close to you all the time because the onset window for them to be taken and be effective is very small..."as small as one minute is all the time needed sometimes to be a FULL blown Cluster!" (2) Ice Ice Ice...Invest in a good ice pack that feels good on your skin with direct contact; use no towel...I call it "Freezing out the nerves!" My ideology to it is that "I play tricks on the nerves!" Yes the direct cold pack is painful to a degree...but you and I both know you're going through much worst than the ice factor right now!" Keep the ice pack moving from your neck to your eyeballs. Literally "freeze your head!" Also...By TWO ice packs...cause your going to want another cold one once the first one loses its cool...trust me..."It's worth the extra money...Isn't it?!" Last but not least; Don’t laugh...Most Cluster headaches are not noise sensitive...try screaming your head off...Get in your car (If your can drive, cause I cant sometimes) and let at it...it somehow lets out pressure! We Cluster sufferers do odd things for a second’s relief!
Good Luck Ya'll,
One Love
hi my name is john i have had cluster headaches for the past 25years i know what you are all going thought i have just had the attacks it has lasted for 12 weeks and hopefully it will not come back you know it is. i suffer every 2 years i am glad that i know there are other people out there who knows what i am going thought there is light at the end of the tunnel you know that its going to go but when lol
I get burning inside headaches as if inflamed and last two weeks to six or more weeks at a time. Once I had work done on the muscles thinking it may be Myofascial pain (Trigger point therapy) neck and upper back after weeks of that it let go or it would have done so anyways.Recently I had tests results showing Lyme Disease and probably have had it for 13 years and headache is part of the symptoms and apparently antibiotics will make all the other weid symptoms disappear also.
I just started getting these headaches that feel like someone stabbing me, I will wince and the pain goes - it can be very frequent or every few minutes - it's on the right side of my head, but not in my eye, it started there and now is more in the back of my head on the right side - does this sound like a cluster? Those sound like they are constant.....this is not - it's constantly unconstant!
I get these stabbing "ice-pick" headaches - usually on one side of my head (this time it's my left) beneath my ear and going into my temple some. But it's like this: perfectly fine...fine...fine...STABBBB!...fine...fine...STABBB!...etc., repeat that about 5,000 times a day. The stabs can come at one second intervals or half an hour or so...but they keep going. I've had them last a couple stabs all the way up to three months.
I had an MRI today - hopefully it's nothing...I've had them done before and they never found anything...so while I'd like to know what causes them - I'd rather the MRI came back negative.
I've not tried a lot of drugs - mainly because they'd eventually go away - plus I also HATE taking drugs...but geez - these hurt like crazy.
Everything I've read about these types of headaches it's always one or two stabs and then nothing. Does anyone else deal with the constant type? Seems the last "anonymous" person to post here experiences the same thing I do. If you're out there - and do...feel free to email me - I'd really appreciate the chance to compare notes.
Thanks.
I got way too drunk the night of my college graduation party... ended up headbutting the wall, which was plaster, and which I cracked with the top of my head. Three days later I was in excruciating pain in my right sinus, behind the eye, and it felt like warm fluid was moving down my head, neck and through my right arm. I had a disturbing tingling in my right arm.I stayed up all night and went to the ER.They did a CT scan and said my head looked ok. Since then I have had "sinusitis" four times in the last year. This Summer has been really bad with constant eye soreness and a constant ache at the back right side of my head for months. It seemed to go away a little and came back strong after a stressful event(death in the family). I have had three antibiotic treatments so I have ruled that out. I also hurt my neck just before I hurt my head last year and still have pain that comes and goes in that area. I wonder if it could be related? I flew to Florida a month ago which coupled with the stress felt like I hit my head all over again. This sucks.
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hi ive had excrutiating head and eye pain for nearly a month im 19 hospital and docs have done every test/scan possible.finally today after passing out and being rushed to er ive been diagnosed with cluster headaches gr8 to finally know wots wrong but after reading everyones comments looks like ive got a life of hell ahead of me. does diet trigger them off? ive noticed most of you recomend ice packs and oxygen any help or advise greatfull thanks
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