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Topic: Please tell me YOUR symptoms (Read 433 times) |
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Squale
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Hi,I just got oxygen for my clusters and it seemed to fend off 5 h/a's already.32/m/CT cluster h/a sufferer for 4 years.Symptoms during h/a: moving deep pain from behind rt. eye to rt. ear to sore throat to back of neck to inner earache to teeth to jaw to temple area to whole rt. side of head and intense pain randomly taking a turn at all these areas for about 30-45 minutes.Then,it just goes away leaving a tired,muscles hurting from tensing,squinty eyed,VERY releived guy alone until the next time.I am just curious of others breif descriptions of their headaches.I know NOBODY in my life who gets true clusters and am real interested in hearing from some of you.
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eyes_afire
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Re: Please tell me YOUR symptoms
« Reply #1 on: Jun 14th, 2002, 8:01pm » |
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Hi Squale. This is THE place for information on cluster headaches. Research this board and the O.U.C.H. website and you will find tons of useful info about cluster headaches.
I'm episodic strictly left sided. Each cycle start erratically and builds up in intensity and frequency until the peak of the cycle. Generally my cycles last for 6 or 7 months (but this cycle is pushing close to 9 months  ). I'm most frequently hit early in the morning (3:30am - 4:30am is the dangerzone). During peak cycle I'll get hit every 12 or 24 hours like clockwork. Each attack usually goes for 2 hours if not treated.
Symptoms include constantly burning and twitching left eye sometimes twitching for 4 weeks straight every minute of every day during peak. Watery left eye. Left side nasal congestion. Pain is generally focused in and behind my left eye sometimes with sharp pain shooting out from my eye to back of head and left ear.
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| « Last Edit: Jun 14th, 2002, 8:04pm by eyes_afire » |
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jacjoemax
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Re: Please tell me YOUR symptoms
« Reply #2 on: Jun 14th, 2002, 8:02pm » |
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My clusters feel like ice picks being jabbed into the side of my head near my temple and around my right eye. The pain is so intense, my eye begins to water and this lasts around 45mins to an hour. I might be pain free for an hour or more then it starts right back up again. I'm into my third week of the cycle and have just been recently diagnosed. I have found slight help by pressing that side of my head into a very firm pillow right at my temple. I recently posted a topic about meds lokking for help...I hope this helps!
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Squale
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Re: Please tell me YOUR symptoms
« Reply #3 on: Jun 15th, 2002, 6:20am » |
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I forgot to mention my completely blocked nostril every headache.It seems sometimes I can predict a h/a by the weird feeling in my right nostril.I have read soooooo much on clusters over the years it seemed(to me) that I knew more about them than my fruitcake nuerologist! I can sometimes get momentarily releif from sneezing and the only way to force a sneeze is to yank on a interior nose hair which leaves my nostril sore long after the h/a but that 3-4 second releif after a sneeze is worth it.Strange, huh?
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kim
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Re: Please tell me YOUR symptoms
« Reply #4 on: Jun 15th, 2002, 8:12am » |
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Hi Squeale,
MANY folks here use the newer methods of 0xygen as an abortive with much success. Hope it continues to help you out.
There is TONS of info here about symptoms.
I know an attack is imminent by a tightening lump that forms in my neck/shoulder (almost always left-side) feels like a golf ball. Then I start jabbing my tongue in the upper inside left side of my teeth (gums and teeth begin to hurt), this spreads into my left nostril which becomes clogged and into my left eye which droops and tears like mad. Pain spreads throughout left side of face and head. At this point the attack is crankin and i am usually dancing up a storm. There is a vein in my throat (jugular?) which becomes engorged and painful. Usually lasts anywhere from 20 minutes to 1 hour. It has lasted much longer than this but only when attacks are "peaking". I usually get hit with these types of episode from 2 to 8 times daily mostly at night and in the wee hours of the morning (they wake me up).
I am an episodic sufferer. Lasts anywhere from 2 to 4 months and then remission for two years. I recall mostly in the spring and fall, but can also remember being hit at beach in summer. Go figur. I'm still scratching my head after 25 years trying to make sense of this senseless and bizarre disorder.
You will learn more about your illness HERE than anywhere or from any doc.
Well wishes, Kim
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cbolony
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Re: Please tell me YOUR symptoms
« Reply #5 on: Jun 15th, 2002, 10:57am » |
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My Ch last 4 to 8 weeks first 3 or 4 weeks 7-9 kip and
a few 10 kip .Been in my cycle since end of april still in
the cycle with 5-6 kip. Left side off my head, temple,left
eye ,nostril, upper gums.Top of head left side very sore
can't even touch my hair it hurts.I get CH 3-4 cycle a year for the last 4 years.I take imitrex 50mgs and imitrex injection
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oringkid
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Re: Please tell me YOUR symptoms
« Reply #6 on: Jun 15th, 2002, 11:43am » |
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I am left sided mostly (have only had 2 right side ever) starts with a burning sensation slightly above and behind left eye. Progresses to a cramping sensation (as if I was having a charlie horse in my head) pain becomes more and more intense and spreads to top of head, temple, around left eye, upper jaw, then lower jaw on left side, down left side of neck, sometimes into shoulder and arm. Left eye waters, left nostril clogs, left eyelid closes. Carotid artery (I think it's that, Kim not the jugular, but I don't know for sure) hurts. Pain builds and builds then at peak I start to get stabbing pains through that side of head (that is when I know it is getting ready to leave) main pain slowly leaves but stabbing pains can last much longer (especially at peak of cycle)
I am episodic. Cycle lasts 3 to 5 months average, 2 year remissions (didn't always have 2 year remissions though, used to be shorter)
I currently use no meds. I have been thinking alot about this lately and it seems to me that when I used the meds the cycles were longer and the remissions shorter. Could be a fluke, but.........
I'm gonna try O2 on my next cycle though.
Welcome to the city of the damned! LOL
Did I interpret you correctly? You are a 32 year old male from Connecticut? (CT?)
Sherry
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Squale
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Re: Please tell me YOUR symptoms
« Reply #7 on: Jun 15th, 2002, 1:39pm » |
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holy crap!!! I am not as unique as I had originally thought.I have to have my wife read this because,I feel, she thinks I over exaggerate "my headaches" as some people do.This is baffling,getting h/a's same time everyday with such exact symptoms,short lived h/a's,and such intense pain at times I just lay on bed or floor and roll around getting myself in a headlock or similar.Picture this in your mind: a grown man,5'10 230,laying on the floor,arm wrapped around his head(headlock),teeth clamped together as if saying "cheese" for a picture,swaying legs back and forth along with upper body swaying,labored breathing very loudly and quiet moaning as not to scare anyone.This is me! Two young, great kids who have to witness this(when they get a peek at my humble episodes).Dammit
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MarkHW
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Re: Please tell me YOUR symptoms
« Reply #8 on: Jun 15th, 2002, 2:53pm » |
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I don't have to picture it.... I live it, too!!! LOL
I'm 39, 6'2", 200 lbs and I often roll on the bed or ground holding my head as you describe.
The pain is intense and whatever gets you through.....
Mark
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The clusterhead formerly known as williamsmh.
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Linda T
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Re: Please tell me YOUR symptoms
« Reply #9 on: Jun 15th, 2002, 6:22pm » |
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Hi Squale: No you're not as unique as you think! ;D
I know a killer is coming when I feel what I can only describe as a lump in my throat. It actually feels like a swelling like a swollen gland on the right side of my neck right where you would feel your heartbeat. Within seconds (and I do mean seconds) the pain travels up the right side of my face and hits my temple and eye. My eye waters and my nose is clogged. The pain travels from eye down to throat back up to eye back down to throat etc... I've been lucky with 30 minutes and unlucky with two hours. It doesn't always go like this - sometimes it strictly hits my temple and eye.
I too can rock and pace and roll. However, I prefer to jump into a hot shower. Try it if you haven't already. If hot doesn't work some people have luck with cold. Heating pad doesn't work as well as shower. Neither does ice pack. Also some people have luck with excercise or caffeine.
Good luck. and wishing you all PFDAN always, Linda T.
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NotH20
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Re: Please tell me YOUR symptoms
« Reply #10 on: Jun 17th, 2002, 11:06am » |
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Rock and Roll Squale......that's what gets me thru these horrible things. Each cycle gets worse and worse for me - sorry to say. Usually last about 4 months about every 2 years. My pain is on my right side - and the same symptons as everyone else - droopy eye, bloodshut eye, tearing eye, stuffed nostril (sometimes twinging), right temple pulsating, entire head tight, pain down into my neck and top of shoulder, I get extremely hot and start sweating......it starts with an twinge and ends with a bang leaving me exhausted. Afterwards I'm freezing!!!!
I rock and roll around on the bed, floor, car - doesn't matter where. I squeeze my head too for a minute at a time - that relieves the pain for a second or two. I squeeze the artery in the left side of my neck and then let it go - that too affords some seconds of relief.
I use Imitrex injections, Zomig and Maxalt as my abortives....
Good luck to you Squale - glad you found us. 
NotH20
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Squale
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Re: Please tell me YOUR symptoms
« Reply #11 on: Jun 17th, 2002, 1:48pm » |
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Thanks to all who replied.I will print out this thread tto show "some" people what other true cluster headache people experience.I do not get migraines and am getting tired of trying to describe clusters to everybody(all though they mean well).
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kristi
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Re: Please tell me YOUR symptoms
« Reply #12 on: Jun 17th, 2002, 8:44pm » |
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Hi Squale
Sorry to hear about your CH and problems with the meds. I noticed you said you were going to print out this thread to show people so they will know what true cluster headache people experience. Somewhere in here  , there is an excellent letter written by Simon Bower, that is written to give to coworkers. It provides an excellent description of CH, what it is, what the pain is like, what to expect, etc. My clusterhead husband gave it out to everyone at his company during his last cycle. Problem is I can't find the damn thing - can anyone help with a link?
If not, I have a copied/pasted version my hubby emailed that I can email to you.
Hope you find the right med soon and are painfree!
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PSB
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Re: Please tell me YOUR symptoms
« Reply #13 on: Jun 17th, 2002, 9:13pm » |
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Hello everyone. I'm going through my annual bout of CH. I usually got them religiously every Jan. but last 2 yrs been mild since I started to use prednisone. So this year they came in march and were very mild......thought I got lucky. NOT! I have them now instead and the prednisone don't seem to work this year. Thank God for Imitrex injection. Anyway, I get the textbook retrorbital sharp pain in the right eye, always been on the right, along with all the mentioned symptoms, this year they are bad. Also they increase at night, for sure within the first few hrs of sleep and then right before i wake up. Its incredible, they seem to have a mind of their own, seriously.
But....good luck, I'm new at this site but seems to be a great help and a lot of nice people.
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cappuccinocarrie
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Re: Please tell me YOUR symptoms
« Reply #14 on: Jun 18th, 2002, 10:21am » |
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It is a big help to read everyone symptoms!
I get attacks in succession, maybe 2 weeks out of every month - about every other day inside those two weeks.
I feel as if someone just shot me in the head with a hot bullet, that is staying there
My heart races, labored breathing, some involuntary crying, - usually always right side, but once in a while left -
I beg my husband to squeeze my hand as hard as he can (which is very hard) to distract the pain.
I have hoped to die during h/a.-
no sinus problems - it is difficult to even notice jaw pain, or tense muscles- due to pain ---- you know what I mean.......
I would like to try O2 -
New to site and need to find new Dr.
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Linda T
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Re: Please tell me YOUR symptoms
« Reply #15 on: Jun 18th, 2002, 10:35am » |
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Dear cappucino: Sorry you're in pain but glad you found this site.
Can't help with the O2 as I've never tried it. However, many people here seem to have success with it. Before you go to a new doc/neuro print out as much stuff as you can from this site and bring it with you. A good doc will welcome this info.
Good luck and wishing you PFDAN always, Linda T
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Squale
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Re: Please tell me YOUR symptoms
« Reply #16 on: Jun 18th, 2002, 6:03pm » |
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Oxygen failed me last night for the first time since I got it 2 weeks ago(7 consecutive h/a's "blasted away,though).I am a lucky one to prevent my headaches with Excedrin at the first sign of h/a.Although a few times now(over 4 years) I think I caused a rebound h/a by taking 1 Excedrin(usual dose) prematurely.Last night was an example.Today,I felt the shadow all day but restrained myself from paranoia of "the h/a".I did not take nothing and as of now I have not had a h/a......um.....yet? I just may be leaving another cycle(4/year it seems).I guess I probably should start writing a diary of my h/a's for future reference.Oh I must say I am feeling good without a h/a today!!
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MarkHW
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Re: Please tell me YOUR symptoms
« Reply #17 on: Jun 21st, 2002, 3:55pm » |
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Hi Squale,
I'm a 39 year old male.
I have had chronic headache since I was 3. Migraine from 3 until late teens and cluster from early 20s until now.
My clusters are chronic... I go for weeks or months in cycle and then get a few days to a week off (unless I'm medicated). I started out episodic, but the cluster cycles got longer and closer together over the years.
I get 2-3 clusters a day. I start with a feeling of preasure behind my eye... within a few minutes it builds into a burning, pushing, searing, pain. My eye lid droops, I sweat, and go somewhat pale. I also usually have nasal congestion on the effected side.
The pain grows usually to a kip 7 or higher. I hold my head, rock back and forth, role around, and if the pain hits a 9 or 10 I pace (more like run) through my house pounding on my head.
My clusters are usually on the right side, but I have had them on the left, also (but maybe only 30% of the time).
The only things that work for me are Imitrex injections (95% of the time) and oxygen (40 % of the time).
Prednasone at 40 mg / day or more will keep away the clusters until I start decreasing the dose. I started Lithium the other day and have not clustered since - we'll see if this works.
If I'm not in one of my brief "remission" periods of less than a week, alcohol will always trigger one. The only other factors are lack of sleep and low preasure. Not sure if these really trigger or them or are coincidence.
Mark
P.S. I do have migraine once in a while as a result of rebounding from the imitrex. This is easily identifiable as a different headache because I don't sweat, my eye doesn't droop, the pain is in the temple, throbs, and is only about a kip 5 or 6.
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The clusterhead formerly known as williamsmh.
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kristi
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Re: Please tell me YOUR symptoms
« Reply #18 on: Jun 21st, 2002, 8:27pm » |
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Hi Again Squale!
Glad to hear you had a good day without pain.
I finally found the link to the letter I mentioned before, written to explain cluster headaches to others / coworkers.
http://www.ouch-uk.org/ch/note_colleagues.cfm
PFDAN
K
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Nancy
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Re: Please tell me YOUR symptoms
« Reply #19 on: Jun 24th, 2002, 12:26am » |
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I am new to this whole thing but a long time CH sufferer. I have just been calling them migraines for 25 years. I have always known my headaches where more painful and a lot different then my Mothers migraines, but the doctors said they where still migraines. I just found out 3 weeks ago that they are clusters headaches. I get them on the left side only. The pain comes on so fast there is no time to do anything, my warning sign is the pain itself! My heart starts racing so fast, I turn white, and I get sick to my stomach from the pain in my head. I burst into a sweat, as if I’m running a marathon. I start breathing heavy, and get a strong urge to move around, usually in the form of curling. I usually don’t have the straight to stand up and walk and when I have tried walking, I get too many bruises because I can’t see where I’m going. My left eye close’s all the way shut and it’s watering so badly I can’t see. My nostril becomes clogged and there is a SHARP HOT PAIN on the left side of my temple.
I guess I’m lucky because I’m an episodic sufferer, but I would never say that during and attack. I can get up to 6 a day on bad days. I had almost a 4-year break, but they are back worse then ever and medication wasn’t helping, until the Neurologist put my on Prednisone June 14. I started at 60 mg and am now taking 40 mg and will drop to 20 mg then done. It has been 9 days almost totally pain free. I still feel the beast within; he is still there. I just hope he doesn’t return when the medication is gone.
I want to thank Kristi  for giving that link! I printed it out and will be giving a lot of copies to everyone I know. I have to admit I cry every time I read about other CH sufferers. I feel bad for everyone, but at the same time feel relief that I’m really not ALONE! No one I have ever known can understand the pain we go through.
I pray that all of us can someday find some kind of permit relief from this beast within.
Nancy
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kristi
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Re: Please tell me YOUR symptoms
« Reply #20 on: Jun 24th, 2002, 8:29pm » |
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Hey Nancy!
Thanks for the thanks.  My hubby is the one with CH, so as a person who has never experienced the pain, etc. firsthand, I thought it did a great job of explaining CH to those who have never heard of it before. He too, printed it out and gave it to coworkers and found that it made an AMAZING difference in how he was treated when a CH would hit him at work. He also gave it to friends and family. We found that the letter seemed to strike people's curiousity and made them want to know more, so they asked him a lot of questions. He was thrilled to get sympathy instead of being treated like he was crazy or overreacting.
Hope your meds continue to work and you stay PAINFREE!
K
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| « Last Edit: Jun 24th, 2002, 8:33pm by kristi » |
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