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Title: New here, help would be very appreciated please Post by vv1nd on Apr 2nd, 2006, 7:13pm Hello everyone, my name is steven. This is my first time posting on this message board, and I am looking for some feedback to the symptoms I am having as to whether or not they may be from cluster headaches. The explanation I will give might be long, so if you bear with me I would really appreciate it.... I am a 19 year old male with brown eyes (from what i've read, eye color has some significance in cluster headaches) and no family history of cluster headaches. Back in November, I was woken up one morning by an awful headache that was focused around my right eye and radiated to the top right side of my head, and to my cheek bone and jaw. Laying down did not bring me any comfort, and instead, getting up and taking a shower as well as some tylenol did me much better. This headache kept happening on random days at around the same time in the morning for about 3 or 4 weeks into the month of december (sometimes during days i would feel little spurts of pain around my right eye that would only last a few minutes). Here are the details surrounding the days on which I would have headaches: -The headaches would not cause nausea, dizziness, or vommiting. -I have had no cognitive problems, memory loss, confusion, etc. -I have had no vision problems with them, no slurred speach. -My appetite for food remained perfectly normal, and many times when i get one of these headaches, it's very likely for me to be hungry and eat with no problem -the headaches are just pure, irritating (sometimes extremely painful) pain that lasts from 25 minutes to about an hour. -sometimes it feels like deep back within the nostril on the side i have a headache (the right side), it feels like it's somewhat congested. But when i blow my nose it's really hard to get anything out, but i can feel it back there. Of course back in december, the new onset of these headaches made me very very panicky as i am a HUGE hypochondriac. i mean HUGE. I was incredibly scared that I had a brain tumor, but my doctor assured me over and over not to worry, and that i most likely had some kind of sinus problem, or, a cluster headache condition. Well he perscribed anti biotics for me, and whether they were the cause of it or not, my headaches went away completely as the month of January started and I forgot about them completely. January went by, and February went by with no signs of headaches. Then, a week (or maybe 2) into March (as the season was getting ready to change i believe), I wake up one morning with the exact same kind of headache from back in the winter. And now, as of today (april 2nd, 2006), it seems like it's happening all over again. The headaches (or should i call them face aches, the pain is always around my eye and radiating to my cheek) i get occur around the same time in the morning and subside with Tylenol. During the day, i get mini-attacks that last for a couple of minutes and go away. On a few occasions, the eye i get a headache around has gotten red and watery (i don't think the eyelid droops however). So all in all, from the reading I have done, it sounds very much like i have a cluster headache condition, especially with the remission phases i have. But i would like to hear what experienced people on this board have to say because I worry about everything and am still very scared that I have a brain tumor or something (althought if i had a brain tumor, i do not think i would be in such otherwise healthy condition seeing as these headaches started all the way back in november). I know this was a long read, so thank you in advance if you give me some feedback. Take care. Steven |
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Title: Re: New here, help would be very appreciated pleas Post by E-Double on Apr 2nd, 2006, 7:32pm Hey there, I sure as hell hope it is not though it does sound very familiar. Take the cluster quiz located on the menu <<<<<<<<<<<<<<over there It does not substitute a proper diagnosis but is very telling. There are a few headace types that present similar to CH but differ in duration and responsiveness to medication. Get yourself to a HEADACHE Specialist or atleast a good thorough doctor that is familiar with the noggin. Not all treatments work for everyone and being that you have no meds @ this point nor have you been officially diagnosed, there are a few things that might be able to give you some relief non-medicinally. Some tricks that I used to use and sometimes still do are: *Wrapping a bandana tightly around my skull (be careful) *Filling a sink with scaulding water creating a steam bath and placing my head over it with a towel covering it. *Going from Steam to Frigid shower. *Standing infront of A/C *Icepacks or frozen veggies on the back of the neck or eye *Tons of STRONG coffee. If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep. With the exception of 8-10 times.....I have slept through the night since August.....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time. Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not... The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern. I stayed with melatonin and have had decent sleep overall. It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression..... Like I said we are all different. Best wishes, good luck & stay as positive as you can!!!! Eric |
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Title: Re: New here, help would be very appreciated pleas Post by vv1nd on Apr 2nd, 2006, 7:44pm Hey, thanks for the feedback, i appreciate it. What seems to seperate me from most of what i read about cluster sufferers, is that my headaches aren't SO bad that i want to scream, thrash around, bash my head, smack my face, etc etc. They can be very very painful, but they do not stop me from functioniong completely (although i do often prefer to be left alone to wait it out). I already know that i have a high pain threshold so maybe that has something to do with it, or can cluster headaches vary from person to person in the intensity of the pain? |
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Title: Re: New here, help would be very appreciated pleas Post by Kevin_M on Apr 2nd, 2006, 7:53pm on 04/02/06 at 19:44:44, vv1nd wrote:
I can only say what I've experienced and read here from others feeling the same and wouldn't diagnose, but I've never read this before from anyone experiencing clusters, on 04/02/06 at 19:13:51, vv1nd wrote:
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Title: Re: New here, help would be very appreciated pleas Post by Jonny on Apr 2nd, 2006, 7:59pm on 04/02/06 at 19:44:44, vv1nd wrote:
Son, you do not have CH, be very greatful that you dont! |
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Title: Re: New here, help would be very appreciated pleas Post by vv1nd on Apr 2nd, 2006, 8:07pm That normally would make me happy, but now I'm left worrying that it's something worse. This may sound odd, but I'm so worried that there is something wrong with my brain that I was actually hoping to hear that it maybe be cluster related. NOT saying that it's an easy thing to deal with, but having mysterious headaches like this, it would be nice to have something to give a name to it. Cluster headaches are non-life threatening from what i've read. I'm a horrible health freak and now I'm worried again that i have some sort of tumor. |
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Title: Re: New here, help would be very appreciated pleas Post by E-Double on Apr 2nd, 2006, 8:08pm DOCTOR!!!!!!!!! |
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Title: Re: New here, help would be very appreciated pleas Post by vv1nd on Apr 2nd, 2006, 8:19pm but my symptoms seem to otherwise perfectly outline CH |
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Title: Re: New here, help would be very appreciated pleas Post by E-Double on Apr 2nd, 2006, 8:24pm on 04/02/06 at 20:19:39, vv1nd wrote:
We're not doctors dude. We just have a collective millenia of knowledge. Go to the doctor and and try to find some relief. In the interim you can try some of the non-medicinal "tricks" that I suggested. Good luck!!!! Eric |
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Title: Re: New here, help would be very appreciated pleas Post by lionsound on Apr 2nd, 2006, 8:27pm 1. We are NOT doctors...please get thee self too one. 2. You may have clusters or something else....get out a calendar and use it as a headache/pain symptom diary so when you go to the NEUROLOGIST you can get help sorting it out. 3. I would ask the doc for an MRI to rule out other stuff and keep your sanity intact. |
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Title: Re: New here, help would be very appreciated pleas Post by Kevin_M on Apr 2nd, 2006, 8:32pm on 04/02/06 at 20:19:39, vv1nd wrote:
There are other afflictions with similar symptoms. unbearable pain is characteristic of clusters. A doctor who deals with headaches can sort them out as Eric has stated. |
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Title: Re: New here, help would be very appreciated pleas Post by rapunzel on Apr 2nd, 2006, 8:35pm While I can empathize with you and your fear of the unknown, I have to say that those of us with clusters could easily compare Tylenol with Pez candies...they both have the same effect on a cluster. Your symptoms are somewhat similar, however if you can still function, dont thrash, and think its because you have a high pain threshold- it probably isnt cluster. I would have to say every person here that experiences clusters has a high pain threshhold- how many people do you know that could voluntarily slam their head into a wall/tree/sink/door/headboard and simultaneously try to crush in their temples to stop the agony- over and over again every day/night for decades? Clusters are debilitating to say the least, and have nothing to do with pain tolerance. We have no choice but to tolerate the agony, which therefore gives us stronger tolerance for other pain. Child birth doesnt hurt as much as a single ch episode. Have the doctor run tests, beginning with Xrays of your sinuses, and continue thru an MRI. Good luck. |
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Title: Re: New here, help would be very appreciated pleas Post by vv1nd on Apr 2nd, 2006, 8:57pm Then i guess what i have is most likely not CH. To give you an example, I'm even able to drive and do fine with it while having some of my worst attacks. I guess that's not an activity a CH sufferer would even attempt to try :-/. I was just under the impression that cluster headaches hurt differently from person to person. That yeah, it may be absolutely unbearable to some people, but to others they may not be driven to bash their heads. So i guess it's safe to conclude that everyone on this board ONLY has EXCRUCIATING headaches? |
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Title: Re: New here, help would be very appreciated pleas Post by rapunzel on Apr 2nd, 2006, 9:01pm we have various degrees of hell- see the kip scale over there on the right? That pretty much sums up what ch sufferers experience..however, there are days that have what is refered to as 'shadows'- which are symptoms without the pain, or as much pain. These will come before big attacks, or for some people, after a big hit....or, in my understanding, at the beginning or end of a cycle. I cant diagnose you and say whether you do or do not experience clusters, however, I can tell you that in the middle of a ch, there is no way I could drive no more than someone who had just been shot in the eye and temple with a nailgun could drive. |
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Title: Re: New here, help would be very appreciated pleas Post by Guiseppi on Apr 2nd, 2006, 9:05pm I have another counter opinion for you! Again, the disclaimer, I'm not a doctor but I've played doctor with playmates when i WAS MUCH YOUNGER!!! I'm 46, have had clsuters since my late teens. I'm episodic, generally 2 cycles a year. When they first started in my teens, they weer like you. They hurt like hell, but i could function. They prescribed glasses thinking bad eyes were casuing it. Tried the infected sinus thing like you. The problem was, they would dick around with different ideas, then the headaches would stop, so you'd think they were gone. 4-6 months later they'd be back. It wasn't until my early 20's that the ice pick thru my eye kind of pain started. I genuinely hope Johnny is right and you aint got clsuters, my heart tells me otherwise. Score some oxygen next time the headaches start, that'll be a good insicator. Good luck. Guiseppi |
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Title: Re: New here, help would be very appreciated pleas Post by lionsound on Apr 2nd, 2006, 9:44pm on 04/02/06 at 20:57:07, vv1nd wrote:
no... lots of us have many headache types going on at once. I have 3....I get stuff all up and down the pain range. still, when i went to a neuro the first thing he did order was an MRI. we just don't want to see you take meds you don't need. please let us know what happens. be well and pf! |
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Title: Re: New here, help would be very appreciated pleas Post by Kris_in_SJ on Apr 3rd, 2006, 7:01pm Hi, As you've already read here, each cluster sufferer is different. My first cycle went totally undetected, except that it was diagnosed as sinus problems, shingles, minor stroke (because of the droopy eye), and low thyroid problem. I had constant, low-grade pain in my eye and temple. I will tell you, however, that no tylenol, no Vicodin, no other pain meds ever made that low-grade pain go away. Just one day I woke up and it was gone ... only to return 5 years later as a classic case of cluster headache syndrome. Keep a diary of your headaches. Note the time, frequency, duration, what you take, what works and doesn't. Then see a frigging doctor! You'll probably have to undergo a CT scan and MRI to rule out other really bad things. Costly, but worth it. You could have any number of headache syndromes, but until you find out which, you have no options for treatment. PF Wishes - Get Busy! Kris |
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Title: Re: New here, help would be very appreciated pleas Post by TxBasslady on Apr 3rd, 2006, 9:24pm Steven, When I started having CH, my symptoms were pretty much like yours. The pain was bad....but not so bad that I couldn't function. The headaches were very short term...maybe 15 minutes or so, and it seemed that Ibuprofen made them go away. I know now that the Ibuprofen made no difference.....the headache went away on it's own. I went 2 or 3 months before I had another CH. I would have maybe 3...then go another month or so with none. I went a year and 1/2 like this. Then...I went into a full blown cyle. I was scared to death. The pain was unbearable....I couldn't function...I couldn't sleep. Since we're NOT docs....we can only share our personal experience. I would never say you don't have CH...but I can't say that you do either. See your doc....ask for a MRI to assure yourself that all is ok. Lots of meds and treatments for CH, if you find that you do have them. Great support here on this board will get you thru the bad times. Let us know when you see your doc. Jean |
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Title: Re: New here, help would be very appreciated pleas Post by Mr. Happy on Apr 3rd, 2006, 10:49pm on 04/02/06 at 19:13:51, vv1nd wrote:
Indomethicin. Give it a shot. It's cheap. Great for Chronic Paroxysmal Hemicrania, a close cousin of CH. Multiple types of HA's are common here. Although you're not beating your head on a pipe railing, that doesn't mean it's not CH. This whole thing is a crap shoot for diagnosis/treatment, and you may just be in the early stages. There's plenty of time for things to get worse. RJ |
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Title: Re: New here, help would be very appreciated pleas Post by Chillrmn1 on Apr 4th, 2006, 3:30am Steven, You've been given alot of good advice here. As others have said, get to a doctor and get a correct diagnosis so you can be given proper treatment. Regardless of your malady, you can't get the best of relief until it's determined what type of head pain and why that you're experiencing. Best of luck to you, Bob |
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Title: Re: New here, help would be very appreciated pleas Post by Scott S on Apr 4th, 2006, 10:26am I will concur with all of the above posts indicating that you follow up with a doctor. Start with your general practitioner who can order some basic testing, and also order you some Oxygen. You can also ask him for a referral to a good neurologist or headache specialist. You can then try the oxygen when you get your headaches and see your response. I think most of us would agree that if you got relief, chances are ou are suffering some sort of headache syndrome. You can go from there. With some of your symptoms, I wonder if you may have some facial (trigeminal) neuralgia which could explain the severe facial, nasal and eye pain, but also explain the lack of vice-grip style pain that absolutely stops you in your tracks and does make you want to bang your head repeatedly hoping that you can jar something free. And the fact that medicine seemed to have cleared it up indicates possible infection in that area. Now I say this all with caution because of your self proclamation of hypochondria and certainly don't want to send you off on yet another tanget . So please follow the majority of this advice and follow up with your Dr first and proceed from there. Be well, Scott |
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Title: Re: New here, help would be very appreciated pleas Post by jmorgan52 on Apr 4th, 2006, 1:00pm my headaches aren't SO bad that i want to scream, thrash around, bash my head, smack my face, etc etc. on 04/02/06 at 19:59:49, Jonny wrote:
Jonny - don't write off the CH diagnosis just because of this comment. I have had CH for over 30 years but never yet felt the urge to thrash or bang my head, nor do many others here according to past surveys. Many do feel that urge I agree, but for me isolation in a dark quiet place lying down is what I prefer. John |
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Title: Re: New here, help would be very appreciated pleas Post by vv1nd on Apr 4th, 2006, 1:14pm I appreciate the advice and support everyone has lended me. I have been to a doctor twice about this who is one of the best diagnosticians in the area and has assured me not to worry, that it is either sinus related or cluster headache related. He said if he was really worried about me he would have told me to get an MRI right away. However he did tell me i can consider getting one for my own personal relief, which at this point i think would be best since i tend to get myself into a panic about this....so i think that will be my next step. Fortunately, these headaches do not interfere with my every day life. Something interesting i noticed yesterday was that my headache came and went in exact timing with a big thunderstorm. As the storm came and got worse, so did the headache around my eye/cheek. My nose got congested, and the soft tissue around my eye felt like it had liquid or air pockets in it upon being touched. This all went away instantaniously as the storm went away.. Does anyone else have cluster headache symptoms that go in accordance with the weather? |
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Title: Re: New here, help would be very appreciated pleas Post by rapunzel on Apr 4th, 2006, 2:13pm on 04/04/06 at 13:00:09, jmorgan52 wrote:
lying down? You can lie down? I am in awe. Kim |
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Title: Re: New here, help would be very appreciated pleas Post by vv1nd on Apr 4th, 2006, 2:42pm For me, lying down is the last thing i want to do. If anything, it makes me a million times more restless and "stuck" feeling. |
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Title: Re: New here, help would be very appreciated pleas Post by BlueMeanie on Apr 4th, 2006, 8:40pm Steven, In my opinion, (i'm no doctor disclosure) what you've described in your posts about eating with no problem, you don't have a need to dance around or scream or to bang something against your head, you can drive with no problem and you say Tylenol helps, then you most likely do not have Clusters. It sounds like the symptoms of another type of ice pick headache or one of the several other types that have been suggested. I would keep checking doctors and/or neurologist to pinpoint the pain you're describing. Good luck to you. Hope you find something that helps. |
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Title: Re: New here, help would be very appreciated pleas Post by jmorgan52 on Apr 5th, 2006, 9:37am We are all different. As I said I prefer lying down in quiet isolation where I close my eyes and try and tough out the extreme pain. I cannot funtion on any level otherwise and the thought of food or driving or just about anything is impossible. Maybe I am just resisting the urge to bang my head? >:( Steven - As for the pain you explain "The headaches (or should i call them face aches, the pain is always around my eye and radiating to my cheek)" This seems a bit odd as most people get the pain behind the eye and into the temple and trigeminal nerve. You may or may not have CH, it may be CPH (you mention the spurt of pain that only lasts a few minutes sometimes) ? or you may just be getting a milder "early onset" of what is to come in later years - sorry I don't mean to depress you. As for the frequency of 1 in March, 1 in April and some back in December it sounds more like migraine. With CH you can unfortunately expect several or many excrutiating headaches every single day for weeks on end usually at fairly fixed intervals - for me it is like 2am, 6am, 11am, 2pm, 6pm, 11pm - day in and day out for at least 8 weeks most years. Talk to your Dr about imitrex injections - they work for both migraine and CH. If it is CPH then I believe Indomethicin stops them in their tracks and is a good indication of CPH diagnosis rather than CH Good luck John |
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Title: Re: New here, help would be very appreciated pleas Post by Mikey99 on Apr 5th, 2006, 11:19am To vv1nd My headaches started out just like yours when I was 14. I was able to function even though I was in pain. Sometimes my eye would tear and become very red. I would still be able to stay in class and just put my head down. If I was at home I could lay down and somtimes go to sleep. Tylenol did work back in those days. At this time, my headaches would come every 3 months and last for 2 weeks. Each year the headaches got worse and wosre to the point where I could do nothing but pace the floor , crawl or whatever until the pain left. Tylenol made it worse-- the headaches became unbelievable. I started going to the the doctor and ended up down the road of most of the people here: many meds and little relief. Sure hope that you don't have clusters but just want you to know that I started out like you. If you are uneasy during a storm, while you are in cycle, this could tigger a headache or increase the intensity. Make sure that your Doctor has you checked out by a neurologist. |
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