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Title: newbie, considering eye exam and chiropractor Post by fliptop on Apr 29th, 2008, 5:45pm hi - first off, a brief history. i'm an episodic suffer, they started about 5 years ago. had about 3-4 per week for a few months, then they disappeared for about a year. they occured at anytime of the day, but usually not after i go to sleep (that's happened only once). at first, i thought they were migraines, and went to a doctor, had 2 cat scans, all came back negative. doctor scratched his head and recommended taking 4 ibuprofins when one came on (which is useless, as i'm sure everyone knows). the 2nd episode started 2 years ago, in december 2005 / january 2006. usually i would get one in the morning or early afternoon. the attack comes on w/in 5-10 minutes, lasts about an hour, then i usually pass out for another 2-3 hours to recover. when i get one during the day, it wrecks the whole day because i really can't do anything. what was unique about the 2nd episode is i thought i had it licked. just before lent that year, i got one while at mass. i prayed to God to send me a sign, anything, that was causing it so i could make them stop. then i had to leave the church and lay down in the van while i waited for my kids. what was unique about this episode was that the next week was lent, and i gave up caffiene that year (i don't drink coffee, but usually had one or two sodas throughout the day). for the 1st 10 days after i gave up caffiene, the headaches were more frequent and extremely intense, and i had one pretty much every day. then over the 2nd week they diminished in intensity until they disappeared completely. i figured it was the caffiene, and marvelled at how the Lord works in mysterious ways. (btw, i quit drinking alcohol 6 years ago, before the 1st attack, so i knew that wasn't the cause). i was wrong. they started again about 2 weeks ago, and the 1st one woke me up at 10:30pm, after i had gone to bed at 9:00pm. it was the 1st time i had been woken up by one, and i was so disoriented i didn't believe at first it was the same as the ones i had before (this happened before i discovered they could be CH's and found this website). now i'm getting them just about every day, around 8:00 pm, and they're worse than before. i hit a kip 10 this week when i told my wife i wanted to blow my brains out just to get rid of the pain. so she did some research, starting w/ webmd.com, and ascertained that they're not migraines, but the dreaded CH. after reading about them on wikipedia and finding this site, i'm going to arm myself with information in my battle. when i was 13, i injured my neck in a fall. i remember the doctor talking to my parents and me and looking at the xrays which showed the top 3 or 4 vertebrae in my neck were pushed forward. they weren't sure if i was born that way, or if it was the result of the fall. i have a client who's a chiropractor, and asked him last week if he thought the neck injury could be causing my headaches (at the time, i still thought they were migraines). he said he's helped many patients who had migraines. he asked me to come in for a consultation and to at least have my spine xrayed to see if it's possible my neck injury is contributing to my CH by pinching a nerve or something. i'm not entirely convinced this is the case, because the injury occurred so long ago (25 years before my 1st episode), but he said it's possible. before i see him, however, i plan on getting an eye exam. i work as an application developer and therefore spend many, many hours in front of a computer staring at a screen. again, i'm interested in ruling out eye fatigue as a cause (or contributing factor) for my CH. i've read just a little on this site before composing this post, but didn't see that much info about whether chiropractic adjustments had helped anyone w/ CH. so i'm wondering out loud whether this is the case. |
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Title: Re: newbie, considering eye exam and chiropractor Post by Guiseppi on Apr 29th, 2008, 6:29pm You probably won't have any luck with a chiropractic cure or an eye exam cure. I did the eye exam thing early on when we still weren;t sure what they were. If they are CH, you have a defective hypothalamus that is the root cause of your pain. When you are off cycle you have nothing to fear, when you are on cycle there are some basic triggers you can avoid, alcohol is a biggie for most, stress is too but it affects people differently. Some get an attack if they have too much stress, but many find it's when they relax from stress they get hit! So trust me when I tell you if it is CH, there are no easy, quick CURES. But there are many many many effective treatments which will give you a quality life back. Your best aproach will be a 2 pronged approach. Accept the fact most doctors know very little about this condition so it's up to you to learn all you can on the board, and assist your doctor in planning your strategy. 1: You need a good preventative medication. This is something you take when you're on cycle to reduce the frequency and intensity of your attacks. I use lithium other common prevents are verapamil and topomax. Many more for you to read up on. 2: An abortive strategy. A headache hits you now what? First line abortive should be oxygen. This will start to sound like a broken record but it's cheap, and effective for a large percentage of sufferers. Read the link on the left because it must be used correctly or it's worthless. Other great abortives are imitrex injectables and nasal sprays. Most pills aren't efective because these things ramp up faster then the pills can kick in. That's a lot to digest, you have much more reading to do on this board, again, DO NOT expect your doc to know much about these. They see very few CH patients in their lifetime and know very little about them. It's your job to assist them. For now try slamming an energy drink, any containing both caffeine and taurine, at the first hint of an attack. many can abort or really reduce a hit using these. And start reading like crazy, we'll help you any way we can, welcome to your new second home! ;) Guiseppi |
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Title: Re: newbie, considering eye exam and chiropractor Post by George_J on Apr 29th, 2008, 6:37pm In general, chiropractic adjustment does not appear to be particularly helpful for CH. I recall very few people who've said they received any relief from it. There have been a good number of reports of CH that occurred following head trauma, but it's by no means universal. Take the "cluster quiz" at the left side of your screen--it's not a method for diagnosis, but it may give you some insight into whether you're dealing with CH or something else. It's important that you follow through on getting a proper diagnosis--there are conditions that may resemble CH in some respects, but improper treatment or self-treatment on the basis of self-diagnosis may well be unhelpful, and could be hazardous. I hope that you find some relief from your headaches, whether or not they're CH. We'll try to steer you in some helpful directions. Best wishes, George |
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Title: Re: newbie, considering eye exam and chiropractor Post by DennisM1045 on Apr 29th, 2008, 8:00pm Hi Fliptop! Welcome to your new home on the Internet. I see you've already attracted the attention of two of our resident experts. They are both right on the money with the advice. Self education and a Dr willing to work with you is your best strategy. This damn thing is so individual that it takes quite a bit of experimentation and fine tuning to find that right balance between relief and side effects. I spend 10+ hours a day in front of two 25" LCD screens. Embedded software here. A CH hit makes it impossible to sit infront of the screens and get anything done I won't have to redo immediately but with the right tools you can limit the interruption. I use Oxygen right in my cube. No one even notices any more. I'm right back at it in 15 to 25 minutes. I spent a bunch of time with eye specialists. They didn't find anything wrong other than the optical nerve on my CH side being slightly larger than my non-CH side. They chalked that up to genetics and said it wasn't the source of my pain. Since coming here a year ago I've spent a lot of time getting to know what my options were and finding a solution that works for me now. I know I'll have to keep tweaking this as the beast changes the playing field but I'm winning this cycle and that's all that matters. -Dennis- |
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Title: Re: newbie, considering eye exam and chiropractor Post by brewcrew on Apr 29th, 2008, 9:05pm If you find a good one, your back sure will feel a whole lot better. But don't expect much from either an eye doctor or a chiropractor in terms of CH. Unless either one can figure out a way to adjust your hypothalamajiggy. |
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Title: Re: newbie, considering eye exam and chiropractor Post by mezza on Apr 29th, 2008, 9:10pm Hey fliptop- I completely understand your desire to find the root cause of these terrible things - I think about it alot- WIth that said- what do you currently do to manage your pain? See guiseppes post laying out a typical protocol- The previous posters have lots of experience in managing their cycles and have been down various avenues looking for a 'cure' I will tell you before I found this site, i was suffering. I had two cycles prior to this one . My cycles are usually 4 and 5 years apart and have been stopped completely in the past with prednisone nothing else ( wouldn't have known what to do anyway if it didn't stop cycle) This time it is 8 weeks and counting in terms of cycle length. I felt helpless and was so exhausted until i read everything i could on this site and armed myself with info. I found a good neuro ( on my second attempt) and am now painfree while still in cycle. Verapamil works for me and i have used various triptans to abort. My quality of life has returned and dare I say it - I kind of feel 'normal' again. So you can get relief and feel in control- While you may have issues with your eyes or your back- you may want to think about running this by a neurologist first ( look to the left on this site and click on the ouch website- list good neuros in your area- thats where i found mine) Certainly any good neurologist with experience dealing with CH could advise you whether to see a chiro or eye doctor for your head pain. Good luck to you and toss out the pistol- You won't need it and besides it doesn't really help head pain Kelly |
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Title: Re: newbie, considering eye exam and chiropractor Post by fliptop on Apr 30th, 2008, 9:11am all - thanks for the prompt replies. i'll try and respond to individual comments below: Quote:
unfortunately, i had myself so entirely convinced that it was the caffiene that caused them, i'm not sure i want to go back to drinking it. i have to say that i feel much better without it, all CH's aside. and, when i see people like my brother, who can't function without that morning cup of java, i think to myself about how chipper and awake i am in the morning *without* it and conclude i'm probably better off. i'm going to try some of the other remedies and try to avoid going back to caffiene. Quote:
i took the quiz before composing the post. the quiz results indicate it's probably CH. but, i'm still trying to make up my mind whether they're CHs or not. i won't make it up until after i have the eye exam and initial consult w/ the chiropractor. however, after reading about the kip scale, the traits, and some of the user comments, it really, really sounds like the problems i have are CH. it's possible that the only thing that prevented me from shooting myself in the head is knowing i have a wife and kids. and i've never, ever thought about killing myself before. but at that time, death seemed like a better alternative than the pain. jeez, that's horrible to think. Quote:
until now, i didn't know what to do. i've tried a lot of stuff - heat, cold, standing, sitting, kneeling, lying down, ibuprofin, aspirin, acetominphen, naproxen sodium, rubbing my neck, head and temple, nothing worked. so i've been suffering through the intense period, thrashing about, pacing, rocking, banging my head, begging God to help me, for about 30 minutes or more until it subsides enough to where i can relax a bit and wait until i can sleep it off. i have the sensitivity to light and sound, so i've found lying in bed with my head slightly elevated and a throw pillow over my right eye and pressed against my ear gives me just enough relief (after the intense period) to fall asleep. yesterday i thought about the oxygen treatment and it kind of makes sense. during a thrashing episode, my wife told me she noticed that i pant the whole time (i never noticed). she's tried to calm me down several times and get me to breathe regularly, but i just want to be left alone. could the panting be a signal that i'm not getting enough oxygen? i don't know, i plan on trying it to find out. Quote:
i'm going to do the eye exam 1st, then the initial consult w/ the chiropractor, just so i have an idea of what's wrong w/ my spine. after that, i'll take your advice and find one if the episodes have not stopped. |
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Title: Re: newbie, considering eye exam and chiropractor Post by DennisM1045 on Apr 30th, 2008, 1:01pm on 04/30/08 at 09:11:12, fliptop wrote:
It's about vasoconstriction. When you pant you raise your respiration rate and, if you do it fast enough, you hyperventilate. This will cause the blood vessels in your head to constrict thus relieving the pain. It doesn't work as well as O2 but is a technique I've used in the past. Also , try panting with your head in the freezer or in front an A/C on full blast. The cold air will help too as vasoconstriction is a side effect that can be brought on by hypothermia. So breathing cold air works better than warm air. Some folks swear by exercise which also raises the respiration rate and calls blood away from the head and into the extremities. These are but a few of the home remedies that work for some but not for all. We're all different... -Dennis- |
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Title: Re: newbie, considering eye exam and chiropractor Post by Bob_Johnson on Apr 30th, 2008, 2:15pm While there is a long list of eye related disorders which can appear as headache, it's not common to find a link between cluster and eye problems. Given that you are not clear on the type of headache issue you have, I'd suggest you start with a specialist as the first step, letting him make the choices for diagnostic tests, etc. --------- 1. Search the OUCH site (button on left) for a list of recommended M.D.s. 2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice. 3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate. 4. http://www.achenet.org On-line screen to find a physician. 5. http://www.headaches.org/ Look for "Physician Finder" search box. Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician. |
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Title: Re: newbie, considering eye exam and chiropractor Post by FK5 on Apr 30th, 2008, 2:33pm If you are diagnosed as having CH, I think this board can tell you, if the root ain't found here, I doubt it can found anywhere else. I am new to the board. I think I read every post from the last 3 years. I ain't no doc but i can tell you it looks to be an endless road to finding the true cause. My suggestion is if it makes you feel good looking for it through examinations or talking to people, than keep doing it. However, at the same time, I think it's important to get on the right treatment plan with the right doctor. I was in your boat for the last 3 years. This is my first time on prevent and abortive meds. I have to say, Verapamil 240mg in the morning and at night, plus my O2 when I needed it have been great for me. Everyone seems to be different in regards to meds but once something "works" you'll have such a greater confidence in beating this beast up. I'm not saying the beast won't fight you back but at least you are taking swings. Lastly, if your doc does not know about preventatives like a Verapamil or the use of O2, than get out of the office and find someone who does. If they don't know how to treat from the start they sure won't know how to adjust or try other meds. It doesn't make sense to me to try to convince or educate a doctor. It makes sense to be completely educated on CH and have a doctor who already is educated and experienced in CH. Pain Free to you all! P.S..If the root is head trauma, I think I reversed it last year with my Kip 10 against my wood floor. FK5 ;) |
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Title: Re: newbie, considering eye exam and chiropractor Post by fliptop on Apr 30th, 2008, 2:43pm Quote:
now that's interesting. last year (again, during lent) i didn't have any vices left to give up (caffiene was my last one). so i committed myself to losing 20 pounds. i started working out regularly, about 3-4 times per week, and lost 18. i was 2 pounds away from my goal when i got sick, sometime in october. i wasn't well enough for about a week to work out, and that did it, i was off my schedule and never went back. since then i've put on about 10 of the pounds i lost. when i have a CH attack, i can "feel" the blood coursing through my head and pounding on the affected area behind my eye. so i'm wondering if my blood pressure has been elevated somewhat since i stopped working out, and if that is contributing to the intensity of the pain. one thing that really struck home with me is talk of the "shadows." if that's what i think it is, where your head feels like you could at any moment have an attack, and you go through the entire day gingerly walking on eggshells to (hopefully) prevent one, is it ok to work out when your head feels like that? i've been afraid to break out my rollerblades for fear i'll be out on the trail and have an attack. and since this last episode started, i've had the "shadows" (if it is what i'm describing) almost all the time. in other words, i doubt i could work out without them. egad, this whole thing is so confusing and frustrating...... |
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Title: Re: newbie, considering eye exam and chiropractor Post by fliptop on Apr 30th, 2008, 2:54pm Quote:
hi bob - thanks for the advice. unfortunately, the ouch website had no listings for my state (west virginia), and the closest one is pittsburgh, which is 90 miles away. i've already set up the eye exam (i probably need one anyway, it's been a long time since my last one) for tomorrow, so i'm going to follow through with that. and since i have a chiropractor as a client, and i know i had the neck injury when i was a teen, i'm going to evaluate the spine xray with him and see what he recommends (for fixing that, but not necessarily my CH). i'm not trying to buck anyone's system, but before i pay big bucks to see a neurological specialist, i want to work with the local guys to see if it's all "in my head," so to speak. |
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Title: Re: newbie, considering eye exam and chiropractor Post by fliptop on Apr 30th, 2008, 2:58pm Quote:
that's good advice FK5, i will heed it. thank you. |
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Title: Re: newbie, considering eye exam and chiropractor Post by mezza on Apr 30th, 2008, 7:39pm good luck to you- if after visiting the eye doctor and chiropractor you find you are still having ha - please think about seeing a specialist so that your quality of life improves- I sure hope you find your cure- if you do please let us know - In the meantime lots of good information on this site to help you understand CH better- Wishing you well kelly |
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Title: Re: newbie, considering eye exam and chiropractor Post by Charlie on Apr 30th, 2008, 8:21pm Welcome aboard Fliptop. You've gotten some great advice and ideas here. My suggestion it that a chiropractor can do little if anything in relation to CH. I want to add a technique that works well for me and others. 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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Title: Re: newbie, considering eye exam and chiropractor Post by kevmd on Apr 30th, 2008, 10:10pm [quote author=DennisM1045 link=board=knowya;num=1209505555;start=0#3 date=04/29/08 at 20:00:37]Hi Fliptop! Welcome to your new home on the Internet. I see you've already attracted the attention of two of our resident experts. bit of experimentation and fine hey dennis....dont' sell yourself short, your right up there with them |
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Title: Re: newbie, considering eye exam and chiropractor Post by torro2005 on May 1st, 2008, 3:30pm Hello flipflop, I'm new here today and the first thing I red was your story about your accident and the neckinjurie. I'm like everyone here looking for clues and anwsers and did quite some research allready myself cause no doctor has come up with solutions and no one still has a definite clue where the cause of this monster is hidden. I know cause I'm dealing and recearching with CH for ten years now. I learned that many people with CH sufferd head- or neckinjurie somewhere in there past. Often many years before it started. I myself broke both my shoulders and colarbones and my c7 neckvertebrae. This one is dislocated eversince. I did some study about this region in the neck. In short it comes to this: besides the neckvertebrae lies a spine; the Trungus Vagosympathicus that binds two ganglions that are located between the neckvertebrae. One of them is called the Ganglion Cervicale Superius. This systym serves the nerves that go to the Arteria Carotis Externa and Interna, the eyelid, the nose area, tearsecretion and sweetsecretion of the according part of the head. If this system is damaged or obstructed it can cause vasodilitation (vanes pomping up) and the Horner sydrom that accounts for all the other symptoms that occur during a CH-attack, like the dropping eyelid, the noserunning, the crying tears, the sweeting head and the stiff pupil. The vasodilitation (swolen vanes) causes the pain. That's why any good and fast vanecontractor brings relief or ends the attack (like sumitriptan-injections). Even a cup of very strong coffee can do the trick when you drink it fast, running it through your mouth first (the caffeine is more rapidly absorbed then) by the first signs of an attack. I'm going to get an MRI-scan of my neck-region soon and me and a fysiotherapist are going to study this to find out if anything can be found here. We do an MRI-scan cause this is the only scanning method where the weak parts can be made visible in a good way. I'll keep you and this side informed offcourse and like to wish you succes. greetings, Gerard |
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Title: Re: newbie, considering eye exam and chiropractor Post by fliptop on May 3rd, 2008, 9:20am Quote:
Quote:
yeah, all that went out the f'ing window last night, when i asked my wife to pour out the last energy drink in the fridge for me. it's funny how, no matter how good your intentions are, when the pain hits you'll do anything to get rid of it. it was the first caffiene i've had in more than 2 years! not sure if it helped or not, if there's a next time i'm going to try it sooner (i waited about 30 minutes before trying it) to see if it helps. |
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Title: Re: newbie, considering eye exam and chiropractor Post by Kirk on May 3rd, 2008, 12:08pm Just make sure that your energy drink has plenty of Taurine and Niacin (B-3) in it along with the Caffiene. You don't need all the sugars and other crap they like to throw in there. IMHO [smiley=smokin.gif] |
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Title: Re: newbie, considering eye exam and chiropractor Post by purpleydog on May 3rd, 2008, 3:57pm on 04/30/08 at 09:11:12, fliptop wrote:
IF you have CH, and that's IF you have it, it's not something you are going to make up your mind about having. Either you have it, or you don't. Chiropractors don't help CH. They may help with various other neck/ head related problems, including migraine, but not CH. The first thing I ever did when I started having problems, was to see my opthamologist- twice- and then my GP diagnosed me. My neurologist treats me. The chiropractor cannot diagnose you, and neither can the optometrist. The closest my opthamologist would get was to say he considered it to be a neurological problem. You need to "lay out the big bucks" to see a neuro. There are ways to relieve the intensity of the pain, Oxygen is the first thing that comes to mind. But the neurologist needs to rule out other things that you could be having. Try to get into one who specializes in headaches. You can also be having mutilple headache types, like migraine too. There are other headache types that can come into play. And the meds we take for CH don't work for other headaches, and are dangerous in the quantities we take them in. But get to your neuro! Chiro's and eye docs can't/ won't do anything for you, believe me. And they can't prescribe. Read this thread: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1209588038 It may give you some ideas on how to prepare for the first neuro appt. Also, one other thing. When hitting the O2, or slamming an energy drink, caffeine, or whatever abortive you may end up getting... you need to hit it at the FIRST SIGN of a headache. Don't wait until you are 30 minutes into it, it just makes it that much harder to kill, if you can kill it at all. I'm sure you don't like rolling around on the floor in pain, so get thee to a neuro. And go prepared. |
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Title: Re: newbie, considering eye exam and chiropractor Post by fliptop on May 6th, 2008, 2:30pm Quote:
hi purpleydog - i understand what you're saying. i won't be convinced until i'm diagnosed by a dr. i should've been more explicit in stating that i'm not convinced because i have not received that diagnosis yet. i will say this though - how many other types of headaches can there be where the victim has the desire to shoot themselves to relieve the pain? my guess is none. because i've had a kip 10 where i thought about doing this (before i found this website and learned about CH), my mind is pretty much made up. however, the diagnosis from a dr. is still necessary. |
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Title: Re: newbie, considering eye exam and chiropractor Post by Superdave on May 6th, 2008, 7:41pm Hey Fliptop, I also gave up caffeine for years, until I learned I had ch and vasodilatation was what was causing this pain. I love Coffee, Tea, Cokes, Pepsi, Dr. Pepper all that stuff. Now I drink them at will and real happy to do so. :) For me if the redbull and or caffeine helps, Drink it. Ch attacks hurt like hell and caffeine is the least of my worries. No matter what diagnosis you get, slam that redbull as fast as you can, maybe it will help you. At one time I was taking imetrex pills as the only abortive I had. Always washed them down with a redbull, thinking it was getting into my system faster that way. It wasn't the 30.00 pill aborting the attack it was the redbull. I waisted $100.00's with this approach ;;D Redbull is cheaper than a pistol and one bullet! :o Superdave 8) |
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