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Title: New to the board Post by klong on Dec 25th, 2007, 1:38am Hi, It's 1:30 on Christmas eve and I fear going to sleep. I started having these headaches about two weeks ago, but they have come everynight since a week ago. I went to my Ear, Nose and Throat doc sensing it could be sinus related. He told me he was no headache specialist but my sinuses were clear. He gave me Imetrex and Fiorinal. He made reference to these "Cluster headaches" being a possibility since I am awakened at night with this. I go back to see him Wed or Thur and look forward to telling him I've made 2 rides to the ER since last Wed and while the combination of both pills help, it takes an hour for ANY relief. I have read up on these "Cluster headaches" and am CONVINCED I am suffering from these. While I'll be asking for a good Neurologist in the area Wed or Thur it was soooo reassuring to know that there are other people out there suffering from this. It's taken me 2 hours to find this site tonight. I am dreading trying to go back to sleep. Not but 2 hours ago my husband was walking with me outside in 32 degree weather helping me cope with this pain. I look forward to seeing the doc but I fear each night until then. |
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Title: Re: New to the board Post by Chappy on Dec 25th, 2007, 5:13am klong, So sorry to hear about your pain, and I really hope your headaches turn out to be something other than clusters. If they are, rest assured that 90% of sufferers are episodic, meaning that their attacks come in "clusters" of weeks (thus the name), then disappear for awhile. Nobody on this forum can diagnose you, you'll need a good neuro with headache experience to do that, but once diagnosed you want to start with the right treatment. You might want to take the Cluster Quiz on this site: http://www.clusterheadaches.com/quiz.html, and let us know how you do. It's based on the IHS cluster headaches diagnostic criteria. To help with sleep, get some Melatonin at the drug store. It's over the counter, and requires no prescription. Most clusterheads use it. Start with 9 to 12 mg, about 30 minutes before bed. It can help fend off nighttime attacks for many. I would recommend starting that RIGHT NOW. It's completely harmless, and could help tremendously. Treatment comes in two types: preventives and abortives. Preventives help reduce the frequency and duration of attacks, and abortives help stop the headaches when they hit. That's what the Imitrex is, but pills are pretty much NO GOOD for clusters - you really need a nasal spray or injection for these, so you might beg for one of those until you see a neuro. Be warned that they are expensive. The most common preventives are combinations of antiepileptics (Topomax or Lithium for most) and verapamil (a blood-pressure medication that works wonders for many). When many CH sufferers have a new cluster headache cycle start, their doc will give them scripts for Topomax or Lithum, Verapamil, and also a 10-day Prednasone "taper" to help out while the other meds kick in. Once the cycle of headaches ends, and they're headache free for a couple of weeks, they taper off of the meds (according to doctor's instructions). The abortive meds are used as needed, with the first sign of a headache. If you have to wait too long for a neuro, and have a sympathetic GP doctor, you may print the following article from one of the top CH neuros, which covers therapies for cluster headaches, and maybe your doc can work with you now to get started: http://www.plainboard.com/ch/chtherapy.pdf Like I said, pills are usually useless for cluster headaches, because like you said they take an hour or so to work, and most cluster headaches ramp up within minutes and can last only 30 minutes. That's why most CHers use Imitrex injections. Actually, after diagnoses you'll really want to get a prescription for oxygen. 80% of clusterheads use it as our fist-line abortive, and it's the best safe and effective way to kill headaches. Nobody likes the idea of having oxygen tanks around, especially with the stigma attached (my wife definitely didn't at first), but compared to $30-$50 per dose of triptans like Imitrex, and the side-effects and 2x per day restrictions they come with, you'll quickly realize the benefits. See this url for information: http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm. I got the biggest O2 tank I could 10 days after diagnosis, hid it next to a chair in my bedroom, and sucked on it every time I felt the first pains coming, and it prevented 9/10 headaches from then on. I hadn't been free of headaches in 3 years, and it was a godsend. Another thing that works well during attacks is an ice pack to the back of the neck on the headache side - it helps alot for most of us. Walking in the cold, as you've probably found, helps too. Some people say standing on cold concrete, barefoot, helps. Sitting still is obviously not an option, but it sounds like your spouse understands that. If you have clusters, this is the time to have your husband start reading the "Supporter's Corner" of this forum, because this illness will affect your husband very seriously, and has broken up many marriages. When I was diagnosed, I cried tears of relief for having a diagnoses after 7 years, but when I read about the illness I cried again, because it also means a lifelong struggle. There are people here on this site ready to support you and your husband, and you won't find a stronger and more sympathetic group of people around. If you're truly experiencing CH, you'll quickly learn that few people in your life will understand the pain of cluster attacks, but the people here understand them, and are ready to help. Get to see your doctor or neuro ASAP, because you need to get started on a treatment ASAP. Also, from my experience, if you meet a doctor that doesn't take your symptoms seriously, or won't treat your illness aggressively enough, FIRE THEM and go see another doctor. Eventually you'll find a doctor who understands what you're dealing with, and you can bypass years of pain and get on with your life. Best wishes to you and your husband, and I wish you the best of luck! We're all here to help you. Remember that many doctors aren't equipped to deal well with headache disorders, don't give up if one doesn't seem to understand, and don't give in until you find relief! |
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Title: Re: New to the board Post by Bob_Johnson on Dec 25th, 2007, 9:04am 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/consumer/index.html 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: New to the board Post by BarbaraD on Dec 25th, 2007, 10:27am One other thing in finding a doc... INTERVIEW the doctor. Remember they are PRACTICING and don't know everything (even the headache "specialists"). Ask questions - How many CH patients are/have you treated? What do you recommend (if O2 isn't on their list - thank them for their time - they don't know much). If they aren't "willing" to LISTEN - go elsewhere - you're wasting your time with this one. We've all been thru numerous docs (those of us who've been around with this for awhile) and KNOW what we're talking about when we say a "Good doc is not that easy to find - but they ARE out there!" Just keep looking till you find one. For now -- Get some Red Bull energy drink (or one of your choice) and Chug-a-lug a can at the onset of a headache. This gives relief to a lot of us. We've found out (from trial and error) that pain meds don't work on CH and are a waste of time for MOST of us and can cause rebounds if taken too often (even Excedrin). You've come to the right place for help. We DO know how you feel cause WE are going thru the same thing. I woke up with a 9-10 this morning at 4a.m. and had a 6 year old grandson ready for Santa. It SUCKS! But you get thru it..... Stick around and read read read. We've got YEARS of experience on this site. And someone is around 24/7 to help - that's what we do around here in Clusterville. Hugs BD |
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Title: Re: New to the board Post by Jonny on Dec 25th, 2007, 1:31pm Welcome aboard kid, sorry you had to find us (for your sake) Merry Christmas! |
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Title: Re: New to the board Post by klong on Dec 25th, 2007, 1:40pm Thanks everyone for the advice and support. I'll keep you posted on my doc visits and prognosis. I awoke this morning feeling fine. It's 1:30 and I can feel what I believe to be is the reminence of the pain behind my right eye. My right eye is "droopy". Last week I described the feeling to the doc as a "sleepy eye". I just don't feel myself. I am hoping this all was brought on by the chaotic holiday season and diminishes, but I don't feel like I've been under much stress. Less than usual actually. Thanks again and I appreciate EVERYONE'S advice. |
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Title: Re: New to the board Post by RichardN on Dec 25th, 2007, 8:42pm Hi & Welcome to Clusterville If you consume alchohol . . . STOP! It sucks, especially during the holiday season, but alchohol in any form is a major trigger for most of us when in cycle. A real beer (I will occasionally have a non-alchoholic beer), glass of wine or shot of brandy will trigger an attack within minutes for me. Another vote for 02 here. I can't take Imitrex (artery blockage and high cholesterol), so 02 is my only abortive . . . can usually kill him in minutes if used early-on in the attack. I keep 10 "E" tanks (the green-topped tanks you see all over the hospitals and in any doc's office (about 3 ft tall . . . easy to manage). You will need a script for 02 and you will need a regulator that goes to at least 15 lpm and a non-rebreather mask (the one with the bag). Copy the 02 info off this board and take to your doc. 02 IS a recognized abortive for CH. Start a headache journal NOW! Note the time, duration, and Kip (pain) level (see "the kip scale" . . link on left), and when you next see your doc, take the journal AND a copy of the Kip scale with you . . . can save a lot of time. Read, read, read and ask any questions you might have. There is no med or method that has not been tried by members of this board . . . and the answers you get comes from folks who truly know your pain. A note about Melatonin. You might want to start with 6 mg and then up the dosage . . . to get used to the grogginess which is common. You don't have 02 yet (but we will push you til' you get it), but if taking Melatonin and you have a "breakthrough" attack, sometimes it takes a minute to realize what woke you, "oh yeah, HIM again", and reach for the 02. Some like cold, some like hot. I will use cold in the early stages of an attack, but prefer hot if in the "dance" stage. For cold, try some frozen veggies/cranberries . . . whatever will mold to your neck/face. For hot, half-fill a couple of white cotton socks with rice . . . microwave one at a time . . . stays hot for quite a while and molds wonderfully to your face/neck . . . . much better than the water bottles I used to use. You've just stepped into a family whose only purpose is to help each other fight our common beast. Be Safe, PFDANs Richard |
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Title: Re: New to the board Post by klong on Dec 25th, 2007, 9:06pm Thanks for the info Richard. I am printing it off as I write. I have also researched and printed a lot of this info so tomorrow I can go into my doctor prepared. I do have a question....Does everyone suffer from the "shadows"? It seems I have these symptoms throughout the day. My eye is "droopy". Does this happen mostly on the onset of a CH or can it be part of the shadows? Remember, I haven't been diagnosed properly yet, but by doing this research, I hope to find some answers fast. I have a job where everyone depends on me and I work around 50 to 60 hours a week. 10 to 12 hours a day, and I deal with the public. I went to work Friday after taking a trip to the ER early the morning. I was advised NOT to go to work, but I had no choice. I was able to sleep in though. I have been researching doctors and looks like I am having to travel to find one. Tomorrow I go to see my ENT doc to follow-up. He said I could be suffuring from "cluster headaches" but was not a headache expert. He gave me the Imitrex and Fionrinal for the week and follow up tomorrow. Being that I have woke every night with 2 trips to the ER, I have a feeling he'll be recommending a Neurologist. Hopefully the right one. I would love to hear anyones comments. |
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Title: Re: New to the board Post by Guiseppi on Dec 25th, 2007, 10:18pm Very sorry to read about the "droopy eye". It's one of the common traits of CH. You have already been given some great advice in the previous posts. I was given fiorinal early on and it was the only medication that actually seemed to work on the "mechanism" of the cluster head ache pain. I have since found far more effective weapons. Again, the previous posts have been spot on as far as advice, push hard for oxygen. After 30 years it'll still stop most of my headaches within 10 minutes, often times as quick as 6! Good luck with the neuro!!! ;;D Guiseppi |
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Title: Re: New to the board Post by Ray on Dec 26th, 2007, 12:47am Quote:
Welcome to the nut house. I'm sorry for your pain. If, indeed you have cluster headaches, the Fiorinal and/or any other pain killers will be useless and have the added risk of "rebound" headaches and addiction. Please don't let that happen to you. If the Imitrex is a shot, it should be effective quickly, if it's a nasal spray, it will take longer but can still be effective. If it is a pill, it's going to take too long to help you. Try drinking an energy drink, like Redbull with both Taurene and Caffeine, quickly and colder the better at the first sign of a headache, that works to abort a headache for many of us. A cup of strong coffee may work in a pinch. Cold packs, or frozen peas applied to the painful side may help too. Wishing you all the best and pain free living, Ray |
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Title: Re: New to the board Post by tessistired on Dec 26th, 2007, 4:23pm Hi there and welcome to the Family!! I along with everyone else am glad you found this site!! You will learn so much which I am sure you have already as you mentioned with the research and such you have done. This place and everyone in it has kept me sane and helped me so much and I wish the same for you. So dont ever be afraid to ask anything or share anything with us cause we are all here to help eachother! Many blessings to you for PFDAN Tess |
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Title: Re: New to the board Post by artonio7 on Dec 26th, 2007, 6:49pm Hello Klong... sorry to hear of your misery. The advice that you've received thus-far is good advice and I have little to add that is different. Please come back often and keep us posted on your condition... or if you just want to moan... you will be amongst friends. If you ever feel the need to chat with someone you will usually find one of us in the ch chat room here... http://www.clusterheadaches.com/chat/... Be patient if no-one is there right away. with warm regards, Tony |
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Title: Re: New to the board Post by klong on Dec 26th, 2007, 7:56pm Went to the Neuro today and he diagnosed as "Cluster Migraines". Gave me Prednisone to "kill" the cycle and put me on Topamax and something else that the Pharmacy was out of until tomorrow. Also, gave me the Imitrex Spray "if" I get a hit. He said I shouldn't. The Prednisone should stop them. We'll see. He asked a bunch of questions and scheduled a MRI to rule out anything else. I didn't ask about the O2 this visit. I'd figured I'd atleast give it a shot since it was the first time I met him. Thanks talk to yall soon. |
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Title: Re: New to the board Post by Guiseppi on Dec 26th, 2007, 8:05pm The topomax is a good prevent...the imitrex spray is a good abortive............the prednisone should stop them immediately...it always does for me. When you stop taking the prednisone, keep the imitrex spray close at hand..........for some the prednisone will actually break the cycle, for most of us it just gives us a break while your prevent...in your case topomax...kicks into effect. Sounds like a pretty good doc.....but do push for the 02 if they come back. It really is a miracle fix for many of us!!! Guiseppi |
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Title: Re: New to the board Post by klong on Dec 26th, 2007, 8:37pm Thanks Guiseppi, Your comment about the doc makes me feel better. It was weird but I felt such a relief after leaving the docs office. I felt good about him but based on some of the other posts I was worried about using the 1st doc I came across. I was ready with material in hand thanks to all of you! Well see how these 1st meds go! |
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Title: Re: New to the board Post by Chappy on Dec 26th, 2007, 9:58pm It's odd that he called them cluster migraines - there is no such official IHS diagnosis. Maybe he just added "migraines" because that's a familiar word to people, and the mchanisk is similar. Just remember that the official diagnosis, according to the International Headache Society (IHS), the society of neurologist that defines the requirements for classification and dianosis, is "Cluster Headache." Also remember that a high level cluster headache is far worse than a migraine, according to those who have suffered from both, which can be an important distinction on the future. |
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Title: Re: New to the board Post by samborambo on Dec 27th, 2007, 10:52pm i have to agree with the above comment.. "cluster migraines" isn't a diagnosis. |
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Title: Re: New to the board Post by klong on Dec 28th, 2007, 12:49am Ya know it's funny that you(a CH sufferer) would point out how important it is to tell the difference between the both(CH and Migraine). Over the past week I started talking to co-workers about what is going on and they look at me strange. You get this, "oh I get those headaches too" kind of responses and then they tell you what they do for it. What you hear is what a typical migraine sufferer would do, get in a dark quiet place, no light. And then I "try" to explain the difference because for me, it is SOOO opposite, and they give me that look and tell me they have never heard of that before. I think to myself, well, people used to think the same about migranes (from what I've read). I've decided to stop trying to explain it. Anyway, as far as the "diagnosis" he called it cluster migraine. (Now his exact words were not "Your diagnosis is cluster migraines") And why he called it a "cluster migraine, I don't know.... And to be honest with you I don't care...As long as he can get this damn thing to stop coming back night after night. But I assumed he knew a little about dealing with this thing because of the prescriptions he was talking about. Based on my research before going into the office I didn't feel he was giving me the run-around. And that was something I feared greatly because, I wanted answers NOW. Last night I did awake around the same time with that familiar pain behind my right eye, though the doc said I shouldn't, he gave me the Imitrex spray in case. This time the pain wasn't coming on as fast, I walked a bit and felt the time between the "stabbing" become shorter and shorter, but not as intense, so I used the Imetrex spray. It took about 7 to 10 minutes and I started feeling relief. A lot sooner than the pill. I was only up for an hour and a half. Before it's been about 3 hours including down time. So I don't know if the Prednisone had started to work a little bit and that's why "it" didn't seem to come on as fast or it's possible this could be ending. Well see tonight. |
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Title: Re: New to the board Post by Jobette on Dec 28th, 2007, 3:36am Welcome Klong :-* Sorry that you are suffering, but glad that you found this place. There is alot of good advice here as you have already seen and heard. You are right in my book when you say that there is a difference between clusters and migraine, because they really are 2 totally diffent things or conditions. Unless he was talking about a cluster of migraines because you have been having them for several nights. I only said that to give the doctor the benefit of the doubt. Hahahaha You will have to give these meds some time to work, because 2 days is not enough time for them to get into your system, but know that you are on the right track. There is a link about clusters and the workplace, and I am sure that someone will be along soon to give it to you, but it helps others to understand what you are going through better than you could ever tell them. It helped me with my family too. Please try and be patient because this could be a long ride. Everyone here has an opinion and different ways of dealing with this beast, but we are all still in this together. |
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Title: Re: New to the board Post by BarbaraD on Dec 28th, 2007, 7:21am Klong, What dosage of topamax did he give you? (my maintenance dose is 100mg, but am on 200mg right now cause I'm in a high cycle - I'm chronic). A pred taper is good to give the prevent time to take effect. Might throw in some melatonin (9-12mg) for those night-time hits. For a lot of us it stops those. Tkaes a little time to get in your system, so give it a few days to start working. Try some Red Bull (chug-a lug) a can at the onset of a HA before it reaches a too high (over a 5-6). This will sometimes abort one. And for goodness sake ASK for the O2. If it works for you - it's a lot easier on the old system than the trex and works for a LOT of us. Keep some frozen peas handy for the back of your head/neck. Or heat if that works better. Some of us heat works/some cold. We're all different - what works or one doesn't necessarily work for the next one. The things we tell you work for MANY of us. You'll have to try different things to see what works for YOU. Keep us informed. Hugs BD |
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Title: Re: New to the board Post by txbeck on Dec 28th, 2007, 6:48pm Klong, Like Barbara, I am on a maintenance dosage of 100 mg of Topamax. I will consider tapering off in a few more months, but I am having no side effects and only occasional shadows, so I don't want to mess with the status quo. Be warned, though, that for many people, the side effects of Topamax can be distressing, especially in the first month or two. I suggest you not worry too much about how experienced the doctors are in CH, but about how open-minded they are and how willing they are to listen to you, and to learn about the subject and current therapies. CH is not a field that is taught in med schools and there simply are not very many experts in the world. If your doc is receptive to printouts you offer about oxygen therapy and other research from ch.com and ouch.org then you are way ahead of the game. Even though I am out of cycle and Topamax is working for me, I keep a tank of O2 on hand at all times. I won't get caught empty handed again. |
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Title: Re: New to the board Post by klong on Dec 28th, 2007, 9:42pm Thanks again for the info from everyone. Here is what he started me on. I am taking I guess a low dose compared to to most of you...... 50mg Topamax and 120mg Verapamil a day. Also I am on the Prednisone. The prednisone is temporary, it started 6 tabs 2x a day for 3 days, then 5, 4, 3....... And also something for my stomach. I guess the prednisone can eat at your stomach. Last night was PF!!!! ;;DAnd I didn't really feel and of the "shadows" today at work. Which was nice... My co-workers thought something was wrong with me because my face stays flushed but I told them it was the medicine. What should I look for as far as "side effects" should I be aware of from the Topamax? |
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Title: Re: New to the board Post by txbeck on Dec 28th, 2007, 10:28pm Topamax side effects: First the good news for most people, Topo generally causes weight loss! This may be because it changes the taste of some foods. In particular it makes carbonated drinks taste like a bad high school chemistry project. My lifelong Diet Coke addiction was cured in days! It often causes you to mentally grasp for words...I'm 66, I've been grasping for words for a while now, I can't blame Topo. I did experience slight tremors for a few weeks, but they never got bad and completely disappeared by 6 weeks. 1% of patients get kidney stones. I did. I'll take kidney stones over CH any day. Drink lots and lots of water, then drink more water. 50 mg is a lot if the doc started you on that. Usually they ramp you up by 25 mg a week or so. My doc had planned to take me up to 200, but at 100 I felt we had found a good balance between CH control and side effects. He agreed so now I'll check in with him every 6 months I checked my diary. The 4 months prior to Topamax I had between 4 and 11 HA per day, every day. The next week, on 25 mg I had 2 HA per day. Second week, 50 mg, a total of 8 HA and the first PF days I had had in 4 1/2 months. I love Topamax. That was last June and every day I am in awe. I've had these things since I was 22 and I never had anything to fight with before but painkillers, and they only caused more pain! By the way, I also take Melatonin at bedtime. It's a good sleeping pill for me even if it were not beneficial for CH. |
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Title: Re: New to the board Post by klong on Dec 28th, 2007, 11:14pm Wow....I can't imagine suffering from this for so long and having to live off the pain killers. You are a strong person....I'm sure there are a lot of people on this board who I could say that about though. I have to say this past week has been one of the most terrifying ordeals of my life (so far). Not knowing what in the world was going on. And I am not convinced it's over. But I have had a break and I pray for another one(break) tonight. I did notice that my coke tasted a little off today......I run a restaurant and I meant to ask some of my employees if they thought it tasted funny too. Huh. Appreciate the info. |
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Title: Re: New to the board Post by txbeck on Dec 29th, 2007, 12:47am I feel now that I have had it much easier than it might have been. Most of my episodes have been misdiagnosed, usually as sinus infections. Even when I knew better I accepted that dx! Duh. My first episode in '63-64 was nearly a year long and they kept me doped up with phenobarbitol then. It did nothing but make me a zombie with a killer headache and two mostly neglected babies. CTs and MRIs didn't exist so I had brain scans, EEGs and many neuro tests. No tumor, and no diagnosis. Once I read about a thing called Cluster Headaches I knew that's what I'd had, but didn't realize I was continuing to have them because they always manifested differently. 43 years later a cycle was practically identical to that first one, minus the crying babies, and even I couldn't fail to recognize what it was, and had been all along. Nobody had sinus infections for weeks or months on end two or three times a year, did they?. I had already figured out all the things that did not work. By then I was putting Hurricaine into nasal spray. Well, that seemed to be where the pain originated and it was more effective than pills, though momentarily agonizing. Anyway once I recognized it as CH I began a headache diary, found this site, printed out the basic info, took it all to my internist who recognized "cluster headache" referred me to a neuro, gave me a prednisone taper and looked at me oddly when I asked about Oxygen. To his credit, he has since done his homework and learned about O2 therapy for CH, but I am his only known CH patient to date. For years I tried any purported "headache cure." Chiropractic, magnets, NO carb diet (almost killed me), tricyclic antidepressants, even electro-shock treatments. Nothing cured them, of course, but I did discover pressure point therapy which does work for tension and for migraine. I can stop a migraine in seconds with no drugs at all, but nothing helped CH before last June. Again, I love Topamax. I am episodic, not chronic. Also I have a high pain tolerance. That's bad as well as good. Most of the shadows and low level HAs just get lost with the general aches and pains and I may not recognize a cycle until it is well established. Best of all, I have an awesome husband who has been my support system even when I didn't believe there was anything worth supporting. |
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Title: Re: New to the board Post by RichardN on Dec 29th, 2007, 4:43am Great posts Becky . . . and all above! And Klong . . . get yourself a lottery ticket tomorrow. I don't think I recall anyone coming here so quickly after onset of CH and being able to see a doc AND neuro and get effective meds as quickly as you have. If the pred taper and topomax don't completely stop your attacks, DO ask your neuro for the 02 script . . . . from your posts, sounds to me like he will be receptive. And by now you see why we refer to this place as "home" and "family". Be Safe, PFDANs Richard |
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Title: Re: New to the board Post by klong on Dec 30th, 2007, 1:36am I tell you what I'm reading tonight some of the posts and am thinking of RichardN's last post for me. If it weren't for everyone one of you who have suffered for so many years and always knew there was more to your condition, then I would have never been able to find all of you so fast. HATS OFF TO YOU!!!! For the first 2 or 3 days that these headaches came on every night at the same time, I thought I was going crazy. It was all I could do to think of what in the HELL could I have done to eat, drink, smell, stress over, etc to cause something like this. But I knew by the 2nd or third night that having a headache this severe every night at just about the same time, wasn't normal. So I went to my ENT doc. I had been to him before for sinus headaches. Anyway.....I'm not going into how I found you guys again. I am definately not one to chat on message boards, but after work I get on here and READ. And it is VERY reassuring to have all of the experience and stories of everyone so you don't feel all alone. Anywho, since on the meds Wednesday, I did have my first PFN on Thursday night. But last night(or this morning, Sat) I awoke at 6:45am instead of the usual 1:30am or 2am with a K4 or 5. Couldn't get back to sleep but felt it wasn't coming on as strong as normal. Gushed a Red Bull and took 2 hits of Imitrex. It took the edge off and within an hour I was back in bed. I can't just go right back to bed after feeling things taper off. I felt out of it all day at work. The occasional sharp stab behind my right eye, dull stabbing, but I could live with it at work, just felt out of it, in a daze, and everyone could tell. Good thing about all of this, I haven't had a K9 or 10 since 25th. What concerned me is that this was the first time I awoke in the middle of my sleep off of my "normal" schedule with the onset of on of these things? Why? I'm just scared this is something new. I was for sure that I had licked it in the first round. I know this can be trial and error just by reading everyones posts but I was just wondering if anyone had any thoughts? |
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Title: Re: New to the board Post by klong on Jan 3rd, 2008, 8:55am Had my MRI yesterday morn. and went to see the Optomotrist to check my eyes. He said everything was good with my eyes that he wanted to look at the MRI as well in a couple of days and follow up with him in 2 weeks. My concern is this weird sensation that I am continuing to have behind my right eye, where all this started from. My right eye continues to have that "heavy" feeling even though I have not experienced any headaches since being on the Verapamil, Topamax and Prednisone. The dull pain increases occasionally and seems to be more appearant throughout the day. Definately not bothering me through my sleep anymore. Any opinions? |
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Title: Re: New to the board Post by rocketman3104 on Jan 3rd, 2008, 9:14am It may be the monster trying to break through, but your meds aren't letting it. I just use o2 and triptans, but I get that feeling you describe behind my eye most of the time I'm in a cycle. It may just be the meds though. I can feel a twinge of pain when I look left of right rapidly. May just be the trimengial nerve is a litte aggravated. Thats the nerve that causes us most of this aggravation (hell)! Just my thought. |
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Title: Re: New to the board Post by klong on Jan 3rd, 2008, 9:22am Is there any hope for this trimengial nerve? It feels like such a strain on my eye? [smiley=huh.gif] Sometimes when I am listening to someone or in deep talk with someone it'll get stressed on and I'll loose my train of thought and touch my temple. That person asks me if I am OK. I noticed this yesterday at work. This is so aggravating. |
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Title: Re: New to the board Post by rocketman3104 on Jan 3rd, 2008, 9:38am I got use to it. Kind of scares me sometimes because I think I'm about to get hit. Like I said mine is just a bit of shooting pain. If it is bothering you alot I would talk to your doctor. |
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Title: Re: New to the board Post by klong on Jan 3rd, 2008, 9:44am Thanks for your experience. |
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Title: Re: New to the board Post by DennisM1045 on Jan 3rd, 2008, 9:47am I get it all the time too. Sometimes its quick jabs, other times its more of a long building and releasing of pressure over minutes. They last for and hour or so and then go away for a while. It is distracting and frustrating but you get used to it. -Dennis- |
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Title: Re: New to the board Post by rocketman3104 on Jan 3rd, 2008, 10:03am Just my 2 cents. Glad you found the board. If it weren't for this site, and everyone here, alot of us would still be trying to figure out what is wrong with us. If you haven't tried oxygen yet, it works wonders for most of us. Hope your cycle ends soon! |
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Title: Re: New to the board Post by rocketman3104 on Jan 3rd, 2008, 10:07am Hey, by the way are you close to Ft. Benning? Love your state. I was stationed there back in the late 80's. God that makes me feel old. :-/ |
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Title: Re: New to the board Post by klong on Jan 3rd, 2008, 1:58pm Yep, close to Fort Benning. Close to Cussetta(if that's how you spell it). Not originally from here, but I like the small town. Hey and you are so right about finding this place. It helps me get through all this worrying and not freaking out. Even though I still feel like I freak out, I atleast have somewhere to come and share and hear about other experiences. I still have 3 more weeks to see the Neuro again, hopefully I can hold out that long. I don't see it, because just as soon as things get stressful I won't feel like I can deal with this "eye" problem. Gotta get the kids........ |
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Title: Re: New to the board Post by klong on Jan 3rd, 2008, 2:04pm Hey Dennis, you are so right about the "distracting" part. I have the highest level position at my job, and my boss relies on me to help him, the company relies on me and my managers to train managers for the company, and I still have a store to run my own store, make my own sales, keep costs in line and keep employees happy. NOOOOO Pressure. This whole new "thing" is VERY distracting. I guess my next topic will be how everyone handles work and the "beast"? How does everyone do it? |
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Title: Re: New to the board Post by DennisM1045 on Jan 3rd, 2008, 2:46pm on 01/03/08 at 14:04:18, klong wrote:
This was one of my first questions when I came here too. It is hard at times but very doable depending on the severity of your CH, when it hits you and what you use to abort attacks. I'm a software engineer by trade and have managed groups of developers in previous jobs. I'm episodic and typically run 2 cycles a year for 6-12 weeks. My last job was very high profile and my cycle did interfere. However I made sure everyone who would notice what was going on knew what I was dealing with. There is a good collegue letter for that purpose here: http://www.ouch-us.org/chgeneral/colleagueletter.htm I carry e-tanks into work and keep them down in HR. That way they're not taking up space in my office and are close enough for me to get to when I need them. They have gratiously made an office available for this purpose. When I get hit, I go deal with it and I'm typically back in my office in 25 minutes max. I also keep a supply of energy drinks around and I carry Imitrex injections with me wherever I go. Of course your productivity does suffer when you are in cycle. The trick I found is to make sure that people see your producitivity resume to its normal level once the cycle is over. Of course there is always business travel or a day long presentation where you just can't afford get hit. If your Dr feels triptans are appropriate for your treatment, look into Frovatriptan. This is a long lasting triptan that can buy you 12 hours of PF time. You take it 3 hours before you would expect to get hit and it'll keep the beast at bay for the rest of the day. It's not for long term use yet as studies haven't been conducted to determine the long term effects. I hope this helps... -Dennis- |
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Title: Re: New to the board Post by rocketman3104 on Jan 3rd, 2008, 3:21pm Dennis is right, it is very doable. Just can't let it win. My e-tank and imitrex goes where I do. |
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Title: Re: New to the board Post by klong on Jan 3rd, 2008, 8:11pm Again, I appreciate all the info on your experiences. It sure helps. |
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Title: Re: New to the board Post by rocketman3104 on Jan 3rd, 2008, 8:53pm No problem, just take everthing one day at a time. You'll have little hiccups, from the h/a and the meds, just keep working through them. You can't let them stop you. You'll find out what works best for you and you'll learn to how to deal with other stuff. Just give it time. We'll help you through it. Having a good support base is a great thing. Don't forget to try the oxygen as soon as you can. Hope you have a good night |
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