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Title: Just Diagnosed Post by frankzzzz on Aug 11th, 2006, 6:20pm I was just diagnosed with cluster headaches about 4 hours ago by a neurologist. I have to admit to being ignorant - I might have heard of cluster headaches before - but I'm really not sure. I was actually convinced that my headaches were from a growth I have in my sinuses - This guy is the second doctor to tell me they're not. Says it's unrelated. It will actually be good news to me if his diagnosis is correct. Yeah no surgery - but boo - it still hurts enough to want to die. I have been reading as much as possible. The Dr actually recommended that I go online to get more info (very progressive of him). All of the symptoms that I have come across online don't match mine. The one that stands out most is the wanting to do myself in - while in the middle of a headache. My headaches last longer than what I've read - sometimes 3 or 4 hours while I stand in the hall pressing my head against the doorway - or while standing on my head. I had to laugh while reading one Website that said not to be embarrassed about telling the doctor what you did to relieve the pain or what it was like. Wish I had read that before going to the doctor. I was embarrassed when I told him about the standing on the head thing - it's actually more complicated than that. I was also embarrassed to tell him I would have shot myself in the head Monday night if I could reach a gun (lucky I don't own any guns). I have pretty much have a headache almost constantly for about 3 months - it's always there but not necessarily intense. It gets intense where I just can't take it from one to three times a week. Have taken lots of different stuff - from caffeine to percocet. Nothing helps much. I'm not really sure about a lot of the symptoms - I really can't say that it is only on one side of my head at a time. I know that sometimes it is on one side of my head but when it gets bad, I don't know anything that's going on. I plan on getting my wife to look over some of the symptoms (the droopy eyelid thing, etc) that I've seen so that she can look me over next time I'm dying. Guess that means I'll have to wake her up. There is a cyclical nature to the episodes, but I don't have exact records. I'm not completely convinced that the Doc is right - but leaning heavily in that direction. If he's right, it is actually a blessing to know what's going on. I am starting a new job, in a couple of weeks and starting a PhD program a couple of weeks after that. I was not sure that I would be able to handle any of that, but just having an idea of what's going on will be helpful. The doc gave me prednisone - a real strange regime where I start with 6 tabs for 3 days, then 5 tabs for 3 days and so on. He said it could help break the cluster period (that's what he called it). He said, “when it works, it really works.” He mentioned the O2 but said he didn't want to try it yet. I also plan on trying the water thing. My wife always nags me to drink more water - guess this proves I should listen to her. Sorry if I carry on too much. Thanks for giving me a place to talk. frankzzz (Actually Todd, but I noticed that there is a Todd who apparently contributes work to the site so I thought I had better avoid confusion.) |
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Title: Re: Just Diagnosed Post by LeLimey on Aug 11th, 2006, 6:56pm Hello Todd, its nice to meet you, I'm sorry its here. I have a great deal of sympathy with your wanting surgery, I know when I was first diagnosed I just wanted it to be something they could cut out too. Surgery is a last resort though for CH not a first option! You're saying the headache is always there is ringing a few alarm bells I must admit. There is another condition called Hemicrania Continua which is a rare form of chronic headache marked by continuous pain on one side of the face that varies in severity. As well as the continuous pain there are occasional attacks of more severe pain. Symptoms are similar to Cluster Headaches: runny nose, tearing, eye redness, eye discomfort, sweating, and swollen and drooping eyelids; and can also be moe like migraine with nausea, vomiting, and sensitivity to light and sound. The disorder has two forms: chronic, with daily headaches, and episodic, where headaches may occur for as long as 6 months and are followed by a pain-free period of weeks to months until they recur. Most patients experience attacks of increased pain three to five times per 24-hour cycle. As you can see it can be easily confused with CH. I'm not saying you DO have this, just that it's worth checking as HC is very responsive to a drug called Indomethacin which would potentially relieve all your symptoms. Indo is a relatively cheap (prescription)NSAID so for the sake of trying it for a week or so you could find your magic bullet. I hope that helps a bit. Let us know how you get on okay? Helen |
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Title: Re: Just Diagnosed Post by frankzzzz on Aug 11th, 2006, 8:04pm Thanks Helen, I appreciate the concern and the info. I should clarify what I wrote earlier. I said "Yeah no surgery - but boo - it still hurts enough to want to die. " What I meant to say was yippee, it's great that I don't have to have surgery because it's not the growth in my sinusses causing the headaches - but boo - it sucks that the diagnosis means more headaches. I hope this is a little more clear. The good thing is that I can plan my life without having to schedule around getting my head split open. As far as the Hemicrania Continua: I will look into the Hemicrania Continua. It does sound a lot like CH. However, I don't have any light or sound problem and only on occassion a little nausea. As a matter of fact, I can go outside in mid day and the light doesn't bother me. Doing mindless labor outside actually seems to help. I have no idea how strict to interpret some of the symptoms - as being this is always the case or this is never the case or this is sometimes the case. That is why I'm not 100% sure of the Docs advice. Thanks again. I look forward to more info from you guys. Todd |
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Title: Re: Just Diagnosed Post by LeLimey on Aug 11th, 2006, 8:20pm You'll never have ALL the symptoms of anything, or not all at once at any rate! Those are the symptoms you should have a couple of though, not necessarily the migrainous ones either. The trouble with seeing a neuro is that they aren't necessarily a HA specialist. Neurology is a huge field and many of us have seen neuro's whose primary interest is something else. Given that your average doctor spends a total of 5 hours in medical school learning about headaches it stands to reason the rarer breeds won't be delved into very much at all. You are your own best advocate, you know how your pain is better than anyone else and helping yourself by doing your own research is very empowering! There is a quite hazy area between alot of HA conditions, it's easy to see how diagnosis is difficult when someone doesn't present in a straight forward manner, just be aware that wrong meds can potentially do more harm than good so if you feel there are inconsistancies with any HA type then keep digging. Keep us up to date too please! Helen |
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Title: Re: Just Diagnosed Post by Melissa on Aug 15th, 2006, 10:14pm Hello Todd, First off, I would definately start keeping a headache diary. The times you wake up, the duration and the pain intensity. It'll help not only you, but your doc pinpoint your condition better. Second, from what I've gathered, standing on your head during a "cluster" attack will actually make it worse, not better. I don't know of anyone who finds that doing it eases the pain. I could be wrong tho, but that's just what I remember. (I've been here 6 years next month) Third, there are different symptoms for each sufferer, but there are some usual telltale signs like the droopy eye (like Helen said), stuffy or runny nostril on affected side, the waking up 45 min or so after falling asleep with an attack, etc. Hopefully the predisone burst will help. I'm very sorry your in pain and I hope that you find a resolution to it. take care, mel |
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Title: Re: Just Diagnosed Post by Gator on Aug 15th, 2006, 11:30pm Hello and welcome, Todd. How long have you had these headaches? The reason I ask is beacuse the first cycle or so can present with less than classic features and become more "textbook" as time goes by. Standing on your head is something I have never heard a clusterhead being able to do during an attack. Just going horizontal can be excrutiating for most, nevermind inverted. Hurts me just thinking about it. [shivers] As far as surgery goes, as was said above, for clusters it is a last ditch effort as none of the currently available procedures are 100% effective even though the side effects of the surgery can be 100% permanent. That being said, personally, I'd rather have something a doc could cut out and be done with forever than something that lasts forever that there is no cure for. I prayed for them to find something in my MRI. Needless to say, they found nothing - except a cobweb or two. LOL If you do have clusters, it's not surprising percocet and other narcotic pain killers don't work for you. Clusters require a whole different type of treatment. Acute treatment is usually with oxygen or triptans such as Imitrex Injections or Zomig Nasal Spray. I'm not encouraged that your doc thinks it is clusters, but does not try oxygen. O2 rocks. It's cheaper and has fewer side effects than most meds. Prednisone can give you a break or even break a cycle if taken early enough. Ideally, though, prednisone is given in conjunction with a prophylactic type med (such as Verapamil, Depakote, Lithium and others) and then tapered off as the preventative takes effect. A trial of Indomethacin is usually a good starting point med-wise. Conditions like Paroxsymal Hemicrania and Hemicrania Continua respond well to it. Of course, that should all be discussed with and prescribed by your doctor. oh, AND RESEARCHED BY YOU. Doctors make mistakes. Sometimes very costly/permanent ones. Research and ask questions. Keeping a headache journal was an excellent idea. You should track the starting and stopping times, dates, pain intensity (0 - 10 with 10 beint the worst pain you have ever felt in your life), what (if anything) you did to stop the pain and if it was successful, weather conditions and food or drink consumed prior to a headache. Well, now that I have written the equivelant of a short novel and repeated almost everything that has been said, I'll say welcome once more and wish you all the best in finding a definitive diagnosis and proper treatment. Let us know how things go and don't be afraid to ask any questions you might have. There is usually always someone here that can help. Mike |
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Title: Re: Just Diagnosed Post by TxBasslady on Aug 16th, 2006, 2:41am Welcome to the board, Todd. ;;D You got good advice from Mike, Mel and Helen, so I won't add anything. Good luck with your doc, let us know how you're doing. Jean |
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Title: Re: Just Diagnosed Post by frankzzzz on Aug 16th, 2006, 3:04pm Thanks Helen, Mel, Mike, and Jean – for your concern and advice. After reading and reading posts from this site and other sites, I have to admit that I was pretty depressed since last Friday. Mike, after learning more about CH, I wished I just had a tumor that could be cut out. As far as the symptoms – I think I have several factors that may complicate identifying them. I will try to keep it short. I generally try to ignore pain (I have had chronic back pain for 20 years) and I find that doing this makes the details a little less clear. No I'm not some tough guy that can eliminate pain by telling it to go away but I do have a high tolerance for pain and I can sometimes deal with it this way. Also, if I have a 1 or 2 days where my back doesn't hurt, then I actually think of it of as "Hey - my back hasn't hurt in quiet a while". I'm am optimist and my mind doesn't always reflect reality. I can tell you the most important detail about the bad HCs - I want to kill myself. Also my nose is usually stuffy or running on one side or the other - I've had sinus trouble for years - so it would never seem unusual and worth remembering. I mentioned in my original post something to the effect that I have a HC all the time or almost all the time. That isn't really accurate. First my head does ache a lot, but after reading your references to shadowing, I'm wondering if this is what I should have said. You see, I almost always feel like I'm getting a HC or getting over one. I told my wife I was being stalked by an HC last nite. It hurts mildly, but it also makes it very difficult to concentrate on anything for very long. I only get the whoppers (Kip 9 or 10) from once every two weeks to twice a week - always from about 9 or 10 pm until 1 or 2 AM. This has been the case since May - it seems the frequency has been increasing over the months but once again I'm not real sure. That being said - I started keeping a journal on Saturday. I also started to pay more attention to exactly what was going on. My HCs come around 9PM - 12. I usually get a break for a short while and then it comes. This happens 3 or four times a night. Sometimes it only seems that a get 30-45 minutes break in between. Other times it may be longer. Usually I can go back to sleep sometime between 7AM to 9 AM and sleep til 11AM. I usually get hit again in the afternoon around 1 or 2. Most of the rest of the time I feel like I'm in a fog. Other symptoms are: my face sweats (both sides), my right eye sometimes feels strange – sort of like I can’t keep it open but it doesn’t look any different to me (or my wife). The pain seems to be behind my right eye (at least last night, this morning and as I am typing this) but this is not always the case and I’m sure that sometimes it is on the left side or centered in my temple. I also wonder if I have been doing a lot of things already that may have lessened the episodes. I have been drinking lots of energy drinks for the past year - more since the spring and the increasing frequency of headaches. I also take antihistamines and muscle relaxers. I have read here and other places that these things may help. I also tried drinking shots of liquor at nighttime in the spring and early summer to get rid of my headaches and help me sleep. (I used to do this for my back instead of taking meds) I could fall asleep if I drank 3 or more shots but I would only get a few hours sleep and have a headache from hell the next morning. I thought I just couldn’t handle my drink like I used to be able to – until I read about the cluster headache alcohol relation. I decided the liquor wasn't helping and quit a month or two ago. I’m still not totally convinced that I have cluster headaches – sometimes I lean that way and other times I tell myself that the Docs are wrong and that the thing growing in my sinuses is doing it. This might just be wishful thinking. I am actually doing much better today - and haven't had anything more than a kip 6 or 7 since starting the prednisone. Last night I was up every hour sweating but no HC. I have been taking a bunch of stuff, but since this post is so long, I won't go into it now. Thanks and sorry for being so long winded. Todd |
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Title: Re: Just Diagnosed Post by roy21302 on Aug 16th, 2006, 3:28pm Todd, nice to meet you, soory it is on this site. There is no need to appoligize for the length of your posting, there are loads of us out here only too willing to read it, we all know what you are going through at the present time, and we are thinking of you and your family. This Beast is a Bar------d, I am praying for some PFD for you, and feel free to put what you like on here you just might put something that triggers someone to reply with a useful tip good luck mate -----------CheersRoy |
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Title: Re: Just Diagnosed Post by chopmyheadoff on Aug 17th, 2006, 10:00am hi todd !! Just a quick note that alcohol is a very bad trigger for me and if i had a couple of shots before i went to bed id pretty much guarentee a hit. the hits also are a lot more intense when alcohol induced. good luck mate chopster |
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