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Title: Does this description describe a CH? Post by awelsh on Feb 20th, 2007, 2:35am Hello everyone. I'm after some advice as to whether I'm on the right track or not. It all started one night when I was woken at 3:30am with a dreadful headache on my left temporal area. I had never had a headache so painful (not that I can remember really getting any headaches for the last 15 years). I can't remember the duration as I eventually went back to sleep. But by 5am that morning when I woke up I got the same headache and it lasted about 45 minutes of intense agony. That was 10 days ago. Since then I have had numerous headaches as listed below: Date Time Duration 10-2 - 3:30am - ? 10-2 - 5:00am - 40 min 11-2 - 1:30am - ? 12-2 - 10:15am - 1hr 16-2 - 2:45pm - 40 min 17-2 - 5:30am - 1hr 15 min 17-2 - 3:45pm - .5 hr 18-2 - 6:45am - 1 hr 19-2 - 8:45pm - 40 min 19-2 - 11:00pm - ? (each time I woke up I had it, but not as bad) I'm a 32 year old male, not over weight, a vegetarian and health conscious. I've noticed lately that my left nostril runs slightly when I'm having the attack. I have noticed once that my left pupil was slightly smaller than the right side (don't know if that is a consistent thing). After last night which has been the worst, I have had a low grade headache in the same spot all day which I feel is probably going to get worse like it did last night. Almost like it is building up pressure. Usually when the worst of the headache has gone (it happens very quickly) I can still feel a weaker headache in the same spot for the remainder of the day or night. All day yesterday I felt sharp stabbing pains ever now and then until late in the afternoon where I felt the pain building slightly. Then by 8:45pm It just hit hard and fast. I went to the doctors today and He has no idea what it is. He doesn't think it is a migraine or a tumor (I still need to get a CT scan done). He suggest taking pain killers. I took some and it didn't work. Apart from the actual headache and duration, there is really no other symptoms I'm getting. When I'm having the attack, I find I cover my left eye & temporal area holding it rather tight. Do you think this is the start of a CH or does my description describe something else? Thanks you so much for reading and for any replies/advice. Regards, Adrian |
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Title: Re: Does this description describe a CH? Post by Lobster on Feb 20th, 2007, 2:42am Hate to say it, but it might be. Take the 'Cluster Quiz' over on the left. And get yourself to a CH-skilled doctor. Get the meds, both the abortives and the cycle busters. At the point you are at, I personally would start a prednisone taper. That should stop the cycle in its tracks, but only for a few weeks. That will give you time to get some other preventative ramped up to full strength. I am vegetarian as well. Early on some told me that the lack of meat in my diet was given me these mysterious headaches. lol. ;;D |
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Title: Re: Does this description describe a CH? Post by JohnM on Feb 20th, 2007, 3:26am Your description and symptoms look spot on to me but I am no Doc. Take the Cluster Quiz and see what the results are. Painkillers don't work for CH - period! Ask your Dr for a sample of imitrex/imigran injection. It should clear up an attack in about 5 minutes. Maybe go to his room when you have an attack so he can see for himself. The autoinjector is very easy to use. This medication also comes in pills and nasal spray but is mostly useless for CH as it takes so long to get into the bloodstream. Good luck john |
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Title: Re: Does this description describe a CH? Post by LeLimey on Feb 20th, 2007, 4:09am You've kept a good record and that will be a big help to a neuro but you really need an MRI and adiagnosis from a HA specialist neuro to be confident. There are over 600 HA types and many symptoms cross so self diagnosis or listening to other sufferers is risky. What works for one condition KILLS in another - literally. Give triptans to someone with basilar migraine and you could kill them and yet they were invented for "migraine" It DOES sound very familiar - but we're only expert patients here! Good luck, let us know how you get on no matter what please okay? Helen |
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Title: Re: Does this description describe a CH? Post by duckie on Feb 20th, 2007, 4:45am Hi Adrian, I hope it isn't but if it is you're in the right place. I've sent you a PM re- neuros in sydney. PF vibes, Lii |
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Title: Re: Does this description describe a CH? Post by Guiseppi on Feb 20th, 2007, 10:31am Evertime I see that description of the hand pushing against the eye I think oh no!!! I'll repeat what you've already read. Our uneducated, based only on experience opinion is it does have some of the symptoms of CH. Take the cluster quiz, keep that journal going, get the scan to rule out the really bad stuff, and sit down with a doctor. If it is CH..I hope it isn't...then make yoursel comfy here in your new second home. Guiseppi |
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Title: Re: Does this description describe a CH? Post by JeffB on Feb 20th, 2007, 11:07am If it is, and it sounds like it is. Welcome home. |
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Title: Re: Does this description describe a CH? Post by Barry_T_Coles on Feb 20th, 2007, 6:11pm Hi Adrian & Welcome Sounds all too familiar & as good as mirror image of what most if not all of us have gone through in the early stage. Helen “LeLimey” has given you really good advice; as she says get you Doc to refer you to a Nuro who should check you out with a MRI if only to rule out anything dastardly. OTC pain killers even the prescription Forte is about as useful as a bucket of sand in the desert so don’t waste your money on them. Medical oxygen is a great abortive for a lot of us, its comparatively cheap and safe, speak to your Doc about Oxycare, its available through BOC gasses as a rentable but if the Doc doesn’t know about it go & talk to BOC yourself then take the info back to the Doc. Keep us informed as to how you are going, there’s always someone around 24/7 to help out. I see from you profile that your from Maleny QLD and not far from Brissy so distance to specialist help wont be that much of a tyranny. Cheers Barry |
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Title: Re: Does this description describe a CH? Post by starlight on Feb 20th, 2007, 11:01pm Yes it does sound like CH. The times you listed are "beast" times. I've had these for 20 years--don't ask me why but they like certain "times" the best. And some of those times are on your list. Go see a neurologist pronto. |
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Title: Re: Does this description describe a CH? Post by BB on Feb 20th, 2007, 11:47pm Please dont try/take any meds except f oxygen prior to getting a proper diagnosis. As Helen said, there are many typpes of headaches , some are similar in features but taking the wrong medication for the wrong type of headache is VERY dangerous. Tell your GP that it may be cluster headaches, ( can also be cluster migraines ) and ask to be referred to a neurologist who is experienced in treating headaches. If your GP doesnt know, he or she can ring the local hospital and ask the neurology department there, they will be able to recommend the right person. Take care and welcome. Annette |
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Title: Re: Does this description describe a CH? Post by awelsh on Feb 21st, 2007, 3:19am Thank you all so much for your replies and your welcome. I had taken the quiz (forgot to mention that) and it pointed quite heavily toward a CH. I just wanted to get some feedback from people who actually do have CH. I wasn't sure if it was normal to feel a very weak headache for long periods like I mentioned. I will continue to monitor them and hopefully they will go away (fingers crossed). If it is CH then I guess I'm stuck with them and will have to find a way to deal with it. Does anyone know if magnesium helps with CH like it can with migraines? Regards, Adrian |
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Title: Re: Does this description describe a CH? Post by BB on Feb 21st, 2007, 3:28am Many people here take magnesium and swear by them. Daniel takes magnesium and calcium supplement. Unfortunately there is no scientific way to measure the real benefit. However, most CHers have very poor appetite if any during a cycle and in general vitamins/nutrional supplement then is a good idea anyway. What you described does sound very much like CH and some people do have residual pain after an attack, especially if its a bad one. Daniel has these almost all the time, maybe its an Aussie thing? :P Painfree wishes to you. Annette |
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Title: Re: Does this description describe a CH? Post by Spoticus on Feb 21st, 2007, 6:28am on 02/21/07 at 03:28:37, BB wrote:
I dunno about the residual pain being an Aussie thing ;) Certainly though after probably half a week into the cycle the residual pain is there 24/7. That said I do find strong conventional headache stuff can do a decent job at taking the edge off it. I also tend to find the area the pain resides around my temple/eye/cheek becomes very very tender to touch. I actually hadn't seen it mentioned here before but I certainly do lose basically all appetite during a cycle. I have found that getting hit during a dinner function where you have to be eating particularly sucks. Even if I love the taste of what I am eating I find I begin to gag/have trouble swallowing when the pain kicks up. What can also be frustrating is that despite having little to no appetite I gain weight because I do basically no exercise at all during a cycle. |
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Title: Re: Does this description describe a CH? Post by Guiseppi on Feb 21st, 2007, 9:15am I've been doing the magnesium/calcium suplement for several years now. As with everything else about these things, they change so often you're never sure what the cause and effect is. Since starting the supplements my cycles have seemed less severe. Guiseppi |
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Title: Re: Does this description describe a CH? Post by georgej on Feb 21st, 2007, 9:22am on 02/21/07 at 09:15:24, Guiseppi wrote:
Same here. As far as residual pain goes--no it's not just an Aussie thing. To repeat what others have said, please see a doc. What you're describing sounds very familiar. Best wishes, George |
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Title: Re: Does this description describe a CH? Post by E-Double on Feb 21st, 2007, 9:32am Sounds pretty spot on. I hope not but if it is you have found your new home and safe place!!!! There are plenty of things that can be done non-medicinally: *ice *frozen peas *steam *melatonin or your Aussie eqivalent can help eliminate the nocturnal visits *caffiene!!!!! *for some rapid exercise can help (not I) *My favorite is to skin a dingo and to dance naked with the fur covering your afflicted side of the head. *Tin foil hats do not work as the alien implant is already deeply imbedded. Good luck and I will try to get you some resources when I am back at home Eric |
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Title: Re: Does this description describe a CH? Post by Mattrf on Feb 21st, 2007, 4:19pm http://i65.photobucket.com/albums/h209/mfranzen/TinHat.jpg Dam I just got this to! [smiley=laugh.gif] |
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Title: Re: Does this description describe a CH? Post by Barry_T_Coles on Feb 21st, 2007, 4:55pm on 02/21/07 at 09:32:03, E-Double wrote:
I'd try that but the little suckers are just to fast for me, but hey I can still go the naked dance bit. Isn't it good to still be able to smile through the pain ;;D Cheers Barry |
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Title: Re: Does this description describe a CH? Post by JohnM on Feb 22nd, 2007, 3:29am on 02/21/07 at 03:19:15, awelsh wrote:
You will often see mention of "Shadows" here. Nobody has yet satisfactorily defined them, but the "weak headaches" before or after a CH could be classed as shadows by some. Probably most of us suffer from them. John |
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Title: Re: Does this description describe a CH? Post by awelsh on Feb 22nd, 2007, 5:03am Well I had a real bad one last night. Guess I didn't cross my fingers good enough. Went to sleep at 8:30pm and woke at 9:30pm. The worst one I have had and it lasted an hour and then the residual lasted the rest of the night and most of today. I kept looking at the clock expecting it to last for 1/2 an hour like many of the other ones but it lasted twice that long. It sure does wear you out. All day I have been so tired I just want to go to sleep. I've tried the ice on my head but that didn't work. I really don't want to try the red bull as I know the side effects of caffeine and totally avoid caffeine. The oxygen sounds rather good. Barry you mentioned BOC Gasses here in Australia. I checked their website. Do you know how much it costs? Do I need a prescription before I can order it? I don't have a lot of faith in the doctors. Most of them just want to prescribe you a drug and never want to find the cause. The visit I made this week was a big waste of time and I can't believe they charge $75 for a 20minute visit, just to be told to take a pain killer! Thanks John for the info about "shadows" I didn't know what people meant when I read some other posts. Regards, Adrian |
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Title: Re: Does this description describe a CH? Post by BB on Feb 22nd, 2007, 6:26am Hi Adrian, The ice is to be put on the neck, back of neck or side of neck, usually towards the side of the headache. During or just before a hit, feel your neck as you may find a hot, swollen, soft spot , which would be the nerve ganglion getting fired up, putting ice directly on it will soothe the pain. Caffeine is good for CH as it is a vasoconstrictor, it can help abort an attack if taken early enough. Caffeine is actually prescribed in pills form or in combination with ergotamine for CH. Oxygen needs to be prescribed first. You can rent from BOC. You rent a regulator and an oxygen tank. The regulator cost $16 to rent a month, an E size bottle costs about $15 to rent a month, each refill is about $12 and they charge a delivery fee of $36.15 per delivery, no matter how many bottles you get. Its actually the same cost as welding oxygen. I can organise a prescription for oxygen for you and fax it to BOC for you. I am a GP practising in Sydney. If you wish PM me or email me and I will do whatever I can to help you out. Take care and painfree wishes to you. Annette |
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Title: Re: Does this description describe a CH? Post by kcopelin on Feb 22nd, 2007, 9:55am Another option on the O2-I found a regulator on e-bay for less than $50. That means I don't have to rent it...it is mine. Also, you can buy a cluster masx. which I highly recommend, becasue it is designed by a clusterhead and fits pretty much everyone and is very inexpensive. Otherwise, ditto on all the above. Hang in there-and come back whenever you need to =this is a good place to learn, to vent, to get support! Welcome, Kathy |
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Title: Re: Does this description describe a CH? Post by BB on Feb 22nd, 2007, 2:07pm Unfortunately, the regulator that you can buy on Ebay doesnt fit the oxygen bottle here in Australia, I have tried. Plus by the time you pay for shipping from US to Oz it would be more than $100. Annette |
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Title: Re: Does this description describe a CH? Post by kcopelin on Feb 22nd, 2007, 2:11pm Thanks Annette-didn't realize the bottles were different there. Rats! Well, then please disregar my post except for the clustermasx part :-/ PFDAN y'all kathy |
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Title: Re: Does this description describe a CH? Post by BB on Feb 22nd, 2007, 2:49pm This is an E size oxygen tank and the regulator with flow rate to 15 L/min and a clustermasx. http://i18.photobucket.com/albums/b149/bargainbazzar/DSC01661.jpg Annette |
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Title: Re: Does this description describe a CH? Post by Barry_T_Coles on Feb 22nd, 2007, 5:54pm Hi Adrian Check your PMs Cheers Barry |
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