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Title: How were you diagnosed? Post by MellowMe on Jul 1st, 2003, 9:04pm I'm new here--bad headaches for the past month. I looked headaches up and the closest I can ome toare clusters and or migraines. I have the one side of the head pain, and in the temple and behind the eye--it starts almist every night about the same tme. My doctor wats to do an MRI to be on the safe side and I am terrified. |
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Title: Re: How were you diagnosed? Post by BobG on Jul 1st, 2003, 9:21pm Welcome to the board M'Me. Sorry to hear you're hurting. Click the 'cluster quiz' button on the left side of your screen and take the test. Then come back and let us know. The MRI (and CT scan) is a common tool used to determine if there is something wrong in your head that can be causing the pain. If you are suffering from Cluster headaches then don't worry..........nothing will show up. |
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Title: Re: How were you diagnosed? Post by BlackDog on Jul 1st, 2003, 9:35pm on 07/01/03 at 21:04:24, MellowMe wrote:
MM, Sounds like CH, but take the quiz. I was diagnosed after my second cycle started. 1st cycle (last year) was mis-diagnosed for months. Then it stopped. When it started again this year, I was diagnosed very quickly. MRI is to rule out anything else, like a tumor. If you have CH, your MRI and CT scans will be normal. As for terrified, you will realize through this message board and your own experiences once you are diagnosed and receiving proper treatment, that you can manage and live with this disease. You are not alone. We here all understand. Welcome to you MM! Darren :) |
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Title: Re: How were you diagnosed? Post by MellowMe on Jul 1st, 2003, 9:40pm Thanks for both your replies--I am a woman and I understand that women do not usually get clusters, but the number of us who do is increasing. Strangely enough there isn't anything to the left of my screen to take the test--a "webtv thing" I guess. I'll check on my computer at work and thanks again! |
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Title: Re: How were you diagnosed? Post by Charlie on Jul 1st, 2003, 9:42pm Welcome to the fold. Headaches that wake one out of a cold sleep have a chance of being clusters. If so, you've come to the right place and look around. There are lots of good ideas on how to cope with this horror. My diagnosis was odd. I was already seeing a neurologist for epilepsy. The Sawbones told me what it was the minute I described them. He already had tests on me and said more weren't needed. (it was a different time) Anyway, he was right and he helped me with this technique: Dr. Wright's Circulatory Technique This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many. When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand. This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate. I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended. This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience. When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance. I wish you the best of luck - Charlie Strand |
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Title: Re: How were you diagnosed? Post by BlackDog on Jul 1st, 2003, 9:51pm MM, Here is the link to the quiz page...hope it works... http://www.clusterheadaches.com/quiz.html Good luck...I hope you pass ;) Darren |
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Title: Re: How were you diagnosed? Post by judyw on Jul 1st, 2003, 10:16pm Welcome MellowMe...Wish you weren't here, but since you are...this is the place for information, support, and laughter...Cause if you have CH, this is Home...Just had to slip this feminine word in amongst the guys...email always welcome....wishing you pfdn's...PPP... judyw143 |
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Title: Re: How were you diagnosed? Post by Linda_Howell on Jul 2nd, 2003, 12:21am I diagnosed myself by reading one medical book. That was long before I ever got a computer and found this place. After almost a year of MRI's, Mra's, Cat scans and tranferring me back and forth, the greedy Dr.s allowed that I have cluster headaches. Duh! Hope you get the answer soon and not waste any more time. Stop being terrified. If you have clusters, they won't kill you. Do what everyone has said.. BEFORE you go have the tests. You'll be more informed and much less scared. LindaH |
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Title: Re: How were you diagnosed? Post by jmorgan52 on Jul 2nd, 2003, 3:24am I have had recurring long bouts of headaches which were migraine-like for most of my life. I have seen numerous doctors, physios, neuros and such like over the years. None ever helped and I had sort of accepted that every year or so (sometimes I get several years remission) I would have a long spell of being woken with pain or get hit during work and have to come home or take days off sick. In the early 90's I went to see a nuerosurgeon to see if some surgery would help me. He asked me questions and a few minutes later he told me I had CH. I started to read up on it, and was amazed that the symptoms were so acurately described. The down side was that there was still no treatment that worked for me. Then about 5 years later he phoned me to ask if I was still suffering (Yes!!!!!) and prescribed me the newly released imigran injection. I was pretty shit scared to try it at first and continued to tough it out during that cycle until I got hit with a kip 10, vomiting and all (after a couple of beers!). I plucked up the courage to inject and 10 minutes later it was gone. I could not believe it was so effective, and have sworn by it ever since. John |
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Title: Re: How were you diagnosed? Post by juvy on Jul 2nd, 2003, 3:29am MellowMe, Don't be nervous about the MRI. The machine is really loud and actually triggered an attack for me but just keep your eyes closed and think of a happy place. the results of my MRI and CT said that i have very slight arterial brain damage on the right side of my brain. So as my brothers thought all I officially have brain damage :). Dr. thinks its due to the circumstances surrounding my birth and has no effect on my CPH. I was diagnosed with CPH by the medical university in Leiden after trying most medications for CH with no response. Keep us informed about whats going on and let us know your fears as most of us have had them at one time or another and are willing to talk you through them. Keep your chin and know that we're here for you. Cheers not tears or fears, Juvy |
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Title: Re: How were you diagnosed? Post by NotH20 on Jul 2nd, 2003, 3:41pm Another female voice here Mellow......it took me four years to get a diagnosis - had these ch's since 1980 >:( Take the tests and read as much as you can both on this site and the OUCH site....being well prepared for your doctor visits is a bonus in the right direction. Keep us posted and good luck to you, Mia |
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Title: Re: How were you diagnosed? Post by echo on Jul 2nd, 2003, 3:47pm MRI, Catscan, stress test, Ear Nose Throat specialist, Eye exams, X-ray, several visits to the neuro's, physicals, and the ever popular finger probe. Finally - yep you were right - it's CH. |
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Title: Re: How were you diagnosed? Post by Charlie on Jul 2nd, 2003, 4:07pm Don't fear tests on your noggin. They look dangerous and the machinery looks like Igor's rec room toys but they are painless and often very boring. I understand the brain itself cannot feel pain, only the surrounding tissue. Charlie |
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Title: Re: How were you diagnosed? Post by vig on Jul 2nd, 2003, 4:08pm I went through about 2 years with a doctor before I TOLD HIM that I had CH. I found it in books when I was looking up a friend's migraines. He'd never really heard of it before.?! Even then, he didn't know to recommend oxygen and put me on Amitryptaline (Elavil). How much time to doctors actually spend in Medical School studying cluster headaches? Is there even one day where they get a primer on this? It sure doesn't look like it. |
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Title: Re: How were you diagnosed? Post by Karla on Jul 2nd, 2003, 7:08pm It took about a year of solid doctoring before I was correctly diagnosed. I went to a dentist and an eye dr and a chiropractor all while seeing a dr and having physical thereapy done (thought it might be my ears and thought a manover that a pt does would clear it all up),mri, neurologist then ordered and did lots of tests and then said I had migraine and I said what about clusters and I explained my symptoms to cluster symptoms and was told yes I think you are right there. Needless to say it took a year of constant doctoring and way to many tests. |
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Title: Re: How were you diagnosed? Post by SommelierCH on Jul 2nd, 2003, 7:34pm I diagnosed myself the day after my first attack in 1986, by reading the Reader’s Digest, Medical Book of Home Remedies. There was absolutely no question or doubt in my mind (never had a headache before this, so it was easy to peg). At that time, they said that there was nothing to do for them, so I just lived with them, until my 2000 cycle. That’s the first time I had my cycle and insurance at the same time. That doctor had never seen a Clusterhead, but he was up to speed. I got O2 and Maxalt MLT 10mg. scripts right then, (I hadn’t found CH.com yet, so that was his idea). The nuero I saw last cycle (the last of 5 doctors), wanted to schedule me for an MRI, but then we both just looked at each other, and he said “If you have had this since 1986, I don’t think it’s a tumor, or you would not be here”. The MRI is nothing to be afraid about, no pain. I am guessing that you are afraid of what the results will be. It’s always better to know. Keep fighting, David J. |
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Title: Re: How were you diagnosed? Post by Marijke on Jul 4th, 2003, 2:31pm Hey Mellow! Another female here :) I was lucky to find that my GP has a friend with CH. So when I came to him, saying I had these terrible headaches waking me up from a VERY sound sleep, he immediately thought of clusters. So he made an appt. with a neuro right away. He told me CT and/or MRI scans are just to rule out anything else, because you can hardly test cluster. Being a woman, ask your doc (if they/you think it is cluster) for indomethacine, just in case you have the "sister" of CH, CPH. Some neuro's give it to any woman with CH |
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Title: Re: How were you diagnosed? Post by Locomotive_Skull on Jul 4th, 2003, 6:21pm Quote:
I started off the same way. M'Me, How old are you? Mine started in 1991, same as yours did. I have been diagnosed for a short time. My wife was looking up stuff on the net about headaches, found info on clusters (they seem to have tell-tale signs), made an appt. with a Doc. and wallha, I now have a title for my little friend. I don't have much advice to affer anyone really. I don't like meds and have no real preventive measure used for stopping an attack. I do however, know how you feel. I am the type of guy who, when having an attack, is completely dead to anything rational. So when I come out of it, I try to just forget about them until the next one rolls around, then on and on. When I am suffering, I want help, when I am not, I aviod docs and meds. Maybe I think I can still keep going on this way. During attacks, I can barely stand it, but I tell myself it will be over soon and I have awhile before another. I dunno. Seems like everyone that hits me, is the worse one yet. I know that in reality, I cannot keep going this way, so eventualy will seek out something. I just don't know what that is yet. An estimated 11,000 attacks since it all started. One more seems pretty small in comparison. ;) |
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Title: Re: How were you diagnosed? Post by sueellen83 on Jul 5th, 2003, 8:20pm Hi M'ME, Sorry to hear your hurtin'. I was midiagnosed with Trigiminal Neuralgia when I was 16. I was treated for this for 7 years. I took Bellergal S for several years and it helped. Then when I was 22 the Bellergal stopped working. My gp sent me back to the neuro. to start on Tegretal ( the main treatment for trigiminal neuralgia). I started having a CH in the Neuro's office. He immediately changed his diagnosis to CH. I wish you the best of luck!!! and PFD&N |
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