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Title: Hello... first time here Post by waterblue on Sep 16th, 2007, 5:59am Hello ppl. I've found this place fairly easily, which is good. To cut a long story short - My whole childhood, and education, was ruined by migraine. I haven't come for that. This is different. I believe I am now getting cluster headaches between 11.30pm and 12.30am each night. I didn't get one last night. I had a spell of this a few years ago, and a couple of other spells too. I'm sitting here. I have deep scratches in my scalp where I have scraped my head. I've now cut my finger nails. I have some scratches on my forehead and around my eye too. Please don't think I'm crazy. The truth is, the pain is so bad, I am NOT in control. I've also scratched of some of the skin of my gums in my mouth. I couldn't help it. I was trying to mask the pain in my neck, temple, eye and face. When I've had this in the past I have done other things to cover the pain, such as stick paperclips into my gums. When it happens, I always talk about suicide, and my husband has to deal with all this. When the pain goes I always say I'm sorry for wanting to kill myself. Please don't think I'm just some lunatic who's found a website to play on. I feel I can't approach my doctor with this. My husband is the only one who knows. I've been on migraine meds since I was a child. Everyone's sick of hearing about my migraines, etc etc. I have also been taking 8 paracetamol ('tylenol'?) a day for around 15 years. I have "chronic daily headache" caused by paracetamol overuse. My doctor says my liver and kidneys are fine and my body has found a way to flush out the excess paracetamol. I've been on all the varios triptans and betablockers for migraine. None work well. I've been settled with zolmitriptan for several years now. So - you get the picture - I'm 36, suffered from clinical depression and migraine with aura since a child - everyone is FED UP of me and my headaches. I can't tell anyone. And this thing, this extra headache is killling me. It is NOT migraine and it is NOT part of my 'normal' headaches. It is crushing, burning, it feels like my eye socket is being sandblasted. It feels like my face is on fire on the inside. It turns me into a suicidal Jekyll and Hyde. The only way, as yet, I know how to cope with it is to mask the pain with some other pain. As far as painkillers go, I'm an expert - like most lifelong migraineurs are. But for this, I might as well be swallowing jellybeans. PLEASE HELP. |
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Title: Re: Hello... first time here Post by phil_h on Sep 16th, 2007, 8:05am Welcome to the site...... Read everything here...... You really need to find an md that can help you . We cannot and don't deal with this alone... Here you'll find compassion,understanding,empathy and alot of experience in battling the beast.... Proper medical support by a doc , competent in treating clusters is a necessity ..... There are no questions you can't get lots of answers to or suggestions about here... Sorry you needed to find this place , but thanks to DJ you have a port in this storm......Wishing you pfnad's and help on your journey through stabilization and recovery .. you're not alone any more........... phil h |
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Title: Re: Hello... first time here Post by waterblue on Sep 16th, 2007, 8:21am Quote:
*grasps on to that phrase* |
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Title: Re: Hello... first time here Post by MJ on Sep 16th, 2007, 12:15pm on 09/16/07 at 05:59:02, waterblue wrote:
Hi. Take the cluster quiz in the links. This will help in deciding the possibility of clusters. Some of your symptoms may fit in but some of your descriptions dont. Your right most pain meds wont touch a cluster and nothing can mask the pain of a full hit. A severed arm may not be noticed during a hard hit but sure would be after. Why cant you talk to your doc? If he/she wont listen get another one. You can talk here but you need to get CH diagnosed or advice here may be dangerous to you. Quit hurting yourself!!!! It doesnt help, REALLY!! Wishing the best. |
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Title: Re: Hello... first time here Post by barry_sword on Sep 16th, 2007, 1:01pm If your Doc is not listening anymore how about finding another or even better yet a referral to a neuro. Have you asked about o2? It is a lot easier on you than some of the stuff you are trying. Sorry you have to be here but welcome and take the CH quiz as already suggested to the left. Hope you get the proper help you need. Hang in there, you are not alone with this and we understand the pain. Barry |
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Title: Re: Hello... first time here Post by waterblue on Sep 16th, 2007, 2:29pm I took the quiz this morning. It came out pretty positive, although I know it's really not a good idea to self diagnose. But I KNOW for sure this is something different. I can't stand it. I really can't stand it. In the UK if women go to the doctor repeatedly about headaches, they are branded hypochondriacs and do not receive help. I have been lucky to get the help I need for my migraine, and I have only got that because most 5 year olds don't start describing visual auras... etc. Migraine has been my life, regrettably. But this is more, this is different. It is so brutal and violent. What is o2 ? (oxygen?) If I simply ask my GP for a referral, he will say no. GPs don't like referring patients to anyone. |
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Title: Re: Hello... first time here Post by barry_sword on Sep 16th, 2007, 2:50pm on 09/16/07 at 14:29:31, waterblue wrote:
Yes it is oxygen. My GP here in Canada had no problem at all doing a referral to a neuro, I guess I was very lucky that way. I hope you find something soon that helps. Barry |
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Title: Re: Hello... first time here Post by ski2k on Sep 16th, 2007, 2:59pm Welcome!! Sorry you had to find us. Yes... O2 is referring to oxygen. Breathing O2 through a mask at the correct flow rate has helped a lot of us out. It's great for Cluster Headaches, and even a few migraine sufferers (from what I've read) have had it help. Check out the Oxygen info link on the left. It may help with this "new" headache you're getting, as well as the migraines you already get. If you talk to your doctor about this and determine that it IS cluster headaches, there's no reason you couldn't get a referral. These (CH) are usually out of the range of experience for most docs. Even a lot of neurologists have little to no experience with them! Good luck with your treatments and diagnosis. We really DO understand what it's like here, and can relate. Feel free to use all the info and support you can get here. Pain free wishes, and sorry about your headaches, Adam If you DO get diagnosed with CH, I would try O2 as your first line of defense against a headache. It's worked wonders for me, and a lot of us here! |
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Title: Re: Hello... first time here Post by Bob_Johnson on Sep 16th, 2007, 3:47pm MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....") HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended. ===== http://www.plainboard.com/ch/chtherapy.pdf Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002) ============ "Pain vs. Suffering--research support", a message posted on 1/7/07. SSRIs used to treat depression have gained a good track record but docs have been long aware of relapses when the med is stopped. Research has lead to a recommendation that the med be continued for up to 18-months after the depression has lifted because this reduces the rate of relapse. Parallel research revealed that this longer use of the meds allows our brain to "rewire" itself leading to better long term outcomes. The article (available on the OUCH site, last line) "Pain vs. Suffering" is based on cognitive therapy. These forms of counseling/psychotherapy have been strongly supported by good research. Now some evidence is appearing that these therapies act like the SSRIs to stimulate our brains to "rewire", affording protection against strong anxiety conditions. Bottom line: looks like it may be possible to alter brain functioning to build in a permanent reduction of the anxiety which besets many folks with CH. While the gods may not have made a final pronouncement yet, experience with cognitive therapy, so far, really supports its use to treat anxiety & depression. While using "pain vs. suffering" takes time, commitment, and practice, it beats endless use of benzos, etc. "“My brain is generating another obsessive thought. Don’t I know it is just some garbage thrown up by a faulty circuit?” After 10 weeks of mindfulness- based therapy, 12 out of 18 patients improved significantly. Before-and-after brain scans showed that activity in the orbital frontal cortex, the core of the OCD circuit, had fallen dramatically and in exactly the way that drugs effective against OCD affect the brain. Schwartz called it “self-directed neuroplasticity’ concluding that “the mind can change the brain?’ (TIME, 1/29/07. Major article on the human brain.) (OCD is classified as an anxiety disorder.) http://www.ouch-us.org/chgeneral/painvsuffering.htm |
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Title: Re: Hello... first time here Post by Rosybabe on Sep 18th, 2007, 4:34pm Hi Waterblue!! Welcome HOME girl!! you are not alone and yes we DO understand pain and a lot of us have gone throught extreme measures to mask the pain..I also have migraines when I am out of cycle... It is great that you can count on your husband, but now you also have us here to listen and we BELIEVE you. Please try to get a prescription for Oxygen, it is a very good abortive and stop taking paracetamol, it does not work!! Red Bull and melatonin for the night hits are good also... Stay in touch and let us know how you are doing ok? Wishing you lots and lots of pain free time!! Hugs Rosy. |
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Title: Re: Hello... first time here Post by Goudlake on Sep 18th, 2007, 5:10pm Hi and Welcome. I am new to the message boards but not new to the site or to the reason we are all here. Read and believe that we understand and do support. I have learned a great deal from reading the boards, what to try, how to talk to my Dr and my family and that I am not alone during my cycles. Get the O2 - is my first line also and have a home and portable to carry with me. Easy, fast effective and cheap. Best of luck. |
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Title: Re: Hello... first time here Post by RichardN on Sep 19th, 2007, 6:17pm Welcome Home girl, . . . and we're glad you found us, though we all hope it's not CH . . . if it is, you're in the right place. These guys saved my life and gave most of it back to me. When I showed up here (2/02), I was a basket-case . . . having 6-8 attacks per day and sometimes 3-5 at night . . . . always dealing with the very real FEAR of the next one . . . when will it hit?, how bad will it be?, how long will it last?. These guys gave me a "name-for-the-pain" and the info/ammunition to battle our common beast. Please do respond with any information you can re your attacks and any questions you may have. Even if it's not CH, the ha professionals on this board will be able to point you in the right direction . . . . AND, there is an abundance of info available for you to copy and take to your doc (that's how I got my Verapamil and 02 scripts) One of my favorite mottos on this board is, "Nothing works for everyone, but SOMETHING works for everyone" . . . . here, you have a very good chance of finding the "something" that works for you. I'm sure that shortly, Helen or someone else will be along who's VERY familiar with the U.K. medical system and how to navigate same. Be Safe, PFDANs Richard |
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Title: Re: Hello... first time here Post by LeLimey on Sep 20th, 2007, 1:07pm Hello waterblue I'm so sorry you had to come to find us. You're not alone in having multiple headache types so please rest assured on that if nothing else! Under NHS guidelines it states you have the right to see a specialist in your condition. This means you have the RIGHT to see a neurologist and not just any old neuro either. Neurology is a wide field and you need to see a headache specialist neurologist. I'm going to say that again cos it simply can't be stressed enough, YOU NEED AND HAVE THE RIGHT TO SEE A HEADACHE SPECIALIST NEUROLOGIST!!!! If your doctor - and there are some antiquated little aardvarks about - fails to understand that a part of his job is to refer people who he can't treat competantly then you should tell him you will be approaching your PCT as your rights as a patient are being undermined. Believe me, he cannot withold a referral from you. I'm in New York State at the moment and will be until Oct 14th but if you want me to come to the doctor or the PCT with you after that I will. I'm only about an hour away from you, just outside Nottingham. In the meantime, lets try some home remedies that may help until you get to see a specialist. Even if it turns out not to be CH these are things that can't harm you. With over 600 HA types there are many crossover's of symptoms and it DOES take an expert to decide what it is you have and sometimes it's a process of elimination. I'd strongly recommend you keep a HA diary with length of pain, when it occurs, how it feels, rate it on a scale of one to ten - see Kip scale and even what you ate that day/evening. It will all help diagnosis. Anyway, some people find that heat helps sooth the pain, I'm the opposite and find cold helps and heat aggravates me. A hot steamy kitchen for instance is a huge trigger. Get outside into the cold night air, try ice packs ( a bag of frozen peas in a tea towel will work!) on the back of your neck and painful side of your head. If these make it worse go the other way and try a hot shower with the water directed straight onto your face. Strong coffee at the first sign of an attack is a rememdy alot of people swear by. I do for one but I also find red bull (or the cheaper versions like Asdas own for instance) are even better. Caffeine is a vaso constrictor and those high energy drinks have a large dose of both caffeine and taurine which, if I'm going to be technical, is like a massive turbo boost to the caffeine so it really helps! In a CH attack the blood vessels on the affected side of your head can swell by up to 20 x their normal size which is why it hurts so much. The only remedy is to constrict them ASAP hence triptans, Oxygen (another vasoconstrictor at a high flow rate) cold, caffeine and so on. I hope this helps a bit. Knowing you aren't alone is the first and biggest help I know. We will help you fight both the beast and any other bugger that gets in your way and that's a promise! Hang in there, we'll get you through this I promise. Helen |
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