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Title: My husband's a Newly Confirmed CH sufferer... Post by LMVK on Jun 14th, 2003, 9:09pm Hi there! My husband's been dealing with CHs for the past two months. We've been running the gammut with medications. He finally saw a neurologist last week who confirmed that he is definitely suffering from Cluster Headaches and not Migraines as first diagnosed by our family doctor. Thank God that I found this website. You guys really helped us to determine the difference and got us on the right track (something that the doctor couldn't do). The neurologist started him on Verapamil ER @ 120mg (one pill at night). Also, Imitrex pills as needed. Any other suggestions would be a great help. Thanks for saving our lives. Linda |
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Title: Re: My husband's a Newly Confirmed CH sufferer... Post by Charlie on Jun 15th, 2003, 3:52am You're welcome and stick around. You'll find more things to help you cope with this horror. Here are two things that every clusterhead should be aware of. The first is a letter from Simon Bower that we encourge you to copy for you friends. It will explain to them that this isn't a run of the mill thing: http://www.ouch-uk.org/ch/note_colleagues.cfm This is a techinque that worked for me: 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: My husband's a Newly Confirmed CH sufferer... Post by cbolony on Jun 15th, 2003, 4:47am Quote:
LMVK i'am glad your husband is getting help.The only think is the verapamil he is taking is a low dose.If he is still getting CH called the neuro and see if could up the dose.Most of us take 300 mgs and up.I take 240mgs 2x aday.The imitrex pill takes 30-40 mins to work.A lot of clusterheads like the imitrex injections 5-10 to work or if you don't like needles there is the imitrex nasal spray that takes about 15 mins to work.And there is Oxygen that a lot of people here use. Here is a link to the 02 http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm |
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Title: Re: My husband's a Newly Confirmed CH sufferer... Post by jminmilwaukee on Jun 15th, 2003, 8:03am Yes indeed, O2 helps most (not all of the time). The trick is to get a rebreather, crank it up at the biggining of a CH and HUFF the STUFF. I have found that letting some O2 "leak" into my affected eye (from the corner of the mask) is very sothing also. Another BIGGY, and I'm sure you are aware by now, is to WATCH OUT FOR TRIGGERS. Alchohol---MAJOR NO NO. I found other foods such as Soy Sauce, cheese and such hammered me. Keep a diary and rate the headaches using the Kipp scale. Sometimes you can tie them to certain environments (smoky bar) or foods as far a severity goes. He will get them regardless but there are ways to make them more bearable. LOTS of water tend to ease them up also. Ice can help (frozen veggies, ice pack, etc) as you can numb the affected area. Does'nt kill them but can help. Sometimes caffine helps me but has hindered others. Bottom line, no cure (yet) but you are in the right place to find good coping methods. There is more been there, tried that experience here than in all the medical books combined. Good luck and feel free to IM me if you have any questions you are afraid to ask here. Lately some people here have been getting a bit nasty about repeat questions and what they are calling lurkers. Not to offend anyone on the board but we were all new to this at one time. Jmin |
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Title: Re: My husband's a Newly Confirmed CH sufferer... Post by Bob_Johnson on Jun 15th, 2003, 8:06am Suggest you buy one of these books. They will give you more information, more quickly. The more expensive of the two is written for physicians and it will give you a tool to negiotiate with your doctor about treatments, dosing, etc. The advantage of books is that the information is organized in a more easily useful way. ==================== MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. 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. |
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Title: Re: My husband's a Newly Confirmed CH sufferer... Post by BlackDog on Jun 15th, 2003, 7:34pm Linda, your husband is fortunate to have someone who understands. My advice: Just (try) and understand. And educate yourself the best you can and support him through this. AND read all these posts and the archives...LOTS of info. that will benefit both your lives! Promise. :D Darren |
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Title: Re: My husband's a Newly Confirmed CH sufferer... Post by LMVK on Jun 15th, 2003, 9:24pm Hello all! Thanks to everyone for the words of encouragement and great advice. I felt so good when I woke up this morning and read everyone's wonderful comments. You guys are great! My Barry had his MRI and MRA yesterday afternoon. His next doctor's appt is on Wed so we shall see what we shall see. He is going to take cbolony's advice and see about upping the Verapamil dosage. His neurologist wanted to start him out on the lowest dosage first. Barry had a bad experience when our family dr started him on 100mg of amitrip. (the first drug treatment). My boy couldn't keep a level thought in his head, couldn't walk a straight line without teetering, couldn't even concentrate long enought to fill out a check. The neurologist also mentioned the O2 treatment as a possibility. Sounds like we are heading in the right direction. Hey, whatever it takes, right?! He had another CH again today. I feel so damn useless when he's going through it, kind of like a milk bucket under a bull. The Imitrex helped to get it under control. But he still has "residual" pain. He says it feels almost like a bruise afterwards. Ah well... Take care everyone. Thanks again guys. Linda :-* |
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Title: Re: My husband's a Newly Confirmed CH sufferer... Post by jminmilwaukee on Jun 16th, 2003, 6:40am GET THE 02!!!!!!! Again, if huffed at the onset, it can abort the attack!!!! Carefull with the verap btw, I had serious adverse reactions to higher doses including dizziness and rebound after rebound headache. Worht a try though as it does offer relief to some. Good Luck! |
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Title: Re: My husband's a Newly Confirmed CH sufferer... Post by MarkHW on Jun 18th, 2003, 10:09am Welcome.... Another thing to ask is about getting a supply of prednasone in the house. If your husband is episodic (has cycles of cluster vs. chronic - all the time) a round of prednasone may get him through a cycle. I'm chronic and my Dr. keeps me in a supply of prednasone so I can do a week of it when it gets too bad. Mark |
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Title: Re: My husband's a Newly Confirmed CH sufferer... Post by Backstage_Pro on Jun 24th, 2003, 5:35pm O2 is a savior!!! Only wish I could carry it with me everywhere I went. Ya never know when the pain is going to come. Best of luck to your husband ! |
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Title: Re: My husband's a Newly Confirmed CH sufferer... Post by BlackDog on Jun 24th, 2003, 11:09pm on 06/24/03 at 17:35:28, Backstage_Pro wrote:
Backstage, You can. I have a tank that fits in my backpack. It will get me through one attack at 8 lpm (my higest regulator setting). I now carry a computer bag for work and a backpack with O2, regulator and mask. Since I have to carry the backpack around anyway, it gives me a place put my other meds, so now I know I can make it several hours away from the house. If you have an Rx for 02 and your 02 service wont provide you a portable tank, tell your doctor that you need to be mobil and have a tank available at all times. He should Rx a portable system for you. I would not be leaving my house for weeks yet, if not for portable 02. Good luck. Darren |
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