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Title: New to forum Post by TedtheBear on May 12th, 2006, 11:04am Hi, all! My name is Ted & the bear part comes from my "growling" headaches. My grandchildren used to say that I was always "grumpy" & in fact went on to nickname me Dad Grumpy. One day while signing an email that my wife & I had wrtten, I signed it Tedthe Bear & his Honey. It was a hit! OK, about me. I'm 57. It seems that The Beast came back to pay me a visit after a 22 yr. remission, but lately as I'm becoming more educated about these headaches it appears that he never left, but was lurking in the "shadows". When I first experienced these excruciating headaches back in 1968 (while in the military), I was not told that I had "Cluster" headaches. I was simply given Demerul & Librium (sp?). The headaches would come & go through the years, but not with GREAT intensity as those experienced in 68. Then in 2003, it went KA-BOOM! So, horrible, and dibilitating, that I was unable to work-it didn't help matters any that I happen to be a trainer for developmentally (physically & mentally) disabled adults. I had trouble just trying to fix my plate to eat. Well, I had the CAT scans, MIRs, etc. The Neurologist concluded that they were in fact "Cluster headaches". I went through several abortive/prophylactic treatments until the combination of Midrin & Elavil seemed to work. I say seemed because I was pain free for 2 yrs. Started getting the headaches again when an attempt to wean me from the Elavil took place. Went back to full dosage, but it's not taking hold. Now, the Neurologist seems to think that the medication may not have really done anything, rather, that I was near the end of a cycle. So, it's going to be an experiment all over again. GROWL!! |
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Title: Re: New to forum Post by Bob_Johnson on May 12th, 2006, 11:16am Fortunately, many good changes in the last few years. Here are some sources for learning: Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002) http://www.brightok.net/~mnjday/chtherapy.pdf 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. Explore the buttons on the left also. |
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Title: Re: New to forum Post by TedtheBear on May 12th, 2006, 11:20am Thank you! I'll take a look. |
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Title: Re: New to forum Post by Garys_Girl on May 13th, 2006, 1:14pm Hey Ted - glad you found this site. So many people suffering from CH are misdiagnosed for years. Hubby had a rhinoscopy, teeth pulled, &etc. before we found this site (seven years after his cluster cycles started) and diagnosed his condition ourselves. He too had long periods of "remission" that were cycles of shadows of varying strength with attacks from the beast brought on by alcohol (leading us to believe he was allergic to alcohol). There are newer drugs out there that are very effective for some. Unfortunately, it is trial and error working with Doc to find the right mix. What works for some doesn't work for others; what worked for the last cycle may not work for the next cycle. It is a bitch! I know I sound like a broken record (if you find these posts in other threads), but hubby was so helped by these supplements, I can't help myself. It is believed that the seat of the problem with CH is the body's biologic clock (located in the hypothalamus). Magnesium and Calcium are an important part of the biologic clock functions. Talk with Doc about supplements: 600mg - 1200mg of calcium 250mg - 500mg of magnesium The two work together; don't take one without the other. You may also want to discuss Taurine (1000mg) supplements. Taurine helps improve the body's metabolism of magnesium (it also helps reduce cholestorol and improve the LDL/HDL ratio). If you have trouble sleeping because of nighttime hits, consider 5-HTP or Melatonin. The most commonly discussed supplement on this site is Melatonin (a hormone that helps induce sleep). For non-CH people, usual doses are 3mg - 5mg, but most clusterheads find 9mg - 15mg (some even higher) are the "sweet spot." (Hubby was taking 15mg). However, 5-HTP (also known as L-5-HTP) is widely used in Europe; hubby recently made the switch from Melatonin to 5-HTP and find it works much better for him. The pills are usually 100mg; always start with the lower dose and work your way up to what works. Hubby found 200mg is good for him. You may also want to try Kudzu Root (an herbal supplement: see the Medications forum). It works for quite a few people. For hubby it turns the cycle into a shadow fuzz with spikes. He still has a few K8s and K9s (and the occassional K10), but when they happen they are much shorter in duration, and they are much rarer than before he started the Kudzu Root. And if you aren't already familiar with Oxygen as an abortive, PLEASE click on the "oxygen info" link on the left! You need a scrip and a NON-rebreather mask. It's been a life-saver for many. Most importantly, good luck, read, and ask! Wishing you pain free days and nights, Laurie |
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Title: Re: New to forum Post by Garys_Girl on May 13th, 2006, 1:20pm Well - just found out that 5-HTP should not be taken if one is using triptans or anti-depressants because of interactions, so ignore that discussion! Elavil is an anti-depressant, so should not be combined with 5-HTP. That's why it's always best to talk to Doc first.! Laurie |
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Title: Re: New to forum Post by TedtheBear on May 13th, 2006, 4:02pm on 05/13/06 at 13:14:01, Garys_Girl wrote:
Thanks! Yeah, my doctor gave me a prescription so that I could EMERGENCY O2 at the medical facility that I'm with. Check this out: He writes the prescription (very detailed) stating why I'm to have it, flow rate etc. The (stupid) folks at the facility don't get to me for an HOUR after I arrive. The doctor says (under his breath), "If they had just given the damn oxygen when you arrived it would've worked. Just another thing I gotta deal with, that's all. :-/ |
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Title: Re: New to forum Post by Garys_Girl on May 13th, 2006, 4:14pm Ted - I don't know where you are or if you have insurance that will cover it. But you should be able to get oxygen tanks at home. I know around here there are medical supply facilities that both rent and sell the O2 tanks and the regulators. Hubby has purchased an "E" tank and an Oxylite (small and portable), and we rent another "E" tank. He's got a high-flow regulator (goes up to 15 litres per minute, vs. the regular regulator that goes up to 8 litres per minute). The E- tank is also pretty portable if you need it to be. The best would be an "M" tank - if the medical supply doesn't deliver, it can be hauled in and out of a car and up stairs. In a bad night, hubby can go through an entire E tank. He usually doesn't, and the two E tanks and the oxylite (uses it for emergencies at work) generally last about a week - then we take them to the med supply store to get filled. What they actually do is keep the empties, give us full, and we rotate each week. Bummer that you have to get somewhere - and then WAIT! Talk to Doc or insurance and try looking into having 02 available to you at home (or at work). We work in the World Financial Center in NY - even there all we had to do was show them the scrip and they let the O2 tanks into the building. Good luck, Laurie |
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Title: Re: New to forum Post by Kirk on May 13th, 2006, 4:17pm Hi ya Ted. Also with that O2. Make sure that you get a regulator capable of atleast 15 Litres/Min. and a Non-Rebreather mask. Accept no substitutes. If they don't give you a non-rebreather mask rite out of the gate e-mail me and I'll send you a few. [smiley=smokin.gif] |
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Title: Re: New to forum Post by TedtheBear on May 13th, 2006, 4:35pm Wow! You folks are GRRRREAT! It's my lousy medical group. I live in Palmdale/Lancaster, CA. The place sucks! I guess people just won't spill the tea-ya know? Anyway, I'll check with my doctor & insurance about the O2. Sounds great! Ineed to find out how that would work at the job site. This weeks hits: Tues. 3 plus shadows Thurs. 2 no shadows Fri. 2 (1 nighttime) plus shadows Sat. PF sor far |
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Title: Re: New to forum Post by Kirk on May 13th, 2006, 5:07pm Ted: Have you been in contact with the Cal OUCH folks yet? [smiley=smokin.gif] |
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Title: Re: New to forum Post by TedtheBear on May 13th, 2006, 6:39pm No, I haven't. I'll look them up though. Link? Thanks, Ted |
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Title: Re: New to forum Post by nani on May 13th, 2006, 8:13pm on 05/13/06 at 18:39:22, TedtheBear wrote:
http://www.calouch.org/cgi-bin/yabb/YaBB.cgi Welcome, Ted. Those Cal-OUCH folks will get you hooked up. :) |
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Title: Re: New to forum Post by TedtheBear on May 13th, 2006, 8:59pm Thanks, Kirk, nani. I'm in! |
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Title: Re: New to forum Post by Dave on May 21st, 2006, 9:01pm Hi Ted, Thank you for your service, by the way. Question about your 22 year remission period: Any thoughts or theories you could share with us about why that happened and why it came back? Anything that you were doing differently during the remission period vs the active cluster periods? Foods? Activities? Geography? |
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Title: Re: New to forum Post by TedtheBear on May 21st, 2006, 11:41pm Hi, Dave. No, nothing that I could really say was out of the ordinary. My life has been hills & valleys at different times throughout the years, so that rules out stress. Quit smoking 5 yrs. [98] before the cycle came back. Don't see where that could factor in. No! No theories. Totally clueless. The neuro said that while it's rare, it does happen. |
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Title: Re: New to forum Post by rgoldy1121 on May 22nd, 2006, 8:21pm Ted, man, a lifetime of headaches. I hope you find something that works. |
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Title: Re: New to forum Post by TedtheBear on May 22nd, 2006, 10:23pm on 05/22/06 at 20:21:22, rgoldy1121 wrote:
Yeah! I heard that. |
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