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Title: New to the boards... Post by suds74 on Mar 3rd, 2008, 8:05pm My name is Bill and I am a CH sufferer from Dallas, TX. I first experienced cluster headaches in 2004 or so and they were relatively mild compared to what I am experiencing right now. I hadn't had a cycle since 2004 until about the middle of February 2008, and I am still in this vicious cycle. I went to the doctor when they first started up in mid-February and he gave me some fresh Maxalt, which I thought would work, since they helped me in the past. But not this time - the CH continued, and pretty painful at that. My doc gave me a prescripiton for Amerge and MethylPREDNIsolone on Monday the 25th, and I didnt have another headache until the 30th - which is when the MethylPREDNIsolone was finished. Had two CH on Sunday though, and one this morning - which has left a dull pain all day - the first time that has happened. My symptons are typical of what I have read on the boards so far - excruciating pain behind my left eye (and always the same eye), droopy eyelid, tearing in my left eye, stuffy nose, and did I mention the excruciating pain :) My fiance also tells me that my left ear turns real red right around the time the headaches start...but I have never really noticed this. I am heading to the neurologist on Wednesday for another opinion and we will go from there. Thanks for reading! Bill S. |
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Title: Re: New to the boards... Post by Ray on Mar 3rd, 2008, 8:19pm Dear Bill: Sorry for your pain, but I think you've found the best place to commiserate and to learn. On some of the screens on this website, there are links to the left. One of them is about oxygen use. High flow Oxygen and a NON-rebreather mask (the kind with a bag) is successful in aborting most attacks quickly for about 70% of us. Please read up and consider asking/demanding this. The pred taper is a temporary fix. Usually it is used to allow other medications like, for example, verapamil or lithium to get up to theraputic levels in your bloodstream. The only medications other than predinisolone that you've mentioned are "abortive treatments". Most, but not all, of those who use this class of medications use Imitrex injections because they are quick! Others use energy drinks, such as redbull, that contain caffeine and taurene, at the first hint of an attack. Many are successful to abort an attack that way. Please feel free to read, read, read, and ask questions. Wishing you well, Ray |
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Title: Re: New to the boards... Post by brewcrew on Mar 3rd, 2008, 8:36pm Get a prescription for high-flow oxygen (15+ liters per minute) through a non-rebreather mask as needed for cluster headache. (Take this wording to your doc.) |
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Title: Re: New to the boards... Post by coach_bill on Mar 3rd, 2008, 8:36pm hello there, im bill too. sorry to hear your back in the ring again but you found the right place, yep all those things sound common to clusters so your not alone, stick around and read, also share your thoughts and exp. you will see many of us go thourgh the same things. feel better soon.. coach bill |
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Title: Re: New to the boards... Post by suds74 on Mar 3rd, 2008, 8:36pm Thanks for the info Ray! I plan on spending alot of time on this site, and I appreciate your help! I am sure I will have a ton of questions. I am getting married this week, and expecting a baby in July - a little out of order I know :) but I want to get this under control as much as possible so I can be a good husband and a good father. Thanks, Bill |
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Title: Re: New to the boards... Post by DennisM1045 on Mar 3rd, 2008, 8:44pm Welcome to your new home! Don't worry. You will find what works for you with some experiementation. Many people find a way to fight the beast and have a life too. You just learn to live between the hits. Here are two documents that lay out the latest in treatments: http://www.plainboard.com/ch/chtherapy.pdf http://www.efns.org/files/guideline_49.pdf Also check out the O2 info at OUCH-US here: http://www.ouch-us.org/medications/oxygen/o2links.htm Oxygen has changed my life. I don't go anywhere without it. It lets me kill the pain quickly and move on with my life. Read up and ask a lot of questions... -Dennis- |
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Title: Re: New to the boards... Post by suds74 on Mar 3rd, 2008, 8:44pm It is nice to see a community willing to help one another, and I thank everyone for their help and support! Looks like Oxygen is going to be high on my list at my next dr. visit :) ~Bill |
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Title: Re: New to the boards... Post by brewcrew on Mar 3rd, 2008, 8:47pm Let's get one thing straight, Bill - you can be a clusterhead and a good husband and good father all at the same time. In addition to the abortive treatments, you need to talk to your doc about longer-term preventative treatments. A number of folks here use verapamil, lithium, or a combination of the two. I use lithium myself, and I also use methysergide (Sansert). Some use Topomax. Read (and print) the info on the "medical info" link to the upper left. Talk to your doc about all of these preventative therapies. You are amongst people who understand. You didn't ask for this, so you can be the one who decides whether you're going to rule it or it's going to rule you. Another Bill |
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Title: Re: New to the boards... Post by PollyPocket on Mar 3rd, 2008, 8:59pm Hi Bill, welcome. One comment that really should be burned on your brain is that you need to learn to live between the hits. CH sux big time, but it doesn't have to rule your life. Congrats on the upcoming nuptuals! Bring the bride and mom-to-be here so we can get to know her, and she can get the support she will need to help you all deal with this. Our supporters here are amazing people. o2 is a godsend and for me kicked the beast back in a little under 10 mins. (Wish I'd have done it years ago!). Verapamil was a great preventative too, knockng the hits down a bit and shortened the cycle. Pred was the same for me as you: worked till it was gone then WHAM. Definitely ask your doc about different preventatives to try. Also, in a pinch, some of us do well with ice packs, or heat applied directly to the affected side or high test caffeine drinks like redbull slammed at the onset. (personally I think redbull tastes like butt but others stomach it quite well) You've come to the right place, both you and your honey, to find support and understanding and a lot of knowledge from years of dealing with CH. Again, welcome Jen (who is not another Bill) |
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Title: Re: New to the boards... Post by GrandPotentate on Mar 3rd, 2008, 9:20pm I'm glad you found us, sorry you had to come looking. Get yourself a good long list of questions and work it out with the doctor. He needs to eliminate a couple other things. Your job is to convey the urgency. I stayed away from oxygen for quite awhile because it sounded like a bother. Boy was that stupid! A doc got me a prescription, and I was astonished at the effectiveness for me (your mileage may vary) Hope you find some good relief as well. |
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Title: Re: New to the boards... Post by suds74 on Mar 3rd, 2008, 9:32pm Just wondering if you guys are "drained physically" after some of your attacks? A few of the bad ones lately have left me extremely tired, and the lack of sleep overall doesn't help either! Thanks again to everyone for their help! ~Bill |
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Title: Re: New to the boards... Post by Superdave on Mar 3rd, 2008, 9:35pm Welcome Bill, I'm just a baby on this site been here only a month or so. Brew crew and the others have really helped get my *&(^ in order. I've been to many Neuroligist and Doctors before I was properly diagnosed. Just make sure they listen to what you have to say, or find another one. Its a great place to be in a bad time! 8) |
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Title: Re: New to the boards... Post by Linda_Howell on Mar 3rd, 2008, 9:41pm Hey Bill, Check out the OUCH board...our next convention is in Dallas. Upcoming Events What Where When Contact 9th Annual OUCH Convention Dallas, Texas July 11-13, 2008 convention@ouch-us.org Since you live there you have no excuse to come and meet the mopst wonderful people in the world who will sit you down and explain anything and everything you ask. O.K.?> Linda |
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Title: Re: New to the boards... Post by George_J on Mar 3rd, 2008, 9:49pm on 03/03/08 at 21:32:52, suds74 wrote:
The bad ones that aren't aborted--yes. All of them. The thing takes a lot out of a person. Glad to meet you, aside from the fact that it's because of....you know what. Let us know how your doctor responds to your request for oxygen. Some doctors display an almost irrational unwillingness to prescribe it. Best wishes, George |
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Title: Re: New to the boards... Post by Superdave on Mar 3rd, 2008, 10:33pm Yes Bill, bad hits suck the life right out of me Thats why I try to eat healthy foods drink a lot of water and stay in shape |
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Title: Re: New to the boards... Post by darknight on Mar 4th, 2008, 5:27am Hi Bill, As you can see everyone is here to help as best they can by drawing on there own experiences. I myself have just recently started with Oxygen thanks to this site and it works wonders and helped me gain control of my life again but not everyone will agree but would advise you to at least try it first!! Hope you get control and good luck with your wedding and soon to be little one!! ;) |
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Title: Re: New to the boards... Post by suds74 on Mar 4th, 2008, 3:56pm on 03/03/08 at 21:41:47, Linda_Howell wrote:
Sounds great - would love to meet everyone there! ~Bill |
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Title: Re: New to the boards... Post by suds74 on Mar 4th, 2008, 3:57pm on 03/03/08 at 21:49:42, George_J wrote:
Thanks for the info...I am just amazed at how tired I am after a CH. I unfortunately had one during a lunch meeting today, and had to step out for a while because of the pain, and now I am drained! Guess I need a Red Bull! :) ~Bill |
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Title: Re: New to the boards... Post by suds74 on Mar 4th, 2008, 3:59pm on 03/03/08 at 22:33:37, Superdave wrote:
I drink alot of water each day, and when I don't have a CH, I ride my NordicTrack bike each night for about 20 minutes...but it hasn't happened much lately due to the frequency of headaches...but I plan on jumping on it again real soon :) Thanks, Bill |
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Title: Re: New to the boards... Post by brewcrew on Mar 4th, 2008, 4:12pm Have you ever had a sleep study done? I had one done in 2001, was diagnosed with severe sleep apnea, and have been on CPAP therapy ever since. It hasn't affected the CH, but it sure is nice being well rested when you have to battle the beast. |
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Title: Re: New to the boards... Post by RichardN on Mar 4th, 2008, 5:21pm Hi and Welcome Another vote for 02 here. Make SURE you copy the 02 info and take it with you to your doc. Many docs are reluctant to prescribe oxygen and need to be convinced. Also, don't be dissuaded because "your insurance doesn't cover it". Even if your ins co. won't pay, 02 is CHEAP even if you have to pay cash. It was Verapamil that worked for me as preventative. Start a headache journal today. Note the time, duration, pain level (use "the kip scale" . . .link on left), and take the journal and a copy of the Kip scale with you when you next see your doc. One of my favorite motto's on this board is, "Nothing works for everyone, but SOMETHING works for everyone" . . . and here you have a very good chance of finding the "something" that works for you. Be Safe, PFDANs Richard |
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Title: Re: New to the boards... Post by suds74 on Mar 4th, 2008, 5:23pm on 03/04/08 at 17:21:13, RichardN wrote:
I do have a headache spreadsheet that goes back to my first headache in mid-February - and I plan on sharing this with the doc tomorrow, as well as insisting on some O2 as well :) Thanks, Bill |
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Title: Re: New to the boards... Post by suds74 on Mar 4th, 2008, 8:56pm Several of you have mentioned preventative drugs - how long do you guys take those? Is that a permanent thing? Thx, Bill |
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Title: Re: New to the boards... Post by Ray on Mar 4th, 2008, 9:11pm I don't think there's a universal "yes or no" answer to that question. I'm chronic, so if there were a drug cocktail that would work for me, I would be on them year round. I'll defer to other episodic clusterheads to answer you. Ray |
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Title: Re: New to the boards... Post by BarbaraD on Mar 5th, 2008, 7:01am You might try melatonin at night to get the sleep you need. It helps a lot of us get thru the night hits. I've been on it for years and swear by it. I take 12-15mg before bed and very seldom have a night hit. And yes, the exhaustion goes with the hits. That's normal (if anything is normal with these darn things). Keep some Red Bull handy and chug-a-lug a can at the first sign of a headache. It will sometimes keep it away - till the next one. Then repeat it.... Coffee is also good. I bounce off walls a lot, but it beats the pain of CH. ;) Get your bride on this site and let her meet some of the other supporters. They're great people. And plan on coming to convention. You'll love us all I promise. No one ever wants to go home. Welcome to Clusterville. Hugs BD |
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Title: Re: New to the boards... Post by Stinger on Mar 5th, 2008, 1:56pm I've taken the pred and verapamil every cycle for the past 10 years and this is really the first time they have helped me. Although, it may well be the Red Bull and Melatonin that are helping me for all I know. I didn't know about them in past cycles. I continue to get hit this cycle with 2-3 headaches a day, mostly in the evening, but I slam the bull as soon as it hits and take 12 grams of Melatonin each night and they seem to go away quicker and they don't go full scale tens at all. I am a lucky man this time around. |
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Title: Re: New to the boards... Post by Ray on Mar 5th, 2008, 5:55pm Quote:
I'm sure that's a typo, it must be 12 milligrams... Ray |
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Title: Re: New to the boards... Post by RichardN on Mar 5th, 2008, 7:10pm Hi again Bill Were you successful in obtaining your script for 02? Any other recommended meds or therapies from your doc? Let us know, Richard |
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Title: Re: New to the boards... Post by debOUCH on Mar 5th, 2008, 7:22pm My name is Deb, and i live on Long Island. For 35 days now i have had the worst pain known to man!!! first doctor treated as sinus infection, with a few doses of prednisone..............and yes, as soon as prednisone done, back he came!!! scan of sinus', and loads of antibiotics.............i started watching myself during an attack, (the big ones are @ night, either as soon as i lie down, or few hours after), and doing my own research....(alot of this site!!! tks!! :-*......also my dad started these 24 yrs ago when he was my age!!!! Mine radiates from the top of head, including eye, forhead, ear, cheek, teeth, jaw.......with dull aching all day...herbal heat packs help but basically i pace and cry........i even went to the dentist to see if i had a toothache!!!my big ones are lasting 2 hrs, with mini ones during day.............new doc today, all my symptoms logged, and she agreed with me..........have to go for a CT with contrast to rule out a mass....NOT WHAT I WANTED TO HEAR!! had bloodwork, and she put me on pred for 20 days...........however, once that is done if the cycle not gone, what to do!!!!!!!!! :( Tho my friends and family are a big support system for me, they just dont get this, and it is so frustrating, i find i cry alot.........no one can fully understand the pain unless they are experiencing it themselves..............i just am so afraid to go to sleep at night...........and i am a Tasting Room Mgr @ a vineyard and wine triggers it, a sip and i get one!!!! how unfair is that!!! >:( this site helped me so much and i found great comfort as well as information when reading....................................thanks for listening deb :'( |
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Title: Re: New to the boards... Post by Superdave on Mar 5th, 2008, 7:58pm Hi Deb welcome, Sorry, you need this place but wer'e always happy to help a new sister in pain I sent you a pm to help you get started A great place to be in a bad time 8) |
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Title: Re: New to the boards... Post by brewcrew on Mar 5th, 2008, 8:17pm Don't freak out at the CT scan. Any good doctor will want to rule out the worst first. Take the cluster quiz at the left of your screen. |
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Title: Re: New to the boards... Post by suds74 on Mar 8th, 2008, 1:07pm I was so flustered by having such a bad headache while at the doctor I failed to ask about the O2. But I did get a prescription for Topamax and one of the nasal sprays whose name escapes me right now. I started the Topamax on Wednesday and I can't say I have seen a difference in reducing the number of headaches or possible headaches yet...anyone have any experience with regards to how long it might take for Topamax to "kick in" and become an effective preventative medication? I can say though that the nasal spray I am using has been AWESOME as an abortive treatment. Stops any CH within 10-15 minutes. I will put the name of the nasal spreay up here when it comes to mind since I am at work right now :) and have the sprays at home... P.S. I am now a married man, and hope to have the wife on here soon! Thanks to all for the help! BILL |
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Title: Re: New to the boards... Post by brewcrew on Mar 8th, 2008, 1:40pm Newlywed hint #1: Do not refer to your bride as "the wife." It's too much like "the lamp," "the dog," or "the car." There is nothing good down that road. If you want to put a twinkle in her eye for the rest of her life, call her "my bride." Also, I would call your doc's office back and tell them exactly what you stated here - you were in the throes of pain and forgot to ask for a Rx for O2. Be firm but diplomatic. |
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Title: Re: New to the boards... Post by suds74 on Mar 8th, 2008, 7:03pm brewcrew - thanks for the hints - my bride will be appreciative, I am sure :) Also - as an FYI the nasal spray I mentioned earlier is Zomig - it has been an awesome abortive so far...at least until I ask the doc about O2 at my next appt...but so far no complaints at all about the Zomig |
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Title: Re: New to the boards... Post by suds74 on Mar 8th, 2008, 7:06pm Anyone else out there taking Topamax? I have been reading a bunch of threads on Topamax and noticed the doseages were much higher than mine..I am only taking 25mg twice a day...which seems low compared to many others... Maybe that is why it hasn't been the "home run" after three days that I expected... Thanks, Bill |
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Title: Re: New to the boards... Post by beachmusic on Mar 8th, 2008, 7:32pm I started out on 25mg. Topamax and was told to increase it 25 mg. every 3 days as needed. Maximum dose being 200 mg per day until told other wise.... Well that was 5 1/2 weeks ago and I am presently taking 150 mg every evening. As you can see I titrated up pretty quickly because I was anxious for some results. They also added depakote on the third week. I am brain dead and I have lost 20 lbs, dizzy and weak so if you have a job that requires mental sharpness I would forget about it. My hits have gone from 4 times a day to 1 or 2 and sometimes every other day. They are also shorter in duration and pain level. I usually don't get hit in the night anymore but if I dare to nap I am doomed. I also now have a non stop dull headache all day. I have a pathetic doctor and until I can get that rectified I have to stick with this program. I have to say I am better but would certainly prefer pain free! Good luck to you!!! |
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