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Cluster Headache Help and Support >> Cluster Headache Specific >> Just Diagnosed http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1354500901 Message started by CrystalC on Dec 2nd, 2012 at 9:15pm |
Title: Just Diagnosed Post by CrystalC on Dec 2nd, 2012 at 9:15pm
Hello!!!
I was just diagnosed with Cluster Headaches at a Neurologist yesterday. I had never heard the term "cluster headache" prior to my diagnosis as I always thought that these headaches I have were somehow related to my migraines. I started having migraines about a year and a half ago when I was 31 years old - I get them with aura, and have them very well controlled with Propanolol as a preventative and Imitrex for aborting a migraine if I get one. I don't even get to the point of pain as the triptans work marvelously for me and the beta blocker has the frequency of the migraines WAY down from where it was before I started taking it. About a year ago I started getting headaches with my menstrual cycle that were much different than my normal migraines. There was no nausea, no light sensitivity and it was sharp, stabbing, intense pain and pressure that would not respond to imitrex or anything else I tried to take. It is hands down the worst pain I've ever felt in my life (and I've had babies with no pain medication!) and every time it happens I'm convinced that I'm going to just die. I just pace my house or sit in a rocking chair pushing my palm into my right eye socket as hard as I can. They last anywhere from 30 minutes to 1.5 hours normally, though I've had one or two that have lasted 2 hours. I get them 3-5 days every month from the day before my period starts, and they start between 8-10pm each night. My GP was baffled, and we tried a few different things, but nothing seemed to work. No pain medicine even puts a dent in these headaches and Imitrex pills didn't seem to do anything, either. So i was referred to a neurologist - and he prescribed me Prednisone and Imitrex Injectors (instead of the pills) because he says my digestive system probably comes to a halt when the attack starts, so the pills weren't doing much. I'm supposed to take 10mg each morning starting 2 days before my period for 5 days. He said it's extremely rare for these to follow the menstrual cycle, but there are a few case studies out there for "special" women like me. I would like to try oxygen since that seems to be very effective for other people. The neurologist said we would be able to try that in the future if we can find a supplier near where I live (I'm in the sticks) and my insurance will approve it. He doesn't want to mess with the Propanolol since it works so well for my migraines, but we may switch to Verapamil if the steroids are not effective since that seems to be effective on migraines as well. I'm so excited to perhaps have some HOPE of control over my head! I was starting to lose hope that I'd ever have a normal existence again without these terrible headaches. It has been quite depressing. As sorry as I am that other people suffer from this, it is nice to see these message boards and know that I'm not the only person that suffers from these beasts. Look forward to talking with some of you! -Crystal |
Title: Re: Just Diagnosed Post by AussieBrian on Dec 2nd, 2012 at 10:41pm CrystalC wrote on Dec 2nd, 2012 at 9:15pm:
What a delightful comment. I wonder that we never considered this before. G'day, Crystal, and welcome. |
Title: Re: Just Diagnosed Post by wimsey1 on Dec 3rd, 2012 at 8:11am
Welcome, Crystal. You've made a good start on managing the Beast. Push for O2, even welder's oxygen, with the right mask and regulator-see link at the left. You might also try chugging an energy drink (Red Bull, Monster, Rock Star etc) just as a headache is coming on. While this tends to be most effective coupled with O2 as an abort, some have found it useful by itself. And check out the vitamin D3 regimen on various links. Some have found that to be incredibly helpful. Ask any questions. God bless. lance
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Title: Re: Just Diagnosed Post by CrystalC on Dec 3rd, 2012 at 7:42pm
Wow, thank you for all of the information!
The clusterattack.com/blog link that is posted above tried to install malware though - is there another route to get to that information? I've never tried energy drinks. Is there a brand that is best? There are tons of them out there, and I've never actually had one before. The prednisone didn't seem to help last night - I'm not sure if it's just too low a dose, or if it is just ineffective. I upped it to 20mg this morning, so we'll see how it goes tonight. The Imitrex injections were a godsend though, it has helped more than anything else I've tried thus far! Thanks again for all of the info! |
Title: Re: Just Diagnosed Post by wimsey1 on Dec 4th, 2012 at 7:40am
Crystal, I'm not sure why the doctor is giving you Prednisone at those levels. We usually are given a taper: it starts out really high, around 60-80mg/day, and gradually decreases or tapers until we are done. It buys us time for longer term preventatives to kick in. Most of us find its effectiveness disappearing somewhere around the 10-20mg/day dose.
As for energy drinks, pretty much any will do if they have a combination of Taurine (1000mg) and caffeine (85mg+). It's mostly a matter of which you think tastes best. Blessings. lance |
Title: Re: Just Diagnosed Post by CrystalC on Dec 5th, 2012 at 9:20pm
Well, the steroids are definitely at too low a dose - I didn't notice any difference at all in the pain at onset or ferocity. The imitrex injectors though have been wonderful - they don't abort the headache completely, but they take it down to a 5 or 6 rather than a 9 or 10. I tried downing an energy drink last night before I administered the injection, and it seemed to help a bit as well. Last night was difficult unfortunately - I will occasionally get more than one attack a night, and last night I had two that woke me up in complete agony, I wish that they'd wake me before they weren't already in full swing. I felt like I'd been run over a truck today at work and was in a generally bad mood. Hopefully tonight will be the last night of headaches this month and it won't be as bad as last night.
Slow but steady progress is good, but I am very impatient and motivated to get control over this. I have an appointment with my GP tomorrow, and hopefully she'll know more about the prednisone doseage. I'm also going to ask about verapamil and coming off of the propanolol. I'm willing to have an increase in migraines temporarily to find a good control for both of these types of headaches. I pray we'll be able to find something! One thing I am completely frustrated about....what STARTED these headaches? I was fine before a year ago, hardly ever went to the doctor and was very healthy. I am really wondering what happened in my body to cause all of these problems? My mom has had migraines for 30 years, and that's the only thing I can think of, I mean, was this just lying dormant in me for my whole life? Aggravating. Hope everyone is doing well! |
Title: Re: Just Diagnosed Post by Mike NZ on Dec 6th, 2012 at 12:01am CrystalC wrote on Dec 5th, 2012 at 9:20pm:
In reality it almost doesn't matter what caused them to start. The fact is that they did so what you need to concentrate on is to deal with them as best you can and then to live life between CHs. |
Title: Re: Just Diagnosed Post by Mike Bernardo on Dec 7th, 2012 at 2:40pm
Welcome to the group. As an alternative to a medical supply store for the O2, try a welding supply store. If you live in the "sticks" there may be one near you where can buy/fill a tank.
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