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Topic: Meds Dilemma (Read 495 times) |
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wantmorepfds
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Meds Dilemma
« on: Nov 26th, 2006, 11:35pm » |
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About a year ago I became a clusterhead...and i'm guessing the people on this site know the kind of pain and agony we go through. Before they were diagnosed as clusters, my doc tried every migrane med in the book, imitrex, axert, ergotomine (sp?), relpax, injections, sprays...i mean everything. After failing with every medicine he encouraged me to try Topamax. TOPAMAX WAS A GIFT FROM GOD. My headaces virtually went away and most days I don't suffer at all anymore. However, about 2 maybe 3 times a month, I get breakthrough headaches. They are no less severe then before the topamax, they last all day, and are just as dabilitating as before. My dillema is that we have tried upping my topamax, 4 times, which has done nothing, and I don't know where to go from here. Its obvious that none of the hedache meds work, so should I suck it up, suffer those 2 or 3 days a month and be thankful its not 15-20, or should I try to do something about it. I do not want to go on another preventative, because the topamax was adjustment enough, so I'm tempted to ask my doctor for some plain old pain killers. Does anyone have any suggestions on what I should do, or how I should handle this, becaue I'm scared that if I start taking narcotics its bad, but on the other hand I fell like nobody should have to suffer. 
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George_J
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Re: Meds Dilemma
« Reply #1 on: Nov 26th, 2006, 11:44pm » |
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I seriously doubt that narcotics or synthetic pain medications will do much good. Most people here (including me) never had much luck with them for treating CH.
You don't mention oxygen. I'd encourage you to take a look at the "oxygen info" link to the left of your screen. It works as a powerful, safe, and effective abortive for many of us. It has to be properly administered, though--10-15 lpm with a NON-rebreather mask--in order to be effective.
If you're only getting hit infrequently, with luck, you may find that it is just the ticket for you.
Others will be along with more specific advice, I'm sure.
Best wishes,
George
(Edited for spelling.)
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| « Last Edit: Nov 26th, 2006, 11:45pm by George_J » |
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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UN solved
Guest
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Doesn't sound like you have cluster headaches. Have you taken the 'cluster quiz' ?
PF Wishes
UNsolved
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wantmorepfds
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Re: Meds Dilemma
« Reply #3 on: Nov 27th, 2006, 8:41am » |
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I disscussed with my neurologist that the breakthrough headaches were longer in duration, but based on the symptoms he was hesitant to diagnose them as migraines and assured me that they were break through clusters.
Even with your question of whether or not they are clusters, the fact is that these things ruin my day and cause vast amount of pain. Higer dosed-Narcotic pain medicines were the only thing that did work at the before I started the topamax, but it was obviously uncovential to have me on a daily reigime of demerol because of the addiction and tolerance factor.
I am calling today about the oxygen, because that is one thing I havent tried, and I am hoping it will work, but with my luck, I can't be too optimistic.
Thanks for the advice!
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stargirl50
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Re: Meds Dilemma
« Reply #4 on: Nov 30th, 2006, 7:24pm » |
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My situation sounds kind of similar to yours-- I had been taking Topamax for about a year and had not had a SINGLE headache. Then last spring I did get one or two "breakthrough" headaches, as you called them. They didn't come in clusters but they definitely felt the same.
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| « Last Edit: Nov 30th, 2006, 7:25pm by stargirl50 » |
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fjgcpa
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Re: Meds Dilemma
« Reply #5 on: Dec 3rd, 2006, 8:14pm » |
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Although I cannot respond to the use of Oxogen since I have not tried it yet, it is nice to hear some one has been using Tompamax for over a year and had some success.
I am just getting started using it and from from reading all the notes on the message board all I have seen is negative comments about Topamax.
As bad as it sounds, in my present condition, If I could get my CH down to one day a month my life would be completely different.
Out of curosity what is your dosage? I am hoping that I do not have to go too high to achieve good results. I have been working with a General Practitioner since I have not been able to find a good Neurologist in the Orlando Area that has any headache patients or if they do, one who is taking on new patients. As such we are going to try increasing the dosage gradually to see if it is effective.
Any help would be useful
thanks
Frank
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stargirl50
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Re: Meds Dilemma
« Reply #6 on: Dec 3rd, 2006, 11:27pm » |
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Well, my neurologist pretty much told me to base my dose on whats going on with my headaches. So right now I'm at the end of a cluster and I'm taking a lot (for me)-- 75 mg in the morning, 75 mg at night. (I dont know if this matters but I'm a 130 lb girl.) So anyways, I only take that much when I'm trying to end a cycle. When I was taking it for longer periods of time, my "maintenance dose" was 25 mg in the morning, 50 mg at night-- and thats what kept me headache free for over a year. However, when I'm in the middle of a cluster, that's not enough to break the cycle.
There are definitely a lot of negative comments around here about Topamax and I'm not sure why. All I can say is try to ramp the dose up slowly-- it'll minimize your side effects. (I increase the dose 25 mg/week and have never had any big problems.) Be sure to drink a lot of water (just carry a water bottle around with you all the time) to minimize your risk of kidney stones and stick with it through the first few weeks-- that's when the tingly fingers, toes, tongue and cognitive side effects are the worst. After that, hopefully itll be smooth sailing. GOOD LUCK!
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FramCire
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Re: Meds Dilemma
« Reply #7 on: Dec 4th, 2006, 12:59am » |
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Assuming your doctor is right and it is clusters. It is surprising you had no success with triptans and ergotamine. I know it sounds weird but AFTER O2, you might want to try Zyprexa. Some use 2.5 and others 5mg. If it only a day here and there, there should be little to no side effects issues and it has worked for SOME here.
Also, you can try ice packs and cold showers and many other tops in the first post in this forum.
Keep us up to date on what works.
To PF days ahead.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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Ozark_E
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Re: Meds Dilemma
« Reply #8 on: Dec 7th, 2006, 11:10am » |
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I'm glad to hear that others are having some success with Topamax. My experience has been good as well. After my 3 week taper of Prednisone at the begining of my cycle, the CH came right back, so I quickly ramped up to 200mg total per day of Topamax, and that kept CH away on all days except a few days of strenuous exercise. Now that cycle should be over, I am quickly tapering off to see if the cycle is actually over. It coast seems to be clear, but not sure 100%.
As far as your "breakthroghs" go, o2 is definitely a great defense. Another is imitrex injections. Stops 'em in their tracks for many of us. Third, are these "breakthroughs" completely random? Are you paying close attention to possible triggers: sugars, cheese, coffee, chocolate, meat, dehydration, etc? Sugars can include any big swing in blood sugar for me. I had a big plate of leftover mashed potatos after thanksgiving, and ...bam ... on to the o2 tank. Anyway...good luck.
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wichita_pounder
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Re: Meds Dilemma
« Reply #9 on: Dec 11th, 2006, 2:43pm » |
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I am new to this site and my wife and I were thankful to find it and know there is some support out there. I am 47 and suffered for twenty years until about the end of 1999, during that time the Dr.'s tried most everything. Cafergot, Inderol, Midrin etc. There was very little relief until finally Imitrex came out. Then I had an accident at work and it kicked off a major cycle that the Dr's said they couldn't handle anymore and encouraged me to find alternatives which I found a Chiropracter that believed mine had to do with an injury I had at about 19, and how the ribs healed that attached to my spine and you could see evidence on the xrays so did lots of meds, accupuncture and adjustments. They finally stopped and I was pf and they were gone til November of this year. This is the normal time of year for them to start. Am pursuing those types of help again now and am using Imitrex but we dont have the drug coverage anymore so I am getting the generic Imitrex pills from Canada they are so much cheaper. Injections work best but most costly and having rebound isn't fun. They have had me on Topamax for over a month but am not sure it is helping also getting it generic from Canada. I am also using Stadol nasal spray which I was on years ago to help control pain. I am very intriqued about the oxygen and printed some info for my Dr. also my sleep patterns are wrecked and wondered about the melatonin, how long before it works? and also Verapamil, thats one I did not know anything about. I just hate using the amount of Imitex that it takes to maintain. I have barely been able to work the past month.
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wichita_pounder
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Re: Meds Dilemma
« Reply #10 on: Dec 11th, 2006, 2:52pm » |
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Also have never tried prednisone or Lidocaine nasal spray, any advice on that as well. Forgot to add those to my last post. I hate to know I have so much company but its good to know I am not alone with the pounding. Its just great to see so many different ways people are having some success and for the info to be available.
Thanks to all who have shared.
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vietvet2tours
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Re: Meds Dilemma
« Reply #11 on: Dec 11th, 2006, 3:02pm » |
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Just beg borrow or steal a tank.Oxygen is first and foremost against ch
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Ozark_E
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Re: Meds Dilemma
« Reply #12 on: Dec 12th, 2006, 5:38pm » |
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Agreed, Oxygen is best, as it is just pure o2. But from my experience, I would suggest that you not judge the effectiveness of Topamax until you are at 200mg per day. That was the magic dose for me. It worked, just like prednisone as far as keeping CH away, but with much less side effects then prednisone.
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Karla
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Re: Meds Dilemma
« Reply #13 on: Dec 12th, 2006, 6:00pm » |
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I was on a dose of 200mg for a long time which should of helped me but did nothing for my ch. I was upped to 600mg by a ha specialist and still nothing. Looks like it will help a few people and is worth trying but for the majority it just doesn't help.
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Karla
suffer chronic ch
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Proud Mom of Chris USMC Semper Fi
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