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Topic: How long would you try a med? (Read 364 times) |
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HeadhurtinMama
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How long would you try a med?
« on: Oct 26th, 2006, 12:45pm » |
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How long would you stay on a med and keep increasing the dose to see if you are going to respond before telling the doc you want off that ride? I have been on Topamax for two months now. Thankfully, the stupid seems to be wearing off, and I am up to 150 mgs a day and will be going to 200 mgs tomorrow. I have a followup with her tomorrow. I haven't noticed any improvement at all, in fact my CH have gotten worse, but that could be due to the season and not the Topamax. My only saving grace right this minute is that I am on a pred taper, but now the CH are ramping back up and the pred is tapering down. I just want to find something that works! The verap helps, but lately a good day is only 8-10 hits a day. Sorry for rambling, just trying to get my ducks in a row before my appointment in the morning. They just called me this morning and told me that they had a cancellation. Thanks and PFDAN!
Bridget
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Charlotte
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Re: How long would you try a med?
« Reply #1 on: Oct 26th, 2006, 1:09pm » |
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Good luck, Bridget. You are right that it may be your ch pattern. I always blamed my meds for the back to back hits, until I went med free for several years and they still occurred exactly the same patterns.
I am in the same boat with you trying to figure out how long to try a med.
Do the verap and topamax make the hits more bearable for you? Or does it breakthrough at full pain?
Do you have an abortive?
I apologize because I know you have mentioned these things before, I just can't find them or remember right now..
c
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| « Last Edit: Oct 26th, 2006, 1:15pm by Charlotte » |
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Ozark_E
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Re: How long would you try a med?
« Reply #2 on: Oct 26th, 2006, 2:16pm » |
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HeadHurtinMama,
To be honest, 200mg per day of Topamax seems to be the right dosage for me to keep the CH just barely in check right now. At 150 per day, it wasnt quite enough, and I'd have to pop an Imitrex. I feel like I'm walking a real tight rope. If I eat a trigger food (sugar, preservatives, cheese) a CH will come on. If I take Topamax too late in the morning, I'll get a CH in the evening. But the 100mg in the morning and 100mg in the evening of Topaxax seems to work.
Are you taking 50 in the morning and 100 at night of Topamax? If so, when are you getting hit with CH? If you are getting hit during the day but not in the middle of the night, then it might be related to the relatively lower level of Topamax in your blood. If so, I'd suggest going up to 200mg (100 in morning 100 at night) for just another week and see if it helps at all. If not, then maybe its time to start tapering off of Topamax too. Good luck.
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FramCire
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Re: How long would you try a med?
« Reply #3 on: Oct 26th, 2006, 2:57pm » |
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If you dont have side effects and the dose can be upped, give the new dose time to work. I wont do topo ever again unless it is the last shot BUT if you dont have the problems, give it a shot.
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The mad viking
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Re: How long would you try a med?
« Reply #4 on: Oct 26th, 2006, 3:00pm » |
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Some of the meds we are using for clusterheadaches we have to use up to 12 weeks before we have the right level in the blood and that the meds work optimal
Just my 2 cent worth
Svenn
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HeadhurtinMama
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Re: How long would you try a med?
« Reply #5 on: Oct 26th, 2006, 9:17pm » |
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Well, where I am at right now. The verap is at 480 in the am and 240 in the pm. The increased side effects that came with the last increase on that is really taking it's toll on me and I think it will have to come back down. The fatigue is to a point that is really draining and that much harder to deal with the pain that I am having. And my tummy is in so many knots, I won't even bore you with those details!  I am taking the Topamax 50 in the am and 100 in the pm. I think she has it like that to avoid the worst side effects during the daytime? Kind of odd since I don't get hit at night. But starting tomorrow, I will start 100 twice a day. I also take melatonin, 9 mgs a night to help me sleep. I don't get hits at night, but I have had trouble sleeping since I was a kid, and my sleep study showed that I was severely sleep deprived so this was the recommendation.
As far as abortives, I have o2 which helps. I also have Imitrex injections and nasal sprays. As far as the abortives are concerned, here is my dilema. My CH are not typical in the fact that I present like CPH. My CH last anywhere from 10-40 minutes, but can happen anywhere from 8 to over 20 a day. So, I never really know if I should abort the headache or not! If it only 10 minutes, I can deal with that. Much more than that, not so much, but by then the window is closing on effectiveness. But my insurance only covers 10 total doses of trex a month! Any more than that and my neuro wants me to come to the office and get IV treatments in the office. I understand that she wants to help me, but how in the world can I be a mother to my children and a wife and a functioning member of society when I am stuck in the clinic or worse!
Ok, now I am really rambling... I have just finally felt so good the last few days due to the pred taper. And as I continue on the taper, I am noticing that in the evenings the CH is starting to creep back in and it is really torking my monkey!!!  Oh yes, and as for the topamax making my CH worse, I really don't know. I started developing CH about 12 years ago, and it has just slowly grown and morphed over the years and hasn't stopped yet, so I honestly don't know.
Bridget
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E-Double
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Re: How long would you try a med?
« Reply #6 on: Oct 27th, 2006, 8:45am » |
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Talk to your doctor about possibly switching from the Extended release verapamil which you appear to be on to a Standard or Regular which can be spread out through out the day.
You will have less side effects and you most likely will find some stability in your noggin.
The research suggests this is the specific typo of verapamil that should be used for us.
As for staying on a med......
Svenn is on the ball with his comment regarding how long it takes many of us to reach a therapeutic dose.
The problem with medication and CHer's is the fact that by the time that we reach certain therapeutic doses, many are finsihing up with their cycles anyway.
OR
Because there does not seem to be a positive effect and we are so very desperate, we/our doctors switch or add a medication which then changes the variables.
Who the hell really knows what works because things are really tinkered with so often.
Ya never know nor does the medical world.
We know what aborts! That is clinically proven
Preventatives are more suggested because the longitutdinal that should be used are not conducted.
There are no real long term studies because there are so many episodics and some are bi anually while others just have attacks every few years.
Just my 2 Sheckles
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Ozark_E
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Re: How long would you try a med?
« Reply #7 on: Oct 27th, 2006, 10:37am » |
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I can't really comment on Verapamil because I was only on it for my 1st cycle, which was in 1993, and I cant remember anything about it. But as you said, you are currently taking 50mg of Topamax during the day and 100mg at night, and you are not getting hit at night. I would suggetst going to 100mg at day, and 100mg at night. This is the dosage that has gotten me to PFDAN in general for the past several days(as long as i I stay hydrated and avoid triggers. I will keep repeating this, because I think people don't take this seriously enough). Its the 100mg at a time that gets me there. 50mg doesnt do it. Of course we are all different, but it is worth a try, since you've already put your time in to get upt to 150 mg a day. The best of luck to you. I hope something works.
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HeadhurtinMama
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Re: How long would you try a med?
« Reply #8 on: Oct 27th, 2006, 10:05pm » |
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Hi all, wanted to say thanks if you are still coming back for more ramblings. I had my appointment this morning. I felt that it went well. I did find out that I am one of three clusterhead patients for my neuro, of which I am the most "difficult case". At least she said it with a smile, which means to me that she won't be giving up on me any time soon. Which has happened to me before...
She did switch me over to the standard release verapamil at my request. Still 720 mgs, just spread out more over the day. If I start having any major dizziness, she'll then have me reduce it from there.
She wants me to switch the verapamil for two weeks before adjusting the dose of the topamax at all. So I will stick with the 150 for two weeks. If I see no improvement, then go to 200. Then, I go back in December.
I just wanted to say thanks to everyone who responded. I don't know if I answered all the questions that were asked...
Charlotte, yes the verapamil does help, but it hasn't lately. I don't think that the topamax has done anything.
Ozark, Fram and Svenn, I will be sticking out the Topamax until December and will probably upping the dose to 200 in two weeks. Ozark, I have tried to find my triggers, the only things that I can identify are dehydration and not enough sleep. So, I always drink plenty of fluids and get as much sleep as I can.
Oh yeah, I also asked her if I could try Frova for an abortive. She was a little reluctant due to it not being fast enough for a cluster, and I explained my side of upwards of 20 CH in a day and trex only giving me 3 hours PF, it was worth a try. Now I just have to wait a week to get it filled due to insurance hoops. But if it works, I will ask her to send the letter in so that can get that and trex in the same month to add to my arsenal.
All in all, I had a great day. Thanks for listening, I appreciate your support. 
Bridget
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Here comes the rain again
Falling from the stars
Drenched in my pain again
Becoming who we are
Wake me up when September ends
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