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Topic: Tracking questions - revised for more input (Read 546 times) |
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burnt-toast
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Tracking questions - revised for more input
« on: Apr 11th, 2006, 11:30am » |
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I've seen numerous posts indicating that meds./treatments do not work for some folks. It's not unusual, I've had similar experiences that I track in a log. Out of curiosity...
Do you record/analyze cycles, seasonal issues, medication usage and treatment effectiveness?
In your regular visits with your doctor(s), how do you provide specific information related to changes in your condition and treatments?
Tom
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| « Last Edit: Apr 20th, 2006, 11:51am by burnt-toast » |
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
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Charlotte
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Re: Questions for folks who feel meds. don't work
« Reply #1 on: Apr 11th, 2006, 2:58pm » |
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I haven't saved everything, but I keep track of medication - doses and combinations of, supplements, food, weather, stress, etc. I've logged my history, logged individual cycles, logged individual headaches.
I've had some good doctors who have moved on who helped in the past, before we had triptans.
The beta blockers I tried sometimes caused clusters on the opposite side, including Inderal which I just stopped this week. I had a normal one on the right and a shadow or weaker one in a different stage on the left. They were not in sync. I felt very lopsided. I hope & think that it was temporary.
Also, it seems like any oral medication makes it worse, but that may be a coincidence since these just are sometimes worse.
I'm one that depakote (I think 480 mg twice a day) didn't help much. At the end of the high cycle, it was not worse than usual but it was also not better.
Verapamil caused more headaches, at the end of cycle, one after another, until I stopped.
The beginning of cycles or low cycles, anything helps. At the end of cycles or high cycles, nothing helps and somethings make it worse.
Weather doesn't seem to affect it.
Did I already say, sometimes anything thing by mouth makes it worse - food, vitatmins & supplements, medicine.
I am reading about Kudzu from materials Nani sent me. It sounds promising. I'm doing ok right now so I have some thinking room.
When I was young, I just thought I was crazy. If nothing else, it's a relief to know it's clusters.
Thanks for asking.
Charlotte
p.s. The new doc said I can e-mail him, so I did that after this post. I want to give him a chance.
Also, if you can see by this post what I am doing wrong, please let me know. Thx again.
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| « Last Edit: Apr 11th, 2006, 7:01pm by Charlotte » |
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I Cant Dance
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Re: Questions for folks who feel meds. don't work
« Reply #2 on: Apr 11th, 2006, 9:46pm » |
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Yes, my doc and I both keep track. I have quite the file!
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"I can endure more pain than anyone you've ever met. That's why I can beat anyone I've ever met."
-Steve Prefontaine, "Without Limits"----Yeah Right! "I got yer pain right hiya."
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NotH20
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Re: Questions for folks who feel meds. don't work
« Reply #3 on: Apr 12th, 2006, 1:04pm » |
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Well Charlotte puts my records to shame! LOL 
I keep a headache journel when in cycle and send it to my doc at the end so he can keep it in my HUGE file. We go over meds together which really makes me feel positive about my contribution to hitting the beast back out of cycle for a while. Unfortunately the list of "didn't help" is longer than the list of "helpful meds."
Mia
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Kris_in_SJ
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Re: Questions for folks who feel meds. don't work
« Reply #4 on: Apr 12th, 2006, 6:46pm » |
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Though not as thorough as Charlotte, I keep a headache journal from the start to the finish of a cycle - until I'm totally med-free.
Since my doc insists on seeing me every few weeks while in cycle, my little journal really helps him and me both. This last time, it really helped with determining the best Verapamil dosage for me. In addition, by comparing one journal to the previous one, I'm able to see how my cycles might be changing or "morphing."
My total withdrawal from Verpamil this last cycle (which took 5 months total) is a journal in itself.
I'm a true believer!
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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Icey
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Re: Questions for folks who feel meds. don't work
« Reply #5 on: Apr 13th, 2006, 4:46pm » |
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I don't keep logs on anything  Looking back over the years before I knew it was CH I just sufferd . I had cycles where I tried not to take OTC meds ( that's all I knew at the time ) I thought taking the meds was making this nightmare pain worse . So at the start of the cycle was hard knowing what was on the way , the middle where the night beast visited me I would just .. well you know ! .. n the end I almost loved those shadows knowing it was on the way out . this used to last about 16 weeks ..When I got diagnosed I think over the years Ive tried that many meds , nothing really helps . It's my cycle and it's like just get on with it . Finding this site was my godsend ,knowing I wasn't the only one . I remember my neuro looking me in the eye and saying " Characteristic , you'll have this all your life " I walked away thinkin i'd rather die . That was 17 years ago . We can fight it  So this is my reason for not logging things , for me personaly I know it's not what I eat drink etc . It's part of me
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Icey
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Re: Questions for folks who feel meds. don't work
« Reply #6 on: Apr 13th, 2006, 4:50pm » |
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Kris .. I'm just starting the verapamil for the first time ... took you 5 months to get off them ? *gulps that's promising 
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MJ
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Re: Questions for folks who feel meds. don't work
« Reply #7 on: Apr 13th, 2006, 8:22pm » |
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Used to keep track of everything many many moons ago.
Helped me to give up on meds and doctors. Realizing that neither did anything for my CH.
Over ten years since I have been to a doc or taken presribed meds of any kind for CH.
Then along came clusterbusters and RC seeds.
I kept a diary here got some wonderfull no nonsense input and found some relief.
With the diary and input to analyze, I was able to adjust and correct my treatment as needed untill success was found.
Now allmost 4.5 weeks PF.
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MJ
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Icey
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Re: Questions for folks who feel meds. don't work
« Reply #8 on: Apr 14th, 2006, 2:09pm » |
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So pleased for you MJ ... I was adviced not to try them , so yeah we're not all so fortunate . So pleased for ppl that it's working for tho
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Dragnlance
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Re: Questions for folks who feel meds. don't work
« Reply #9 on: Apr 14th, 2006, 4:33pm » |
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I used to record everything. I say "used to" because I got tired of showing my records to docs, only to have them tell me I must be having migraines, and I could possilby having clusters, even though my symptoms were classic, except for the long durations, my lack of drinking, smoking ect...
I simply quit doing it. I have a very good memory, and I can tell the doc what I think they will accept, and leave it at that.
Now I just accept that the monster and I are intimate beyond words and it will be here till I die...
Dragn
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Icey
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Re: Questions for folks who feel meds. don't work
« Reply #10 on: Apr 15th, 2006, 1:59pm » |
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Yeah i'm the same
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seccsij
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Re: Questions for folks who feel meds. don't work
« Reply #11 on: Apr 15th, 2006, 6:45pm » |
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I hope and pray that those of you with good Drs get PFDANs. As for me, I gave up on Drs about the same time they gave up on me and suspected me of being an addict. (Beacause I told them that Pethedine didn't help) ((It Didn't!))
I know what wont work for me and I keep searching for what will. As with a lot of us CHers, what works this cycle probably wont work next time, but I'll try it first anyway and see what happens.
Recording CH is a great idea and has helped me get to know the beast better.
Good luck! xJx
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| « Last Edit: Apr 15th, 2006, 6:47pm by seccsij » |
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CH cannot stop me from still being ME!!!!!!!!!)
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burnt-toast
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Re: Questions for folks who feel meds. don't work
« Reply #12 on: Apr 20th, 2006, 11:09am » |
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I really believe in tracking this disorder - too little is known about it to leave things to memory. Solid information from/for sufferers and their docs. is the only key we have and what better study group than ourselves.
I am proposing a stardard tracking mechanism to be used by those willing to participate and stick with it. Something easy to maintain and share. I have a form that I use that could be modified to incorporate ideas from outhers. Is anyone else interested in more formally tracking this nightmare and treatments?
Here are the links to the tracking documents in two formats.
.pdf
http://www.freefilehoster.com/view_file.php?id=99&verify_view=163284 0468
.xls
http://www.freefilehoster.com/view_file.php?id=100&verify_view=19711 09503
If you're interested email me and we'll see what we can coordinate. Let me know if you have questions or have trouble linking to the documents.
Best Wishes,
Tom
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
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