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Topic: doc talking hospital, or no? (Read 349 times) |
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her_redhed
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doc talking hospital, or no?
« on: Apr 22nd, 2005, 6:59am » |
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we're new here and bless you for having us. lovely wife (and mom x2) fighting cluster symptoms occasionally since fall, double daily since march. imitrex and o2 help at first. sometimes a second imitrex 30mins later. O2 is wonderful. suffers all afternoon with shadow pain (i guess that's what it is) till the next big h/a comes along in the evening. 3 days into upped verapamil doseage (480mg) and third time around with prednisone. topamax (100-200mg) for a month. NOW the doc asks how we feel about hospitilization. don't know exactly why but guessing dhe or other iv med. we like the guy and think he's up on h/a. she's had neuro exam, mri, etc, all normal. anyone have experiences with the inpatient route? if they can cobble even a few p/f days with their wonder drugs, will that help break the cycle? do y'all have suggestions for testing / treatments we could seek in the hospital? i'll apologise in advance for starting another string slightly off our original topic (pls help us dx & cope) but we're pretty scared and facing this decision soon. thank you so much. michael
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lionsound
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Re: doc talking hospital, or no?
« Reply #1 on: Apr 22nd, 2005, 11:48am » |
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michael,
I was very closet to inpatient last summer....turns out I didn't need to because I began to get better treatment. and a better treatment plan. Has your neuro explained to you to your satisfaction what to expect or what your choices are if you go and if you decide not to go?
What does the doc see one week, two weeks, and two months from now?
I think you said somewhere that your wife's doc is a HA specialist....is that self proclaimed or do they only see HA patients? Just curious. I go to NECH in Stamford, CT. I can't recommend it highly enough. (if you want more info PM me) I have a complicated combination of headaches like your wife.
Many people here have been inpateints...someone should be along soon to answer more about that.
be well,
lionsound
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her_redhed
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Re: doc talking hospital, or no?
« Reply #2 on: Apr 22nd, 2005, 4:41pm » |
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hi lion. it's a headache/pain clinic attached to a big ole boston hospital. the doc has many credentials and also cares deeply. we just got in there two weeks ago and haven't had the long term prognosis talk yet. importantly, they've been using the same meds you fine folks have been talking about. still haven't broken the beast however. and, we're wondering just what the hospital might have to offer that the local pharmacy cannot and what experiences others have had. thanks again.
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Kevin_M
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Re: doc talking hospital, or no?
« Reply #3 on: Apr 22nd, 2005, 5:11pm » |
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on Apr 22nd, 2005, 4:41pm, her_redhed wrote:it's a headache/pain clinic attached to a big ole boston hospital.
they've been using the same meds you fine folks have been talking about. still haven't broken the beast however |
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Same I go to, except a large hospital's headache extension institute local to where I live. You mentioned going to 480mg on the verap. Started how long ago? It takes time for it to work effectively. If side effects are going ok, I've had to go to 600mg. Doc said she'd go to 720mg before trying something else. 600mg turned the corner for me.
Kevin M
* I see three days.
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| « Last Edit: Apr 22nd, 2005, 5:30pm by Kevin_M » |
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don
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Re: doc talking hospital, or no?
« Reply #4 on: Apr 22nd, 2005, 5:19pm » |
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Quote:| anyone have experiences with the inpatient route? |
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Yup. Two days inpatient IV Dhe. Broke a 9 month cycle and ended up with a 3 year remission.
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her_redhed
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Re: doc talking hospital, or no?
« Reply #5 on: Apr 22nd, 2005, 10:48pm » |
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finally a reason to consider inpatient (thanks again don.) when family doc and suburban neuro recommended she go inpatient a month ago, it was for the pain meds... and, i suspect 'cause they were out of science. ended up trying to get admitted through the ER but house neuro there sent us home. don't know much if anything about dhe but sounds like breaking the cycle - even a few days can be a turning point.
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don
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Re: doc talking hospital, or no?
« Reply #6 on: Apr 22nd, 2005, 11:33pm » |
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That cycle was brutal. I had lost about 25 lbs. and my skin was grey.
Was no longer sure what day it was or what time of day.
4 or 5 KIP 8-9(s) day and night.
My neuro was more frustrated than I was. He called me one day and told me to meet him at the ER in Norwood. He gave me a shot of morphine just so I wouldn't be allowed to drive home (escape) and he signed me in.
Sneaky bastard.
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Renee
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Re: doc talking hospital, or no?
« Reply #7 on: Apr 23rd, 2005, 7:10am » |
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3 days inpatient for me and I'm chronic. Received DHE via IV 7 times (every 8 hours) and was pf for 2 months.
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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her_redhed
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Re: doc talking hospital, or no?
« Reply #8 on: Apr 23rd, 2005, 7:31am » |
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our doc has been petty darn good about emailing updates on his thinking. we're meeting in person to discuss options this week. he's gonna love hearing what don, renee, kris, et al have to say. i have hopes that the verapamil will reach effective levels over the weekend and dhe drip won't be needed. that drip sounds like small science, like the suburban hospital would work as well as the big city...? he's also mentioned maybe switching verapamil to defakote (?) do y'all like that one? again, thanks
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Kris_in_SJ
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Re: doc talking hospital, or no?
« Reply #9 on: Apr 24th, 2005, 8:17pm » |
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I'm not sure I'd be ready to switch from Verapamil just yet. For me, it takes about 7-10 days at high doses before I notice a decrease in intensity and frequency. Can't speak to Depakote since I've never tried it, but it seems worthwhile to give the Verap a chance.
The DHE could be a good thing, if it looks like things aren't improving.
Hugs,
Kris
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Lizzie2
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Re: doc talking hospital, or no?
« Reply #10 on: Apr 25th, 2005, 9:35am » |
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I'm the unlucky statistic but for some reason I keep on trying it. I've been inpatient 8 times...I think just the last 2 were since I got CH.
My last hospital stay was down here in Philly at Jefferson Hospital for 17 days. On the day I left, I still had two cluster attacks which reached max capacity.
Ah well...if given the chance, I'd probably just keep trying it. Nothing else seems to be working much better!
Complicated headache types are the ones they like to put in hosp. I have a form of chronic daily migraine, chronic clusters, and basilar migraine...or some mix of some such insanity. Wish I had more answers for ya!
Best of luck,
Lizzie 
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her_redhed
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Re: doc talking hospital, or no?
« Reply #11 on: Apr 25th, 2005, 11:56pm » |
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verap (up to 480mg) and topamax (up to 200mg) for the past 4 days may have delayed loving wife's morning h/a by a few hours and decreased the intensity of afternoon attack, but the pain inbetween is still... well, a real pain. we're up a few p/f hours over last week and that's a genuine blessing. also, a slightly new pattern from the past few months. as y'all must have experienced the fatigue of fighting this b*st*rd is very draining. this may be why the doc asked about hospital. or who knows, maybe he's got a magic wand that he's been waiting for just the right moment to use. regardless, thank you folks for the wonderful support and suggestions. michael
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