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Topic: pls help us diagnose and cope, atypical (Read 632 times) |
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her_redhed
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pls help us diagnose and cope, atypical
« on: Oct 12th, 2005, 11:41am » |
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My lovely wife has suffered cluster type h/a attacks for a year, daily 7 months. Couple of h/a specialists in Boston and bunch of neuros have (witnessed and)diagnosed clusters but (god bless her) she just doesn't respond to treatments. Been through the O2, Imitrex, Verapamil, Depakote, Lithium, DHE IV and a whole bunch more. Hospitilized at Mass General for DHE, also 2 weeks at Michigan HeadPain Institute. She got one pf day after a chemical nerve block and 1/2 day from an RF block. Her pain comes on like classic cluster, spikes around kip8 but then tapes off and lingers kip3-4 for several hours. Anyone hear of that sort of pattern.... or know how to get out from under it?
thank you, Michael
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kcopelin
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Re: pls help us diagnose and cope, atypical
« Reply #1 on: Oct 12th, 2005, 1:07pm » |
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Michael,
Sorry to hear about your wifes' headaches. Sounds like she's been treated and diagnosed, just nothing is working. You didn't mention melatonin-which might help night hits if she gets those. As far as being atypical-yeah clusters can linger-some folks believe it is because of the meds-unmedicated =more intense but shorter hits and cycles. Don't know that there is any documentation for that.
Anyway, praying her cycle ends soon. Hang in there.
Kathy
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Gator
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Re: pls help us diagnose and cope, atypical
« Reply #2 on: Oct 12th, 2005, 1:56pm » |
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Hi Michael. Sorry to hear your wife is suffering so. When she tried O2, what type of mask and at what flow rate did she use it. A lot of people who O2 doesn't work for at lower flow rates find it works quite well at 15lpm via a NON-REBREATER mask. If the prescription route doesn't work, there are several alternative methods being used that are described on the Medications board.
You are an awesome supporter. Keep searching, dude. The answer is out there somewhere. In the meantime, is she registered on this website? If not, she'd might be surprised at how much interacting with other clusterheads can help. I know you are going to do everything in your power to help your wife. Just don't forget to take care of you, too.
Mike
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lionsound
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Re: pls help us diagnose and cope, atypical
« Reply #3 on: Oct 12th, 2005, 3:05pm » |
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on Oct 12th, 2005, 1:56pm, Gator wrote:
she'd might be surprised at how much interacting with other clusterheads can help. |
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The support here is the better than any med.
And Michael, we are here for you too.
Seems like you've tried everything. And I'm sorry your wife is still suffering.
Maybe a new doc if you could tolerate it? Seems like you are willling to travel. I live in Maine and travel to NECH (New England Center for Headache) in Stamford, CT. Worth every second of my travel and $ i spend there. I was on my way to inpatient last year until I went there.
I have Migraines, clusters and ice pick HA's. Currently on no meds, only O2 because I'm pregnant. Lots of pain to be sure, but very different when you have a good doc and amazing supporters to back you up.
PF's for your wife and you!
-lionsound
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Sean_C
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Re: pls help us diagnose and cope, atypical
« Reply #4 on: Oct 12th, 2005, 4:00pm » |
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Hi Michael,
The sound advice above seems to about say it all. You seem to definately be a great supporter. Every clusterhead should be as lucky as your wife in that aspect 
I have had cluster headaches for 26 years and have had experiences where the pressure lingers on for hours and hours before ramping up to another attack, however its usually only at the peak of my cycle. Most meds do not work for me during this time also, making the agony of this anomoly even worse.
I'm from the Boston area (South Shore) as are a few other great folks here, if you need any help or advice we're not far away. Reading and asking questions are welcomed here always 
I left you a message in your box its on the upper right corner.
Wishing your wife some pain free time,
Sean.....................................
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unsolved1
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Re: pls help us diagnose and cope, atypical
« Reply #5 on: Oct 12th, 2005, 4:00pm » |
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You also mentioned Imitrex. Well nothing works for me either, except Imitrex injections. Did she try the injections? Just curious.
Hope she finds some relief soon!
PF Wishes
UNsolved
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her_redhed
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Re: pls help us diagnose and cope, atypical
« Reply #6 on: Oct 13th, 2005, 7:59pm » |
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wow, thank you folks. what was scarey this week was revisit by mid-morning bangers as well as the regular afternooners. seemed to go back to pattern after three days and that's better. we haven't gotten to the end of the rope by any means but sometimes i think i can see it from here. lessee.... yup, imitrex by auto inject up to 2x / attack, never really helped. O2 by rebreather but think only up to 12 liters, it did help some last spring when she also had morning h/a's about kip 3. we met some nice folks at the michigan headpain hospital this summer who also spoke very highly of connecticut, our doc in mass knows them as well. melatonin 6mg at bed has been part of the cocktail for awhile. while in hospital at michigan they tried all sorts of iv med combinations and ended up doing trigeminal nerve block but it only lasted a day. she's gotten off most of the meds -especially the pain pills- and lowered the doses of verapamil and lithium since early fall, helps her feel much better the rest of the day but didn't change h/a pattern. i keep asking h/a specialist about the kudzu. he talks about the italian implants. and i don't think she's up to the clusterbusters. though our young kids might enjoy seeing the results. i hope things go well for you lion, children are wonderful even during difficult times. thanks again everyone.
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LeLimey
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Re: pls help us diagnose and cope, atypical
« Reply #7 on: Oct 14th, 2005, 3:43am » |
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Hi Michael, I'm sorry to hear about your poor wife but I'm so glad she has you, you'll never know how much an awesome supporter eases our burdens and thats a fact. You have my complete respect and gratitude.
I'm concerned about your doctor mentioning implants, which ones is he on about? There are a couple of "varieties".. I personally would have tried everything else twice before I'd even consider surgery.. thats irreversible and scares me silly.
Let us know which one he is rattling on about and we'll find you some more info on it but in the meantime I'd definitely see another doctor who isn't slash happy first.
Keep talking to us, we will help you find your silver bullet 
Regards to you and all your family
Helen
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CHTom
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Re: pls help us diagnose and cope, atypical
« Reply #8 on: Oct 14th, 2005, 6:38am » |
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Michael, so sorry to hear about your wife's pain. You mentioned that her doctor has been talking about "Italian Implants"; was he speaking of the Medtronic Soletra 7426? The Italians have done about 30 implants of this device with excellent results on severe, chronic CH patients (if it doesn't work, taking it out is not a major problem, nor is the insertion of it). Please let me know and if so, did her doctor suggest where it would be done. Keep holding on.
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MJ
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Re: pls help us diagnose and cope, atypical
« Reply #9 on: Oct 14th, 2005, 9:19am » |
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Sometimes while coming to grips with the CH it is so extremely difficult to find the what works for you treatment, especially the first years.
From both my experiences and the knowledge gained from reading here. So many treatments and variations of treatments work for some and not others as you too are finding.
I found in the past myself and as mentioned by others that many of the meds epecially pain relievers do indeed cause that lingering 3 hour effect you mentioned. I found that mental exhaustion for me is an intensifier of CH. Physical exhaustion no effect.
Stimulants like strong coffee, etc.. can sometimes help to recover from the "linger".
The faster one can recover from the hits the easier it is to move on and clear your mind.
If not for the family at least with a clearer mind its easier (not easy) to face the next attack. As well as resume some kind of normality. while trying to find a treatment.
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MJ
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don
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Re: pls help us diagnose and cope, atypical
« Reply #10 on: Oct 14th, 2005, 10:54pm » |
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I suggest Dr. Brian Lieberman at Norwood Hospital.
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Jester
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Re: pls help us diagnose and cope, atypical
« Reply #11 on: Oct 17th, 2005, 9:00am » |
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Probably already checked this, but a rebreather with all gaps sealed might help.
Also, I vote for Zomig over Imitrex, but that's just me.
Bless you for being supportive...!
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her_redhed
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Re: pls help us diagnose and cope, atypical
« Reply #12 on: Oct 18th, 2005, 1:41pm » |
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thanks again folks,
the dayside bangers seemed to have passed. lovely and talented wife had interuppted sleep the nights before and now that she sleeps through, the beast only comes in the afternoons. backed way off the pain meds this summer which makes life much better but didn't really seem to shorten her attacks. it's the length of pain that has the docs call her symptoms atypical. her main guy is a good guy. he speaks of implants only conversationally and mostly following his return from a recent conference in italy. sez they have the freshest research on clusters. sez the brits are working hard. and that the michiganders have the best inpatient. we enjoyed their hospitality and iv meds but it just didn't take. any of you'all have experience with rf nerve blocks. she's had two and they want to do more. best, michael
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Azrael
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Re: pls help us diagnose and cope, atypical
« Reply #13 on: Oct 19th, 2005, 7:24pm » |
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I see that you didn't mention indomethacin in the list of treatments she's tried. Indo is almost 100% effective on other HAs similar to CH, and can be fairly effective on CH too... Especially atypical CH from what I've read. Y'all may want to ask the doc about it if she hasn't tried it yet. Just a thought.
PFDAN............................... Drk^Angel
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her_redhed
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Re: pls help us diagnose and cope, atypical
« Reply #14 on: Oct 21st, 2005, 8:03am » |
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yeah, they had her try the endomethacin but only for a few days last spring. alas, no joy. currently taking dapakote, verapamil and melatonin. just signed up for a zomig trial. (thanks someone for posting) zomig sounds to me like imitrex, just not as messy. has anyone had luck with the zomig sprays. likewise has anyone had luck with the rf nerve blocks. wife had one (small one to be safe sed the doc) and it didn't help much either.
thanks, michael
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