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her_redhed
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pls help us diagnose and cope
« on: Apr 18th, 2005, 6:46am » |
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my lovely and talented wife (and mom x2,) started oct-nov with weekly upper jaw/sinus pains. doc did antibiotics and nasal sprays. got worse 2-3x week, dec-jan, and by feb it's daily bad, sharp h/a from upper jaw into head, mostly in the evenings. always left side, leaves congestion and droop eye on that side only. she says sharp, jabbing, etc. it shadows and comes on in 5-10 minutes but ramps down only part way till the next. never while sleeping and naps always chase it away, go figure. mri's all normal. neuro started neurontin & trileptal. got worse. by march it's 2x day, she can't work or much else. several trips to the ER. next neuro tried steriod taper / topamax and now h/a specialist in boston diagnoses "chronic cluster." believe me, i know, we're but babies in this crowd. now taking verapamil 160mg, another predinzone taper and melatonin. it's been 6 weeks of double dailies but the pattern is so regular. p/f after waking in morning, #7 h/a about 2hrs later. (O2 and imitrex do help.) #4 continues through the afternoon till evening #8. if she naps afternoon we avoid the evening jackpot. some symptoms seem to fit in with you fine folks and we'd love the company but don't know if you'll have us. any thoughts from the real experts would be greatly appreciated. michael
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don
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Re: pls help us diagnose and cope
« Reply #1 on: Apr 18th, 2005, 7:41am » |
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First thing I'd do is find a new Doctor.
Quote:| and now h/a specialist in boston diagnoses "chronic cluster." |
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It takes a year to correctly diagnose chronic.
I highly reccomend Dr. Brian Lieberman in Norwood. Right across from Norwood Hospital.
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Bob_Johnson
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Re: pls help us diagnose and cope
« Reply #2 on: Apr 18th, 2005, 7:50am » |
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Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Another good source: http://www.headachedrugs.com/pdf/HA2005.pdf
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Unfortunately, getting an accurate Dx and finding meds which work is not always easy. As long as you are comfortable with your doc, stick and give him a chance to find an effective treament. One way to evaluate your doc is to print out the first article and see whether he is willing to discuss various options with you. Treating clusters is an area of medicine which is fluid & developing: be cautious about a doc who is unable to consider options.
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Bob Johnson
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her_redhed
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Re: pls help us diagnose and cope
« Reply #3 on: Apr 18th, 2005, 8:05am » |
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thanks. optimistic about new guy in boston. wife had a #8 right in his exam room which oughta' help somehow. but, you guessed it, none of the meds are the magic bullets as yet. from my read on these boards, varapamil has a way to go yet. thanks folks
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don
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Re: pls help us diagnose and cope
« Reply #4 on: Apr 18th, 2005, 8:15am » |
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Quote:| now taking verapamil 160mg |
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I'd start talking about increasing that dosage before the pred. taper is through.
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Kevin_M
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Re: pls help us diagnose and cope
« Reply #5 on: Apr 18th, 2005, 8:54am » |
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on Apr 18th, 2005, 8:15am, don wrote:| I'd start talking about increasing that dosage before the pred. taper is through. |
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Quote:neuro tried steriod taper / topamax...
now taking verapamil 160mg, another predinzone taper |
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You mentioned another pred taper, verapamil works for me but at a higher level. Work on the prevent level with the doc, can't depend on pred tapers. Sounds like you already have O2 and trex.
Kevin M
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| « Last Edit: Apr 18th, 2005, 8:59am by Kevin_M » |
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Tiannia
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Re: pls help us diagnose and cope
« Reply #6 on: Apr 18th, 2005, 3:59pm » |
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Talk to your doc. She seems to be on the right path but take as much inforation in there as you can and dont let them not discuss it with you. There are meds that help, but might not help at the lower levels. I hope that she is not chronic. That is a hard row to tow. I know 22 months for me and still going. How did she do on the topomax? That was not a med that I could take. I had violent physical reactions to it and had to come off of it before I could see any effects to the HA. I also was not on it long enough to get the memory issues that most get.
You dont have to worry about being here. This place is a big, crazy ass family that everyone is welcome. There are lots of help here for her and you. Vent, ask, laugh, cry, whatever. There is ALWAYS someone here that really does understand.
Sorry you had to find us, but glad you did.
PFDaN's
-Tia
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Kris_in_SJ
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Re: pls help us diagnose and cope
« Reply #7 on: Apr 18th, 2005, 7:49pm » |
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Hi and Welcome,
Be sure to follow Bob's links. In fact, print them out and take to your next neuro appt. Those 2 links truly saved my life last cycle.
I would also recommend an increase in Verapamil (very quickly) to at least 360mg/day - 480mg is better, but many here take even more. Your wife's blood levels need to be high before coming off that Prednisone.
I'm so sorry your wife is suffering so ... encourage her to come here and read whenever she's able. Also, you might read up on the Kudzu information that found under the "medications and treatments" section of the board.
Keep posting and let us know how things are going!
Kris
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her_redhed
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Re: pls help us diagnose and cope
« Reply #8 on: Apr 18th, 2005, 10:41pm » |
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wow, you really do love us... and it means so very much. as it happens by email this pm, the boston doc trippled verapamil (480mg) and extended prednisone taper another week. is the idea to get lots of verapamil on board while the steriod tapers? he was very familiar with the rosen info (thanks bob) and aledges interest in kudzu. very supportive of O2 and imitrex. also pain meds, none of which seem to help. my loved one continues head pain building throughout the day between two regular attacks. sleep will stop the pain and never an overnight attack. this is one of the confusing parts. she tolerates topamax (200mg) but it's really hard to tell which med is beating her up like last year's yankees... god bless you folks. michael
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don
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Re: pls help us diagnose and cope
« Reply #9 on: Apr 19th, 2005, 12:02am » |
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The idea is to get the verapamil up to a theraputic dosage. This will decrease the frequency and possibly the intensity of the attacks when the prednisone starts to taper off.
480 per day works for me.
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her_redhed
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Re: pls help us diagnose and cope
« Reply #10 on: Apr 19th, 2005, 5:45am » |
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to help break h/a pain, do you all find it helps to get your hands busy, talk to someone, take a shower, try to nap, any suggestions? she's trying to cram a day's worth of chores into a few good morning hours and at times gettin' all hyped up. steriods hadn't seemed to do much, before. screaming ER trips a day after last 2x she tapered. this is the first time around for varapamil, however. thank you folks.
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Chillrmn1
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Re: pls help us diagnose and cope
« Reply #11 on: Apr 19th, 2005, 6:08am » |
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we're all different, but when I'm at my peak with attacks, seems like they come no matter what I do. however, when the amount of attacks start to settle down, doing things and moving around does seem to help ward them off. seems like when i become idle during this phase is when i get hit.
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don
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Re: pls help us diagnose and cope
« Reply #12 on: Apr 19th, 2005, 6:19am » |
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Staying active helps me but excess physical exertion will trigger and attack.
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Gator
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Re: pls help us diagnose and cope
« Reply #13 on: Apr 19th, 2005, 11:15am » |
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Sorry to hear your wife is suffering. Am I correct that this is the first time she has had this sort of thing? When clusters first come on, they may present with atypical symptoms. It could take a while for them to settle into the typical CH traits and patterns. This is one reason it can take so long to get a proper diagnosis. I hope y'all can get things under control.
Here is a link to some non-prescription alternatives different people have used to help with the pain:
http://www.clusterheadaches.org/resources/non_script_treat.htm
If currently taking medications, I would suggest talking with a doctor before taking any of the nutritional supplements. At the very least check for interactions at a website such as:
http://www.drugdigest.org/DD/Home/AllAboutDrugs
Nutritional supplements and herbals can interact with prescription meds just the same as some prescription meds interact with each other. Better safe than sorry where your health is concerned.
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Kris_in_SJ
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Re: pls help us diagnose and cope
« Reply #14 on: Apr 19th, 2005, 8:04pm » |
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For me, when the beast hits hard, Imitrex injects are the only thing that works (for me this would be at 3 PM and again at 10 PM). But, when I'm at the peak of a cycle, I suffer shadow pains constantly (usually on a scale of 2-4). When they seem to be increasing in intensity, I find that a really strong cup of expresso or cappacino will force things back to a 2-4 kip.
Pain pills in any form never help. In fact, they can cause fairly severe rebound headaches for many people. I would highly recommend your wife stay away from Codiene, Vicodin, Percocet, Fiorinal, etc., etc. if she can. I'm also one of the weird ones in that neither heat or cold help - just make it worse, so can't advise on that one.
I do advise meditative breathing. It's hard, but can be done. I use Lamaze breathing learned waaaay back when my daughter was born.
Please feel free to email or PM if I can help in any way.
PF Wishes and Hugs,
Kris
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her_redhed
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Re: pls help us diagnose and cope
« Reply #15 on: Apr 19th, 2005, 10:23pm » |
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first timers, we are. she had occasional h/a late fall, frequent winter, daily and since march, 2x day. patterns seeming very mathematically regular. she doesn't match a lot of the textbook criteria, oh well. first blast of pred seemed to change some locations of pain but almost always from above the teeth into cranium. third round of pred now and man can she rake and weed during those few good hours (seeking exercise and sleep.) imitrex can get expensive, huh? thanks so much for the help, michael
ps kris, sounds like you've had pretty similar patterns...
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mcf69
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Re: pls help us diagnose and cope
« Reply #16 on: Apr 19th, 2005, 11:44pm » |
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Wow, I couldn't imagine being hit that much, all my thoughts, prayers and good vibes go to your wife. Keep after it, it may take awhile to find the right combination of meds, both preventive and abortive. Cluster headache treatment is not an exact science, but a good doc makes all the difference in the world, don't be afraid to get a second opinion either, or third or fourth. Print out the info provided and bring it with you, do alot of research, and be informed. Best of luck.
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Apple
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Re: pls help us diagnose and cope
« Reply #17 on: Apr 20th, 2005, 5:41pm » |
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Is she still on the Topamax? Verapamil is excellent for clusters and Topamax is FDA approved for migraines. Maybe a combination of the two would be a good treatment since she seems to be a difficult case. I'm so sorry that she is struggling so much. Is she using the Imitrex inection for home use? I love that...works almost every time for me.
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I don't have CH, I have horrible migraines. Doc says they have "cluster features." Can I still stay? Migraines suck. Can I say that?
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her_redhed
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Re: pls help us diagnose and cope
« Reply #18 on: Apr 20th, 2005, 9:51pm » |
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good take, apple. 200mg topamax and now 480mg verapamil daily. just extended the prednisone taper another week. O2 and imitrex jabber at mid-morning onset. another jabber 30 minutes later. our doc sez no more than three a day. i suspect some of you might be inclined to cheat on that number of jabbers a day. i know we would if it helped. does it help? bless you folks, it really does help us.
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Sean_C
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Re: pls help us diagnose and cope
« Reply #19 on: Apr 20th, 2005, 9:57pm » |
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Triptans have the ability to kill, especially if you mix them with other triptans. I suggest you take your doctors advice only. JMHO
Sean............................
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Kris_in_SJ
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Re: pls help us diagnose and cope
« Reply #20 on: Apr 21st, 2005, 8:28pm » |
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I recommend taking a look at the Imitrex tip over to the left. It usually takes much less than the 6mg/shot to get rid of the beast - for me, 2-3mg will do. That way, you can stretch out the maximum recommended dose of 12mg/day to 4-6 shots.
If your wife is queasy about re-using needles (like I am) Trex is also available in multidose vials for use with TB or Insulin syringes. Check with the pharmacy first, though, since it often has to be special ordered.
Too much Trex in a 24-hr. period can be very dangerous. We've seen proof on this board a couple of times.
Be careful and many hugs!
Kris
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her_redhed
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Re: pls help us diagnose and cope
« Reply #21 on: Apr 21st, 2005, 10:09pm » |
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thank you kris, and others. while imitrex and o2 help they just aren't knocking the h/a all the way out. she takes a second 30mins later but no change, really. wife suffers all afternoon with shadow pain (i guess that's what it is) till the next big h/a comes along in the evening. NOW the doc asks how we feel about hospitilization. don't know exactly why but guessing dhe. anyone have experiences with that route? i'll apologise in advance for trying to start another string on that topic but we're pretty scared and may be facing that decision in the morning.
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sgarner
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Re: pls help us diagnose and cope
« Reply #22 on: Apr 21st, 2005, 10:44pm » |
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I would have to try the Kudzo. I will probably be starting mine this weekend. Just got clearance from my Doc today to try it. (with my verapamil)
BTW I have taken as much as 960 mgs of verapamil per day to tame the beast.
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Sean_C
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Re: pls help us diagnose and cope
« Reply #23 on: Apr 21st, 2005, 11:19pm » |
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She's peeking more than likely. She should come down the slide fairly quickly.
Not much anything will knock it out totally during this period, just be careful about double dosing the triptans.
Clusters won't kill you, but the trex can ............for real.
Hang tough
Sean.......................
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