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Topic: Do Chronics have cycles? (Read 548 times) |
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karen j
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Do Chronics have cycles?
« on: Aug 7th, 2002, 7:28pm » |
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Up until about 2 yrs ago, I would have 1-2 weeks of HAs every 4 months-always at night, usually 1 a night. In July of 2000 I started having them almost every night. They usually start 2 weeks of 1-3 ha always at night, about 5-7KIP, then 2 weeks of 8-10 both day and night around 8-10 kip then anywhere from 2-10 days without any (I LOVE that part  ). Is this usual? My Dr says I am chronic and has me on Depakote 1000 mg, Indomethacin 50mg and Amitriptyline 10-30mg but I really don't see where they are helping (only been on meds for 3 months). The only thing that helps when I get 8-10 a day is percocet but I hate taking that (usually can't keep it down anyway) Just dont want to become dependent on it. I haven't found a doctor willing to write a script for oxygen. I've seen 4 drs-1 neuro and 3 GP and they all swear Depakote is the way to go. Am I just not giving it enough time? Any help would be appreciated-you guys know more about these blasted headaches than all 4 drs combined!
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don
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Re: Do Chronics have cycles?
« Reply #1 on: Aug 7th, 2002, 7:54pm » |
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If I'm reading this correctly then your Doc is wrong. Certainlt wouldn't be the first time. Lets see if I get this right;
Chronic is being unable to go 14 straight days in a one year period Pain Free without meds.
Having them every day and night is typical of an episodic in cycle.
I would not put much faith in any Doc who would prescribe a narcotic for CH but not oxygen.
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| « Last Edit: Aug 7th, 2002, 7:55pm by don » |
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2late
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Re: Do Chronics have cycles?
« Reply #2 on: Aug 7th, 2002, 8:17pm » |
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i've been chronic 4.5 years. Although my ch are much worse spring & fall i definately get a break. i'm mostly PF for about 5.5 weeks,occasional shadow only, 02 has been doin' the trick.My answer is yes,you can be chronic & still have cycles.Definatley go for the 02 i'ts been a godsend for me!!! PFDAN...........2late
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2late
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Re: Do Chronics have cycles?
« Reply #3 on: Aug 7th, 2002, 8:18pm » |
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i've been chronic 4.5 years. Although my ch are much worse spring & fall i definately get a break. i'm mostly PF for about 5.5 weeks,occasional shadow only, 02 has been doin' the trick.My answer is yes,you can be chronic & still have cycles.Definatley go for the 02 i'ts been a godsend for me!!! PFDAN...........2late
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Jim R
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lutionRe: Do Chronics have cycles?
« Reply #4 on: Aug 7th, 2002, 8:37pm » |
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Hi,
Indomethicin is usually prescribed for CPH - cranial paroxysmal hemicrania, not CH.... Percocet does the same to me - very nauseating! Although narcotics are not in any way a long-term solution, theu can make a bad CH more manageable, especially if multiple medications, like I have been on (e.g. verapamil, O2, antihistamines, etc), have stopped working. Have you tried other meds.? There are a lot and you will be able to research them all here...
Good luck and best wishes - Jim R
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Linda T
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Re: Do Chronics have cycles?
« Reply #5 on: Aug 8th, 2002, 9:08am » |
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Dear Karen.
Up to this point I have been episodic. I started this last cycle in November 2001 and its still going. I have not been med free since Nov. and I guess it's still up in the air as to whether or not I'm chronic.
I can tell you that your cycle sounds an awful lot like mine. In Nov. I started with 1 maybe 2 per nite. By January I was getting 3 per nite and up to 5-6 during the day. This lasted for 3 months.
During that time I was on depakote. I started 500mg in January and took that for 5 weeks. I was upped to 1000 mg and took that for 2 weeks. I felt like I was getting worse. As an abortive I was taking imitrex and amerge. Helped but not enough as I would have liked. I also took prednisone (2 12 day courses), amitriptilin, and naproxen. I was still getting up to 8 hits a day (except the imitrex/amerge combo helped skip at least 1 attack during the nite). I didn't get any relief from anything otherwise. In fact, I think the depakote made the cycle so much worse. I too had a neuro who thought it was to be the "magic bullet". My opinion - if it hasn't worked in 7 weeks it ain't gonna!
In the middle of April my neuro (at my instance) took me off the depakote. He started me on Inderal LA. I was upped from 60mg to 120mg and my CH was reduced to nothing more than shadows ranging from annoying to uncomfortable. Of course, I don't know if the Inderal LA is working or if my cycle was petering out anyway.
I asked my doc to reduce the Inderal and he did - to 80mg and last night I got hit with one that was more than uncomfortable but less than a headbanger. So maybe the Inderal is doing something.
Sorry to ramble but I guess in summary - I don't go for the depakote. If it hasn't worked in 3 months I suggest you ask your doc to change meds. There is something out there that will help. You just gotta keep looking. AND YOUR DOC IS WASTING TIME. You need help now. Go for it.
Wishing you all PFDAN always, Linda T
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NotH20
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Re: Do Chronics have cycles?
« Reply #6 on: Aug 8th, 2002, 9:35am » |
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Karen - check out the OUCH site for a list of recommended docs in your area. The one you have doesn't sound like he has your best interest at heart. O2 is so helpful in aborting the beast - just make sure you have the correct mask.
Also do all the research on the meds you can and bring that info along with you to the new doc - it's a plan that can be worked out TOGETHER between you and your doc.
Depakote did absolutely nothing for me except made me gain weight.  I got off that stuff as quickly as I could.
We wish you much luck - keep us posted....
NotH20
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karen j
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Re: Do Chronics have cycles?
« Reply #7 on: Aug 8th, 2002, 10:12am » |
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Thanks for all the advice. I am going to have to keep pushing the doc for oxygen. I don't have a lot of faith in any of the drs I have seen however the expense of finding one I do trust is too much right now. Good news is that I think I am about to hit a few days of no pain!! Have been doing the 8-10 for almost two weeks. Again, thanks for the advice and support!
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ltltnt
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Re: Do Chronics have cycles?
« Reply #8 on: Aug 8th, 2002, 10:24am » |
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[color=Teal][/color]Karen yes you should definitley keep pushing I am going to be 39 have been episodic since age 21 appx. and 3 years ago became chronic. It has been my experience with the anti-seizure medications they start working within a couple of weeks so either depakote is not the one for you. I would normally say it may also be the dose but 1000mg daily is pretty average. If your doctor just will not listen and is insistent on treating you with out listening to your actual complaints maybe it's time to look for a new Doc, I have been to 9 different docs before finding one I like and trust he is one state away which is a 10 hour drive but I feel he is worth it. Best of luck to you.
Sheryl
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MarkHW
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Re: Do Chronics have cycles?
« Reply #9 on: Aug 9th, 2002, 3:36pm » |
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I am chronic and I have a "cycle" of sorts.
I have periods where I have more per day (like 3 instead of 1-2). I have periods where they are more severe. From about Feb-March/April I have them really bad... like 3 a day with kip 10s... then I usually have about a week break and then they start again, but 1 most days and kip 6 or 7. After a month or two the clusters get worse again - more clusters per day and higher kip ratings, but not as bad as Feb-March.
1-3 per day and ratings from 7-10.
Mark
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ltltnt
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Re: Do Chronics have cycles?
« Reply #10 on: Aug 9th, 2002, 4:42pm » |
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[color=Teal][/color][b][/b]I so totally agree Mark my cycle? seems to be worse Kip wise and more of them during months of July and August and again November- December which when I was episodic I would start in one of these months for 2 of my 3 cycles. Still so many questions about these dern things maybe the study being done on the episodics will unlock yet another clue.
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karen j
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Re: Do Chronics have cycles?
« Reply #11 on: Aug 9th, 2002, 5:21pm » |
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I made a list of neuros in my area that are on my insurance plan last night. Started calling today to see if they are familiar with cluster headaches. Of course, all the receptionists say yes. Is there a better way to phrase what I am looking for? I am in the worst part of my cycle-getting hit several times during the day and night with 8-10 KIP so I know I am not thinking as clearly as I should. Just know I need to see someone that understands soon. Hopefully I will only have a few more days that are this bad but that darn light at the end of the tunnel is getting very dim right now . I checked the doctors listed on the OUCH website but none in Md, VA or DC are with my insurance plan so if anyone knows of any doctors in the Baltimore/Annapolis area of Maryland that they have had luck with, please let me know. Thanks again for being there for me and all the other clusterheads out there. Knowing I can come here has been a lifesaver many many times!
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ltltnt
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Re: Do Chronics have cycles?
« Reply #12 on: Aug 9th, 2002, 5:37pm » |
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 I am sorry you are feeling so bad I can not personally help you but if you cal 1-800-555-1212 and ask for the National Headache Foundation they will generally get you a list of doctors in your area I believe no more then 50 miles away. Also you could check online at WebMD.com some people have even rated these doctors so you know if you are getting someone who keeps up with new treatments, medicines etc.
Best of luck to you and my prayers are with you!!!
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ECV_XPBC
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Re: Do Chronics have cycles?
« Reply #13 on: Aug 13th, 2002, 11:03am » |
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I've been chronic since '94, and and this condition can be cyclic. It's just a matter of severity and frequency. I am currently in a mild phase (thank god, and knock formica). I used abortive ergotamine by the handfuls for years, and tried regimes of prednisone and daily lithium. Since early July '02, I started on daily lithium and verapamil with low maintenance doses of ergotamine. I take additional abortive ergot when I get hit. I'm still constantly shadowed (quite a relief from the past), and get KIP 6-8'd about every 3-4 days. THis is a REAL improvement; my wife is real happy.
It's amazing what we CH'ers consider relief - anyone else would be wimpering.
Rich
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ltltnt
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Re: Do Chronics have cycles?
« Reply #14 on: Aug 13th, 2002, 11:10am » |
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Rich,
I could not agree with you more about what we endure and what others think is painful. nGlad to hear you found a regimen that works for you. Cronic and still looking.
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TomM
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Re: Do Chronics have cycles?
« Reply #15 on: Aug 13th, 2002, 3:22pm » |
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Karen--I agree with Don. Any doc who would prescribe a narcotic for CH's does not know CH's. I am eposodic and PF at this time; my cycle is in the short day light hours of the year. I do not use O2 but many on this board have. I tried Verapamil with horrible results. The Prednisone worked for years but now I have borderline Osteoporosis and I'm only 39! Have you tried a beta blocker or calcium cahnnnel blocker?--TomM--
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Jabeen
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Re: Do Chronics have cycles?
« Reply #16 on: Aug 13th, 2002, 6:50pm » |
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Hi! Unfortunately you never know what is going to work for you. I went through beta blockers and calcium channel blockers unsuccessfully. It's frustrating because it takes so long to build up to a certain dosage and then if it doesn't work, wean off and start again. I had complete success twice with Wellbutrin-it is an anti-depressant (SSRI). As soon as they show up, I get it again and as soon as the dose is right, they go. My neuro seemed well informed and aware of the frustration of CH sufferers trying to find relief. Thats my 2 cents-Good luck-Jabeen
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karen j
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Re: Do Chronics have cycles?
« Reply #17 on: Aug 14th, 2002, 7:06am » |
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I am pretty sure I am on a beta blocker-torpol-not sure if that is spelled right but I take it for blood pressure. I have quit taking all the meds that the dr prescribed for the ch. They did not seem to be working anyway. I am out of the bad part of the cycle and now back to a couple at night. Still searching for a new neuro-hopefully by the time I start getting hit several times a day and night, I will have found someone that knows about these things! At least things are looking better right now 
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nancyc
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Re: Do Chronics have cycles?
« Reply #18 on: Aug 14th, 2002, 9:24am » |
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Yes, i am chronic and i have cycles too...Nov. is the worst month for me...i am holding my breath till it is gone...finally am pf after 9 months of continous chs...if i make it thru Nov, i will be smiling for sure..smiles,nancyc
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djp82
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Re: Do Chronics have cycles?
« Reply #19 on: Aug 14th, 2002, 9:46am » |
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Chronics do indeed have cycles, at least this one does. I have been chronic since 1994 with worse episodes in winter months. I live in Michigan so that's pretty much all year LOL. My first visit to a neurologist gave me the honor of meeting the DUMBEST person to ever obtain a medical practioners license. He too would not prescribe o2 and prescribed vicodin as an abortive. I did not pay for his student loans to long.
My family doctor after some coaxing from me sent me to MHNI in Ann Arbor. Every medical school in the United States teaches from Dr. Joel Sapers books. He is the founder of MHNI. If your neurologist has any questions I HIGHLY RECOMMEND he consult with the clinic. O2 is one of the best abortive tools to a CH sufferer. If you live close to Michigan get a refferal there. It is the best money I have ever spent in my entire life. I do not live pain free but my quality of life has improved 100%.
PFDPFN for all.
P.S. Thank god for my wife who holds my hand, wipes my tears, and gives me the strength to fight the beast
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