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Cluster Headache Help and Support >> Getting to Know Ya >> New and need advice http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1331848901 Message started by 2012Clusters on Mar 15th, 2012 at 6:01pm |
Title: New and need advice Post by 2012Clusters on Mar 15th, 2012 at 6:01pm
Hi,
I'm new to my diagnosis of CH. Only this December 2011 did I realize I had a pattern. Talk about denial. I've had a daily CH for ~10 wks straight as of today, with maybe 3 days where I had about 8 PF hours each. Starting in December 2005 and Dec 2009 I also had headaches which were daily, lasting ~ 6wks each time. I took Migrin that didn't work back then, as well OTC meds that never worked - eventually they just passed. I was in total denial this time around until about January 2012. I'm currently on short-term disability because I was ramped up to 100 mg Topamax which made me scramble my words/my writing/and lose my way in the car. I couldn't do my job (frankly, still can't thanks to the CH). I even mis-wrote my own name several times. I thought I had a stroke it got so bad! That's when I finally went to a neurologist at the Headache Inst. @ St. Lukes in NYC. I'm from NJ. Right away she knew I had CH. She took me off of the Fiorcet which was causing me insane rebound headaches, off the Topamax (titrated over 4 wks). And now, about 3 wks after being off "Dopamax", I'm no longer confused or scrambling my words and feeling more clarity. I know this rx can help others, but for me it was a killer. I'm also on B12 and Vitamin D supplements. I also have controlled high blood pressure; but the doc switched me from Lisinopril to Verapamil 180 mg to address both conditions (only 3 days ago). I also take Alsuma (Imitrex equivalent) almost daily, 1-3 shots.... but to be honest, I'm not good about giving myself the shot. If it wasn't subcutaneous I think I would medicate more often for pain. I live with very consistent cycles most days (4a, 9:30a, 11:30a, 2p, and again 7p). If it weren't for my sleeping pill I'd probably feel more at night too. At times I have spurts where it will be a constant headache of varying pain ALL DAY - that's the one I think people call the Beast. It's a 10 and even the shots don't "kill" it. I read on here that Melatonin can help... I'm going to try that tonight instead of my Ambien 12.5 mg. I often halve that dosage anyway because I'm a petite woman and don't need that much I guess. I've had MRI with and without contrast, CT scans, and MRA. All show lesions, but they've ruled out lots by doing it. I had a history of Sarcoidosis of the lungs and eyes as a child, but that doesn't appear active at this time - including in my brain. So doc said this is just evidence of the frequency and seriousness of my headaches of late. When this news scared me she just said not to worry about dementia down the road. Should I really not ask more about these? Is this true this is typical and I shouldn't worry? Now I'm set to see the neuro again 3/22 and I told her I need something either in addition to the Alsuma, or other than, as an alternative... I'm muddling through CH pain some days longer than I should just to avoid the shots. She mentioned a nerve block, but I'm nervous about that - she said she'd tell me more when I get there. I was really hoping for O2 instead... Should I be afraid?? Other things I should ask or say at this appointment? I'm afraid I'm going from episodic to chronic. Is it too soon to tell? I know this was really long. I'll try to keep future posts shorter. Thanks for reading this and just being there. This has been a really awful 10 wks, and just finding this site feels like a glimmer of light. |
Title: Re: New and need advice Post by 9thNerve on Mar 15th, 2012 at 7:03pm
Hello! I am new to this CH thing also.
After 8 mos of trying every imaginable medicine (tegretol,indocin,topomax,tizinidine,IV infusions of valporic acid,tordal,dhe,mag sulfate,etc etc) and with nothing taking away the pain and only briefly breaking the cycle, I told my neurologist i needed off all the meds and to get a baseline and start over again. The underlying constant HA of 6-7 has gone away. I still get the HA's every 2 weeks and they take me out for 3-5 days. I began my own research and came up with : for sleep (because Ambien 15mg was giving me only 2.5hours sleep a night!) Mellodyn or NightRest. I also have added Butterbur and feverfew. Begin with the initial higher dose of 150mg qd. Then after a month, 50mg BID with the feverfew 75mg QD. O2 helps.Indocin 100mg with compazine 25mg and imitrex, all at the same time has knocked a 9-10+ HA down to a 4 in an hour. I also take a super B complex vit, B12 2500mcg,B2 400mg,Vit D 2000iu,Magnesium 400mg,Folic Acid 1000mg. The mellodyn has melatonin which is also suggested to help longterm with CH. Oh, and I get BOTOX in the migraine pattern q3months. Hope this helps! |
Title: Re: New and need advice Post by 2012Clusters on Mar 16th, 2012 at 11:53am
I appreciate the information you both provided! I had a terrible night... I tried just the Melatonin, without my Ambien, and I was up all night trying to convince myself to fall asleep through the pain. By 3a I gave up trying and eventually took my Alsuma and slept. I will definitely follow up with my MD to find out about the things suggested.
I don't know if anyone else struggles with pain management choices, but for some reason I do. Sometimes I "muddle through" SOMEHOW, miserably, rather than take the shot(s) at onset as directed. I know it sounds crazy considering we all know how bad this hurts. Other than being miserable, am I encouraging this cycle to last longer by sometimes delayinig my Alsuma/Imitrex?? |
Title: Re: New and need advice Post by Bob Johnson on Mar 16th, 2012 at 3:34pm
There is no virtual--but much needless pain--in not using the Imitrex at the first sign of an anttack. All abortives work fastest and best when taken as soon as you recognize an attack is developing.
If you are trying to save money, consider that poor response, when you do finally inject, is producing less value for the price. |
Title: Re: New and need advice Post by kika on May 3rd, 2012 at 9:41pm
Hi
Sorry that you need to be here. I have had CH for 12 years now and tried an occiptial nerve block for the first time last year. All it did was make the skin in that area numb for about 5 weeks, but it did nothing to prevent the attacks for me. Do you have O2? Have you tried prednisone? Those have been the most successful traditional therapies for me. |
Title: Re: New and need advice Post by Skyhawk5 on May 4th, 2012 at 1:44am
When the pain gets bad enough you'll do anything and everything to stop it.
Most Doctors know very little about CH, it is in your best interest to know more than them. There is more CH info on this site than most Dr's know. Don |
Title: Re: New and need advice Post by wimsey1 on May 4th, 2012 at 8:14am 9thNerve wrote on Mar 15th, 2012 at 7:03pm:
You've gone through quite a lot of the usual meds, but by no means all. And three of the most effective interventions aren't on your list: high levels of verapamil, high flow O2 and lithium, alone or in combination. There are others as well, but effective for a smaller population. And without the dosages of what you did take, we have no way of knowing if you were in the ballpark for their use. From the description of your OTC regimen, I think you'd like Batch's "123 days pain free..." thread. You could tweak up a bit on some of what you're already taking, and others have found it very effective. Hope this helps. blessings. lance |
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