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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › FROM EPISODIC TO CHRONIC WHAT MEDS?

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FROM EPISODIC TO CHRONIC WHAT MEDS? (Read 2965 times)

MANDY2SHANE

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FROM EPISODIC TO CHRONIC WHAT MEDS?
Apr 16^th, 2011 at 1:23pm

I have been suffering from CH since I was 18. now 34. The combo of Verapamil/ pred always got me through my 6 week cycle. Now, in the last year they have not gone away. I am seeing a new neuro who thinks that I have become chronic. Great! Now nothing works! Pred always does of course, but you cant stay on it for long periods of time. I have tried the max of verapamil, Baclofen, Methergine, O2, Depakote, my Dr is suggestting maybe Litihum next, but I am afraid. It seems after a few days the meds actually trigger the headaches, After about an hour of taking my dose, I get hit. The sumitriptan injections stop it but my insurance will only give me so many so I usually run out. I have heard some migraine users suggest amtptriptilline? Has anyone used this? Didi it work for you? My neuro comes back into town on Monday and I know hes gonna want try something new, but its a try this try that till we find something that works, and its getting pretty tiring. The headaches are no better , somtimes as many as 3 /day and after the last med Im really scared. I was on topomax and woke up this am with blurry vision. I was off of it for 4 days. Scared the hell outta me. After reading this web site feel better some other people have had same problem. I can get by till he comes back into town on Monday, so have to wear my glasses and contacts till then. Saw my primary Dr and did a blood sugar and thats fine so almost sure it was the topomax. Sorry abouth the ramble, if anyone has any info about any meds that could be helpful please give me a hand, I'd like to go back to my dr with some suggestions ( and not lithium , i heard the side effects are awful) HELP

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: FROM EPISODIC TO CHRONIC WHAT MEDS? Reply #1 - Apr 16^th, 2011 at 2:09pm Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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Groovy Chick CH.com Junior Offline Posts: 25 Winder, GA Gender:	Re: FROM EPISODIC TO CHRONIC WHAT MEDS? Reply #2 - Apr 16^th, 2011 at 2:34pm I took Amitriptyline a while back for migraines, and it helped a bit. It didn't affect the cluster headaches at all, though. FWIW, I've been on Lithium for five weeks, and (knock wood), I haven't had any issues at all.
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MANDY2SHANE CH.com Newbie Offline I Love CH.com! Posts: 5 HAGAMAN NY Gender:	Re: FROM EPISODIC TO CHRONIC WHAT MEDS? Reply #3 - Apr 16^th, 2011 at 3:43pm NO BAD SIDE EFFECTS? ARE YOU ON THAT ALONE OR WITH ANY OTHER MEDICATION?
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QnHeartMM CH.com Sponsor Offline I AM a Phoenix! Posts: 1783 San Diego, CA Gender:	Re: FROM EPISODIC TO CHRONIC WHAT MEDS? Reply #4 - Apr 16^th, 2011 at 6:20pm My husband uses lithium and it helps alot.
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E-Double

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Re: FROM EPISODIC TO CHRONIC WHAT MEDS?
Reply #5 - Apr 16^th, 2011 at 7:57pm

What do you mean he thinks you've become chronic?
There's a diagnostic criteria.
have you met it? If not then you're episodic.

Either way your treatment isn't going to change much.
You will still deal with things the same old way that works for you.

If things have stopped working there are always other tricks to use.

It doesn't matter what your label is.

I was episodic for over 10 yrs and now Ive been chronic for 7.

These 7 have been easier than the first 10.

The only things that matters is that you stay strong, live your life and don't let the clusters rule you. Cope well and kick ass and you'll be fine regardless of what your label is

E
PS I don't use any meds

I can't believe that I have to bang my Head against this wall again. But the blows they have just a little more Space in-between them. Gonna take a breath and try again.

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Barry_T_Coles

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Re: FROM EPISODIC TO CHRONIC WHAT MEDS?
Reply #6 - Apr 16^th, 2011 at 10:43pm

If indeed you are turning chronic I suggest you look at batch's thread on vitamin D3 along with Magnesium/calcium.
I went chronic back in 2004 & started the Magnesium/calcium with D3 Oct 2006 & have had lengthy periods of remission, I went from every day hits to (My Diary) 216 days low,50 high 297 low 53 high 940 low & currently 57 high & tapering off now to 1 a day but only mild & killed with a cold pack.
I swear by this regime, it's affordable & puts life back into perspective.

Cheers
Barry

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bejeeber

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Re: FROM EPISODIC TO CHRONIC WHAT MEDS?
Reply #7 - Apr 17^th, 2011 at 3:41am

If it were me, for preventatives I'd be seriously looking into the powerful clusterbusters approach that Potter linked to which has been turning things around for chronics (here's an additional link: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

), and the D3 etc. regimen that Barry brought up,.

About your running out of imitrex injections - have you seen this tip that details how to get 2 to 3 aborts from one injector's worth?: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

You mentioned trying O2. Lots of us tried it and it stopped working for us. But that's because it was the outdated low flow rebreather way of administering it. Have you tried the MUCH more effective high flow, non rebreather O2 that is so raved about around these here parts? Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

« Last Edit: Apr 17^th, 2011 at 3:44am by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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E-Double

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Re: FROM EPISODIC TO CHRONIC WHAT MEDS?
Reply #8 - Apr 17^th, 2011 at 9:32am

Mandy,

Take the ride down to Long Island and go see Noah Rosen!!!

He's an amazing young doctor who heads up the headache center.
He used to work at Jefferson Headache. He lectured at the OUCH conference in 2005.

He treated me as an inpatient with DHE protocol in 2007.

He's outstanding!!!!!!!!!!!!!!!!!!!

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I can't believe that I have to bang my Head against this wall again. But the blows they have just a little more Space in-between them. Gonna take a breath and try again.

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Karla

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Re: FROM EPISODIC TO CHRONIC WHAT MEDS?
Reply #9 - Apr 17^th, 2011 at 10:07am

I was on lithium for over 2 years and I felt great on it and had no side effects. I was scared to go on it also. I am very sensitive to meds and if there is a problem to be had with it it is usually me. However, no problems with lithium. I took 900mg a day. They do blood tests to monitor your levels and the drs are aware of the things to watch for for serious problems on it. You may want to reconsider trying it.

I tried elavil/amytriptaline and had no luck with it. I have heard of others having luck with it tho. Just not alot. Zyprexa is another med you may want to try. Good luck and also look at the recomended clusterbuster site.

Karla&&suffer chronic ch &&ch.com groupie since 1999&&Proud Mom of Chris USMC Semper Fi

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MANDY2SHANE

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Re: FROM EPISODIC TO CHRONIC WHAT MEDS?
Reply #10 - Apr 17^th, 2011 at 11:49am

THANKS FOR EVERYONES ADVICE, I HAVE A FEW THINGS TO GO BACK TO MY NEUROLOGIST NOW . I'M GONNA ASK HIM ABOUT THE CALCIUM/MAGNESIUM D3 COMBO. DONT KNOW HOW TO WORK IT WITH MY MEDS THOUGH BECAUSE IM ALREADY ON A HIGH DOSE OF RX VITAMIN D, CALCITROL 25 MG TWICE A DAY AND 2400 MG CALCIUM AT NIGHT DUE TO DAMAGE TO MY PARATHYROID GLANDS IN 2007 FROM A THYROIDECTOMY SURGERY ( YUP BEEN "BLESSED" WITH THYROID CANCER TOO ON TOP OF THE CH). WENT TO ER THIS AM , VISION IS STILL BLURRY. I WAS RELIEVED TO FIND OUT ITS SOMETHING CALLED A MYOPITC SHIFT CAUSED BY STOPPING THE TOPOMAX? THE DR SAID SHOULD RESOLVE IN COUPLE DAYS. WISH ME LUCK AND GOOD LUCK TO ALL OF YOU.

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Batch

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Re: FROM EPISODIC TO CHRONIC WHAT MEDS?
Reply #11 - Apr 18^th, 2011 at 8:28am

Mandy,

If it's any consolation, you are a very special case when it comes to controlling your cluster headaches with the anti-inflammatory regimen of Omega 3 Fish Oil, vitamin D3 and calcium citrate tablets containing magnesium and zinc.

Clearly you need to discuss this regimen with your doctors, as it is equally clear from your last post that you're already following a well-established protocol of hormone replacement with other prescribed medications, vitamins, and minerals as a result of your thyroidectomy.

Note, I say "doctors" as I doubt your neurologist is treating your thyroid condition. Accordingly, a phone consult between your neurologist and the physician treating your thyroid condition may be in order.

As you've indicated you are already taking what you call "calcitrol" (I'm making the assumption it is actually calcitriol), the suggested starting point is to ask for a blood test of 25(OH)D3, to check the serum level of this vitamin D3 (cholecalciferol) metabolite.

You may have more than enough of it already in your system… The optimal level of 25(OH)D3 we're looking for in the anti-inflammatory regimen for vitamin D3 is shown below as suggested by Dr Peter J Lewis, MD in his paper titled, "Vitamin D deficiency: more on diagnosis and management" in nmol/L:

• <100 = Deficient
• 100-200 = Optimal
• 135-225 = Normal in sunny countries
• 500+ = Potentially toxic (this would require a sustained daily intake >/= 40,000 IU for several months)

[Note: To convert to nmol/L to ng/ml, divide by 2.5]

If your 25(OH)D level is in the optimal range and you're already taking enough calcium to lay hard shell eggs, all you may need to add is the Omega 3 Fish Oil.

Why you're a special case when it comes to finding effective methods of intervention for your cluster headaches may be of interest and worth discussing with your doctors.

The short answer is the treatment protocol you're on as a result of your thyroidectomy may be affecting your arterial pH and that may be affecting the efficacy of your CH medications if your arterial pH is too low. A simple change in diet to include more alkaline forming foods may help.

See the link provided by Barry_T_Coles for a list of alkaline and acid forming foods:

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You also might want to ask your doctors for a prescription for oxygen therapy at a flow rate of 15 to 25 liters/minute with a non-rebreathing oxygen mask.

Take care and please keep us posted.

V/R, Batch

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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E-Double

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Re: FROM EPISODIC TO CHRONIC WHAT MEDS?
Reply #12 - Apr 18^th, 2011 at 9:34am

Batch makes a very important point that many of us forget.
For some there are othe health issues involved which play or may serve a s a variable that can interfere with effective treatment.
When dealing with multiple issues it is so important to have collaboration between the drs!
Lady year I got very sick and was seeing multiple specialists. The entire team was brought together by my primary care physician who served as my quarterback or captain per se. This included getting in touch with my dr who I used fOr CH. The same is happening now as I start chemotherapy. There are different variables that will effect my treatment compared to Joe Schmo therefore I need someone tooversee everyone .

Good luck

E

I can't believe that I have to bang my Head against this wall again. But the blows they have just a little more Space in-between them. Gonna take a breath and try again.

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MANDY2SHANE

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Re: FROM EPISODIC TO CHRONIC WHAT MEDS?
Reply #13 - Apr 18^th, 2011 at 3:39pm

THANKS BATCH, I TOUCHED BASE WITH HIM BRIEFLY ON THE SUBJECT OF CALCIUM D3 AND MAGNESIUM. I PLAN ON STARTING A FISH OIL REGIMEN ANYWAYS DUE TO HEALTH BENEFITS BESIDES THE POSSIBILITY OF HELPING MY CH. I TRIED THE O2 REBREATHER MASK FOR QUITE SOME TIME, WHILE I WAS PREGNANT WITH MY SON. IT WAS THE ONLY THING I COULD USE BECAUSE OF MY PREGNANCY. I ACTUALLY PLANNED THAT PREGNANCY AROUND MY CYCLES WHEN I WAS EPISODIC, I WOULD ALWAYS GET MY CYCLE END OF JULY/BEGINNNING OF AUGUST SO I TRIED TO PLAN ON GETTING PREGNANT AROUND THAT TIME FRAME. I ACTUALLY DID SUCCEED IN GETTING PREGNANT AT THE RIGHT TIME AND DON'T YOU KNOW THAT WAS THE FIRST YEAR MY CYCLES BECAME IRREGULAR. I WAS DUE THE END OF JUNE SO I FIGURED I WAS SAFE , AND DON'T YOU KNOW I GOT HIT WITH A CYCLE THE END OF NOVEMBER! GOTTA LOVE IT! JUST A FUNNY STORY SOME OF YOU WILL RELATE TO, NO MATTER HOW "REGULAR" YOU THINK YOUR CYCLES ARE, THEY CAN ALWAYS THROW YOU THAT CURVE BALL. MY CYCLES HAVE BEEN GETTING A BIT LONGER BY A WEEK OR SO EVERY YEAR EVER SINCE THEN AND LIKE I SAID FINALLY THEY ALL " MESHED" INTO ONE CYCLE AFTER ALL THESE YEARS. I HAVEN'T BEEN PAIN FREE IN OVER A YEAR, BUT I KEEP PRAYING IT WILL HAPPEN AGAIN. THANKS AGAIN TO EVERYONES HELP AND STAY WELL.

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wimsey1

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Re: FROM EPISODIC TO CHRONIC WHAT MEDS?
Reply #14 - Apr 19^th, 2011 at 8:54am

Don't have much to add to the above, except that while you are considering lithium, you might also ask about a lithium/verapamil combination of neither works by itself. Please make notes on everything you read here and bring as long a list of preventatives and abortives you can, including clusterbusting, to your doctor. The more options you have the more hopeful, and hopefully successful, you will be. Blessings. lance

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Pixie-elf

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Re: FROM EPISODIC TO CHRONIC WHAT MEDS?
Reply #15 - Apr 19^th, 2011 at 6:53pm

I've been chronic from the get-go.

I've tried everything possible that they had to offer me with all of my medical conditions, and allergies.

I finally went to ClusterBusters, and now, my life is a hell of a lot better. Yes, I'm not pain-free completely yet. Still in cycle, but I have a FAR better life than when I started busting.

The link is in my signature. It might seem like a drastic measure, but I wish I'd have turned to it as a first line of treatment. I'd have saved myself a lot of trouble.

Mystina

As far as I'm concerned, cluster busting has been the best treatment I've tried. No migraines since I started it, and my hits have gotten so much better. Wanna know more?
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It's saved my life.

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Callico

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Re: FROM EPISODIC TO CHRONIC WHAT MEDS?
Reply #16 - Apr 23^rd, 2011 at 1:52am

I was on Lithium for a period of time and it helped. Don't be afraid of it. I did have other side effects that precluded its use though and I started using Kudzu to replace the Verap Lithium coctail I was on and it worked well for me for several years. However, I'd strongly urge you to check out the Clusterbuster method. The results I've seen around here have been nearly miraculous.

Jerry

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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