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JoshL

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Please Help
Dec 29^th, 2012 at 9:45am

Hi,
This is my first time posting on here but I have visited the forum for help for a few years. I am about two months into my fourth cycle (ever) in about 7 years. The first 2 lasted about 2 months with the third lasting about 3. The headaches always come once a day but I've been lucky that 20mg of prednisone a day has completely stopped them for the duration of my cycles. That is until about a week ago. Now my headaches are going haywire. I'm getting them at all different times of the day, sometimes 2 in less than 24 hours. I have had 3 in the passed 16 hours and am currently in the process of losing my mind. Seeing as how my neuro is not in on weekends and Monday and Tuesday are a holiday, I have little options in the way of Doctors. If anyone has any insight as to what's going on/what I could do I would greatly appreciate it.

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Guiseppi

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Re: Please Help
Reply #1 - Dec 29^th, 2012 at 11:07am

Sadly it's not unusual for CH to miorph through the years. requiring different meds, different doses. I am not a doctor so everything I say is to be taken with massive grains of salt! Wink

If you have the pred, up the dose to say 30 or 40 a day to get you through the long weekend. I assume from your post you have no other abortives or prevents in your arsenal? Oxygen, trex etc? If that's the case get down to the 7-11 nd grab a couple cans of red bull. Chugged at the first sign of an attack many can abort or at least reduce an attack. Any energy drink containing caffiene and taurine will do the trick.

Joe

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Mike NZ

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Re: Please Help
Reply #2 - Dec 29^th, 2012 at 4:46pm

Hi Josh

As Joe said it isn't too unusual for CH to morph between cycles, so it sounds like this is what is happenng for you this cycle.

From your post it sounds like you're taking prednisione for 2 to 3 months during your cycle. This is a very long time to take this as it's pretty harsh on your body (Google the damage it can do long term). Most people use it just for a couple of weeks whilst a longer term preventive like verapamil / lithium / topomax to build up to an effective dose.

I've sent you some info via a PM which you can take to your doctor to discuss with them about other preventives.

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JoshL

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Re: Please Help
Reply #3 - Dec 29^th, 2012 at 9:08pm

Thanks guys,

I've been on Verapamil, Lithium, Topomax, and a slew of other medicines. I also have the Sumavel injections which do work, but are expensive and not something I want to rely on. I am aware of the dangers of taking prednisone for an extended period of time but I'm sure we can all agree we'd do some crazy things to ensure we don't get another headache. That being said, the prednisone is no longer working so I am back at square one. Also thanks Mike, I will take a look at what you sent me now.

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« Last Edit: Dec 29^th, 2012 at 9:08pm by JoshL »

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JoshL CH.com Newbie Offline I Love CH.com! Posts: 19	Re: Please Help Reply #4 - Dec 29^th, 2012 at 9:12pm Actually, I just read in one of the articles that clonidine is sometimes used as a preventative. I am prescribed clonidine as a sleep medication, but haven't been using it in a while. Does anyone know anything about this? I can see taking it before bed, but during the day would be difficult as it knocks me out cold.
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wimsey1

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Re: Please Help
Reply #5 - Dec 31^st, 2012 at 8:35am

Hey Josh. Clonodine isn't much used any more for CHs because it's ineffective. Some docs will try it, along with a host of other antiepileptics, when nothing else seems to work. You mentioned verapamil and lithium. It is possible you were given way too low a dose level for either to be effective. We tend to need much higher levels. For example, verapamil tends to become effective around 360mg/day and can be be administered as high as 960mg/day. I take 480 along with lithium. Read the D3 threads, and like Joe said, try slamming some energy drinks at the first sign of a hit. blessings. lance

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JoshL

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Re: Please Help
Reply #6 - Jan 4^th, 2013 at 8:23pm

UPDATE: Went to my neuro this morning. Still getting between 1-3 HA per day. He prescribed me 50 mg of indomethacin 3 times a day. I've one all the research and I'm aware it is usually prescribed for paroxysmal hemicrania headaches as opposed to clusters. I was just curious if anyone
has had any experience with it or has any insight.
Thanks again.

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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: Please Help Reply #7 - Jan 4^th, 2013 at 9:11pm Using Indo as a substitute for other standard Cluster meds raises two questions: does your neuro have experience with Cluster?; are there medical reasons for not using sumatriptan or Verap? Suggest you print out the PDF file, below, and use it to discuss options with your doc.
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JoshL CH.com Newbie Offline I Love CH.com! Posts: 19	Re: Please Help Reply #8 - Jan 4^th, 2013 at 9:19pm Yes he does, I have tried verapamil along with a bunch of other meds with 0 success and have the sumavel injections which do work.
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Mike NZ

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Re: Please Help
Reply #9 - Jan 4^th, 2013 at 9:37pm

JoshL wrote on Jan 4^th, 2013 at 9:19pm:

Yes he does, I have tried verapamil along with a bunch of other meds with 0 success and have the sumavel injections which do work.

This could mean several things. You may have tried a bunch of medications, but did you try them at a high enough dose to confirm that they really didn't work and not just they didn't work at the dose you tried? Verapamil can sometimes need a dose of up to 1000mg a day to be effective, which is significantly higher than what most doctors will prescribe it at.

It's also possible that you may not have CH, which is why the doctor is trying indomethacin as it works with some other headache types. It'll be interesting if you respond to indomethacin.

Or it could be something else, which really needs a good headache specialist to figure out, be it some other drug to combat CH or perhaps to use a combination, e.g. verapamil and lithium at the same time.

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Batch

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Re: Please Help
Reply #10 - Jan 5^th, 2013 at 2:53pm

Hey Josh,

I doubt indomethacin will have much effect on your cluster headaches... the probability of GI bleeds is a lot more likely...

Do yourself a favor and get your physician to order you a test for 25-Hydroxyvitamin D, a.k.a. 25(OH)D. This is a metabolite of vitamin D3 that's used to measure its status.

The normal reference range for this lab test is 30 to 100 ng/mL, and most physicians will say you're "normal" with 31 ng/mL... NOT !!! That is borderline deficient and just high enough to keep you from suffering from osteoporosis... 85 ng/mL should be your target concentration as a cluster headache sufferer.

When you lab results come back and your 25(OH)D concentration is significantly less than 60 ng/mL, I would start the anti-inflammatory regimen with 10,000 IU/day vitamin D3.

That may sound like a lot but it isn't... Your skin can make up to 15,000 IU of vitamin D3 in as little as 20 minutes when exposed to the UV-B in summer sunlight between 10 am and 2 pm clad in a bathing suit with no sunblock...

A lot of CH'er have used an accelerated dosing schedule of 20,000 IU/day vitamin D3 plus a 50,000 IU loading dose once a week to speed up the process of building 25(OH)D serum levels above 60 ng/mL where most CH'ers go pain free.

You can read all about this regimen and what other CH'ers are saying about their experience using it at the following link:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

The complete list of supplements used in this regimen along with dosing, dosing strategies, drug interactions and contraindications can be found at the following link:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

The latest tally of responses from the above link indicate 79% of the CH'ers who start this regimen experience a significant reduction (like ~80%) in the frequency and severity of their cluster headaches... 70% of the 300 CH'ers had a pain free response...

Take care and please keep us posted.

V/R, Batch

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Re: Please Help
Reply #11 - Jan 5^th, 2013 at 9:25pm

1. Imitrex is far safer for long tem use than pred.
2. What have been your Verap doses?, duration of use.
3. AFTER you have explored the range of med in the therapies article I sent, then, and only then, explore #4 with your doc.

4. Link to: cluster-LIKE headache.
Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

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JoshL

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Re: Please Help
Reply #12 - Jan 8^th, 2013 at 4:44pm

Batch, I have been on the D3 regimen since the cycle started a little over 2 months ago. I've also been taking calcium citrate, magnesium, fish oil, and a 1 a day vitamin. I don't believe it has had much of an effect though.

I believe my dosage for verapamil was 480mg per day, which seems low after hearing what people have recommended but I am rather light (150lbs).

As far as the indomethacin goes: I was prescribed friday, in the ER saturday afternoon after getting 3 straight headaches and was unable to reach my neuro, and was put back on prednisone. In the past, against doctors wishes, I have just spread out the predinsone at 20mg per day for the entirety of the cycle which has worked. Now I am getting the headaches even at 60mg per day. Needless to say this is all very discouraging to me, although I doubt I am the only discouraged person on this forum.

Finally, pertaining to the possibility that this may be something other than cluster headaches, I have had 2 MRIs done along with at least one other test (the name of which i know longer remember). The headaches come in 2-3 month cycles every 1.5-2 years and alcohol is an automatic trigger. I believe that I have been properly diagnosed, but hey what do I know Huh

.

Once again thank you guys very much.

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« Last Edit: Jan 8^th, 2013 at 4:55pm by JoshL »

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Re: Please Help
Reply #13 - Jan 8^th, 2013 at 4:55pm

Have you ever had your serum 25(OH)D level measured? There are a lot of different things that can affect how well your body metabolizes oral vitamin D3.

When I first started the regimen, I was taking 20,000iu per day with a 50,000iu loading dose once per week. It took me TWO MONTHS before I saw any significant improvement. Three months into it my serum level was measured at 72 ng/mL, and that was just after I came DOWN to 10,000iu/day. It seems to be my sweet spot now, but if the beast ever comes a knockin' again, I'll not hesitate to jack my intake back up to two or three times what I'm taking as a maintenance dose.

There may also be endocrinological reasons that your body isn't metabolizing the D3 as quickly as it could. You may want to consider a visit to an endocrinologist.

If you haven't had the 25(OH)D test done, you need to.

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JoshL CH.com Newbie Offline I Love CH.com! Posts: 19	Re: Please Help Reply #14 - Jan 8^th, 2013 at 5:00pm I will definitely try to get that done ASAP.
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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: Please Help Reply #15 - Jan 9^th, 2013 at 9:40am Josh, for what it's worth, when I was prescribed indocin my neuro told me if it was going to work it would work fairly quickly. Indocin responsive headaches yield almost right away to the introduction of the med. No one knows why. It's an easy fix so here's hoping it does work for you. blessings. lance
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JoshL CH.com Newbie Offline I Love CH.com! Posts: 19	Re: Please Help Reply #16 - Jan 9^th, 2013 at 3:41pm I was prescribed indocin friday, and in the hospital saturday. Stopped taking it because it made me feel crappy and I had more headaches in a 12 hour period then ever before. Back at it today for the second nerve block of my cycle, so I'm really psyched about that . Here's hoping!
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JoshL

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Re: Please Help
Reply #17 - Jan 12^th, 2013 at 8:21pm

Had the nerve block on Wed, pain free until 9 PM last night, monster headache that woke me up at 9am and promptly made me pass out from the pain (never happened before), another relatively small HA at noon, and shadows all day. I should be towards the end of my cycle by now, but for the first time in my life prednisone isn't working and the frequency is going up. Nervous that I might be going chronic, although I know this nature of the beast is that it is completely unpredictable. WHAT IS GOING ON?!

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