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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › Help end the madness

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Help end the madness (Read 2779 times)

emdub27

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Help end the madness
Mar 19^th, 2015 at 6:20am

Hello, I've been posting over at clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1425464986 about the madness my wife has been going through recently. We still don't have a long term solution and any suggestions would be greatly appreciated. I've started reading about the vitamin D regime and think we should start that.

Given all the medicine she has tried, is it worth trying anything again in case the dose was wrong, other meds interfered etc? Any other thoughts?

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emdub27 CH.com Newbie Offline I Love CH.com! Posts: 3	Re: Help end the madness Reply #1 - Mar 19^th, 2015 at 6:23am Sorry about just linking to the other forum but there's quite a lot of medicines and treatments I've listed there plus board member suggestions. Thanks for any help.
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Bob Johnson

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free." -Epictetus

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Kennett Square, PA (USA)
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Re: Help end the madness
Reply #2 - Mar 19^th, 2015 at 8:48am

We can all understand your burden and frustration.

BUT, to expect each person who is willing to help you to try and locate your posts on the other site is not going to work. (I tried twice and failed.)

Sugest that you write a good SUMMARY of your situation focusng on:

1. the docs (all of them) who have been involed--their background/education in treating headache.
2. outline of the treatments which have been tried. With meds--med, dosing, how long used, results.
3. outine of symptoms, major changes over time, response to treatments used, etc.
4. where you live.

Reading the entire history will not be as useful as a coherent summary. TOO much matrerial is confusing/misleading for us, not being M.D.s.

Bob Johnson

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emdub27

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Re: Help end the madness
Reply #3 - Mar 19^th, 2015 at 11:06pm

Sorry about that Bob, I thought it might have been easier that way. Here's a bit of a summary based on the info I have. I am currently going back to Drs and hospitals to get a full history.

My wife has suffered migraines all her life, usually getting one every few months or so. Around April/May last year she got a headache which didn't go away after a day or two and was not a migraine headache either. After about two weeks we were beginning to worry as the headache was not going away and had begun to exhibit the characteristics of cluster headaches. We went to the GP who quickly diagnosed her with cluster headaches. Since then my wife has not had a single headache free day, so this places her in the chronic category.

She was put on Verapamil straight away, starting low and increasing to 360mg - which is her current dose. This seemed to reduce the number of attacks from 20-30 per day down to around 12, but the pain was still 9-10/10. She has had maybe 6 courses of steroids which usually take a couple of points off the pain scale. She tried oxygen therapy, but was to too physically exhausted at that time to probably inhale enough for it to work. She tried 4 different triptans with no affect. She tried topiramate for a little while which didn't help and made her terribly sick. She has also had two rounds of some strong anti-inflammatories but I forget the name of that one.

She has had 3 injections. The first was into the greater optical nerve around September 2014, this brought the pain from around 7/10 down to 3-4/10 so was pretty successful. A couple of months later she had another of these which had no affect. Early this year she had an injection into the dorsal root C2 which didn't have much affect if any. Since then the pain has steadily risen. Usually my wife describes the pain as very acute, located around the eye, always the left side, lasts for 5-30 minutes (sometimes longer), is followed by shadow headaches until the next attack, eye waters, nose runs, no aura or tingling like with her migraines, they happen day and night, often at similar times.

We started seeing a Neurologist (who is experienced in headaches, having worked with many sufferers in his private practise and headache clinics) in Jan who put her on Sandomigrane - she was taking 2mg. This doesn't appear to be helping. About a month ago the pain was around 7/10 with up to 10 attacks per day, but there was one week where she was getting lots (like 30) little headaches of shorter duration. This change, plus not really reacting to any of the "normal" line of medicine, caused the Neurologist to consider a mis-diagnosis. He put her on Lamotrigine 100mg to treat her for SUNCT but this doesn't appear to be helping either.

About 2 weeks ago she was admitted to hospital as she was getting somewhere between 20-30 headaches at 7/10 pain - they were almost hourly. While she was in hospital she was given:

Lidocaine (up to 4mg IV) - this brought the pain down to 3/10 and had a calming effect
Indomethicin (50mg) - took for 5 days but stopped as neuro said that was enough time to see results
Methylprednisone (1000mg in 50mL) - 3 doses over 3 days which took away all the pain
+ all her previous meds

She came home from hospital yesterday and was prescribed:
Lithium (500mg)
Amitriptyline (100mg)
Gabapentin (900mg)
Verapamil (360mg)

I managed to get her vitamin D and testosterone levels checked, vitamin D came back at 34 nmol/L and testosterone came back at less than 0.4 nmol/L.

Now she feels completely zapped coming off all those drugs. On top of that, around 36hrs after the last steroid dose she started getting spasm-like feelings around the pain area. She said it feels like the headache pain but only lasts a second and occurs infrequently. So who knows what will happen next but she is understandably quite anxious.

Any thoughts are very much appreciated.

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Mike NZ

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Oxygen rocks! D3 too!

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Auckland, New Zealand
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Re: Help end the madness
Reply #4 - Mar 19^th, 2015 at 11:25pm

G'day from the other side of the ditch and welcome.

For anyone wanting to read what Emdub's wife has been going through, the thread on the CB site can be accessed via:

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

It sure sounds like she has been going through a pretty rough patch with a bit of confusion as to what the diagnosis is, if indeed one has been given yet. They seem to be throwing multiple different drugs at her all in an effort to get something to work even though they don't seem to be giving enough time to allow anything to work. It really sounds like she needs to be working with an experienced headache specialist who will take the time to work out what the correct diagnosis is and then the appropriate treatment.

GPs, even most neurologists no matter how well intentioned rarely have the skills or experience to diagnose CH as part of the diagnosis is ruling out all other causes, not just the matching of the symptoms.

The number of attacks at 20-30 per day initially sounds extremely high for CH, although that alone wouldn't rule out CH, just putting it at the very high end of the frequency spectrum. Matching this, the duration of 5-30 minutes is at the very low end for CH.

A verapamil dose of 360mg a day can be effective for many, with most responding at between 360mg and 480mg a day, although some need to go to just over 1000mg a day. It also takes 7-10 days for a verapamil dose to become effective, so it takes a bit of patience.

For CH it is unusual for triptans to not take effect, especially if sumatriptan (imitrex / imgran) injections have been tried as these are very commonly used as an abortive.

Has she had an MRI scan?

And no matter what it is, we know just what it is like to get severe headaches and to go through what is often a long, painful experience to get a diagnosis.

There are also a few other people from Oz on here, so they may be able to give you some local info or suggestions too.

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Help end the madness Reply #5 - Mar 19^th, 2015 at 11:57pm Hi emdub, and welcome, I'm sure your wife has been all around the world of CH treatments. So, if she wants to try the vitamin D3 regime which has lots of us here CH free, just shoot Batch a PM, and he will talk you through it, and hopefully get your wife CH free. Hoppy.
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Peter510

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Don't give out... But
don't give in.

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Wexford. Ireland
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Re: Help end the madness
Reply #6 - Mar 20^th, 2015 at 1:36am

Hi emdub,

Your wife's D3 level,at 34 nmol/L is extremely low.

I have had Ch for 13 years with the last 2 turning chronic, so I feel for her.

When I had my D3 checked about 8 weeks ago I was at 33 nmol/L and my Doctor was a bit shocked. 4 weeks later, after starting Batch's D3 regimen, I had it checked again and was 163nmol/L.

The difference in frequency, duration and severity of attacks was dramatically improved. I believe Batch would tell you the target to get to is 200nmol/L. I'm due to have another measurement taken in the next 2 weeks.

Whatever the final diagnosis, your wife needs to address her D3 deficiency now that she knows how low it is. Maybe she will get the kind of benefit I and many others did.

Nobody here underestimates the importance of a good supporter and you are certainly that, so thank you from everyone here for that.

Mind yourselves (both) during this journey and don't underestimate the stress this is putting on you too.

Keep updating.

Peter.

You don't stop laughing because you grow old....You grow old because you stop laughing.

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AussieBrian

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CH - It's all in your
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Cairns, Qld, Australia
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Re: Help end the madness
Reply #7 - Mar 20^th, 2015 at 2:40am

G'day Emdub, and welcome. Anyone who helps a headache sufferer is a friend here.

Many of the symptoms you outline fit neatly into a delightful little headache syndrome called paroxysmal hemicrania and this is likely why the indomethicin was tried.

It has a terrific success rate but for the doctor to take her off it after only 5 days because it wasn't working sounds a little odd.

For me it commonly takes 7 days to start and 10-12 days before it's really effective. Mind you, it's a magic bullet after that.

Please let us know how you're getting on. We care.

My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com

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Batch

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Control The Beast With
O2 & D3 You Must

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Bremerton, WA
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Re: Help end the madness
Reply #8 - Mar 20^th, 2015 at 6:41am

Emdub27,

G'Day Mate... Sorry to be so late to the party and that your wife is having such a horrible time. I just read your posts. With a 25(OH)D serum concentration of 34 nmol/L, your wife is clearly vitamin D3 deficient and that deficiency is almost surely contributing to her headaches.

You need to get her started on vitamin D3 repletion therapy ASAP. Call her PCP or whoever ordered the 25(OH)D lab test and discus vitamin D3 repletion therapy and the contents of this post. You need to ask for at least 70 of the 10,000 IU vitamin D3 liquid softgel capsules...(NOT VITAMIN D2, it is less effective than vitamin D3 and will interfere with vitamin D3 metabolism).

Your wife is going to need to start repletion therapy with a vitamin D3 loading schedule of least 700,000 IU of vitamin D3 spread out over two weeks at 50,000 IU/day vitamin D3.

If her physician gives you any push back or refuses to prescribe your wife the vitamin D3 capsules above, give Dr. Peter Lewis, MD a call at his YOUR HEALTH office in Manley (NSW). His number is 02 9977 7888. His website link follows:

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

Peter is an Integrative physician. He understands vitamin D3 deficiency and knows how to treat it.

Tell Dr. Lewis your wife's 25(OH)D serum concentration, a brief recap of her headache history and the prescription medications she's presently taking. You can also tell him Pete Batcheller sent you... I realize it's a three hour drive up to Manley, so if you can't make it up to see him, ask him if he has a colleague in the Camberra area qualified to treat a vitamin D3 deficiency you can contact.

If Dr Lewis can take your wife as a patient, I'm quite confident the first thing he's going to do after starting her on vitamin D repletion therapy is take her off all the crap she's presently taking... I'm not a doctor... but the list of med's she's been prescribed has likely resulted in polypharmacy... The sooner she's detox'd off of them the better.

Assuming your wife's PCP goes along with vitamin D3 repletion therapy... as I indicated above, she is going to need to start a vitamin D3 loading schedule of least 700,000 IU of vitamin D3 spread out over two weeks at 50,000 IU/day vitamin D3.

Your wife will also need at least 600 to 800 mg/day magnesium during the loading schedule as she is almost certainly magnesium deficient as well... Moreover, vitamin D3 at these doses consumes magnesium rapidly. Without magnesium supplements during the loading schedule, her magnesium deficiency will only get worse.

I know 700,000 IU of vitamin D3 sounds like a lot... but we're talking a micronutrient measured International Units (IU). The IU is a measure of strength used for most vitamins.

Accordingly, taking 50,000 IU/day vitamin D3 equates to 1250 micrograms (µg or mcg) and if you convert that to miligrams (mg) it works out to 1.25 mg/day of vitamin D3.

There are several studies where adults have been given a single oral dose of 500,000 to 600,000 IU vitamin D3 with no problems noted. See the following VitaminDWiki link for an overview of vitamin D loading:

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

The suggested loading schedule you should discuss with your wife's PCP follows:

Day 1 - 10,000 IU vitamin D3 plus 600 mg of magnesium, 2000 mg Omega-3 fish oil, a good multivitamin tablet, and a vitamin B50 tablet.

This first day of 10,000 IU of vitamin D3 is basically a test case to make sure your wife isn't allergic to vitamin D3. A vitamin D3 allergy is very rare and not a big worry but this first day's dose is still a prudent first step.

Day 2 is the start of the two week vitamin D3 loading schedule.

Your wife will need to take the following supplements at the doses indicated daily for the next 14 days:

(Note - with the exception of the magnesium which should be split in two doses AM and PM to prevent osmotic diarrhea, all the rest of the daily supplements should be taken with the largest meal of the day... as in eat first then take the clutch of supplements.)

50,000 IU vitamin D3 (5 of the 10,000 IU vitamin D3 liquid softgel capsules)

800 mg magnesium (split the dose in half with 400 mg in the am with food and the other 400 in the PM with the largest meal of the day)

Omega-3 fish oil 2000 mg (Usually two to four liquid softgel capsules depending on the strength. Check the serving size on the back label)

Multivitamin - 1 tablet

Vitamin B 50 - 1 tablet

Schedule another lab test of your wife's 25(OH)D at the end of the 14-day loading schedule. Her PCP may want to test her total serum calcium and parathyroid hormone (PTH) at this time.

This loading schedule should result in your wife experiencing a 25(OH)D response of 175 nmol/L on top of her starting value for a total of 209 nmol/L. If her 25(OH)D over shoots to a higher serum concentration there's no real worry.

Most physicians who understand vitamin D3 repletion therapy won't be alarmed even if your wife's 25(OH)D serum concentration reaches 250 nmol/L... The lowest 25(OH)D serum concentration associated with vitamin D3 intoxication is 500 nmol/L... and there are some vitamin D3 experts who opine the real 25(OH)D threshold for vitamin D3 intoxication is much higher around 750 nmol/L.

As soon as you get your wife started on the vitamin D3 repletion therapy, the next step is place the following list of supplements on order at iherb.com so she can start the anti-inflammatory regimen.

The following table represents the latest list of anti-inflammatory regimen supplements and doses:

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

A CH’er in the UK has found that iherb.com has everything your wife will need. See his post at the following link for details on how to order them over the Internet:

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

If your wife responds to this regimen like most CH'ers she should experience a significant reduction in the frequency, severity and duration of her headaches within the first five to 10 days. As soon as she is back feeling human again, have her talk with her physician about coming off all the other crap she's taking...

If you’re in doubt about starting this regimen read Zd10’s post in the following link:

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

I've left a similar post for you over at ClusterBusters.

If you've any questions pm me over at CH.com or give me a Skype call. My Skype Name is pete_Batcheller

Take care,

V/R, Batch

« Last Edit: Mar 20^th, 2015 at 11:58am by 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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