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emdub27

Help for my wife

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if it was me in your situation firstly id be getting o2 with the right set up  its a must.

2 id be getting her on the vit d regime but would get involved on the other site and get batchs help.

go here ----   http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?board=meds

link batch and others to this thread so he can see whats what.

good look

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Well, emd', I'm glad your wife's having some PF days.  At the same time, the dread of the pain returning must be terrible for her. 

First, to follow up on t'a's post, here's a link directly to the D3 thread over at ch.com.  Batch's recommended regimen is the first post.  If you can stand it, try to read (or at least skim) the whole thread.  You can post something at the end.  http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404   Even independent of her head pain, your wife ought to be getting her D levels up (it's helpful for depression, among other things), but it could very well help with the pain, too.

They never tried O2 at all?????  In the US, you can set up an O2 system relatively easily using welding oxygen. Hundreds of people do that.  If you want to try, let us know.  Or maybe be prepared to insist on it with the neuro when you see him/her (we can provide you with peer-reviewed documentation from medical journals that O2 is the abortive of choice for CH).

I don't remember what her history has been with sumatriptan injections.  If you're going the conventional meds route, it would seem to be a no-brainer to include that.  (Most of us here are not enthusiastic about anything that she's being given, let alone the cocktail, but that's the route you're on for now, very understandably. I'm hoping you can get a reliable diagnosis, and if it's CH, that she might want to try busting at some point. Right now, without a reliable diagnosis and with so much going on, I can understand a pharma-based pain-management approach.)

My understanding of medical protocol is that both lithium and verapamil need to be monitored when they are first prescribed. In the case of lithium, it's my understanding that doses need to be adjusted; with verapamil, effects on the heart need to be looked at.  I guess my only advice here is to be sure to do that follow-up with your neuro, even if she's still PF.

Since at least for the moment she is doing conventional meds, it will probably be good for you to post over at ch.com (www.clusterheadaches.com), where there's a lot of familiarity with these meds.  (Of course, this is assuming that she has CH.)  Maybe one day you/she will want to consider busting.

On a personal note, I was once in the hospital with a very painful non-CH (non-headache) condition.  The pain was nonstop and very severe, and it was just horrible.  The hospital's pain-management specialist saw me every day and we tinkered with a regimen to control the pain.  It was very comforting to have an expert helping me, and to be trying things that seemed to help.  Then, suddenly, before we had really created a fully successful plan, I got discharged because I had been there longer than my insurance thought I should be.  I'm a fairly tough guy, but I cried and cried and begged to be allowed to stay for a couple more days.  No deal.  I got discharged with a huge regimen of awful stuff (tons of oxycontin and gabapentin, among other things) that might or might not help me.  Maybe your wife isn't feeling as bad as I did, but it was one of the darkest days of my life.  After two days at home feeling like a suicidal zombie, I flushed it all down the toilet and decided to look for other solutions (which I eventually found, thank heaven). Not recommending that your wife do anything that drastic -- just encouraging you and her that there are still many possible solutions out there, however depressed and frightened she might be feeling right now.

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just encouraging you and her that there are still many possible solutions out there, however depressed and frightened she might be feeling right now.

Good advice.

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Yes, excellent advice. Thank you all for your help and suggestions. I currently don't have anyone here in Canberra with the type of knowledge you guys have, so I feel like I'm trying to convince Drs to try alternatives which is difficult.

We will see how the next few days go and I'll start chasing up the vitamin D and O2 setup -  I did obtain an O2 cylinder last year some time, I think with 15L/min regulator, but it was when my wife was getting 10/10 attacks and physically just couldn't get enough O2 into her.

Thanks again.

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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 over on CH.com.  With a 25(OH)D serum concentration of 35 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:

http://www.yourhealth.com.au/natural-medicine-alterntive-doctor-australia.php?id=43

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:

http://www.vitamindwiki.com/Overview+Loading+of+vitamin+D

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:

LatestAIFRegimen_zps0e931cc5.jpg

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:

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1890%20#1890

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 youÂ’re in doubt about starting this regimen read Zd10Â’s post in the following link:

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1393027277#2

I've left a similar post over on CH.com for you.

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

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Tangerinearmy, ThatHurtsMyHead, CHfather,

Thanks for the kind words and for pointing Emdub in my direction...  We'll see what happens...  Remember, when you depress the flush lever on an indoor dunny down under...  water spins down the drain in the opposite direction from here in the Northern hemisphere... anything can happen...

I do know that Dr. Peter Lewis is a vitamin D3 expert.  As an Integrative physician, he treats the whole body to right what's wrong with diet and supplements first, before resorting to a pharmaceutical intervention...  Even then, that pharmaceutical solution will have the highest level of efficacy with more than adequate medical evidence of safety. 

As a side note, Peter was one of the first physicians I contacted after discovering how effective vitamin D3 can be in preventing CH in 2010 and I've maintained contact since.  I've attached one of his papers on Vitamin D3.

I'm still horrified at the laundry list of phamceuticals Eemdub's wife has been prescribed.  The number of possible adverse drug interactions is very high and they're going to do more harm than good.

Take care and thanks again for the kind words.

V/R, Batch

Dr__Peter_J_Lewis_-_Vitamin_D3.pdf

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