Well, I hoped I wouldn’t need to log in to this forum again. (No offense, but you understand.  ;))  Last July, my wife started having what I believe were CHs every other night.  It started the 4th of July after running a 5K, and continued every other night between 2AM and 4AM. 

Cliff Notes:  (Link is below in case anyone has the time to read the whole backstory)

-      Two different neuros said that she couldn’t have clusters, because she was a woman
-      Prednisone taper worked temporarily, but headaches returned when she tapered off. (Worse than before)
-      MRI was negative, Imitrex tablets were prescribed. They worked relatively well – within 20-25 minutes or so.  We combined this with chugging a Red Bull which helped to abort even faster.
-      After a month or so, headaches were getting worse and neuros still would not consider CH’s as a possibility.
-      She started the D3 regimen at the end of July, (a month after the HA’s started).  She was PF after about a week, and never had another CH until last night.  I must admit that she stopped taking the regimen about 2 months after she went PF.  I imagine the pain never came back because the cycle was over.
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     Fast forward to last night.  She woke up at about 3:30AM with a severe one sided headache.  She wasn’t 100% sure it was the same type headaches as last summer until it started “gathering behind her eye” – her words.  This headache was on the right side, instead of the left like last summer.  Ended up being a k5 or k6, and she was able to stay relatively calm.  She is going to call the neuro today, but I’m not confident that they will be any more helpful than they were last time.
     
That said, there is an extra wrinkle this time around because she is 9 weeks pregnant with our first child. She doesn’t feel comfortable taking the Imitrex tablets, and chugging Red Bulls daily is probably not the best thing for her pregnancy.  So my question is, would the D3 regimen be completely safe for a pregnant woman?  She has been taking 5,000 IU of D3 with her pre-natal vitamin over the past few weeks anyway.  However, the thought of a big loading dose kind of scares me a bit.  She is sleeping at the moment, but I’m sure she will insist that we send the list of vitamins and doses to her OBGYN before she starts it back up.
     
Any advice is appreciated here!   

It annoys me so much when I read these posts about neuro's who think women don't have clusters. I've been in the same position myself.  It's all over the internet, medical studies research etc etc but you get some idiot living in the dark ages and because of his incompetence your poor wife has to suffer intolerably. The first thing you need to do is find one thats a headache specialist. There are many disorders which mimic CH so it's vital to get a proper diagnosis. Each of these disorders responds to different meds so you won't get help till you know for sure what it is.

If it IS clusters then it's not unusual for the symptoms to change and for it to switch sides. Imitrex pills take far too long to be absorbed to be of much help - 20-25 minutes could well be the length of the headache anyway, but the injections are fantastic and will abort a really bad one in a few minutes (I've timed it - 6 minutes for me). That said I don't know how safe any form of imitrex would be in pregnancy and breast feeding but it's worth remembering for the future.

Sorry, I also cannot answer your question about the safety of D3, but when the pregnancy is over you should remember that the D3 should be taken for ever at a maintenance dose.

The best remedy for your wife right now would be oxygen therapy. But - THIS IS IMPORTANT - It must have a flow rate of at least 15 liters per minute (more is better) with a non-rebreather mask. If you get either of those wrong it won't work. Pure 02 would have no ill effects at all on mother or baby.

Congratulations on the baby by the way.
Maz.

maz wrote on Jun 10^th, 2015 at 9:32am:

It annoys me so much when I read these posts about neuro's who think women don't have clusters. I've been in the same position myself.  It's all over the internet, medical studies research etc etc but you get some idiot living in the dark ages and because of his incompetence your poor wife has to suffer intolerably. The first thing you need to do is find one thats a headache specialist. There are many disorders which mimic CH so it's vital to get a proper diagnosis. Each of these disorders responds to different meds so you won't get help till you know for sure what it is. If it IS clusters then it's not unusual for the symptoms to change and for it to switch sides. Imitrex pills take far too long to be absorbed to be of much help - 20-25 minutes could well be the length of the headache anyway, but the injections are fantastic and will abort a really bad one in a few minutes (I've timed it - 6 minutes for me). That said I don't know how safe any form of imitrex would be in pregnancy and breast feeding but it's worth remembering for the future. Sorry, I also cannot answer your question about the safety of D3, but when the pregnancy is over you should remember that the D3 should be taken for ever at a maintenance dose. The best remedy for your wife right now would be oxygen therapy. But - THIS IS IMPORTANT - It must have a flow rate of at least 15 liters per minute (more is better) with a non-rebreather mask. If you get either of those wrong it won't work. Pure 02 would have no ill effects at all on mother or baby. Congratulations on the baby by the way. Maz.

Thanks Maz and thanks for the congratulations!  We are very excited about the baby, but something like this definitely throws a monkey wrench in the works!

Unfortunately, the neuro we saw last time was a headache specialist.  She has an appointment with him tomorrow.  If he still won't even consider CH, we will look for a 3rd opinion. (2nd was the other neuro in this guy's office)  Their first diagnosis was migraines, and the second diagnosis was CPH (ice pick headaches).  Hopefully the fact that these are lasting 1-2 hours and came back exactly a year after last time will help open their mind a bit.

I'm going to have her take some notes to the doc tomorrow about the O2.  Fingers crossed that he is willing to prescribe.  If not, I may have to become a construction worker.

Given the special sensetivities of the fetus I would not use any medication without the doc's O.K.

MJ,

Print the following link or email it to your wife's headache specialist...  He's clearly an idiot or still living in the dark ages and in desperate need for some remedial CME on cluster headache:

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Regarding what to do... I'll echo Bobs point.  That said, a lab test for 25(OH)D is in order and if it comes back near or below 30 ng/mL, the anti-inflammatory regimen is exactly what your wife needs for her cluster headaches and during pregnancy...  It is far safer than any pharmaceutical method of CH prevention.

The Vitamin D Council of physicians and GrassRoots Health physicians all opine at least 6,000 IU/day vitamin D3 and the cofactors are needed during pregnancy in order to prevent a host of medical problems for the mother and fetus during pregnancy. This same amount is also needed by the neonate during breast feeding.

My daughter has been taking the anti-inflammatory regimen for the last four years.  She announce she was pregnant in December 2013, and said she had spoken with her OB and planned to stay on this regimen throughout her pregnancy and after as she was planning to breast feed.

And that brings me to Fred...

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Fred, a.k.a., Winefred, is an 11 month old wunderkind and our 7th grandchild. (photo taken at 6 months) Born on July 7, 2014, she was rolling over and starting to crawl at 5 months and I'm positive she started to speak words in English and German about that same time... but then I'm a doting old grandfather. 

Fred's at the 99th percentile in size, weight and development both physical and mental according to her pediatrician...  She has never had a cold, a rash, rosacea, eczma, jaundice or any of the medical problems typically experienced by many newborns.

We attribute Fred's exceptional good health and development to the fact that her mother has been taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and all the cofactors for the last four years and continues to do so while breast feeding Fred...  She's also started solid food... albeit run through an immersion blender first.

My daughter's pregnancy and Fred's delivery were flawless and trouble free.  In short this child has been on a therapeutic dose of vitamin D3 since conception and is still taking vitamin D3 today through breast feeding... 

Both my daughter's OB and Fred's pediatrician are totally on board with this regimen.  They were a little concerned at first, but after a couple rounds of labs came back in the green, the trouble free pregnancy and delivery coupled with Fred's exceptional good health... all that changed.  My daughter's OB now suggests this regimen to all his expectant and breast feeding mothers.

A recent study of breastfeeding neonates found maternal serum vitamin D3 was passed through breast milk to the suckling neonate but not maternal 25(OH)D, the first metabolite of vitamin D3.  Moreover, several studies indicate the rate of vitamin D3 transfer through breast milk is roughly one third the maternal serum concentration.

That means Fred was getting the equivalent of 3000 IU/day vitamin D3 while hooked up to cable prior to birth and she's getting roughly the same amount now from her mother's milk.

Oxygen therapy is also very safe during pregnancy and far safer than taking a triptan as an abortive.

As usual, discuss this regimen with your wife's OB or family PCP and schedule a lab for her 25(OH)D labs...

Take care,

V/R, Batch

Thanks very much to you both.

Her OBGYN gave her marching orders for a blood test anyway, just to make sure there aren't any underlying issues.  I advised her to ask for a test for 25(OH)D while she is there.

Thanks for your PM and your advice on the D3.  We will certainly run it by the OBGYN as well, but my biggest concern was the big loading dose.  Obviously getting the D3 levels where they need to be will take a bit longer without loading, but can it still ultimately climb to the same levels?

You have a beautiful grandchild there!

Batch -

I do have one more question to ask.  She has been taking NatureMade Prenatal Vitamins + DHA for a week or so. (We bought them before the CH resurfaced)  Would these be acceptable in place of the Costco Senior Multi?  We have the D3 and all of the other cofactors as listed.

(Don't worry we are still going to review the whole thing with OBGYN first.  Just trying to get ahead of the game.)

EDIT:

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My wife went to the neuro (HA specialist) again today. He said that they must be hormone migraines from the pregnancy. "No way they could be CH if the eye doesn't droop" he said.

The fact that they occurred exactly a year since they started last year, woke her up at the same time of night, and have a stabbing feeling behind the eye is apparently irrelevant. No O2 for us. If she keeps getting hit, I guess I'll have to look for alterior means to get O2.

MJ,

I never get a drooping eyelid either!

Find another HA specialist, if possible.

Best of luck.

Peter.

I agree with Peter. Find another doctor. Not everyone gets all the symptoms all the time. One common symptom is a constricted pupil in the eye, but I don't have it.

If you can, find an alternative way to get 02. There is a tab on the left of your screen called "oxygen info". It's a good read and may help you. I know some people use welders oxygen, and buy their own high flow regulator and mask. 

If your neuro is anything like my last one, he probably knows by now that it is clusters, but is just too arrogant to back down. Mine said I definately didn't have clusters because I'm a woman. He told my GP his diagnosis was TAC. When I looked up TAC on the internet, it's a generic name for a group of headache disorders, one of which is clusters. After that, he failed to keep his appointment with me, and sent his underling (still highly qualified) instead.
It was a woman, and she diagnosed clusters immediately.

Have a look on the oxygen info pages, and if you need help just say so and I know someone with far more knowledge than me will come along to advise you. And like I said - find another doc.
Best of luck. It can take a long time but you WILL get there in the end.
Maz.

Mjedwards409 wrote on Jun 11^th, 2015 at 3:22pm:

My wife went to the neuro (HA specialist) again today. He said that they must be hormone migraines from the pregnancy. "No way they could be CH if the eye doesn't droop" he said.

Your headache specialist is not really a headache specialist as he does not know or apply the standard diagnostic criteria for cluster headaches.

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Quote:

Diagnostic criteria:     At least 5 attacks fulfilling criteria B-D     Severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15-180 minutes if untreated1     Headache is accompanied by at least one of the following:         ipsilateral conjunctival injection and/or lacrimation         ipsilateral nasal congestion and/or rhinorrhoea         ipsilateral eyelid oedema         ipsilateral forehead and facial sweating         ipsilateral miosis and/or ptosis         a sense of restlessness or agitation     Attacks have a frequency from one every other day to 8 per day2     Not attributed to another disorder3 Note: 1    During part (but less than half) of the time-course of cluster headache, attacks may be less severe and/or of shorter or longer duration. 2    During part (but less than half) of the time-course of cluster headache, attacks may be less frequent. 3    History and physical and neurological examinations do not suggest any of the disorders listed in groups 5-12, or history and/or physical and/or neurological examinations do suggest such disorder but it is ruled out by appropriate investigations, or such disorder is present but attacks do not occur for the first time in close temporal relation to the disorder.

Note that it doesn't say anywhere that women do not get CH and it also has the droopy eye lid (ipsilateral ptosis) as one of the optional features (...accompanied by at least one of...).

Get a new headache specialist who has the appropriate skills.

And if you paid for the consultation, I'd dispute it too as you paid to see a headache specialist and you would expect them to at least know the standard diagnostic criteria.

Hey MJ,

I suspect the Prenatal Vitamins will be ok, but I would bounce the Supplement Facts on the back label of the Prenatal Vitamins against the table below listing the anti-inflammatory regimen supplements to make sure there's an equal amount of zinc - 10 mg/day, boron - 1 mg/day and vitamin A (retinol) at RDA.  As long as they match... your wife should be good to go...

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I still suggest both of the Omega-3 fatty acids (fish oil) and 400 mg/day magnesium.  I doubt the Prenatal Vitamins contain that much magnesium.

10,000 IU/day vitamin D3 will deplete normal levels of magnesium resulting in a magnesium deficiency without supplementing with a minimum of 400 mg/day.  She can go as high as 700 mg/day magnesium and still be very safe.  The only problem with too much magnesium is osmotic diarrhea...  Harmless but it makes trips too far away from the bathroom risky business.

Regarding the loading dose of vitamin D3...  Your wife can stick with just 10,000 IU/day vitamin D3 and that should work just fine...  I suggest the loading dose based on the most recent 25(OH)D lab test. 

If her serum concentration of 25(OH)D is below 30 ng/mL, I'd up the daily vitamin D3 intake to 20,000 IU/day for a couple weeks...  After all, if she spent 30 minutes a day out in the mid-day sun in a bathing suit without any sun bock, her skin would generate 30,000 IU of cutaneous vitamin D3 naturally...  In short, 20,000 IU/day vitamin D3 is very safe.

The rationale for vitamin D3 loading at this stage of pregnancy is simple, the health risks to the mother and fetus associated with a vitamin D3 deficiency are far greater than any possible risk associated with a vitamin D3 dose of 20,000 IU/day vitamin D3.

Again, bounce all this off your wife's OB...  Her pain specialist appears to be an idiot and not worth a hoot. 

You might want to take up Oxy-Acetylene Welding as a new hobby... You can get plenty of oxygen this way without need of a prescription...  Just don't tell the gent at the welding supply outlet what you're really doing with the Welder's O2.

I've been using Welder's O2 for many years... A fresh refilled M-size cylinder runs me $35 with tax...

Take care and please keep us posted.

V/R, Batch

Batch wrote on Jun 11^th, 2015 at 8:56pm:

Hey MJ, I suspect the Prenatal Vitamins will be ok, but I would bounce the Supplement Facts on the back label of the Prenatal Vitamins against the table below listing the anti-inflammatory regimen supplements to make sure there's an equal amount of zinc - 10 mg/day, boron - 1 mg/day and vitamin A (retinol) at RDA.  As long as they match... your wife should be good to go... START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE I still suggest both of the Omega-3 fatty acids (fish oil) and 400 mg/day magnesium.  I doubt the Prenatal Vitamins contain that much magnesium. 10,000 IU/day vitamin D3 will deplete normal levels of magnesium resulting in a magnesium deficiency without supplementing with a minimum of 400 mg/day.  She can go as high as 700 mg/day magnesium and still be very safe.  The only problem with too much magnesium is osmotic diarrhea...  Harmless but it makes trips too far away from the bathroom risky business. Regarding the loading dose of vitamin D3...  Your wife can stick with just 10,000 IU/day vitamin D3 and that should work just fine...  I suggest the loading dose based on the most recent 25(OH)D lab test.  If her serum concentration of 25(OH)D is below 30 ng/mL, I'd up the daily vitamin D3 intake to 20,000 IU/day for a couple weeks...  After all, if she spent 30 minutes a day out in the mid-day sun in a bathing suit without any sun bock, her skin would generate 30,000 IU of cutaneous vitamin D3 naturally...  In short, 20,000 IU/day vitamin D3 is very safe. The rationale for vitamin D3 loading at this stage of pregnancy is simple, the health risks to the mother and fetus associated with a vitamin D3 deficiency are far greater than any possible risk associated with a vitamin D3 dose of 20,000 IU/day vitamin D3. Again, bounce all this off your wife's OB...  Her pain specialist appears to be an idiot and not worth a hoot.  You might want to take up Oxy-Acetylene Welding as a new hobby... You can get plenty of oxygen this way without need of a prescription...  Just don't tell the gent at the welding supply outlet what you're really doing with the Welder's O2. I've been using Welder's O2 for many years... A fresh refilled M-size cylinder runs me $35 with tax... Take care and please keep us posted. V/R, Batch

Thanks Batch. Her blood results should come in tomorrow. The prenatal has everything except the boron. Is that a huge deal? Other than that we have all of the same sups as last time so it's the same basic regimen besides the multi .

Thanks for the helpful words everyone!!

MJ,

A handful of almonds a day will provide all the boron needed and a lot more other important nutrients.

Take care and please keep us posted.

V/R, Batch