My wife suffers from cluster headaches and has since age 2. She normally has medications that are pretty effective in treating her painful attacks.  However, we have recently become pregnant and she cannot take those medications for the sake of the baby. We have been to the Emergency room 7 times in 4 weeks and she has been admitted to the hospital twice and she is there as of this posting.  She can only take narcotics (the most baby safe) which masks the headaches. T The pain brings on nausea and she vomits and isn't able to keep food down.  The neurologists just shrug their shoulders and leave it to the OB.  She is hooked up to Oxygen at the hospital which only somewhat dulls the pain, but not enough to make the headache tolerable so she can eat. 
If anyone has any advice, or experience with this, or knows of a treatment I would appreciate hearing about it.

TKO,

Welcome to CH.com...  You've come to the right place...

Please believe me, I understand your concerns...  I also understand what your wife is going through with her cluster headaches and the good news is it doesn't need to be that way.

For starters, I'm not a doctor, nor am I a certified nutritionist... That said I did stay at a Holiday Inn a few years back.

Accordingly, you need to bounce all that follows off your wife's OB and neurologist.  It's very important they're both singing from the same hymnal...

Have your wife see her OB for a lab test of her serum concentration of 25(OH)D.  This is the serum level metabolite of vitamin D3 that's used to measure its status.  The normal reference range for 25(OH)D is 30 to 100 ng/mL. 

Nearly all CH'ers are vitamin D3 deficient.  i.e, a serum concentration of 25(OH)D less than 30 ng/mL.

Unfortunately most physicians unfamiliar with the health benefits of vitamin D3 will say a 25(OH)D serum concentration of 31 ng/mL is "Normal."

While that may be true in order to prevent rickets... a 25(OH)D serum concentration that low will not do squat diddly for cluster headaches and it's too low for a low risk pregnancy. 

We've collected 25(OH)D lab result data from hundreds of cluster headache sufferer's (CH'ers).  The average 25(OH)D serum concentration before starting the anti-inflammatory regimen with 10,000 IU/day vitamin D3 was 24.3 ng/mL, (60.75 nmol/L).

80% of the CH'ers who start this regimen experience a significant reduction in the frequency, severity and duration of their cluster headaches...  75% experience several 24 hour pain free periods and 60% remain substantially pain free...

When these CH'ers had their 25(OH)D tested, the 25(OH)D serum concentration averaged 79 ng/mL.

If your wife's 25(OH)D lab test comes back indicating > 30 ng/mL or even up to 50 ng/mL, she needs to start vitamin D3 therapy asap...  This is very good for her and the baby in her tummy...  If she's home, call her OB about the lab test and starting the anti-inflammatory regimen asap!

Most of the vitamin D3 experts...  i.e., Jedi Masters of vitamin D3 therapy, say 7,000 IU/day vitamin D3 should be taken during pregnancy.  Some of the other vitamin D3 experts say pregnant ladies should take 10,000 to 15,000 IU/day... all the way through the pregnancy... and after...

In either case, both of you should talk with your wife's OB about the Anti-Inflammatory regimen.  It's very safe because it's formulated with off-the-shelf nutrients, vitamins and minerals that are all very healthy for women during pregnancy.

The following link will provide you and your wife with your reading assignment for the evening.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

As you'll see, opinions among the experts differ slightly on the dose to take... That said, all are convinced your wife needs vitamin D3 during pregnancy... and after...  It makes for better breast milk for the baby... 

Most vitamin D3 experts say 60 ng/mL is a good target 25(OH)D serum concentration to shoot for during pregnancy...

Please understand... that's for normal, otherwise healthy women... not a pregnant lady with cluster headaches...

As a CH'er... your wife falls into another category...  She will need to shoot for a 25(OH)D serum concentration range of 60 to 110 ng/mL, or an average of 85 ng/mL.

The important thing to understand about proper vitamin D3 therapy is we need to take more than just the vitamin D3...  We also need the vitamin D3 cofactors...  These are the essential supplements that aid in vitamin D3 metabolism...  They include: calcium, magnesium, zinc, boron, vitamin A (retinol) and vitamin K2 (MK-4 & MK-7).

You'll find the complete anti-inflammatory regimen "How To" guide with the list of supplements, suggested doses, vitamin D3 dosing strategy, drug interactions and contraindications at the following link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

You can also find a condensed version at VitaminDWiki at the following link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The bottom line is your wife needs to be taking a minimum of 7,000 IU/day vitamin D3...  10,000 to 15,000 IU/day is likely even better for her and the baby.

After your child's birth. both mother and baby need vitamin D3 supplementation, particularly if breast feeding.

Again, talk with your wife's OB... if he or she comes down with anal leakage over the suggested doses of vitamin D3 or the target 25(OH)D serum concentration your wife needs to maintain in order to stay cluster headache pain free... take along some of the material from the VitaminDWiki web site WRT vitamin D3 during pregnancy...

If my wife was pregnant, I'd be saying the same thing... except that would be a medical rarity as she's kicked the heck out of 76 and turns 77 in December...  Go figure...  I'd also tell her to use oxygen therapy as a custer headache abortive...

There are a number of articles that say taking sumatriptan succinate, (imitrex) as a cluster headache abortive, and verapamil as a cluster headache preventative are OK during pregnancy...  I disagree... and I would argue my wife and her neurologist out of her taking either of them...

My wife also takes the same anti-inflammatory regimen as I do as a chronic CH'er...  except she's been taking 15,000 IU/day since she started this regimen in December of 2010.  She looks great, feels great, and has more energy than I've seen in 20 years. 

She was also a chronic migraineur with migraines hitting once a month for 3 to 5 days in duration like clockwork...  She hasn't had a single migraine headache since she started this regimen...

One last note... You need to be on this same regimen as well... The health benefits are too numerous to count... The only note of caution is when both you and your wife are on this regimen... fertility can go up significantly...   :o

Please feel free to PM me with questions...  If you're anything like I was when my wife got pregnant for the first time...  you've got more questions than Carter's Little Liver Pills...

Take care and please do keep us posted on your wife's progress...

V/R, Batch

Batch,
Thank you so much for this and taking the time to send such detailed information. I will begin work on this ASAP and let you know what I find out.  Thanks again@

Welcome to the board TKO, thanks for taking such awesome care of my CH sister! If my wife hadn't found the original CH streaming board all those years ago I's still be chewing aspirin and snorting lidocaine! :o

Listen to what Batch says, the man knows of what he speaks. I'm 3.5 years pain free on the D-3 regimen after well over a 30 year run of episodic CH. Hoping it proves the miracle for your wife that it's been for me and so many others.

Joe

I know I have been away a long time but am UTTERLY gobsmacked that no-one on here asked what flow rate 02 was given???? The normal 02 rate given in hospitals is too low for CH. The safest treatment for a pregnant woman with CH is 02, not verap, not triptans, not vitamins and definitely NOT narcotics

Hey Pubgirl,

I'm with you on women with cluster headache using oxygen therapy during pregnancy and avoiding verapamil, sumatriptan succinate and narcotics...

That said... I will cross swords with you when it comes to the need for proper nutrients, vitamins and minerals during pregnancy

Vitamins are very important during pregnancy and in particular, vitamin D3. Taking 7,000 to 10,000 IU/day vitamin D3 along with the cofactors is a very healthy choice for mother and the bump from developing embryo all the way to delivery.

See the following link for the list of problems encountered during pregnancy due to a vitamin D3 deficiency... and the health benefits attributed to taking effective doses of vitamin D3 through pregnancy and while breast feeding.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Take care,

V/R, Batch

Where did I say vitamins weren't important in pregnancy? I am not an idiot, I think you are clouding the issue- we are talking about a pregnant woman needing to abort attacks!!!

Oveer the years I've regularly scanned medical literature for guidance re. pregnancy and have been consistently surprised at how little material is available. I'm just going to dump the major abstracts I've found and suggest that you print them and give to the doc.

Because of the many unknowns about early fetal development, I'd urge a high level of caution about about starting any self-directed treatment of the Cluster.
====================
Headache. 2009 Jan;49(1):136-9.
Cluster headache during pregnancy: case report and literature review.

Giraud P, Chauvet S.

Centre hospitalier d'Annecy, Service de Neurologie, Metz-Tessy, France.

A 32-year-old pregnant woman presented with cluster headache (CH) during the third trimester of a normal pregnancy. Pure oxygen mask inhalation was ineffective, and intranasal lidocaine applications were realized associated with oral methylprednisolone, given at 1 mg per kg once daily. These treatments rendered the pain tolerable and the pregnancy went to its term with no consequence on the baby. This case of CH attack during pregnancy raises the issues of the influence of sexual hormonal changes in women with CH and the way to treat this disease in such circumstance. To date, there are no therapeutic guidelines available; this case suggests some possibilities.

PMID: 19125883 [PubMed]
=============
Ann Pharmacother. 2008 Apr;42(4):543-9. Epub 2008 Mar 18.
Use of 5-HT1 agonists in pregnancy.

Evans EW, Lorber KC.

Department of Clinical and Administrative Sciences, College of Pharmacy, University of Louisiana at Monroe, Monroe, LA, USA. eevans@ulm.edu

OBJECTIVE: To report and evaluate available data on the use of serotonin 5-HT(1) agonists (triptans) during pregnancy. DATA SOURCES: A PubMed search, limited to English-language articles on human subjects, was conducted (1990-December 2007) using the search terms pregnancy, migraine, and the individual triptan drug names. In addition, the manufacturers of all 7 available triptans were contacted regarding the existence of a pregnancy registry for their drug(s) and the availability of registry reports. STUDY SELECTION AND DATA EXTRACTION: All retrospective and prospective studies reporting on pregnancy outcomes after the use of a triptan were included and critically evaluated. Data from all available manufacturer-sponsored pregnancy registries were also included. DATA SYNTHESIS: Safe and effective treatment of migraine during pregnancy is imperative. DATA INVOLVING SUMATRIPTAN AND, TO A LESSER EXTENT, NARATRIPTAN AND RIZATRIPTAN, EXIST PRIMARILY REGARDING EXPOSURE IN THE FIRST TRIMESTER. THESE DATA SHOW NO SIGNIFICANT DIFFERENCES IN CONGENITAL MALFORMATIONS OR POOR PREGNANCY OUTCOMES WHEN COMPARED WITH EXPECTED RATES IN THE GENERAL POPULATION OR WITH THE OBSERVED RATES IN CONTROL SUBJECTS. THERE IS VERY LITTLE INFORMATION REGARDING EXPOSURE IN MIDDLE AND LATE PREGNANCY. CONCLUSIONS: SUMATRIPTAN APPEARS TO BE A SAFE TREATMENT ALTERNATIVE FOR PREGNANT WOMEN WHO EXPERIENCE NEW-ONSET OR WORSENED MIGRAINES IN THE FIRST TRIMESTER. FURTHER OBSERVATION IS NEEDED PRIOR TO RECOMMENDING ITS USE IN LATER TRIMESTERS. BASED UPON AVAILABLE DATA, THE OTHER AGENTS IN THIS CLASS CANNOT BE RECOMMENDED FOR USE DURING PREGNANCY AT THIS TIME.

PMID: 18349309 [PubMed]
--------------------------------------------------------------------------------

Ther Drug Monit. 2008 Feb;30(1):5-9.
Triptans in pregnancy.

Soldin OP, Dahlin J, O'Mara DM.

Department of Medicine, Georgetown University Medical Center, Washington, DC 20057, USA. os35@georgetown.edu

The triptans are a class of tryptamine-based drugs indicated for in the treatment of migraine headaches. The triptans act as serotonin (5-hydroxytriptamine) (5-HT) agonists by binding to various serotonin receptors, causing vasoconstriction and neuronal inhibition to alleviate migraines. There are 7 types of triptans currently available on the U.S. market: almotriptan, eletriptan, frovatriptan, naratriptan, rizatriptan, sumatriptan and zolmitriptan. The objective of this study was to examine the use and effects of triptans in pregnancy. ALTHOUGH THREE OF THE TRIPTANS HAVE PREGNANCY REGISTRIES MAINTAINED BY THE MANUFACTURER, TRIPTAN USE IN PREGNANCY HAS NOT BEEN EXTENSIVELY STUDIED. INFORMATION ON THE USE OF SUMATRIPTAN DURING PREGNANCY IS RELATIVELY MORE ABUNDANT, BECAUSE IT HAS BEEN ON THE MARKET LONGER THAN THE OTHER TRIPTANS AND MAY ALSO HAVE A HIGHER PERCENTAGE OF THE MARKET SHARE. THERE ARE NO DATA TO SUGGEST TERATOGENICITY FOR ANY OF THE TRIPTANS, ALTHOUGH PRETERM BIRTH RATES APPEAR TO BE ELEVATED.

Publication Types:
Review

PMID: 18223456
==============
Cephalalgia. 2009 Jan 19. 
Treatment of cluster headache in pregnancy and lactation.

Jüergens TP, Schaefer C, May A.
Department of Neurology, University of Regensburg, Regensburg, Germany.

Treatment of cluster headache in pregnancy and lactation. Cephalalgia 2009. London. ISSN 0333-1024

Cluster headache is a rare disorder in women, but has a serious impact on the affected woman's life, especially on family planning. Women with cluster headache who are pregnant need special support, including the expertise of an experienced headache centre, an experienced gynaecologist and possibly a teratology information centre. The patient should be seen through all stages of the pregnancy. A detailed briefing about the risks and safety of various treatment options is mandatory. In general, both the number of medications and the dosage should be kept as low as possible. PREFERRED TREATMENTS INCLUDE OXYGEN, SUBCUTANEOUS OR INTRANASAL SUMATRIPTAN FOR ACUTE PAIN AND VERAPAMIL AND PREDNISONE/PREDNISOLONE AS PREVENTATIVES. IF THERE IS A COMPELLING REASON TO TREAT THE PATIENT WITH ANOTHER PREVENTATIVE, GABAPENTIN IS THE DRUG OF CHOICE.

WHILE BREASTFEEDING, OXYGEN, SUMATRIPTAN AND LIDOCAINE FOR ACUTE PAIN AND PREDNISONE/PREDNISOLONE, VERAPAMIL, AND LITHIUM AS PREVENTATIVES ARE THE DRUGS OF CHOICE. As the individual pharmacokinetics differ substantially, adverse drug effects should be considered if unexplained symptoms occur in the newborn.

PMID: 19170693
===========
Curr Pain Headache Rep. 2010 Apr;14(2):164-73.
Treatment of cluster headache in pregnancy and lactation.
Calhoun AH, Peterlin BL.
Source: Department of Psychiatry, University of North Carolina, Carolina Headache Institute, Chapel Hill, 27516, USA. calhouna@carolinaheadacheinstitute.com

Abstract
Cluster headache (CH) is a neurovascular headache syndrome characterized by headache attacks that occur with a circadian and circannual periodicity. The calculated prevalence of CH in reproductive-aged women is 7.5 of 100,000 women. Although data suggest that CH during pregnancy is a relatively rare condition, when it does occur, attacks remain unchanged in character and severity in the majority of patients. Thus, treatment of CH in pregnant and lactating women may remain a significant therapeutic challenge. This manuscript briefly reviews the epidemiology of CH in women, and then focuses on treatment options for both acute and preventative management of CH in pregnant and lactating women.

PMID:20425207[PubMed]  [Take this citation to your local library; they can obtain a full copy of the article for little cost.]
========
Cephalalgia. 2009 Apr;29(4):391-400.
Treatment of cluster headache in pregnancy and lactation.
Jürgens TP, Schaefer C, May A.
SourceDepartment of Neurology, University of Regensburg, Regensburg, Germany.

Abstract
Cluster headache is a rare disorder in women, but has a serious impact on the affected woman's life, especially on family planning. Women with cluster headache who are pregnant need special support, including the expertise of an experienced headache centre, an experienced gynaecologist and possibly a teratology information centre. The patient should be seen through all stages of the pregnancy. A detailed briefing about the risks and safety of various treatment options is mandatory. In general, both the number of medications and the dosage should be kept as low as possible. Preferred treatments include oxygen, subcutaneous or intranasal sumatriptan for acute pain and verapamil and prednisone/prednisolone as preventatives. If there is a compelling reason to treat the patient with another preventative, gabapentin is the drug of choice. While breastfeeding, oxygen, sumatriptan and lidocaine for acute pain and prednisone/prednisolone, verapamil, and lithium as preventatives are the drugs of choice. As the individual pharmacokinetics differ substantially, adverse drug effects should be considered if unexplained symptoms occur in the newborn.

PMID:19170693[PubMed -
========
Title:  Treatment of cluster headache in pregnancy and lactation. 
Source:  Calhoun, A H. Current Pain And Headache Reports Volume: 14 Issue: 2 (2010-04-01) p. 164-173. ISSN: 1531-3433

(Local library can obtain a full copy. Provide full citation.)
===========

[quote author=0E232E13062324223F23224C0 link=1385502269/7#7 date=1388506140]Oveer the years I've regularly scanned medical literature for guidance re. pregnancy and have been consistently surprised at how little material is available. I'm just going to dump the major abstracts I've found and suggest that you print them and give to the doc.

Because of the many unknowns about early fetal development, I'd urge a high level of caution about about starting any self-directed treatment of the Cluster.

Couldn't possibly agree more Bob  :)

pubgirl wrote on Dec 30^th, 2013 at 11:19pm:

The safest treatment for a pregnant woman with CH is 02, not verap, not triptans, not vitamins and definitely NOT narcotics

Hey Pubgirl,

Sorry if I stepped on your tail feathers, but it did appear you were grouping "vitamins" in with verapamil, triptans, and narcotics."  Wuz that a typo?

We've data from hundreds of CH'ers who have experienced a pain free response to the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3... and no longer need abortives...

Take care,

V/R, Batch