Hello,

I have recently been diagnosed with cluster headaches after 20 years of being sent back to ENT for sinus headaches. I was prescribed with indometacin which did seem to help although, with side effects. My husband and I have decide to try for a second baby and my GP advised me to stop taking the indometacin and to take paracetemol only, which isn't working at all and the headaches are worse than before taking the indometacin. The GP has now prescribed me Co-codamol but this doesn't seem to work and I have been really ill since starting to take it. Does anyone know if there are any meds that work for CH that are safe to take in pregnancy that I can suggest to my GP?

Thanks

Kirsty,

This is going to sound off the wall, but the best thing for you to do is start the anti-inflammatory regimen with 10,000 IU/day vitamin D3.

I'll explain...  Over 400 cluster headache sufferers (CH'ers) here at CH.com have started the anti-inflammatory regimen since December of 2010.  80% of them have experienced a significant reduction in the frequency, severity and duration of their cluster headaches.  70% experience 24 hour pain free periods and 60% have remained completely pain free.  There have been no reports of adverse reactions requiring medical attention.

See the following link for details on the over-the-counter nutrients and supplements used in the anti-inflammatory regimen along with suggested dosing, vitamin D3 dosing strategies, drug interactions and contraindications:

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This is a very safe and effective regimen for preventing your cluster headaches and in your case, increase your odds for a very healthy pregnancy without any fear of problems caused by invasive cluster headache medications.

I'm not a doctor so all I can do at this point is provide you with information on this regimen, why it is a far safer method of controlling your cluster headaches than the standards of care medications used for cluster headaches and how it enhances the odds of a very normal and healthy pregnancy.

Discuss this regimen with your OB and neurologist.  Ask for the lab test for 25(OH)D also called 25-Hydroxyvitamin D.  This is a metabolite of vitamin D3 that's used to measure its status.  The normal reference range for the 25(OH)D lab test is 30 to 100 ng/mL

So far, every CH'er who has gone in for this lab test before starting the anti-inflammatory regimen has reported their 25(OH)D serum concentration less than 30 ng/mL. 

In short nearly all CH'ers with active CH will have their results for this lab test come back indicating a vitamin D3 insufficiency 20 to 30 ng/mL or a vitamin D3 deficiency, < 20 ng/mL. 

That means the odds are you are vitamin D3 deficient/insufficient and that condition is contributing to the frequency, severity and duration of your cluster headaches.

Now for some more good news how vitamin D3 improves the odds for a normal and healthy pregnancy and a healthy baby.

See the following link to the VitaminDWiki website.  It will provide you with information on the latest RCTs involving pregnancy and the benefits of pre and post natal vitamin D treatments:

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This link should be required reading for all couples wanting to have a baby.

Besides preventing your cluster headaches safely and effectively, which is reason enough for you to start this regimen, your husband needs to start it as well...  Studies have found fertility goes up significantly when both of you are on a vitamin D3 regimen with at least 10,000 IU/day vitamin D3.

Safety...  You'll likely hear warnings from the nervous nellies how taking too much vitamin D3 results in toxicity/intoxication and that prolonged dosing with 10,000 IU/day vitamin D3 will get your 25(OH)D serum concentration too high...

The following chart developed by Dr. Robert Heaney, MD illustrates the average 25(OH)D response to various doses of vitamin D3 over time.

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I've overlaid the color bands to indicate cluster headache status.  As you can see 85 ng/mL is well below the upper normal reference range limit yet well within the 25(OH)D "green zone" (60 to 110 ng/mL) where CH'ers report favorable responses to the anti-inflammatory regimen.

In order to put the safety of vitamin D3 in perspective... There were no deaths due to vitamin D3 reported to the FDA over the last nine years.  There were 99 deaths attributed to PARACETAMOL and 10 intra-uterine deaths attributed to CO CODAMOL over that same period.

See the following link for further details:
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Finally, I've been on this regimen since October of 2010 taking 10,000 to 20,000 IU/day and with the exception of three burn down tests of my 25(OH)D reserves where I stopped taking the entire regimen until I got hit...  I've been completely and blissfully pain free. 

My wife has been taking this regimen as well since Dec 2010 except she takes 15,000 IU/day vitamin D3.  She was a 20 year chronic migraineur with attacks coming like clockwork 3 to 5 days in duration every month before she started this regimen.  She hasn't had a single attack since. 

She looks great, feels great, and has more energy than I've seen in 20 years.  She's also 76 years old and runs my legs off... go figure...

I know I've given you a lot to digest so please feel free to ask questions. PM me if you like.

Take care and please keep us posted.

V/R, Batch

Hi Kirsty and welcome

Was it your GP who diagnosed CH? From the suggestions of paracetamol and co-codamol there are strong indications that their knowledge of CH is very limited since these pain killers will not remotely touch the pain of a CH, they will result in rebound headaches if taken too frequently and they are not the standard medication used for dealing with CHs. Even the strongest narcotic pain killers are not really effective with CH.

It is also of interest that your headaches respond to indomethacin since this is not a standard CH medication, although there is mixed evidence about if it is effective for CH (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - says not, START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - says it does).

It is strongly recommended that you work with a headache specialist to get a definitive diagnosis as it is possible that you have a different headache type, more than one headache type or something else. This is a complex area of medicine that GPs and even many neurologists have little experience of.

In addition to a diagnosis, they should be able to advise on what the appropriate treatment will be for you, especially with you looking to become pregnant.

In general, CH treatment covers a preventive which will reduce the number of CHs you get, something like verapamil, lithium or topomax. Then an abortive which will kill off a CH when you get it with good examples being oxygen and imitrex injections. However your plans may affect which options are available to you.

Keep reading here and you'll learn a lot about CH plus ask any questions you can think of.

Oxygen may be just what you are looking for! Read up at the oxygen info tab to the left.

Hi Kirsty,

perhaps your doctor has (free) access to the full text of the following paper by subscription:

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The following is free full text

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Edit to add: Regarding paracetamol please see also

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Best wishes!

The literature on this issue is thin in both quantity and in broad agreement--rather a surprise to confront this situation every time I do a search.

Read the  PDF file, below.

I have several other articles which are too long to be posted here. If you will send me your e-mail address to me via e-mail (button bottom of this message) I can send several abstracts which you can print for you and your doc to discuss.

Second PDF file on the next message.

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Second PDF file mention in previous message.

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Thanks so much everyone for your advice, shortly after I posted on here I had another appointment with my neurologist and she sent me for an MRI but I am still waiting for the results which I am told I should receive a letter this week. So I have just been waiting for that and completely forgot to keep checking back here for replies. All the information is very useful and informative, and I have just realised I was taking high dose vitamin D last time I was trying for a pregnancy (my mother had MS and MS has been linked to low vit D in pregnancy) so that may have been why I didn't have as many headaches last time. I'm kicking myself I didn't check back here sooner now! I will pm those who asked with my email address. Thanks again for all your help, it's good to know there is help out there and so many people who know what it is to suffer with CH.

If indomethacin works, that's almost diagnostic of a somewhat similar headache disorder called cephalgia hemicrania. Obviously you need a solid diagnosis, which sounds imminent, and someone prescribing who knows their stuff.

I'm trying to remember but I don't recall having any CH during pregnancy. One pregnancy went june-march and the other Jan-Oct. Nov/Dec/Jan was always CH season for me. But I sure did get hit after that last baby was born in Oct!

I started getting CH at age 28 and went 25 years without a diagnosis.

A bit off topic, but I wonder what if any stress is imparted to the unborn child while having a CH attack?
Are the Triptans (ie Imirex) a NOGO for pregnant women?
After my last go around with steroids, I'm attempting to not use any preventive meds and just using Imitrex injections / Monster Energy as needed.

Pain meds are useless for CH.
As someone who deals with a Pain Management Dr. for a previous pelvic injury, I'm uniquely qualified in this area.
One could be completely sedated and still feel a CH attack.

PT,

If you check the literature on taking sumatriptan succinate during pregnancy, you'll find a common theme...  "The safety of using Imitrex during pregnancy has not been established"

On the other hand, a growing number of OB are putting their patients on prenatal vitamins with at least 4,000 IU/day vitamin D3.  There are some who say 10,000 IU/day is even better and completely safe.

My daughter is pregnant and I've talked her into taking 10,000 IU/day vitamin D3 and her OB said go for it...  a 25(OH)D serum concentration range of 60 to 80 is optimum...  during pregnancy and in preventing CH...

If you're looking for a safe cluster headache abortive...  oxygen therapy is still the safest and the first abortive of choice according to the Standards of Care treatments recommended by the European Federation of Neurological Societies (EFNS).

See my post on this topic above in this thread.

V/R, Batch