Hi, all.

I am newly diagnosed with CH and 19 weeks pregnant. *sigh*

I'm 32 years old and this is my first pregnancy. My first CH experience was about two years ago. I was traveling out of state to visit family and it was totally unnerving but I attributed it to some crazy reaction to flying. I did some Googling at that time and thought "maybe this could be cluster headaches." But since I didn't have another any time soon thereafter, I just kind of chalked it up to a weird travel experience.

A year later (almost exactly), I traveled to San Francisco for work and experienced another round of insane headaches. I simultaneously developed a sinus infection so naturally assumed the headaches were some bizarre combination of the infection and travel.

Nearly 5 months later I found myself 14 weeks pregnant and experiencing the worst pain of my life behind my right eye, multiple times per day. My OB referred me to a neurologist who diagnosed me with cluster headaches immediately. ("Luckily" I actually suffered an attack during my appointment with her.) She said this is likely that I've had CH before, likely will in the future, and that something about pregnancy is just making them worse.

My attacks last anywhere to 15 minutes to 3 hours, during which my right eye droops, waters, and my right nostril runs. It looks like I'm sobbing only from the right side of my face. They have been occurring 3-5 times every day for nearly the past 4 weeks.

My neurologist has ordered oxygen for me since I guess there isn't much else that can be used to treat me right now.

I guess I'm fortunate that my pregnancy has been otherwise totally uneventful and healthy. Besides my CH attacks, I have been totally fine. I guess generally I'm just sad/scared, mostly by the thought that this is my new life and I will have to manage this with a new baby.

Well, that's me. Just thought I would finally say hello since I've been lurking for a few weeks now. Thanks!

  You will really like the O2  It works.

    Potter

G'day, welcome, and there's lots of ladies here can perhaps tell you stuff us blokes can't, but in the meantime it's great you've already got the O2 happening.

Top left of your screen is a button marked "Oxygen Info" and this will help you get the best gear to start with.

There's good days ahead and you're among people who care,

Brian down under.

Hi there,

Welcome to CH.com. There is always someone here who understands, so post anytime, even if it's just to vent.

Go to the Medication & Treatments section and scroll down to the thread "123 days pain free..." and start reading. There is a lot to read but it will be worth it.  The Vitamin D3 regimen discussed there is changing the lives of many of us and it can for you too. Your pregnancy (many congratulations) should not be an issue.

In the meantime, our good friend Batch will, most likely, contact you with some bespoke advice, which I urge you to take on board.

SO...read up on D3, keep positive and ask as many questions as you want.

Peter.

O2 is a godsend for me.  But you have to have the right equipment.

I bought my regulator from Amazon: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I bought my non-rebreather mask from clusterheadaches.com: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I don't use the actual mask, I just put the tube the mask fits on into my mouth.  I use Batch's hyperventilation technique.  See reply 4 of this thread: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I find it works very well.

I'd be curious as to the effect of pregnancy on D3 serum levels and vice versa.  You might want to talk to your Doc about that. My D3 level was at 37 when I was really getting hit.  Since I went on the D3 regimen, my episodes have been short and mild.  I should be in an episode right now, but am only getting a few shadows, a bit of red eye and a little eye watering, knock on wood.

Hi Mack, and welcome.  Congratulations on the pregnancy.  I won't pretend having CH and a new baby is going to be a walk in the park, because it won't.  However, although probably not wise right now, there are treatments that work pretty well to keep CH under control, so don't lose heart.

Oxygen therapy is the first choice for many of us, and absolutely the best thing for you at this time. Completely safe for you and the baby no matter how much you use.  But after the baby is born there is plenty that helps.  I'm sure your doctor will advise when the time comes. Just hang in there.

As Peter has said, if you get a message from Batch you should take notice.  He has the best advice you will hear.
Maz.

Hey MackLogan,

Welcome to CH.com.  You've come to the right place.  I've already sent you a PM you need to read.  You access your PM inbox by clicking on the You have 1 new message in bold under the date in the upper left corner of this page.

Take care and please keep us posted.

V/R, Batch

I trust you'll work closely with you doc about taking anything without is O.K. Meds/drugs which are benign when not PG can have different effects now. This is a major reason why treating Cluster, when PG, is difficult--may meds are limited.

Thanks, everyone.

I'm so glad to have the oxygen. Especially since it seems that just about EVERYTHING else is contraindicated during pregnancy. :(

Hey MackLogan,

There are a number of recent studies about the benefits of taking supplemental vitamin D3 during pregnancy...  The suggested dose is 6,000 to 7,000 IU/day vitamin D3 for otherwise healthy pregnancies.  Others suggest 10,000 IU/day for healthy adults including during pregnancy.

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

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

My daughter has taken the complete anti-inflammatory regimen with 10,000 IU/day vitamin D3 for the last 5 years and continued taking it during a recent pregnancy.  She kept her OB in the loop about this regimen throughout her pregnancy. 

Her OB was a little concerned at first with the 10,000 IU/day dose of vitamin D3 so my daughter asked him for labs of her serum 25(OH)D, total calcium and PTH (Parathyroid Hormone) per the protocol.  By the third set of labs in three months with all results in the green (within their normal reference ranges), her OB became more interested.

Her pregnancy and delivery were flawless so her OB now suggests this regimen to all his patients. 

When my daughter took Fred to a pediatrician, his first comment was Fred will need supplemental vitamin D3 while breast feeding... 

My daughter was prepared for the visit and brought along copies of her lab data indicating her serum 25(OH)D was 79 ng/mL, total calcium within its normal reference range and PTH at the low end of its scale...  Then she told the pediatrician she was taking 10,000 IU/day vitamin D3 plus all the vitamin D3 co-factors...  All he could say was "Wow... That's wonderful... Keep it up."

Bottom line, taking vitamin D3 as a CH preventative and oxygen therapy as an abortive work just fine and are very safe during pregnancy.

Take care and please keep us posted

V/R, Batch