I Would really like to hear from some of the veteran ladies or spouses around here that have experience in this subject.

I have suffered with CH for the last 20 years. I did not have any attacks during my first pregnancy and only a couple hits in the second trimester during the second pregnancy. My CH became more consistent about two years after the  the birth of my second child in 2001. Cycles coming every spring/summer and lasting 2-4 mos.

I am currently 10 weeks pregnant and this time around it has been really tough. I have been in cycle for about 6 weeks now and it just seems to be getting worse. At first I was only getting hit with a K5 or 6 and about 2 mins. on the O2 would knock it out. My air bag busted last week and the only thing I have had to help with the pain is an ice pack. I do not have a script for O2 and I have not been able to find a medical supply company that will sell me an new 3 litre bag with out a script. >:( I finally broke down and just ordered a whole new cluster mask kit today. I do not know how successful it will be though because my ha's are climbing to a K8 now and before the bag broke, the O2 did not seem to be working so well. I do not have a high flow regulator and I have been reluctant on purchasing one because I don't want to spend the money right now and it not work.

I am getting hit almost every morning at 3am and/or at 5 with the hits usually lasting about and hour and a half. Over the last two weeks my eye on the cluster side has started to involuntarily shut and I become photo sensitive. It does not have to be completely dark, I just can not handle direct light. I have had droopy eye before but never this. Sometimes it is so bad it causes both eyes to close. I have also started to throw up with every hit. Even if there is nothing in my stomach, I will still dry heave about 8 times. Today it was to the point that I could hardly breath and I was gasping for air. I am curious if anyone else has had their clusters do weird things like this during pregnancy.

I have to say I am really scared right now. The last MRI I had was in 2005 and I was planning on having another one before I found out I was pregnant. My husband is self employed now and we just have a crappy little insurance policy that does not cover much and certainly not pregnancy. Medical bills are piling up as we were in the middle of having me checked for fibromyalgia or RA when we found out I was pregnant.

To only complicate things more, I am 37 and pregnant with twins. I am already high risk so I feel any prescription drug use is out of the question. I am currently using O2 and ice packs only, if any one knows of any other alternatives to scripts, I would love to hear them.

Like I stated before, I am really scared. Advice is greatly appreciated right now as long as it does not consist of telling me to stand on my head or of going into a dark closet and chanting "I am the happiest person in the world"

Ouch...that's a boatload to carry in addition to sweating what insurance will and won't cover. There is a thread under this one, CH and Pregnant. Skip down to the posting by Bob Johnson. He specializes in doing research on treatments. Read his posting on some of the treatments approved for women while they are pregnant. Maybe something there will work.

Keeping you in our prayers.

Joe

Some PDF files, below, which you might print out and use to discuss your options with the doc.

(These are in addition to the files, in another message, which Joe mentioned.)

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#2 of 3 PDF

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#3 of 3 PDF files

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Oh, Trooper!  My heart aches for you!!!  I'm Lettucehead from the other post about CH and pregnancy.   I'm so so sorry...  It is such a time of joy but such a time of pain as well. 

My OB and neuro have advised against almost all forms of prescription meds until at least 16-20 weeks of development to be as safe as possible for the baby.  That being said, O2 is a pregnancy category A and intranasal lidocaine is a B.  I did try the energy drink when a CH hit about 5am today and that did seem to help... 

Your CH seem to be lasting a long time like mine now - is this new for you since pregnancy?  I also feel like the O2 hasn't been working as well for me with this cycle.  I wonder if it's a pregnancy thing. 

And, please, I don't want to pry or intrude, but lack of insurance coverage for your pregnancy has to be adding to your stress.  Please check with your state health care i.e. medicaid/ Title 19.  Often pregnant women can get covered along with your newborn if you meet criteria.

Yeah Lettuce, pregnancy is one of those wobblers.  I have seen women post here that being pregnant caused them to skip a cycle, and seen others post that pregancy seemed to aggravate their cycle.

Keeping both of you in our prayers. CH sucks, CH combined with the limitations pregnancy would put on your treatment options...triple ouch.

Joe

Trooper and Lettuce
Keeping you both in my prayers
hang on in there

Nigel

Thank you, Guiseppi.
Thank you, Nigel.
Your well wishes are much appreciated...
:)

Oh, boy! You gals have it tough enough with pregnancy and delivery without having to deal with CH. And CH with no drugs! Damn! I don't know what to say except that I am so, so sorry that you have to go through this. I wish I could gather you up and fly you to the place where there's no pain until it's over, but I can't. I am so sorry. If you weren't pregnant, I'd suggest busting but there's still too much unknown about that to recommend it during pregnancy. However, when pregnancy is no longer a factor, busting is something you might want to look into.

I was wondering about melatonin, vitamin D, vitamin B2.  I know they seem so so so small, but can you add these to your supplements safely? 

I am praying (through my tears) for you with all my heart.

hello pregnant ladies!
so happy you are growing babies!
I am a mom of three boys 15, 11, and four years old.

my finest pregnancy moment was during my last pregnancy and I was in the fetal position rocking back and forth on the bathroom floor in a blanket CH in my brain and puking my guts out. FUN!

Pain totally sucks not doubt, but you will get a beautiful baby prize when you are all done! You can do it !

I had a OBGYN, a headache specialist and my head still hurt :) I had a plan to deal with the pain and sometimes it worked and sometimes it didn't.

I used lots of ice packs, lots of showers, lots of air conditioning in my face.

O2 was my first line of defense. Trooper  if your bag is broken you can tape on another plastic bag and if you need a high flow regulator just post that here and someone might be able to help you get one if you can't afford it or insurance won't pay. even a primary doc can prescribe O2.

I was also already taking B2 and Magnesium, ask your docs before you take it. (I get migraines and ice picky thingies and a bunch of other stuff too) I was also taking COq10, fish oil and IRON. Make sure your iron is in a good range.

You MUST check with your doc about this.....I Hate taking meds while preggo or nursing....And in the last trimester I took one tylenol 3 tablet on two or three  separate occasions recommended by ALL my doctors because i was out of my mind with exhaustion and benefit outweighed risk. It took my two docs, my hubby and my clusterbrotherEric to convince me to take it. If i passed out from exhaustion that helps no one. Only masked pain, but bought me the sleep. in fact i got rebound headache from it.

The narcs do not help the pain itself, but doctors know how they behave in you and the baby in your belly...and that's why they tend to prescribe them. I used it as a last resort. again a doc or two MUST be consulted.

and the best med far and away is SUPPORT!!! i'm totally serious about this. If i was having a rough day I called my clusterbrother and although he lacked ovaries he was very supportive :) and could always get me to laugh.
and I also call or would write other women from this board and that was so motivating.
We are here! let us help you!
feel free write more here or to PM me if you want
-Rori

thank you all so very much.
this is exactly the kind of help, advice, and support that I was looking for when I originally posted 'CH and pregnant.' 

Please, Trooper, if you haven't already, take a look at Bob Johnson's thread Pregnancy CH and treatments (or something similar along those lines).  I've posted my recent experience at Neuro and Perinatology and what they thought.  Also posted a summary of info from another article about CH and pregnancy. 


Please hang in there, Trooper!!!  Post, if you have a moment and let us know that you're OK...

Lettucehead wrote on Jun 16^th, 2010 at 10:37pm:

thank you all so very much. this is exactly the kind of help, advice, and support that I was looking for when I originally posted 'CH and pregnant.'

A very wise person on this board once said that, "you should take what you need, and leave the rest". 

There are good days and bad days here--just like anywhere else.   ;)

Best,

George   

Sorry it has taken me so long to update. I first want to say thank you to everyone for all of the advice and encouragement. When I posted this topic a couple of weeks ago, I was at the lowest point I think I have ever been with CH. Over the years, I have learned that the best way for me to stay positive about this disorder is to always have options. I always keep a list of new treatments or therapies to try when whatever I am currently using becomes ineffective.

It has been really scary facing the beast with no preventative options and having my fail safe trex injections off the table. O2 has been about 50% effective this time round for various reasons. To make things worse, when I posted a couple weeks ago, my air bag had busted and I went almost two weeks before I finally secured a new one. This all happening at the height of this really crazy and unpredictable cycle.

The daily onslaught of headaches have now settled into a pattern of a couple good pain free days followed by two or three days of living hell. When the bad days start I wake up with a cluster headache that lasts about twenty minutes and then it turns into something more like a classic migraine that lasts for a day or so. The longest one so far was 30 hours. I have tried O2 for this but the deep breathing makes my head throb even more and because I am throwing up now with 95% of my ha's, I am having a really hard time holding the O2 mask to my face.

As bad as all of this may sound, the good days like today, really really feel good. I am so thankful to have breaks now where at least for a few moments I can be excited about being pregnant.