k because I am 11 weeks pregnant my insurance requires that I see only my ob.  my ob knows NOTHING about ch.  Told me to lie down and take it easy the headache would go away after a nap.  I still don't know weither to cry or scream bloody murder. Well since actual murder of a doctor is not on option ::) :-*   ok so have o2 but only up to 15 lpm liquid or e tank wih a f@ck%^g 15 lpm regulator. Which does not seem to be enough to kill the size of headaches I'm currently hit with.  Cannot take triptans, dhe, Verapimal, lithum, zyprexa, no caffine, so what am I TO DO?  If anyone has a suggestion I would love to hear it. Outside of murder... ;)and if anyone know about researsh about clusterheadaches and pregnancy.  Please please please let me know, it seems that I will have to teach my ob doc about ch and preg. and so should know a little myself.  Please, if anyone can help.  The hits are coming fast and misreable and I currently and armed only with 15 lpm o2. and a disposable mask, that leaks my own co2 make into the bag for me to breath back in.  anyway thanks all who take the time to read my plea and pain free days to all.  

Tanyana wrote on Jan 30^th, 2009 at 4:35pm:

k because I am 11 weeks pregnant my insurance requires that I see only my ob.  my ob knows NOTHING about ch.  Told me to lie down and take it easy the headache would go away after a nap.  I still don't know weither to cry or scream bloody murder. Well since actual murder of a doctor is not on option ::) :-*   ok so have o2 but only up to 15 lpm liquid or e tank wih a f@ck%^g 15 lpm regulator. Which does not seem to be enough to kill the size of headaches I'm currently hit with.  Cannot take triptans, dhe, Verapimal, lithum, zyprexa, no caffine, so what am I TO DO?  If anyone has a suggestion I would love to hear it. Outside of murder... ;)and if anyone know about researsh about clusterheadaches and pregnancy.  Please please please let me know, it seems that I will have to teach my ob doc about ch and preg. and so should know a little myself.  Please, if anyone can help.  The hits are coming fast and misreable and I currently and armed only with 15 lpm o2. and a disposable mask, that leaks my own co2 make into the bag for me to breath back in.  anyway thanks all who take the time to read my plea and pain free days to all.

 Who is your insurance  provider?

    Kinder gentler potter

Hard to believe your insurance won't allow your OB to refer you to a neurologist. But even if that's the case, buy your own regulator on E-Bay - one that goes up to 25 lpm.

I have Idaho heathly connections medicaid. not to be confused with medicare. some do confuse the two.  hi potter

So sorry you have to suffer all of this whilst being pregnant.  I never had a hit during any of my pregnancies, so cannot help you with that but I can send you lots of vibes for you and baby bump.

Hang in there and stay sane

Tanya

I might be able to buy a new regulator off of ebay when my husband gets paid 2-5, but will probably have to wait until 2-20.  As, the fifth check always goes to rent and elc. and gas for the car until next payday.  is there any other way to get increased flow with out changing the 15lpm regulator? or the way the resivor bag holds and recievers o2?

Tanyana wrote on Jan 30^th, 2009 at 4:49pm:

is there any other way to get increased flow with out changing the 15lpm regulator? or the way the resivor bag holds and recievers o2?

Don't know. Sounds a bit on the dangerous side to me.

Brew wrote on Jan 30^th, 2009 at 4:53pm:

Tanyana wrote on Jan 30th, 2009 at 4:49pm: is there any other way to get increased flow with out changing the 15lpm regulator? or the way the resivor bag holds and recievers o2? Don't know. Sounds a bit on the dangerous side to me.

I know playing with o2 is dangerous. Don't plan on blowing anything up. Just looking for things I could be doing besides rolling over and playing dead. Thank you for your concern, brew. My husband said the same thing.

Tanyana,

Check your PM's.  I can help.

Chuck

Tanyana,
I wish I had better advice for you however what I do when O2 or meds are not available is to simply put a moist wash towel in the microwave for 20 seconds (depends on the size of the towel) and when it is barable (if it comes out too hot, I swirl it in the air a bit to cool it down) I place it over the center of my forehead and right eye and then below my ear. If a microwave isn't available I use hot water, An ice pack seems to help as well.
Hang in there! You are soon to be blessed!

Jim  

well, i guess I can't wish harm on my ob since he himself called me to see if I was doing ok.  He belives that I am having veritgo along with my ch and preg systoms. sorry about the spelling I keep waiting for my brain to leak out off my eyes or ears.  Also, talked to Clusterchuck and he maybe able to help me with a mask and regulator. no blowing up the house now ;) ;) to bad because that would have brightened up the whole neighborhood!! [smiley=bomb.gif]  No in all seriousness this site never falls to be there when one of us clusterheads or supporters need a friend.   For those who use coffee to help fight the beast, when is the best time to drink it, how- fast or slow, ahd how much. My ob oked 3 cups a day and said no to energy drinks. my head is winning for now,, will check in later. thanks all, i'm outta here for now.

I'm at a bit of a loss here.  Are you saying that they won't let you get health care of any other kind?  Do you have a primary care physician?  Can you get him to refer you to a neuro?  And that in itself is not necessarily a miraculous answer (as many here can attest to).

Would your ob be willing to contact one of the headache clinics and get advice on treatment?  

Print the information off this website and take it to your doc.  You may have to do a lot of your own research and take it to your ob.  Have you thought about trying to e-mail one of the clinics and explaining your plight?    

I know I'm jumping all over the place and from one subject to the next, but I have severe brain drain right now and I'm doing really good to string together words and make a coherent sentences (I almost said, "make sense", but that's not possible at any time  ;)).

As a last resort, pm E-double and ask him to talk to his sister, Rori, she has clusters too and her littlest boy isn't that old.

Carolyn

For those wondering, here is the info on her insurance.

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

It says that you might be able to get a referral though, I'd call them and ask. They make this crap incredibly confusing.

"What happens if I go to a doctor who is not the one I signed up with through Healthy Connections?
The doctor may refuse to treat you without having a referral from your regular Healthy Connections doctor. If you do receive treatment, you may be billed for that treatment. If you want to see a doctor other than your regular Healthy Connections doctor, call Healthy Connections first and ask to change doctors. "

So, she may literally have to change doctors to see a neurologist.

Honestly, I'd call them up and ask them if there is ANY way around this, because it makes no sense to limit care like that when a person has more than one issue. It may be able to be fought.

I asked my ob about a referral and he said that he does not approve and will not give the refferal during THIS pregnancy as there is nothing that the nero can do for me.  This pregnancy is a high risk pregnancy and my ob is a specialist in high risk pregnancies. Even though the reality of it all blows, I would probably be risking my baby life if I switched doctors. In the wash, the baby is more important. My ob knows nothing about cluster headaches, but a lot about babies. He said that any natural remenidy that I want to try he will listen too, and he is not against me bring in information or bring him a speciliast phone number etc.  I had a long talk with him late this afternoon. I still don't know what to do and am on my fifth kip 6 of the day With all of the pm, responses and emails, I am no longer panicin and am ready to rearm and fight the beast.  or.. rather trying to convice myself that I am.  
Thank you, Tanyana

Tanyana wrote on Jan 31^st, 2009 at 12:25am:

I asked my ob about a referral and he said that he does not approve and will not give the refferal during THIS pregnancy as there is nothing that the nero can do for me.  This pregnancy is a high risk pregnancy and my ob is a specialist in high risk pregnancies. Even though the reality of it all blows, I would probably be risking my baby life if I switched doctors. In the wash, the baby is more important. My ob knows nothing about cluster headaches, but a lot about babies. He said that any natural remenidy that I want to try he will listen too, and he is not against me bring in information or bring him a speciliast phone number etc.  I had a long talk with him late this afternoon. I still don't know what to do and am on my fifth kip 6 of the day With all of the pm, responses and emails, I am no longer panicin and am ready to rearm and fight the beast.  or.. rather trying to convice myself that I am.   Thank you, Tanyana

I'll keep you in my thoughts and prayers, I do understand that the baby is more important. It's a hard situation to be in. :/ The only thing I could think of would be steroids, but if you're high risk, I don't know if that's an option for you. That or nerve block, but I don't know if that would be risky or not, again...

ETA: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Some info on cluster headaches and pregnancy, like I said, I don't know if it'd work in high risk ones...

Good luck, and PFDAN
Mystina

 Hi Tanyana . . . sorry the beast is giving you such a rough time.

 I'm sure Chuck is handling the 02 issue and hope it will prove effective SOON for you.

 Since your ob is against all our favorite preventatives . . . ask him about water treatment (see "water X 3" . . . link on left).  It's NOT easy to do, but as you seem to have no other options . . . might be worth trying.  

 Water has been my preventative for over four years now.  When I came here (2/02), it was Verapamil and 02 that gave me my life back.  At the time, my wife (who found the site for me) tried to get me to try the water route, but I really didn't consider it and opted for the scripted meds . . . which did work and I had some control over the beast.    Well, in 2/04 I had surgery for bladder cancer (after a year of other surgical procedures/treatments), and they removed my bladder & prostate (I had a wonderful surgeon, new nerve-sparing procedure . . . and NO stoma) . . . lymph nodes were positive for cancer, so scheduled chemo.  Now during all this, I was taking the Verapamil and always had my 02 handy which kept the beast at a manageable level.  During the recovery period and before the start of my chemo, my attacks lessened in frequency/intensity.  Right before the chemo, I stopped the Verap altogether as my BP was uncomfortably low (also stopped some other meds just to lessen the number of chemicals in my body in preparation for the chemo).  Well . . . the attacks remained infrequent and low-level . . . most easily handled with the 02 . . .  had one Kip 9-10 (triggered by a beer . . . had gotten a bit cocky with several PF days), and the rest were all low-level hits  Kip 6 and under.  I thought it might have been the chemo "juices" . . . started a thread about same  . . . nope.   To make an already long story a bit shorter . . . the only constant since my major surgery was water.  I was/am required to consume large quantities of water to keep my neo-bladder and kidneys flushed to prevent UTIs (had at least six the first year . . . one in the last year).  In addition, if I slack-up on water intake . . . I get hit.  If I drastically reduce water intake . . . get slammed and can set off a series of attacks.  

 I do take a multi-vitamin and other supplements (B-12, calcium, potassium), and you definitely want to talk to your doc if you're going to try this . . . especially with the baby-on-board.  It shouldn't do any harm . . . might help reduce the frequency/intensity of the hits . . . the price is right.

 Sending positive vibes your way.

   Be Safe,   PFDANs

      Richard

Pixie-elf wrote on Jan 31^st, 2009 at 12:33am:

Tanyana wrote on Jan 31st, 2009 at 12:25am: I asked my ob about a referral and he said that he does not approve and will not give the refferal during THIS pregnancy as there is nothing that the nero can do for me.  This pregnancy is a high risk pregnancy and my ob is a specialist in high risk pregnancies. Even though the reality of it all blows, I would probably be risking my baby life if I switched doctors. In the wash, the baby is more important. My ob knows nothing about cluster headaches, but a lot about babies. He said that any natural remenidy that I want to try he will listen too, and he is not against me bring in information or bring him a speciliast phone number etc.  I had a long talk with him late this afternoon. I still don't know what to do and am on my fifth kip 6 of the day With all of the pm, responses and emails, I am no longer panicin and am ready to rearm and fight the beast.  or.. rather trying to convice myself that I am.   Thank you, Tanyana I'll keep you in my thoughts and prayers, I do understand that the baby is more important. It's a hard situation to be in. :/ The only thing I could think of would be steroids, but if you're high risk, I don't know if that's an option for you. That or nerve block, but I don't know if that would be risky or not, again... ETA: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Some info on cluster headaches and pregnancy, like I said, I don't know if it'd work in high risk ones... Good luck, and PFDAN Mystina

Good morning chers. 4am here and head says to get up. Mysina thank you for youpost. I havn't figured out how to quote only a part of the post yet... so ended up quoting the whole post. Umm, the steriods is not an option for me even when not pregnant- messes with my heart rythums. The nerve block seems like a possibility. The question being can  you have blocks on both sides (hits are on both sides since the pregnancy started).  The information that I have read on nerve blocks is that they can be performed in cases where the head is bilateral. Has this changed? Maybe, the ob is wrong and there is something that the neruro can do.
I also would like Bob_Johnson for posting the info in the link that Mystina provided. I have printed it out and will take it to my dr.
 

Tanyana wrote on Jan 31^st, 2009 at 12:25am:

I asked my ob about a referral and he said that he does not approve and will not give the refferal during THIS pregnancy as there is nothing that the nero can do for me.  This pregnancy is a high risk pregnancy and my ob is a specialist in high risk pregnancies. Even though the reality of it all blows, I would probably be risking my baby life if I switched doctors. In the wash, the baby is more important. My ob knows nothing about cluster headaches, but a lot about babies. He said that any natural remenidy that I want to try he will listen too, and he is not against me bring in information or bring him a speciliast phone number etc.  I had a long talk with him late this afternoon. I still don't know what to do and am on my fifth kip 6 of the day With all of the pm, responses and emails, I am no longer panicin and am ready to rearm and fight the beast.  or.. rather trying to convice myself that I am.   Thank you, Tanyana

You're not asking to switch doctors, you're asking for a referral to a neuro so your neuro and ob doc can work together to help you through this pregnancy/cluster headaches.

If it were me, I'd start be researching all the headache clinics and e-mailing every one of them, explain your situation and ask for their assistance.

TBH, having clusters at that frequency/rate isn't real helpful to you or the baby.  The headaches themselves are creating undue stress on your body.

Mind if I ask why your pregnancy is high risk?  

 I just got off the phone with Patty(Tanyana) and she wanted me to tell every one her computer is down, so she wont be able to respond to any pms or post for a while.
      Phil 8-)