Hi everyone,

I have been getting clusters since the great age of 15 and now I am 30. Right now I get about 4 sets a year for 2 weeks a set with the peak being around 4 to 5 a day.

Anyways I am expecting my second and child and am now on a second set during my pregnancy, I am 28 weeks. It means I am just not functioning.  :'( I feel awful for my family because I get upset so easily hormones mixed with clusters are making life hell.

My biggest issue is my new GP. When I told her I had cluster headaches she asked what I took for them. I said I was not treated, and had nothing to take. Her response was "Well they must not be that bad then". So, I have been looking for a new doctor but it is hard to find one. I do have a OBGYN and have not asked her about them yet.

This set has been really bad. I am wondering if any of you have ever had a walk in doctor prescribe oxygen? I have never tried oxygen but at this time I think it is my best bet.

Let me know

Thanks

I had a nurse practitioner handle my oxygen prescription so yes it can be done.

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Review this link, print out the supporting details. The critical points are high flow, at least 15 LPM, a Non Re Breather Mask, started at the first sign of an attack. Good luck, be pushy, if they say no ask to speak to someone else. This is one time where you cannot sit back on your heels and rely on a doctor to help you, our condition is just not well known yet.

Joe

Hi, can I ask you how far along you are in your pregnancy? When I was pregnant (with my 2nd as well) I was put on prednisone. the HA's were unrelenting in my 2nd trimester. Then, miraculously in my 3rd trimester, the prednisone started working (or maybe the HA's stopped on their own, I'm not sure). I took prednisone for my entire pregnancy. I also had nerve block injections & was hospitalized with a steroid IV during that 2nd trimester. They told me that prednisone was probably the safest option for me & my son, since there was no risk of birth defects. Its not ideal, but we do have to be able to function. I was able to stay at 30mg a day for the rest of my pregnancy. I looked absolutely ridiculous with a pumpkin head and a huge belly, but I'm pretty sure I would have miscarried if things hadn't gotten better, I was consatantly throwing up from pain & ended up with a uterine tear & had to stay on bedrest for the duration. I hope it gets better for you soon.   

Oh, I'm sorry, I just saw you are at 28 weeks. Thats about the time I started to feel good. I hope its the same for you soon  :)

Hey Aura,

A good GP/PCP should be willing to prescribe oxygen therapy at 15 liters/minute for your CH even during pregnancy.  It's the least invasive abortive with no side effects.  It costs less per abort and it's also the most effective.

What you really need is to see your OB and have the lab test for 25(OH)D, the serum level metabolite of vitamin D3. 

Odds are you are vitamin D3 deficient...  Keeping your vitamin D3 level up during pregnancy is very important for both you and the baby...  It's all snug, warm, and getting plenty of food...  It even has cable...  But no sunlight and if you're not getting any...  your baby is also vitamin D3 deficient.

The typical prenatal vitamin regimen most OB's prescribe during pregnancy contains only 400 IU/day vitamin D3...  That's nowhere near enough...

See the following links:

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WebMd cites a study in the following link recommending a minimum of 4000 IU/day vitamin D3 during pregnancy...

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The important thing to remember is it isn't the dose that's important but rather the serum concentration of 25(OH)D...  The normal reference range for 25(OH)D is 30-100 ng/mL.  Most CH'ers start going pain free at a 25(OH)D concentration of 60 ng/mL... 

As long as you are being tested for 25(OH)D, you can take 10,000 IU/day until you reach mid point in the reference range or 60 ng/mL, then drop back to a vitamin D3 dose of 4,000-5,000 IU/day.  That concentration of 25(OH)D should help prevent your CH as well as keep you and the baby very healthy.

Take care and please keep us posted on your 25(OH)D lab test results.

V/R, Batch

Thanks for the advice everyone.

I went a walk in today MD today and he refused to prescribe oxygen. SO maybe I will try another or see if I can get in with my Obgyn sooner then my scheduled appointment. I never thought about or heard about vitamin D deficiency. I will have to look into it.

I am glad everything worked out for you Areil. I guess I keep doctor shopping....

Thanks again

aura wrote on Apr 28^th, 2012 at 8:49am:

Hi everyone, ...I am 28 weeks.... This set has been really bad. I am wondering if any of you have ever had a walk in doctor prescribe oxygen? I have never tried oxygen but at this time I think it is my best bet.

Hi Aura,

I am also pregnant with Clusters. I consulted my neurologist - top CH specialist in a few countries - beforehand. He specifically told me that I could use Oxygen for the first two trimesters of pregnancy, BUT NOT FOR THE THIRD. He told me that it affected the pressure around the eyes/ eye sockets of the baby if we use high flow O2 late term, if I recall correctly. He told me that if I was having clusters in the third trimester, I would have to weigh risks vs. benefits of taking Imitrex or another alternative at that point (a few of the risks being raised BP, pain, stress on fetus, etc.).

Please be careful, as I noticed you have entered your third trimester. I know not many docs, even neurologists know much about cluster headaches or oxygen. I hope your cycle subsides, and you get some relief.

Val