Jump to content

Pregnant and new CH episode


Cmwlondry
 Share

Recommended Posts

Hi all! I just found this site!! I have suffered from episodic clusters since I was 12 (now 33), and my prior episode was in 2014 when I *FINALLY* received my diagnosis by a headache specialist. About 6-7 weeks ago, a new attack set in - I’m now 13 weeks pregnant with our second baby. I weaseled my way in to a local neurologist (actually a headache specialist who works specifically with pregnant women), and we revised my treatment plan (now using a combo of O2 (which stopped working for me after two days), sumatriptan (6mg injection & 25 mg oral), Rizatriptan, Cambia, Magnesium and have already completed two rounds of Methylpred). I am still having 2-6 headaches a night... and am hardly getting any sleep. I stay at home with our one year old, and would love to “nap when she naps” but that triggers a midday attack - I am just really struggling to see the light at the end of the tunnel. I would love any guidance on meds or reassurance that my baby is going to be okay. Thank you in advance!

Catherine

Link to comment
Share on other sites

My gosh, that's a whole lot of powerful stuff you're taking.  You have a headache doctor who specializes in working with pregnant women, so I am very reluctant to overstate anything.  And you don't say how often you are using the various abortives and possible preventives, so I can only tell you some things we might say to someone on those meds.

1. Most people with CH don't need 6mg of sumatriptan to stop an attack.  2mg is usually enough; I would say that for sure 3mg is enough 90-plus percent of the time.  There are ways to get to 2 or 3mg.  One is to take apart the 6mg injector.  doses.  https://clusterbusters.org/forums/topic/2446-extending-imitrex/  Others are to use the 3 or 4mg injector for migraine, whose name I always forget, or to get vials and syringes prescribed and measure your own. The less of this you take, the better off you are (more on this below).

2. Here's what the Mayo Clinic says about rizatriptan (Maxalt): "Rizatriptan is used to treat acute migraine headaches in adults and children 6 years of age and older. It is not used to prevent migraine headaches and is not used for cluster headaches."  I think some people have had relief from CH with this drug, but it isn't first line.

3. Here's what a neutral website says about Cambia: "Cambia is used to treat a migraine headache attacks, with or without aura, in adults 18 years of age and older. It is not used to prevent migraine headaches. Do not use Cambia to treat a cluster headache."  https://www.drugs.com/cambia.html  I guess I'd at least want to ask the doc about this and the Maxalt. 

4. Depending on how often you are using them, you seem to be taking a whole lot of triptans (including the pills), and (again, depending on how often you are using them) it wouldn't be surprising to me if you're having more and worse attacks from triptan overuse.

5. If you're having any kind of overuse condition -- plus: two cycles of steroids (methylpred) in how long? one a year is recommended -- that could help explain why the O2 isn't working.

6. It would be good to know more about your O2 setup.  There are other possible explanations for it working/not working. What size and number tanks of O2 do you have?  How high does your regulator go?  Are you sure you have a non-rebreather mask?

7. You should very seriously consider Batch's vitamin d3 regimen, which has helped hundreds. With regard to helping people with the regimen, his generosity is exceptional.  I'm sure he will have considered its application with women who are pregnant. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people

8. I'd suggest you might look over this file. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

9. For all practical purposes, I don't see a real preventive in your list of meds. (Typically, that would be something like verapamil.) Your doctor might see some of what you are taking as preventives, and there might be reasons not to prescribe other ones.  The d3 regimen is a very effective preventive, but it takes time to reach full effectiveness.

 

Edited by CHfather
Link to comment
Share on other sites

Ahhh so interesting! I was prescribed the Maxalt and Cambia with my last episode in 2014 from my original Neuro, so I had requested it as an option to the consortium of other drugs I’ve been using. I wonder if the research has changed since then? Almost every night for the past 2-3 weeks, I have been using the Maxalt and O2, but will stop the Maxalt now!! For the monsters, if I haven’t taken any other meds that day, I’ve used the sumatriptan injection - good to know on reducing the dose, will definitely look in to that! I used one Methylpred 4mg pack at the end of December and it broke up the beginning of the cluster, only for  it to resurface in Mid-Feb, so at the beginning of March I started another Methylpred 4mg pack. My doc did just write me a script for 8mg methylpred pack and for verapamil because of how badly I’ve been struggling. I think you’re right though probably taking too many competing medications which could be exacerbating the episode... that said, I think I may just take a few days and go back to my old heat pack fix and hold off on the steroid pack and stick with the sumatriptan and give the O2 another shot - verapamil will be my last resort in a few more weeks as it has been shown to cause a higher risk of neonatal seizures. I’ve been using 2000L tanks and alternate the regulator between 15 & 10 LPM... am I doing that right? Will also look in to the D3 regimen!! Thank you SO MUCH for all of this information - you have been a great help! Please let me know if you’ve got any other tips based on the additional information I provided below - I’ll admit and it’s probably obvious in my original post that I’m a novice at actually treating them - I’ve had them so long and just always deemed them untreatable. Thanks again,

Catherine

Link to comment
Share on other sites

I don't know a lot about methlypred, so I can only say that those dosages sound low, and I feel certain they're much too frequent. Here's what one expert says about dosage and use: "Corticosteroids in the form of prednisone 1 mg/Kg up to 60 mg for four days tapering the dose over
three weeks is a well accepted short-term preventive approach. It often stops the cluster period, and should be used no more than once a year to avoid aseptic necrosis." https://clusterbusters.org/wp-content/uploads/2014/03/GoadsbyClusterTreatment.pd

I don't know of a medical O2 tank that is 2000 liters, but that's a big one (M size, I guess), which is good. I've written a bunch about O2 use at this file (same as I linked before), so maybe you can take a look there and see whether you have further questions. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ 10/15 lpm might be fine, or it might not be enough. Your mask might be fine (with some modifications), or you might want to try upgrading to the "Cluster O2 kit."  Your breathing strategy might be fine, or you might want to try something different. All addressed in there. I'd also note (quoting from there): "Some people have observed that for some reason when the O2 level in their tank is “low,” the O2 doesn’t work as effectively for aborting, or might not work at all. “Low” in some cases can be as much as a third of a tank remaining. Something to be aware of."  Batch has also posted data about how it can take a while at first for O2 use to become fully effective, so that might be a "normal" O2 issue you're having. Another tip for using O2 that might or might not be in there is to look down toward your feet as you use it. Don't ask me . . . but many people find that it helps.  With a proper system and techniques, you ought to be getting aborts in less than 10 minutes.

Also in that doc are some things people can do when they don't have O2. There are a bunch of them, with caffeine or energy drinks/shots the most common. Also, Benadryl, melatonin, "brain freeze," and some other possibilities.  I just don't know what you want to do with the baby in there.

I really don't know why the Maxalt and Cambia have those CH exceptions so prominently stated.  One of these days I might look into that.

You can also look things up using the search bar at the top right each page. Just a good thing to know about.

 

  • Like 2
Link to comment
Share on other sites

I was allowed Benadryl when I was pregnant.

Getting your O2 optimized will be awesome for you most likely. A bit of work to abort, but very much worth the effort! And a great way to go when pregnant. CHF has covered that well, as he is prone to do!

ATB and welcome to our community! 

  • Thanks 1
Link to comment
Share on other sites

Thank you all so much - I am actually FIVE days cluster free!!!!! After having these for so long, I know to be cautiously optimistic but I am celebrating for now... Thank you again for all of the help and guidance and I am so glad to have connected with this group to know how to better fight this battle. Just so grateful!

  • Like 3
Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
 Share

×
×
  • Create New...