New to CH, 36 weeks pregnant

[Kellylynne22]

Hello, I just joined. I am 36 weeks pregnant and have had "classic" migraines of most of my life. About 11-12 days ago I got my first cluster, and it's been every single night since then. These things make regular migraines look like "kid headaches". The pain is unbelievable. Always wakes me up from sleep, always occurs between 10 p.m. and 6 a.m. They peak within 15 minutes and are not usually fully gone for 2-3 hours, with the most painful part lasting around 30 mins. Everything about it fits the exact description of CH. including the location along the left side of my head, primarily behind the eye, around the jaw, temple etc.

 

I have found one person on a pregnancy forum who had this develop around the same time in pregnancy as I have, and it went away when her baby was born. I hope to god that happens to me, but I'm very scared. Because I'm nearly full term, my Dr felt it was safe for me to try 4mg imitrex injections, of which i'm going to try for the first time tonight. (I've taken imitrex pills in the past for my "regular" migraines while not pregnant, and they always worked, but tonight will be my first time with the injections.) She also prescribed a 5 day course of steroids - dexamethasone - which does have some concerns in 1st trimester, but for this far along she feels it's completely safe. I'm of course very nervous, but going on 12 days in a row of a cluster headache every single night - well the pain, lack of sleep, and stress can't be good for the baby either. I have to give this a try.

 

My question is, I know that generally both of these drugs have a history of being more of a "crutch" than a cure - but do either of them ever break the cycle? I really can't imagine going four more weeks like this. I am afraid with imitrex it will stop the cluster tonight, but since mine are daily - will I just get it again tomorrow? I'm not going to feel comfortable taking imitrex every single day, that's for sure. Same with the steroids - I know for most they don't, but does anyone ever report of steroids breaking a cycle?? I guess i'm just looking for some hope at this point. This is all coming from my OB - It's a very long wait to see a neurologist, and I need something to help me manage the pain and get my baby here safely sometime in the next four weeks. I will be seeing a neuro and getting an MRI whenever this super long wait to do so is up. 

[CHfather]

I'm not an expert in CH and pregnancy, but I would assume that you want OXYGEN, the #1, side-effect-free CH abortive.  From a tank, with a 15 liter per minute regulator and a non-rebreather mask.  You can read about that here -- https://clusterbusters.org/oxygen-information/-- or ask more questions.  Since your doctor must have looked up the Trex and the steroids, she should have seen O2 right there.  It's standard recommended medical practice, but many many dpctors don't follow it. I think that's because they don't prescribe O2 for any other conditions and are unfamiliar with it (even to the point of not knowing how to prescribe it).

Almost everyone with CH can abort with 2mg of injected sumatriptan.  I don't know what your delivery method is, since I think most self-injectors are 6mg, but if you can take 2 or 3mg instead of 4, you're almost guaranteed to abort the attack wile using less of the drug.

Trex will not break your cycle.  There's even some evidence that it might extend it.  But it will give you relief from the pain.  Steroids very rarely break a cycle -- usually they're meant to give you relief while a preventive med, such as Verapamil, kicks in.  Don't know about Verapamil and pregnancy.  It also won't generally stop a cycle that's underway, but sometimes it can be effective as a preventive.

 

The most effective way to stop and cycle and potentially prevent future ones is through busting (using psychedelic substances), which I'm going to assume you don't want to do.  The other principal method for stopping a cycle and preventing future ones is the vitamin D3 regimen, which you can read about here: https://clusterbusters.org/forums/topic/1308-d3-regimen/   Melatonin at night helps many.  Energy shots/energy drinks can stop an attack or significantly reduce its severity.  I have no idea whether any of those are okay given your status.  Some people find that putting their feet in very hot water in a bathtub will stop an attack or reduce its severity.  Again, no idea whether that would be a bad idea for you . . . just throwing out what I have.

 

You should probably check your triggers: https://clusterbusters.org/forums/topic/4568-triggers/

And you could read this thorough discussion from a CH hero, Bob Wold.

Finally, consider joining a couple of other discussion sites where you might encounter someone who's been through what you're going through:  www.clusterheadaches.com and the Facebook group, "Cluster headaches." That's a closed group, but I think you can gain admission quickly and easily.

[Kellylynne22]

My dr and I are both aware of oxygen. It is not an option with my insurance. After scrolling through pages and pages of posts before writing this, I am aware that for "most" people none of these drugs can stop a cycle but I was hoping to find that for some people they can...I guess what I'm most confused about as I am new to these, is why even bother with meds at all if you have true cluster headaches, they are going to keep coming back every single night no matter what? Maybe coming from a long long history of traditional 3-5 day migraines where if you break the cycle with meds they will leave, gives me a different perspective. These are indeed far more painful but they last 3 hrs out of a 24 hr day. What's the point in taking anything if it's just going to come back anyway?

No mushrooms or LSD def not an option.

I don't understand how triggers can play a part either woth true classic CH like this. For example I change what I eat every day, avoiding what they say are classic triggers, nothing has put a dent in getting these literally every single night for 12 nights at the same time. Not even a night off. That tells me nothing is triggering this specifically. It's not like classic migraines at all.

[spiny]

While steroids will not break a cycle, they can give you a few days of pain free living. Generally, as your daily dose is reduced the CH will return. Steroids are usually used as a 'bridging' medication to provide relief while a preventative such as Verapamil builds up in your system.

 

I would definitely discuss the D3 Regimen with your OB and see if it is acceptable. Vitamins. Just vitamins. This regimen has helped many avoid a cycle or stop one. I would not think that the vitamins are contraindicated during pregnancy.

[Kellylynne22]

Thanks I may have my dr test my d3, but I have been taking d3 and the added d3 that's in my prenatal, not to mention I've been in the sun daily all summer. I would be completely shocked if my clusters had anything at all to do with a D deficiency.

[CHfather]

Many people have been shocked to discover that their D level is low, or at least lower than it needs to be to combat CH.  The D3 regimen has been effective at preventing or reducing the severity of CH is a very large percentage of people (reportedly >80%) who have employed it.  D level is part of most standard blood panels. While a level above 30 ng/ml is considered "within range," the extensive evidence shows that about 80 ng/ml is required to treat CH (that is still within the "normal" range, which goes to 100 ng/ml).  Standard supplements and even a lot of sunshine are not likely to get you there.

 

Your situation is really, really crappy.  It could be that you won't experience CH again after you deliver your child.  That would be wonderful.  No one can tell you a doggone thing with certainty about CH and its treatment, except that there is no available miracle cure, there are only ways to more effectively manage the pain. I feel like I can sense your despair in your posts here, but of course there is a point in turning three hours of suffering into ten or fifteen minutes, even if the attacks are going to come back again, and there is a point in trying preventives like the D3 regimen or pharmaceutical drugs that could keep the attacks from coming back or at least make them less bad if they do.

 

I can't tell exactly what you mean when you say oxygen "is not an option with my insurance," but I can tell you again that oxygen is the best, side-effect-free treatment for CH, a true lifesaver for those who use it.  Maybe you're saying your insurance won't cover it, or maybe you're saying that it seems too expensive with your insurance.  Different decisions and strategies would be involved depending on what it is (or seems to be -- lots of people have found that they have to fight with their insurance companies but the coverage is actually there).  There is also the option that many people use (at least 15% of people with CH; probably more), which is to use welding oxygen as the basis for your O2 system.  If you want any further discussion of any of this, just ask. 

 

I'm persisting because I know the huge difference that O2 and the D3 regimen often make, but I will persist no more, unless you ask.  I see that I failed to provide a link to Bob Wold's document, which you might have seen on your own in any event  Here's that: https://clusterbusters.org/forums/topic/4567-bobs-big-pocket-guide-to-cluster-headaches/

[Kellylynne22]

I had my D levels tested about 8 months ago. 10 and under is deficient and doctors generally look for 25 and up as a normal range. I was at 15 at the time, so I took supplements. The levels listed in your document are not safe for pregnancy, those levels are nearing toxicity. I'm sure they won't harm someone who isn't pregnant, but the potential is there - or they just have really expensive pee, because that's where all that extra goes. I really appreciate all the advice and I get the urge to turn to alternative medicines when nothing else works. That being said I will ask my dr to test my D levels again just in case something crazy has happened and I'm at some kind of dangerously low level - but again, I highly doubt it. I tend to gravitate towards science and medicine for things like this, and am very skeptical about vitamins which don't have a lot of hard science behind them. But in glad it works for some people. As far as oxygen, it is way, way too expensive for me to afford. I did read over the documents here about how to talk to your doctor about ordering it and the ways you might be able to get it cheaper- and I may go that route, but last week I was in the hospital getting a procedure done, while experiencing a cluster at the same time, and I was on oxygen for 30 mins and it did nothing for me. Anyway, thanks for your time. I will still keep these suggestions in the back of my mind. I am now having classic migraines and tension headaches in between the clusters during the day and am pretty miserable, so I'm still open to at least seeing what can be done if no improvements soon.

[urielkramer]

Kudzu 81mg, 3 times a day + half red-bull at first signs of pain. helped me reduce both attack-lengths and pain level by 80%.

Never think any negative thought under an attack - it increases the pain, and you don't want to increase the pain. Be strict with you thoughts because under an attack - they are useless and meaningless, this has been a life lesson for me in self mind-control. 

hope your pain goes away forever starting tonight.

[Kellylynne22]

Thanks...what is Kudzu? I don't really feel comfortable taking red bull pregnant, but I do drink a can of Coke here and there for the regular migraines, I will try that with the CH and see if it makes a difference

[CHfather]

I said I wouldn't persist. I shouldn't.  Very sorry that I am surely overdoing it, but I would rather have you think me obnoxious than have you miss effective treatments because of misinformation.

Standard report format for vitamin D test (copied from mine, from a leading medical center):

Suggestive of Deficiency: <20 ng/mL
Suggestive of Insufficiency: 21-29 ng/mL
Suggestive of Sufficiency: 30-100 ng/mL
Suggestive of Toxicity: >150 ng/mL

 

You might be right about the risk of higher D levels during pregnancy.  Literally hundreds of people (carefully researched) with CH will tell you, however, that your general assertions about acceptable and toxic D levels are incorrect and are leading you away from what could be a valuable tool for you, should you need it.

 

The oxygen that was administered to you in hospital was almost surely done wrong.  It almost always is.

 

Finished now, I promise. Wishing you the very best.

[Kellylynne22]

See, the thing is, I feel more comfortable trusting the advice on levels and what is deficient from my actual Doctor than the data you have from "a leading medical center". With actual sources I'd be more interested. What leading medical center? Where does this info come from? This website has a lot of very useful info but you guys often cite other users as supplying your info, which to me is just like any old person posting stuff they made up. I base my decisions on medical journals and actual data from my doctors. Not trying to be a jerk or anything, I do appreciate it. I just need real sources to take this stuff seriously.

[CHfather]

Northwestern University Medical Center good enough (https://www.nm.org/)?%C2'> It is from my actual blood test report, which I receive online.

 

Believe me, if medical science had great answers for treating CH, we would not hanging out here. I don't have CH; my daughter does.  I could list the 10 medications she has tried.  I'm not here for play.  I have read and evaluated every single post here for the last six years.  That's a whole lot of posts.  I have read virtually every journal report on every medication or procedure to treat CH. I'm not stupid or gullible.  I hope you never have to learn how the information here saves lives.  I hope that starting sometime in the very near future you will never again even have to think about CH.

[spiny]

Kelly,

 

Where are you located? You are quoting a different measurement of D from what is used in the US. Here it is measured as ng/ml and the range is 30-100. Europeans use a different standard of measure and different levels based on their unit of measure.  Apples to apples comparison is not going on here. What unit of measure is quoted when stating that normal is 25? 25 what?

[Pebblesthecorgi]

Sorry you are getting hit at what should be an exciting happy time. Too much to do getting ready for the blessed event. I didn't catch if this was your first pg but it sounds like it's your first cluster. Pregnancy is an evolving moving metabolic state and as your third trimester advances be sure to keep a close eye on your blood pressure. There's not Much data on trex in pg but it is largely regarded as safe. Birth defect issues are almost always a first 10 week thing. Now blood pressure is what needs monitoring. Spend time on your left side for a while after injection, that will optimize blood flow to the placenta. Remember BP in PG is usually lower so a high normal reading is abnormal in pregnancy. Your doctor knows this and will routinely monitor pressures over the next month. Trust and communicate with your doc

Usually PG is a state of vasodilation and pregnancy hormone levels are responsible for that which makes your situation worthy of close monitoring.

Steroids are completely safe in pregnancy and certain versions are routinely used in relatively high doses to promote fetal lung maturation. Again, monitor BP. Obviously staying in close contact with your doc will be important and you need to trust that person to help Shepard the pregnancy.

The O2 thing defines stupidity. Ask your doctor to print out the recommendations in an on line resource called up to date. O2 has level A evidence (the best) of being effective. Recruit one of the OB office nurses to help you crusade for coverage. If it moves too slow see if the hospital or ER has a system for making it available in house. Your doc could brief the ER about what's going on or make arrangements for you to get O2 as an outpatient in labor and delivery. Just make sure they know about high flow and non rebreather masks. Whatever it takes to at least give it a real try. Remember pregnancy changes your respiratory picture so breath deep and hyperventilate to clear the CO2. Persistence should win that battle and if your region is that backwards look around for a civilized part of the world. Sorry about the rant. But the whole thing pisses me off.

I strongly recommend avoiding all "alternative treatments" fetal brains are incredibly plastic and I suspect many of those molecules will cross the placenta and there is no telling the long term affects on the kid later in life. Studies show it doesn't take much of certain things to create subtle changes long term.

Your doc may have your see a Perinatologist (high risk pg sp;ecialist) for an opinion and that's ok. Second op;unions are good.

Vit D probably won't hurt but my guess you will clear it quickly in a hypermetabolic state and you don't have much time left before its time to welcome a new life into your world.

Good luck, stay positive, be persistent and remember to maintain a good sense of self. Things work out and establishing an inner calm is important.

[Pebblesthecorgi]

Imitrex was recently reassigned to category B risk in pregnancy.  It seems the placenta can handle just about anything vasoactive.

 

 

Category Risk Category A The safest drugs to take during pregnancy. No known adverse reactions. Category B No risks have been found in humans. Category C Not enough research has been done to determine if these drugs are safe. Category D Adverse reactions have been found in humans.

[Kellylynne22]

Just wanted to update on this thread, I was on Decadron for five days which ended on Monday. It is now Friday and I have not had a single cluster headache. It appears I am the exception to what most people here believe, which is that steroids can't break a cycle. Of course I know it could come back at any time, but I wanted to update to give hope to any other new members who come here for advice and are told what I was - which is that it would not work. Well, it did work.

As far as vitamin D levels are concerned, I had mine tested and as I suspected, being outside all summer and taking a prenatal vitamin has kept me at completely normal levels. I won't be frequenting this board again after this post, even if my clusters do come back, unfortunately I didn't find it very helpful here. But I wish all of you luck in dealing with this very painful condition.

[CHfather]

Glad your cycle has ended.  Wishing you the best.  No point in correcting your misstatements -- the thread is here for anyone to read.

[mit12]

Kellylynn22

Sorry you are getting hits.

I use welding oxygen it cost me $26 a month to rent a 60cf bottle from Airgas. You can pick up a non-rebreather mask i believe for $35 from Clusterbusters and you can get a regulator for under $100. I was a person that tried O2 at my doctors and it did not work at all. CHfather pushed me to try it again with the proper mask and high flow regulator and it works awesome. You have came to the right place, there are some real good people on this site that will answer any question you have. Good luck

[ThatHurtsMyHead]

Kelly,

 

I'm at a bit of a loss for words.  Lots of people gave you some really great advice here that you chose not to take.  yet you sorta back hand them?  We're still glad you're getting some pain free time.  Seriously.

 

As for the steroids.  They can and sometimes do terminate cycles.  Other times the CH comes back shortly after stopping the steroids.  I didn't see in your post but hope you didn't use the imitrex?  That stuff can wreck a healthy person.  I couldn't imagine what it would do to an unborn child.  Any doctor that says it's ok for someone pregnant is a crack pot...!!!  The Vitamin D regimen has helped thousands of people with CH reduce their attacks and pain level.  That's a fact.

 

If you really have CH and it comes back, you're always welcome here.  (And the alternative treatments are SIGNIFICANTLY better on both your body and alleviating our CH than ANYTHING the doctor can script)..  That's also a fact that thousands of us with recurring or chronic CH will swear by.

 

PFW,

J

[Cor68]

I wish I read this sooner than later....My bet is, when they come back....she will be back begging for help...may be she is not experiencing cluster's at all. Anyone can tell you that, any information is useful information. VD worked for my hubby, and I thank God for this board!!!!!!!!!!!!  I am going to make a bet she will be back in a few years...

[filacibin]

lets all hope she is without cluster,i suspect she is in a denial and ignorance stage of this disorder,if she does have it!!lets hope not..

my personal experience

with prednisalone was horrendous!althrough at a very high dose it did  eventually break my cycles ,the side effects were terrible,going from 13 half stone to 20 stone in six months,brittle bones ,the list goes on far to long,my specialist took me off them 3 years ago,so with my only line of defence apart from oxygen and imatrex ,

knowing of what i had to face without prednisalone was so scary,words can not explain how scared i was" with that defence gone"!but can only say if i had not of discovered mm treatment,i do not know where i would be today!,also big thanks to you guys here,"i respect appreciated you all"!

[MikeinPA]

I'd also like to chime in here about my experience with prednisone.  2 seasons ago, my doctor put me on,and they cleared up... until it wore off completely, a few days later the beast was back.  He gave me a second prescription, I did not finish it, as the side effects were not worth the limited hope it gave me.  I rode it out and a week later they were gone. That's pretty much my last, last resort.

 

The following season (last year) I busted w/mm before the cycle started, which was nothing short of amazing(THANKYOU, CB's).  Unfortunately, this season they started 6-7 weeks early, so I was not prepared and now trying to bust them after the fact.  Anyway, I digress, but wanted to give my experience with that nasty pred. 

[filacibin]

Bastard pred has destroyed me physically and mentally!!