Confused and out of whack

[Nutcluster]

Hi All

After a lovely 2018 remission from cluster headaches due to pregnancy, I think I’m starting a new cycle. Shortly before my pregnancy -with great difficulty-I managed to get oxygen which was sitting in my garage ready.  I have about a 95% success rate with the headache either going away straight away and not returning after 15 minutes; going away but coming back after the 15mins or going away after about 10 mins. I’m still in the early stages of the cycle but I’ve experienced 4 hits a night using oxygen alone and if I use a sumitriptan injection no other hit during the night (but sometimes in the morning) So far the hits are fairly low on the pain scale compared to what I’ve had before (perhaps because I’m breastfeeding ??) 

The lowering in pain to what I’m used to is really making me question if these are really cluster headaches or something else. If I list my symptoms below can you guys give your opinion? I also have neck pain on the same side due to position when nursing and I’m wondering if it is that causing the headaches instead. 

-attacks happen either during the night just before or during sleep or first thing in the morning (especially if the heating comes on as the stuffiness has been a trigger in the past) 

- Pain on one side comes on quickly -mainly located in temple moving down the side of the head into neck. Intense in sinus and in teeth. 

-pain sometimes starts in the neck (this is what is making me question myself) 

-blocked nose on pain side but not always.

-eye watering rarely because it doesn’t quite reach that stage of intensity. 

-oxygen/sumitriptan works regular painkillers don’t. 

-Neck hurts during the day but no headache comes. 

- pain is about 3 on the pain scale (the worst I’ve had in a cycle have been if someone had told me my arm was causing the pain I’d ask them to cut it off; worse than natural childbirth 8s-they’re usually a 6/7) 

what do you think? 

Although they are not as bad as usual it’s hard having a new baby and being woken up by headaches/being nervous to fall asleep and then being woken up by baby. I’m nervous that this is just the start of the cycle and that they are going to get worse. The last cycle Verapamil -which had been working for years-stopped being effective and due to nursing I don’t feel like experimenting with things that may/may not work. 

I just want to be certain I guess. Since I was diagnosed about 8 years ago I’ve had them under control with verapamil so it’s been a long time since I’ve really experienced the full intensity of a cycle. I usually start taking the verapamil before the cycle kicks in the the full extent. When they stopped working last time I fought for the oxygen but I was using sumitriptan exclusively to keep them at bay because it was hard work getting oxygen sorted. 

I have a doctors appointment booked to get some more sumitriptan so I don’t run out. I’d like to discuss my symptoms and re-evaluate my diagnosis but I know GPS don’t know much about Cluster Headache and I might end up going back over and coming away without the sumitriptan. 

 

If you have read read all of this thank you and I’m sorry for waffling! 

 

[CHfather]

Sounds like CH to me. Do you feel restless, like you want to move around, during an attack? (That's considered a symptom, but I know it's not definitive.)  I don't know what to say about "sometimes starts in the neck ," and I can see why that would make you wonder.  Maybe others here will chime in about whether they have similar feelings.

I would think you'd want to start the D3 regimen.  http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Most people don't need the full 6mg of sumatriptan that's in most autoinjectors to stop an attack, and at some level "overuse" of triptans is likely to cause rebound attacks.  You might be able to get the 3mg version, called Zembrace, or to get vials and syringes so you can administer your own.  You can open the autoinjector and give yourself lower doses.  https://clusterbusters.org/forums/topic/2446-extending-imitrex/   Also, many people find that if they optimize their O2 system, with a regulator that goes up to at least 25lpm and the mask made for people with CH (the "ClusterO2 Kit"), and maybe drink some strong coffee or an energy shot/drink at the first sign of an attack, they have less need for triptans.

 

[spiny]

I can say that for me, neck pain is an indication that I will be getting hit. If I get a painful neck during the day, I am going to get hit at night. At least 90+% of the time.

I second the recommendation  that you try the D3 Regimen. It is petty awesome for some CHer's and safe. Please read the link that CHFather gave you. It includes info on  taking it while pregnant or nursing as I recall. 

Congratulations on the little one!  

[Nutcluster]

Thank you for taking the time to respond. I definitely can’t just close my eyes and sleep it off and I’ve had one that got bad enough to make me feel restless. 

I agree with trying to limit medication-especially since they are milder that what I’ve been used to before. I can’t always use coffee or energy drink as I get them during the night and can’t sleep if I have a huge caffeine hit. It does seem to prevent the morning attack though but generally makes me feel a bit sick

Here in the UK we don’t have the smaller dose I don’t think. I have seen videos in the past showing how to split the injections though. I was thinking of asking about the nasal spray this time as it’s supposed to be better when breastfeeding, I wonder if that’s a lower dose too. 

[Nutcluster]

3 minutes ago, spiny said:

I can say that for me, neck pain is an indication that I will be getting hit. If I get a painful neck during the day, I am going to get hit at night. At least 90+% of the time.

I second the recommendation  that you try the D3 Regimen. It is petty awesome for some CHer's and safe. Please read the link that CHFather gave you. It includes info on  taking it while pregnant or nursing as I recall. 

Congratulations on the little one!  

Thanks. I know there is info in here about it and it might be time to give it a go. I have an old account on this and I’ve posted before in the past and read some info about it. 

Thanks for letting me in on your experience with the neck pain. I would say it’s reassuring but I suppose I would prefer that I didn’t have cluster headaches haha!  I can say it is informative instead :-) 

 

[CHfather]

I feel pretty certain that Zembrace (the 3mg triptan) is available in the UK.  However, it is authorized only for migraine (in the US, at least), because it hasn't been tested on people with CH.  So a doctor would have to prescribe if "off label" (for a use other than its evidence-based use).  Your NHS might be strict about that (I don't know).  It's a lot easier than taking apart the injectors, though, at least in my experience.

[IlyNolen]

I know this is a late reply but I started my cluster cycle a day after my son was born and it was the first time I used oxygen as an abortive technique for the attacks. Although my frequency of attacks went up dramatically, I noticed that the pain never got quite as bad as it usually does. I was even able to use nasal sprays of Imitrex for some of my attacks and I somehow managed to take care of my little one through attacks. I don't know why the beast would be less severe while nursing, but your hormones and body are all out of whack and adjusting so maybe that plays into it? I did feel like I was physically beat down a little more than usual afterwards but the lack of sleep and having to recover from childbirth is exhausting enough so my recovery was very slow. About a week or two after my cycle was over I was finally able to 'let down' - I had to supplement w/ some formula for a little while b/c I didn't realize that my son was having to work so hard for barely anything. So I am not sure how your nursing is going but I know the attacks really made it difficult for my production and let down and it took me a while to be able to fully breastfeed. Hope all is going well with your little one!