Nutcluster

Hey everyone I’ve had a look through old posts and nothing really recent is coming up and not all experiences are in the same place so thought I would start a new thread to help us all figure out how hormones may impact CH. Whether you’re male/female/trans (saw that trans people have particular insights on this topic in old threads) what are your experience in this regard? So, here’s what’s going on for me atm. I’m female, early 40s and the last couple of years my CH have been less frequent. Usually I get them every year at around this time (I’m in the UK and it tends to link to daylight saving). Over the years (about 20) they have switched between the other clock change in about April but usually not more than one cycle per year. During pregnancy I didn’t have them, but both pregnancies were Jan-Sept so not during Oct clock change. However, about 2 weeks after both pregnancies I got hit (as you can imagine, my sleep was bad during that cycle). This last few years I’ve skipped a clock change and the headaches have shifted to the next one. So instead of going a year I’m going 18 months remission. It has now been 19 months since my last attack and I have only had a couple of possible shadows (those that usually indicate the start of a cycle but it hadn’t followed the pattern which is to be like that every day until the start of the bad ones). Hoping that they’re gone for good but thinking it may be linked to a drop in estrogen. I have also noticed other symptoms which could indicate a drop in Estrogen (oestrogen in case anyone is searching). My worst headache cycle was a year I got a contraceptive implant (which I had taken out because the correlation with intensity was so strong) so I’ve always thought hormones may influence the severity of the cycle. I am obviously very happy that the CH might be stopping but I may also need to address other symptoms that are starting to bother me. Naturally I am trying to avoid doing anything that will bring back CH. Can anyone else share any experiences at all which may be linked to hormones so we can have them all in one place for anyone looking? Whether you come across this thread today, or in 10 years from now add your thoughts so we can learn as much as possible about this condition!

I got one of these. I’m in the UK so it doesn’t cost me anything on the NHS. I am hoping it does the trick but haven’t seen many people saying it helps. Cycle is due soon so will update (unless it just doesn’t come this time which would be better!)

No no other symptoms. I wouldn’t say it’s a serious as all that. It’s very minor sleep paralysis. It’s just like wading through mud for my body to catch up to my brain.

I am always interested in the links. Sleep stages definitely play a part in Cluster Headache attacks and so there must be a link. It’s never been severe but getting up is hard when it’s winter and when you feel so stuck between sleep and awake.

Yeah it’s just slow getting up but no terror or anything like that. It’s just my brain doesn’t seem to be connecting to my body or something. Very strange. oh that’s interesting, it’s twice atm. 40mg. Back when I was first diagnosed I was prescribed it and it worked (not sure on dose) and then one year it just didn’t work. The GP has referred to notes from Neuro so if it’s not working I will see if we can try your suggestion. you would think after all this time I’d have them figured out. Just seems like you get on top of them and then they change.

Hi Everyone Does anyone experience sleep paralysis upon waking when in cycle. I find that trying to pass from sleep to awake can be really hard work sometimes. Sometimes when I am conscious I can’t speak/respond for a while even though I’m trying to. I haven’t had any of the more sinister symptoms (I’ve had those when I was a teenager) just generally cant pull myself out. Sometimes I feel nervous to come out of sleep too quickly as that’s when the cluster can kick in. Can anyone relate? **Details of my cluster headaches: Currently in cycle. CH usually come at night or upon waking. Have been using Oxygen for the last few years but recently added Zolmitriptan nasal sprays to options (use about one a day and the cluster seems to stay away for longer) The attacks aren’t as intense as they have been in the past but if I happen to run out of oxygen or nasal spray they last a lot longer than they would have and do get more intense. I get up to 3 a night and have just been given Verapamil to try (it’s worked in the past but due to pregnancies I haven’t tried it in a few years. Diagnosed around 10 years ago.

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 :-)

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.

Wow that sounds awful. I can’t inagine what you’re all going through. What part of the UK are you in? Try to get a referral to a neurologist. It will probably take months to be seen so ask ASAP. At least that way you’re not dealing with a GP who may know very little. The first time I discussed Oxygen the GP didn’t know it was a treatment option and had never heard of it so do plenty of research of your own on treatment options. At GP level you should be able to get a preventative. Verapamil is usually the most effective however, for me this worked for a while and then all of a sudden didn’t (I’ve seen other people say the same) When you see the neuro I would think about asking about surgery options for the number of headaches she’s getting- especially if it’s chronic. How did they know it was chronic?

Wow that’s really interesting -thanks

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!