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About Nutcluster

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  1. Nutcluster

    Confused and out of whack

    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 :-)
  2. Nutcluster

    Confused and out of whack

    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.
  3. Nutcluster

    Newbie help UK

    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?
  4. Nutcluster

    Some of your questions answered here...

    Wow that’s really interesting -thanks
  5. Nutcluster

    Confused and out of whack

    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!