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Cluster Headache Help and Support >> Cluster Headache Specific >> End of cycle? http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1501745282 Message started by spica on Aug 3rd, 2017 at 3:28am |
Title: End of cycle? Post by spica on Aug 3rd, 2017 at 3:28am
Hello!
I've been reading the forums for a while and it has given me a lot of comfort and some ideas to try, so thank you so much for being here! I will get a proper introduction done soon but in short I'm 27 and one of the "lucky" females plagued with this syndrome. I'm not entirely sure when my clusters first started because I've had various sorts of headaches ever since I was a little child, but I think it was about 8 or 9 years ago. I was officially diagnosed in autumn 2014 and oddly enough, I went into remission after that, which lasted till June this year. I used to have my headaches in spring and autumn, this time, for whatever reason, they hit me in the middle of the summer. I haven't tracked my previous cycles properly, so I don't remember much about them other than the pain. The current one is in its 6th week now, which seems unusually long. It started with mild aches (about a 3-4) in the middle of the night in the first two weeks and progressed to hellish pain from there. The last two weeks have been utterly horrendous with 2-3 attacks per day, usually 7 or above on the pain scale. The only medication I have are 50mg Imigran (sumatriptan) tablets, which do help eventually but it takes far too long for them to take effect. My neuro didn't say anything about sumatriptan injections when I last saw her (I will ask about them at my next appointment) and oxygen isn't available as a treatment option in my country >:( , but I will discuss it too, because I've heard people have been able to acquire welder's oxygen in some cases. . What I want to ask is, what are your usual signs that your cycle is starting to end? Last week I started getting pressure type pain (theoretically could also be MOH, it feels a bit like I have a hangover) mid-day Saturday which graduated into a CH hit by around 10 pm (this happened on Sat, Sun, Mon and Tue). On Tuesday I went to sleep with the "regular" headache and woke up an hour later to a 9 CH which lasted for an hour and a half (I'm reluctant to class a pain as a 10, because deep down I know that however bad it is, it can always get worse :-[ , so unless I pass out, it's a 9) and then nothing last night, which was a big relief, because I can't remember when was the last time I was able to go a full night without an attack. My neck is still sore and I am feeling a slight pain in my head but at least I can function somewhat normally and I'm feeling better today than I have in weeks. So could this be a good sign that I'm finally over the worst part? I started taking vitamin D3 about 5 days ago and took some ginger tablets last night and today, and I've been drinking at least 2l of water for the past few days, so maybe that is having an effect too. I just want the hell to end. |
Title: Re: End of cycle? Post by Mike NZ on Aug 3rd, 2017 at 4:43pm
Hi and welcome to the forums
CH can change between cycles and within cycles, with things like which preventives work well, cycle length, which side of your head the CH is and more changing. So what happened in a previous cycle is not a perfect indicator of what will happen this time. A 50mg imigran tablet is one of the standard abortives for a migraine, which will take about 20 minutes or so to take effect. Whilst this is fine for a migraine, 20 minutes of CH pain is a lot to cope with when the injection / nasal spray / oxygen can kill a CH off much quicker. Did they put you on a preventive or was it up to you to start the D3 (great idea to do this)? It sounds your neuro isn't too experienced with CH based on this. Have you considered seeing a headache specialist? For your other question around how does a CH cycle vary, the answer is that it can be different for each person or cycle. Some have it fade away, others with a big CH and others have it just stop. So no simple answer for this. |
Title: Re: End of cycle? Post by AussieBrian on Aug 4th, 2017 at 2:43am
G'day Spica, welcome, and I can honestly say I never had two cycles the same. The only similarity was they always finished with a bang, one helluva bang, and the only wimper was from me.
Let's hope your recent 9 means exactly the same thing and only wonderful days await you. |
Title: Re: End of cycle? Post by spica on Aug 4th, 2017 at 5:11am
I (re)started the D3 after reading the information on these boards about the anti-inflammatory regimen. I know there's more to it than just the D3, but I figured it's better than nothing, till I can purchase the rest.
I took D3 quite religiously for a while because I live in a country where sunshine is very rare. But I stopped this spring because I thought I would be getting some sun over the summer - wrong! The summer has been awful, with maybe a week of proper sunshine, which I suppose could be the reason why my cycle suddenly started mid-summer instead of the usual spring/autumn. I had an attack last night and another one this morning, so it's unfortunately not over yet. Also my blood work came back clear, as did my MRI results, which I suppose was to be expected. I know I shouldn't say this but I was slightly hoping that they would return something that could be treated and that would also cure me of my clusters, but as the rest of you know all to well, it unfortunately isn't that simple :-[ Regarding my neuro - I can't say I am 100% happy with her, but she was the first one to actually recognise my clusters for what they are and not just dismiss them as tension headaches or stress. I have been trying to get an appointment with a specialist but unless I go private (which I can't afford at the moment), there is almost zero chance of getting an appointment. But my neuro did tell me that she might give me a referral after she has seen my MRI scans, which maybe means that the specialist has some "extra" appointments available which can't be booked via regular channels. I am seeing my neuro again on the 10th, so I will find out more then. On a more positive note - my husband managed to borrow an O2 tank for me! We have to return it on Monday but this at least gives me a chance to try it. He got it from a diving club and the guy who gave it to him turned out to be an ambulance driver, so I also got reassurance that it is okay to call them out when I get an attack. |
Title: Re: End of cycle? Post by spica on Aug 24th, 2017 at 5:31am
Sorry for not replying for so long, I've been so tired I just couldn't bring myself to do anything useful.
So I had my appointment with my neuro two weeks ago and she admitted she didn't have enough experience with this and referred me to a headache specialist who I saw last week. He started me on Verapamil, told me that if I can get my hands on O2, I should use it and assured that Imigran wasn't the reason why my cycle seems unusually long this time (which seems to contradict other's experience with sumatriptan). He also scheduled me for a MRA in October and set a follow-up appointment for me for November and that was it. Although on the one hand it's nice to know that the info I have found online is accurate, I was sort of hoping that perhaps a doctor would be able to provide me with slightly more. Oh well. I don't know whether it's the verapamil (the doctor did say it would take at least 2-3 weeks for it to take effect), but over the past week or week and a half my headaches have been less frequent and not as severe and I've been able to resume a semi-normal life, but I'm still not sure whether the cycle is actually over or not. I can't even do the beer test ;D because I understand that verapamil and alcohol together are a big no-no. Batch, I checked with my GP and she didn't order a Vitamin D test. I am probably going to have it done privately next week to see where my levels are at. She did tell me that they were below normal in 2016 and considering where I live, it is more than likely that I have been deficient for a long time. But now I have been taking 2x5000 capsules of Vit D daily together with Omega 3 and drinking magnesium water which has most of the minerals the D3 regimen called for (and I suppose it maybe works better in liquid form as well?), so it will be interesting to see what the levels are now. |
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