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I have both UC & I am CCH since 2012 - ask me any questions you have. And yes I have found stuff that helps. Nothing makes them go entirely away, but I have found ways to lower the intensity and number of attacks, and manage life with this condition. And my other health issues. Feel free to ask me anything.

You are definitely not alone, I also have a 'weird' migraine/CH co-existence that differs a bit from yours. If I'm in a cluster cycle I will have no migraines, however the final dose of a 3-dose bust will often trigger a migraine. If this happens then 90% of the time it means the bust has worked and my brain has flipped back to migrain mode. I'll then have a few migraines over the following months until CH rears its head again. So in my case it's a bit of flip-flopping, I can only recall one instance over the past 17 years where I had a migraine during a CH cycle. The moral of the story is I guess that both these conditions are pretty complicated and not very well understood, and there is almost certainly come cross-over in causes that leads to our individual circumstances. By accepting our individuality it also opens the mind to expermenting with the different busting regimes/tactics and finding something that works for you if the standard regimes aren't quite working or that may go against current thinking. Good luck with your journey...

thanks everyone, it just helps to hear that these things aren't necessarily outside the range of "normal"! the validation means A LOT, thanks!

You are not the first to report this unfortunately.. As for the duration.... i've had attacks that have lasted upwords to 6-8 hours. Not common, but again not unheard of. Now that we know you are a rt sider (sorry) for this unfortunate experience.. it sounds even more like CH. I'm not a Doctor and have no definitive answers and can't even claim to know "what is what".. I can tell you that shadows are a really unfortunate offspring of CH. This conversation makes me feel like another member @mit12 with both migraine and CH might have some insight? @mit12

I sure am no diagnostic expert, but the fact that your CH-like attacks do respond to oxygen, you feel them behind the one eye, and they are fast ramping makes them sound to me like yep, some CH really could be mixed in there with the migraines.

Hi BoscoPiko, Thanks for your reply, I really do appreciate it! So, all of my "CH" are on the right side, although maybe twice in the last few years I swear I got one on the left.... They tend to start between 2-4am and I either wake up with them, or I wake up and feel fine but then roll over or turn my head and then it starts. Fairly quickly gets worse and up I go to get my oxygen. Pain seems to start on the back of my head near the neck, very pulsatile, and eventually goes behind my eye too. Only autonomic symptom I seem to get is R nose plugs up completely. Oxygen works most of the time. Occasionally I get them during the day, but usually only if I had one the night before. I get some lesser forms during the day sometimes that I am starting to recognize as possible shadows. With the full blown "CH" I have to get up out of bed because any contact with the pillow makes it worse. I find I am best off standing. So I do move around, but I don't feel super restless like it is described. Sometimes I have a little residual neck tension after the oxygen, and that makes me super anxious when I am trying to go back to sleep..... I also get very photophobic, even more so than with the typical migraine. However, I know CH are supposed to last less than 3 hours and mine can last several hours if they are not treated, although that is just from memory because I never don't treat with oxygen or sumatriptan now that I have those options. I sometimes feel like the cluster headache triggers a migraine attack and that the full duration is really 2 headache types. They tend to come in "clusters" although again maybe atypical. I'd say that about every 3 months or so, I will have a week or 2 when I have them 3-5 days/nights per week. Occasionally, I seem to get one or two out of the blue by itself and not in a "cluster". Another atypical thing is that while these are very severe and worse than most of the migraine attacks I get (which may be partially because they ramp up so fast and the migraine usually gives me more time to treat it and is more amenable to treatment), they don't seem as severe as what I hear described for CH. I have not gotten to the point of banging my head on the wall. I have tried oxygen for the more usual migraine attacks I get and it really doesn't do anything. In my reading, it seems that folks that have CH and migraine do have some overlap in their symptoms and a little more atypia. However, it also seems that there is a fair amount of variation in symptoms from one person to another. And I wonder if the neurologists are wanting all the headache classification parameters to be met too strictly for a diagnosis of CH. I know most criteria for any disorder are mostly so that the right candidates are chosen for research purposes, but in real life there are variations on all diagostic themes. So, I guess I wonder if what I am describing sounds like CH to you folks who know what is what. That will help me decide on next steps with ny neurologist.

Well welcome @sanderson. Glad you decided to join us but sorry you needed to. Some of the symptoms you describe do sound a bit like CH. The "don't you dare try to rest attacks" are pretty common amongst us. I didn't notice any mention of unilateral symptoms? I see the comment about the occipital pain which I don't think is as common but definitely not unheard of. The fact that O2 worked for you (and that you have access to it) is great and is something that works for most cluster heads. Although many of us have experienced O2 not working during a full attack so I wouldn't let that rule out the possibility of CH. From my experience with CH, the pain is typically one sided with the daunting and very uncomfortable/uncommon side switch but it's usually always on one side or the other. I am not sure what you have tried to eliminate the occurrence of your pain but I would highly suggest the D3 Reg which you can read all about on here as it has been know to help with various headaches head attack types migraine included. Hope you get some answers and relief soon!!

Hi, Newbie here! I have had migraine since I was 13 or so, which became chronic 12 years ago when I was 49ish. It has not been fun--eventually lost my job and my whole life is changed. Not a new story to all of you. I had a really great neurologist who had CM and was very knowledgeable and helpful. Unfortunately, she retired due to her CM last year. About 4 years ago or maybe a little more, my headaches started changing, or sometimes they did. I kept getting these severe headaches that would wake me up at night that were not as responsive to the migraine meds. Eventually I tried oxygen and it worked! Hooray! However, no one is sure if they are really cluster headaches or some migraine variant. Oxygen doesn't help all my headache attacks, only a subset, which is what I call CH. Or since some of my doctors don't think they are clusters, I call them NPH for Nocturnal Pulsatile Headaches. However, they admit that they have CH features and seem to have some differences from my typical migraines. In addition, I get headaches that seem to be related to superficial nerve pain--mostly occipital, that seem to be worse lately and, again, different than my other headache types. However, all 3 of these headache types have some overlap in symptoms. I am not really sure what I am asking with this post. I guess I am wondering if others with multiple headache types have felt lost like I do and any advice would be appreciated. I do see a headache specialist via telehealth, but no longer have a local neurologist. There are no other headache specialists that are open to new patients in my state (Oregon) and I have tried to get into the Mayo Clinic and they aren't taking new patients either. I know healthcare in our country is screwed up and I am a victim of some of that, as are many folks on this forum. Again, I know that CH is under-researched, under-funded, and that Clusterbusters does more for the CH community than any other entity. So, I thought I would become part of the community and see what I could learn. Thank you!

I've been to a few new dentists/oral surgeons lately. They give me a big form to fill out asking whether I now have or have ever had any of a whole lot of medical conditions. Of course, CH is not on the list. I have been urging them to add it, or ask about it, since they could save people a lot of misery by not using epinephrine with patients who have CH. Will they do that? Probably not. But unlike virtually all of the conditions that the form does ask about, knowing that a patient has CH could actually matter. Just recommending that maybe you do the same with your existing dentist or any new ones.

Thank you! This is the craziest spell ever.

Do you also get mega brain freeze like I do? I'm so sensitive to that, it feels like a cluster headache for like 20 seconds sometimes when I get brain freeze. Pretty sure most people don't feel brain freeze like that!

Hello, I know your post is of last year but when I stumbled upon it I had to reply. What you are experiencing and writing her is exactly the same for me. Expect for it is all on my right side. The sharp pain when I breathe in is extremely painful, on days or times where the pain is low I still mildly feel it. I feel when the nose pain is at its worst is when my cluster headaches come on. I actually just got back from the er from a severe attack. I’ve been in pain for almost 1.5 months since after a bad flu/virus. Last week I saw an ENT that diagnosed me with a deviated septum and swollen turbinates of the right side. He also diagnosed me with Sluders syndrome. I have had smaller attacks in the past going back as far as 2018. I was told I need surgery for my nose. Can I ask how you are doing now? Did the surgery help with your pain at all? Thank you, Jennifer

Help us share cluster headache facts in honor of Cluster Headache Awareness Day. Let’s continue to advocate and educate others about this debilitating neurological disease. Together we are stronger! Please also join Clusterbusters board and staff this Sunday, March 23 at 12pm ET for an informal chat. Register for free event: https://conta.cc/4kNE20G

Sorry.. I did correct that to say NOT block. Sometimes my brain and hands are not on the same page.

Hi @FunTimes, just checking, was that intended as will block, or will not block?

@ChrisZ, The CBD oils will NOT block any busting that I am aware of.

I'm sure some of the TX locals will chime in with suggestions as they see this. Right now, we plan on just driving around between Dallas and west TX. This isn't our first trip to TX so we are just picking a section we haven't been to before.

...this is one of those "it seems like it should work" deals. ...the old CH board (clusterheadaches dot com) sadly nearly forgotten and increasingly hard to navigate (a cursory search found nothing) ...used to have a discussion on this on occasion. nobody ever reported success, and the consensus was "it doesn't work". it always seemed a bit of a knee jerk "no" to something different to me when brought up.... and perhaps some were disinclined because of that... ....we really don't know enough about how O2 works for us to dismiss out of hand any method. whether this could work or not i know not...certainly worth the try. i'm guessing...just like adding caffeine/energy drink to O2 usage enhances effectiveness for aborting a hit for many, perhaps some adjunct like that would be effectiveness enhancer/enabler for continuous low flow prevent.....dunno, but carry on..

We are coming from New Zealand. We intend to do the same or after the conference. It sure would be good to hear of any must see things in Texas! Look forward to meeting ya’ll.

I too have heard of people trying low flow O2 while sleeping with mixed results. I recall one person stating that just a plain CPAP seems to help with night attacks. Combining the 2 is an interesting idea but I can offer no personal experience, nor can I recall anyone trying such a setup. It would seem that using a concentrator AND combining the room air flow from the CPAP wouldn't give the user anywhere close to the pure O2 we recommend for an abort but as a preventative....I guess it could help? The setup would definitely increase the level of O2 per breath verses room air. Perhaps that might make a difference for some? Please update us as to its long-term effectiveness. This is worth watching.

Thank you for your continued support and education through out the years!

lovely. thank you for checking in.

Y Yes ...get your calcium checked

I recall at least one other report from pretty way back in the day of the successful use of continuous low flow oxygen while sleeping (I'm pretty sure it was with a cannula, to avoid suffocation type risks). With your cpap, you have a different, and also interesting thing going on there. I'm tempted to tag @Racer1_NC on this for any observations, since he is what I would consider a genuine O2 guru.

Just checking in. - 5 years cluster free after being chronic 8-10 daily and seconds away from ending it all. This site saved my life and I'm grateful. - took 17 tries of MM dosing every 5 days to finally get relief. ( learned about dosing here) -low histamine diet . I literally don't eat any foods with high histamines. Stopped eating meat as well. -stopped drinking alcohol (major trigger) - lost a lot of weight Initially but I have found foods I can eat to maintain a healthy diet -still maintenance dose at least 1-2 times a month. -if my d3 gets low or I don't maintenance dose I feel signs of pain. (Sickness, allergy season) - I realize food is a major trigger so I'm very cautious and eat very limited items which can be very very difficult at times but I'll rather eat blackberries for example then have a cluster any day. other triggers include - smoke of any kind (this sucks because everyone smokes and this includes hookah smoke) - extreme heat overall, the d3 regimen, avoiding histamines, dosing consistently and avoiding triggers have helped me be cluster free. Ironically, MM helped me with bipolar disorder. I stopped taking all of my bipolar meds. They're truly magic. Am I cured, ABSOLUTELY NOT but am I able to live a normal pain free life yes. At times I am very isolated from the world as I fear being triggered which sometimes is difficult but the fact I can be father to my kids is more important . Clusters have taught me to appreciate everything. Truly living between the headaches. I don't take a day for granted and wanted to send hope to anyone who may need it. -