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hi, have a look at the vitamin d3 protocol and do a loading dose https://vitamindregimen.com/ if you can try detoxing from suma and verapamil so you can go ahead with the busting protocol. do you have access to O2?

I have been suffering from episodic Cluster Headaches since the age of 19 and am now 65 years old. I do not want to bore people with my history, from not knowing what it even was I am suffering from, to being mis-diagnosed, trying everything I could and suffering from debilitating attacks without any proper treatment - untill finally being diagnosed properly and starting to find out what my triggers are and what helped me in terms of medicine and methods to overcome my various periods (once every 2-4 years). So what worked for me is Verapamil preventative getting soemtimes to 960mg a day (usually 240 x 2 after the initial onset for a duration of 2-4 months), which kept the BEAST away to Imitrex Injections which take the pain away (thank god for this medicine), but completley dibilitate me and side effects are not nice, but the pain is gone. I also soemtimes have luck with Oxygen - if taken at the roght time and available right after i get the shadows. I also started with psylocybin and belive it helped my period between attacks to lengthen, but as it is difficult to get and illegal I have not always been able to be consistant. I have never been able to BUST myself out of a cycle with this method however, as either I am on verapamil high dosage or have recently injected sumatriptan so busting is hard. I now have had a 4 year break and recently was in an extremley hot country and prior to that did not take any psylocybin for about 1.5 years and the beast returned. I had a few bad attacks and immediatley stayed away from my triggers and unfortunatley did not have availability to Imitrex, so took Verapamil up to 480 a day for about 2.5 months, after which I thought it was over. I had a break of approx 3 weeks and thought it was all gone, but only after living normally again and ignoring staying away from my triggers did the BEAST come back and now super hard with many daily attacks, lot's of Imitrex saving and high dosage of verapamil. THIS HAS NEVER HAPPENED BEFORE. I now started again with my verapamil at 720 mg daily and still at various stages had to inject Imitrex. I vere had Verapamil at such levels and still had attacks. I get shadows and feel it coming in the middle of the night, early morning etc...and sometimes can prevent it from coming by breathing cold air realy hard through my nostrils (my right nostril always closes up whn having shadows and attaches and my eye pain is right sided) for about 15 minutes - untill I manage to maybe fall asleep and then wake up with it not hurting, but with a dull pain in my head. I short - if anyone out there has anything help, advise or informtion to offer - I would highly appreciate it. I am as always down, depressed, lack of motivation and as always feel my life has been taken away bu the BEAST. THANK YOU

in the same boat. had some weird single hits a month ago. brushed them off although i kind of suspected i'm going to have an episode again. busted a couple of days ago but as it seems it didn't do the trick. got hit with 4 nasty hits at night this thursday. i think daylight saving time is what gave the last push. upping my vitd3 as we speak and hoping it will work. stay strong!

Hey everyone. Been awhile since i’ve been on here. I hope everyone is well and in good health. The last time i was on here, I made some pretty anxious and depression-ridden topics about how i thought my life was over.. boy was i wrong. I’m posting this to further support the tools and methods that have been written about on these forums.. and to possibly give hope to those that feel lost, as I once did. The last 4 years have been some of the most eye-opening years of my life. I’ve made drastic health conscious decisions that aided in my relatively pain-free years. I’ve tried “busting” and diet changes. Both with great success. I listened to my body and found that a combination of Vitamin D3, magnesium glycinate and omega 3 supplements help keep my headaches at low pain levels or at bay. An (almost) gluten free, no msg or additive, low histamine, anti-inflammatory diet helps maintain that low inflammation in my body. Sleeping with my head slightly elevated and neck supported also helps me keep the blood pressure from building. I also found that getting sick with a cold/flu will immediately bring a cycle on. I assume because of the sudden onset of inflammation in the body. Especially in the face/sinuses. Taking valuable information given by Pete Batcheller, (don’t know his @ at the moment, sorry!) the cycles have been very minimal in times where they should have been grave and unforgiving. I’ve learned to accept the fact that I may have clusters for the rest of my life. I’m 24 years old, and for the first time in the 16 years i’ve had clusters, I’m finally OK with it. Where there’s a will, there’s a way. But it’s important to keep in mind that pain free responses will not happen over night. Not every piece of information helped me. Some worked, some didn’t. Having a strong support system of people helped immensely. I can partially attribute my positive attitude to one of the “busting” methods that we know about. These headaches made me appreciate the little things in life, which in turn, makes life much more beautiful. Music sounds heavenly, sights are awe inspiring, love for those around me increase. I can live my life knowing I have the tools and resources to stop a cycle, should it come back. I also learned that hardships and trying times await each and every one of us, but will never make life not worth living to the absolute best of our abilities. The human spirit is truly indomitable. I extend my love and thoughts to everyone here! I’ll be sure to keep everyone updated as I grow older

My current belief on whether nerve block injections would have much likelihood of being a blocker on busting, is no, probably not a blocker. Full disclosure: I'm not exactly well researched on this topic. It did come up previously in this thread that you may find pertinent enough to peruse:

I'm in the exact same boat. Maybe a week ahead of you. The attacks when I fall asleep are ramping up. Had four last night.

Hey, just wondering if the nerve block injections act as a blocker on busting? I’m due to have one on Tuesday but don’t want it interfering with my next bust due on Monday. Thanks

I’m currently in “headache season” now and this is similar to my experience. I went almost two years pain free. My first headache was last week and I’ve had 3 moderate pain headaches and 1 severe last night - always at 11pm or after, waking me up in the middle of the night and they last between 30 min and 1 hr. I’m sorry yours are back after 5 years. It’s awful.

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 some 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.