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Siegfried

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  1. Haha
    Siegfried reacted to dmlonghorn in Here's a beer to avoid   
  2. Like
    Siegfried reacted to CHfather in Hemicrania that mimics CH   
    Thank you for this thoughtful response, Siegfried.  I'll just add a few notes. One is that recommended dosing for indomethacin is all over the place, between 50mg/day and 300mg/day.  And while some sources say the effects if indo can be seen pretty quickly, others say it can be a couple of weeks or more. So I can't help but wonder how many people have "tried" indomethacin but (as is also true with some CH meds like verapamil), not really had it at high enough doses for a long enough time for a fair test.  Second, I would be cautious about any data regarding hemicranias, just as we have had to be cautious about CH data.  Hemicrania wasn't recognized as a medical condition until the 1980s, and I'm going to guess that the majority of doctors don't recognize it, so it can be strongly underreported. I wonder sometimes how many cases of "intractable chronic CH" are actually misdiagnosed hemicranias.  There was a journal article in 2001 with the title "Hemicrania is not that rare." One of the authors was the great student of CH, Todd Rozen. (https://www.ncbi.nlm.nih.gov/pubmed/11577748).  Maybe current projections factor in that observation. Also, the women/men thing is highly untrustworthy in my view, because as we have seen with shifting CH "statistics" over the years, women quite often get misdiagnosed. Even though the hemicrania reports go in the opposite direction (more women than men with hemis; more men than women with CH), I just don't trust any gender-related statistics since there's no reason that I know of that there should be a prevalence in either direction, and so I tend to think it's a function of some kind of diagnostic error.
    All that said, your general principle is probably correct, and maybe people should treat things as CH unless standard CH abortives don't work for them. (On the other hand, there are some "experts" who say no harm done with first trying indomethacin so hemicrania can be ruled out.)  
  3. Like
    Siegfried reacted to CHfather in Hemicrania that mimics CH   
    This sounds like a situation that is sometimes described here.  A reason to give indomethacin a fair try with treatment-resistant symptoms that seem to be CH.
    https://www.docguide.com/case-remitting-hemicrania-continua-seasonal-variation-and-clustering-diagnostic-confusion-cluster-he?tsid=5
                        A case of remitting hemicrania continua with seasonal variation and clustering: a diagnostic confusion with cluster headache (May 2019)
    Hemicrania continua (HC) is an indomethacin responsive primary headache that is characterised by a continuous strictly unilateral headache with periodic exacerbations. About 15% may have a remitting subtype of HC. Herein, we are reporting a 36-year-old man who had a 5-year history of episodic right-sided headaches. The headaches used to occur in a discrete series lasting 4-6 weeks, separated by pain-free remissions of 10-11 months. In each relapse, he had continuous background pain with superimposed exacerbations. The superimposed exacerbations were 1-2 attacks per day, lasting for 2-5 hours, and were associated with ipsilateral cranial autonomic symptoms. However, the patient did not respond to usual therapies of custer headache (CH). He had a complete response to indomethacin. We suggest that remitting subtype of HC may mimic CH. A therapeutic trial of indomethacin should be done in all strictly unilateral headaches that are not responding to other drugs.
  4. Like
    Siegfried reacted to dmlonghorn in With my two feet back in clusterland   
    This! This is exactly what I've been experiencing as I've been tapering off of Verapamil. Stomach all knotted up, felt like I most certainly needed to visit the toilet to purge from somewhere, nope. Chest real heavy, get the sensation like I'm running out of breath.
    I check my Fitbit heart rate monitor and it's at 70-110 bpm while at rest. 
    The sensation continues to build into an attack. It happens every time preceding an attack now
    My normal resting heart rate is 55bpm.
     

  5. Like
    Siegfried reacted to tmeseck77 in With my two feet back in clusterland   
    Hope you don't have to wait till September for relief, sounds like this isn't your first rodeo and nobody knows ur body and cycle better than you. Good luck!
  6. Confused
    Siegfried got a reaction from Freud in Describing CH to non-believers   
    I tend to agree with Johncluster here. 
    But anyway, my take on this is that it's normal that someone who don't have CH do not understand what it is and how painful it can be. I am also not expecting that from them as they don't have the condition. There are also many clusterheads saying: "Oh migraine is nothing, or CH is migraine x 1000" or similar nonsense, while most of these people even never got migraine so how do they know the difference so well ? In my experience I prefer the severe pain of a 1 hour CH attack EVERY TIME above the miserably sick and almost near-death feeling of the most serious migraine attacks I experienced that last 72 hours.  
    I am quite open to talk about the condition I have and that is also how I explain it: "I have CH. It's a rare neurological condition existing of relatively short headaches that can be very painful. Pain is mainly in the eye and it goes away while breathing oxygen. but I have to deal with this nearly every day".  That's it, nothing more or less. What I then see is that most of these people are looking it up on Internet for themselves to get some more information or stumble on a video that shows what such an attack really is. Of course if you try to convince them at all cost how painful CH is and comparing it to the most grueling tortures, they will look at you like you are an idiot.
    Best Regards !
    siegfried
  7. Like
    Siegfried got a reaction from xBoss in does your pain start from the back of your eye?   
    Hi John,
    Always behind right eye for me but more on the upper side between the eyebrow and the eye. Some kind of crunching tension
    However if it stays there it will most likely only be a shadow that can stay there for hours and hours. The real attack comes with fullness in the ear. Once I start to feel pressure in my right ear and become glowingly hot, I know its time ...
    Why do you think you do not have CH ? Is there anything in your symptoms that go against it ?
    Best Regards !
    siegfried
  8. Like
    Siegfried reacted to ThatHurtsMyHead in Dreams and clusters   
    Siegfried,
    I would concur if the lucid dreams some of us have were not worse than nightmares.  Having a lucid nightmare is not fun...   
    J
  9. Like
    Siegfried got a reaction from ThatHurtsMyHead in any success stories of being CH free for good?   
    I remember someone here on the forum who got a remission of 30 years I believe and then it came back when in his seventies. 
    So, when it goes away, best to consider it as a remission and not think you are 'cured'... to avoid surprises later on
  10. Like
    Siegfried reacted to MoxieGirl in Joined the CCH club !   
    Hi Siegfried,
    Being Chronic isn't as bad as it sounds, especially as it sounds like you have things mostly under control. I've been Chronic for a long time now. I'm actually unsure what it would be like to be episodic. To go months pain free, and them, WHAM! out of the blue, another cycle. At least I know a cluster attack is never all that far away. it's just something there that I deal with occasionally. 
    That said, my clusters are pretty trivial these days. I'm getting 1-4 a month that last a few minutes are top out at a KIP3 most of the time. Once or twice a year I'll get a 30 minute KIP6. But, it's my chronic migraines that are my current Hell. 250 last year, and they're getting worse. 
    Hang in there. Life is what happens between headaches.
    MG
  11. Like
    Siegfried reacted to FunTimes in Just ANY help.   
    I would go find a good headache specialist to confirm you have cluster headaches. Clusters do not normally linger for days at a time, they come on in a instant and it is the same time of day every day. They can last a few months or Chronic (all year round).  they go from zero to full blast in 5 to 10 minutes if untreated. Oxygen is used to abort the cluster and is taken at a high flow rate with a non rebreather mask to eliminate all outside air. 25lps regulator and the cluster mask are key to getting the oxygen to work. 5hr or other energy drinks are used to help slow down the attack so you can get to your oxygen tank and can some times abort the clusters. The D3 regimen is a few over the counter vitamins to get your vitamin d levels up into a normal range.
    Search around the site for a day or so and read up an as much as you can and ask questions as needed. This place is full of people willing to help you out.   
  12. Thanks
    Siegfried reacted to Batch in Skin pain   
    Siegfried,
    A lot has happened in the field of molecular biology in the last 15 years since the two studies you referenced were conducted.  For example, sequencing of the human genome was largely complete in 2003 and finally completed with the sequencing of the last chromosome in 2006.  Since then there's been an explosion in the area of genetic mapping tools and today you can find several credible sites offering gene atlas like BioGPS that illustrate the distribution and density of specific genes.
    Where all this applies to cluster and migraine headache takes us to the central dogma of molecular biology...  DNA <-> RNA -> Protein... essentially genetic expression.  The following graphic illustrates this process.

    This process of genetic expression takes part in the nuclei in every cell type in the human body, in every chromosome and most genes.  Think of the messenger RNA (mRNA) in the graphic above as a sequence of genetic instructions, not unlike computer binary code, or a blue print that ribosomes (protein producing factories) within the cell cytoplasm use to translate or synthesize specific proteins called for in the mRNA blueprint. 
    The four basic high level instructions in genetic expression are replication, differentiation, up- and down-regulation of protein synthesis and apoptosis, programmed cell death.
    For example if the cell in the graphic above is a neuron within the trigeminal ganglia, the protein expressed above could easily be CGRP or SP in which case they would trigger the neurogenic inflammation and nociception, the pain we know as cluster or migraine headache. 
    Now we can look at a scenario where vitamin D3 helps prevent CH and MH.  Although the exact mechanism(s) of action remain unclear, several studies have identified the likely candidates in this scenario.  The key candidates involved include molecules of the genetically active vitamin D3 metabolite 1,25(OH)2D3, several molecular forms of retinoic acid, (retinol, retinyl, referred to as reinoids), a vitamin D receptor (VDR) a retinoid-X receptor (RXR) and an RNA sequence.  It's interesting to note that the VDR and RXR are also products of genetic expression.
    The following graphic illustrates where a molecule of 1,25(OH)2D3 and a molecule of retinoic acid combine to form a heterodimer, a two molecule polymer made of dissimilar molecules, that then attracts and attaches to a VDR and RXR.  This complex then attaches to the RNA portion of DNA at a Vitamin D Receptor Element (VDRE) to initiate transcription, the process of making an exact copy of the RNA sequence that's now called mRNA.
     

    This is where things get fuzzy...  The likely scenario here is where this particular process involves a genetic sequence responsible for expressing CGRP and in this case, vitamin D3 down-regulates its expression lowering the cellular concentration of CGRP to the point it is no longer capable of triggering CH.  Like I said, things get fuzzy here as a 2010 research study identified 2776 genomic positions occupied by the VDR and 229 genes with significant changes in expression in response to vitamin D3.
    So there you have a Navy fighter pilot's thinking how vitamin D3 prevents CH...  and yes, I have a degree in chemistry circa '67.
    Take care,
    V/R, Batch
  13. Thanks
    Siegfried got a reaction from dmlonghorn in yoga   
    Hi Anthony,
    I have done traditional hatha yoga for 12 years on an intensive level and I finally stopped it as it always had a devastating effect on my headaches. Both on migraine and cluster headache. I always thought it was not possible yoga could make my condition worse but finally have to acknowledge it actually does.
    Yoga addicts can pretend whatever they want but in my case, yoga has done absolutely nothing for my headaches, on the contrary, these exercises are pushing a lot of energy to the head and just intensify the headaches and make it worse overall. I have stopped practicing for 6 months now and I have seen a slight improvement over time and no more so often these violent breakout of attacks (both migraine and cluster).
    My suggestion: stay away from any indoors activity and do something outside in the open air. However if you believe in the yoga hype, don't hesitate to try it and if it worsen your condition, you can be sure yoga is the culprit. I think for our condition, tai-chi and chi-gong are better choices if one is looking into Eastern mind-body oriented practices.
    All the best !
    siegfried
  14. Like
    Siegfried got a reaction from Brain on fire in Sumatriptan Help   
    Hello Nikki,
    I am not sure if triptans can use rebounds but they definitely can cause Medication Overuse Headache (MOH). This is a different headache and IHC has a proper classification for it:
    -------------------
    8.2.2 Triptan-overuse headache
    Description:
    Headache occurring on 15 or more days/month in a patient with a pre-existing primary headache and developing as a consequence of regular use of one or more triptans on 10 or more days/month for more than 3 months. It usually, but not invariably, resolves after the overuse is stopped.
    Diagnostic criteria:
    Headache fulfilling criteria for 8.2 Medication-overuse headache Regular intake of one or more triptans1, in any formulation, on ≥10 days/month for >3 months. -----------------------
    Now its a bit a choice here between the pest and cholera. Or you take your cluster attacks as they come without MOH risk or the clusters are so painful that MOH is a small price to pay for getting rid of them.
    Sumatriptan injections are suggested here. This is indeed more effective against CH attacks and its presented as the standard treatment but also keep in mind that the injections put more pressure on the heart than the pills. When I have a CH flare-up, the attacks follow each other up in rapid succession with continuous background pain in between. So for me the pills are the safer option than injections. I do not use injections but a nasal spray in the worst case (Zolmitriptan for both the pills and nasal). I can also tell you that, if you decide to use the pills, there are much better triptans available than Sumatriptan. You have fast acting ones such as Eletriptan and Rizatriptan or slow acting ones like Frovatriptan or Naratriptan. 
    Having said that, keep trying with the oxygen. There are several masks, breathing techiques possible you can try as Chris pointed out but if you can get it working, its a huge benefit !
    For me oxygen works like magic. Rebreather, non-rebreather, high-flow, lower-flow, it all does not matter. Whenever I breath in that stuff, the pain goes away within 10 minutes in most of the cases. Even if I stop oxygen after 15 minutes with still 20 % of the pain remaining, that pain also goes away during the next minutes. With oxygen, I have managed to cut down my triptan usage with around 70 %. So it's worth further trying it but patience and creativity is key here.
    All the best !
    siegfried
     
     
  15. Like
    Siegfried got a reaction from numbnose in Busting the Clusters   
    Hi Daniel,
    Really appreciated you tell us what is working for you ! It's great people do that ! Some methods proposed here are as eccentric as it can be but who cares. Even if a million try it and there is only one patient for who the method works, that is already a huge victory
    Best Regards !
    siegfried
     
  16. Like
    Siegfried got a reaction from numbnose in Busting the Clusters   
    Hi Daniel,
    Really appreciated you tell us what is working for you ! It's great people do that ! Some methods proposed here are as eccentric as it can be but who cares. Even if a million try it and there is only one patient for who the method works, that is already a huge victory
    Best Regards !
    siegfried
     
  17. Like
    Siegfried got a reaction from Brain on fire in Sumatriptan Help   
    Hello Nikki,
    I am not sure if triptans can use rebounds but they definitely can cause Medication Overuse Headache (MOH). This is a different headache and IHC has a proper classification for it:
    -------------------
    8.2.2 Triptan-overuse headache
    Description:
    Headache occurring on 15 or more days/month in a patient with a pre-existing primary headache and developing as a consequence of regular use of one or more triptans on 10 or more days/month for more than 3 months. It usually, but not invariably, resolves after the overuse is stopped.
    Diagnostic criteria:
    Headache fulfilling criteria for 8.2 Medication-overuse headache Regular intake of one or more triptans1, in any formulation, on ≥10 days/month for >3 months. -----------------------
    Now its a bit a choice here between the pest and cholera. Or you take your cluster attacks as they come without MOH risk or the clusters are so painful that MOH is a small price to pay for getting rid of them.
    Sumatriptan injections are suggested here. This is indeed more effective against CH attacks and its presented as the standard treatment but also keep in mind that the injections put more pressure on the heart than the pills. When I have a CH flare-up, the attacks follow each other up in rapid succession with continuous background pain in between. So for me the pills are the safer option than injections. I do not use injections but a nasal spray in the worst case (Zolmitriptan for both the pills and nasal). I can also tell you that, if you decide to use the pills, there are much better triptans available than Sumatriptan. You have fast acting ones such as Eletriptan and Rizatriptan or slow acting ones like Frovatriptan or Naratriptan. 
    Having said that, keep trying with the oxygen. There are several masks, breathing techiques possible you can try as Chris pointed out but if you can get it working, its a huge benefit !
    For me oxygen works like magic. Rebreather, non-rebreather, high-flow, lower-flow, it all does not matter. Whenever I breath in that stuff, the pain goes away within 10 minutes in most of the cases. Even if I stop oxygen after 15 minutes with still 20 % of the pain remaining, that pain also goes away during the next minutes. With oxygen, I have managed to cut down my triptan usage with around 70 %. So it's worth further trying it but patience and creativity is key here.
    All the best !
    siegfried
     
     
  18. Like
    Siegfried reacted to Batch in Vitamine D3   
    Hey Freud,
    I've been providing outreach information about the anti-inflammatory regimen since December of 2010, a month after I developed it.   Since then I've received valuable feedback from from hundreds of CHers taking it.  Accordingly, this knowledge base provides answers to most questions.  The online survey of CHers taking this regimen to prevent their CH has been running continuously since December of 2011.  As of 1 Jan 2019, it's collected 293 completed and submitted surveys providing excellent clinical data.
    With 80% of CHers who start this regimen experiencing a significant reduction in CH frequency from an average of 3 CH/Day down to 3 to 4 CH/week in the first 30 days and 50% of CHers starting this regimen experiencing a complete cessation of CH symptoms in the first 30 days, the anti-inflammatory regimen is the safest, most effective and least expensive CH prophylaxis available today.  Moreover, thanks to the feedback and some dedicated research on other supplements, we are now able to address the 20% who don't respond to this regimen in the first 30 days.  The most significant part of this regimen other than the vitamin D3 is diet.  An Atkins-Ketogenic diet with zero sugars, zero wheat products and limited carbohydrates makes a huge difference.  A Feb 2018 Italian study of 18 drug-resistant chronic CHers on this diet provided some eye popping results.
    --------
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5816269/
    Introduction
    Drug-resistant cluster headache (CH) is still an open clinical challenge. Recently, our group observed the clinical efficacy of a ketogenic diet (KD), usually adopted to treat drug-resistant epilepsies, or migraine.
    Aim
    Here, we aim to detect the effect of KD in a group of drug-resistant chronic CH (CCH) patients.
    Materials and methods
    Eighteen drug-resistant CCH patients underwent a 12-week KD (Modified Atkins Diet, MAD), and the clinical response was evaluated in terms of response (≥50% attack reduction).
     
    Results
    Of the 18 CCH patients, 15 were considered responders to the diet (11 experienced a full resolution of headache, and 4 had a headache reduction of at least 50% in terms of mean monthly number of attacks during the diet). The mean monthly number of attacks for each patient at the baseline was 108.71 (SD = 81.71); at the end of the third month of diet, it was reduced to 31.44 (SD = 84.61).
     
    Conclusion
    We observed for the first time that a 3-month ketogenesis ameliorates clinical features of CCH.
    ----------
    I've been in contact by email with the Principal Investigator for this study and provided data on the efficacy of the anti-inflammatory regimen.  We're both confident combining both therapies will result in a jump in efficacy to over 90%.
    Sooo....  To my way of thinking, starting the anti-inflammatory regimen is a good move.  Based on years of experience with this regimen, I'll wager your only regret will be you didn't start it sooner.
    Take care and please keep us posted.
    V/R, Batch
     
  19. Like
    Siegfried got a reaction from ThatHurtsMyHead in How was your weekend?   
    Hi Brian,
    Vegetarian here, so a tofu steak for me 
    siegfried
  20. Like
    Siegfried got a reaction from ThatHurtsMyHead in How was your weekend?   
    Hi Brian,
    Vegetarian here, so a tofu steak for me 
    siegfried
  21. Like
    Siegfried reacted to Cheryl in Women with CH   
    I was kind of lucky because I was correctly diagnosed when I was 20 in the 1970s when I was living in England and the stuff they gave me when I lived there worked magic until the episode ended in January. Then 40 years later here I am again at 62 and they're back.
    I guess I can see maybe why there's no need for a separate forum since we get treated the same.
    But .. you're both kind of wrong because the symptoms are not "exactly" the same. There are a number of differences that studies have found:
    1) Women tend to develop them at an earlier age and more likely to develop a 2nd peak after age 50
    2) Women are more likely to have some family history of CH and migraine and can also have increased risk of Parkinsons
    3) Women are more likely to experience sensory, language or brainstem auras
    4) Women are significantly more likely to experience pain in the jaw, cheek and ear than men
    5) Women tend to develop more "migrainous" symptoms than men, are much less likely to have the alcohol trigger and significantly less likely to start an episodic cluster in the October-December timeframe (although that doesn't apply to me because both of mine happened in October-December.)
    I've noticed that my headache frequency goes up when there's a large barometric pressure change and when I alter my sleep schedule.
    Thanks for the reply -- I'll just soldier on in the general forums. 
    Best,
    Cheryl
     
  22. Thanks
    Siegfried got a reaction from TheChinBurglar in Unsure about next steps?   
    Hello TheChinBurglar,
    A few things to consider here:
    First and foremost, try to consult a headache expert in order to get a diagnosis. They are the best placed to do that as they see over thousand of headache patients every year and they know when to consider you symptoms as CH or something else. But in order to get a good diagnosis, you need to collect accurate data. So, keep a headache diary where you write as much as information down about your headaches. In addition, film yourself during an attack... your behavior will tell a lot about the type of headaches you have.
    Second, don't worry too much about not matching all the boxes and not screaming and shouting as much as this or that YouTube guy. I think your symptoms match CH relatively well. But it is important to get an MRI done to rule out any underlying condition. That is key ! If that is OK, they you will fall under one of the primary headaches. It is then up to the doctors to figure out which one. And I can assure you that, if they are real headache specialists, they know what they are doing and you have to trust the outcome and I know what I am talking about. When I got diagnosed in 2017 my CH did not look very much like textbook CH at all - just "some symptoms of CH" as they described it. But now 1,5 years later, they proven to be right and I still thanks to them every day they gave me oxygen back then, otherwise I would have ended up as a walking bag of zolmitriptan
    All the best !
    siegfried
  23. Like
    Siegfried got a reaction from CHfather in Newbie help UK   
    Hello Maria,
    Ketogenic diet is something else you can try and it seems to be very helpful for chronic cluster headache patients. I do not know much about it but what I know is that with this diet, the body is forced into a ketosis state where it does not use glucose as energy source (sugar and carbs) but uses fat instead.
    Regarding hemicrania, there are two types:
    Hemicrania Continua is a 24/7 background pain on one side of the head with exacerbations that have the characteristics of moderate CH attacks. Important for HC is that the background pain is always there and never goes away
    Paroxysmal Hemicrania resembles very much cluster headaches but there is one big difference - attacks are much shorter (2 up to 30 min) and occur at least 5 up to 40 times a day. Here is a very detailed review of the condition from a Dutch sufferer (in Dutch but you can translate it with Google) 
    https://people.zeelandnet.nl/vdwindt/migraine/hemicrania.htm
    Both conditions have an absolute response to indomethacin and response to it is a must to receive the diagnosis. 
    All the best !
    siegfried
     
     
  24. Like
    Siegfried reacted to Tony Only in Newbie help UK   
    Thank you for kindness CHfather. And true wisdom. That's pretty good word; perspective - that what we are offering here. I have a style of writing that I am preaching or seem like know-it-all but I'm always just offering my perspective. Nowadays I try to insert as much "in my opinion"s and "my personal view"s as I can. I completely missed the chronic part and yes, looks like your wife had a pause in attacks so she definitively is an episodic. I know that some doctors may label 6 months as chronic if cycles arrive whenever but that is rare.
    Our finnish group is supposed to be CH only group but just yesterday someone asked if others have another headache condition with cluster headaches (she had been told it is rare) and she got 70 replies in one evening. At least in finnish CH group quite many have something else with clusters, they seem to be more often women and diagnosing and treating is more challenging. If a person has even more than 2 conditions inside one head, telling one from the next and which symptoms belong to which one is pretty challenging. These are the most usual ones to have with clusters, in our group: migraine (with aura), migraine (without aura), hemiplegic migraine (2 types), (often chronic) paroxysmal hemicrania, hemicrania continua, trigeminal neuralgia, basilar-type migraine and SUNCT. Around in this order - I hope I got the names right and did not confuse by saying something twice with different names.
    Some things I though about the next attack arriving so soon (and if I understood correctly pretty severe); it's important to stay on the O2 a little while (at least 5-10 mins) counting from the moment when last little spark of the pain is gone, keep inhaling it for a while - this ensures that the same attack will not come back after a while. If you are able to get higher flow later on, this might help too. Sometimes when CH cycles begin, for some they can be furious at first. Hits just keep coming.
    One more thing, when CH began, did your wife have any kind of trauma to her head ? Especially physical but I would think of serious mental kind of traumas as well. These seem to be more common in more challenging patient cases when the cluster symptoms or diagnosis is not obvious. Good luck to the future !
  25. Like
    Siegfried got a reaction from CHfather in New cluster headaches   
    Hello Collin,
    Currently I am struggling with something very similar. 
    I had lots of CH attacks (which also triggered migraine attacks) from April and it stopped 7 September. Normally October and November are the most quiet months for me. But not this year. A few weeks after the cluster stopped, I have this constant headache exactly as you describe and exactly on the same places as you show in your picture. But it is not 24/7. I would say its around 3-4 days a week. At night it is much stronger than during the day. Begin November, we had the change to wintertime together with a very big drop in barometric pressure. That headache came then very strong then and resulted in 5 CH attacks in one evening. The next evening I got another 2. Then it stopped but currently again 24 h headache for 2 consecutive days. It feels like a CH attack that started but got stuck halfway and now sits there. Sometimes it comes stronger for an hour and then go back to its base level.  I have to go back to the hospital in February and I also will ask a trial for indomethacin. But I doubt its one of the hemicrania as I have excellent response on triptans and oxygen. Normally both hemircania do not react on this. 
    My CH is in permanent evolution and changes all the time. It has a lot to do with the heavy migraine I had for my entire life but seems I start to grow out of it (I am 50 now) and it is disappearing more and more. Seem the CH does not yet know how to behave with all this room in my head for itself :)
     I experienced my first CH in 2012 but it is the first time I have this semi-permanent headache.
    I think the best you can do is go to a doctor and ask for an indomethacin test. Your doctor can look up the doses and how to take it (as it is heavy on the stomach many take additional medication to protect the stomach) and then you will soon know if it is hemicrania or not.
    You can also search for "shadows" here on the forum. There are lots of threads about this subject and I remember stories from people who struggled with them for months and months in a row so I assume that these symptoms are not uncommon in CH patients. Some patients have clear-cut attacks and others have a migraine-like CH. I read once an article about this and that is because it seems that nearly 50 % of the population carries a migraine genetics but most actually do not have the condition. However, in CH patients, this genetics can make CH showing migraine-like features like nausea, photopobia, slow onset of attacks or long-lasting shadows between the attacks.
    I learned one thing... headaches are a complicated business :)
     
     
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