Jump to content
ClusterBusters

Siegfried

Advanced Members
  • Content count

    82
  • Joined

  • Last visited

  • Days Won

    4

Reputation Activity

  1. Like
    Siegfried got a reaction from alikhan in This Throbbing Headache in the back of the head!   
    Migraine can easily be bilateral while CH is rather strictly unilateral
    I have never got any success with O2 for migraine. For CH and CH shadows it works very well but for migraine there is no effect. The intense breathing that is required even make it worse. For me O2 is a very good way to distinguish between a CH shadow and a light migraine headache. Without the "O2 test" it is very difficult to tell the difference.
    siegfried
  2. Like
    Siegfried reacted to Pebblesthecorgi in More than 12 mg Imitrex in 24 hours   
    You have to be careful with imitrex as it is a potentate vasoconstrictor.  Getting it in vials or dividing autoinjector doses can help limit the total dose.  Depending on your cardiac health you should tolerate a couple of doses a day.  If you have underlying high blood pressure or heart disease caution is strongly advised.  Cardiac events have been reported after using Imitrex but in general the risk has been overblown.  The larger concern in my opinion is getting rebound headaches which are equally no fun when compared to clusters themselves.  You also risk fairly profound gi distress from vasoconstriction if overused.   Hopefully you can limit imitrex exposure by reducing doses and using oxygen
  3. Like
    Siegfried reacted to VocTeacher in Thank You   
    I want to send a Thank you to all That helped me get through 8 months of what was thought to be Cluster cycle, after my neck surgery I have been headache free, its crazy that I couldn't tell the difference from a cervical and a Cluster being I have suffered clusters for a few years Again Thanks to everyone I will be checking in and hope all I have learned will someday let me help with solid advice for somebody, Peace and God Bless
  4. Like
    Siegfried reacted to spiny in Verapamil makes my migraine headaches explode !   
    Siegfried, you do what you have to do. If you can't take Verap, then you can't. 
    I would definitely work on the D3 aspect before I took any Lithium. It is safe and Lithium is a mess in the making for many. I turned it down flat when it was suggested years ago. 
  5. Like
    Siegfried reacted to Batch in Verapamil makes my migraine headaches explode !   
    Siegfried,
    Check your In Box.  I've sent you some information about the anti-inflammatory regimen with vitamin D3.  It's surprisingly effective in preventing migraine headaches with a few additions.
    Take care and please keep us posted.
    V/R, Batch
  6. Like
    Siegfried reacted to Brain on fire in Verapamil makes my migraine headaches explode !   
    Sorry you are struggling @Siegfried I can't take Lithium (I get  Lithium toxicity). I know it has some nasty side-effect reports here, it works for some, it doesn't play well with our alternatives, except D3 & it can lower your D levels.
  7. Like
    Siegfried got a reaction from jon019 in Shame?   
    Hi Barnabus,
    From my experience, just telling like it is, is the best way forward. I am very open with my condition towards my coworkers, manager, family, friends etc... Things I mostly tell are like
    It's a very rare condition, a neurological disorder that only a few people have. I was unlucky to drew the bad fate and now have to deal with it and it will not go away anytime soon I tell how an attack feels, how 'clusters' work and that there are fixed periods that I am good and others that I am much worse. Sometimes I let them see a youtube video on how an attack looks like I also talk about the medications we are using: oxygen, verapamil, medrol, triptans etc... all heavy stuff; so next time they won't recommend you an aspirin  I usually say also that I am still lucky I can have a more or less normal life with this. Many CH sufferers are completely disabled. It's a heavy condition to deal with. No need to downplay but just stay objective and don't fall into self-pity or compare yourself openly with others with other conditions. Just tell the facts, not your interpretation of the facts.
    This way I have actually never encountered anybody who told me to take an aspirin, or lay a bit on my bed or something because they have some background of what it is. They know it's not a usual headache. If they do not have this information, you can not expect people to be aware and react in a right way. There are so many diseases out there and unfortunately cluster headache contains the word 'headache' so that's what they think it is...
    Paroxismale hemicrania patients are better off... although the condition is nearly identical, the name sounds very scary and people won't think of a headache 
    Best Regards !
    siegfried
     
     
  8. Haha
    Siegfried reacted to dmlonghorn in Here's a beer to avoid   
  9. 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.)  
  10. 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.
  11. 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.
     

  12. 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!
  13. 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
  14. 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
  15. 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
  16. 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
  17. 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
  18. 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.   
  19. 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
  20. 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
  21. 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
     
     
  22. 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
     
  23. 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
     
  24. 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
     
     
  25. 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
     
×