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CHfather

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Posts posted by CHfather

  1. You're getting above my pay grade here.  It's almost 100% certain that the sumatriptan will not help you if you take it when an attack is underway--just takes too long to get into your system.  But whether the propanolol and amitriptilyne are part of the difference you're experiencing, I really can't say.

    The questions are obvious -- should you drop some meds and risk the good results you're getting in order to maybe not be taking so many meds (especially when the meds are not front-line CH meds), or just stick with what you're doing, since it's helping?  It's easy for me to say that I'd bet the RedBull alone would give you the same results . . . but I can't swear to that -- and energy shots, like practically everything else, sooner or later lose their effectiveness, so if the other things are helping, you'd want to keep using them, and I think they're the kinds of meds you have to build up in your system before they're fully effective.   I suppose you could just try the RedBull and nothing else as an abortive (no indo, no suma), and the "only" cost might be a longer and more severe attack.

    Sorry, this is the best I can do . . . just thoughts.  Get oxygen and verapamil (and I suppose Imitrex as a backup) and these questions all go away (for me, at least).

  2. Echo, I'm so sorry to read this.  Is indomethacin one of the drugs you have tried?  I ask because while it doesn't work with CH, it does work with two conditions that are very much like CH, and which include the symptoms you have described.  We have seen people here who were misdiagnosed as having CH when they actually had one of these other conditions, which are very rare.  Also, these conditions are not helped by oxygen, while CH usually is (and they're also not helped by shrooms, so you might as well rule them out as part of the process of deciding about trying shrooms).  One is chronic paroxysmal hemicrania. You can read more about that here: http://en.wikipedia.org/wiki/Chronic_paroxysmal_hemicrania.  The other (which seems less likely to me) is hemicrania continua, which you can read about here: http://en.wikipedia.org/wiki/Hemicrania_continua.

    I ask about the indomethacin because it's a kind of diagnostic test of whether you might have those conditions, so you could just try it and see whether it helps. 

    Others will answer you about the shrooms.  I have opinions, but I'm not an expert.

    With much hope that things improve for you.

  3. Not exactly sure what you're asking, but it sounds like these attacks are shorter than the ones you've been having lately (you don't say anything about their severity).  Are you just taking the indo and the RedBull, or are you also doing some or all of the others?

    So I suppose, why mess with success?  You gotta be somewhat careful with the indo plus the caffeine -- indo itself is pretty hard on the insides (docs often prescribe it along with something that will protect the stomach) -- so if you feel pain, be careful. (This, again, is my non-doctor advice, of course.)

    If you had oxygen, you'd probably be aborting those attacks in 10-15 minutes max, and I'd be very confident telling you to drop the indo.  My advice about that is to call your doc tomorrow and insist.

  4. CPH: chronic paroxysmal hemicrania  HC: hemicrania continua.

    I thought you said you were going to have a CT scan.  I was just saying that I thought MRI was more common.  It's good to rule things out -- every once in a very great while, the scan finds something that is more manageable than CH, or requires different management than CH.

    There's a search engine at the top left of the page that will allow you to search things (such as propranolol and amitriptyline) and see what others have said about them.  I don't think either of them have shown much success for CH. It's hard for me to tell you not to take the meds you've been given, since that's what you have.  I think both of those things have shown more success for migraines than for CH.  It seems like you've generally been given a bunch of migraine meds (I think indomethacin works okay for migraines at high dosages).  Sometimes with people who are just starting to treat their CH with meds, things work that don't work later, or for very long.

  5. If you have CH, indomethacin will not help (in fact, whether indomethacin helps or not is an indicator of whether a person has CH or another type of headache condition, CPH or HC, that can seem like CH; it helps for those conditions but not for CH -- and from your symptoms, you definitely don't seem to have CPH or HC).  So there's not much point taking the indo, or mixing it with the energy shots.  An extra-strength 5-hour energy shot has about twice as much caffeine as a cup of coffee (that's a true "cup" of coffee -- 8 oz), so that might be the source of the tingliness.

    There's no reason that taking an energy shot should lead to a bigger attack later.

    It's undoubtedly a good idea to cut back on any heavy drinking.  Usually what's referred to here as a "trigger" is something that brings on an attack immediately.  There are many triggers, different ones for different people, but alcohol is the most common one.

    I might be wrong, but I think a CT scan is rare related to CH: I think MRI is more common.  Also, CH indicators can't be seen on any brain scan; the scan is used to be sure that something else isn't causing the headaches/attacks.

  6. You can't call your doc's office and ask about O2 and maybe injectable imitrex?  Many people find that a nurse or even an office assistant can be more helpful (more responsive) than the doctor (though of course they can't prescribe for you).  You could fax or attach to an email the major O2 study: http://jama.jamanetwork.com/article.aspx?articleid=185035

    Some people say that breathing in cold air from an air conditioner helps with their attacks (this isn't an "oxygen" treatment--it's really the effects of the cold air).  Try the energy drinks/shots; I think they're your best bet among what you have for some potential relief.  As the CB O2 file says, you can set up your own O2 system using welding in oxygen, in just a couple of days (however long it takes to get a non-rebreather mask).  Vigorous exercise at the first sign of an attack helps some people -- really vigorous: running or vigorous calisthenics.

    Some people find that the licorice root method works well, quickly.  Be sure to check the contraindications. https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

    Same is true for the "vitamin D3" regimen: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

    And I agree with what THMH says about seeing a headache-specialist neurologist, both for general CH purposes and also because some aspects of your pattern do seem generally un-CHlike (while other aspects, such as the previous clocklike timing, and the amount of pain you're experiencing, do sound like CH).

  7. newfie,

    Like most doctors, yours seems to have no idea what he's doing when it comes to CH. I am not a doctor, so I'm just speaking from observation and general knowledge here.  Others will correct me where I am wrong.   

    The most effective prescription abortives are oxygen (see the Oxygen Page under the black-and-white MENU tab on the left side of this page for more information) and injected sumatriptan (imitrex). Sumatriptan pills take too long to work.  Oxygen is by far the best because it has no side effects (you can set up an oxygen system without a prescription, as you'll read in that file I referred you to).  Indomethacin might help, but probably won't -- and it's really hard on your stomach. 

    Almost everyone with CH has at one time or another used caffeine to abort, or try to abort, a cluster attack.  For many people, energy drinks work best.  If you have CH, there's no reason for you to stop caffeine because of it, and stopping won't help end your cycle. 

    Propranolol is mostly effective for migraines.  The blood-pressure drug that works best to help prevent CH attacks is verapamil.  The amitriptyline (Elavil) helps some people, but it's not a first-line treatment.  So you're taking a whole mess of pharma stuff that might help, while not taking the pharma stuff that's most likely to help.

    Then there's busting, which is ingesting hallucinogenic substances (in some cases, at non-hallucinogenic levels) to stop CH cycles and possibly prevent future ones.  Many people here would tell you that if psychedelics were legal, they would be the first thing medicine would prescribe -- highly effective, no substantive or long-term side effects.  Read about busting starting here -- https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 -- and then in other numbered files in the "ClusterBuster Files" section of this board.  Particularly, read the file about Warnings, and the file about "Playing Well with Others."

    No one has any idea why CH does what it does. Virtually everyone here has a story that is in some way similar to yours, about cycles morphing.  Many people will tell you that the pharma drugs seemed to make cycles worse for them.

    But let's hope that this cycle is still relatively short, and is running its course now.  If it was me, I would try an energy drink or energy shot at the first sign of an attack -- something high in caffeine and high in taurine -- or at least a very strong cup of coffee.  I would see whether you can get an oxygen prescription quickly.  I don't know what I would take of what your doctor has prescribed; I guess you can see what works for you.  I might try to get him to give you injectable Imitrex and verapamil.  (Prednisone often helps, taken on a tapered basis.)

    I guess some people here would tell you that you should try busting right now, because you don't know how long your cycle will last.  But time goes by for most people as they obtain busting supplies and, again, I'm hoping that your cycle will end soon.  You have to be off of some meds, including sumatriptan, for about five days before you can bust.

    Healthy nonsmoking vegetarians get CH, and unhealthy meat-eating heavy smokers get CH.  Non-drinkers get CH and alcoholics get CH. Your lifestyle probably has very little to do with your having CH or with the nature of your cycles.

    There are other long-term, non-pharmaceutical, preventive strategies you can try, such as the vitamin D3 protocol and preventive busting).  Will tell you more about that in a subsequent message.

       

  8. Worth trying that mamajuana beverage, which worked with a couple of near-chronic folks (and not with others)?

    I might be wrong about how ketamine is now being administered.  I do remember that it worked as a cycle-ender in some subjects when used as an IV "infusion."     >>IV ketamine abolished the ongoing cluster headache episodes in all 4 cases treated.<<  "IV Ketamine in the Clinic To Treat Cluster Headache."  Maybe no one's doing that anymore (or never did, beyond that experiment).

  9. I hope you get to try that and it works, TTS!  There was a thread here back in 2011 where a couple of sodium oxybate studies were mentioned.  See tenth post down on this page, from shocked: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1324654070/32

    I'm not sure how much more of the thread addressed s.o., but there was an interesting response (a few posts farther down) from Lieutenant2, who at that time was trying GABA for his CH.  As I recall, he had good results at first (with the GABA), but then they faded.  Unfortunately, he also kind of faded off the board around that same time.  I miss him -- always searching in interesting ways.

    Do you think you might want to try ketamine?  It seems like it's been a useful "last resort" for some when nothing else is working.

  10. I'll give the root and d3 a spin after I read up on them.

    You'll probably want to try just one.  The licorice root might work faster, I think (but pay attention to the cautions -- and if you decide that the D3 might be better, go for that (and you might want to get on the regular D3 regimen in any event)).

    Of course, I think Tony's thoughtful advice is worth considering.

    Regarding O2, it sounds like for at least one of your bad attacks (when you were golfing) maybe you were out of reach of quick access to your O2. So it might be that your 15 lpm system is generally fine. Most people do find, however, that the O2ptimask alone significantly reduces abort time, as do breathing strategies that are abetted by a higher-lpm regulator.  So you might add those things to your preparations for next time.

  11. Great advice from Jeebs.  To learn more about getting more from your O2, please read the CB Oxygen File that is under the black and white MENU tab on the left side of the page.

    Don't miss this important point:

    ThereÂ’s also the thing where some CHÂ’ers find an energy shot/drink right at onset helps the O2 work better.
    If you can, go for something high in caffeine and taurine.  Shots tend to be easier to get down faster. The Monster Hitman Sniper shot has a whole lot of caffeine; so does the Monster drink in the blue can.  (For most people, the caffeine doesn't prevent them from getting back to sleep.)

    Since getting busting supplies can take a while, you might want to consider the licorice root method. You can get the licorice root extract at any store that sells natural medicines. https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

    Also, for some people the vitamin D3 regimen has quickly ended cycles or reduced their severity: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

  12. p'fluff, here is the main part of the description of CH from the Clusterbusters.org website (https://clusterbusters.org/?page_id=46):

    >>>The attack usually involves severe pain on just one side of the head, apparently centered behind the eye or between the eye and the ear, or between the eye and the top of the head. The pain is a steady and severe burning and penetrating sensation, as if a red-hot spike were being thrust through the eye and into the brain, and then twisted.

    Other symptoms accompany the pain. On the same side as the pain, the eye may become red and flow copious tears, the eyelid may droop and the pupil may become smaller. A very runny nose and/or heavy congestion is common.

    There are cluster attack behaviors that distinguish them from migraines or other types of headache. Cluster sufferers cannot lie down or remain still, but feel they have to pace around or move in some way. In the worst attacks, they may crawl or roll on the floor, pound their fists on their heads or the floor, or even pound their heads on the floor or wall. Muttering, swearing and screaming is common, escalating with the severity of the pain.<<<

    You definitely describe many CH-related things, particularly the severity of the pain, the nature of your reaction to it, the other symptoms (stuffed-up nose), and the way cycles come and go.  I'm sure it's not really necessary to tell you that you should get to a headache specialist as soon as possible.  A general neurologist is as likely to misdiagnose CH as to recognize it (sinus headache is one of the top misdiagnoses).  Drat that Bejeeber for sneaking in ahead of me and already saying this.

    Having a cycle that occurs regularly in a particular season is often true for people with CH.  For most people with CH, smoking is not a trigger (but for some it is).  The most common trigger is drinking alcohol.

    In the early stages of CH, some treatments help, or at least seem to help.  Typically, tramadol, opioids, and Afrin are not effective for treating CH.  If you have CH, the first thing you need is oxygen, which is the best and safest abortive.  Other medications sometimes help a lot in the early stages.  There are natural remedies, legal and illegal, including the use of hallucinogens (or "busting").

    We can tell you more about what to do if you become more convinced that you have CH, but seeing a specialist doctor should be your first action.  And if you do see a doctor, be prepared to insist on oxygen if it is determined that you do have CH.  Even doctors who correctly diagnose CH sometimes fail to prescribe oxygen.

  13. This is one where I'd particularly like to see the whole article.  (Research done in France.) 

    Here's what the abstract says:

    Introduction

    The sphenopalatine ganglion (SPN) has been proven to be involved in various types of facial pain syndromes. Management of these cranio-facial pain syndromes can be challenging, and existing specific treatments are sometimes inefficient and may fail. The purpose of this study is to describe and evaluate alcohol SPN in the management of cranio-facial pain.

    Methods

    Forty-two patients suffering from refractory facial pain who underwent 58 consecutive SPN were included in this study between 2000 and 2013. Patients were divided into three groups: group “cluster headache” (CH), group “persistent idiopathic facial pain” (PFIP), and group “Other”. Pain was assessed using Visual Analogue Scale scores (measured immediately before and after procedure and at regular intervals following the procedure). Alcohol SPN was considered to be effective when pain relief was equal to or greater than 50 % and lasting for at least 1 month. All procedures were realized ambulatory under CT guidance and consisted of an injection of 1 ml of absolute alcohol.

    Results

    Overall efficacy rate of alcohol SPN was 67.2 %, with mean pain relief duration of 10.3 months. Procedure was graded either not painful or tolerable by patients in 64.2 %. Analysis showed a higher efficacy rate in the groups CH (76.5 %) and PFIP (85.7 %) compared to the group Other (40 %). No difference was found between groups regarding the recurrence rate.

    Conclusion

    Alcohol SPN under CT guidance appears as a safe and effective treatment of refractory facial pain, especially in cases of cluster headache and persistent idiopathic facial pain.

    http://link.springer.com/article/10.1007%2Fs00234-014-1354-y

  14. Also the time required for the drug to reach the blood is way too long to help us with a cluster attack
    Not talking about a suppository as an abortive, doc.  Not recommending it as anything.  Just saying that a couple of prominent folks here have discussed taking seeds as suppositories.  I googled for those quotes; here are a couple:

    spiny: >>I know seeds can be taken via suppository<<

    Ricardo: >>as funny as the "Hawaiian Baby Woodrose Seeds and LSA Suppositories" link is, it is also a serious article that has a real way of bypassing any sort of nausea or bad taste<<  This is the link Ricardo was referring to: http://www.neurosoup.com/hawaiian-baby-woodrose-seeds-and-lsa-suppositories/

  15. This hand-held, portable device, which is supposed to abort cluster headaches, was discussed at last year's CB conference, and some folks from this board participated in clinical trials.  As I recall, at least some of them felt that it sometimes worked pretty well.

    I just checked their website, and it appears that it's available in several countries (not the US), including Canada, Italy, and the UK.  Wondering whether anyone has got one, or looked into it?  Since it generally was not as effective as oxygen (as I recall), it doesn't seem like a huge breakthrough, but maybe the easy portability could make it a good alternative in some situations, such as when traveling without oxygen(???).  And maybe they'll make it better based on the trials (???).

    Website: http://www.electrocoremedical.com/gammacore

  16. This reminds me of an article I was reading the other day from Scientific American, about the so-called "second brain" that resides in our intestines (the "enteric nervous system").  The whole article is pretty interesting, but there were two points in it that I found possibly somehow relevant.

    1. "The enteric nervous system uses more than 30 neurotransmitters, just like the brain, and in fact 95 percent of the body's serotonin is found in the bowels."  Reminded me of the suggestion made more than once by someone (Ricardo, I think) of using tryptamine suppositories.

    2. "Scientists were shocked to learn that about 90 percent of the fibers in the primary visceral nerve, the vagus, carry information from the gut to the brain and not the other way around."  I was thinking about that gammaCore device that was previewed at the CB conference and tested by some folks, which works by affecting the vagus nerve. (I'm going to post something about that in another thread.)

    Here's the Scientific American article: http://www.scientificamerican.com/article/gut-second-brain/

  17. I use Firefox.  Like I said, I did absolutely nothing different from the first time to the second: e.g., didn't clear my cache first. Just typed clusterbusters.org into the address bar each time.  First time I got that error message; second time it let me in.

  18. Oh, didg, I am so, so sorry to read this.  People have surprised their doctors before, and we all know you're not the type to leave a stone unturned.  Wishing for the best.

    Jerry

  19. I wanted to check this out -- but I can't even connect to the general CB site.

    Secure Connection Failed

    An error occurred during a connection to clusterbusters.org. Peer's Certificate has been revoked. (Error code: sec_error_revoked_certificate)

        The page you are trying to view cannot be shown because the authenticity of the received data could not be verified.

        Please contact the website owners to inform them of this problem. Alternatively, use the command found in the help menu to report this broken site.

  20. very sorry for how much you are suffering, muneca.

    it doesn't sound like you have cluster headaches, from what you describe.  you do seem like a very good candidate for disability insurance.  we have had some discussions about that here.  several people here have applied on their own and won their cases to receive social security disability benefits.  you can read about the process and requirements for making that application here: http://www.ssa.gov/dibplan/dqualify.htm.

    if you meet the basic criteria described there and you don't want to pursue this on your own (or with the help of someone like your sister), you can probably get a lawyer to take your case.  there is very little up-front cost to you in doing that.  the lawyer's fees are not collected unless you win. if you lose, the lawyer doesn't get paid.  when i say "very little up-front cost," that's a relative thing -- there are fees for things like copying your files, and they can add up.  but by far the biggest cost item, the attorney's fees, are not charged unless/until you win, when it's taken out of part of the benefits you receive.  there are many law firms that specialize in disability cases.  here is a link to one of them: http://ssd.binderandbinder.com/google/?wm_crID=20102154&wm_lpID=40732117&wm_ctID=399&wm_kwID=19373890&wm_mtID=1&wm_content=0&wm_g_crID=46673559550&wm_g_kw=%2bssdi&wm_g_pcmt=&wm_g_cnt=0&wm_g_device=c&gclid=CM_ogJ7hsb4CFe47MgoddzQAaA&wm_kw=%2bssdi&utm_source=google&utm_medium=cpc&utm_term=%2bssdi&utm_campaign=social+security+disability&wm_sd=1&wm_v=google.  like i say, there are many such firms, and also many smaller local firms that will handle a disability case.

    best wishes to you.

  21. Vitamin D Deficiency Predicts Prostate Biopsy Outcomes

    Abstract

    Purpose: The association between vitamin D and prostate biopsy outcomes has not been evaluated. We examine serum vitamin D levels with prostate biopsy results in men with an abnormal prostate-specific antigen and/or digital rectal examination.

    Experimental Design: Serum 25-hydroxyvitamin D (25-OH D) was obtained from 667 men, ages 40 to 79 years, prospectively enrolled from Chicago urology clinics undergoing first prostate biopsy. Logistic regression was used to evaluate the associations between 25-OH D status and incident prostate cancer, Gleason score, and tumor stage.

    Results: Among European American (EA) men, there was an association of 25-OH D <12 ng/mL with higher Gleason score [ch8805] 4+4 [OR, 3.66; 95% confidence interval (CI), 1.41–9.50; P = 0.008] and tumor stage [stage [ch8805] cT2b vs. [ch8804] cT2a, OR, 2.42 (1.14–5.10); P = 0.008]. In African American (AA) men, we find increased odds of prostate cancer diagnosis on biopsy with 25-OH D < 20 ng/mL [OR, 2.43 (1.20–4.94); P = 0.01]. AA men demonstrated an association between 25-OH D < 12 ng/mL and Gleason [ch8805] 4+4 [OR, 4.89 (1.59–15.07); P = 0.006]. There was an association with tumor stage [ch8805] cT2b vs. [ch8804] cT2a [OR, 4.22 (1.52–11.74); P = 0.003].

    Conclusions: In AA men, vitamin D deficiency was associated with increased odds of prostate cancer diagnosis on biopsy. In both EA and AA men, severe deficiency was positively associated with higher Gleason grade and tumor stage. Clin Cancer Res; 20(9); 2289–99. ©2014 AACR.

    http://clincancerres.aacrjournals.org/content/20/9/2289.abstract?sid=cbc9cfe2-dc3f-4201-a045-bb67995dd244

  22. No idea whether this might also somehow be applicable to CH, but some big guys (Goadsby, for one) apparently think it has great promise for migraines (which some people here also experience).

    May 5, 2014

    MINNEAPOLIS -- May 5, 2014 -- Monoclonal antibodies show promise for the prevention of migraines, according to 2 studies presented at the 66th Annual Meeting of the American Academy of Neurology (AAN).

    Both drugs are directed against a relatively new target in migraine prevention -- calcitonin gene-related peptide (CGRP).

    One study involved 163 people who had migraine from 5 to 14 days per month. They received either a single IV dose of a drug called ALD403 or placebo, and were followed for 24 weeks. Those who received the drug had an average of 5.6 fewer migraine days per month -- a 66% decrease compared with 4.6 fewer days per month for those who received a placebo (52% decrease). Sixteen percent of those who received the drug had no migraine days at 12 weeks, while none of those who received the placebo were free from migraine at that point.

    There were no differences in side effects between those receiving the drug and those receiving the placebo.

    “These results may potentially represent a new era in preventive therapy for migraine,” said Peter Goadsby, MD, University of California at San Francisco, San Francisco, California, who is an author on both studies.

    In the other study, 217 people who had migraine 4 to 14 days per month received biweekly subcutaneous injections of either a placebo or a drug called LY2951742 for 12 weeks.

    Those who received the drug had an average of 4.2 fewer migraine days per month at 12 weeks (63% decrease), while those who received placebo had 3 fewer migraine days per month (42% decrease).

    Those who received the drug were more likely to have side effects including pain at the injection site, upper respiratory tract infections, and abdominal pain, but overall the drug was considered to be safe and well-tolerated.

    “Migraine remains poorly treated, and there are few effective and well tolerated treatments approved that prevent attacks from occurring,” said David Dodick, MD, Mayo Clinic, Phoenix, Arizona, who was also an author on both studies. “There is a huge treatment need for migraine. We’re cautiously optimistic that a new era of mechanism-based migraine prevention is beginning.”

    http://dgnews.docguide.com/new-drugs-offer-hope-migraine-prevention?overlay=2&nl_ref=newsletter&pk_campaign=newsletter

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