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CHfather

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Posts posted by CHfather


  1. That's really tough, Taylor'.  I'm sorry.   I am hoping that Batch, who developed the D3 regimen, will see your post and respond.  I am going to send you his email address by a private message, so you can reach him in that way.

    This is a video about O2 use. It will give you the key information, but I don't know how much it will help you, even if the guy might look a little like Spongebob (????).  https://www.youtube.com/watch?v=PtFHRIQN17s&t=273s

    There was a person here a few years old with an autistic child with CH ("an odd form of autism," the person said).  This is a thread from then https://clusterbusters.org/forums/topic/4506-cluster-headaches-or-migraines-having-difficulty-getting-a-diagnosis/?tab=comments#comment-48715.  You might try reaching that person, "tonic," by sending a private message.  To do that, click on the envelope icon on any page (top right) and type tonic into the "To" space.

    I think D3 is probably your best bet. My sense is that 3mg of sumatriptan (Imitrex) is probably more than needed. Most adults with CH can abort an attack with 2mg, even though the Imitrex autoinjector is 6mg. (Your doctor probably doesn't know this about the 2mg usually being sufficient; it's "citizen science," not formal medical research (as far as I know).)  3mg is likely to be a pretty big jolt.  (There is a "similar type of headache" (a hemicrania) that is sometimes not responsive to triptans, so the test makes some sense.)  I'm a little surprised that the doc isn't trying verapamil first before those other two meds, because in my mind its effects are less severe, but maybe there's a reason.

     

     


  2. Tony2,

    Please see the post right above yours for some verapamil-related info.  Also, note that verapamil takes some time to get into your system, so you probably won't experience results for a while. Sometimes doctors prescribe a course of steroids to temporarily take away the pain while the verapamil is building up its effect.

    You probably want oxygen; you probably want to start the D3 regimen; probably you want to be taking Benadryl right now; you might want to consider busting; you might want an injectable sumatriptan . . . . This post addresses those things and some more: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  


  3. Others are likely to have suggestions specifically regarding the dread.  But you can reduce the dread by being sure that you are using all the best weapons, of which your spray is just one, and maybe not even the best in that category. You want oxygen; you want to start the D3 regimen; probably you want to be taking Benadryl right now; you want to consider busting; you might want an injectable sumatriptan . . . . This post addresses those things and some more, including (far down on the page) some advice about shadows (ginger, mostly): https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  


  4. 1 hour ago, gary6454 said:

    Is the slow release Verapamil better?

    No! It is considered to be much less effective.

    240mg/day is unlikely to do much of anything for you. I am assuming your doctor is starting low and monitoring side effects before adding more, which is good medical practice.

    Are you doing the D3 regimen?  If so, be sure to take your verap about 8 hours apart from the calcium in the regimen.   


  5. I have heard that Brain on fire has been going through some rough times lately, involving surgeries, PT, and a challenging recovery. This community has meant a lot to BOF, and BOF has provided a lot in return. 

    Best wishes from me, BOF. Get well soon and rejoin us when you can.

    • Like 4
    • Thanks 2

  6. When you had written somewhere (in your post or in your Medium story) about testing drugs for about two weeks, I imagined it had been prednisone that you had been taking, on a standard "taper" schedule. And so it is.  It is good that you had such success with prednisone. More often, it relieves the pain for a while but then the pain comes back.  It's not clear to me exactly what you are doing now, but please be advised that taking a prednisone taper more than once a year is risky for your long-term well-being.  It can create a condition called avascular necrosis, in which the bone at joints (knees, hips, shoulders) dies. Many people with CH who were overtreated with prednisone have developed that condition. I doubt that your "weekend headaches" are cluster headaches. It certainly would be a very rare pattern.  But I have no suggestions about what they might be.


  7. Very glad that you have found relief, Alex, and you tell the story exceptionally well in the Medium article.  I hope your very good writing might help other people toward a correct diagnosis. 

    I think virtually everyone here would be stunned to hear that a pill of sumatriptan and naproxen is sufficient for you to treat your attacks.  Clearly Dr. Mathew is not a typical clueless neurologist, since (as you say in the article) he first prescribed oxygen (which you chose not to take) and he understood that triptans are very helpful for treatment.  (Just as a side comment, oxygen is not a cure for CH, as you say in the article. It is a way of stopping attacks.)  You mention that the prescription was complex with varying pill combinations, so again, we can't conclude that your doctor was just throwing things at you.  I hope that it continues to work for you, and I thank you for sharing your information here and in your article.  

     


  8. That's a lovely program, Tony.  It's fair to say that a conversation I had with Bob Wold almost ten years ago created a big shift in my life, and I'm sure that you and others in your program and doing the same for many people.

    Here is another CB document that was created to give people a better understanding of CH.  It's kind of old now, but I suspect maybe some of it might still be pretty usable. 

    Also, somewhere there is a famous letter that was created for that purpose. Ah, here it is: A link posted by Denny.  http://www.clusterheadaches.com/wwwboard/messages/63158.html?fbclid=IwAR26DY-Zyy6hVnPkL-YkuVMcXDEiN6cEBAV0r3H8OUvlj9SE6fQKyBSDe54

    20 Facts brochure 8-24-13.docx


  9. Hello, Shubham Sinha.  It's not completely clear to me from what you have said that you have CH, but I think this file will help you see the many things that can be done to treat CH: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/     In general, you might look through the ClusterBuster Files section, where there is quite a lot of information.

    1 hour ago, SHUBHAM SINHA said:

    I have a lot of questions about Cluster Headaches, how are they caused? how did I suddenly get them? are they genetic? and more.

    I think it's fair to say that no one knows the answers to these questions with any certainty. Many theories and considerable research, but no certain answers except that to some extent there sometimes seems to be a genetic element, although most people with CH do not have parents who had it and do not pass it on to their children.

    Another fellow from India treated his CH with some success using the method called "busting."  If you put the word Vipul into the search bar at the top right of the page (with the image of the magnifying glass), you can see his posts.  In general, that search bar can be helpful if you are looking for a specific topic.

     


  10. [Edited: I see Pebbles' mentioned Dr. Schor while I was writing. Just a quick, small point: While Dr. Schor has not (as far as I know) extensively published results from the survey in peer-reviewed journals, he and others did publish findings related to oxygen and other acute treatments in a very thorough article in Headache (which I think is peer-reviewed). This article makes a further very compelling and thorough case for oxygen, and it's very important that the medical community keep being reminded/told about the importance of prescribing O2. https://headachejournal.onlinelibrary.wiley.com/doi/10.1111/head.13473]

    Dr. Larry Schor led a very big survey-based study a few years ago that looked into (among many other things) the psychological effects of CH. He speaks at CB conferences, so I'm thinking he might have something prepared, or could maybe share some of his findings with you.  I will PM you his email address.

    The booklet I'm attaching, "Living with Cluster Headaches," is anecdotal, and so might not be helpful, but just in case...

    Living with CH - 8.5x11 - 9-15-14.pdf

    • Like 1

  11. No. Tanks get refilled and reused, although when a supplier brings you more O2, they bring you a different tank and take the one you have back to be refilled and eventually given to someone else.

    Or, if your question is different -- you will use the same tank for multiple aborts. Tanks come in different sizes, holding different amounts of oxygen. The number of uses depends on many factors, including how much O2 is in the tank and how fast you use the O2 that's in the tank (this is called the "flow rate" and it is measured in liters per minute). With a really, really big tank, a person might get five hours of use. With the smaller tank (called an E tank), a person might get something like 30 minutes.

    • Like 1
    • Thanks 1

  12. 1 hour ago, graci said:

    I think going medical route will be the best option for me. 

    I am inclined to agree, as long as you can get it reasonably quickly and are not committed beyond a reasonable initial co-pay.

    1 hour ago, graci said:

    I wish I could just try it out in a doctor's office or something. 

    A small possibility . . . Some people have found that EMT stations or firehouses with O2 are willing to let them use it in an emergency. In current circumstances, this might be a lot less likely.  But if you have such a place very nearby and can get there during an attack, it might be possible. Another reservation about this is that O2 is not always very effective on the first couple of uses (though I would said that most of the time it is effective enough that you can tell whether it's helping or not).

    • Like 1

  13. graci, your question is probably more complicated than you think . . . .  The simple answer is that for you, to test whether O2 works for you, you might have to pay around $100 for the whole welding-based setup: a small filled tank, (20 or 40 cu ft -- maybe $40-60?), a regulator (maybe $30-40), and a basic mask (maybe $5-10).  If it does work and you want to set up a more optimized system, you'll need at least one larger tank (for home use--you can use the smaller one for portability, in the car for example), maybe a second regulator (so you don't have to use the same one for the big and small tanks), and maybe the better mask that is made for people with CH. All that might add $120-150.  Then you will have to bring in the tanks when they need to be refilled, and there is a cost for the refill plus the cost/hassle of trips to the welding supply place.

    When you get medical oxygen from a supplier, you typically have some kind of co-pay (others will have to say what that might be; I just don't know and I think it varies quite a lot). Your payments include a regulator and a basic mask.  Depending on the supplier, you might get a large tank and a smaller tank, and basic regulators for both.  They come to pick up used tanks and replace them.  You might want to spend some extra for a more effective regulator (or regulators) and the better mask.  How things work out with the supplier seems very dependent on the supplier and the delivery people.

    You can read more about welding O2 here: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

     

     

    • Like 1

  14. 2 hours ago, Rainmaker said:

    I started busting a minimum of every 2 days and I just busted more often figuring each bust might be less effective but hoping that there might still be a cumulative effect.  It has now been a few months of busting several times a month

    Great news!!  Congratulations on your persistence, and thank you for letting us know.

    I wonder whether you could clarify this a little, to add to our knowledge. Did your PF time only start when you switched from busting a minimum of every two days to busting several times a month?  Can you be more specific about what several times a month means? Roughly once as week?  Every five days?  How much of what substance were you taking?  Are you doing anything else that might be helping -- the D3 regimen, for example?

    • Like 1

  15. Good!  I hope it helps.

    Doctors usually fax the prescription to a supplier (maybe they have a more modern method of sending them these days).  This advice is from this file, where you might want to read, or re-read, the part about oxygen:  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/      "To avoid frustration, it might be wise for you to contact your O2 supplier before their first delivery to make sure you are getting the right equipment.  Many of them are not used to providing for people with CH.  You want cylinders (tanks), not a concentrator.  At the least, you want one large tank (an M tank or H tank) and one smaller tank for portability (an E tank).  Multiple versions of each tank are better.  You need some kind of stand, at least for your larger tank(s).  You want regulators that go up to at least 15 liters per minute (lpm), and preferably up to 25 lpm. (I say "regulators," plural, because the large tanks and the smaller tanks take different types of regulators.) And you want a NON-REBREATHER mask.  These are all things they should know to give you to treat CH, but often don’t.  When the stuff is delivered, have the delivery person set it up for you and be sure it's working."

    Virtually all private insurance must eventually cover oxygen for CH -- but it often takes a protracted fight to get it.  Medicare and other government programs generally do not cover O2 for CH, although there has been some consideration of waiver to that during the current crisis.  See this post if that is relevant to you: https://clusterbusters.org/forums/topic/6975-urgent-request-regarding-oxygen-medicare/

     

    • Like 1

  16. Just as some general information, you can use the search bar at the top right of the page to see what others have said related to questions you might have. Occipital nerve block is often abbreviated as ONB, so I would think that if you put that in, or the whole phrase, you'll see some thoughts.  My own thought on this (others might disagree) is that if you can get an O2 prescription and quick delivery, that's where you should start, along with jumping on the full D3 regimen at "loading dose" levels and maybe a prednisone taper.  Pred will typically stop attacks for a few days, and sometimes will stop a cycle.  My only qualification to these suggestions is that if you don't have CH, the oxygen very probably won't help, whereas it might be (I don't know) that the ONB would work for other conditions.

    Setting up a welding O2 system is pretty straightforward, and we can pretty much walk you through it in addition to the information in the ClusterBuster Files. I don't know whether "industrial gases" (the category that includes O2) are considered essential services and therefore open. I know that there are Airgas offices in MD just outside DC, and also in VA just on the other side of DC. You can get O2 there, if they're open. Then it's just a matter of buying a regulator and a mask online and connecting up your system.

    • Like 1

  17. 8 hours ago, graci said:

    I also had orthodontic work around the same time

    I agree that it's hard to tell right now whether you have CH.  But the anesthetic that is most typically used for dental work does set off severe CH attacks in many people who do have CH.  

    Georgetown's Headache Center is supposed to be good -- but I suspect there's a long wait (if people are even seeing patients now). U of MD has something, too: https://www.umms.org/ummc/health-services/neurology/services/headache-migraine 

    • Like 1

  18. So, those are all things that have been tested (some of them extensively) related to migraine, because there is a logic that says they should help.  This is an odd quote from a journal article about three of your four ingredients: "The prophylactic properties of other agents such as magnesium, riboflavin, and coenzyme Q10 are low at best, but their lack of severe adverse effects makes them good alternative treatment options." Like Pebbles' said, this seems to be arguing (regarding migraine), "They probably won't help much, but they can't hurt much, either." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4359851/   Maybe in combination something good happens. I know we have had enthusiasts for each of these elements at different times at the board, and I think studies have shown that magnesium supplementation can be valuable for CH.  

    • Thanks 1

  19. THMH, thanks!  As a test, attaching and inserting Goadsby's journal article on CH treatments.  Seems to be working!!!!!

    Peter J Goadsby, MD, PhD, DSc
    Headache Group, Department of Neurology, University of California, San Francisco, San Francisco CA

    Cluster Headache is a very severe form of primary headache with a population one-year prevalence
    of about 0.1 %. Classified as a Trigeminal Autonomic Cephalagia (TAC), it is probably the second
    most common form of primary headache encountered by neurologists or headache specialists.
    Cluster headache (CH) comes in two dominant forms, episodic CH, in which there are breaks of a
    month or more without therapy (80% of patients), and chronic CH in which such breaks are not seen
    (20% of patients) (1).
    The medical management of CH may be divided into the treatment of the acute attacks, and
    preventive treatment, aimed at suppressing attacks during a bout (2). Acute and preventive
    treatments are begun simultaneously at the onset of a cluster period. New surgical options and
    neurostimulation have supplanted destructive treatment approaches. (3)
    Due to the relative rarity of the condition much of the treatment of CH has evolved from clinical
    experience rather than from randomized controlled trials (RCT). The designation of ‘(RCT)’ indicates
    that a controlled trial was performed. Many uses cited above are off-license and prescribers are
    encouraged to examine the relevant information in this regard.
    Acute attack treatment
    CH attacks are typically short, from 30 to 180 minutes, and often peak rapidly; they thus require a
    treatment with quick onset. Medication overuse headache can be seen in CH patients, typically if
    they have a co-existent history or family history of migraine, and when largely ineffective treatments
    are employed for acute attacks, such as oral triptans, acetaminophen and opiate receptor agonist
    analgesics.
    Oxygen: Inhaled oxygen, 100% at 10-12 L/min for 15 minutes is an effective, safe treatment of acute
    cluster headache (RCT).
    Triptans: Sumatriptan 6 mg subcutaneous, sumatriptan 20mg intranasal, and zolmitriptan 5 mg
    intranasal are effective in the acute treatment of cluster headache (RCT). Three doses of zolmitriptan
    in twenty-four hours are acceptable. There is no evidence to support the use of oral triptans in CH.
    Dihydroergotamine 1mg IM is effective in the relief of acute attacks of CH. The intranasal form seems
    less effective, although some patients benefit from its use.
    Lidocaine: Topical lidocaine nasal drops may be used to treat acute attacks of CH. The patient lies
    supine with the head tilted backwards toward the floor at 30 degrees and turned to the side of the
    headache. A nasal dropper may be used and the dose (1 mL of 4% lidocaine) repeated once after
    15 minutes.
    Preventive treatments
    The options for preventive treatment in CH are determined largely by the bout length not by the
    designation of episodic versus chronic CH. Preventives may be regarded as short-term, or long-term,
    based on how quickly they act and how long they can be safely used. Most experts would now favor
    verapamil as the first-line preventive treatment of choice, although for some patients with short bouts
    limited courses of oral corticosteroids or a greater occipital nerve injection may be more appropriate.
    These shorter term approaches can also be employed as transitional therapy as longer term
    preventive doses are being increased. In general terms monotherapy in cluster headache is
    preferred, acknowledging that some patients, preferably managed by physicians with experience,
    will require more than one preventive.
    Verapamil is more effective than placebo and compares favorably with lithium. Clinical practice clearly
    supports the need to use relatively high doses for CH, certainly higher than those used in
    cardiological indications. After obtaining a baseline EKG, start patients on 80 mg three times daily;
    thereafter the total daily dose is increased in increments of 80 mg every 10-14 days. An EKG is
    performed prior to each increment and at least ten days after the dose change. The dose is increased
    until the cluster attacks are suppressed, side effects intervene or the maximum dose of 960 mg daily
    is achieved. Side effects include constipation and leg swelling and gingival hyperplasia (patients must
    monitor dental hygiene closely).
    Corticosteroids in the form of prednisone 1 mg/Kg up to 60 mg for four days tapering the dose over
    three weeks is a well accepted short-term preventive approach. It often stops the cluster period,
    and should be used no more than once a year to avoid aseptic necrosis.
    Lithium carbonate is mainly used in chronic CH because of its side effects, although it is sometimes
    employed in the episodic variety. The usual dose of lithium is 600 mg to 900 mg per day in divided
    doses. Lithium levels should be obtained within the first week and periodically thereafter with target
    serum levels of 0.4 to 0.8 mEq/L. Neurotoxic effects include tremor, lethargy, slurred speech, blurred
    vision, confusion, nystagmus, ataxia, extrapyramidal signs, and seizures. Concomitant use of
    sodium-depleting diuretics should be avoided, as they may result in high lithium levels and
    neurotoxicity. Long-term effects such as hypothyroidism and renal complications must be monitored
    in patients who use lithium for extended periods of time. Polymorphonuclear leukocytosis is a
    common reaction to lithium and is often mistaken for occult infection. Concomitant use with
    indomethacin can increase the lithium level.
    Topiramate is useful in the prevention of CH attacks. Typical doses are 100-200 mg daily, with the
    same adverse events as seen with its use in migraine.
    Melatonin may be helpful in CH as a preventive and there is one controlled trial demonstrating
    superiority to placebo. Doses of 9 mg daily are typically used.
    Other preventive agents include gabapentin (up to 3600 mg daily) and methysergide (3 to 12 mg
    daily). Methysergide is no longer easily available, and must always be used with breaks in therapy
    to avoid fibrotic complications. Divalproex is not effective (RCT).
    Greater occipital nerve injection: Injection of methylprednisolone (80 mg) with lidocaine into the area
    around the greater occipital nerve ipsilateral to the site of attack may result in remissions lasting from
    5 to 73 days (RCT). This approach can be very helpful in shorter bouts and to provide a general
    reduction in burden in more prolonged bouts and in chronic CH.
    Surgical approaches: Modern surgical approaches to CH are dominated by deep brain stimulation in
    the region of the posterior hypothalamic grey matter and occipital nerve stimulation. In expert hands
    the results are excellent and appropriate referrals to expert centers are encouraged. There is no clear
    place for destructive procedures, such a trigeminal ganglion thermocoagulation or trigeminal sensory
    root section.
    Further reading
    1. Lance JW, Goadsby PJ. Mechanism and Management of Headache. (7th ed.) New York:
    Elsevier, 2005.
    2. Goadsby PJ, Cohen AS, Matharu MS. Trigeminal autonomic cephalalgias- diagnosis and
    treatment. Current Neurology and Neuroscience Reports 2007;7:117-125.
    3. Goadsby PJ. Neurostimulation in primary headache syndromes. Expert Review in
    Neurotherapeutics 2007;7:1785-1789.
    American Headache Society • 19 Mantua Road, Mt. Royal, NJ, 08061 • 856.423.0043 • www.AmericanHeadacheSociety.org

    GoadsbyCluster.pdf

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