BostonHeadacheDoc

Hi, As stated amitriptyline is a very old medication which when used appropriately for other headache disorders can work very well and I prescribe it frequently. Dosing is very important. Patients often misinterpret the reasons why providers prescribe amitriptyline given its first use was as an antidepressant (at doses >75mg/day). Although useful in migraine, cervicogenic headache and even tension-type headache, not clear it has a role in CH. I never start more than 10mg nightly (some physicians will start at 25mg). Information sheets on amitriptyline from pharmacy are horror-shows, as they are written more for the psychiatry doses and talk about black box warnings for suicidality etc. Not to worry for small doses. Starting amitriptyline at a dose of 150mg nightly is WHACKADOODLE crazy, in my opinion. BHC

Hi Tony, sorry to hear of this. To clarify- he is getting a good (but sometimes temp) response to O2? The attacks come on quickly to severe like CH? Night attacks mostly? Does alcohol trigger an attack? He has had verapamil? Tried high dose melatonin? Does he have sleep apnea? One could review the imaging as newer onset side locked headache in an older person should always mean reviewing imaging in detail- for instance masses outside the brain may compress the trigeminal nerve.

Hi bobcat, Well that sounds rotten. Certainly not CH as the headache is all day, also CH is strictly one sided- sounds like yours is not? Not CH in which case verapamil is not going to help at all at all. Indomethacin is non specific, certainly a good anti-inflammatory, beware known to be very irritating to the stomach. Best avoid using the term cluster-migraine as it causes mass confusion and it is mostly used by folks who know not what the attacks are. Your story at the gym (at least you were lifting a dumbbell) and sudden headache- that is often one of 2 things, a thunderclap headache- which can be a syndrome known as reversible cerebral vasoconstriction syndrome (RCVS) but that only lasts- days to weeks; or could have torn a muscle, ligament or other neck hardware resulting in a cervicogenic headache (caused by neck problem). I totally understand why they thought of low pressure headache- can present with quick onset headache focused at the back of the head (can be thunderclap). Low pressure/low CSF volume headache is generally positional - you get much better quickly lying down, with head down, only for the pain to come back quickly when upright. Out of control high blood pressure can also present like this- as you have high blood pressure you had better be measuring your blood pressure at home (with a home BP kit) to make sure it is not very high). Botox is not going to help you. I was recruited to the Graham Headache Clinic at Brigham and Women's Faulkner Hospital April 15th. Fell free to PM me if you have any Qs or bmcg@bu.edu

Freud, are you episodic or chronic?

I sent a PM to Concerned mom and offering all help I can, happy to see this young man soon.

Hi Dan, Well you have the correct goal. Generally with cluster headache if you are not sure that a treatment is working- then it is NOT working. You are on a high dose of topiramate- did it ever work? How did you get up so high? If it is not helpful at 200mg a day then will not be at 600mg a day. Lucky for you tapering is easier with CH than with migraine. Suggest come down by 25mg-50mg a week. Not an exact science and you can cut the pills. Ideally with physician involvement we write scripts for 25mg tabs which makes tapering to zero easier. As you go lower you can take it all at night. Medically it is safe to taper quickly (over 2-3 weeks) but you have feel shitty. Me thinks your mind and memory will improve when you are off. Get off that stuff!! Peace

Matakarap, FOCUS. LISTEN- O2- at least 15liters/min via face mask, do it to abort. sumatriptan injections any dose- nasal spray not good in comparison- zolmitriptan is better if you really want to use nasal spray! STEROIDS. Calm down these are anti- inflammatory steroids and often stop the CH, albeit temporarily in many people. Take in the morning. VERAPAMIL Yes a minority of clusterheads actually have benefit so you deserve it to yourself to try the instant release form (80mg 3 times daily going to 2X80mg 3 times a day Peace, BostonHeadacheDoc!

Dear Kristofer, Sorry to hear of your trouble. Some advice- if it is at all possible you should attend the Clusterbusters Annual meeting Sept in Denver. You will find out there are people who have had chronic CH for longer and all sorts of advice from many who have found success from an even worse position (like Bob Wold!). Seriously you need to be there. You need to talk to other chronic CH folks,- how many have you met? Opioids have no role in cluster headache. Before you construct a rebuttal to that, just think, how bad you are, on opioids and ask yourself, are they working??? Your body has been hijacked (by opioids) currently, but that can be dealt with. BTW The FDA does not have a maximum opioid dose, but may suggest a maximum for certain products like Actiq With the data we have, Gammacore has been shown NOT to work in chronic cluster headache, in 2 well conducted clinical trials. You need the CGRP antibodies, when they are released (theoretically can switch off CH) or BOL (I hear there will be an update soon on the status of this). I presume you are aware of the vitamin D protocol, melatonin etc. Peace and good wishes, BMcG

I contacted the company that makes the gammaCore device. I am satisfied that the signal is an electrical one, and not just a sound. spinebob I am happy to continue this conversation as needed, you may have more information. I appreciate your skepticism, but in this case it does not appear to be true. I am not an engineer! Regards, Brian E McGeeney, MD, MPH, MBA BostonHeadacheDoc

Hi blueblueblue, So how is the migraine coming along? - only kidding! Sorry to hear of your troubles and welcome to the group. There is an extremely active closed discussion group on a certain other social media platform that you will be told about, featuring many of the Clusterbusters group members. You need to attend the annual Clusterbusters meeting in Denver, middle of Sept 2018. I am happy to facilitate an early office visit on your request-if you are interested message me with your contact info, I have not been on here in a while but will keep an eye out now. Regards, Brian E McGeeney, MD, MPH, MBA Neurology Dept, Boston University School of Medicine and Boston Medical Center.

Too funny Prof! I am going to take it!!! BostonHeadacheDoc ;D

Dear kmom, There are useful suggestions in this thread from very knowledgeable people. I do not think I saw steroids mentioned. The quickest way out of a cluster period (although it may be temporary) is a course of oral steroids like prednisone. The same thing you would get for an asthma attack or hives. Mostly they are well tolerated and safe, for short courses. Many on the board have used this medication. Mostly, people do well. His student health services could even prescribe this. Please keep us updated, Regards, BostonHeadacheDoc

Dear didgens, The more we know in medicine, the more we know what we do not know. We only understand a minority of disorders to the full extent, and many hardly at all. The complexity of biology at cellular/genetic level is the problem. Even if we do not understand the root cause of most disease, at least it can be defined and classified. Putting a name to something is of benefit to patients and that allows us to treat, often with some clinical trial backing, as we could define a disorder, which enables one to study better. What really bothers patients is actually the lack of good treatments, and venting about lack of cause is a secondary issue. You would rather good treatments and no clue about root cause, rather than bla treatment and good understanding of the disorder. When there is great treatment for a disorder, the lack of understanding is a mere curiosity to patients BostonHeadacheDoc

Dear kmom, Sorry to hear of your trouble. Could you please state where in the world he is- I presume, but do not know, that he is in the US. If so which state/town/city. It is important that a correct diagnosis has been made, even before venturing into treatment. Was he diagnosed by a physician? by a neurologist? With respect, BostonHeadacheDoc

Looking forward to the conference! Sorry that I will not see some folks who cannot make it, but sounds like it will be a big meeting. All going to plan will be at the reception on Thursday evening 8-) BostonHeadacheDoc

Hi brs82, DHE 45 is dihydroergotamine, hence it is an ergotamine, but one with poor oral absorption. So it is given in other routes- as a nasal spray, under the skin (subcutaneous injection) or intravenously. There is even an inhalation product in late development. On occasion I admit patients to hospital for DHE intravenously every 8 hours for a few days- works in most people but often the attacks of cluster come back after the therapy. Can give patients a much needed break, emotionally useful, even if the break is only temporary. I also prescribe DHE vials, then come in packs of 10, and patients can inject under the skin- it is not that hard to do. Patients could use this as a once off abortive, or use it twice to three times a day for 48 hours to try and break the cycle. While you are on an ergotamine you should not be taking triptans however, and also not any other ergotamine derived substance (hmm). Those with known cardiac disease or peripheral vascular disease cannot use this treatment. Hope that helps! BostonHeadacheDoc

Interesting thread! Patients with migraine tell me that indica is better. We in MA have yet to open up the marijuana dispensaries, so I do not have as much experience directly with the individual marijuana types. Orally consuming cannabinoids before bed is interesting, and likely would avoid the triggering factor of smoke when dealing with cluster headache. Would certainly be worth a try. Prior to the 1930's oral tinctures were the main route of admin for cannabinoid medications. More I think about it, really good idea- you would quickly find out if it prevents bedtime attacks. CBD may not be any better than a general mixture of plant material. Maybe some folks could experiment and post their findings BostonHeadacheDoc

Don't do it. I meant to comment on the other thread but never got around to it. There are a number of surgeons offering a surgical 'cure' of migraine and occasionally cluster headache as well. It appears this man ligates arteries, branches of the external carotid, and in addition can remove certain small facial muscles. Unfortunately this is all nonsense to me. These are brain disorders, and such procedures could never produce a 'cure' and it is very hard to find a biological rationale for improvement either. I have seen victims of migraine surgery but not cluster surgery like this...as yet. This man likely knows very very little about headache medicine- he is a surgeon with NO training in headache medicine and does NOT manage headache patients. I am open to odd treatments if there is some biological rationale but it is nonsense here. Happy to discuss further if needed. 'noninvasive surgery'- is n't that an oxymoron? It is easy to think that such procedures should only be last resort- but that is wrong- they should not be done at all. Sorry if I am stern here, but I do not like vulnerable people being taken advantage off by, at best, misguided physicians. Peace. BostonHeadacheDoc :-/

Gavis Pharmaceutics is producing Methyergine- Dr Tom Ward, Editor in Chief of the journal Headache has had a conversation with them and all good. So if your phamacy is giving you dumb looks give them that info!! Luong from Abornpharmacy has been working hard to source a location for methysergide. It really is complicated. There are very cheap Chinease sources but he does not trust them at all. So as REALLY the last resort, buying from China (costs less than 3% of the cost from Spectrum) and then send for analysis locally here in US (to outrule powdered cow dung etc)- would be doing it myself if I relied on this med. Sounds like Spectrum MAY supply investigator/research organizations but NOT phamacies or individuals. Their product has the 'USP' standard that is needed for consumption by humans. Out of the box here, but if all else fails, interested parties could er hmm.. incorporate (how about Mushy Labs inc. ) and that corp could easily buy from Spectrum. I did talk to my admin (I am a BU employee) about BU buying some; and it would be a slow and suspicious move for me to do something like that. Not giving up, BostonHeadacheDoc >

O Crumbs! I emailed well known research neurologist Marcelo Bigal, who is from Brazil, working in the US, who put me in touch with well known headache neurologist in Brazil Abouch Krymchantowski (I have read his work). He states that although the manufacturers state that the med was not discontinued there is a current problem and not available:- "for a long time we can't find them (other meds as well) and it is probable it will remain like this". That is bad news. Thank you to Platypus for keeping us informed. BostonHeadacheDoc >

Yip, it is a subcutaneous injection and any area with a reasonable blood supply would be fine. Distance from the head does not matter, it gets mixed with the venous blood and sent back to the heart to be pumped out into the arterial system, no matter where it starts. I have used sc sumatriptan myself and use my belly! It may be slower to act if you injected into a cold extremity, exposed to cold, where the body naturally reduces blood supply. BostonHeadacheDoc

Hi Platypus, Thank you for the post. I just spoke to one of the owners of Abornpharmacy, Luong, and indeed they do have methysergide, and a lot of it. Even if there are problems restocking from manufacturers, he had a delivery of 50g, which will go a long way, as the typical dose is just 1-2mg daily or a little more. Again, not 100% certain he would be able to eventually restock, but that is my opinion. He told me that part of the problem with compounding pharmacies is they are not willing to buy the required size from the raw manufacturers- at a cost of $22K or thereabouts. I did ask him about honoring an out-of-state physician and he is going to check on that. Note methysergide is not a Schedule 2,3,4,or 5, making it easier. I await his return call. I asked for a ROUGH (would not hold him to it) cost for 100X 1mg pills and he said about $100. BostonHeadacheDoc

John did present an update at the meeting. He was been working hard for a long time, getting industry to follow through. There was good news, he had at least 2 companies, including one very large one very interested. I cannot give you specifics but it has to happen this year! I do not mean to speak for John but we all got a chance to hear the update. There is good reason for optimism now and all going to plan there will be big news before the end of the year. All going to plan that is! BostonHeadacheDoc

Dear Bob, From a medication point of view, have you ever tried steroids? Prescribed steroids that is. Now I know some people have strong opinions on this, but at least it can give you some temp. relief- with a course of prednisone for 10 days or so. Agree with the Imitrex which is sumatriptan, given subcutaneously at 4mg or 6mg to abort an attack. You should stock up on those when you are quiescent! Kudzu would be something else to try along with nightly melatonin. The amitriptyline dose could be increased as well, but I do not like to overly mix an SSRI and amitriptyline. Hang in there, BHC

Thanks for all the comments folks BostonHeadacheDoc