Jump to content
ClusterBusters

BostonHeadacheDoc

Advanced Members
  • Content count

    35
  • Joined

  • Last visited

  • Days Won

    3

BostonHeadacheDoc last won the day on May 8

BostonHeadacheDoc had the most liked content!

3 Followers

About BostonHeadacheDoc

  • Rank
    Advanced Member

Recent Profile Visitors

653 profile views
  1. BostonHeadacheDoc

    New here but not new to the evil!

    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
  2. BostonHeadacheDoc

    Free 2 month gammacore trial

    Freud, are you episodic or chronic?
  3. BostonHeadacheDoc

    Searching for CH doctor in Massachusetts

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

    coming off high dose Topiramate advice needed

    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
  5. BostonHeadacheDoc

    What would you do

    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!
  6. BostonHeadacheDoc

    Gammacore for Chronic Cluster Headaches

    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
  7. BostonHeadacheDoc

    Gammacore/electrocore

    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
  8. BostonHeadacheDoc

    Remission Over

    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.
  9. BostonHeadacheDoc

    This one may me giggle...

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

    please help me help my son

    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
  11. BostonHeadacheDoc

    I wish doctors would figure this out

    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
  12. BostonHeadacheDoc

    please help me help my son

    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
  13. BostonHeadacheDoc

    2014 Conference - Nashville - details

    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
  14. BostonHeadacheDoc

    Has anyone had success with DHE 45

    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
  15. BostonHeadacheDoc

    Cannabis - Sativa or Indica?

    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
×