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Tony Only

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Posts posted by Tony Only

    Alcohol intoxication during cluster

    in General Board

    Posted

    First of all, my advice for everybody is to avoid alcohol completely in life in general and especially in treating clusters, no matter what you can achieve using it treatment wise.

    Personally, younger drinking too much, to the point of passing out provided me with a "shield" - a time period inside which cluster attacks did not happen. I drank more and more and during years this time period got shorter to the point when alcohol did not build this shield at all anymore. And I had a huge alcohol problem. Back then I used to think it lessened my attacks, I don't anymore - I think I got them back in spades later on.

    I have chatted with quite a few (usually male) clusterheads over the years who use alcohol for this shielding effect. I believe in the point when this is happening everyone is still quite manageable episodic. I don't want to encourage anyone to try or use it because there are healthier alternatives, for the brain and for life and people around us. But it's an interesting phenomenon which should be looked at that might help us understand clusters better and get us closer to finding the "cure".

    The other side of the coin; guys who have stopped using alcohol altogether at some point of their lives and have decades to look at cluster-wise usually notice there is some kind of correlation with no alcohol (different mind set) - no clusters (severe cycles).

    • Like 1

    Stephen King

    in General Board

    Posted

    Any King readers in this forum ? I know he has often stated having migraines but just about always I read a headache description in his books these days clusters come to mind. Anyone have similiar thoughts ? Should he not have heard of clusters would not be unheard of.

    • Like 1

    Busting with this medication

    in General Board

    Posted

    She is currently having a respiratory infection on top of her asthma so it's probably wise to wait to recover from that. She just sent me rest of the meds and supplements she is on:

    - Indomethacin
    - Para tabs (paracetamol)
    - Dymista nasal spray

    - Sirdalud  - relaxant

    - Ferrodan (iron) + lactoferrin

    Busting with this medication

    in General Board

    Posted · Edited by Tony Only

    10 hours ago, Pebblesthecorgi said:

    You are presenting a fairly significant list of prescription drugs largely aimed a an individual with  significant reactive airway (or COPD) lung disease.  The asthma meds are a mix of bronchodilators (open up airways), inhaled steroids and a combination of the two.  The medrol is a steroid (fairly equal to prednisone in potency) I would assume being indicated for the lung condition.  Zolt is a proton pump inhibitor similar to protonix which blocks the production of gastric juices irreversibly.  It works through an enzyme system and generally is used in short courses, it does not work right away but you dont want to use it in a sustained manner either.  A beta blocker is usually used for hypertension although it has a role in migraine prevention and heart disease.  The estrogen preparations are used vaginally and have little systemic absorption once used for 6-12 weeks.

    So if you subscribe to the belief steroids are blockers there is a concern about the medrol and some of the inhaled meds.  The bronchodilators can cause feelings of anxiety and a rapid heart rate but should not block.  I doubt the proton pump inhibitor is an issue.  Systemic estrogen can increase drug metabolism in the liver but usually vaginal estrogen doses are insufficient to cause that.  Beta blockers show up on some blocking lists but I doubt its a real issue.

    This is the med list of a person who has significant medical issues.  Would not advise stopping any of the pulmonary drugs without close medical supervision.  If she has been on steroids a long time I suspicion they are required for handling physiologic stress and weaning is probably not practical.

    She needs to be well prepared for the anxiety that can accompany a busting experience and a sitter needs to understand her breathing issues.  Ultimately it is her decision but tread lightly 

    Significant care and caution are urged. 

    Thank you so much Pebblesthecorgi :) I will translate your excellent post here in finnish so the lady in question is able to read it in her own language, and does not have to use the Google translate that usually does not do very good job with finnish. (in purple)

    Esittelet tässä merkittävän listan reseptilääkkeitä joita käytetään yleensä huomattavan hengitystiesairauden (tai keuhkoahtauman) hoidossa. Astmalääkkeet ovat yleensä avaavia tai hengitettäviä steroideja (kortisoni) tai näiden kahden sekoituksia. Medrol on steroidi (aika lailla samaa luokkaa prednisonen kanssa vahvuudessa) jota luultavasti käytetään johonkin keuhkoihin liittyvään. Zolt on protonipumpun estäjä jota käytetään närästyksen hoidossa. Sitä käytetään yleensä lyhyissä jaksoissa, se ei vaikuta heti mutta sitä ei tulisi käyttää myöskään jatkuvasti. Betasalpaajaa määrätään yleensä kohonneen verenpaineen hoitoon mutta sitä voidaan käyttää myös migreenin hoidossa tai sydänsairauden hoidossa. Estrogeenivalmisteita käytetään sisäisesti ja niillä on hyvin vähän vaikutusta kun niitä käytetään 6-12 viikkoa.

    Joten jos uskot ajatukseen että steroidit voivat olla blokkaavia tekijöitä niin silloin tässä jonkinasteisia huolenaiheita ovat Medrol ja jotkin hengitettävistä lääkkeistä. Avaavat lääkkeet voivat aiheuttaa ahdistusta ja nostaa sykettä mutta niiden ei pitäisi blokata (estää vaikutusta). En usko että protonipumpun estäjä on ongelma. Estrogeeni voi vaikuttaa lääkkeiden metaboliaan maksassa, mutta sisäisesti käytettävät estrogeeniannokset ovat niin pieniä että niillä ei pitäisi olla roolia tässä. Betasalpaajat on mainittu joskus blokkaavina mutta en usko että ne ovat oikea huolenaihe myöskään.

    Tämä on sellaisen henkilön lääkelista, jolla on huomattavia terveyshuolia. En suosittelisi lopettamaan mitään säännöllisessä käytössä olevia lääkkeitä ilman lääkärin tarkkaa valvontaa. Jos hän on käyttänyt steroideja kauan, niillä on oma merkitys myös psyykkisen stressin sietämisessä eikä niistä irroittautuminen ole käytännöllistä.

    Hänen täytyy ola hyvin valmistautunut ahdistukseen jota voi liittyä bustaamiskokemukseen ja "vahti" joka on hänen kanssaan ja ymmärtää mahdollista hengittämispuolta. Loppujen lopuksi se on hänen päätös mutta suosittele hellästi.

    Huomattavaa varovaisuutta ja huolenpitoa täytyy harjoittaa.

    Busting with this medication

    in General Board

    Posted

    Aloha !

    We have a female patient who is planning to start busting (first timer) with RC seeds (LSA). She sent me her medication list but I am not familiar with asthma medications, or hormonal supplements. DO you see anything in this medication list that could be a problem, blocking, interfering or amplifying in busting treatment ?

    Asthma medications: Singulair , Ventoline , Spiriva respimat , Sereride , Alvesco
    Medrol (for bronchitis)
    Zolt (for heartburn or to use with Medrol)
    Candesartan (beta blocker)
    Estrogel , Vagifem (hormonal)

    It's been a long time

    in General Board

    Posted

    I hope you can see our posts those who are not on social media. We have been building this association for a LONG time. I am hopeful to be able to jump out from the fast-paced social media sites and back into the more serene places such as this one. Many of you are often in my mind. Today was a special day and a day to remember it was you all here in this very forum that helped me in the very darkest of hours. I hope the absolute best days for everyone and for that day to arrive when no one has to survive Horton / clusters anymore. PF wishes !

    https://www.facebook.com/hortonassociation/

    • Like 2

    Cluster Headache Awareness Day 21st March 2019

    in General Board

    Posted · Edited by Tony Only

    https://www.facebook.com/permalink.php?story_fbid=279494592943894&id=268218244071529

    An open petition for the people working in the healthcare industry involving patients with Horton’s syndrome

    We hope that the term “headache” would not be used when dealing with our disorder but rather some other expression as part of the name of our condition. Using familiar "cluster headache" may build up to not understanding condition and expression like "it's just a headache". In our patient files Horton’s syndrome or Horton's cephalalgia can be used.

    Horton’s syndrome also has a nasty nickname; “suicide headache”. This rough sounding name is an attempt to express the severity of our condition. This is not a headache or just a head pain. These are seizures originating from the brain that leave patient alone to overcome the physical and mental traumas from these seizures (attacks).

    English term “an attack” is very fitting, and since we feel the pain of these attacks in our head region, some use the term “head attacks”. But only when you start to think these seizures appearing like physical attacks; someone repeatedly attacking you when no one can see - you start to realize the amount of fear many patient constantly live with. The “attacker” in Horton’s syndrome is an invisible shape; it breaks the patient because it feels like it’s stronger than you, it comes back again and again, it arrives by it’s own schedule and nobody even knows what is happening to you. Patients can actually be afraid to go to sleep, because sleeping is an usual trigger for an attack.

    At some point when this condition has evolved to being severe enough, many of us are ready to do absolute anything to stop these attacks from happening.

    In healtcare industry the better understanding of Horton’s syndrome and patients surviving with it will improve the management of this condition and also decrease the burden from people working in healthcare - it is an advantage for both parties.

    This text can be freely shared anywhere as long as it’s shared in full.

    Tony Taipale
    Patient with Horton’s syndrome

    #hortoninsyndrooma #CHAD2019

    • Like 1

    Patient community in Finland - Suomi

    in General Board

    Posted

    I did not think very brightly when I posted that since this is a member only area, but we should start reaching finnish clusterheads now better anyway; we have founded Horton Association Finland on 17th february this year. Cluster headache is also called Horton's syndrome in Finland, name we actively aim to use instead of a term "headache". We are here and here :) PF wishes everyone !

    Following conference remotely?

    in Advocacy, Events and Conferences

    Posted

    On 12/12/2018 at 1:39 AM, Dallas Denny said:

    @Jherbert

    Unfortunately, privacy concerns prevent streaming and/or recording of conference activities.

    Dallas Denny 

    How about not streaming anything from the conference programs live but making a short video report from conference to people viewing over internet ? I would imagine this kind of thing having a great positive impact. 

    It would not have to be anything well planned or scripted imo. Our 1400 member finnish group would be very interested to see anything and practically very few would even have a possibility to travel to conference.

    D3 Regimen - Extra Doses

    in General Board

    Posted

    Sounding good Seff. I have had to take several 10 day 2 antibiotics at the same time for h. pylori infection in my lifetime, those are especially brutal and wipe out a lot of the good bacteria as well. Almost every time clusters kick in after that. It's a slow recover day by day and any way you are able to support your gut to recover may help on the induced cluster as well. Keep us posted :)

    Does anyone have pituitary gland or adrenal gland hypofunction ?

    in General Board

    Posted

    I am trying to read into both and with what symptoms they might present themselves on a cluster headache patient. I have a wonderful and very knowledgeable doctor who thinks my clusters might be partially reacting to either one. I have loads of other stuff related to these 2 conditions as well, had most all my life. I can't on the top of my head think of seeing much discussion about these.

    D3 Regimen - Extra Doses

    in General Board

    Posted

    Batch can reply better when it comes to D3 Regimen but if I were you, I would get a blood test done ASAP to know what your Vitamin D levels are. At any cost and right away. If you are already in the green zone, taking these may not help, if you are in the danger zone, taking these might be dangerous. I personally believe the cause of CH might at least partially be in the well being of the intestines so this might still have a lot to do with antibiotics you used and any kind of inflammation can also play a part. Meanwhile being gentle on your stomach might help to improve things although slowly. Do you have anything else as treatment for clusters ?

    Newbie help UK

    in General Board

    Posted · Edited by Tony Only

    Thank you for kindness CHfather. And true wisdom. That's pretty good word; perspective - that what we are offering here. I have a style of writing that I am preaching or seem like know-it-all but I'm always just offering my perspective. Nowadays I try to insert as much "in my opinion"s and "my personal view"s as I can. I completely missed the chronic part and yes, looks like your wife had a pause in attacks so she definitively is an episodic. I know that some doctors may label 6 months as chronic if cycles arrive whenever but that is rare.

    Our finnish group is supposed to be CH only group but just yesterday someone asked if others have another headache condition with cluster headaches (she had been told it is rare) and she got 70 replies in one evening. At least in finnish CH group quite many have something else with clusters, they seem to be more often women and diagnosing and treating is more challenging. If a person has even more than 2 conditions inside one head, telling one from the next and which symptoms belong to which one is pretty challenging. These are the most usual ones to have with clusters, in our group: migraine (with aura), migraine (without aura), hemiplegic migraine (2 types), (often chronic) paroxysmal hemicrania, hemicrania continua, trigeminal neuralgia, basilar-type migraine and SUNCT. Around in this order - I hope I got the names right and did not confuse by saying something twice with different names.

    Some things I though about the next attack arriving so soon (and if I understood correctly pretty severe); it's important to stay on the O2 a little while (at least 5-10 mins) counting from the moment when last little spark of the pain is gone, keep inhaling it for a while - this ensures that the same attack will not come back after a while. If you are able to get higher flow later on, this might help too. Sometimes when CH cycles begin, for some they can be furious at first. Hits just keep coming.

    One more thing, when CH began, did your wife have any kind of trauma to her head ? Especially physical but I would think of serious mental kind of traumas as well. These seem to be more common in more challenging patient cases when the cluster symptoms or diagnosis is not obvious. Good luck to the future !

    • Like 1
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