Tony Only
-
Posts
570 -
Joined
-
Last visited
-
Days Won
25
Posts posted by Tony Only
-
-
My dear friend is in absolute hell. She has multiple headache disorders, including cluster headache, she is managed chronic. She was hospitalized with high fever (40 celsius/104 fahrenheit) and a migraine-like headache was non-stop at KIP level 10 when they checked her in. They did not figure out the cause for it, oxygen was not touching it, she got IV antibiotics. Nephropathia epidemica or some insect bite were suspected, and cerebrospinal fluid sample was taken.
She is now home, in weak condition, needle hole in the spine leaking so she must lay down and not move but is getting cluster attacks. Any thoughts? All she has for trying to calm down CH is microdosing.
-
On 5/18/2021 at 6:39 PM, eileenbunny said:
Hi everyone,
https://cbconference2021.planningpod.com/
This is the site and registration for our 2021 conference in Chicago/Rosemont, IL, Sept. 23-26, 2021. I know several people have asked about a virtual option and I'm going to say I will try to do this. It's a heavy lift with an in-person event at the same time, and I don't currently have the manpower. If you would like to volunteer to help with technology (REALLY need people who are tech literate here) it will help to make this happen.
As we are in close contact during our conference, the in-person conference is intended for those who have been vaccinated for Covid-19.
We are looking forward to seeing real, live human beings again and hugging you all in September.
-Eileen
@eileenbunny How about posting this on your Facebook page ? Then we can share it on different FB groups. There are tons of people there.
-
1
-
-
4 hours ago, trjonas said:
Here's to complete healing!
Yes ! To complete healing !
-
2
-
-
6 minutes ago, spiny said:
Tony, congratulations on your new family member!!
I pray that all ended well in that department!!
I am delighted that you killed that cycle too! It is criminal, in my book, to penalize you for 'doing what had to be done'. Big hugs my friend!!!
Thank You so much @spiny - all ended well
sending *hugs*
-
1
-
1
-
-
Amar has been on high dose verapamil (monitored as required) and has been responding very well to that. His doctor thinks he does not have CH (lacking autonomic symptoms sometimes) and made him stop cold turkey and now CH is back big time. Amar knows very much about CH, probably more than an average doctor and maybe this can be a problem - also being kind and polite does not help if you are not being listened to in the first place.
-
I'm following this too. Reminds me of Ayurveda, also out of India. https://www.webmd.com/balance/guide/ayurvedic-treatments
In ayurvedic treatments people are treated based on their individual "body types" (doshas). They also view cluster headache as curable. It's a huge promise but so far I don't know of any patients who would have truly test ran ayurvedic treatment protocols, to see how well they work or do they.
-
On 6/10/2021 at 4:05 PM, Cast Iron said:
@trjonas
In the last years I have tried to lower my verapamil and every time I ended up in really bad cycles. It's like my system really needs a certain level of verapamil to keep it at bay. You can also say that I have built a dependency on 720mg (I was on 840 in one bad cycle), and I won't deny that. So I took the plunge into the D3 to hopefully break the dependency and cause I had read so many success stories about it. But like you say, for some it works for others not. Upping my intake to levels above 300...well I have to read up about it because I do not know what the (side)effects might be.
But if this works for you, then I could not be happier for you. Cutting a third on your meds does probably mean you'll have a significant part of your normal life back.
All the best
Alex
This was me 10 years ago. At my chronic phase I was on 720-1100mg verapamil daily. To me the "dependency" was also keeping CH non-stop; keeping me chronic. I never got relief from Batch regimen (Vitamin D protocol) as long as I was on verapamil. Looking back now, for me use of steroids and triptans also made it impossible to create a PF break with vitamins. At the very end of my rope I was forced to do the detox from prescription meds to be able to start busting. It's a road I probably could not walk twice in one lifetime. But now that I'm free from Rx, D3 protocol is only thing I need to keep me pain free and have busting to use should things go bad. I have serious heart issues from verapamil and back then could not do any exercise any more, sometimes not even walk or stand (due to heart and BP) so I'm very satisfied with this change.
PF wishes to everyone
-
3
-
-
On 5/2/2021 at 9:21 PM, trjonas said:
@Tony Only Is https://www.lifeextension.com/lab-testing/itemlc081950/vitamin-d-25-hydroxy-blood-test (though that's only Vit D) an option for your country? If not, I can help you pay for a test in Finland if you need it. I'm not wealthy but I want to help!
Thank you @trjonas that is so sweet of you
Here's an update: After writing these posts I quit taking the Batch regimen (anti-inflammatory regimen) because was forced to do so in public healthcare. I had been leaving "god please help me" messages to the neurology department in my town. In november we had a baby, our baby was in intensive care and as parents we were staying in hospital 24/7 me starting to get CH attacks again. It was difficult even to get O2 treatment in hospital which kind of gave me perspective and real life experience how far behind we still are here in CH treatment. But then one day the neurologist called. He backed me in using anti-inflammatory regimen, I started it back up and public healthcare was forced to give me heathcare. My calcium was checked and it was ok. I can now get my Vitamin D level checked this fall, taking the Batch regimen daily again.
I had to use some Lucy in the sky with diamonds to terminate the cycle that tried to get going; me being open with it we are now clients in child welfare services and I'm labeled a drug user. At this point, I don't mind - don't have time to worry about it, but will work for the rest of my life so that no one should go through what we went through.
But things are good now CH wise
-
2
-
-
I have been replying to Amar every now and then on Facebook and looks like doctors who take care of him don't know CH at all and maybe not even headache disorders in general. I think one good doctor in India would be sufficient. Is there someone in Clusterbusters who we could contact, who could help Amar further (probably not following this message board) ?
-
Thanks to everyone who have replied !
And thanks @trjonas - I have known Boswellia serrata to be used for CH but this is the first time I heard it's this much beneficial compared to indomethacin for treating hemicrania continua. I sent a link to this discussion to the patient in question and also shared this on Facebook, I think many may benefit of this !
-
2
-
-
We have created a Facebook post you can share today if you use social media:
https://www.facebook.com/hortonassociation/posts/788401562053192Other material for CHAD 2021 is in our website:
https://sites.google.com/view/hortonyhdistys/in-english/chad-in-englishPain free wishes everyone
-
Check the links in the description
Cluster headaches are one of the most excruciating conditions known to medicine. They destroy lives and drive many patients to suicide in order to escape the pain. But psilocybin and related substances can provide dramatic relief for many patients. Help them get their lives back. Support legalising access to psilocybin and related substances for the treatment of cluster headaches. More information here: https://www.preventsuffering.org/clus...
Read our November 2020 policy paper "Legalising Access to Psilocybin to End the Agony of Cluster Headaches":
-
5
-
3
-
-
You don't need even a single dose of triptan when you have oxygen + other abortatives and a good preventative. But if recently diagnosed it might seem hard to get there and new clusterheads usually are the ones who fall on suma path (and many are unable to get out). I personally think it's magnificient that they are limited nowadays, remembering those days they were not and having overused them myself to the extreme. Lots of friends from that era are either dead or live with a damaged heart. They can lengthen cycles, increase frequency and intensity of attacks. Many still keep on using them when they have realized this; either because of fear or inability to get oxygen or some other reason. I would say use them in an absolute emergency only, and hope we get rid of them or manage to invent and manufacture a cluster and heart-safe triptan one day. The second level of hell you may end up to overusing them regularly is something beyond even cluster-imagination.
[preaching stops]-
1
-
-
6 minutes ago, spiny said:
It stinks that you are penalized for supplementing when your head clearly benefits from it. Another reason to be happy that Batch is succeeding in getting a trial going. Too bad it will take time to implement across the globe!!
It's a bit of a twisted logic - Vitamin D is added to our food in Finland since we are Vitamin D deficient as a nation (no sun during winters) but then again if you supplement it's dangerous and we are already getting "too much" from food that has added Vitamin D. This heated discussion has lasted for decades. Few key doctors who dare to disagree are out of doctor's union. Research will change the world.
-
2
-
-
Thanks Siegfried and spiny
-
On 10/21/2020 at 6:24 AM, Eleusinia said:
Did they discuss how often it needs to be taken in order to benefit?
I have very limited understanding for the scientific side but I thought this might explain why busting (that we do) is beneficial for many for such long periods of time. And then needs to be done again when inflammation reaches the certain point again and again unless something is changed permanently in diet etc.
I'm not certain what you're asking though
-
1
-
-
I have been asking for prices this week to have these measured in my town. Cheapest price in my city is around $270 for Vitamin D, calcium and PTH together. Unfortunately I can't afford that.
We have a public healthcare system and it is just about impossible to have Vitamin D measured there. Maybe once to make sure there is no deficiency but if you say you are using supplements the instruction is to stop using supplements. If I have had other health issues and high Vitamin D level, I have always been instructed to stop taking vitamin supplements before receiving any kind of care. Should I take costly lab tests on private sector, those would affect my care in public sector since they see the results. So it is kind if forbidden to have high Vitamin D levels over here.
Lucky ones have health care in private sector via occupational health or insurance but majority are under public health services. I was wondering how is this in other countries ? Finland has a good reputation about public health services which overall in practise ain't that great.
-
I was chronic, started busting in 2012 and managed to end my chronic state and attacks completely at first. CH returned in few very weak cycles. I have not had a real cycle since 2015 and manage to keep myself pain free with Anti-inflammatory regimen and preventative or abortative busting. But IF things get out of hand, this is exactly what I get - continuous pain. I thought at first that after 30 years I have managed to develop a migraine in addition to CH and neurologist also thought so. Now I know we were both wrong, it was CH moving on to another side of my head. I think it (or he/she) is migraine-like continuous pain and not in regular attack duration because I have too effective treatments and it's trying to break throught (usual spring and fall).
I wholeheartedly recommend investigating busting further, also Anti-inflammatory regimen if you're not familiar with it already and also Herbal protocol
-
1
-
-
What is your treatment ?
-
2 weeks ago I had my first real ping pong, an attack changing sides every day. It was super strange and it took me Day 3 to comprehend this is really Horton's (cluster). It felt like an effort for a cycle to start but managed to bust it back into remission. I thought I would ask if this has happened to you, has anyone had any ideas what could be causing it - apart from adjusting your hypothalamus with psychedelics
I'm having quite a lot of health issues right now (gut & breathing) and feel like these might have something to do with it. PF wishes everyone
-
And we just happen to have an Anti-inflammatory regimen for Horton's already
https://massivesci.com/notes/psychedelic-drugs-serotonin-psilocybin-dmt/
-
2
-
-
Thank You for all that you do Batch !
-
1
-
-
Although it's sad for you not to be able to meet in person, you can't imagine how great virtual conference is for someone 7000 km away who has been following all the bits and pieces possible from previous conferences ! Thank you for setting this up !
-
2
-
-
On 9/2/2020 at 10:49 PM, JessNapier said:
Also speaking at the conference will be Jonathan Leighton, PhD. He is is the Executive Director of the Organisation for the Prevention of Intense Suffering, a Swiss think-and-do tank he founded in 2016. OPIS engages in education, advocacy and communication on preventing the suffering of all sentient beings and the promotion of ethical governance.
I think Jonathan's speech is available to watch for everyone via link on OPIS Facebook page: https://www.facebook.com/preventsuffering/posts/3298997980180432
This is the cluster headache project we are also carrying on in Finland.
-
1
-
Postspinal headache and CCH
in General Board
Posted
Thanks @Pebblesthecorgi
Here's a brief update:
All the tests reveal nothing and they are clear. Fever is back up at 40C/104F and her erythrocyte sedimentation rate (ESR) is 140. Examinations have been very thorough. She is fearful for the nights. Getting spinal/cluster/migraine attacks but not non-stop anymore.
Unfortunately hospital tells her to wait a week until they will do a blood patch.