Tony Only
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Posts posted by Tony Only
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1 hour ago, kat_92 said:
@Tony Only hey! Yeah it was around 4 hours and I still have a dull pain behind both eyes at the moment. Feels more like a shadow. I’ve never felt a throb like this. And it was coming in waves for 4 hours. I guess I’ll find out if it’s CH if I get it again at 8:30 tonight. I’m hoping it was just the soy sauce that I ate. I’m not sure. I felt dizzy and out of it at the time. Almost like my vision got a little blurry. I also slept until 11:30 today which I never do. I just felt “out of it”. It was odd
For me the "migration" period lasted over 6 months, pain did not follow any schedule like CH should and was more constant (lasting whole day) than attack-like. Slowly it formed into a new kind of CH on my right side. Kind of reminded me how this was 30 years ago when it began. It's creepy and spooky, I wish the damn thing would return home.
I too had dizziness, nausea, sweating - things that I never have with CH. It really feels like it is trying to break through something.I wish whatever it is it will pass soon for you !
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Hi , @kat_92 is 8:30 p.m. so did your headache last around 4 and half hours ?
I hope it's not a sideswitch. I recently asked about this on Facebook since so many fellow patients in Finland have had their CH change side this year or last year (and me too).
I have had CH for almost 30 years always on the left but around a year ago the Beast moved permanently to the right (gave first signs in 2019). I thought it was some kind of breakthrough attempt since I have pretty heavy duty treatments. It sure was weird having everything else move to the new side too, including muscle problems which I had thought had something to do with being right-handed
It took me a while to figure out it's CH since I had no clear cycle or even bad hits. Attacks were so strange I thought it must be some other headache. I could be having really bad shadows 24 hours plus, or the attacks were too long. Plus being the "wrong" side and all. My neurologist diagnosed it as migraine.
It was CH all along moving slowly to the other side. Still to this day my first thought always is "this is something else" because my brain just does not recognize this happening on the "new" side.
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I'm sorry I can't be of help in what you asked but wanted to comment on 5 day microdosing; surprisingly it's been effective for many people I know lately.
Have you tried doing the Batch regimen in it's entity ?
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I have only watched it halfway through but am already thinking how can psychedelics treat so efficiently this possible autoimmune and genetropic disorder and where can we find someone to explain that as well as Batch explains Vitamin D3 anti-inflammatory regimen here
Great video and so needed - I truly hope every Horton patient in Finland watches this AND people treating them.
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14 hours ago, cromestar said:
Prior to this current cluster I was a newbie sufferer of chronic fatigue syndrome (post covid issue). I was recently working with a chronic fatigue specialist before my cluster started. Covid/Chronic Fatigue seemed to re-activate dormant viruses within my system.
I was about to start some prescriptions prior to this cluster, but I decided to wait until the cluster was over. However, this has proven to be by far the longest, and least predictable cluster of my life and I am starting to wonder if the issues I was looking to treat for chronic fatigue are tied right into the severity of this cluster.
I'm sorry I can't say anything about the scripts you are asking and may even confuse you further but these are what came to mind for me. I think I have seen others think about the same things, post covid CFS (or sometimes just regular CFS) somehow interacting with CH.
One treatment I remember seeing often in finnish CFS sites is LDN (low dose naltrexone, an immunostimulant) and (in there) I have seen claims that it would also help CH. I have used it myself for Chrohn's disease, it was super efficient but turned out later I do not have Chrohn's - at least not a typical one. I am personally sceptic that it could help "classic" CH but maybe when there's some kind of relation to CFS ?
One female CH patient in Finland who received help for CH via "carnivore diet" wrote that she has mast cell activation syndrome, which is the condition that triggered CH in her case, according to her.
I hope you find solutions and start feeling better !
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I myself and my living family members gave blood samples for study of genetics in Horton's neuralgia few years ago in Finland, but this is probably a different study.
Still makes you think if Vitamin D is affecting the genes in question
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2 hours ago, xxx said:
Please save all the iherb links that result in the right products as there are others there in Finland facing the same problem.
Thank You Batch - will do. Couple of people have sent me their lists, I will save them and share the products here.
We have a system where there's an annual maximum for healthcare costs (including pharmaceuticals) for an individual. While that's great, one result is using vitamins (especially if bought locally, lightweight but pharmacy grade) being way more expensive than any amount of any prescription meds.
This together with not getting approval from your doctor is an (annoying) issue over here.
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Does anyone get all their vitamins and co-factors in the anti-inflammatory regimen (Batch regimen/Vitamin D protocol) from iHerb ?
I have been struggling with this for years, buying locally (in Finland) those that I can find and buying from iHerb the ones hard to find locally (vitamin K2 and such). It's been difficult since our local products are very lightweight for this use. For the first time I am down to 6 different producs (Vitamin D, vitamin K2, magnesium, fish oil, 2 multivitamins) but I think I am still getting way too much things that are not required in the regimen.
I have been thinking of buying everything from iHerb (now that finnish customs will tax every shipment anyway) and wanted to ask if you have been able to build the whole regimen easily from products available at iHerb ? Please list the products if you can. This could help others too in different countries since iHerb is shipping all around the world. I think there are other countries where some vitamins and co-factors are hard to find too.
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I too would say show it to your doctor. I think solely as cluster related it's rare to happen to a degree it's affecting your vision, but it does happen. I would estimate seeing that around 1 in 500 clusterheads (but don't know if there are other things causing it) ...
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Thank you @jon019, @CHfather, @Luis
Interviewing X's daughter further there's a special place (garage) where X spends lot of his time smoking and doing crossword puzzles so there might be some of those environmental / allergy issues right there.
I did my searching and looks like we don't have diphenhydramine available in Finland anymore. I'm not sure could you get that imported if your doctor writes a special license for that.
X has started Batch regimen (anti-inflammatory regimen) today on a 2 week loading schedule.
I recommended melatonin since nights are worst but not having hopes up for that one. One thing that might help is finnish Acetium (L-cysteine) that some heavy smokers have found beneficial. Sometimes there's even more acetaldehyde in their diet so it could cover few issues at the same time.
Keeping my thumbs up
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2 hours ago, Vipul said:
After a pain free month, and just when I thought that the homeopathy meds were working, the attacks are back. This is my forth cycle this year. Looks like I'm going from episodic to chronic. Getting just a month between cycles. Things going from bad to worse for me.
Love
Vipul.
Aww, that's sorry to hear @Vipul
Possible changes in CH are not a life sentence. You can go from chronic to episodic too. I just found your other thread and will reply to that one.
Wishing you strength
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Thanks for the link @CHfather !
If I were to think that all the CH pain and pain related signaling is traveling through these old neuronal connections, and when new neuronal connections are established they don't know what CH is. But to us that means these new connections are free of pain signaling = PAIN FREE
I love the image when beast is overrided and overtaken and it stands powerless as distance grows in the rear view mirror.
Also an important publication for suspicious minds
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44 minutes ago, jon019 said:
....wow....that's a tough one. Any thoughts or consideration to allergy mediated (molds,chemical) in his home environment? Has Benadryl or similar been tried? A food log with selective deletions in diet?
Thanks @jon019 !
He was actually away from home in motorsports event and was unexpectedly pain-free which might suggest towards some environmental factor.
I don't know about his diet other than that there are no clear triggers he would be aware of. Good thing to consider !
I will pass along your suggestions, thank you again
Edit: I think our european Benadryl is somehow different from yours (and thus useless). Benadryl 8mg sold in here is acrivastine.
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We have been trying to help an older fellow clusterhead who is not on the internet with a little team of buddies. The challenge is a presumed cluster cycle that does not seem to respond to treatments that would work for most. I guess I am asking if someone sees some other condition or cause between the lines or has some ideas what should be checked to outrule any other causes for such a tenacious situation.
Here goes ...
Case is with male patient, I just call him X here, close to his seventies. Cluster headaches started in 2018 when diagnosis was set right away and incredibly lucky X also received oxygen as an attack treatment right away. Head MRI also taken in 2018 and it was ok. He has only one minor neck injury in his past, very large operations with his teeth (several teeth removed) when cause for his headaches was not known. 2019 headaches came back and it was a horrible year, CH being even more severe than now. 5-6 steroid courses did not terminate the cycle and this cycle may have been terminated with RC seeds but not sure. Here and there X has been taking Vitamin D. Headaches were gone for almost two years and now have returned in change of 2020/2021. So X has experienced only around 3 cycles in his lifetime.
Current cycle is pretty bad, attacks coming around every 2 hours, for maximum of 15-16 attacks per day (attacks may blend in into one another). I have his attack diary if it helps. Current medication is only oxygen and Diclomex rapid 50mg (diclofenac). No other medications in use. X has been trying to terminate this cycle with psilocybin (mushrooms) and especially before using mushrooms attacks were happening like clockwork. Headaches seem to react to busting, but not by calming down, by increasing frequency and severity. This was expected at the beginning but IMO should not be happening anymore and it is. 4 doses have been
1st dose: approx 1-1.25 grams
2nd dose: approx 1.5-1.75 grams
3rd dose: approx 1.5-1.75 grams
4th dose: approx 2.5-3 gramsI asked him could the cycle be happening like it is now if he had not been taking mushrooms and he said probably yes. This is a man who has never used psychedelics but he felt the 1.5 (-1.75) gram dose being more or less the same than the 2.5 (-3) gram dose.
X will probably keep on busting and his daughter is delivering him vitamins this weekend for Batch regimen (anti-inflammatory regimen). Some vitamins are hard to find in Finland but especially so in the countryside where X and his wife are living in.
I'm personally wondering
- Since there are no blockers present, is there such a thing as very personal reaction to psilocybin that even 3 grams would not be felt
- Is there some another condition that could be mimicking CH symptoms almost exactly but would not show up on head MRI (something spine related perhaps like cervicogenic headache)Any ideas or thought would be very much appreciated
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The title, "Educating Health Care Professionals" is not possible done as single patients, spouses, family members. Join the nearest local headache organization, create a CH sub-group if needed and working as a network you can and will start making a change. When we are giving feedback or demanding a change after an ER or doctor's visit backed up by our local and possible mother organizations patient after patient that will be noticed.
We seem to be very fragmented, isolated and alone in many countries. And at the same time each of us are dynamos.
Pf wishes to your family
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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.
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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.
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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.
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4 hours ago, trjonas said:
Here's to complete healing!
Yes ! To complete healing !
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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*
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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.
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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.
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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
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Any ideas or thoughts on resilient cluster cycle
in General Board
Posted
Things are looking pretty bad. X is now almost three weeks in doing Batch regimen (anti-inflammatory regimen) on 2 week loading schedule. Since things were not improved after 2 weeks, I adviced him to continue third week on 20,000IU/day dose. Still no progress. I messaged X's daughter to try and get 25(OH)D measured again. Before starting Batch regimen it was 85 nmol/l.
I am starting to wonder is this "natural" cluster headache at all since it is not responding to MM or Batch regimen. His head MRI is clear but could it be some spinal issues? Previous relief might have come from steroids or LSA. His symptoms are textbook cluster and now averaging on 10 severe attacks per day (there are probably same attacks reactivating short time after using oxygen). Does anyone have any questions that I could ask him to try and figure out what this is?