Vipul

Thanks, any recommended regulator source?

Hello, I recently tried Oxygen therapy and it works to abort my attacks. I have bought 4 10L tanks, a regulator with a humidifier bottle and a non re breather mask. I have the following questions. 1. Is the humidifier bottle required? I don't see mist people using it. 2. 0 to 25 lpm regulators are not available here in India. The ones available are supposed to go to 15 lpm but the humidifier bottle starts leaking O2 beyond 5 lpm. Everyone I speak to suppliers/ medical staff, they insists no one needs more than 5 lpm. Ive stopped even trying to explain to people anymore. Can someone please give me a link for a good 0 to 25 lpm regulator. 3. Or, should I just get a 0 to 15 lpm regulator without the humidifier bottle? I'm so glad I finally tried the O2 therapy. The constant fear of the next attack is gone coz I know I'll abort it before it reaches extreme levels. Pain free wishes to all. Vipul Nair Har Har Mahadev

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.

Hi, in India, the homeopaths mix up the medicine themselves. So dont know what it is. But since he's a friend, I will ask him.

Hello, About 2 weeks back, I was suffering some very nasty attacks. 2 to 3 a day each lasting an hour reaching extremely high pain levels. I happened to speak to a friend who is a homeopathy doctor. I was surprised to hear from him that cluster headaches were curable in homeopathy. He spoke to me for an hour on everything except my attacks including emotional issues that I may have had in the past. He sounded very confident. He gave me some meds. Next day onwards my pain levels came down. 3 days later my attacks became less frequent. 2 weeks into the treatment, my attacks have almost stopped. I get an odd minor attack once in a while but no full blown attack now. I know fully well that CH is never going to go away. But I am pleasantly surprised at the effectiveness of homeopathy in treating CH. I will continue the meds and report feedback here. Pain free wishes to all. Har Har Mahadev Vipul

Thanks for the detailed info Jonathan. I tried looking for the O2 set up initially. O2 was easily available but no supplier here was able to arrange a 10-15 lpm flow rate which I believe is required. In fact they thought I was crazy as this kind of flow rate is used only in an icu here. Post covid I am sure I will be able to find enough options for O2 as lots of suppliers here have imported high flow regulators. Over the last 3 years, my cycles have kept on increasing and am unable to predict when the a cycle will get over and when the next will start. First year I had 2 cycles, one in July/August and the other in dec/jan. 3 cycles in the second year. This year my cycle stops for a month and starts again. Shiver to think I am turning cronic. I am going to get the nasal spray and the 6mg injection today. Will first try the nasal. If it doesn't work, I'll try the injection on the next attack. I need to look up videos on how to self inject as well. Is it tough? Love and regards Vipul Har Har Mahadev

Hello CHfather, I will try the nasal spray first and hope it helps. The thing about the injectable is that I am not able to have any of my doctors prescribe it to me. So I will have to get it and use it without prescription. But lemme first get the spray today. Very informative write up on reducing the injectable dose as well. Love and regards Vipul Har Har Mahadev

HI Spiny, thanks for your reply. Exactly as I thought. What about the nasal?

Hello, I am in the middle of a very bad cycle. I have never tried sumatriptans (Imitrex) in any form but I intend to now as the pain levels are getting to be more and more unbearable. Unfortunately my doc, insists that I try nasal and oral Imitrex first. I have read on this forum as well as other sites that only a imitrex 6mg injection works to stop the CH attacks. Should I waste my time with an imitrex nasal spray? Does it have any effect? Or should I just go ahead and get the injection without a prescription (possible). Any advise would be appreciated. Love and regards Har Har Mahadev Vipul

Hello Angels, I understand the difference between Trigeminal Neuralgia and Cluster headache. I also understand that this forum is for CH. However, some people's CH does get diagnosed as TN and hence some of you may have more information regarding this. A friend is suffering from Trigeminal neuralgia is is really struggling with the medications (anti convulsants) and the pain. Was wondering if busting works for Trigeminal Neuralgia or if anyone has any knowledge of any alternate treatment/ medicine for this condition. My friend has no faith in traditional elopathic medicine. Any tips would be helpful for her. @CHfather Love Vipul Om Namah Shivaye

My last cycle started as the worst so far at 8, 9 and even 10 and lasted for 2 hours. An hour of relief and was back to crazy levels of pain for another 3 hours. With 5 to 6 attacks a day at 8,9,10 I was searching Google for "painless ways to kill yourself" Thankfully, I reached this forum, where many angels reside and I now laugh at myself for having given up on life. Love and pain free wishes. Vipul

Hi, I feel the same. In fact, I have stopped using my right side, which is the CH effected side for calls. I usually talk on speaker. I am 100% sure that it triggers the start of an attack for me. Love and pain free wishes. Vipul Har Har Mahadev

Hi, Spoke to a 65 year old lady today who had been suffering from Episodic CH for 12 years. She says she now has very minor pain every few months and has not had a full on attack for 2 years. What's she did was a juice diet for 3 weeks to detox and then a regular dose of Lion"s mane and Reishi mushrooms. She strongly suggests I follow her line of advise. Now, is this an unheard of line of alternative treatment or has someone experimented with this here. Love Vipul Har Har Mahadev @CHfather

Hello all, anxious to know any update on this. Love Vipul

Hello, and am so sorry to hear about your condition. From what I've learnt, an lsd busting dose needs to be about half of a regular dose. That would be around 50 to 60 ug. Also you need to do it 3 times 5 days apart. Your brain a few days to be receptive again. RC seeds have worked for me. The D3 regime is worth doing. And ginger works great for shadows. Many swear by high pressure O2. Have no idea how your depression meds may interact with busting. You're in the right place and you will get enough advise to help you thru this. I was where u are just 2 months back. You can bust the beast. Pain free wishes to you. Love Har Har Mahadev

Hi, Read another case study. This guys CH was caused by acute maxillary sinusitis. Exactly what's written in my report??? For some reason my Neurologist didn't feel the need to explore further??? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3795873/

Thanks @Brain on fire and @spiny I did get an MRI but wasn't sure if they covered the sinus area. But have since read the MRI findings again and they did cover the Sinus as well. It mentions a neurovascular conflict of the trigeminal nerve and also mentions a minor sinus issue at the end of the repot. Attaching the MRI findings fyr. Love

Hello, After my 3rd dose of RC seeds I was still getting very minor attacks and so I had a 4th dose. Situation is the same with 1to 2 very minor attacks during the day. Have had 15 pain free nights on the trot. Am very happy but a little concerned as it has not left me completely. Since the last few days, for the first time since the onset of CH,i have a very strange feeling deep inside my right nasal track, the same side of my CH attacks. It actually feels like an injury deep inside. I somehow felt it could be connected with my CH. So looked around on Google and found this https://www.hindawi.com/journals/crinm/2018/5850286/ Cluster-Like Headache Secondary to Sphenoid Sinus Mucocele, case study @CHfather @Brain on fire @spiny @Batch do you suggest ii get a scan to rule this out? Love Om Namah Shivaye

Hi, found this very interesting Ayurveda diagnosis and treatment for cluster headaches. Attached fyr 2191_2194.pdf

Hi Tony, I'm from india and so much more exposed to Ayurveda. My brother was born with very serious egzema all over his body. He was weak and i saw him struggle with it all out childhood. My parents tried everything including Ayurveda oils and medicines but nothing seemed to make any difference in his condition. When he was 18 we met with a Vaid who felt his pulse and cured him in 2 weeks. He then regained his health and joined the Indian army. I went to a Vaid myself for my CH last month. He felt my pulse and said that he was not able to figure out anything as there were some bad medicines in my system. He advised me to stop all medication, wait a month and go back to him. Only then would he know if he could help me. At the time i was on Prednisolone and Verapamil. Have since stopped. I will visit him again and if he is able to help me, i will report back on this page. Ayurveda cannot be overlooked for any sort of treatment. Om Namah Shivaye

Been seeing Wim Holf's interviews and his achievements on you tube. His method seems to be quite simple and he's proved crazy stuff scientifically. Managing to control release of endorphins, dopamine etc in the brain. Wondering if his method could help with CH?

Hello, you've either never had CH or are not being honest. It's impossible that you have a cure and would not help others who are suffering this miserable condition.

Hello, Have been suffering from CH for over a year. Was prescribed a 15 day, reducing dose Prednisolone course each time my cycle started. Have done 4 courses in the last 10 months. Was also permanently on verapamil. I personally feel that the medicines have made things worse as my current attacks are more severe in intensity and duration. Today, i visited a very well known and highly recommended Hakim ( traditional Indian Ayurveda doctor. His normal way of identifying a patient's condition is by feeling your pulse. This is how he diagnosed a diabetic patient who was there before me. He felt my pulse and went blank for a while. Then said that he couldn't figure out anything as there is some very harmful medication in my system coz of which he cannot even figure out my condition. Upon telling him what i was on, I was advised to stop all medication and give a month before seeing him again. Only then would he be able to tell me if he had a cure or not. He apologised as he was not able to help me as of now. Fortunately my prednisolone course ended a couple of days back. Have also stopped verapamil. Will wait a month and will see him again. Meanwhile, i am expecting RC seeds in a couple of days. Waiting eagerly for them and will try busting as advised in this forum by the experts. Will report progress of busting. Lots of pain free wishes to all. Love Om Namah Shivaye