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Here's an especially pertinent quote from Bob Wold on the the topic: " We have had the medical records of a couple actual patients that went through this treatment, with the permission of the patients, reviewed by one of the top headache specialists in the USA. He reported that the procedures used are unnecessary, ineffective and dangerous. This includes both the surgeries often involved (numerous) and the types of medications often used in large doses." "There are many people that report either a trigger to start a cluster cycle or an unexpected end of a cycle following all sorts of surgeries. From giving birth to minor surgeries to major surgery. No one knows why surgery can have this effect but in my experience it appears to probably be related to the different types of anesthesia used. Local or general. This could be a connection to why some people get relief with Ketamine. I would never recommend someone in cycle to schedule open heart surgery as a treatment for cluster headaches, even though you might wake up from surgery out of cycle." To be clear, the treatments offered at this SA clinic do not include open heart surgery, but the number of stitches I've seen on patients is probably close to the same number." "This is just one theory of why some people may report even temporary relief from these treatments but most experts that have looked at these treatments deem them as dangerous." Bob Wold

I have her contact information and yes, she is still pain-free. I can contact her again and maybe get her to reply on this form as to the effectiveness of this treatment but yes, it worked for her still.

Redbeard, one thing you may want to look into is the D3 protocol. use the search bar in the upper right corner and you will find a lot of information on it. Developed by one of our members (xxx) AKA Batch. Just over the counter vitamins.

Unfortunately ever since my very first cycle back in 2020 I have had pretty bad shadows year round. Some days are much worse than others, especially if I forget to take the curcumin and turmeric. I mentioned the new users banner because there are many things you can try to not only deal with shadows but also possibly skip through a cycle. I can elaborate a bit more if you like but it will require your post to be moved to something like theory and implementation..

This lady's video has been on the internet for over 8 years now and she was a member of this forum. Can anyone please find her and find out how she is doing? Is she still pain-free?

Andddd a quick update- the headache is gone! About 45 minutes after I took the oxymetazoline nasal spray (also took one Benadryl and laid on an ice pack). I'll still try it again next time, earlier in the hit, and without the Benadryl and will report back but feeling hopeful! I think this cycle is allergy-related as I've had to miss 3 months of allergy shots due to switching insurance and needing to find a new provider. Allergy symptoms have been much worse. I noticed shadows as my sinuses got stuffier and stuffier. So I guess it makes sense that the nasal spray would help?

Hey Readbeard, Yea I get really bad shadows pretty much all the time as well. At times I feel as if I have vertigo Some see them as a precursor to a full blown attack. For myself they are somewhat a part of my daily life. I do get a good deal of relief from taking a daily dose of curcumin mixed with turmeric and others have decent responses to ginger capsules. There are other methods of dealing with your CH that you may want to check out (some of them have helped me with my shadows as well) that can be found by clicking on the blue banner at the top of each forum page (new users please read here first).

Firstly, I am glad you found any relief at all. The number one accomplishment I can't take for granted for any CH sufferer is relief. However, it's still to early to use the word cure. I have had an uncle who is currently in a 15-year remission, and even he doesn't know what happened. I believe if more stories such as yours are empirically followed and can stand the rigorous scientific scrutiny, then we shall have all the solutions we ever need. But first, we have to document it and follow it up. The past threads about this doctors methods indicated that the results were mixed. Some people got relief, and others didn't get relief. You mentioned that he is now using a new technique, which is good to know. Currently, we have you his patients, we have him and we have time. Let's continue to keep the records and see where it leads. Just know that even though I, for one, appear skeptical, I am cheering for your relief and hope it sticks. Now that you are going back to South Africa, please ask the good doctor to put up his work for international peer review. That would be a nice step in the right direction. I know this disease is not statistically significant enough to warrant a lot of attention from the sceintific community but I believe the solutions are out there and we should keep looking.

I understand that , But the word cure shouldn't be used , it give false hope

I’m sorry to hear that my friend I promise I understand. I hope you can find some relief. I’m in no way trying to argue. I’m just trying to share my experiences because this was the only thing that worked. They gave me more medicines than a lab rat none of it worked. All did was make me crazy And worse. I am going to go back hopefully in the next few weeks. If work allows to get my last two spots on my left side zapped like I said, I went from five screaming into a towel category 10 headaches a day for four years straight I had 10 months of pain-free living now my left side , maybe once a day I get a category two it was nice to send the oxygen bottles back that I lived next to for years as I’m sure you do. Thank you for your feedback. I hope you can find some peace and pain-free. I will pray for you.

All im saying is , if it was as easy as booking a flight to south africa and visiting the miracle doctor Shevel , every CH sufferer would be banging on his door , but we're Not !!!!!!!!!

Mate I'm not saying I don't believe you , I'm just saying from my experience their i s no cure , and yes I have CH have done for 44years , and yes I've had a rope around my neck on 3 occasions , my cycles last 6 months at a time 8 to 15 attacks every day and through the night , , I've banged my head on the floor the wall I've even had my partner knock me out with a frying pan , I also stab myself in the leg with a knife just to try to put the pain somewhere else , so yes I would say I have experienced CH ant it's worst !!!!!!!!!

Sorry not having a go , just don't like people being given false hope

So really your not cured !!!!!!!!!

I do not doubt your story one single bit because it is your story. I am hoping and praying you keep pain-free no matter what worked. However, I would like you to know there are remissions. I have an uncle who has been cluster headache-free for 15 years or more years! Even he doesn't remember what he did. He says my Dad had them worse too and that My grandfather had them until he passed in his 80s. I am increasingly finding people who find unexplained relief or remissions, but I will not be calling anything a cure for now. Please follow this post up with the great news of your relief every now and then. I am interested in your progress. In my first encounter with remission, I was as happy as myself. I would often think that I had discovered the winning formula only to go back to the drawing board during the next season.

Wow, it's been quite a spell since Danny boy put up a post about Quack Shevel!! If you're new here please don't get your hopes up over this BULLSHIT!!! DD

There has been plenty of discussion of Dr. Shevel here, most of it quite harsh. For those who are new, here's a sample thread, with includes an extensive response from Dr. Shevel: https://clusterbusters.org/forums/topic/2898-dr-elliot-shevel/page/3/ Of course, Douglas Ward, you have no idea whether you have been "cured." We wish you well. Even considering the resistance of conventional medicine to new ideas, it does seem quite surprising, doesn't it, that only one person in the world is practicing this "cure"?

Going off your screen name and the Dr your seeing now I am guessing your in the NE area. If you are in the Philly area I do have a good DR I would recommend at Jefferson. He is very familiar with this site and is willing to work with you on how to best treat your situation. Get that oxygen setup now so you are ready for the next round to land if and when it does. D# and everything else CHfather sent to you will get you started and in a good place. Emgality has helped some but from what i remember it was 3x the dose of migraine users, I had 3 100mg auto-injectors that I had to take once a month. I gave it 3 or 4 months and didn't help me much.

I've been using a generic oxymetazoline nasal spray for quite a while now with good results. It's best to use it as soon as the headache starts.

I see that its been over 3 years since I posted this in 2018. My cluster headaches only happen in periods of 2 - 4 weeks in spring and fall. Since 2018 I have used nasal spray to combat them quite successfully. I found out that there is a certain nasal spray that works and some other dont. I have used Drixoral NO DRIP spray and find that its the only one that works. I believe the only reason why it does work is because the medicine sticks to your nasal passages and keeps working better than other cheaper sprays that just drip down your throat. Im in a middle of a really bad cluster period right now, and I have been using cheap nasal drops, guess what they did not work. I almost gave up until I went ro drug mart and got No Drip spray last night. So this morning i was awakened by the headache onset and I sprayed 3 good long prays in my left nostril, 5 minutes later the pain was gone. I still had the restless feeling you usually get, so I took my dog for a long walk, came back and started doing chores and fixing stuff around the house. This is a miracle medicine that works wonders, where yesterday my headache started at the same time at 7am and I was in a disabled state for half of the day. Today im feeling like being born again lol

I just spoke with Justin- he sold his BOL patent to Better Life. The current status of BOL seems that it will be taken forward for treatment resistant depression. At least it will be cleared in a phase-I soon(ish) if better life raises capital. At that point, I'd think that some cluster sufferers could enroll in their depression trials. The caveat is that Savant HWP holds the method patents to use BOL for Cluster. If we could get them to do a deal with Better Life, things look very promising. -J

Pulling this old topic out of the closet. It's a good topic for discussion. There is plenty of research showing how histamine can play a role in cluster headaches. The Diamond Headache Clinic has for decades used a histamine desensitivevation (sp) program in their in-patient unit. It's a long process but many people have had good results in breaking cycles this way. (as well as plenty of failures along the way) Many of us prior to getting a proper diagnosis rely upon OTC antihistamines that do provide some relief. You end up needing more and more. In todays world, I'd probably be investigated for having a meth lab with all the OTC antihistamines I used for my clusters. ( the first 4 years i had a "sinus infection") Anyway, I was sent this recent article about histamines that I thought someone may find helpful. (Ignore the ads for wine ;-) https://drinkpurewine.com/blogs/histamine-intolerance-side-effects/histamine-intolerance I hope everyone is having a great fall, at least weather-wise if not other areas of life. Hang in there people, Bob

I've been reading up on histamines and how this causes CH but it's difficult to find good sources with easy to understand explanations. Does anyone have a good one ? My question is: if we know histamines are the problem, isnt there anything we can do about it? Taking out high histamine foods doesn't seem to be enough since stress and pollen can also be a factor and there's probably more. And mast cells seem to become immune to meds like benadryl. So how about increasing diamine oxydase which decreases histamine ? Dao deficiency is a primary cause for migraines and vascular headaches. I assume The Vitamin d regimen is helping on this because vit d decreases histamine but also because it facilitates absorption of zinc and magnesium which are essential to making dao. But has anyone tried dao supplements ? Or does our body get used to this over time as well ? See this research as well : http://www.medscape.com/viewarticle/811920#vp_1 sorry if this was mentioned already earlier in the thread, I'm at work and didn't have time to read everything properly.