Rainmaker

Hi all, now that I have found relief, I thought I would circle back and post about it here. I am not a doctor but this is my experience and obviously is not advice. I got a terrible 'flu' when I was 15 and got lots of persistent symptoms including daily brain splitting headaches that lasted for 45 years. That's the very abbreviated version. My headaches had a lot in common with cluster headaches but also had some differences. Busting was almost the only thing that helped me but I felt terrible when I was doing it so I didn't do it as often as I should to keep them at bay. I would get really bad vertigo for hours when I busted. Oxygen didn't help me at all and Vitamin D messed up my thyroid balance and caused other problems so it was a no go for me in larger doses. My doctor recommended low-dose Naltrexone and it has literally changed my life. I only get a few headaches a month and they are much more manageable. Sometimes, Tylenol at the beginning is all I need to get rid of one. That is unheard of for me. Sometimes I get the symptoms of a headache (tearing eye, swollen sinuses, stiff neck, etc) but no pain. While I know this is not the case for everyone, I have zero side effects from it and I know that many other people have the same experience. LDN is typically given in much larger doses to help people get off opioids. The typical dose for that is 50 mg and up. It is also given off-label for people with auto-immune illnesses, headaches and other uses, at tiny doses beginning at 1 mg. I can not stress enough how different my life is now. Wishing all of you a similar future.

I would say I started seeing improvement around early March. I tried the Vit D protocol but had to stop because I take thyroid meds and I forgot that there is a link between Vit D and thyroid absorption. The high D levels threw off my thyroid and I was getting crazy heart palpitations, fatigue and other symptoms. I am back down to a mere 1000 IU daily. The only other thing I did that may have positively contributed is I went off a med I was on that can cause headaches in some people. The truth is I was getting chronic headaches long before I ever went on it in the first place so I doubt that's the cause of the improvement, but I mention it anyway.

You may be right about this Pebbles, we simply do not have enough information yet. What I know is the following, the headaches started with the infection. While they have most of the defined symptoms of cluster headaches, there are some differences, so it is possible that they are not classic 'cluster headaches'. Though as to that, I wonder if it is really possible to clearly define cluster headaches in that way or if like many other syndromes involving the human body such as anxiety and OCD, etc, or autism and Aspergers, etc, there is really just a spectrum with a lot of overlap in a lot of areas. While there are many people whose headaches match the cluster description perfectly, there may be many others whose headaches differ slightly in one way or another but who could still could benefit from busting. This has been true for me. I tried busting according to script but had difficulty because I was chronic and got headaches every afternoon or evening and so I found going 5 days meds free to be very difficult as the pain would increase in severity each day I didn't medicate to the point they would become a 24/7 event of ever increasing intensity. So I modified the protocol and it seems to be working. I started busting a minimum of every 2 days and I just busted more often figuring each bust might be less effective but hoping that there might still be a cumulative effect. It has now been a few months of busting several times a month and for the first time in YEARS, I am going up to 10 days PF with not even a shadow or a twinge or a suggestion of a headache. This is unheard of for me. Normal for me was to either be recovering from a headache, have a headache, or be getting a headache at all times. I consider 10 days PF a life-altering success and it is not important to me if I have classically defined 'cluster headaches' long as they are gone. I hope this is not an anomaly and I will continue to try and build on this success. Right now, just happy for what I got, and that is HOPE. To be honest, sometimes I feel like there is a proprietary feeling among some people on this site about who gets to be in the club, like having clusters is a badge of honor. No interlopers allowed. And then there are many many more who could not be more welcoming, supportive or generous. I am deeply grateful to those of you in the latter group. You helped me when I was really down and thinking I couldn't go on and gave me the information I could not have gotten anywhere else to get a foothold on this beast. Thank you, thank you, thank you.

I grew up with cats and had one or possibly two at the time.

I will 'keep that in mind', although I am not sure how I am supposed to do that as I was only trying to help by sharing my personal experience. I think many here would agree that doctors don't know everything there is to know about CH, or vector borne diseases for that matter, and I was certainly not saying that all CH are caused by them as you implied, just that mine were, and on this, you are not qualified to weigh in. So please don't put me down, because as I stated in another post, I came to this site because I am in a very bad place right now and at the end of my rope. Being scolded for sharing and having my personal experience discounted by you isn't helping. I have read several of your other posts and I can tell you are a caring and compassionate person. Just not feeling it rn.

Hi CHFather You mentioned that you have a curiosity about Indomethacin so I thought I would weigh in that I took it for awhile with zero results on the headaches. You are correct that you must be careful about damaging the stomach lining however what doctors don't tell you is that the meds to protect your stomach can cause a nasty condition called SIBO. SIBO is an imbalance in the flora of your small intestine that leads to bloating, diarrhea, constipation and other gastric problems, and is very difficult to reverse.

I just switched my Amazon Smile account recipient to be Clusterbusters Inc. Thank you for all you do for us.

Here's what I found on this topic. "In controlled studies with EMGALITY up to 6 months (Study 1, Study 2, and Study 3), the incidence of anti-galcanezumabgnlm antibody development was 4.8% (33/688) in patients receiving EMGALITY once monthly (32 out of 33 of whom had in vitro neutralizing activity). With 12 months of treatment in an open-label study, up to 12.5% (16/128) of EMGALITY-treated patients developed" Translation - yes it can stop working but the incidence seems low..at least for the first year. After that, who knows?

I have been afraid to try Aimovig because in some people it can make HA's worse. Honestly, I don't think I could endure that. Does anyone know if Emgality can have the same effect? I have been having trouble finding an answer to this and frankly, I believe what I read here among you fine folks more than anything I read anywhere else.

I am writing this in the hope it is helpful for some of you. My headaches, and other symptoms were most definitely caused by a virus. Here goes. I was an exceedingly healthy and active child and teen. At age 15, I became very ill with what we thought at the time was an acute but typical flu-type illness. High fever, aches, chills, weakness, headaches. For a week or so, my mom would wake me up to hydrate me and try to get some broth into me and then I would pass out again. I was the only one in the family who got sick, so not contagious. I grew up in the woods in New Jersey in the middle of mosquito country. The year was 1975. I recently found out there was an outbreak of a particularly dangerous mosquito borne disease in New Jersey in 1975 called Arboviral Encephalitis, aka Eastern Equine Encephalitis, St. Louis Encephalitis, Western Equine Encephalitis, La Crosse Encephalitis and Powassan Encephalitis. "Many people who survive EEE develop residual, long-term, mild to severe neurologic deficits." Coincidentally, this past summer there was another outbreak of this in several US states. Here's more info on it for anyone interested. https://www.nj.gov/health/cd/documents/chapters/eee_ch.pdf The first night of the 'flu' I got a massive headache, like an ice pick behind my right eye (uh huh, yeah, I know right?) and yup, you guessed it, I have gotten them ever since. In my case, I have chronic headaches that occur daily at or around the same time; late afternoon, evening or night. The times are consistent every day but they tend to migrate over periods of months. My right eye tears like mad, my right sinus swells shut, my neck gets stiff, etc. After the acute phase of the flu subsided and my temperature went back to normal (low normal actually), the symptoms never went away. In addition to the daily headaches, I developed massive chronic fatigue, intense brain fog, fibromyalgia, food sensitivities, etc, etc. My life as I had known it ended that day. I had to modify my high school schedule so that I could take the classes I legally needed to graduate in the mornings, be home by noon, crawl into bed, wake up at 7 to eat and do homework and go back to bed. My greatest accomplishments will always be getting a college degree in that condition and raising two healthy, well-adjusted young men (neither of whom get headaches). Many years later I got a dangerous intestinal bacterial infection (C-dificil) that landed me in the hospital for 4 days on massive doses of IV antibiotics. This was a turning point in my life and went a long way to eradicating the fatigue, brain fog and fibromyalgia, but not the headaches. The headaches remained consistent but the other symptoms could be kept largely under control as long as I don't move much or exert myself (I am oversimplifying for the sake of brevity). As I mentioned, I am writing this in the hope it is helpful for some of you. Feel free to reach out if you have questions or if I can help in any way.

https://clusterbusters.org/forums/profile/24003-clustercured/ Did your headaches stay away over time? Can you please update us?