My chronic CH are the result of a virus

[Rainmaker]

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.  

[Rainmaker]

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.

 

[Rod H]

If someone was to ask me what caused mine? I would guess head trauma at a young age. That being said Ive been an outdoors person my whole life. So countless tick mosquito spider and bee stings. Could have caused mine I suppose. Truth of the matter is I dont really know and probably never will. I do know this place and the good people here have helped me get out of some really dark places in my mind. Just my .02. 

[81007]

I am just curious Rainmaker, but were you ever around cats?

[Pebblesthecorgi]

When suffering the unique, not describable pain that cluster headaches inflict it is natural and normal to grasp for whatever explanation makes sense at the time.  We seek to understand lunar cycles, barometric pressures, previous wrongdoings, higher powers, trauma and infectious processes when seeking an explanation.  In reality cluster headaches remain elusive in terms of definitive causes and universally effective treatments.  Cluster headaches were first described hundreds of years ago before food additives and  other entrapments of modern living.  Speculation, deduction and personal anecdote dominate discussions among the afflicted.   A sequence of biochemical events that result from a virus, parasite or bacteria theoretically may trigger a cascade leading to cluster-like headaches.  It is theoretically possible headaches could continued to be triggered after the disease has been treated but this requires a bit of imaginary thinking.  Viral encephalopathies are a completely different animal than C dif infections.  C dif usually occurs when antibiotics have disturbed the bacterial balance of the gut.  Time may tell if there is an infectious disease component to classic cluster headaches but it is more likely the headaches with an identifiable etiology like trauma, infection etc are mimicking clusters.  This is an important distinction because in these cases treatment options discussed here are less likely to work.  In the end information is good and worth discussing.  Who would have thought ulcers would end up being treated as a bacterial disease?  Or Lyme disease being a cause of human suffering?  Or HPV contributing to certain cancers.

Edited January 13, 2020 by Pebblesthecorgi

[CHfather]

Exceptionally well said, Pebbles'.

 

[CJW]

81007 has asked have you ever been around cats? why? I have no idea, but in an earlier post I have asked for a spreadsheet, excel format we can all ask any question under the sun, with all questions and answers being unanimous. my goal is to see any and all outrageous questions may be statistically tallied. I have seen the other apps for which are not on this site and are not followed as close as all other post here. I too believe my condition was caused my head trauma many years ago. you brake a leg and incur some sort of nerve damage the problem remains in the effected area. still a firm believer there is a common cause for all.

nobism site is nice for all that technical data, I'm thinking more of the outrages or common Q and A. sorry if I'm beating a dead horse. PK (post killer)  cya.

[81007]

On 1/13/2020 at 11:34 AM, CJW said:

81007 has asked have you ever been around cats? why? I have no idea, but in an earlier post I have asked for a spreadsheet, excel format we can all ask any question under the sun, with all questions and answers being unanimous. my goal is to see any and all outrageous questions may be statistically tallied. I have seen the other apps for which are not on this site and are not followed as close as all other post here. I too believe my condition was caused my head trauma many years ago. you brake a leg and incur some sort of nerve damage the problem remains in the effected area. still a firm believer there is a common cause for all.

nobism site is nice for all that technical data, I'm thinking more of the outrages or common Q and A. sorry if I'm beating a dead horse. PK (post killer)  cya.

I ask because I never had cluster headaches until I was around some barn cats. Particulary a feral cat. These cats are well known for harboring the parasite "toxoplasmo gondii" and this parasite is known for causing headaches. This parasite is also found in soil, cows, sheep,etc.

Forutunately most patients infected with T. Gondii are asymptomatic. Links below are to the suspected pathogen and various research efforts.

https://en.wikipedia.org/wiki/Toxoplasma_gondii

 

https://www.researchgate.net/publication/263441459_Idiopathic_intracranial_hypertension_may_be_caused_by_reactivation_of_latent_cerebral_toxoplasmosis_Effect_of_various_diseases_and_clinical_states

[Rainmaker]

On 1/13/2020 at 12:19 AM, 81007 said:

I am just curious Rainmaker, but were you ever around cats?

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

 

Edited April 7, 2020 by Rainmaker

[Rainmaker]

On 1/13/2020 at 10:10 AM, Pebblesthecorgi said:

Time may tell if there is an infectious disease component to classic cluster headaches but it is more likely the headaches with an identifiable etiology like trauma, infection etc are mimicking clusters.

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.

 

 

 

[CHfather]

2 hours ago, Rainmaker said:

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

Great news!!  Congratulations on your persistence, and thank you for letting us know.

I wonder whether you could clarify this a little, to add to our knowledge. Did your PF time only start when you switched from busting a minimum of every two days to busting several times a month?  Can you be more specific about what several times a month means? Roughly once as week?  Every five days?  How much of what substance were you taking?  Are you doing anything else that might be helping -- the D3 regimen, for example?

[Rainmaker]

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.  

 

Edited April 9, 2020 by Rainmaker

[CHfather]

Thank you!