I mentioned earlier, I'm fairly new to this cluster life. I was diagnosed on August 8th, I won't forget it because it was the first day in months that the diagnosis seemed accurate. I'm sorry if these questions are not what you normally deal with but my curiosity is never ending. Which brings me to the first question..

I was wondering if anyone else was told they had a sinus infection on their journey before being diagnosed? I understand the likelihoods and statistics that are used in the E.R. but over that first summer I had a "sinus infection" and eye infection, amongst numerous other things.

I have heard cluster headaches are fairly rare. Ive heard anywhere from 1 in 200,000 to 1 in 100,000, less than 1 percent and even a theory that it could be every 1 in 500 people. To me I don't see how the last statistical theory could be accurate based on the fact I know well more than 500 people and I have never met anyone that has heard of or has cluster headaches. Question 2, and this is my main question. How often, if ever do you meet another person that is a clusterhead. I can only imagine meeting someone someday and somehow they work into the conversation that they have been diagnosed with cluster headaches. I guess my youth may leave me a little optimistic, but I imagine we would become instantly good friends by finally finding someone that understands and has experienced what I can only describe to people. 

And finally, I'm going to see Dr. Robbins on Friday and I have read a lot about the Vitamin D/omega 3 regime, I know this probably sounds lame but I was curious as to how I should go about bringing that up. I think its that fact that he is a medical expert and I'm just a twenty year old kid, but I think I may just ask if he has heard/ever tried it with anyone. Interestingly enough my older brother is on prescription vitamin D tablets because he was tested and was so low. I just got my blood work done earlier this week and I will know the results Friday. I'm not in cycle but I ask because I have been having numerous shadows, almost constant for the past few weeks and Its slowly beginning to drive me insane, a little bit at a time. I've heard debate that any shadow is a minor cluster, but it seems like they are pretty numerous throughout the day. Ive seemingly lost all other pain to my head, such as a normal head ache, hunger, feeling tired. All these pains seem to show up as "shadows" in the same spot that I experience attacks. Guess I'm still getting fully acquainted with the beast.

Hey WilCoo,

When you see your doctor, ask for the lab test for 25(OH)D.  This is the serum level metabolite of vitamin D3 that's used to measure its status. 

The normal reference range for 25(OH)D is 30 to 100 ng/mL, (75 to 250 nmol/L.)

Most physicians will interpret 31 ng/mL as "normal."  That may be true for rickets, but a 25(OH)D serum concentration that low won't do diddly for cluster headache. 

The data we've collected from over 300 CH'ers here at CH.com and from over 100 on the the online survey of CH'ers using this regimen, indicate an 80% efficacy where these CH'ers experienced a significant reduction in the frequency, severity and duration of their CH. 

CH'ers in this group tested for 25(OH)D in a range of 60 to 110 ng/mL, with an average serum concentration of 81.7 ng/mL.  CH'ers who tested for 25(OH)D before they started this regimen averaged 28.7 ng/mL, (71.75 nmol/L).

Sooo... just tell your doctor you want a lab test for 25(OH)D and don't take "No" for an answer. Take along a printed copy of the following link and show it to your doc if you run into any push-back:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Take care and please let us know how your visit to the doc went.

V/R, Batch

The only question you asked to which I can speak directly is the sinus infection. Most of us ran the entire gamut of teeth-jaw-nose possibilities. Any infection or disorder there can certainly aggravate a CH, but I don't remember a single one of us reporting success in preventing them by addressing the ear-nose-throat thingie. Doesn't mean you shouldn't try but I wouldn't bet the farm on it. Blessings. lance

Had my visit with Dr. Robbins yesterday,

I would call it a success. They are testing my 25(OH)D3 levels along with my testosteron, thyroid, a mono test, seratonin levels, along with a few other things. Why? I have been stuck in a bout of shadows. Not enough to give me an attack (k5-k10) but enough day after day to drive me into the ground emotionally. There's just something with not feeling well for a whole month as I'm sure all of you can relate to that starts to get to you. I thought minor depression meant major sadness. But it was a very apathetic nothing ever excites me mood that got me.

They want me to talk to a therapist, here in Wheaton Il. On the plus side she has chronic headaches or migraines or something along those lines so I do not doubt her ability to relate. Although clusters are crazzyy compared to some other things, she is supposedly educated on clusters (knows what they are/their severity)   So I may start on that on Monday.

Finally, they gave me 20 mg Prednisone to take for 5 days if a cluster cycle does begin. I've read just a little about Prednisone. Another thing that is good to have but I'm hoping it will be a while before it is needed.

Asked about vitamin d. I don't really know Batch but I understand he's put a lot of work into VD3, wish he could have seen both the Nurse practitioner, and Dr Robbins reaction when I mentioned it and showed them the literature he provided. The nurse practitioner there swears by the stuff. She was partially certain my D3 was low, and that almost all clusterheads were low. She said she had everyone in her office tested and they were all all low. She was even close to 30 ng/ml and if they were low she was curious to see how much lower I was. She wanted my whole family on vitamin D. If you live in the Midwest United States, or Seattle, somewhere cloudy, anywhere your not getting sun and you have cluster headaches, your likely low. I'm not saying its a cure but a vitamin that makes you feel better looks a lot more promising than some of the harder medications in my opinion. My motto with this is anything safe that will help me, I will definitely take into strong consideration.

I was treated for "sinus" infections for years until I came across a doc that recognised the symptoms. 25 years later and I still haven't really found anything that works, although I'm lucky that my cycle is about 2 weeks every 2-3 years. They've even had me on Lithium at times  :D

Byron wrote on May 23^rd, 2013 at 9:55am:

They've even had me on Lithium at times  :D

Lithium can be a very effective preventive for some people!

For well over 20 years Lithium was my primary prevent. Originally at 900 mg a day it blocked about 80% of my attacks. As I got older I had to kick it up to 1200 mg a day and even then it only blocked 60-70%. Almost nothing in the way of side effects for me, was the primary reason I kept my career!

Batch's regimen (D-3) has eliminated that for me as I've been pain free for over 3 years. :)

Joe

My first attack or 2 came when I was around 19 or so years old. At the time, I didn't go to the doctor since I'm just one of those types that doesn't go to the doctor "unless your dying." Well, of course the beast came back a few years later when I was 21 or so. THAT time I decided it's visit the doctor time because these things were just NOT normal. Something HAD to be wrong.

At the time, I didn't have a "regular" doctor, so I just went to the local health center and saw whatever alternating doctor that they had there that particular day. She checked me out, and rather quickly "suggested" that it may be a "sinus infection." The funny thing is, she had to have been at least somewhat familiar with cluster headaches as she did mention that it "could be" cluster headaches. However, she still leaned towards the sinus infection diagnosis, probably because cluster headaches are generally perceived as quite rare. She then prescribed some antibiotics, and sent me on my way with little more than the statement that I should return if I had any more of these crazy headaches.

Needless to say, I was back in there in a couple of days. The good news was that I saw a completely different doctor that day, and he immediately recognized this as a cluster headache attack. While I was there, he had the nurse inject me with my first Imitrex experience (which worked like a charm for me), and prescribed me Verapamil as a preventative. So, in the sense of getting a diagnosis fairly early on, I got "lucky," I guess.

Question #1.  YES!  its due them not knowing what a CH really is.

Question #2.  Uhm....never.  For me, I feel that no one would understand what I talking about 99% of the time, so, I just tend to keep my conditions to myself.  This way, people wont look at my like Im "seeking attention" of "full of shit" or considered "mental" in some way.  It just seems easier for me to keep quiet.  I just dont see alot of Cluster Heads openly admiting to one that they know is uneducated about CH's to say much about it.  That, IMO is why I dont think Ill meet a CHer one the street.

Yeah, I'd say our odds of meeting a fellow clusterhead on the street outta nowhere are pretty slim. However, I have certainly met those that make the ominous claim that they've "had ONE of those before."  :-?

I think we all went through the gammit of eye, sinus and neck diagnosis. I actually had sinus surgery....the Ent was sure it would help, laughable now, not even ten days after that surgery the beast showed back up.  Hang in there and vent away!

Ok, I can't resist, I gotta be the exception. Several years after I was diagnosed with these monsters, my brother-in-law was too and he started out chronic, still is. His sister, my wife has suffered from bad migraines all her life so maybe there is some genetic link. I really need to get him on D3 cause it's helping me and I really feel for all you chronic guys, I don't know how you maintain your sanity.
                    Sean