Hi all.  I go by TeeJ.  I am 34 years old from the US, living in PA.  I work in I.T. - have a great job, great family and a generally happy life.  My baby daughter was born just about 5 weeks ago, our first.  Life is really good, truly blessed. 

Last weekend, I hurt my back in the yard - no biggie it happens.  I decide to go to bed early after some Advil and a lot of water- 10pm is pretty early for me, I'm a night owl.  Well I wake up at 1130pm that night feeling the pressure in left temple, behind my eye.  Not painful at first, just weird feeling.  I roll over and try another position... pressure builds.  A minute or two later, the pain starts, and its starts radiating through the left side of my head, from temple to jaw and back and forth.  I get out of bed and take some advil and drink some water.  Pain gets worse and worse. I had never experienced anything like before.  I thought I was having a stroke or aneurism.  I try to lie down and relax, taking deep breathes.  Nothing works.  Around 1am I am devastated.  I cry to my wife that I need to go to the hospital.  I drive myself - she is home with our baby daughter. At the hospital they give me O2 and some other drugs, nothing work.  They do a CT scan which shows nothing.  But the meds make me sleepy so I fall asleep around 0230 or so.  I wake up around 330am and the nurse ask me about my pain, which had been a 8-9 most of the night, i say its about a 5.  By 6am I am pain free.  They send me home and tell me to see my family Dr.

Sunday night rolls around - guess what happens right around 1130pm ?  Yup I wake up in agony.  This time I Google it - First result for left temple headache - Cluster Headaches.  I got it for sure - blood shot eye, feverish on left side of head.  This time it last until 3am.  Not much I can do , not running up another bill at the ER.  I just suffer for 4 hours. 

I get a reprieve Monday night.  No headache. 

Tuesday I go to work - back still causing me issues - I leave early to try to get better - get home around 10am - decide to lay on a heating pad and heal my back ...fall asleep...well wouldn't you know what happens at 1130am .  Just too weird the timing of these things.  Finally get an appointment to see my DR - he gives me meds...sumatriptan tablets 100mg. 

Well this brings me to tonight.  Around 1241am I wake up and know what is happening this time.  I get out of bed and find my pills which I keep by the bed.  Pop one so fast and drink a bunch of water.  And wait.  I get on my computer and start a log for these headaches.  Around 0123 the pain starts to fade.  What a relief.  But I know they will be back.  From everything I read, the possibility of them coming back is always there.

So I guess this is my sad story.  Most likely not new to anyone here, but its good to share and write it down.  Hopefully I will find comfort and support here.  I appreciate you reading and wish you all the best in your life.  I truly believe things happen for a reason, and I'm searching for the reason I am getting these headaches now, when I've never had them before.

Hi Teej,
Welcome. Sorry you had to find us,but just hang in there. Help
is on the way. Their will be lots of threads to help you, just
keep a eye on your post's.

Hoppy.

Welcome to the board Teej.  Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for over 35years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

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

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

So all that follows will be worthless I hope……….but still…

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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

This link will show you how to get set up with welding oxygen:

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

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers. In the early stages of CH in my 20's, the pills may have helped as my attacks built more slowly then. Now I have only a matter of minutes before it hits full force. That's why the 02 leans against my bed at night when I'm in cycle!!!


For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Thanks all.  I really appreciate the advice and support.

I have now had 2 more episodes / attacks.  One at work today which was the first that I've had start while awake.  And then another woke me up about 15 minutes ago, so now I'm just waiting for my Sumatriptan tablet to kick in.  Generally I have 30-40 minute wait on that, so here goes my tango with the 'beast'

I had one newbie question - has any ever found a pulled back or neck muscle to be a trigger for CH?  I am sure the nuro specialist will be able to answer that, but thought I'd ask that is something that happened right before this started for me.

I will def try to get in to a specialist as suggested and look into the vitamin regimen and everything else suggested.  I do a lot of research for work with I.T. related issues, so its part of my daily life - so researching CHs came naturally.  What did we do before Google? I've also started a log with what I ate and what I did before the attack to track this stuff down.  I'm also putting my episodes / attack times in my Google Calendar.

Thanks again and god bless you all !

G'day Teej,
Their are are lots of triggers to onset CH's. In the main,         
processed foods and alcohol.I've also read, physical
exersize can also trigger a CH in some folk. Neck injury
is a complicated one as it can mimic CH's and fooled
many neuro's in the past. Also CH's seem to pop up
Spring and Fall in most cluster'es myself included.
my last episode was Spring 2012 but since being
on the D3 regime i hav'nt had an episode.
Hoppy.

TeeJ2379 wrote on Jun 1^st, 2013 at 3:39am:

I'm just waiting for my Sumatriptan tablet to kick in.  Generally I have 30-40 minute wait on that, so here goes my tango with the 'beast'

The long wait with the tablets is why we suggest people go for the injections or nasal sprays as they kick in within a few minutes which will save a whole lot of pain.


TeeJ2379 wrote on Jun 1^st, 2013 at 3:39am:

I had one newbie question - has any ever found a pulled back or neck muscle to be a trigger for CH?

Not heard of it being a trigger but lots of us have pulled muscles and done other damage to ourselves quite by accident during CHs, never noticing until afterwards as the pain from the injury just doesn't get noticed whilst the CH is there.

Got another CH just a few minutes ago.  I've taken sumatritans 2 since 541pm yesterday (Had one at 3am this morning too) so I am scared to take anything now...guess I just have to deal with it.  Is it typical for headaches to happen more frequently during clusters?  Generally they were 24-48 hours apart and now they seem be getting more frequent...

Feel for you TeeJ.  I'm in the same boat as you as this is all new to me and I have no understanding of it.  I have a constant headache though.  I live in Canada and I can go to the ER but it doesn't mean here they are knowledgeable, get you in quickly and do what is right for the cluster headache especially because I am a female.  I have now taken 2 percocets to abort my headache and all I feel is a body numbness but no relief from the headache - this sucks!  Good to hear the Sumatriptans are working for you, they do nothing for me - I need to try the nasal or injectable but I don't have another appointment until the 12th.  The misery until then...

Good luck to you and hope you find some relief soon.  Did you start the D3 regiment yet?  I started yesterday as well as the Topamax the day before, hoping something will kick in.  But probably not for 2 or so weeks. :P

Lizardqueen wrote. I'm in the same boat as you, your not
alone, we are all in the same boat as you, but i'ts more
like an ocean liner so you have lots of help to fight the
beast.                                                                              

Hoppy.

For the back issues my 2 L5 surgeries suggest float in water. Tread and swim if possible. Get gravity off the body. 1/2 hr. 15 float/15 tread or walk.
As for CH, had to say but ruptured L5 is almost as pleasant. Read, read and read some more. I feel truly hardly any docs specialize in it, many never have heard, some are curious but most all want to pump ya up with meds. Now I don't go anywhere hardly w/o a Sumatriptan pill within reach. Especially at work. Just in case. I cannot ask for a few minute break.
Regardless, meds make life worse IMO. Longer cycles and a zombie/hermit lifestyle.
Today I awoke and grabbed the red bull above I didn't need last night, 2 LG coffees and I just chugged another at bedtime this evening to knock the bastard back out of my jaw. Now I can accept some noise back into my head.
That is IMO the CH life.
I keep saying we are the toughest alive no matter how small a percentage of the population we occupy. 

This past weekend was Hell.  I used 8 of my nine sumatriptan doses since last friday at 530.  I took today off work to recover and get some Dr appointments in and scheduled. 

Family Doc gave me more sumatriptan doses, but at 50mg so I can see if I need a full dose or not.  Didn't want to prescript injections.He didn't want to give me Verapamil for some reason, put me a Topamax instead 25mg.  He did refer me to a neurologist so that is hopeful. 

I went to Sam's Club today and got my supplements for the anti inflammatory regiment.  Dr also referred me to get my d3 levels, so I had the blood draw today as well.  Took my first dose today with lunch.  Also picked up some Melatonin as I had read it helps CH'ers get through the night sometimes.

My last attack was at 1030 last night and my last Sumatriptan knocked that down.  Overall, I feel positive today.  The real test will be tomorrow back to work and hope for a quiet night.

I'm waiting for the Neurologist consult to ask for oxygen and the imitrex injections since my Dr doesn't seem to have the knowledge he needs to treat me completely.  Felt I was wasting my breath talking about the vitamin D bit with him.  Wife said no to getting a welders tank for O2 - she thinks its dangerous.  So I'm hoping the Dr will prescribe O2 and I can get a regular medical type setup.  If things get really bad I'll get the welders tank and deal with the wife later :)

Any other suggestions?

Hello TeeJ,  The welding tank is no more dangerous than a medical tank and hospitals use ox all the time. I went that route 6 or 7 cycles ago and now I have both.  Ox has saved me through every cycle since I started on it, when all else fails it's your best friend. I started the D3/fish oil on Sat morn so that's 3 days and today was awesome, just a couple of shadows, I'm not not celebrating yet but I am hopeful especially after how bad last week was. It can't hurt to try it. I did try the red bull yesterday, didn't do a thing but the ox did.
Good Luck,  Sean      Remember-- oxygen is not flammable but it seriously accelerates any flame.

Hi, TeeJ,

Good luck with everything. You can see where these things can get out of hand -- and quickly. I hope the vitamin regimen works for you. The Verapamil works pretty well for me. Good luck with the docs and hang in there. You have lots of friends here.

rep

I've heard people refer to shadows and rebound headaches.  Being new to this I am not sure what these feel like. Anyone willing to take a shot at describing a shadow or a rebound headache? 

I can say after this weekend my head feels sore and tender.  I get twinges of pain but nothing consistent.  I can definitely tell I took a beating this weekend.

TeeJ,  I'm sure it's different for everybody but for me it's those sharp little jabs or twinges on the side of my head that last from a few seconds to 10 or 15 min. then go away or not. I get another kind also, a dull "black" steady pain on the top front side of my head that can go on for hours. The key is to learn your own patterns. For me  it's when I start getting a pin prickly feeling on the top side of my head-- I'd better be close to my ox tank. It's almost the same feeling I get after a cluster has drained out.     Rebounds for me are the real monsters I get after successfully aborting hits all night through the use of drugs.  Preventing and aborting are two different things. I play with fire I guess by aborting and using ox if I get a rebound and it's worked for me through many cycles but I don't think most people here would recommend it. This cycle is bringing that message home but I may get away with it as the D3 / fish oil seems to be helping a lot   
       Sean

Hi Teej,
A shadow headache is a sign a CH is on the way.

A rebound headache is caused by taking Triptans.
( Imitrex - Imigran ect. )

Hoppy.

Thanks all!  Heres to hoping for a quiet night !

TeeJ2379 wrote on Jun 3^rd, 2013 at 4:30pm:

Wife said no to getting a welders tank for O2 - she thinks its dangerous.

As dangerous as not having an effective way to abort CHs?

Welders oxygen is no more dangerous than medical oxygen. You'll find oxygen cylinders are perfectly safe as long as you follow a few simple safety steps, like no smoking / naked flames when it is used, etc.

Sean McE wrote on Jun 3^rd, 2013 at 11:40pm:

I play with fire I guess by aborting and using ox if I get a rebound and it's worked for me through many cycles but I don't think most people here would recommend it.

Quite the opposite. We recommend you use O2 to abort any attack, rebound or shadow. The only way to stop a true rebound headache is to stop taking the offending medicine. Think here of what happens when you use nasal spray. The more you use it, the more you need it to open nasal passages. It creates its own cycles, which get shorter and shorter, until you cease its use entirely. Shadows are precursors and/or leftovers from a full-on hit. Use O2, by all means. blessings. lance

Just an update:  Last week, specifically Wednesday night through Friday evening was horrible.  I had 5-6 HA and all of them seem to be 7-10k - sumatriptan and energy drinks warded off some of them, but my head took a beating.  I made another trip to the Dr. Friday afternoon - my third trip in three weeks - more then I'd been in two - three years.  He finally wrote a script for O2, imitrex injections and put me on prednisone taper - 80mg tapering over 12 days... He upped me to 50mg topamax - still no verapmil :(   

Started the prednisone on Friday at 6pm right after I ate and I had a HA around 730pm.  Sumaptriptan and a monster drink knocked it out by 8pm - have my injections on order same with O2.  Have not had a HA since.  First time I've been PF in three weeks for a 48 hour period - really amazing.  I still have some shadows and feel the beast raging inside, but its more pressure and a shock here and there -nothing too serious.  Seems I'm heading in the right direction.  Still on the d3 - not really sure I'm seeing improvement yet, and have not gotten my initial results from my labs yet.  Will post back with any news. 

Thanks for listening guys, and all the education and information.

Finally got into see my Neurologist!  I had to keep calling and seeing if there were cancellations and today I got lucky.  She got me the proper O2 script and put me on Verapamil finally!  I feel so much better and feel that I am on the right track to managing my CHs now.  I am tapering down my topamax and starting my Verapamil tomorrow morning.  Careful to space it 8-12 hours away from my D3 regiment as noted on the post I've read on this board.  Thanks all!

hi teej,  real glad you got verapamil. as you know im only new here, but, here's my experience so far. I was prescribed verapamil and told to stay on it, I couldn't or didn't and when I got my first real cycle at xmas just gone, wow, 4 weeks of 4 a day, more excruciating than my previous episodes. since January, I have religiously taken my verapamil, only 240, once a day and my new cycle which started a couple of weeks ago has been notably less intense than not being on them.  the prednisone taper completely wipes out my attacks, but as soon as I finish the taper back they come within 24 hours of finishing. I wanted to try to take a second dose of verapamil as recommended from nz mike, but like you I take the d3 regime at nite, verapamil in the mornings.  ive been on for a week now, still getting a hit at least per day, so I took a 50,000 extra dose of d3 last nite which was day 8. generally a 50mg imigran pill works for me if I take it at the first sign and the pain is only a 5-6. I think its worth persisting with the d3 regime to give it time to build up, then get re tested to see if the levels have increased. verapamil takes a couple of weeks to get into your system, so hopefully you can hang in there like me with especially the d3 regime and now with your preventative, verapamil and cross fingers, one or the other will work.
crossing fingers for you teej, hang in there......
colin

I got a good one last night and I'm still tapering off my predisone - was kinda disappointed.  Yeah I am hopeful.  I think this O2 is going to be helpful as well - should have a tank by the end of the week once my insurance figures out what they are doing.

Did your doc tell you to go back up one step on the prednisone for a week and then start to taper off again? That's what I've been told when I get a screamer while tapering off.

rep

I have not gone back to the Docs yet - I actually think things are improving - managed to get through last night, this morning and lunch without a major episode - have not had to use my imitrex yet today - maybe the d3 and verapmil are starting to take affect? Time will tell - o2 comes next week unfortunately - can't get any more time off work to go pick it up.

Think you are going to be good TeeJ.  I have been on 360 mg/day Verap since around this time last year.  Everytime I tried to lower the dosage I got those damn shadows - and occasionally just a normal headache (maybe a migrane).

Anyway - last week got my first real hit in along time.  Didn't last long, and wasn't real bad, but got my attention.  Then this week I started getting many shadows and then got a hit on Wednesday that made me use up one of my Imetrix injections (which I ration because of the cost!).  Anyway - Wednesday night started my Pred taper that I had arranged, up my Verap dosage - and other than the normal side effects of the Pred, been great.  Working much faster than last time because I think I caught it much earlier.  Last year I was in the middle of a bad cycle when I started so it took a few days longer to take effect.  Sounds like you are in the middle too - but it sounds like it is working now.

Also - unlike most of the poor brothers and sisters on this board, I never stop having my beer - after five years of experimenting I cannot find any real trigger to my head aches - so why give up one of life's finer pleasures? 

Good luck

TJMBeav wrote on Jun 15^th, 2013 at 12:51pm:

Also - unlike most of the poor brothers and sisters on this board, I never stop having my beer - after five years of experimenting I cannot find any real trigger to my head aches - so why give up one of life's finer pleasures?

Some of us are lucky enough to not have alcohol be a trigger for a CH, so we are free to enjoy it. After all, life with CH is about enjoying life between the hits.

And AussieBrian even is kind enough to offer a beer disposal service.

Just got through Autumn with no CH's. Now i can also enjoy one of life's finer pleasures. Cheers. [smiley=beer.gif]

No Beer for me since this started - not going to risk it - This is my first experience with the beast so better safe then sorry - if the D3 works as it suppose to I may not have to worry ever again. I am going to give the verapamil and the new MG supplements (Citrate instead of Oxide this time!) to kick in and see where I am.  Maybe another 2 weeks hopefully?  Would be one month on the d3 - plus I should have my initial lab results next week - so I will have a starting point ... Still no real bad hits in about 4 days, but really bad shadows and lots of head pressure....I take that as a win for now...

Hi TeeJ and Welcome to Clusterville

  You're very fortunate to have found this family early-on in your bout with the beast.

  I'm a head trauma CHer . . .  hit my noggin (almost knocked out) 1/01 . . . attacks started.  By the time my wife found this site for me (2/02), was having 6-8 attacks daily, sometimes 3-5 at night . . . . most 20-45 min, Kip 5-9, and the occasional 1-2 hour + horror.   Copied info off this board, took to doc and got started having some control of the beast. 

  I  used Verapamil to good effect for three years.  Didn't stop the beast, but reduced the frequency and intensity to a level I could usually kill easily with the 02 (daytime hits).  Night hits are already ramping fast by the time he wakes you, so you have  to use more 02 to stop the ramp and finish him off.   Proper flow-rate and mask is essential for best results.  If the regulator you get is an 8 lpm, go to ebay and get a 15 (works fine for me) or 25 lpm regulator.  You should get (if your doc knows his business) a non-rebreather mask (the one with the bag . . . will be a 1 litre bag) . . . . then order an O2ptimask with the big green 3 litre bag . . . .MUCH more effective . . . and always remember to get on the 02 at the first sign of attack.  Much better to kill him at a Kip 2-4 in five minutes than huffing and dancing for 20 minutes.  The "E" tanks you will get from  your med supply will give you 45 min of 02 at 15 lpm.   That's 6-8 aborts for small hits or two big hits.  I kept 20 tanks ($10 each exchange . . . no deposit . . . but prices vary wildly depending on where you are)

  Re the Verapamil.  Had my first PF day in over a year when I hit 240 mg (had 3 attacks that night, but it was a WONDERFUL day).   Got as high as 480mg (many take considerably more and often with other meds like lithium), then settled on 360mg regular maintenance dose.   Don't be surprised if you have some constipation as dose increases......many do (I did), but that's easily controlled with diet change or stool softeners.

  I stopped the Verap in 04, post surgery and prior to chemo . . . attacks had reduced in frequency/intensity most likely because of the large ammounts of water I was/am required to consume to prevent UTI's (had bladder/prostate removed) . . . .. see "water X 3" (button on left above yellow "oxygen info".   Water therapy does work for many . . . it IS NOT easy to do.

  BEST NEWS . . . . After being chronic for over ten years, I've now gone 18 months without an attack using the D3 regimen.   It's my hope that it will work for you also and you won't have to live with the very real FEAR of the beast.

  Be Safe,   PFDANs

    Richard

Say in two weeks I am pretty much PF - do I start reducing my verapamil or should I wait a bit longer? (currently only taking 240mg - been at that dose for about 4 days - started at 80mg and tapered up over the past 8 days.)

Like I said no real big hits, but massive shadows - I am off the predisone finally so it should be out of my system pretty soon I would hope (heard that can hamper d3 absorption.)  I got the right MG tablets now so I am on the regiment full bore with k2/zinc/d3/fish oil/and a multi vitimin supplements -  should be exactly what Batch suggested now. 

I have not had a really bad hit since last week - Thursday during the day, but I get bad shadows that I am using energy drinks to knock back about 3 times a day.  Using my melatonin at night so getting some good rest.

Honestly, I could live with the shadows vs the hits I was taking.

Any other suggestions?

TeeJ

  My opinion is that you're doing great!  Am I correct that you haven't gotten 02 yet?

  General opinion is that the MINIMUM effective dose for Verap is 240 mg . . .  then increase to manageable frequency/intensity (with 02 to abort) . . .  so if your hits/shadows are currently low level and not ramping to "dance" stage, the D3 regimen might already be starting to work for you.

  Try a gel pack or bag of frozen peas . . . I always kept two gel packs in the freezer.  The first time I tried ice I made the mistake of keeping it on my eye or forehead for too long which (for me) brought on an additional and unwanted shot of pain.  But if I kept moving it about the face/eye/forehead/neck, (all the while huffing 02 and after slamming a Rock Star (I like the orange), it seemed to shorten the abort time.  I always carry a 1/2 gal insulated mug of iced water when I'm away from the house and always have a bandana with me . . .  so if the 02 didn't kill him in a few minutes, could dump some ice in the bandana.  Got lots of strange looks driving down the road huffing on the 02 and swabbing my face/eye with a bright red bandana.

  My triggers were alcohol, exhaust fumes, petroleum products (like carb or brake parts cleamer) . . . . and the triggered attacks always seemed to ramp faster and higher and took longer to abort.

  I've been away from the board for a while and haven't taken Verapamil in years so I can't really comment on when it would be comfortable for you to stop same and rely solely on the D3 regimen.

  Keep reading, keep asking

    Be Safe,  PFDANs


      Richard

All - I am either out of cycle now or the d3 is working.  I'm a week and a half off my Verapamil.  Wish me luck. Sticking to the D3 regiment and hoping my next cycle never comes!  Keep strong and keep fighting. PF nights and days folks!

Gotta love the sound of that! [smiley=thumb.gif]

Joe

Sorry to bump an old post, but thought it would be fitting as I'm coming up on my one year of being a cluster-head. 

I have to say that I am very fortunate in so many ways.  First that I found this site so early on, and got some good advice.  Second that my Wife is an awesome person and has been very supportive of me and my condition.  Third, that in the last few months my CH has almost been a non issue.  Fourth - I found a Neuro who is open and supportive of me trying whatever I want and not judging me.

I almost went through a three - five month period of not even thinking about the beast.  Not even a shadow.  I attribute this to the Vitamin D3 regiment that I take religiously with dinner.  I have been doing 20k IU vitamin D for months.

I had a follow up with my Neuro just recently - she has been on board with this regiment and is very interested in seeing how I go - and got me in for a blood test.  I would say 6 months of being on 20k IU Vit D has keep in my levels in 85-100 ng/ml range nicely.  10-15k was just not doing it.  My last blood test was 92 ng/ml (was down to 70 before only 15k IU a day), so I'm feeling pretty good.  I still keep my Immitrex nearby, still have Verapmil in my cabinet ready to go, still keep a monster or two in the fridge just in case.  I never leave home without meds and a energy drink.  But I can say that I really have not needed anything for a true cluster in months.  Shadows pop up if I don't get enough sleep or if I slip up and take my regiment too far away from my dinner meal.  But its rare.

So hopefully this uptrend and hopeful outlook last me through my anniversary date.  PF nights and days folks - I'll see ya around!