Has anyone started Verapamil without the pred taper?   Started yesterday morning and am now breathing off my fourth HA in since 11 pm last night!   

Getting slammed about every 2 hours.  This has never happened before.

Thoughts

E

Hi Eroc,
The prednisione is a 7-10 day taper dose until the Verapamil
Kicks in. What dose of Verapamil are you on a day?

Hoppy.

I have the pred taper scrip filled.  I am just not a fan of the steroids.   Especially such a high dose.   I think he officially started me at 120 mg taper.   I also have lithium at the ready as well.   :'(

I started the verapamil at 480 mg or 120 mg 4 times a day.   

I am typically a twice of day kinda guy but this is ridiculous .   Twice a day is manageable every two hours is a recipe for disaster. 

Thanks, for your ideas. 

I've been having a crazy obnoxious cycle myself, a "never seen" before kind, scares the hell out of me.  I think it has to be the climate shifting so dramataclly this year.  When I started using verap years ago I started in the middle of a cycle, no taper, it did not make my cycle any worse and after 2-3 weeks I entered a period of remission unlike any I had ever known since this curse started. 

As far as the pred, I'm already on my second taper of this season.  It's been great, like a vacation in a bottle, it would be even better if I didn't have prednisone in me but to me it's better than hits every 2 hours which is pretty much where I was at too prior to the taper. 

Good luck to you, drink lots of energy drink!

This is something like my 6th cycle with 2 plus years in between and never has it been this invasive.   Usually the trex which i dose down with syringes to about 2 to 3 mg's solves the problem and let's me sleep for a few hours.   Last week I also had two occipital nerve blocks done.  The first one gave me about 34 pain free hours and the second really didnt work. That's why I decided to start the verapamil .   

Now the beast won't let me sleep at all.  Now I suppose I will have to start the pred and see how that works.  Just sooooo tired and keep getting really small hits that kill in a few small hits of o2 . 

What dose of Pred is typical to provide relief?  My Neuro prescribed me a 120 mg taper.  Then on top of that lithium which he states counteracts the psychotics effects of the pred.  Then the verapamil on top of that. 

Chemical cocktail.  The D3 isn't working for me and I have been working with Batch to find out why.   

Vitamin A retinol is very hard to find. 

We also have had a very strange winter up here in Minnesota . 

I get hit within 45 mins of laying down. 

WTF

Eroc wrote on Mar 16^th, 2014 at 8:26am:

What dose of Pred is typical to provide relief?

I ususally get this 60mg/5 days, 50mg/3days, 40mg/3days, 30mg/3 days, 20mg/3 days, 10mg/3 days.  It has completely blocked this cycle so far...NO headaches with the prednisone.

Pred makes me aggressive, hard to get sleep, and all puffy faced but I would gladly go through it as opposed to the cycle it broke.  Just wish it would last forever.   :-[

Also, for me, the pred usually starts to take effect within 24hrs or so.

My first reaction was: sharp doc!

Dosing on the Pred and Verap are standard. The relativelly fast tapering down on the Pred. avoids side effects for most people but, report side effects, of course.
The side effects, which can be serious, affects people who are using it for months.

Pred knocks out the cycle rapidly. Verap. taskes several days to start working, hence, this standard initial treatment  package.

Hi Eroc,
Have you tried Imitrex auto injectors? They have a good
Record in aborting an attack.

Hoppy.

Hoppy, 

Check out my profile pic up close.  That is from the previous bout.  The used Trex count is much lower this time but adding up. 

I inject the auto injectors into a vial and then dose down depending on the HA to as little as two MG of Trex.  We had a little arts and crafts fun at the Neuro office three years ago during my last bout which I completely went through on Trex as I hadn't figured out the O2 as of yet.  Now with an opti mask and welding regulator I am able to get O2 to work.  Most of the time!

I did decide this morning to throw the book at it and too the pred, lithium, and day two of the verapamil .  Started the taper at 110 mg for three days then begin the taper. 

After a busy day working with heavy shadows and a light but constant pressure on my cluster side I am sitting down and mentally preparing for another night of hell. 

I will keep you all posted through the night and can't begin to express how much all of your support means when few really understand how much this disease hurts and how hard it is to cope with. 

I'm praying for pain freed days.   

Thanks again,

Eric

Update:

As people have stated,  immediatly after starting the 110 mg pred taper, lithium, and day three of the verapamil I am pain free. 

I suppose this will last for at least the duration of the pred taper and hopefully the 480 mg a day split into 4 doses will grab hold and keep the beast away sending it into is hibernation cycle. 

My pred taper however drops off quicker than I see others describe so that should be interesting to see. 

Still have some pretty strong shadows and mild pressure but nothing compared to the $#!t storm I had Saturday night. 

Here's to a good nights rest and praying for an end to this cycle. 

Thanks all,

Eric

Update:

It's been a pretty strange week.  Shortly after starting the pred taper I came down with a damn cold. 

I have however been full on HA free with the exception of this afternoon.  I got off work a little early and thought a nice nap was in order.  Well after about a 45 min snooze I woke up with a kip 2 ish that wouldn't really develop and wouldn't go away either.  So I gave it about 2 mg of Trex SC and was good after that. 

I am at the 80 mg day of the pred taper and today's experience tells me the beast is waiting. 

I really am struggling with all of this, this time around.   I can't remember it being this rough and constant.  Really having trouble keeping my head up. 

I guess one day at a time!  One hour at a time! 

I will try to get some sleep! 

Thanks for everyone's support!

E

Hi Eroc,
Sorry to read you are suffering and in so much pain!  We understand what you are going through and are here to offer our support to you.

In my experience, 480mg Verap seems high for an immediate start dosage, which could've been the reason for your side effects experienced the beginning of this thread. 

Or maybe it was the nerve blocks giving a side effect. 

Pred sometimes has side effects too when starting a taper, which commonly go decrease/go away over the taper period.

You have mentioned at least these three variables that could be producing these unwanted side effects.  Bottom line is the human body is just not designed to handle such a shock of no meds/treatment to all of a sudden ingesting high dosages of meds/treatment.  I really believe if you researched with your doctor you would find everything you experienced is hopefully normal. ;) 

Most preventative meds take a bit of a waiting period to kick in to the bloodstream and titrate up/down accordingly after recommended wait times/blood levels.  It is common for Verap to take 2 weeks to show effects of less frequency, less intensity; thus the Pred used as a "transitional" med to taper over those "2 weeks."

What kind of Verap are you taking,,,immediate release or extended release or combo of both?

Hope you're felling better soon ;)

-Gregg in Las Vegas

Greg,

Had a much better day.  With the pred keeping all hits at bay. 

I think it was the nap that threw things into the lurch.  I am on the slow release verapamil 120 mg 4 times a day. 

I am at 70 mg of pred tomorrow dropping by 10 each day.   My apprehension is that I have to travel to Las Vegas on the 1st for business for five days, and am thinking of extending the taper out for an extra week.  I have extra from a previous cycle I didn't use.  I really don't want to chance having a bunch of CH's whilst traveling. 

I also have been talking with Batch pretty regularly,  regarding the D3 and what I have been taking.  I apparently have a rather finicky body and if it is to work it will be due to a finite detail.  Not just the d3 itself.  Added in actual B12 and doubled the vit A retinol.  Hopefully something will work in that regard.  My levels when tested 1 week prior to this bout were at 78.1 ng ml .   I am going to try and get another test done prior to my trip to see where I am at now.  I have been on a maintenance dose of 20000 iu daily for the last three years.  I was worried I was going to be very high however that was no the case. 

Any thoughts as to what level to stop tapering for an extra week would be? 

Either way I really appreciate the support one can get on this forum.  So few including the wife really understand the pain.  As this bout goes on the frustration level claims. 

Either way have a good night. 

Eric

Eroc wrote on Mar 21^st, 2014 at 11:42pm:

One hour at a time!

God I know what you mean, I have been reduced to this this cycle as well.



Eroc wrote on Mar 21^st, 2014 at 11:42pm:

I think it was the nap that threw things into the lurch.

I avoid naps like I avoid alcohol when in cycle although pred normally makes them safe for me.  What a horrible condition you can't drink beer or take naps, leave it to me to get that one.  ;D

Hi Eroc,
You should probably ask your prescribing doctor his/her thoughts of what dosage to stay at and how to best taper over an extended time period. 

I've done extended Pred tapers and am not a fan of side effects, however when in cycle, I am willing to take anything to stay painfree; so I understand your situation completely. 

Make sure to PM me a few days before you arrive in Las Vegas and we'll make plans to meet up if you're interested.

-Gregg in Las Vegas

The process of choice is to start pred and ramp up Verapamil. Verapamil needs to be tapered up and down. Starting with 480mg is not suggested. If you need to expedite I would start with 240mg for 3 days, then 360mg for 3 days and up to 480mg.

Verapamil takes 7-10 to reach therapeutic level (most here are good with 480mg, some need more).

Pred is toxic but if you want to stay pain free while ramping up Verapamil there is little choice. Pred also needs to be tapered off.

Before you don't know whether Verapamil is working or not I would keep Lithium in the box. Has worked for me as well as Verapamil but needs another set of monitoring, especially in the beginning.

Jason1212

How much time did you have between pred tapers? And how long after to ran out of pred did it take for the CH's to return?  I have three days left and am getting nervous.

Thanks,

Eric

Hi Eroc
I'm sorry I don't have any advice but my experience with Pred was definitely nervousness coming off the taper and in fact I extended it by a few days because of an important celebration. I gather this is not recommended but generally my side effects were only weight gain and way too much energy !.
My nervousness was justified as I didn't time it right with my verapamil come up and had a rough few days in-between but have been a "shadowy" PF since. Will not be sure of the cause of the shadows until I taper the verapamil.

Update for those who are following.   My Neuro extended my pred taper by about a week at 40 mg a day and I have also upped my verapamil to 600 mg a day.  I am also on 1200 mg day of lithium as well. I have not had a CH in two days and the one hit I did get was like a Kip three. 

I have however been getting a what I would call a tension headache in the back of my head the last two afternoons.  Very similar to say when you had too much to drink the night before headache. 

I sleep it off over night and wake up feeling great.  I have also been taking the D3 regimen at night after my typically late supper so I'm not sure if it has to do with that or the 3 monster energy drinks I have been consuming during the day. 

I am still waiting for my latest D3 results, but I expect them to be high.   

If anyone has a similar experience I would love to know how to kill the minor headache.  I haven't taken any ibuprofen or other general drug for fear of an interaction or something.   

Any day without a CH is a good day in my book so I am pretty happy.  The key seems to be staying busy. 

Again any thoughts are appreciated.   

Have a great day all, 

Eric

Eroc,

Is the headache on both side of your head or just on the side where you get the CH? If it's just on the CH side..I get those as a shadow of a hit..right in the hollow towards the bottom of the head. My neuro said that's where the trigeminal nerve root is and where CH begins.

If not there then I'm sure others will chime in..maybe rebound headaches from the drinks?

Hoping for totally Pain Free days ahead!
Judy

The HA is on both sides and I would describe the location as back and low in my head. 

I would not describe it as a shadow as I am very familiar with those and they typically hit up front closer to my eye. 

I also wonder if it could be dehydration,  with all of the meds my fluid output has been elevated.  So much that on Friday I went in for more blood work to try and determine what drug could be causing the problem and to try and see if it's related to blood sugar problems.   

I probably won't get those results back until Monday or Tuesday. 

E

Eroc,

Glad you are being proactive to find the source of your headaches. It's bad enough to have CH without another headache cropping up! When my cycle is done...damn if I want any other head pain! Hopefully your blood work and Dr can find the source and you can be pain free!

Judy

Hi Eroc
The "rough few days" I referred to was 3-4 days of very heavy continuous tension headaches mixed with the occasional kip 3. I wasn't having any energy drinks and painkillers (ie codeine) had little effect. They were like a skull cap headache that was on top of the head extending down to the neck which caused continuous sore neck. Ice packs gave the only relief. They went away after about 4 days which I put down to the verapamil kicking in.
Hope this helps

Eroc wrote on Mar 27^th, 2014 at 7:08am:

How much time did you have between pred tapers?

Almost 2 months.


Eroc wrote on Mar 27^th, 2014 at 7:08am:

how long after to ran out of pred did it take for the CH's to return?

If the cycle isn't broken by the time the pred wears off, usually by the time I get to 10mg of pred per day I'm already starting to feel unstable and shadowy.  Once the pred completely stops within I'd say 3 days or so the beast will come.

In the interest of full disclosure.  Two monster's a day is not uncommon for me even out of cycle.  Its my coffee.  We drink the low carb blue ones.  However recently I have taken a liking to the Rehab ice tea and lemonade variants. 

Either way copious amounts of caffeine are normal for me.

Thanks

Eric

This whole thread sounds too familiar, because I've lived it  :(   

You're getting some great advice already. I just wanted to add: while most of us will do anything to stop the attacks, especially if getting hit every couple of hours, steroids can help tremendously. Just never forget that the steroids can also be a double edged sword. Side effects can range from mild - severe (or even fatal). ALWAYS talk to your doctor about dosages, tapers, etc. and never stop abruptly. If you think your doctor has made a mistake, start asking questions.

Good Luck

I4B

Eroc wrote on Mar 30^th, 2014 at 7:41am:

I also wonder if it could be dehydration,  with all of the meds my fluid output has been elevated.

Lithium is a salt, so it might be increasing the rate of "fluid output". You could try drinking more water, especially if the fluid output is dark in colour.

I'm going to back off on tha caffeine today and up my water intake and see what happens. 

And I agree with the double edged sword comment as it relates to the pred.  I am hanging onto 40 mg a day for a few more days then taper out.  Hopefully this cycle will be done or the verap has a hold by then. 

I have a business trip to make next week and really need to be on my game. 

Regardless the extra headache is nothing more than an annoyance when you compare it to a CH. 

Great days.

Eric

I am going to guess that the minor tension type head aches I had Friday and Saturday were due to excessive caffine or some substance contained in the Monster Energy drinks.  I dropped back to one a day in the morning (my coffee) and I was good. 

I do have to taper down the Pred over the next 5 or so days so we will then see if either the Verap has its hold or if the beast is still hanging around. 

Thanks all for your support and opinions.  It helps to talk with people that understand.

E

Well,  I traveled to Vegas and the time change and long day has caused a CH.  Just had to hit the Trex.  Despite the 40 mg of pred, 600 mg of verapamil and the d3 plus B100. 

I feel pretty doomed this time around and now I'm 2500 miles from home. 

Shit!

E

Eroc wrote on Apr 2^nd, 2014 at 1:19am:

Well,  I traveled to Vegas and the time change and long day has caused a CH.  Just had to hit the Trex.  Despite the 40 mg of pred, 600 mg of verapamil and the d3 plus B100.  I feel pretty doomed this time around and now I'm 2500 miles from home.  Shit! E

Eric,
As offered in an email to you, I can meet with you today after 5pm and have o2 and Trex if needed.  Let me know.

-Gregg in Las Vegas

Update:

Well,  it seems that 40 mg of pred is where it starts to lose its effectiveness for me. 

I also got scolded by my Neuro for upping my dose of verapamil to 600 mg a day on my own. 

Just got hit this morning and killed it with Trex before it got too bad.   

I have an appointment with the Neuro on Tuesday but I am out of things to suggest.  I have been working with Batch and am on the D3 regimen to a T as far as I can tell. 

I know I can't live on Trex and high doses of pred, and am going on month two of this round.  It is really starting to effect my work and home life. 

I like all of you am getting so frustrated with this condition and the fact that I don't seem to be responding to many of the typical treatments.   

Sheesh.  One day at a time! 

E