Hello Everyone!
A question on fatigue and excessive sleepiness...  i am currently using Verapamil 240 as a prevent and am finding i am so lethargic and sleepy that i am having trouble functioning. Does anyone else have this issue while on Verapamil? I’ve increased my B12 and take a multi.  Thanks for any help you can offer.  lib

The only thing I've found that effectively combats the fatigue associated with verapamil is caffeine. And for me, that means large amounts of it. Like 4-6 cups of coffee a day.

It's one of the reasons I don't take it anymore.

Thanks for the reply Brew! I say as I drink my very stong coffee at this moment. Fell in the cahir after work today and didn't get back up until a little while ago. almost fell asleep a couple of times today and yesterday. Didn't seem to have this problem when I first started taking it... am scared to death to change the dose though as I have been without a hit for more than 3 weeks...could be just the end of a cycle but since this is so new to me I'm not sure about anything... maybe I'll try reducing the dose slowly and see what happens; I've successful weaned off all other drugs so maybe I can get off this one too. Thanks for the help! lib

It does the same thing to me and I take small doses compared to everyone else.  A month after my last headache, I start tapering down, then continue on 10mg in AM and 10mg in PM year round.  This is the first time I have stayed on a low dose yearly (as my doctor suggested, but I didn't like).  It has been a year since my last headaches, which is too early to tell if the small dose is doing anything for me.  There have been a few times recently that I got the pressure build up and I just added an extra 10mg that for a couple of days and it hasn't progressed.  But, like I said...it is too early to tell.  When I started tapering...I did it VERY slowly and sometimes had to back up a little and re-start.  Hope this helps.  I hate the Verapamil, too, but, like you, I am too afraid to stop it.

Joni

Hey Lib:

I'm on 240 morning and 360 at night and I fall out all the
time too! But, just cat naps don't want to meet the beast!
On 150mg of Topomax too.  I'm a walking zombie.    :o
Still have a hit or two but a far cry from the 6 - 7 I was
getting.  Also, milder for the most part.  Many sides from
both.  Every now and then, I will down a 5 hr power if I
have something that needs more attention.  Seems to go
ok with me and the drugs.  As Brew said Caffeine is your
friend!  I do notice that after awhile you do seem to get
used to them and things seem to level off.  Not as tired
or as dumb!  Well, let's leave it as not as tired anyway!  :D

Hope you are PF anyway and the Verap is helping.

Peace,

Boski

I know you feel terrible.  I won't take Tomamax...wouldn't be able to function at all.

I'm on Verapamil and it was making me so tired and fatigued, somedays I couldn't accomplish anything. They started me on Lyrica for neuropathy and neuropathic pain from back and neck surgerys. Now I'm awake! Very dumb though. Last night I put my paper plate in the sink and started to put my real fork in the trash. So on both of these at the same time- I'm awake and can move around. Just dumb and clutzy. My body is moving faster than my mind or my mind is moving faster than my body-haven't figured it out though.

Hey, its better than the CH's so if CH's are the main dish I'll
live with the sides. I'm an episodic so I get vacations from the
madness thank "well someone" I don't know who!  but I
thank you! I don't know how you guys live chronic, wow, no
break from the beast.  Talk about a visitor that staied to long
and smells like fish!  That's some smelly old rotting fish!

Topomax to the max baby!  :D  Dumb as Dogdooo!

Hey I have a bright side 9 years ago Doc said quit smoking
might help (didn't help the CH's) it did help my health!
But, I gained a lot of weight.  Well, that dropping with the
Dope-o-max faster than I put it on!  Yeah baby! Back to
my fighting weight in a few weeks!   ;)
I have been dropping it slowly but the last 20-25 has been
killer.  Are they listed as diet pills!  Kidding!!!! 

Have a PF  weekend all!

boski wrote on Aug 13^th, 2010 at 3:03pm:

I'm an episodic so I get vacations from the madness thank "well someone" I don't know who!  but I thank you! I don't know how you guys live chronic, wow, no break from the beast.

You realize that in survey after survey, chronics say they would rather be chronic - that way there's no guesswork, no looking over your shoulder. You just know what to expect.

Hey Brew:

Told you I was dumb as shit! 

Leave it to me to go against the grain! 

Normally I get some smaller warning hits before the off
the charts hits come.

I started as once a year, then it was every 2! yeah baby!!!!
Last time I got a warning, last year started med's for a few
months and was fine for a year! Can I hear a yeah baby!!!
Then this year Whamo!  Hit hard just like I remember,
but it was 3 years ago I forgot the routine!
That's what you mean?  Brew, not remembering how to deal
with them.

I'll be myself again soon I think, I pray, I hope! And drug
free!  For I hope maybe 1 - 2 years.  Maybe 3 if I get lucky.
I'll  take that over chronic, but if that's what the survey
says! They must be right.  I'll pull my head out of there!

I Love My vacations as I call them, Great imitrex stock time!
I get my pile nice and high for the next visit. 

Don't get me wrong I haven't a clue but any time away
my friend is time well spent.  Even if I spend it with my
head up there so deep I start to see light again if that's at
all possible!! 

Hey have a great weekend everyone,

Boski

I think what is meant is that there's no trying to figure out, am I in cycle, am I out of cycle, do I start to taper my meds, etc., etc.

I'm going to get hit today. Period. Since this has happened for the last umpteen weeks or months, I know what to expect and what to do to combat it.

That kind of thing.

I've been both episodic and chronic. Like you, I like having extended breaks as well. So I guess my attitude goes against what the surveys say, too.

Hey Brew:

I feel for ya!  All I know I look forward to that next break!
You have the knowledge of both, you know how the other
half lives!  Hope your in a PF cycle at this point in life!

Have a gr8 one man! 

Boski

I started to hold the guitar again so must be getting used
to these med's cause it was like a switch, stopped playing
after 7 months of almost everyday 1/2hr + I hope I play
better after I stop taking all this stuff. But I am playing
again and enjoying it.  That's a good thing!  Peace all.

Brew wrote on Aug 13^th, 2010 at 5:06pm:

I think what is meant is that there's no trying to figure out, am I in cycle, am I out of cycle, do I start to taper my meds, etc., etc. I'm going to get hit today. Period. Since this has happened for the last umpteen weeks or months, I know what to expect and what to do to combat it.

Like you, Brew, I've been both episodic and chronic. Given my druthers, I'd prefer to be neither ;). Still, as I've said before, going from chronic 4-6 times a day, to chronic once a day, kind of leaves me looking for what to do when my chronic cycle times come around. It's weird. Come 2pm, or 4pm, I'm expecting the hit, am all ramped up for fight or flight, and to my relief nothing comes (so far), but that reflex mechanism has already kicked in. I'll take it, though. Maybe I can unlearn years and years of conditioning. Blessings. lance

Keep that damned hack under your arm Boski, glad to hear your pushing the strings again! ;)

Joe

People with chronic get many attacks a day too don't they?
With no break, I see that as hell with no relief every day!

Wimsey1  I'm with you on the druthers of neither!  120%

Joe: I'm the Hack!  It's a beautiful instrument when someone
else touches it!  ;)  One day I'll make something that
resembles music I think.

Quote:

People with chronic get many attacks a day too don't they?

Not necessarily. Chronic just means no break that lasts more than thirty days.

Brew wrote on Aug 14^th, 2010 at 4:57pm:

Quote: People with chronic get many attacks a day too don't they? Not necessarily. Chronic just means no break that lasts more than thirty days.

Oh, So there is minor relief!  OK,  But still Blows! 

Yeah, still love it when I say I deal with headaches and
the person I'm telling says yeah I had one like that once.

Yeah, buddy I'm sure you did.  That Excedrin Migraine
works well right?  "Yeah, after about 1/2 hr I was starting
to be ok, but I thought I was going to die!" Yeah, I know
just how you feel bud!  Should be careful with those and
drinking I hear that can make it happen!  "Oh really"  Yep
That's what my Doc told me bud, next time think twice
before you chug that micky!   What a moron!  some people
if I could only take 2 and call the Doc in the morning!  what
a relief that would be!  Some people are lucky.  Wish this
small piece of the population with CH's would all win the
Mega Millions or Power ball.   Wouldn't that be a Hoot!   
Lets pick a good number and play!

Not a moron - just uneducated.

Brew wrote on Aug 14^th, 2010 at 4:57pm:

Quote: People with chronic get many attacks a day too don't they? Not necessarily. Chronic just means no break that lasts more than thirty days.

I've no idea if I'm chronic or not yet. I've had CHs for the last three months, with the longest break being 6 days. Three months seems to be longer than most people for episodic.

How long do I have to wait before I know which I am?

I Know Brew.  Bad Joke!   :D

Not sure how to tell, But I have gone 8-9  months.

Mike NZ wrote on Aug 14^th, 2010 at 8:49pm:

Not necessarily. Chronic just means no break that lasts more than thirty days.I've no idea if I'm chronic or not yet. I've had CHs for the last three months, with the longest break being 6 days. Three months seems to be longer than most people for episodic. How long do I have to wait before I know which I am?

By definition, if you go 12 months without a break of 30 days or more, you are chronic.

They're thinking of changing this definition, but it's all we got right now.

Hello Everyone,
Thanks for all the great advice!  Joni, I think I will try tapering.....next week...!!  It’s just weird for me to be so afraid of this beast... I’m not afraid of anything else but this stupid thing!  I like spiders, snakes, rats, cats, dogs...okay, you get the picture...I’m a Mississippi girl.

I had a couple very small hits this weekend and it threw me for a loop.  Was able to maintain without drugs and only the a/c vent in my face in the car.  I’m seeing my PCP  for the first time since my diagnosis tomorrow.  Not sure if she knows about CH and not too sure what to tell her.  I guess I will print off something from the web site and have it ready just in case.  I know she will have something to say about the weight gain...this time I have an excuse.... the pred!  Lol
And thanks for the laughs and banter... it’s great medicine!  lib

Good luck tapering!  However, if you had some small hits, I wonder if it is too soon.  BTW...did your hits coincide with the pred taper?  Just asking.

Hi Joni,
It's been a while since the Pred.; I was on 60 mg for about three weeks and then started to taper.... took longer than the neuro wanted but I was so afraid to give it up. I'd had about all I could take of trying to rest propped up in the bed so I wouldn't fall asleep. Then having to work without any sleep.  So, to answer your question (sorry, I digress...a lot), I had been completely off pred about 10 days or so before I started to get the little hits. I continue to have this pressure, not pain, behind my eye and some twitching on one side of my lip.  I didn't have any of that while taking the pred.

I went to see my PCP today, I forgot to print off the info, I forget a lot of things these days. She acknowledged that she knew about clusters but I doubt she knows a whole lot a she didn't elaborate nor answer my Verapamil. She was too interested in whether I had my mammogram this year!  Are you kidding me, my mammogram!!! I'm telling you I have these attacks that feel like a space shuttle is launching out of my head while an auger is trying to drill into it all the while someone is poking my eardrum out with a knitting needle and stabbing my eyeball with a butcher knife and spooning the pieces out and you want to know if I've had my yearly mammogram!!!

Whew!  Okay, that was my rant for the day... she also wants me to take a baby aspirin and continue to lower my cholesterol (total current 111) because I've had a stroke... which btw, felt like a bee sting compared to this beast... oops, here I go again.
lib

Lib if you are still on the Verapamil you may want to hold off on the aspirin.  The two do not go together!  One of the 1st things neuro told me is No Aspirin and No grapefruit or grapefruit juice.

Please double check with Neuro or Doc if you are still on the verapamil.

Hope things get better soon, I know what the whole forgetful thing is like and the odd twitches too for that matter.

Have the doc stick a red hot poker in her eye and try to sit through a mammogram!!!  Bet she doesn't last two seconds!   :D

Hi Ginger,
I should have asked about the contraindications and did not. I am still on the 240 Verap so I will hold off on the aspirin until I see the neuro.  Thanks for the reminder. Do you think the memory loss and twitches are due to the Verap or is this something most CHers deal with?  My neuro wants me to get my disability paperwork in order and so far, I don't see a reason other than the memory loss; it REALLY messes me up at work. I figure things will straighten out once I have my pattern and plan in place. Thoughts?

Hi lib,

I understand your frustration.  Believe me.  But you can't expect your PCP to know much about CH.  It's just beyond they're education.  And he/she is right to be concerned about your Mammogram and heart history. 

Your Neuro is the one to talk to about CH.  It is your PCPs job to make sure nothing else like Breast Cancer slips through the cracks.  After all, as bad as it hurts, CH won't kill you.  Breast Cancer on the other hand...

You just have to accept that Medicine is very compartmentalized these days.  Not every Doctor will take the time to learn about an illness they never plan to treat directly.  Especially when it only affects a few patients they'll see in a lifetime.

What my PCP knows about CH I educated her on.  I'm lucky that I found one with sufficient intellectual curiosity and the interest in her patients to want to learn.  Of course, little of that sticks from one appointment to the next  ;D  But at least she remembers hearing the words before.

If it really bothers you that much, find a new Dr.  If on the other hand you have adequate access to your Neuro then you may find the combination sufficient.

Either way, you have so much to deal with in fighting the beast.  Conserve your energy for that battle.  Let the ignorant stay so.  You'll find yourself eating fewer antacids in the long run.

Good luck...

-Dennis-

Hey lib!
Just thought I'd chime in here for a moment...

Please, if you've had a stroke (assuming it was ischemic (lack of blood flow due to blocked arteries in the brain) rather than hemorrhagic (burst blood vessel in the brain) you need to be on a blood thinner.  Are you on another blood thinner besides the aspirin?  Please, don't wait until your next appt, but go ahead and give your doc a call about your questions for your peace of mind.  In general, while verapamil can increase the anti-platelet effects of aspirin, it isn't a contraindication to aspirin use - it's more of a caution of something to be aware of....

As for the memory loss, verapamil can make you tired and constipated and CH itself can make you an idiot from lack of sleep and stress, real memory loss from verapamil isn't generally a known common side effect from the medication.  Please, particularly as you've had a stroke, talk to your dr further about these changes and any other medications you're taking (or not taking)...

God bless and many PF days for you!!!!!

Hi All,
Thanks for the replies! Yes, I have had an ischemic stroke and I understand the benefits of aspirin therapy (i work in healthcare) however, I have a strong family history of hemorrhagic strokes and aneurysms as well. I recently lost my dad to a hemorrhagic stoke that could not be controlled because of aspirin therapy. So I'm sure you understand my concerns; adding aspirin to the Verap could be dangerous in my situation. I think I may be better off to wait a bit and wean off the Verap and see what happens with the CH. If I am episodic, I can resume my aspirin therapy if needed after I finish the Verap.; I just need to be careful. As far as the mammogram goes, I know the importance of keeping an eye on things as I have had a tumor removed (I also worked in oncology for a number of years) hence, yearly mammos as opposed to every 3-5 years; age dependent.  I guess my complaint with the PCP was that NOW is not the time to discuss normal healthcare issues and preventive medicine. Today’s visit was supposed to be a follow up from the neuro visit and plans to move forward. I guess I expected too much from her today; it was as if she blew off the dx and it was business as normal.
The CH is very new to me and, as I am finding out, most healthcare providers. We wasted 5 months of compartmentalized medical practices to discover the hypothalamus was to blame for all the symptoms. I guess I was just too dependent on my healthcare providers. It was actually my husband who put it all together after I had my first real cluster attack in May. This is a wonderful support site with so many experienced folks. I have learned more from this board than I ever could have on my own. Thanks so much for the compassion, caring, and advice!!!  lib

I agree with the others.  Because of your history, talk to your doctors soon.  If you have a Cardiologist, find out what meds you should and shouldn't take for Clusters. 

I do not feel comfortable suggesting for you.  I will tell you that, for me, 10 days after Pred is when it could start hitting me again (I don't do Pred anymore, either).  It took me too long to get off of it.  But...as always, everyone is different.  I'm just throwing it out there.  I have noticed that some people can just stop their preventatives and abortives and some people can't.

I know exactly what you mean about the pressure (and for me-numbness, eye problems, and ear ache all on that side)...not really cluster pain...but you know that's what it is trying to do and it keeps you stressed!!  My last 2 cycles, I had that so badly for several months afterwords, but never a headache.  I couldn't even lie on the affected side of my head.  I just knew something was wrong, but I went to a new Neuro and had an MRI and everything was normal....I was so relieved, though it was hard to believe.  She said that she sees this all the time.  It is fine now!!!

Hope this helps!!!!!!

Joni

Hi Joni,
When all this started back in January I had every cardiology test there is and everything is normal except my heart rate which is about 112 resting. We've concluded that is normal for me and (my opinion) is probably due to the hypothalamus since it controls the chemicals that determine heart rate. I've had this heart rate for as far back as I can remember. The good thing is there is no plaque and the anatomy of the heart is perfect. On my final cardiology visit he told me to drink gatorade and go for a walk.. LOL!!! Now, I like that suggestion!
I understand the ear thing too; for me, I know when I'm going to have an attack because I get this pressure in my ear. After an attack, sometimes a couple of hours later, a tee tiny bit of fluid drains, maybe a drop or so. I told this to the neuro and he just looked at me like I had three heads.  This happens to someone else on this board...can't remember who though. Aahhww, this memory thing is going to drive me insane! LOL
lib

I know what you mean about the ears and my doctors thought I was crazy too...except the Neurologist...she believed me.  I have had so many unusual ailments due to clusters and doctors looking at me like I am making it up...that it has made me reluctant to talk about it.  It makes you feel crazy!

Glad you have a Cardiologist!  I am surprised the Verapamil doesn't slow your heat rate...it does mine, but I am very sensitive to all meds (and life in general), it really sucks except for creativity and emotional intelligence.  I am one of those red headed, natural curly hair, freckled, light skinned, blue eyed freaks of nature. 

Hope you feel better soon!!!

Joni

lib wrote on Aug 17^th, 2010 at 9:04pm:

Hi Ginger, I should have asked about the contraindications and did not. I am still on the 240 Verap so I will hold off on the aspirin until I see the neuro.  Thanks for the reminder. Do you think the memory loss and twitches are due to the Verap or is this something most CHers deal with?  My neuro wants me to get my disability paperwork in order and so far, I don't see a reason other than the memory loss; it REALLY messes me up at work. I figure things will straighten out once I have my pattern and plan in place. Thoughts?

With me the Memory loss seems temporary and comes with the CH hits, my thinking is never particularly good just before, during and after a ch hit.  Yes the Memory thing and lack of clear thinking are an issue for me at work too.  I have made a few mistakes this way thankfully they were fixable and my immediate supervisor is understanding for the most part. 

The twitches come and go, I once had the eye twitch going on for MONTHS, talk about annoying!  The lip twitches are more sporadic for me and I don't get them often.

At least your neuro is really thinking about you as a whole with having you get your Disability paper work in order, my current neuro isn't so caring.  Yes, I am looking to change and am currently on a waiting list for a new neuro.

I hope this helps! 
PF Wishes!
Ging...

lib wrote on Aug 17^th, 2010 at 11:17pm:

It was actually my husband who put it all together after I had my first real cluster attack in May.

Please go find your husband, put your arms around his neck and give him a great big hug and thank him for taking such good care of my cluster-sister.  I like to say that supporters are the rock to which we cling in the storm.

-Dennis-

Lettucehead wrote on Aug 17^th, 2010 at 9:27pm:

As for the memory loss, verapamil can make you tired and constipated and CH itself can make you an idiot from lack of sleep and stress, real memory loss from verapamil isn't generally a known common side effect from the medication.

Agreeable.  The info that comes with each script doesn't list memory loss with side effects and for myself not been noticeable using higher doses.  The other effects in conjuction with CH Kirsten mentions have been posted.  We can be differently affected.



My very elderly doctor just retired, I'm procrastinating looking around to replace his sage advice.

I once had what had to be surely a shoulder injury extending through my collar bone, sore for months.  Mentioning it to him, I raised and lowered my arm up and down so he could hear my concern something's wrong with an audible shoulder joint crackling noise each time.  Approaching me and grabbing my forearm and shoulder he gently lowered it saying, "Don't do that with your arm."  Eh, in time it's just fine without a creak.

Don't know.  I can see him looking over notes from previous visits asking how I been.  Twitches.  With a casualness uninterupted witout even looking up, I can see him saying, "Eat a banana."

I take verap, but in the dark answering the mysterious complexity of medicine.

"With me the Memory loss seems temporary and comes with the CH hits, my thinking is never particularly good just before, during and after a ch hit.  Yes the Memory thing and lack of clear thinking are an issue for me"

My sister and I call it cluster brain!

Joni wrote on Aug 18^th, 2010 at 11:27am:

JustNotRight wrote on Aug 18th, 2010 at 5:16am: With me the Memory loss seems temporary and comes with the CH hits, my thinking is never particularly good just before, during and after a ch hit.  Yes the Memory thing and lack of clear thinking are an issue for me at work too.  Ging... My sister and I call it cluster brain!

That's more polite than the terms I generally use  [smiley=yikes.gif]

You all are too funny! 
Yes Dennis, I did hug my hubby; he is such a wonderful support! He's an engineer so he is used to solving problems. He read all the support info and does a wonderful job just sitting and waiting for instruction. I'm in such a panic during an attack all I can do is bounce around and bark orders....... my poor hubby...what a great guy!

I've decided to try tapering to half the Verap dose and see what happens. I have all my abortives stocked up just in case. I really think the Verap is making me too sleepy to function. I really need to stay employed which means I need to stay awake! ;D I did much better today without the morning dose.

Joni, I understand about the fair skin etc. We call it the Barry (Irish) 2%... if it can only happen in 2% of the cases..it will happen to someone in my family!  LOL

lib wrote on Aug 18^th, 2010 at 9:20pm:

You all are too funny!  Joni, I understand about the fair skin etc. We call it the Barry (Irish) 2%... if it can only happen in 2% of the cases..it will happen to someone in my family!  LOL

My Internist calls it Scandinavian Decent....seriously!!!  He says it comes with a host of nuisances that one of my daughters and I battle.  Craaazy, huh?!  I will have to say that I do notice it in other white, reddish, blue eyed people as well.  We even studied this in my classes in college pertaining to children.  Oh, well...everybody has something!  We are a lot of fun and very loving!  Pros and Cons, Yin and Yang...life is a paradox!