Hi, This is my first post here, hello everyone! I was going to start in the introductions section but...i have a headache! (ok to laugh)

I have this Coq10 that I bought about a year ago and I remember taking it once and having bad side effects. Its been so long that I dont even remember what they were but i DO have a distinct memory of "not good".

In my desperation now I am backtracking on anything and everything that might be hopeful and I just keep seeing on the internet how CoQ10 has very little side effects.

So my question is, what side effects have you had (and how bad)?, Did they go away? Did it ever actually cause a headache? Did it keep you awake at night? and anything else.

Your help and companionship is greatly appreciated.
BTW..I have CDH for about 1 year now. And a history of migraine since a child. male 52 now.
propanalol
maxalt
amerge
percocet (a little)
otc
(not all at the same time )
rebound=probably to some degree

God bless and have a good day.
Lance

Hiya Lance (that's a HIGHLY regarded name around here!)...welcome.

Barb (SMARTER than the av-er-age bear) steered ya right! Now then...several questions.

What's your diagnosis?...(from a headache specialist we hope.)  I'm a one-note Jonny...I know some CH...but not CDH....not thinking they are the same.

Why the concern re CoQ10? Prescribed? For what?

I take 100mg/dy...for various reasons...no side effects.

We look forward to more info...keep in mind...we aint docs.

Best,

Jon

dear jon,wiimsey and barbara,
thank you for your answers. like i said, i remember having bad side effects (i think it was a type of increasae of stress and a feeling of uneasiness) but it been so long i cant really remember.
I want to try the coq10 (jon, not perscribed but recommended along with b- vitamins from a neurologist and have heard good for headaches)again but i am extremely sensitive (have always been) and afraid to get a bad reaction. I get a rush of pain even from a faint smell of auto exhaust for example.
For diagnosis from 2 neurologists and my GP (the most helpful) there is not a specific diagnosis (they wont say because they dont know ,which i understand)but I am sure it is CDH (to an extreme level) which I wake up with every day and pain increases as the day goes on, its exactly the same every day. There is also migraine which ive had since a child which happens about 2 or 3 times a week on top of the CDH. and intensity is worse if rainy weather comes within about 50 miles. sry, didnt mean to sound like compalining, just wanted to answer
So, so far you both have had no raection, which is disappointing, im sorry that didnt help you but im edging closer to maybe trying again.
Do you remember if CoQ10 disruped your sleep to any degree (i cant sleep well already) and wimsey please tell me for how long you took it.
Sry, I havent answered sooner (no offense barbara) but was a little turned off by barbara telling me the percocet or any narcs wont work (because it does help for me) and I didnt know how to react to this comment, this is a serious issue, others are reading it and the statement has to be answered.
So for the record besides taking percocet in conjunction with a triptan during a very bad attack when I have to go to the ER (which is at least once a month) the only thing that helps is an injection of dilaudid which is a narc.
I have to add for everyone reading this to please be careful with percocet, its addictive.
All that said I hope we can all still be friends and help each other.
Barbara please tell me more about the oxygen. Do you think that it might be helpful? It is probably the only thing that I havent tried.

CDH is Chronic Daily Headache.  It is not clusters so I don't know if any of our headache suggestions will help there.

Bob P wrote on Mar 14^th, 2012 at 7:05am:

Great post actually.  Succinct and  truthful.

     Potter

userq,

With all respect, you need to grow some skin!  No one attacked you, in fact they went out of their way to try to help you.  You were warned against Percocet for good reason.  Percocet, and other narcs or opiates, does NOT work for CH.  This is a board dedicated to CH, those who suffer from it, and their supporters.  That does not mean that we don't care about others with other issues.  One of our highly regarded members suffers from SUNCT, but has been able to extract value and support from this site.  We offer the same to you if you wish to participate.  We are not experts in CDH, but many of us know more about CH than do most doctors.  Most of what we know may not cross the channel to meet your needs, but some of it will.  It is your choice.

You suggest that maybe the "peeps that run this site should make it clear" that this site is about CH.  I will quote the very first line beneath the header on the Home page:  "This site is devoted completely and exclusively to those that suffer from, and to the supporters of those who suffer from Cluster Headaches!"  I believe that to be clear.

Percocet can be dangerous, as can all narcs and opiates.  I know!  When first diagnosed with CH over 30 years ago I was prescribed percocet and another opiate because at that time not much else was known about CH.  I got hooked and had a devil of a time getting myself off cold turkey.  you will find most of us will jump right away when someone says they are using one of these pain medications that really has no effect on their CH, but can be so dangerous.  It is not you that we are attacking, but rather the drug given you that can also destroy your life.  May I refer you to the post "Dancing with the Devil" that is "stickied" at the top of the message board?  Please read it and then determine if you want the risk of continuing your course of treatment.

We ask a lot of questions of newcomers to the board because while we are not doctors, as I said, most of us have more knowledge about CH than do our Drs.  If we don't get good information we don't have a way of steering you in the direction you need to pursue.  So don't take offense, take action.

Jerry