Hi, I have suffered from headaches since just after leaving school (I'm now 30).  After almost constant visits to my GP I was sent to a neurologist in 2005 who dignosed me with Chronic Tension Headaches.  From the moment I started to research about these headaches it didn't really seem to match my symptoms, plus the fact nothing they gave me, which were a variety of antidepressants, done anything of note.

Now I had always been on off with these headaches and tbh I was stupid and naive in believing everything the doctors told me.  That was until Christmas just gone, I ended up in hospital on Christmas Eve with Septic Quinsy, now I'm not blaming this I'm only mentioning it as its the only thing that happened before  my headaches headaches from a now and then unbearable pain, to every single night in agony. 

I have since come across many many things on CH and there is something on almost everything I see that I relate to.  I have been to my GP several times over the last 3-4 months, over that period of time I have only been prescribed Pizotifen.  I started at 0.5mg per night, then moved to 1mg per night, then to 1.5mg pernight.  I have been to my GP today with the news these tablets haven't even touvhed my headaches. She has now re-referred me to a neurologist while upping my dose of Pizotifen to 3mg (1.5 in morning, 1.5 at night).

I've been reading through this site (I will read as much as I can before im due my next period of hell - normally between 00:00 and 4 or 5 am) and this is probably the most upbeat I've felt about this 'thing' since they became daily, the wealth of information and the no longer feeling alone has comforted me a hell of a lot more than Pizotifen, amitriptyline or any of the other medication I have been on, plus (barely) any of the information I have received from my GP, who just spends her time reading her little medicine book and hmmming lots, with no info coming my way. So I would like to say a thankyou to the people who take the time to care for this site as I'm sure I'm not the first to feel such comfort when FINALLY finding somewhere that understands and listens.

So thats me, I guess I would just like some advice on what I should do if possible, or is it pointless to do anything until I've seen the neurologist ? The thought of having to wait a further however many weeks or months for an appointment with no relief whatsoever really kills my spirit.

Thanks for any help you can give, all is appreciated.

Never heard of tonsillitis having anything to do with ch.

              Potter

I'm new to this site and have benefited greatly from the experience of some very knowledgeable people here with great ideas.  Check out the oxygen page.  This has made a dramatic improvement in my life over the past week.

Potter wrote on Jun 14^th, 2010 at 2:03pm:

Never heard of tonsillitis having anything to do with ch.               Potter

Thankyou for your reply, I see from your post count and understand you must be knowledgeable about this condition, but you need to look up what quinsy is, its certainly not tonsillitis, its an abcess that forms in the throat.  I also never said it had caused CH, I have had headaches since I was 16, I got quinsy at 30.  The only reason I mentioned it was because as a result of this illness I never ate, slept or drank properly for a few weeks and lost a mass amount of weight. It also seemed directly after this that my headaches come every single night, I just wandered if anyone else had experienced it the same way, thats all.

Again, I'm NOT suggesting for a minute I know whats caused this, least of all blame Quinsy for it, I just thought the more info I give the better.

thingfishp wrote on Jun 14^th, 2010 at 2:04pm:

I'm new to this site and have benefited greatly from the experience of some very knowledgeable people here with great ideas.  Check out the oxygen page.  This has made a dramatic improvement in my life over the past week.

Thankyou very much I will check that page now.

Sorry .  I never heard of a complication of tonsillitis,  nor weight loss having anything to do with ch.  See a competent headache specialist.

          Potter

Hi and welcome.

We old-timers,  if you want to call us that vertainly understand that upbeat relief in finding others that suffer.  Always thinking we were alone.  Always being mis-diagnosed and for women..being told we have Migraines because ONLY men get CH.   What doctors know about this condition could fit in a thimble.  We have to be our best advocates.

I'd like to throw out a suggestion.  Could it be that your throat problem causing your headaches to ramp up in intensity, duration etc.  be no more than your normal cycle which was going to ramp up...Quincy or not.?    I am chronic, but episodics seem to have the HA's ramp up just before they go away for that cycle.

I'm sure that being worn down, physically and mentally didn't  help it any either.


Keep reading around here.  No one here is a doctor but like I said...we've HAD to be our own advocates and the knowledge around here is outstanding. 

Linda

Hey welcome to the nut house! It is a hell of a relief to finally put a name to something. Bad news is, there is no cure yet. Good news is, there are some very effective treatments available to manage them.

Talk to the neuro about a 2 pronged approach to your head aches. Avoid pain killers, short of knocking you out, they do nothing for ch and cause more problems then they solve!

1: A good prevent med. That's a med you take daily, while in cycle, to reduce the frequency and the intensity of your attacks. I use lithium at 1200 mg a day. That's  a low doseage relative to what people with psych problems take it at, if i didn't tell you I was taking it you'd never know. At that dose it blocks 60-70% of my attacks. Verapamil and Topomax both have  a loyal following, with verapamil being the most common first line prevent.

2: An abortive strategy. Oxygen should be your first line abortive. I can kill an attack in under 10 minutes using oxygen. 32 year sufferer here, haven't found anything close to 02 for consistent relief. Read the oxygen info tab on the left as it must be used correctly or it's about as helpful as huffing helium to talk funny!

Imitrex injectables and nasal spray are very effective but are prices and I don't like how it makes me feel. I still keep the trex injectables around but only use them when I'm getting creamed.

That's a basic start for you. For now, try keeping some energy drinks on hand, Monster, Rock Star, Red Bull, any containing the combination of caffeine and taurine. Chug one down at the first sign of an attack. I can abort or at least really reduce an attack using these. Hot or cold showers...you have to experiment to see which one works for you, ice packs on the neck, vigorous excercise...I used to go for a 30 minute all out run when I felt one coming on...oxygen is sure a lot easier! ;)

Start reading like a mad man. Doctors for the most part know very little about CH as most won't see a CH patient their whole career. It's your job to educate yourself and help your doctor help you. We will do anything we can to help you.

Joe

Lastly.....look at clusterbusters.com        not for everyone but their success rate is awfully high.

HeadFromHell wrote on Jun 14^th, 2010 at 1:51pm:

I guess I would just like some advice on what I should do if possible, or is it pointless to do anything until I've seen the neurologist ? The thought of having to wait a further however many weeks or months for an appointment with no relief whatsoever really kills my spirit.

I just want to throw in a word of caution: the neuro is the way to go, but if he/she isn't a headache specialist, you may or may not get the help you want. I just don't want a fruitless visit to "kill" any more of your spirit. You might go prepared with a few articles available here and maybe even some suggestions of your own about what kind of preventative and abortive treatment you'd like to try. All the preventatives have side effects. Using O2 (you need a script for that) and the energy drinks are great abortives with little to no side effects. God bless!