Hey, my name is Bre. I dont really know where to start. I've been on Vyvanse for 3 years, I remember having "rounds" of headaches on it before, usually when it wears off. I'm still taking Vyvanse but these headaches are different, like clockwork everyday. No matter when I take my Vyvanse, I get lightheaded, behind my eye starts to throb, and i get slammed with some of the worst pain i've ever experienced at 3pm. They wake me up at night and I have to take Zzzquil and get out of bed to pace until the Zzzquil kicks in. I know that my Vyvanse can cause the side effect of a headache, i've tried not taking it for days and I get what you guys call "shadows" at the time i usually get the headaches. I dont know if my Vyvanse is keeping me from getting CH during the day until 3 and then they just hit. Or is it causing me this much pain? Could it be a trigger? I'm considering switching to Ritalin, i have an appointment with my neuro on April 11th, but that's seriously not close enough for this amount of pain. I know its clusters because even a sip of alcohol triggers it. :/ please help? <3

You should go to the doctor.

            Potter

I've seen 2 doctors and my Psych about this and nothing was done. I was hoping some one had experience with ADD/ADHD drugs and CH.

Hi and welcome Rocketbootz

Potter is right with his suggestion about you needing to see a doctor. What we can not do here is to give you a diagnosis. What we do suggest is that you see a headache specialist as GPs, even most neurologists do not have the skills or experience to diagnose complex headache types.

Whilst what you have described of your symptoms is what you might experience with CH, the complexity is that there are multiple other causes of the same symptoms which can include things like tumours, so the diagnosis needs to include confirming the symptoms plus ruling out all the other possible causes.

What adds to the complexity is that for many people they do not start with the classical CH symptoms but they evolve over weeks, months or years.

What I would do is to start to keep a headache diary with the date and time of the headache plus pain levels, symptoms, duration, any medication taken and anything else that could be associated. This can help with the diagnosis and assist in identifying triggers.

In the meantime read up all you can about headaches.

Thank you Mike, what's a GP?

G'day Bootz, welcome, and as Mike says it's not simply a matter of seeing your doctor, but finding one who specializes in the various headache disorders.

All headaches are horrible but once you know just what you're fighting things can become far more manageable, so let us know where in the world you live and we may be able to make some suggestions.

Things can only get better,

Brian.

I've had these for a month and a half so far, which is what lead me to CH, along with the symptoms. I just need to know if theres more i can be doing to help, I do what a lot of people here have suggested and take D3 and magnesium. I had my D3 levels checked and i came back a little low but not deficient. Which is what i thought it was at first, that or a stroke symptoms, the drooping and such. Is there any other preventative things i can do? I stay away from liqour and limit my smoking, but I'm become reliant on Advil but thats starting not to help anymore.

I live in Las Vegas, but if its for the sake of getting rid of this, or at least easing it I'm willing to go within driving distance, Pheonix, Cali.

We've people on board from around that area and I'm sure they'll help if they can.

In the meantime you may like to try slamming down a Red Bull at the first hint of a hit. Horrible stuff, I reckon, but the caffiene/taurine mix is helping a lot of people. There's also hot and/or ice packs for your temple or back of your neck.

Painkillers aren't often much help, and can cause other problems, but I found when I did use them I could get away with only half the dose if I washed them down with strong coffee. That's but a suggestion, of course, as you are responsible entirely for what you choose to use.

Good luck and let us know how you're getting on because we care.

rocketbootz wrote on Mar 23^rd, 2016 at 7:44pm:

Thank you Mike, what's a GP?

A GP is a General Practitioner, sometimes known as a family doctor, depending on where you are in the world. They can be great for routine things but for something like CH you need a headache specialist as a GP knows a bit about lots of stuff but not enough for CH.

rocketbootz wrote on Mar 23^rd, 2016 at 7:50pm:

I live in Las Vegas, but if its for the sake of getting rid of this, or at least easing it I'm willing to go within driving distance, Pheonix, Cali.

There is a person on here from Las Vegas with the username LasVegas. Send him a PM and I'm sure he can give you some very local suggestions. You can send him a PM via:

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

Thank you guys so much for your help so far. I know I need the actual diagnosis but this seems to be the only thing that makes any sense.

Brian-I've seen the energy drink stuff, trust me I've combed through your guys' boards. Kind of creepy. Does coffee work as well? The vyvanse elevates my heart rate so much already energy drinks are kind of hard onmy heart.

rocketbootz wrote on Mar 23^rd, 2016 at 8:19pm:

Thank you guys so much for your help so far. I know I need the actual diagnosis but this seems to be the only thing that makes any sense. Brian-I've seen the energy drink stuff, trust me I've combed through your guys' boards. Kind of creepy. Does coffee work as well? The vyvanse elevates my heart rate so much already energy drinks are kind of hard onmy heart.

  Never self diagnose.  You need to see a headache specialist.

      Potter

Dunno about the coffee working on its own, Bre, as it seems it's the caffiene and taurine together that makes the energy drinks so effective for some but you're completely right to think twice about it if your heart rate is a concern to you.

(I've long wondered what the makers Red Bull and similar make of the way we use their products.)

Perhaps it's something you could discuss with your doctor or a pharmacist, but I agree with you always erring on the side of caution.

rocketbootz wrote on Mar 23^rd, 2016 at 8:19pm:

I've seen the energy drink stuff, trust me I've combed through your guys' boards. Kind of creepy. Does coffee work as well? The vyvanse elevates my heart rate so much already energy drinks are kind of hard onmy heart.

Some people have used caffeine in alone normally from a strong coffee. As to it working "as well", this is hard to know. Energy drinks like Red Bull contain:

• Caffeine - acts as a vaso constrictor (just like oxygen and triptans)
  
• taurine - a calcium channel antagonist (just like verapamil, a common CH preventive)
  
• bubbles - this will help speed up the absorption (compare how quick champagne goes to your head and a still wine)
  

However for the heart rate change, caffeine is normally associated as impacting it so this would cover coffee and energy drinks, although this is not a clear cut result (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE).

But since you have concerns, do talk it over with your doctor or a pharmacist. Pharmacists are often more knowledgeable about drug interactions and often love being asked interesting questions like this.

Hi Bre, and welcome,
You mentioned Advil were helping, this is not the norm when it comes to CH's, as with all other over the counter pain killers. So, as others have mentioned, it's always best to check in with a Headache Specialist for a proper diagnosis.

In the meantime, take the cluster quiz, the link is to your left 4th from the top, and this might make things more clear for you.

Cheers Hoppy

Bre, you've got my phone #, call me this weekend and we'll meet at a Starbucks or somewhere and I can help answer many of your questions, including local doctor recommendations.

-Gregg

Hmmmm.... I replied same day and told her I was out of town, but would return on Thursday night and could meet w/ her on Friday at a time of her convenience. Gave her my home #. She never replied, never called, and I conclude she does not have CH's. Because if she did, she would do ANYTHING to learn as much as possible as quickly as possible to get out of pain. Can't help everybody I guess  ::)

-Gregg in Las Vegas

LasVegas wrote on Apr 4^th, 2016 at 8:37pm:

... Gave her my home #. She never replied, never called, and I conclude she does not have CH's.

Don't be so hard on yourself, Gregg. There could be lots of good reasons she never called.

Perhaps she had a headache.

Thanks Brian. Now that's pretty funny  ;D