For the past two days I've been having one sided stabbing pain headaches near my temple and forehead (right side always) at 1:41 (EST). My right eye tears up and my right nostril becomes super congested, and my right side of my lip droops.  My mom is convinced they're cluster headaches, but wants to see my neurologist again to confirm. I had a few of these headaches over the summer that lasted seconds, and where not the same sort of pain. I had two very very bad ones one of which I was sent to the ER that felt like this pain. My mom got something similar when she was in her thirties. She also gets migraines. My dad does not get headaches and my brother and sister do not either.

So here I am :/
I live in Central Maine.
My medical history is pretty eventful for the average teenager (I'm sixteen)
I was diagnosised with Generalized Anxiety Disorder earlier this year and have been taking Celexa ever sense.
Last year I was given treatment for migraines and the diagnosis was confirmed a month ago. I take Imitrex (sumatriptan) in pill form for those headaches. By the way, you all know this, but totally different type of pain. I'm going to start on beta blockers soon for the migraine prophylaxis. It's my junior year in highschool, so I cannot afford to miss much school. I had a few suspected seizures that turned out to be just unknown origin fainting spells in school last school year. I had a spotless EEG and one that showed a minute of eletrical abnormality that was not epileptic in nature.

so that's my medical history. I honestly hope that I never have to post here again, because this is a horrid condition and I have the biggest amount of sympathy possible for suffers. I would never want this condition from what I've read, but I'm not sure what's going on and the headaches seem to fit the descriptions that we have read.

I've had two today so far. one at 9:05 ish (am) and 1:41 (pm) again. :/
I have a much more detailed report typed up for my doc and neuro and therapist (for the anxiety) that I'm going to work on with my mom later. The school nurse sent us a description of what she saw, as I was let out of school on friday due to this pain.

I have no aura with migraines, which from what I've read, is uncommon. My mother doesn't either, but the pain is completely different from what I've been experiencing these past few days. It feels like someone is ripping the back of my eyeball out through my temple while stabbing my head constantly.
The attacks are lasting 8-12ish minutes and come on in a matter of seconds, and leave in a matter of seconds.
I kick, scream, thrash, nothing helps. Unlike with my migraines, where I can lay down and be quiet while drifting off to sleep.
is it possible some of my migraines were not migraines and were the original phases of clusters?

As far as imaging goes, I've had two CT scans of my brain/head in the past year, both of which were clean. My MRI was also clean. I'm certain that they'll want to do more, but still relevant I guess.

My mom and I have b een educating ourselves pretty much all weekend. First, we need a confirmed diagnosis. After that and we decide where to go with treatment... I think o2 might be the best. Imitrex injections seem expensive, not usable all the time, needles (hate them), and problematic with side effects ( I basically go to sleep for hours after imitrex pills)

As far as spreventative goes, what have you guys had the most success with so I know what to ask about? I've heard calcium channel blockers are the best and help treat migarines (boom roasted, two birds, one pill)

Has anyone experienced constipation during your cycles? I haven't... you know... sense yesterday in the morning. I think it may be just my body's response to the stress and pain, but is this anoter symptom of cluster?
The only med I'm taking now is 30MG of Celexa which doesn't cause constipation.

I was going to show my family doctor, who was incredibly well versed in cluster headaches, the links you sent. I got to this paqge, and she said she's seen them before. She basically told me what I have are cluster headaches and started me on dexamethasone to try and break the cycle. She told me to take 1 100 mg imitrex after the first headache to prevent future ones in the cycle. If the dex. doesn't break the cycle, we're going to try nasal imitrex.

Constipation wasn't a thing, I managed to get it all out today and I'm not cons. anymore.
I'm up to two headaches today, hoping for no more.

as far as prophylatic she said she'd like to wait until I hit another cycle to confirm that it's really CH before starting verapamil
I started Inderal for migraines'

I've had three CTs and one MRI of my head in the past year, so she didn't think it was needed, as I fit almost all of the symptoms for CH and that type of headache wouldn't be caused by a tumor or anything.

She said that she's seen a few cluster cases in her 30 years as a family doc. All males.

yeah my PCP is a great doctor. I've been with her my hole 16 years and I trust her greatly to not mess up.

I think I may have had a shadow, but this is all new to me so I'm unsure. Last night around 9:30 PM I had what felt like a migraine that came on very fast, so I took pill imitrex (all I have) and it was throbbing, then after about 4 minutes, it just went away. My eye felt like someone was lightly stepping on it there after. Is this common?


Day 1 of the Steroid/Proprananol Treatment
4 AM - woke up from a dead sleep in a kip 4 or 5, quickly ratched up to a kip 8 for a solid 8 minutes before tapering off to a kip 4, then gone. I managed to get back to sleep around 5:30 and stayed home until 10ish to wait out headache 2.
9:06 AM - Kip 10, easily the worst pain I have ever had from anything ever. Trashing, kicking, I was screaming, punching things kicking. Lasted 15 minutes of sheer agony.
1:41 PM - Kip 8, I think the steroids had finally kicked in. Lasted 18 minutes, but did not hurt as much as the one at 9.

All and all, I am going to hope tomorrow turns out better and the roids and beta blocker will start to take effect.

welp, today was crappy.
I woke up at 1am(I went to bed an hour earlier than two nights ago) with a horrendous shadow and then clustered out around 3 for 8ish minutes. Couldn't get back to sleep. I tried to stay in school, but after 9:06 AM rolled around and I had a twenty minute intense pain attack. It didn't help that our assisstant princble was asking me if I had taken anything or if I was stressed about a class. I shouted at him that they were "f-ing cluster headaches and to leave me the hell alone" (stupid steroids make me super pissed)
I went home and slept when my mom picked me up because I was carrying a huge sleep debt. Woke up around 1:20 PM with a miserable cluster. My mom thinks that they're occuring at the end of my REM cycle (I had been asleep for 3/1/2 hours) which lasted about 2 minutes. Then 141 PM rolled around and I had a five minute cluster preceeded and followed by ten minute shadows.

so I'm hoping the roids start to kick in, because I'm losing hope fast.

my mom has been working on getting me a ped. neuro appointment in boston or Maine, but everyone is booked up until December unless it's urgent.

I've had 2 imitrex pills this week, so no more for the week, but I'm going to have my mom call my PCP and try at get a script for nasal imitrex.

re:O2 treatments. my pcp felt it was unrealistic for me to carry around an oxygen tank to knock out clusters and that imitrex would just be better.

tachead wrote on Sep 12^th, 2012 at 2:43pm:

yeah I know. I've been taking trex for migraines sense last year and aside from putting me to sleep, I haven't had any side effects, so she thinks I'll tolerate the trex the best and that 02 would be hard for me to use do too the shear size of the tanks required for cluster abortatives.

Got hit around 6:15 with a fifteener.

I read that you need 7 l o2 per minute, correct me if I'm wrong but aren't those big canisters?
I have no experience with pure oxygen and don't you have to breath from them for longer than just one minute?

I'm not opposed to the idea of carrying around a few Ls of O2, just curious about the logistics.

I'm headed to the docs tomorrow to get a script for nasal imitrex because it's obvious the steroid taper isn't being effective. It's cut my attacks in time, but not in pain level. I don't know if that's common or uncommon in clusters or indicative of something else at work. It's possible I was misdiagnosised, but I trust my PCP a lot. It doesn't mean she isn't wrong, infact I hope she's wrong, but I trust her to come up with the correct diagnosis. Been keeping my headache log with me at all times and reocrding when finished with the headaches.

I really have no idea what's going on, could someone explain to me how the O2 treatment for most clusters works? Do you guys just get canisters delivered to your place through a script and keep them around the house, or is there a special type of machine that converts it into 100 percent o2?
How long does it usually take to get O2 in the United States? I know I can get injectable or nasal imitrex quickly, just how long would I have to wait for a script for oxygen or a tank to get to my house?

edit: yeah the pillatrex idea obviously isn't working, and I'm done with it because I don't want to cause rebounds.
the dexamethasone steroid has been making me angry, hungry, but has been cutting the time spent in attack mode by a bit, but not the pain which is worse than when my first attack happened.

edit2: my mom just got off the phone with a nuero who worked with a friend of my grandfather. He gave us the name of a guy in Scarborough Maine and said to see the Neuro in our local hospital.
He said to take 600mg of Ibuprophen 4 times a day at regular intervals and that should supplement the steroid treatment. If that doesn't work, he said that an appointment with this guy in Scarborough Maine would be a good thing to do to get some more solid advice.

Agenda for tonight and the next couple days
1. Get sleep, hope for a PF evening
2. Get Nasal Imitrex or 02, perferabbly both
3. Take the meds as I've been instructed.

You need oxygen! I see new people come here all the time, and when we say oxygen... they seem resistant. I can relate to this because I was resistant when I first heard about it. These headaches are industrial strength, and oxygen is just oxygen, no strong pill, no injection, no invasive surgery, how can this possibly be a REAL treatment for CH?
My self and most people here are blown away when we finally figure out how well it works. It is credited with saving more lives, and helping people get their lives back, than anything out there!
OK, sounds complicated... but it is NOT. Oxygen is very simple, cheap as crap compared to other meds we take, and the most effective abortive we have... bar none.
So, read the oxygen info link at the left, have your mother read the information, and be ready to fight for it if your doctor comes up "resistant". Print out the material and be prepared to give it to him if necessary.
You want answers, this is the first step for anyone with CH as far as I am concerned.
Good luck with the doc... but if you don't find a headache specialist versed in CH, you will be printing out a lot of material from here to show him/her and wasting a lot of time getting the care you need.

Your report card:




1. Verapamil    120 mg per day

A preventative started, as should, but late in coming.  The 120mg perhaps as a starting point, but hardly effective.  Verapamil should be adjustable and gradually tailored to what is needed (steps), which should have been made clear.


2(a). Referal to the guy in scarborough and an appointment with the local neuro. Nuero appointment monday. 

Good one.


2(b). Scarborough appointment ASAP (probably in the next couple weeks at the earliest)

Not so good one.


3. CT scan

A standard


4. Still no abortitive

Not so understandable being without a safety net here.  There is presently a short duration to your hits, but what if one lasts, say an hour? 
Presently you are on a steroid, which will end in a short time.  The verapamil will take 10 days or longer to work in, IF it's regulated properly.  When the steroid ends, it may unveil a new level of...abortive necessity, which should be foreseen as best to be prepared.

The neuro(s) may change things.  What appears is that you are basically without any abortive or preventive help when the steroid ends.  Placing bets it will "break" the cycle may be hopeful and optimistic, with consequences.



and you have school to think about


Grade:  green and growing

Quote:


IMPORTANT:  Take it as scripted by your doctor.

Any graduation of any dosage is for your doctor to know and tell you. 
It would help to know whether she's familiar with verapamil usage for clusters.



An icepack pressed to your affected side during a hit may be helpful to take a small edge off the pain, as well as giving you something to do during a hit.

It's heartbreaking to read about docs who lack skill in managing Cluster! Can only hope that you can search, on your own, for a HEADACHE specialist.
====
This approach to use of Verap is widely used. Problem is docs who are afraid of the high dosing which Cluster folks use, reinforcing need for a specialist.
--
Headache. 2004 Nov;44(10):1013-8.   


Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.
========

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.


2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

Quote:


This is a gradual stepping up of verap I mentioned earlier, glad this doc is making an attempt at prevention.  Some side effects are more pronounced when first taking a new medication, it takes time for your body to acclimate, give it time to work.  Time though, is not any luxury to play with while in cycle, it's good to have an abortive around.  Oxygen is still a good idea.

Melatonin is ok, too.  Again, when first taking it you may be drowsy in the morning.

Your hits are short-lived, but making an attempt to halt one in progress is not wasted time.

Quote:


The change in their timing is one way, a change in duration is also a possibility.  This may be an early start to clusters and change is something to be prepared for, or you can take it a step at a time as any changes come.



Don't forget about school.


Quote:

spelling      It's a new word, but becomes familiar passing cluster class.