I managed to get an appointment with a headache clinic near Boston in 15 days(!).
This is a headache "clinic" and from what I understand, my parents and I will be working with two or three doctors who specialize in headaches. My neurologist told me that these headache people have a little more leeway in experimental treatments and things to try if what the people with whom I'm working now isn't working, which it doesn't seem it is.

I started a Prednisone taper a week ago at 40 MG, and it hasn't really done anything to help.

What should I expect from appointment one if anyone has been to a headache clinic?

They may be able to assist finding a nearby hotel.


Log your headaches (call them for a headache diary)

They may have a website to complete questionnaires.

Have pertinent records sent from your current physician before you arrive. (they should send you a form for this, they may need to correspond)

No perfumes or colognes.

Go early to fill out papers.

Comprehensive list of medications prescribed, if more than one doctor.

Talk and listen

No running with scissors.



Good luck      :)   

You could hopefully expect for somebody who is knowledgeable enough about CH's, unlike the doctor who unfortunately prescribed you such a low ineffective dosage of Prednisone.

Also, before going in you should definitely educate yourself so you can speak to the doctors intelligently.



Good luck ;)

-Gregg in Las Vegas

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...I will be working with two or three doctors who specialize in headaches. What should I expect...

Questions, examinations, conference, decision and meds to follow.

Write down a list of what questions you want to ask. Then during the appointment tick them off and even take notes. The last thing you want to do is to remember something you wanted to ask 5 minutes after the appointment is over.

Kevin_M wrote on Oct 9^th, 2012 at 9:01pm:

Quote: ...I will be working with two or three doctors who specialize in headaches. What should I expect... Questions, examinations, conference, decision and meds to follow.

Is this usually over the course of multiple appointments? I figure as much, but I have no experience with this type of doctor/neurology practice.
As far as exams, all of my scans and blood labs are being sent to these guys, so unless they have something else they want to try diagnositcally, that should be able to be skipped, correct?

Are there certain things of which I should keep notes that I should refuse to do because they would be a waste of time? (IE Biofeedback, which this clinic says they use for treatment of child headaches) or should I just give it a try if they ask?
I mean, I don't want to waste my time, but I also don't want to piss them off by giving off a persona that I know more than they do.

things are also starting to look up! I'm headed into week six (:/) but I managed to get an hour more of sleep last night than usual.

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Is this usually over the course of multiple appointments?

You're reaching back nine years into my memory of a first appointment in a headache clinic, but it was much more professional than my first neuro visit in the '90s.

If you make sure they've had time to go over all that's been done by providing it beforehand, even family history, it will save time if they do their homework. 

It could be meds assigned at a follow-up, they will see you first and come to a decision.




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all of my scans and blood labs are being sent to these guys, so unless they have something else they want to try Biofeedback   for treatment of child headaches

Could be they might. 

Headache diaries they have are usually general ones, covering migraines and other, not just for clusters.  I skipped the "possible triggers" part because for ten years prior I had no clue, didn't seem to be a factor.  Episodes came out of nowhere, whenever.  I thought about it and checked it out, but nothing made sense.  I mean, what would they want me list -- I fell asleep again, damn.  Or, it was a nice day, a rainy day, I had a piece of Mom's apple pie, I didn't eat, I worked, I didn't work...everyday was different.

Just remember there are lot of variations, I was probably easy, no prior history of ailments and already diagnosed, but by a previous neuro not up on treatment.  Kind of like your first cluster dx doc. 


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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.

hmm...  break the cycle and prevent future ones.  Not quite, ey?



The short duration of your hits are unusual, might mean something, might not.  If oxygen and Immitrex help, it's a big clue, but let them decide for now.


Looking back at your first post here:


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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.

You gave a little more medical history also they will have to examine, like a previous migraine diagnosis and other, but this is different:


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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 don't know if they've changed, as Bob Johnson mentioned:


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Be patient if the doc can't give a firm Dx. Not unusual for symptoms to wander, be unclear, when moving between headache types and/or developing a Cluster pattern.

Other stuff you wrote:


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4 AM - woke up from a dead sleep in a kip 4 or 5, quickly ratched up to a kip 8 9:06 AM - Kip 10, easily the worst pain I have ever had from anything ever. 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 ...

Next day:


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welp, today was crappy.

They will need to dx for themselves.  If clusters (seems to be), put your two cents in for a safe but aggressive war plan.  Present and future imperative stressed: You're missing school as a junior and supposed to be having fun. 

So okay, getter' done.   Hoping for best.   :)

Make a log. 
Every hit... time, intensity (1-10), duration, how you treated it, if it work, etc.
Every med or other treatment you try... time, dosage. 

Print that and give them a copy at your appointments. 

Don't leave without a prescription for Oxygen!!!!!  Preferably at least 25 lpm, but if they prescribe less that is OK.  You can buy your own regulator and order an O2ptimask from the ch.com store on the left.  (It is far superior to the little ones the med companies want to give you)

Jerry

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The short duration of your hits are unusual, might mean something, might not.  They will need to dx for themselves.  If clusters (seems to be),

Another aspect why this appointment is important may be related to why I posted the above: The 8 - 18 minute duration of your hits.  Just a thought, but there is a very close relating form of CH that is successfully treated with:


Indomethacin

Chronic paroxysmal hemicrania is subgroup of the chronic form of cluster headache, is highly responsive to indomethacin.  It is characterized by 15 or more focal attacks of head pain daily, each lasting for about 15 minutes.  Mathew (1981) identified a transitional group of patients with the chronic form of cluster headache, who had attacks of headache of sudden onset, lasting 20 minutes, and occurring five times daily; four such patients were treated with indomethacin at 150 mg daily, with a crossover period to placebo, and clearly benefited.  Similarly, Kudrow et al (1987) described six indomethacin-responsive patients with a cyclic form of paroxysmal hemicrania.

Callico wrote on Oct 12^th, 2012 at 10:19pm:

Don't leave without a prescription for Oxygen!!!!!  Preferably at least 25 lpm, but if they prescribe less that is OK.  You can buy your own regulator and order an O2ptimask from the ch.com store on the left.  (It is far superior to the little ones the med companies want to give you) Jerry

Already have a script for O2 :) 15 lpm through NRB mask. I'm planning on ordering an Optimask soon.

Re: Indocin. I was put on this at 25 MG for five days as a why not sort of thing. It didn't work for me and the perscribing doctor felt that going any higher was unneeded.

12 days :D I can make it.

My hits have been getting shorter. A lot shorter with 02. Instead of 5-20 minutes, the 02 has been taking them out in 1-3 minutes most of the time. The pain is roughly the same hit to hit and I feel washed out after all of them, but the time is shorter.

We got back to the homestead last night around nine. The appointment took five hours total, after two meetings with two different doctors and one with a nurse.
So I ended up with a perscription for nasal DHE and nasal Lidocane in the event that the DHE doesn't work.
The phsycologist got to see one of my attacks and confirmed that it looked just like every other cluster pateint she's seen.

Keep in touch with them on how you are doing for feedback and maybe adjustments or changes, but good luck and better days ahead.


This would have been a good thread for those who may have had the same questions about doc appointments.  They would look under the Cluster Specific board though.   Put 'er there next time so it can be found, k eldorko?   ;)


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Cluster Headache Specific This board is specifically for cluster headache related questions and support...

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Headache Clinic Appointment, what to expect?

A nice fit. 


 




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So I ended up with a perscription for nasal DHE and nasal Lidocane in the event that the DHE doesn't work. The phsycologist got to see one of my attacks and confirmed that it looked just like every other cluster pateint she's seen.

And quit missing school!      :)

I went to a ha clinic and it gave me my life back!  I saw a neurologist there.  He confirmed that I had tried everything possible and every medicine possible for ch. Over 35 different meds.  However he noted that the medicine topamax I had tried at 200mg.  He had me try it at 600mg.  It did nothing for my ch.  So he then had me try as a last resort a narcotic pain patch called fentenyl and it has kept the ch at bay for 12 years.  I have never needed to change my doseage either.  Now this is an opiate and I wouldn't recomend it unless it was a very last resort because it causes dependency issues.  I have to mention I had tried oxycodone and methadone to no avail.  They did nothing for me but make me sick and out of it.  I have been blessed that with the fentanyl I have never felt high or out of it but I attribute that to all the narcotics my dr had me try before the fentanyl my body was used to haveing it in its system.  Most people will get sick on this medicine so be warned. 

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I managed to get an appointment with a headache clinic

Which one?

Want to cut to the chase? Make an appointment with Doctor Morrell at MGH Charlestown.