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1st cluster after 20 years of migrines! (Read 1825 times)
JayDubb
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1st cluster after 20 years of migrines!
Feb 15th, 2015 at 2:36pm
 
Hi. I'm sorry if my writing ability is a little sub-par during this message, but I am still experiencing the after effects of my first cluster headache. About two or three hours ago, I experienced the most excruciating pain in my life. The pain was so severe that if I were physically able to grab my phone, I would have called 911 and informed them that I was dying of either a gunshot, aneurysm or stroke.

This attack came on the heals of experiencing 20 years worth of very severe migraines, which my doctor and I had just recently found a medication to get under control within the past two years. Before discovering that Cymbalta greatly redusced their frequency and intensity, I was getting about a half dozen severe migraines a month. I've only had four since being placed on tis great drug, Nonetheless, I hope y'all understand that I am no rookie when it comes to headache pain, but instead, a seasoned veteran.

I've studied migraines so extensively over the years that as soon as the pain eased enough for me to at least be able to move, I was able to determine that this pain was likely either an ice pick headache or a cluster headache. Since I am still in some significant (but no longer debilitating) pain more than two hours after onset, I think it's safe to r/o an ice pick headache, which should be seconds or minutes long, not hours.

I've done some quick research on cluster headaches in the past hour to verify my understanding of the disease. This research was very brief. It was just 10 minutes or so at web mb., the mayo clinic's website, wikipedia and this website. I'd love to read more, but I've found that tiling my head downwards, even slightly, like looking at a computer monitor, causes my pain to increase significantly (btw typing does not cause the same increase as I'm able to type without looking at the screen or keyboard, thus why I've chosen to write a message on here right now. I can't stop thinking about this, but I have no way to attain any new information for the time being, so writing about it is all I really have to do right now).  Undecided

While I know a trip to my M.D. will be necessary for a formal diagnosis, my symptoms align exactly with that of a cluster headache. I must say that probably having a medical condition that would exclude having a brain tumor, gunshot wound or aneurysm is somewhat stress relieving for me, but knowing that there's a decent chance this nonsense will be a regular occurrence in my life is utterly frightening.  It's truly a pain that is absolutely second to no other. Yesterday, I would have ranked a bad migraine at 9.5 on a scale of one to ten for pain experienced. However, right now, I'm not sure if a severe migraine would even score a five in comparison to tonight's pain.

I am also convinced that this attack was not some kind of modified version of a migraine, although there was some overlap, specifically the location of the pain, ringing in my ears, and some pretty significant nausea. However, the pain was completely different from that of a migraine (stabbing with a hot poker v. having your head put into a vice). Additionally, the lights in the room I've been sitting in during the past two hours are still turned on, which would be unthinkable during a migraine. I experienced no aura, nor did I fully lose vision in one eye beforehand (at least one of these two visual problems have occurred before every migraine I've had). Also, the onset of pain was unbelievably rapid, and not at all gradual like a migraine. (I was vacuuming the floor and bent down to move a penny out of the way. I was feeling perfectly fine while standing, but I didn't made it back to an upright position after bending over. Instead, I wound up on the floor withering in excruciating pain (my initial thought is that I had just been shot in the head...it came on that quickly and powerfully).

When I figured out there was no hole in my head, my thinking immediately turned to an aneurysm, and then when I noticed my eyelid and lip were both numb and drooping, the possibility of a stroke entered the realm of possibilities.

I decided to attempt to alleviate my pain by employing the decent sized collection of medications I have to treat my migraines. I can say that the pain has significantly decreased since taking medications, but I have no way of telling whether or not the medications contributed to this, as I do not know this condition's natural cycle. What I've read seems to indicate it should be going away right now on its own anyways. Since this is the case, I'm going to list out the medications/dosages of what I took tonight. I welcome any input on the effectiveness of these medications and any other suggestions on how to quickly address the pain should I get another one of these.

100 mg Sumatriptan (triptan for migraine relief, normal dosage)
800 mg Ibuprofen (analgesic/fever reducer, max dosage)
550 mg Acetaminophen (analgesic/fever reducer, high dosage)
5 mg Hydrocodone (medium strength codeine-based analgesic/antitussive, minimum dosage)
.25 mg Xanax (anti-anxiety/anti-convulsant, minimum dosage)
50 mg Biphenhydramine (antihistamine, recommended adult dosage)

I also take four prescriptions on a daily basis:
50 mg of Ambien (sleeping pill), 60 mg of Cymbalta (migraine prevention, off label), 10 mg of Loratadine (allergy control), and 500 mg of chlorothiazide (blood pressure medication...note: I do not regularly have high b.p., but it has been known to spike extremely high during migraine attacks, so my doctor prescribes this medication as a precaution.)

I also want to note that during a migraine, I would almost always choose to slam my system with caffeine, yet I chose to avoid it tonight. I'm not sure if it was just the shock and the pain, or if it was a symptom related to the cause of the headache, but I was extremely uneasy, nervous, and restless (unable to stay still). I worried the caffeine would exacerbate this feeling, so instead, I chose to go the opposite way with a very low dose of Xanax.

I also want to make note of several other abnormalities I've been noticing as of late, along with some other facts and thoughts about tonight....and then I'll wrap this up. I'm not sure if any of this is pertinent information, but it very well could be. I welcome your thoughts.

- My left eye did happen to turn pink and get watery during the early moments of this, as outlined in the info I've read tonight. My eyelid also went limp and there's swelling forming around my eye socket that is significant enough to make it appear that I have just been punched in the eye.

- Speaking of the eye, it's dawned upon me that in the past month or so, I had woken up multiple times and noticed that my eyes were completely bloodshot (deep red) without any reason for them to be. This was always quickly corrected with eye-drops, so I never thought anything of it. Could this be related to what happened tonight?

-Additionally, in the past six months, I have started to experience a decrease in eyesight for the first time in my life. I now struggle with fine print that used to be no problem on my eyes. I wrote this off as simple aging, and I still do, but is there some chance that this can be related to the headache?

- It's also dawned upon me that I have been unusually absent minded for the past couple of days. I have misplaced more items during that time than I had in the past six months. I've also been (very uncharacteristically) rather irritable as of late and without anything unusual to cause me to be that way. Both of these changes in personality are now starting to really concern me.

-I work nights and I had just gotten home about 30 minutes before this occurred. I carpool with a coworker and he was late finishing up last night, so I waited for him out in my car. While waiting, I had fallen completely asleep, which is something extremely unusual for me to do, as I've never been able to fall asleep while sitting upright. While driving him home, I remember telling him how that little nap had made me feel "just about as awake as I've ever been. I feel like IV''s are pumping Red Bull directly into my arms." Once I got home, I was extremely energetic and started to clean my condo, which is something I never do at 6:30 AM. 20 minutes later, I was hit by this attack.  In retrospect, this behavior seems very questionable, and I'd really have to think that there's some kind of connection to the headache. Have any of you experienced something like this before getting a cluster headache?

- I have very sensitive allergies.  While I have not ingested anything out of the ordinary in recent times, the swelling in my face is very similar to an allergenic reaction I once had to a medication I had just been prescribed. Although, that reaction was not accompanied by excruciating pain, of course. Yet, the swelling did bear a striking resemblance to tonight.

- On tip of that, I had watery eyes, itching in my throat and a stuffy nose during the early parts of this headache. While at least two of the three are common symptoms of a cluster headache, all three are common symptoms of an allergic reaction. Has there any research into whether a cluster headache is simply a severe allergic reaction?

- I currently have a very strong instinctive feeling to use the palms of my hands to apply pressure to the front of my forehead, which was an even stronger feeling a couple of hours ago. However, doing this greatly increases the pain and I pull my hands away immediately.

- An interesting thing about the pain caused by that brief pressure is that the best way I could describe it would be to say that it is VERY similar to the pain caused by the gout (anyone who's had a case of gout would absolutely know how applying pressure made me feel. If you've never had gout, while it would be very difficult for me to describe the pain, I can say that it is extremely intense, it causes swelling, its onset is rapid, and the pain is greatly increased by pressure, just like the secondary pain I felt whenever I applied pressure to my forehead. Does anyone know if there has there been any research into whether the two diseases are somehow related?

With all that said, I'm going to finish this up right now. It's no well more than three hours after the initial onset, yet the pain hasn't gone away, but instead it is really starting to intensify again. It's also spreading all the way from essentially a single point above my left eye to the entire portion of my head located between and above my left ear and my left eye. On the other hand, I do feel tired for the first time since this happened, so I am going to try to get some sleep and hopefully sleep this off...God willing.

Thanks for reading this. Any advice or suggestions are more than welcome. This whole thing is totally freaking me out.  Sad
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Bob Johnson
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Re: 1st cluster after 20 years of migrines!
Reply #1 - Feb 15th, 2015 at 3:09pm
 
It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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First, it's essential that you be working with a doc who is either a headache specialist or who is very skilled re. complex headache disorders.

While it's uncommon to have both migraine and cluster, it does occus and treatment is more complex than if you have either disorder alone--hence need for real skill.

It's imperative that you have solid diagnosis before you start talking about treatment.
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

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

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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.
=====================================================================
WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
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Your list of medications suggests that you have Cluster for pain meds do not work for us. The sumatriptan is an effective abortive for both disorders but, clearly, you need additional medical support.

I'm reading into your comments about your present doc that he doesn't have experience with such a complex picture. So, encourage you to discuess you need to seek a more broadly trained doc. (Not the time to protect his ego <bg>.

While you are taking these steps, read material here and explore these sites:


These sites which are worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
------

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Search under "cluster headache"
-------
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
====================
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
  A new site (ca. 2015) with extensive material. Explore the site map and then patiently
  the broad range of materials.

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Bob Johnson
 
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Batch
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Re: 1st cluster after 20 years of migrines!
Reply #2 - Feb 15th, 2015 at 3:10pm
 
Hey JayDubb,

Welcome to CH.com.  You've come to the right place.  We know what you're going through and the good news is it doesn't need to be that way.

You're correct, your first course of action is to see a headache specialist experienced in treating cluster headache.  If you'll tell us where you live, someone here at CH.com will be able to give you a candidate neurologist with the right qualifications.

This is an important first step as a good neurological workup will include an MRI that should rule out the far more serious conditions.  Do this as soon as possible this coming week.

In looking over the medications you're presently taking, my first though is polypharmacy...  In other words, you're taking so many medications there's no way of knowing if any are effective or worse, causing more problems.

We're not doctors here at CH.com but we can bring a collective first hand knowledge of what works and what doesn't when it comes to treating cluster headache.

In looking over the list of medications you're taking only one, sumatriptan succinate, (imitrex), falls into the effective category with respect to cluster headache if that's actually one of your medical problems...  the rest are likely causing problems for you or causing unwanted drug interactions.

In short, you need sound professional medical help and it appears, given the laundry list of medications you're taking, you need go to a different physician.

I'm sure you'll have other old hands from here at CH.com chime in with similar comments.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Feb 15th, 2015 at 3:13pm by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Hoppy
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Re: 1st cluster after 20 years of migrines!
Reply #3 - Feb 15th, 2015 at 5:12pm
 
Hi JayDubb,
Firstly as Batch said, the only medication your taking
that will abort a CH is the Sumatriptan, all the others
are more than likely giving you rebound headaches,
and if the Triptans are in pill form they take too long
to kick in, what you need are the auto injectors that
will abort a CH within 5-7mins. I noticed you said, you
were off too bed to try an sleep the headache off, with  CH's this is virtually impossible too do.

Hoppy.
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« Last Edit: Feb 15th, 2015 at 5:17pm by Hoppy »  
 
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