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This Sucks I feel for the longtimers!!!!!

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This Sucks I feel for the longtimers!!!!!  
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Posted 6/28/2009 9:12 PM (GMT -7)
I've supposedly sufferred with migraines my whole life. A couple here a couple there the last real attack, about 6-7 was 2006, last month I had another.

Right eye starts to hurt, turns bloodshot, tears constantly, excruciating pain radiates on the side of my temple, behind my eye to the back of my head. No OTC helps, Hydrocodone will help enough to fall asleep, the key is if I fall asleep it will always go away!! :-)

A day later another, two days later another, now I'm getting mad mad . Called my neurologist that saw me in 2006 and he said well come on in. When I saw him he laughed and said "This is exactly what you told me in 2006 definitely migraines and put me on Relpax".

I took Relpax everyday for 9 days, that's not good!! Called him back and said "Dr. I'm popping a pill everyday!! I know I'm not supposed to take a pill everyday!!" His reply was "We're gonna have to try a preventive!" He put me on Topamax 25mg twice a day.

So, on Thursday, I woke up and took a pill and within 3hrs I had a headache, but not to migraine proportions more like a hangover. Head sore back of neck back of my head very aggravating, but I could still function, in theory. Took the pill at night expected it to get better couldn't wait to fall asleep and wake up Friday feeling good again.

Friday comes SAME FREAKING THING. Good news is I have no migraine just what would normally feel like the beginnings of one. The bad news is this back of my head and neck soreness is extrememly aggravating. I don't want to workout, I don't want to have sex, I don't want to do anything physical. it literally feels like I have a hangover, OTC's do nothing.

We are doing a CAT scan at my request because I just don't see how someone can have a couple of super bad headaches every couple of years and then have one every single day for no reason.

I have a new respect for all chronic pain sufferers this SUCKS!!! BADD!!!!!

Posted 6/29/2009 8:02 AM (GMT -7)
Yours fits the classic description of a cluster headache. These are not treated in the same way as migraine.

High flow oxygen often is found to help, and there are other treatments. Anyhow, do yourself a favor and explore cluster headaches.
Posted 6/29/2009 2:26 PM (GMT -7)
Jasil, I don't know if this going to help or not but here goes. I use to get headaches every once in a blue moon, then in Dec 2007 I started to get them every day. They did all the tests mri, cat scans, xrays to no avail. Nothing seemed to help in way of meds. It took almost 2 years but I finally saw a Dr. and spent an hour with him and he figured out what the others couldn't in 2 years. I have something called NDPH New Daily Persistent Headache. What it is he explained to me in simple terms is, a switch in your head turns on for no reason and the headaches start, they can last anywhere from a few weeks to years and then they stop just as sudden as they started. Maybe you can look into that as a cause. Hope this helps and good luck in finding relief.
Posted 6/29/2009 11:31 PM (GMT -7)
Jasil-
Hi and welcome. I am sorry you are having such a rough time!!! From what you described in your post it sounds to me like cluster headaches and not so much "migraines" Do a google search and see what you can learn about them and how they are usually treated.

(also...topamax takes a little while before you "see" results...AND taking a Relpax daily for 9 days would put you into rebound or what they call medication overuse headaches)

**from emedicinehealth.com**
Cluster Headache Symptoms
The pain of cluster headache is its defining and most dramatic feature. This pain comes on without warning (no forewarning symptoms such as the aura in classic migraine) and may begin as a burning sensation on the side of your nose or deep in your eye.

The pain peaks in just a few minutes. People describe the feeling as having an ice pick driven through your eye. They use words such as "excruciating," "explosive," and "deep." This stabbing eye pain carries with it a rapid electrical-shocklike element, which may last for a few seconds, and a deeper element that continues for a half-hour or longer. The pain almost always begins in your eye and always on 1 side of your face. Interestingly, for most people the pain stays on the same side of the face from cluster to cluster, while in a small minority the pain switches to the opposite side during the next cluster.

In addition to its one-sidedness, other characteristics separate cluster headaches from other headaches.
The headaches commonly come on just after you go to sleep.

Often the eye on your affected side will tear.

Your eyelid on the affected side will droop.

You will experience one-sided nasal stuffiness and runny nose.

Cluster headaches have seasonal variations. Most attacks occur in January and July, where the days are in turn the shortest and longest.
Sara-Migraine/Headache Forum Moderator

Battling headpain for 17 years.

DX: occipital neuralgia-radiofrequency nerve ablation every 6mo

 

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Posted 6/30/2009 11:47 AM (GMT -7)
Yes, this sounds like how my long-time migraines started out, sort of.  I'm certainly not a doctor, so of course ask your neuro about it, but have you ever seen a D.O.?  They are sort of like chiropractors, but they do a little bit more advanced stuff in manipulated your muscles and skeletal structure.  I've had some help from them when I get that tight neck and back-of-head pain.  I took Topamax for quite awhile, and it DID help, so take heart!  The only thing is, some of those preventatives take some time, like some WEEKS to really help and be effective.  I found that it wouldn't really start taking away the pain right when I popped one, not like the "abortives."  Good luck, and just know that I'm sending good vibes to you and all of us who are in the struggle :)
TATYANNA :)

Posted 7/3/2009 9:52 AM (GMT -7)
It does sound like cluster headaches but there are some discrepancies in your description. You mentioned the pain starting in your right eye which fits with a cluster diagnosis but you didn't mention whether your resulting headache is unilateral or bilateral. Nearly all cluster headache sufferers only experience pain on one side of the head.

The week-long cluster that you described is longer than a typical cluster but it's likely that those daily headaches were brought on from medication overuse. I understand feeling like you need something for your headaches every day but taking Relpax that often will almost always cause more headaches than it prevents. Also it's very unsafe. I don't mean to sound critical, I just want to make sure that you're doing what's best for you. If you don't already know you should not take triptan drugs (of which Relpax is one) more than 2 times a week--at the very most three times unless your neurologist explicitly tells you otherwise.

Do keep us posted and, if you get a chance read up on cluster headaches. They're very unique--significantly different than migraine in the symptoms and the treatment.

Feel better!
Ben
DX: NDPH, Recovered CRPS
RX: Lamictal, Concerta (Methylphenidate), Clonazepam, Wellbutrin XL, Namenda, Oxycontin, Oxycodone, Melatonin, Magnesium supplements.
PRN: Ketamine nasal spray, Celebrex, Migranal, Haloperidol, Zyprexa, Lodine, Zofran, Phenergan, Thorazine, DHE IM, Droperidol IM, Toradol, Reglan, Ambien CR, Provigil, and all triptans

Posted 7/4/2009 4:19 PM (GMT -7)
Thanks for all of the replies. I don't think I have clusters because the duration is so long the pain is unilateral just behind my right eye.

The hangover feeling has subsided 50%, but I still get the pain in the back of my head, neck, so surely some of the pain was rebound as someone mentioned.

I still don't understand how the onset can be so acute after 34 years of them being so sporadic, but maybe that is how it works? I still have not had a migraine while on Topamax and am grateful for that. 

Hopefully the dull headache, soreness, and tingling will go away and I'll feel like working out etc again.

Kudos to you guys because I still feel like I'm a lucky one compared to what many seem to go through.

Happy 4th!! wink

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