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New here and not sure what is wrong with me... (Read 1908 times)
LoveMyBoys
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New here and not sure what is wrong with me...
Oct 28th, 2009 at 9:12pm
 
I have been having pretty bad headaches for a while (not sure how long - just had a baby and everything runs together).  I was thinking they were caused by my epidural, but after doing some webmd checks (yeah, I know) I learned about cluster headaches.

I want to tell you guys what is going on and hopefully you can tell me if I have cluster headaches or if I'm just another case of Webmd induced paranoia.

Basically, mainly in the evenings, but sometimes during the day I will get periods of times where I have stabbing pain above my right eye.  It almost comes and goes like labor contractions, so the pain isn't constant.  My nose runs on the right side - I thought I was getting a cold, but no other symptoms have developed. 

The pain is worse if I cough or sneeze and if I strain to get up (holding one of the kids). 

The reason I question what is going on is because I read the stories on the home page and my pain isn't *that* bad.  It is very painful, but I don't need to beat my head on the floor or anything.  I just press on my head or on my eye.  My pain isn't as bad as labor contractions (which were flipping awful - hence the epi).

Anyway, I hope you guys can help me.

Thanks in advance!
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CC2004
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Re: New here and not sure what is wrong with me...
Reply #1 - Oct 29th, 2009 at 1:54am
 
Ive sent you a private message
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grace
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Re: New here and not sure what is wrong with me...
Reply #2 - Oct 29th, 2009 at 6:50am
 
The epidural space is relatively empty and hence the distance across it is very small. If the epidural needle is pushed a little too far it may pierce the membrane (the dura) which forms the spinal sac. Recall that at the level at which epidurals are performed, the spinal sac contains spinal nerves travelling towards the pelvis and legs via the sacrum and cerebro-spinal fluid CSF. If there is a hole in the dura the fluid can leak out into the epidural space. This fluid leak can cause a ‘low pressure’ headache. Although CSF is formed continually (there is about 150mls of CSF, but 600mls is formed each day, so it is continually being absorbed), with a hole in the dura, the loss will be greater than usual and the pressure around the brain and spinal cord will be lower than usual. It is this low pressure which causes the headache associated with a dural puncture. This also explains the fact that the headache is better when you are lying down (there is less ‘drag’ pulling the brain down and stimulating pain sensitive structures).

The headache is typically felt in the front or back of the head and neck and gets worse upon sitting or standing up. It usually develops within 18 hours of the epidural and lasts for 4-5 days. Uncommonly, it lasts longer. Resolution indicates that the body has created a seal over the puncture and the CSF is no longer leaking. The severity varies. A dural puncture headache may be mild and go away by itself. Not uncommonly, it is severe enough to significantly impair the mother’s ability to nurse and care for the baby.

.

Dural puncture headaches can be treated. Things which can help improve the headache include bed rest, drinking plenty of fluid, caffeine and simple analgesics, such as paracetamol. If these fail then the most effective treatment is a ‘blood patch’. This is a simple procedure which involves another epidural, with some of your own blood injected through the needle to ‘patch up’ the hole. This completely and permanently resolves the headache in over 80% of women within a few hours. In the remainder the headache is either not relieved, or returns some time later. In these cases a second blood patch will resolve 95% of headaches.

That being said, I don't know if this describes your headache or not.  My clusters are generally always at night...wake me up from sleep with the first indication being my left nasal passage being clogged.  My eye waters and it feels like someone is using an auger thru the roof of my mouth, left side temple, and left eye.  Mine generally last 40 - 45 minutes.  And unlike many on this site, I only have 1 hit at night.  I may have residual pain the next day plus clusterbrain as they've so aptly named it here, but I also don't have the kind of pain where I'm banging my head on the floor.  Don't get me wrong...this pain is horrific...but I can bear anything for 45 minutes.  Any longer and I might start banging!  (After induced labor I went for 27 1/2 hours hard labor before they did  an epidural...but at least there was an end in sight)  With clusters, it seems there is no end in sight...the beast is always right outside your door just waiting to pounce.  Anyway, I hope for your sake it's not CH...but if it is...this is the best place to be...so much support, compassion, and info. 
Best of luck to you!
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bejeeber
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Re: New here and not sure what is wrong with me...
Reply #3 - Oct 29th, 2009 at 1:45pm
 
LoveMyBoys wrote on Oct 28th, 2009 at 9:12pm:
my pain isn't *that* bad. 


I'm guessing that you probably don't have CH. And that is a very very good thing.  Smiley I suspect you'll be breathing a sigh of relief about it and moving on soon.  Smiley
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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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LoveMyBoys
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Re: New here and not sure what is wrong with me...
Reply #4 - Oct 29th, 2009 at 2:11pm
 
What I meant is that the pain isn't bad enough to beat my head into the floor.  It is bad enough to make me stop what I'm doing though until it goes away.
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Brew
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Re: New here and not sure what is wrong with me...
Reply #5 - Oct 29th, 2009 at 2:17pm
 
Please keep in mind that none of us here are doctors and thus not qualified to diagnose a medical condition. You really need to see a neurologist or headache specialist.
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Re: New here and not sure what is wrong with me...
Reply #6 - Oct 29th, 2009 at 2:23pm
 
Brew wrote on Oct 29th, 2009 at 2:17pm:
Please keep in mind that none of us here are doctors and thus not qualified to diagnose a medical condition. You really need to see a neurologist or headache specialist.

Yep what he said.

       Potter
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LoveMyBoys
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Re: New here and not sure what is wrong with me...
Reply #7 - Oct 29th, 2009 at 2:44pm
 
I have made a dr appt.  I was just asking for opinions (not a diagnosis) from people experience them.  My bad.  I guess I misunderstood what this forum is about.
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Brew
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Re: New here and not sure what is wrong with me...
Reply #8 - Oct 29th, 2009 at 3:21pm
 
LoveMyBoys wrote on Oct 29th, 2009 at 2:44pm:
I have made a dr appt.  I was just asking for opinions (not a diagnosis) from people experience them.  My bad.  I guess I misunderstood what this forum is about.

No, your understanding is perfect. We give out opinions like Carter gives out little liver pills. Stick around, but get in to see a doctor who has some experience with headaches. Last I heard, there are over 600 headache types. Most people around here experience one, two or three different kinds.
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bejeeber
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Re: New here and not sure what is wrong with me...
Reply #9 - Oct 29th, 2009 at 6:17pm
 
LoveMyBoys wrote on Oct 29th, 2009 at 2:44pm:
...I have made a dr appt.  I was just asking for opinions (not a diagnosis)....


What she said - which reminds me, I forgot to add the disclaimer to my guess above that I am not a medical professionalCool
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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Callico
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Re: New here and not sure what is wrong with me...
Reply #10 - Oct 30th, 2009 at 4:43pm
 
I don't know if you have CH or not.  There is no way to really diagnose over the internet, but there are a couple of guidelines you can use as an indicator.  Two you mentioned, Pain at the eye, and the runny nose on the right side can be indicative, but can also be something else.  That is why Brew said to see a Dr.

There is a cluster quiz on the left side of your screen, fourth one down right after cluster traits.  Both of those can be helpful in your search for what is going on.  NEITHER of them is good enough for a diagnosis, but can be used in pointing your Dr to a good Dx.  Then if you will look at "the Kip scale", next one down, you will find a means of describing your pain level.  It gives you some indicators of physical things that we tend to have happen at different level of a CH attack.  Again, not foolproof, as all pain is subjective and cannot be definitively described. 

Not all of us roll around on the floor banging our heads all the time when we get hit.  Especially when one is first being attacked by CH the first couple of cycles may be lighter than later on.  Other times the first hit will be a screamer like you alluded to.

Hope this helped and didn't confuse the issue worse.  PLEASE ask questions as you have them.  Sometimes we who have had these for years get into a pattern of talking about them that is offputting for those of you who are not accustomed to our way of communicating.  I guess you have to learn to speak CH to fully understand us sometimes. Cheesy

Jerry
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Layla328
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Re: New here and not sure what is wrong with me...
Reply #11 - Oct 31st, 2009 at 11:24pm
 
How long do they last?
I am definitely no doctor, but the fact that you say movement makes them worse, also the quality of pain you describe it sounds more like a migraine quality to the headaches.  But that does not mean they are migraines.  I am doubtful they are cluster headaches, but that does not mean they aren't. 
Does anything help them?  Tylenol?  Laying down?  Etc.
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« Last Edit: Oct 31st, 2009 at 11:25pm by Layla328 »  
 
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Bob Johnson
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Re: New here and not sure what is wrong with me...
Reply #12 - Nov 1st, 2009 at 10:25am
 
The difficulty so many face is that there are dozens of headache types--differing ever so slightly--yet affecting the type of treatment. Using just any doc increases the risk of failure in getting good treatment because the quality of medical education re. headache is limited. If you have the option, suggest you find a specialist.
=====

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 Login or Register On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Look for "Physician Finder" search box.  Call 1-800-643-5552; 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.




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« Last Edit: Nov 1st, 2009 at 10:26am by Bob Johnson »  

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