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        New Message Board Archives >> 2003 Posts >> middlecook's post.....
        
(Message started by: Roxy on May 26^th, 2003, 5:46pm)

Title: middlecook's post.....
Post by Roxy on May 26^th, 2003, 5:46pm

This post was in one of the shroom threads, and I thought it needed to be here.

on 05/26/03 at 17:19:49, middlecook wrote:

Hi,

My spouse has had cluster headaches, migraines, whatever they are since giving birth to our first son. Since then they at times have been bad (i.e. an Imitrex shot does not touch it), but lately they have become unmanageable with my wife passing out, having the left side of her body go entirely numb, and chest pain. She has been in and out of the hospital over the last three weeks and when she is at home, she has not been able to be left alone due to passing out from the pain.

The doctors have done MRI's MRA's Cat-Scan, EKG's, EEG's just to name a few of the test. We started going to a new neurologist last week who prescribed, senate??, but the medicine has been discontinued. We are desperate and do not know where to turn except for God.

Any thoughts or advice would be appreciated.

Thanks

Title: Re: middlecook's post.....
Post by jonny on May 26^th, 2003, 6:01pm

Any thoughts is the question, am I wrong?

It aint CH, hell, even the dude dont know what his wife has.

Just my thoughts.

...................................jonny

Title: Re: middlecook's post.....
Post by Wendy the Brit on May 26^th, 2003, 6:28pm

Sorry Rox, just posted this over this side , then realised you had done it as well, so removed it!

Middlecook. The more I read it, the more I am sure you need a clear diagnosis, it doesn't appear to be classic migraine or CH but the onset after childbirth might suggest a migraine related condition as these are frequently hormone triggered in women. My migraines went into overdrive two days after my son was born and were entirely absent when I was pregnant. I wouldn't rely on the neurologist only, I would read, read, read , try and identify which beast it is, and be clued up when you go to the appointment.

W the B

Still no idea what Senate is btw

Title: Re: middlecook's post.....
Post by Jabeen on May 26^th, 2003, 6:38pm

My sister -who was totally asymptomatic prior to childbirth-developed MS symptoms after childbirth. She had terrible headaches, followed by partial blindenss, plus other stuff. She ended up in the hospital for heavy duty intravenous steroid treatments to shrink the inflamed optic nerve to get her sight back. After the first child and this whole ordeal, she was fine for 2-1/2 years until her son was born. The symptoms returned and were worse. She ended up back in the hospital, more steroids, spinal taps, etc. They are still doing tests to try and determine if it is MS or not-but as I said, she is asymptomatic now since the post partum episodes. Not sure if this has any relevance to this situation, but some of it sounds the same. ???

Title: Re: middlecook's post.....
Post by Wendy the Brit on May 26^th, 2003, 6:40pm

Come on folks! I'm a total novice in this and can't help, I know there are guys out there who have read almost everything there is to read. Any pointers/links/ideas we can give Middlecook and his poor wife??

W the B

Title: Re: middlecook's post.....
Post by Wendy the Brit on May 26^th, 2003, 6:42pm

Senate now identified as Sansert. Keep watching Middlecook, we'll try and help

Title: Re: middlecook's post.....
Post by middlecook on May 26^th, 2003, 6:46pm

Jabeen, thanks for the message it sounds kind of similar I recently had my second child, and everything has gotten much worse since he was born. I feel for your sister I have had every test in the book, including the spinal taps, I have been to 5 nurologists now and the best answers I get is it is probalby ch.

middlecook

Title: Re: middlecook's post.....
Post by jonny on May 26^th, 2003, 6:51pm

Probably?

Hell of a diagnosis, "Probably"

.................................jonny

Title: Re: middlecook's post.....
Post by Wendy the Brit on May 26^th, 2003, 6:59pm

I may be way off beam here but I thought the only numbness or paralysis consistent with CH was rare cases of facial problems, not body??????

Title: Re: middlecook's post.....
Post by middlecook on May 26^th, 2003, 7:07pm

I don't know I have only had the diagnosis for about a week the numbness starts at the top of my head and goes down my left side all the way to my foot. I can still move my arm/hand and fingers/toes they are just so numb that you could stab me with a pin and I wouldn't feel it. After about an hour of the numbness the horrible awful pain starts in my left temple. If you or anyone else have any ideas what it could be besides ch. I am open to suggestions, because the doctors sure don't seem to know.

Title: Re: middlecook's post.....
Post by Wendy the Brit on May 26^th, 2003, 7:20pm

Hi again

I have just had a dig around on the Internet and there are lots of reasons why there could be numbness on your left side. It may be worth you plugging it into a search engine as I did. One of the things that came up which was news to me is that in complex migraine, some people experience left sided numbness. This would also fit the pain in the temple which is a classic migraine symptom (with me it is a sign of migraine as it is in my eyeball when it is CH)
Another possible which came up several times was upper cervical problems. I hate to post this as we have a resident board crackpot who claims that upper cervical manipulation cures CH which it doesn't! However, in your case, which isn't appearing like Ch this may be an avenue worth thinking about.

W the B

Title: Re: middlecook's post.....
Post by catlind on May 26^th, 2003, 7:24pm

Middlecook,

I am sorry to hear of the nightmare you are going through. You may well have CH, but it doesn't sound to me like it that is the only thing you have if in fact at all.

Have you looked into seeing and endocrinologist to find out what is going on with your hormones? Sheehans syndrome has alot of similar symptoms to what you are describing and has onset after childbirth.

I know I'm not much help, but check into everything out there. It sounds more to me like some form of vasculitis, possibly along the lines of central nervous system vasculitis or even temporal arteritis. The loss of vision and paralysis is not at all consistent with CH norms. I'm not a doctor, and I can't diagnose you, but I would ask to look into other specialties such as rheumatology or endocrinology.

I hope you find something out soon. If it is CH, you've found the best place on the net to learn about it.

Take the cluster quiz on the button on the left and read read read.

Cat

Title: Re: middlecook's post.....
Post by middlecook on May 26^th, 2003, 7:35pm

Thanks for the suggestions I will definitly look into these things.

Title: Re: middlecook's post.....
Post by OneEyeBlind on May 26^th, 2003, 7:36pm

Sorry I can't even begin to guess what it might be ... what I can do though is send good vibes and prayers your way. I hope you find a diagnosis soon.

Title: Re: middlecook's post.....
Post by middlecook on May 26^th, 2003, 7:42pm

Thank you I can use a whole lot of prayers right now. I have 2 little ones, and it is not easy to care for them when your passing out from pain.

Title: Re: middlecook's post.....
Post by Donna on May 26^th, 2003, 8:17pm

middlecook:

Are you in a small town? Sometimes the docs aren't the most knowldegable. If it were me, I'd find a doc associated with a teaching hospital.

Frequent passing out goes beyond headaches such as migraine or ch.

Do you associate the passing out with severe pain or what?

Title: Re: middlecook's post.....
Post by middlecook on May 26^th, 2003, 8:38pm

Donna, I live outside of Detroit, We have some pretty good hospitals around here. Evidentally I just haven't hit on the doctor for me yet. Really it has only been horrible for the last 3 weeks now. Before that I was being treated for migraines and doing ok. I had pain almost every day, but I could handle it. This new pain though takes things to a new level. Outside of child birth I have never felt anything so excruciating before. As far as the passing out goes the only thing I can come up with is that it is from the pain, because it only happens when the pain is the absolute worst, and the doctors can't find any other reason for it.

Title: Re: middlecook's post.....
Post by eyes_afire on May 26^th, 2003, 9:53pm

Hi Middlecook. Numbness is not associated with CH. However, numbness is associated with migraines. Two of my co-workers have experienced this numbness on one side with severe migraines. The pain was bad enough to send one of them to the ER. Severe migraines can be extremely painful.

Do you have any of the other symptoms that are normally associated with CH?

--- Steve, one of many...

Title: Re: middlecook's post.....
Post by oringkid on May 26^th, 2003, 10:08pm

Hi there, doesn't sound much like CH to me. I know migraine can cause temporary paralysis in some cases, but, the passing out, I don't think I've heard of.

Wendy mentioned upper cervical problems... that might be something to look into.

Was this an easy birth? Were there any problems? I know that having a baby can sometimes knock some things out of alignment. Usually the lower spine. But who knows what else. Could be something has moved and is pressing against something else? Just guessing at stuff here, but it might be worth looking into.

Good luck and keep us informed.

Sherry