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        New Message Board Archives >> 2003 Posts >> Need to get it out - thanks- They Diagnosed Me
        
(Message started by: nancyann on Apr 28^th, 2003, 9:51am)

Title: Need to get it out - thanks- They Diagnosed Me
Post by nancyann on Apr 28^th, 2003, 9:51am

I am having these stroke seizure things. Still don't know what they are. Finally got approval on the MRA this morning will be going tomorrow am.

Had a real bad one just before, here at work. I can say that I have always been in tune with my body but now I think I am more than ever. My head pain is constant, it never goes away. Been that way since December.

This thning that happens to me seems to bring the pain to a new level where I seem to leave my senses, though I am totally aware of what is going on around me. The left side of my face looks as though it is melting off my skull and I tend to drool a little. I sometimes lose control of my vocals (sound kind of like someone with severe downs having a fit- don't know how else to describe it)it lasts anywhere from 2-5 minutes. This is happening five or six times a day. Every time is not as bad.

But after it happens. The pain is cut in half. kind of numbed out but still there. Yesterday it happened at the check out. I had my kids with me. Managed to get out to the car (thank God it was not a severe one) Got the kids into the car and then just cried. Decided I better not take the kids shopping by myself anymore.

We try to laugh about it. We really do. My husband jokes and says that maybe I'm morphing into a higher form of humanity. That my brain is expanding - that in the end I'll be this super smart human - the new species ( I guess you have to be there) :)

The embarassment just really sucks!!

BTW- ON a pain scale. Any man that has a 10 I would say that it is the closest he will ever come to experiencing the pain of labor. (Don't ever let a woman tell you that you don't know what it feels like)

Thanks for reading.

Title: Re: Need to get it out - thanks
Post by cathy on Apr 28^th, 2003, 9:58am

Sorry nancyann...but I have to disagree with you after giving birth 4 times and then watching my husband go through just 5 minutes of a clusterheadache then I would have to say that giving birth is like shelling peas in comparision....sorry just my opinion.

btw...I hope you get your problems sorted out, let us know how you get on.

Cathy :)

Title: Re: Need to get it out - thanks
Post by vig on Apr 28^th, 2003, 10:57am

I had a K-en on Saturday, and I thought to myself that this might be like giving birth!. of course, that means I would have hundreds of children by now!

Title: Re: Need to get it out - thanks
Post by vig on Apr 28^th, 2003, 10:58am

I had a K-ten on Saturday, and I thought to myself that this might be like giving birth!. of course, that means I would have hundreds of children by now!

Title: Re: Need to get it out - thanks
Post by Big_Dan on Apr 28^th, 2003, 11:02am

Unless I read it wrong, I believe that she's siding with the Clusterhead in that argument... which I would then have to agree with.....

-Big Dan

Title: Re: Need to get it out - thanks
Post by nancyann on Apr 28^th, 2003, 11:03am

Thanks I needed a chuckle!!

BTW- I had ten and a half hours of one minute apart contractions.

(Do you ever imagine that if you took a drill and put a hole in the side of your head it might release some of the pain?) :) :D ;D

Title: Re: Need to get it out - thanks
Post by Wendy the Brit on Apr 28^th, 2003, 4:25pm

nancyann

You said "Stroke/seizure things". I hope to God you are using this as a description and not a diagnosis. Strokes and seizures kill and are not words to use lightly.

Childbirth? Piece of piss compared with a Kip 10.

Wendy

Title: Re: Need to get it out - thanks
Post by vig on Apr 28^th, 2003, 4:42pm

I believe the drilling thing is called trepanation,
but I think those wackos do it to let spirits in and out, not the brain pain.

Title: Re: Need to get it out - thanks
Post by Wendy the Brit on Apr 28^th, 2003, 5:13pm

Vig

You are right. It is called trepanning. Prehistoric man used it as a cure for headaches.
Surprisingly it is not recommended now as we have moved on a little since then.

W

Title: Re: Need to get it out - thanks
Post by cathy on Apr 28^th, 2003, 5:54pm

btw....I had 50 minutes of slight contractions and 2 babies to show for it.......like I said shelling peas! ;D

Cathy :)

Title: Re: Need to get it out - thanks
Post by Anthem on Apr 28^th, 2003, 6:03pm

I was always curious about the "hole in the head thing", and read a little into it on the net () www.trepan.com. These people actually do it for "consciousness expansion" rather than anything like exorcising demons and such blather. One of them was actually a migraine sufferer who voluntarily underwent the surgery (yes, it is STILL done these days!) and says he hasn't had a migraine in 2 years since the trepanation. (I know what you are thinking--he just doesn't remember because his brain was damaged.. ;) ) but they actually are only putting a hole in the skull bone to relieve pressure for what they refer to as "brain-blood-volume". Interesting stuff to say the least!

Clark

Title: Re: Need to get it out - thanks
Post by don on Apr 28^th, 2003, 6:13pm

Quote:

is like shelling peas in comparision

Peas have shells?

Quote:

Piece of piss

How would you pick up a.........forget it.

Quote:

that means I would have hundreds of children

One hell of a child support payment

This is a really wierd thread.

Title: Re: Need to get it out - thanks
Post by cathy on Apr 28^th, 2003, 6:16pm

Twins....two peas in a pod...oh forget it...lol ;D

Yes peas do have shells....(I think) ???

Oh well whatever....!!!

Cathy :)

Title: Re: Need to get it out - thanks
Post by eyes_afire on Apr 28^th, 2003, 6:36pm

Hi Nancyann, I don't wish to alarm you, but I'm concerned about you.

Quote:

The left side of my face looks as though it is melting off my skull and I tend to drool a little. I sometimes lose control of my vocals (sound kind of like someone with severe downs having a fit- don't know how else to describe it)it lasts anywhere from 2-5 minutes. This is happening five or six times a day.

Make sure you get these symptoms checked out ASAP. Do not delay. You need to rule in or out the possibility of whether they are mini-strokes.

Read this:
http://www.neurologychannel.com/stroke/

Please keep us informed about how your appointment goes.

Title: Re: Need to get it out - thanks
Post by cootie on Apr 28^th, 2003, 9:44pm

Wow nancyann.......keep us posted what the docs find out. Am hopeing you can get it figured out......good luck to you ! A concern'd Pam

Title: Re: Need to get it out - thanks
Post by nancyann on Apr 29^th, 2003, 6:43pm

Thanks everyone! I had my MRA today and will have the results in the morning. Until then I guess I will just wait it out. The HA's were really the worst last night than they have ever been. I must have woken up four times then with this other thing happening It makes me feel as though I am suffocating. I hope to just find out soon.

I will let you know. :)

Title: Re: Need to get it out - thanks
Post by nancyann on Apr 30^th, 2003, 10:39am

:-/ :-/ Got the results of the MRA today. Don't really know how I feel. Great That its not an anurisim or something like that. Pretty rotten that they still don't know what's wrong with me. I spoke with the neuro's office today and they asked that I be patient. That there is still some stuff at the lab and that they are awaiting approval on the eeg. I go on the sixth.

I had another really bad night last night. I have to admit that I don't know how I drove the hour and a half to work this morning. I'm not really looking forward to the drive home. All I can think about is that my head hurts and I want it to go away. I guess I'm just on a pp (pity pot) today.

Title: Re: Need to get it out - thanks
Post by vig on Apr 30^th, 2003, 10:58am

no pity pot necessary,
It's a beautiful day because I slept a WHOLE night...
now it's my turn to pass the good spirit thingy to you.
smile, because someone is smiling for you.
-p

Title: Re: Need to get it out - thanks
Post by nancyann on Apr 30^th, 2003, 11:35am

Thank you for the smile, what do they say.

Laugh and the world laughs with you....

Title: Re: Need to get it out - thanks
Post by cathy on Apr 30^th, 2003, 12:15pm

Hi nancyann....everyone is entitled to be on their pity pot im sorry they still don't know whats wrong with you....I hope you get a diagnosis soon if for no other reason than to put your mind at rest. Good luck on the sixth.....like vig said someone is smiling for you and take it from me those smiles are worth their weight in gold!!!

Good luck on the 6th. Sending you pf vibes to help you through this.

Cathy :)

Title: Re: Need to get it out - thanks
Post by Bonniegirl on Apr 30^th, 2003, 12:37pm

Just wanted to let you know that I've got you in my prayers. You are overdue for some relief,girl. I'm sending pain-free vibes to your head! PFDAN's for us all!!! :-* :-* :-*-Bonniegirl

Title: Re: Need to get it out - thanks
Post by nancyann on May 2^nd, 2003, 1:45pm

:-/I received some blood results today by accident. The lab sent them to the wrong dr. When I questioned an abnormal reading on the antibody level I was told to have patience and wait until my Tuesday appointment that the Dr. would go over everything with me then.

I just want to know what is causing me to have this sh** to happen to me. At work, in the store, I have to pull over. Bad enough the damn HA wake me up. this damn Seizure stuff really stinks.

Sorry-- I just need to get it out.

Thanks

Title: Re: Need to get it out - thanks
Post by Tom on May 2^nd, 2003, 4:38pm

SUNCT syndrome:

SUNCT stands for "short-lasting, unilateral, neuralgiform headache attacks with conjunctival injection and tearing." Although these attacks often occur more than once a day and in the orbital region, they are longer lasting (15-120 seconds) than ISH, briefer than CPH (see above) and are accompanied by redness and watering of the ipsilateral eye and droop eyelid, as are CPH attacks. They have not, in contrast to IHS (see below) and CPH, been suppressed by indomethacin. The only drug reported to prevent their occurrence has been lamotrigine, an anti-epileptic drug which also can suppress trigeminal neuralgia. D'Andrea, et al. (1999) reported the case of a 66-year-old woman whose attacks (up to 15/day) were completely abolished by 150 mg of lamotrigine daily.

Title: Re: Need to get it out - thanks
Post by Karla on May 2^nd, 2003, 7:10pm

Nancy, so sorry you are going through this. I will be praying for a complete healing for you. I hope you get answers soon. Not knowing can make you crazy.

Title: Re: Need to get it out - thanks
Post by Drk^Angel on May 2^nd, 2003, 7:40pm

Tom... No offense... But how is your post related? I haven't read any reports linking seizures with SUNCT. The symptoms of SUNCT is most often listed as similar to that of all the other TACs, except for duration. The IHS has classified attacks lasting 10 - 120 secs to be the norm for SUNCT.

PFDAN.............................. Drk^Angel

Title: Re: Need to get it out - thanks
Post by nancyann on May 2^nd, 2003, 8:15pm

Thank you all. The hope that this is all some sort of HA is quite a relief. This is what I've got. Long history of migrane affecting the optical.

This "NEW"pain shows up in December. Stroke symptoms show up in Feb. I get put on all kind of meds in April
Topomax
Verapamil
a bunch of other stuff.
Episodes become 5-6 times a day and severe after 3 weeks of new meds.

All scans show up clean
When I went to the HA center they did a Bio feedback that they said showed a cluster pattern.
I was diagnosed as having cluster headache as well as complex migraine.

Just waiting on this seizure thing. Is it possible to suffer from three types of dibilitating ha?

Title: Re: Need to get it out - thanks
Post by Frank on May 2^nd, 2003, 8:53pm

on 05/02/03 at 20:15:35, nancyann wrote:

Just waiting on this seizure thing. Is it possible to suffer from three types of dibilitating ha?

I am most worried about the stroke-like symptoms. There are two main types of strokes... one causes bleeding in the brain (that would show on a MRI)... and the other due to blocked or narrowly constricted arteries or blood vessels (not likely to show on a MRI)... but other tests are available to detect that kind as well. Did they also MRI you're neck to see if the carotoid arteries look ok?

Title: Re: Need to get it out - thanks
Post by Tom on May 3^rd, 2003, 11:38am

Hi Drk^Angel,

the reason I mentioned SUNCT was that - from nancyann's description - I couldn't decide whether she was describing

- a short lasting extremely strong pain with kind of Horner's (SUNCT attack?)
- a focal seizure equivalent accompanied with pain
- or a short lasting stroke like symptom (TIA = Transient Ischemic Attack)

PFDAN Thomas

P.S. ISH would have ±the same symptoms and duration like SUNCT but without the Horner's.

Title: Re: Need to get it out - thanks
Post by Drk^Angel on May 3^rd, 2003, 2:58pm

Okay... Gotcha now...

Primary Stabbing Headache is similar to TACs (including SUNCT) as it seems to affect the first branch of the trigeminal nerve, but it doesn't seem to have any of the autonomic features of TACs and the attacks are normally shorter than any of the TACs (mean attack duration of under 3 seconds.)

PFDAN........................... Drk^Angel

Title: Re: Need to get it out - thanks
Post by nancyann on May 7^th, 2003, 9:27am

I received a diagnosis yesterday when I went back to the HA center. I am having cluster HA which they told me last time. However, I am also having seizures.

The correct diagnosis for what I am experiencing is as follows: It was spoken to me and not written down so please excuse my spelling:

Temporal Migrane with Partial Feboral Seizure.
They put me on Indocin 25mg 3x day for 3 days if it does not make pain go away double the dose and said that if all of my pain is not completely gone within 4-6 weeks they want me to go as an inpatient to this place in Michigan.

I am also on Topomax - at 75mg
Verapamil- 320mg
Vistaril 50mg
Reglan 10mg
Baby asparin
CO Q10-100mg
B2- 400mg

I also have to see a hemotologist about my blood results. Apparently my Cardiolipin AB (IGG) came back as positive. (My blood is thickening?)

Anyway, The thought of being away from my family for a long period of time in a hospital where I don't know anyone is not too appealing. (I live in Upstate NY)

PLEASE --- Pray that this is the medical cure for me.

I humble myself in asking .

Thaks :'( :'( :'( :'(

Title: Re: Need to get it out - thanks
Post by CathiP on May 7^th, 2003, 9:35am

Hey, Nancyann- That's what this gang does best! We've got prayers, vibes, juju, strong wishes- the whole enchilada. So, with that said, let me begin by sending you my best wishes for recovery- I really hope the Docs have found the way to control your seizures as well as your CH's, and that your blood will be fluid for many years to come.
Nancyann, take care, do what the docs say- and don't be afraid to question if something just doesn't seem right.
I wish you PF happy days.
Cathi ;)

Title: Re: Need to get it out - thanks- They Diagnosed Me
Post by nancyann on May 7^th, 2003, 9:45am

I :'( :'( as I write this. It is truly wonderful to feel such support. I have to ask one more thing from all of you.

Please pray for my family.

My beautiful 2 1/2 year old daughter is so scared to see her mom have these things.
My handsom 9 yr old son. (stepson) is afraid I'm going to be taken away. and my wonderful husband of almost a year who just doesn't seem to know what to do with himself to help out when this seizure happens and when he sees me in so much pain.

Please pray that they may have the strength to cope with what is happening in their lives.

Thank you again for all of your support.

This has been such an outlet for me.

Title: Re: Need to get it out - thanks- They Diagnosed Me
Post by cootie on May 7^th, 2003, 10:49am

Prayers and well wishes goin out to you BIG TIME.....stay strong........hopein for answers for you Pam

Title: Re: Need to get it out - thanks- They Diagnosed Me
Post by oringkid on May 7^th, 2003, 10:56am

There is strength in love and sounds like you gotta lotta love in your family and you have the bonus plan... us!

My thoughts and hopes are with you and your family!

Sherry

Title: Re: Need to get it out - thanks- They Diagnosed Me
Post by CathiP on May 7^th, 2003, 11:23am

Hey, nancyann-
Why don't you ask your husband to post on the supporters page? He will find so much strength & experience there, and it will help him cope as well. As for your children, well, they have kid-sized fears. I think you can help the fears ease by telling them what is going on in kid-sized words & expressions, and especially your stepson, encourage him to express as well- thru drawings, words......and get him involved in your support, too! Your daughter is young, all you can do is reassure her, give lots of love & comfort to her as well- but I'll bet you're already doing all of that- nothing like a close family that draws even closer in adversity! ;)
Take care, nancyann.
Cathi

Title: Re: Need to get it out - thanks- They Diagnosed Me
Post by OneEyeBlind on May 7^th, 2003, 11:33am

Stay strong and hang tough. Sounds like you have one awsome family !!!!!!!!!! Prayers coming for you and them both.

Title: Re: Need to get it out - thanks- They Diagnosed Me
Post by cathy on May 7^th, 2003, 2:42pm

Nancyann....

Prayers and vibes coming your way for YOU and your FAMILY !!!

Cathy

Title: Re: Need to get it out - thanks- They Diagnosed Me
Post by mikeinohio on May 7^th, 2003, 2:51pm

my wife thinks that my ch and child birth are equal but im giving birth through MY EYE SOCKET!!

Title: Re: Need to get it out - thanks- They Diagnosed Me
Post by vig on May 7^th, 2003, 2:54pm

she only gave birth a few times.
How many times have you "given birth"?
Hundreds?

Title: Re: Need to get it out - thanks- They Diagnosed Me
Post by oringkid on May 7^th, 2003, 3:07pm

I've given birth, I have CH.

Ch is worse.

Sherry

Title: Re: Need to get it out - thanks- They Diagnosed Me
Post by vig on May 7^th, 2003, 3:13pm

so much pain.

It doesn't much matter whose is worse when there is so much of it going around.

At least with child birth, something good comes from it.

Title: Re: Need to get it out - thanks- They Diagnosed Me
Post by oringkid on May 7^th, 2003, 3:21pm

Hey, at least one good thing has come from my CH... I got to meet all you great people!

Sherry

Title: Re: Need to get it out - thanks- They Diagnosed Me
Post by Mastifflvr28 on May 8^th, 2003, 12:30am

VIBES going up to you Nancy,
Good luck with everything,
take care
(hope the meds work!!)
Mast

Title: Re: Need to get it out - thanks- They Diagnosed Me
Post by Mark C on May 8^th, 2003, 9:35am

Diagnosis is good,
Now everyone can get to work fixing this thing. I am sorry for the shitstorm, poor health puts it all in perspective for me. I wish you and your family all the best.

Ramblings;

I ain't ever had a baby,~~But I did sleep at a Holiday Inn last night.~~ But I have see a couple born. Looked like trying to shit a watermelon to me.....piece of cake compared to CH. ;D

Correct me if I am wrong, but I think there have only been 25 cases of SUNCT diagnosed..."Twenty-five cases have been reported in the literature" (http://tinyurl.com/bae8) Article dated 2001. Kinda rare.

PFDAN's
Mark