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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Another New Person
        
(Message started by: benlucky36 on Feb 4^th, 2004, 11:42pm)

Title: Another New Person
Post by benlucky36 on Feb 4^th, 2004, 11:42pm

First of all its nice to meet you all and see that I am not the only one with this problem. I was diagnosed on Friday with episodic ch. Something I had never heard of until then. I have had it for 7 years and did not know what it is. Was told sever sinus infection year after year. I don't have it nearly as bad as a lot of you from what I have been reading but never the less they tell me I have it.
Anyway on Friday evening around 7:00 when they always start. I felt the sever pressure behind my right eye like normal my right nostril closed up immediately the sweating began and it was on. I had about a Kip scale 8.5. But this time something different happened the right side face and my right arm began to tingle. My speech became slurred, and I could not swallow. Has anyone had this happen before? My girlfriend took me to the hospital and they checked my vitals my pulse was 42 and my blood pressure was 147/70. They decided to give me a c.t scan. I had an episode while getting the cat scan a Kip scale 4. Thought this is great this will show up on the c.t. scan and we will have it figured out. Guess what c.t. came back normal. After seeing a neurologist they diagnosed me with c.h. I am going in on Friday for a MRI but i am sure that will yield nothing. The started me on Verapamil yesterday. Its making me really sleepy and and making it hard for me to focus also making my legs feel week. Anybody experience this with that drug? Thanks for your time and thanks D.J for making this sight available.

Thanks
B.L. ;;D

Title: Re: Another New Person
Post by t_h_b on Feb 4^th, 2004, 11:48pm

on 02/04/04 at 23:42:50, benlucky36 wrote:

But this time something different happened the right side face and my right arm began to tingle. My speech became slurred, and I could not swallow. Has anyone had this happen before? My girlfriend took me to the hospital and they checked my vitals my pulse was 42 and my blood pressure was 147/70.

You're right, that doesn't sound like a normal cluster attack and you might consider seeing another neurologist. Maybe there are others here who have similar symptoms but those vital signs are a bit worrisome. Maybe you have something else going on--did you take some medication before they took your BP and pulse? Did they double-check the vitals using a manual cuff and a stethescope rather than a machine?

Glad you're okay now & that your CT was normal.

Title: Re: Another New Person
Post by benlucky36 on Feb 5^th, 2004, 12:15am

Thanks for the quick reply T H B. I didnt take any meds. And the vitals were checked on 2 diferent machines. But they didnt use a manual cuff. My blood presure runs a little high but my pulse is normaly around 85 or 90. I was going to wait till after the MRI before I think about going to another neurologist.

Thanks
B.L.

Title: Re: Another New Person
Post by paul_b on Feb 5^th, 2004, 12:17am

What did Nero say about arm tingle, slurred speech, difficulty swallowing? Definitly not usual.

Title: Re: Another New Person
Post by benlucky36 on Feb 5^th, 2004, 12:32am

He really didnt say much I just assumed that thats why he was sending me for the mri. To make sure that I wasnt having mini strokes. Please remember at this time I had never heard of cluster headaches. And he didnt do a very good job of explaining them to me. I was unsure of his opinion until i found this web site and did some reading and realize that this is what I was putting up with for the last 7 years.

Thanks
B.L.

As a mater of fact something didnt mention in this is that I live in a small town with a pretty small hospital. They transferd me to OSU in columbus. Wanted to send me by ambulance. But I had my girlfriend drive me and they only checked my vitals when I first got there never mentioned them again.

Title: Re: Another New Person
Post by Callico_Kid on Feb 5^th, 2004, 1:53am

Hi Ben,

Welcome to the madhouse.

Occasionally I will get slurred speech and some tingling and deadness in my right side when undergoing a severe attack, but I have never had my pulse rate drop so dramatically to my knowledge. That concerns me somewhat. You definately want to get that checked out. I did have one doc tell me once that on a rare occasion CH can mimic a stroke, but with no lasting effects.

As to the Verap, give it a little time to adjust. You may need to lower the dosage for a while and build up. your BP sounds as if it wont be a problem, but you need to be careful and monitor it until you get a med level stabilized and know what you can tolerate. Check out the button on oxygen info and tell your Dr. you want a script. It has no bad side effects, and for a great number of us it is very effective. It is also relatively inexpensive.

Keep us posted.

Jerry

Title: Re: Another New Person
Post by benlucky36 on Feb 5^th, 2004, 11:56pm

Thanks Jerry I really appreciate all the help. Im glad I finally found out what it is and can start to deal with it. The meds were a lot better to me today. Must just be an adjustment period. And i will check into the script god if anything can help with the pain that would be great. As far as the pulse Im wondering if I started to go into shock or something and thats why my pulse dropped so low? Just a guess and I didnt stay at holiday inn express last night. lol

Thanks
B.L.

Title: Re: Another New Person
Post by Cerberus on Feb 6^th, 2004, 12:45am

B.L.

Glad you found us, bumer ya hafta deal with our common enemy. I haven't experienced the tingling and such as you described, but, I wanted to stress to you the importance of getting to at least TRY oxygen as an abortive. If it doesn't work for you then it doesn't, but, many of us find pretty direct relief from it at 10-15 LPM (litres per minute) in about 15 to 20 minutes with a (non-rebreather mask as vital equipment) and it has little to no side effects as the pills and imitrex injections do.

Welcome and Good luck, stick around and keep us up to date on how you are doing.
Ramon

Title: Re: Another New Person
Post by Little Deb on Feb 6^th, 2004, 12:59am

Just want to say welcome.. This is a great place to be.

Little Deb
25 years episodic
Raleigh, NC ;;D

Title: Re: Another New Person
Post by Charlie on Feb 6^th, 2004, 1:53am

Welcome to the fold. Here you'll find a lot of good ideas and ways to help you deal with this horror. I'm posting two links. The first is to a technique that works for me:

http://www.netsync.net/users/charlies/

This one is to help others understand that this has nothing to do with what is thought of as "headache:"

"http://www.ouch-uk.org/ch/note_colleagues.cfm"

Good luck and keep in touch.

Charlie

Title: Re: Another New Person
Post by amen on Feb 6^th, 2004, 5:57pm

Welcome aboard!

Title: Re: Another New Person
Post by t_h_b on Feb 6^th, 2004, 6:45pm

on 02/05/04 at 00:32:37, benlucky36 wrote:

they only checked my vitals when I first got there never mentioned them again.

Well, with the VS you posted they should have had you on a continuous monitor or at least have been taking them every 15 minutes, at a minimum. No one has told you anything about your vital signs or the slurred speech? Those symptoms sound more like a Transient Ischemic Attack (TIA) which might be what you mean by "ministroke"?

Nothing that these damned things can do surprises me. Above all else they are tricky.

When I have a bad attack, it is difficult to speak but it is not physical but because I can't remember words or form sentences. I also have some numbness on my face and neck sometimes but that could be exacerbated by the intranasal lidocaine I use.

Title: Re: Another New Person
Post by benlucky36 on Feb 6^th, 2004, 8:58pm

Thanks for the input everyone. I just went today and had my mri done. I really did not like that, damn near freaked out. Maybe that will turn something up. Who knows.

You guys are a great resource for those of us that are new to this.

Thanks
B.L.

Title: Re: Another New Person
Post by Mark C on Feb 6^th, 2004, 9:12pm

Welcome to the board. The slurred speech and tingle are not normal signs of CH, but one thing we all have learned is the beast follows no set in stone pattern, however those symptoms have not happened to me in 27 years of CH so I would look a little deeper.

CT and MRI have been used to rule out other causes of possible HA. However there have been some studies using PET (http://www.falange.demon.co.uk/explain-petscan.htm) scans to "see" CH in action. Look here (http://www.clusterheadaches.org/library/hypothalamus/hypothalamic_activation.htm).

PFDAN's
Mark

Title: Re: Another New Person
Post by cootie on Feb 7^th, 2004, 12:29am

Holy crap......anouther Ohio'n !!!!! Hey benlucky36.......nice ta meet ya and welcome to the Ohio sidea hell Pam