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(Message started by: bzman1 on Oct 16th, 2007, 6:56pm)
Title: Hello; new member with new symptoms
Post by bzman1 on Oct 16th, 2007, 6:56pm
hello, everyone. i am new here and am very glad to have this site found.
I have headaches; several times a year; with typical cluster symptoms. it started 3 years ago, first attack with high blood pressure. i was hospitalized and diagnosed with sinus infection. later doctor told me about cluster headache.
As usually: eye pain; watering eye; running/stuffing nose;
dizzy;

Some symptoms differ my headache of many others:

-From the beginning of the attack, (usually, it’s left side) I feel numbness in the left side of lips and elevated (very fast) blood pressure. Numbness of the left side of the face stays long; I cannot stay and have to lie down. My normal blood pressure is 129/79 and during the attack – 190/100.
all my tests and labs are normal. non smoker; keep diet and work out on regular basis; jugging.
Any advise, comment?

Thank you

Boris
Title: Re: Hello; new member with new symptoms
Post by Melly_Mudflaps on Oct 16th, 2007, 9:17pm
Do the symptoms get any better after you lie down?
Title: Re: Hello; new member with new symptoms
Post by RichardN on Oct 16th, 2007, 9:34pm
Hi Boris and Welcome

 For most of us, the attack begins with pressure behind the eye and then spreads to the sinuses (often suspected by docs as sinus infection), and for me the high Kip attacks affect the nerves in the teeth on the CH side.  I don't recall any posts mentioning numbing of the lips as a first sign of attack.

 For most of us, it's not possible to lie down past a Kip 5, so that doesn't fit the normal CH profile.

 You definitely need a correct diagnosis from a ha specialist, and I'm sure someone will be along with some names of specialist in your area of Calif.

 Also, the real headache pros will likely have some suggestions re other ha types that may fit your symptoms.

 I personally have never checked my blood pressure during an attack, and though I wouldn't  be surprised it might increase to some degree, I think I would have noticed had it reached the level you mentioned . . . . will be interested in opinions of others on this.

 Hope it's not CH, but you definitely need to get correct diagnosis.

 Be Safe,    PFDANs

    Richard
Title: Re: Hello; new member with new symptoms
Post by bzman1 on Oct 16th, 2007, 10:13pm

on 10/16/07 at 21:17:44, Melly_Mudflaps wrote:
Do the symptoms get any better after you lie down?

No; it's not better; i just can't stay on my feet
Title: Re: Hello; new member with new symptoms
Post by bzman1 on Oct 16th, 2007, 10:21pm

on 10/16/07 at 21:34:27, RichardN wrote:
Hi Boris and Welcome

 For most of us, the attack begins with pressure behind the eye and then spreads to the sinuses (often suspected by docs as sinus infection), and for me the high Kip attacks affect the nerves in the teeth on the CH side.  I don't recall any posts mentioning numbing of the lips as a first sign of attack.

 For most of us, it's not possible to lie down past a Kip 5, so that doesn't fit the normal CH profile.

 You definitely need a correct diagnosis from a ha specialist, and I'm sure someone will be along with some names of specialist in your area of Calif.

 Also, the real headache pros will likely have some suggestions re other ha types that may fit your symptoms.

 I personally have never checked my blood pressure during an attack, and though I wouldn't  be surprised it might increase to some degree, I think I would have noticed had it reached the level you mentioned . . . . will be interested in opinions of others on this.

 Hope it's not CH, but you definitely need to get correct diagnosis.

 Be Safe,    PFDANs

    Richard

Thank you Richard;
i'm not familiar with some terminus, like 'Kip'; 'kip 5' and 'ha'.
i read that sometimes ch attacks may be accompanied with  elevated blood pressure as reaction to pain.
as for numbness of lips, it stays and turns into kind of numbness of the left side of face. it stays even after the attack but becomes less.

i really appreciate your comments
Title: Re: Hello; new member with new symptoms
Post by Melly_Mudflaps on Oct 16th, 2007, 10:22pm
Ok.  Well, first of all, sorry to hear of your pain!  Here is a list of sufferer recommended doctors listed by state: http://www.ouch-us.org/chgeneral/doctors.htm

Everything you've listed except the numbness is typical of a cluster attack.  I think that pretty much all of our blood pressure elevates when in the midst of a cycle or attack, I know mine is.  

Wish I could help you out more!
Title: Re: Hello; new member with new symptoms
Post by RichardN on Oct 16th, 2007, 10:45pm
"ha" is my shorthand for headache

 Ya know how the docs always ask, "from 0 to 10, 0 being pain free, how would you rate your pain?"  We have our own scale . . .see "the kip scale" (link on left) for OUR pain scale . . . which is what most of us use to describe (and note in journal) our attacks . . . and the scale is quite descriptive.

 It takes a little while to get used to our lingo . . . but don't be shy about asking for definitions re terms you might not understand.

 Richard
Title: Re: Hello; new member with new symptoms
Post by bzman1 on Oct 16th, 2007, 11:21pm

on 10/16/07 at 22:22:54, Melly_Mudflaps wrote:
Ok.  Well, first of all, sorry to hear of your pain!  Here is a list of sufferer recommended doctors listed by state: http://www.ouch-us.org/chgeneral/doctors.htm

Everything you've listed except the numbness is typical of a cluster attack.  I think that pretty much all of our blood pressure elevates when in the midst of a cycle or attack, I know mine is.  

Wish I could help you out more!


Thank you for response.
have you ever measured blood pressure?
what about numbness in the affected side of the face- lips; nostril, forehead?
thanks
Title: Re: Hello; new member with new symptoms
Post by DennisM1045 on Oct 17th, 2007, 7:22am
My bp regularly climbs during an attack to the (170-200)/(120-145) level.  I've never taken it during a Kip 9/10 but have during a few Kip 5/6 attacks and once right after a Kip 9.  I wanted to know what affect an attack had on my bp  numbers.

-Dennis-
Title: Re: Hello; new member with new symptoms
Post by Guiseppi on Oct 17th, 2007, 10:38am
Hey bzman welcome to the board. I know what you mean about the "can't stand up". I'm one of the minority who doesn't pace when I get hit hard. I lay in a semi fetal position, arms wrapped around my head while I do what my wife describes as "the bicycle pump" with my legs.

I strongly encourage you to get to a headache specialist, get a firm diagnosis and start on a long term treatment program. We haven't found a cure for these things but there are some great preventatives and abortives out there that allow us to maintain a decent quality of life. As others have written, nothing works for everybody, but oxygen has one heck of a success rate as an abortive, is cheap, and has almost no side effects.

So get thee to a neuro, get that firm diagnosis, and then get started on your long term treatment plan. And please let us know how it goes!

Guiseppi
Title: Re: Hello; new member with new symptoms
Post by bzman1 on Oct 17th, 2007, 11:18am
Thank you, Guiseppi;
I will follow your advise; before i found this site i didn't know what specialist i needed; Neuro!
You mentioned oxygen; is it in balons; how big? what's the type of this equipment and where can it be purchased.
IMPORTANT: have you heard about 'CELLFOOD'? actually it's about extra oxygen on regular basis for a proper cell nutrition.
I'd appreciate your opinion.
Thanks
Title: Re: Hello; new member with new symptoms
Post by bzman1 on Oct 17th, 2007, 11:25am

on 10/17/07 at 07:22:48, DennisM1045 wrote:
My bp regularly climbs during an attack to the (170-200)/(120-145) level.  I've never taken it during a Kip 9/10 but have during a few Kip 5/6 attacks and once right after a Kip 9.  I wanted to know what affect an attack had on my bp  numbers.

-Dennis-


thank you,  Dennis
my dr tald me that monitoring of bp is important; on some level, bp may cause extra pain and trouble; have you heard about it?
also, what do you know about 'cellfood' to cure ch?
thanks
Title: Re: Hello; new member with new symptoms
Post by vietvet2tours on Oct 17th, 2007, 12:00pm

on 10/17/07 at 11:25:13, bzman1 wrote:
thank you,  Dennis
my dr tald me that monitoring of bp is important; on some level, bp may cause extra pain and trouble; have you heard about it?
also, what do you know about 'cellfood' to cure ch?
thanks


      Yep nice defective work Guiseppi.We gots us a live one here.

                                             Potter
Title: Re: Hello; new member with new symptoms
Post by Linda_Howell on Oct 17th, 2007, 12:02pm

 I already answered these questions that you asked in your e-mail to me Boris, as well as sending you a list of Dr.s in the L.A. Area.  

  When we are getting hit with a CH, I believe the last thing we care about is putting on a cuff and taking our Blood Pressure.

Linda
Title: Re: Hello; new member with new symptoms
Post by Melly_Mudflaps on Oct 17th, 2007, 3:41pm

on 10/17/07 at 11:18:42, bzman1 wrote:
Thank you, Guiseppi;
I will follow your advise; before i found this site i didn't know what specialist i needed; Neuro!
You mentioned oxygen; is it in balons; how big? what's the type of this equipment and where can it be purchased.
IMPORTANT: have you heard about 'CELLFOOD'? actually it's about extra oxygen on regular basis for a proper cell nutrition.
I'd appreciate your opinion.
Thanks


Click on the oxygen info link to the left. <--

Sounds like you've been given great responses.  Time to study what you've already been told as well as doing some reading.
Title: Re: Hello; new member with new symptoms
Post by bzman1 on Oct 17th, 2007, 4:05pm

on 10/17/07 at 15:41:42, Melly_Mudflaps wrote:
Click on the oxygen info link to the left. <--

Sounds like you've been given great responses.  Time to study what you've already been told as well as doing some reading.


Yes; thanks to all of you, i have great responses. I do appreciate it; study and read. Sorry, i did not know about this site before.
PS i could not find your link.

Thanks
Title: Re: Hello; new member with new symptoms
Post by Melly_Mudflaps on Oct 17th, 2007, 5:22pm

on 10/17/07 at 16:05:46, bzman1 wrote:
Yes; thanks to all of you, i have great responses. I do appreciate it; study and read. Sorry, i did not know about this site before.
PS i could not find your link.

Thanks

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm


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