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        New Message Board Archives >> 2002 Posts >> Questions...one more time, then I swear Ill lurk..
        
(Message started by: pjeje on Sep 14^th, 2002, 11:49am)

Title: Questions...one more time, then I swear Ill lurk..
Post by pjeje on Sep 14^th, 2002, 11:49am

Hi all..

I dont know how long to make the posts, and dont want to write a book.. trying to keep different subjects in order too...

I finally understand prednizone and Imitrex...I am keeping full cycle diaries..and another for ideas while in a cycle..what works for one may work for another is a basic sentiment around here I am finding.

The red eye started August 30, headaches started Sep 1, all diagnosis in, with not one since early on Sept 8.
Red eye dissapating this past week, finally the white of my eye was showing, only to begin being a bit red last night. Stuffiness just about the same. Pings and pangs with dull painish feelings even better too...Thank god...but

I know DRK^Angel stated the last couple days, something along the lines dont wait, or expect. I feel that too, but its hard not too just being in the first cycle, deathly afraid of what may come.

Could I be out of the cycle, or can days go by in a cycle with no headaches, then they appear? Am I lucky, I just had a very short cycle? Does red eye begin first? Do pings and pangs that were not apparent, begin again and that may be an indication that a headache is on its way?

Do any of you seem to be just overly irritated more so then when not in cycle?

Imitrix is an aborttive. What if it doesnt work? My Dr said it had to be used three times, but "only" twice a day. I have an appt. with him anyway in two weeks, but gave an indication that there is really nothing until we see if imitrex works for me. Meaning I have to go through that pain? By no means however, I am not assuming it will not work...Im just trying to figure this all out, and I have a feeling its kind of a wait and see thing now, until I find out alot of these answers on my own.

Thanks for your time, I know I have other questions, they just seem to appear at the oddest moments.

A hug and a smileforever
Pat

Quote:

Laughter is a form of internal jogging. It moves your external organs around. It enhances respiration. It is its own igniter of great expectations.

Title: Re: Questions...one more time, then I swear Ill lu
Post by 2late on Sep 14^th, 2002, 12:11pm

one thing about immetrex, i've tried pills & nasal spray, it did absolutley nothing, the injections work unbelievable 5 min. & it's usually gone. don't give up on trex until you try the injections!!! ...............2late

Title: Re: Questions...one more time, then I swear Ill lu
Post by NancyMcFree on Sep 14^th, 2002, 12:17pm

I too tried the nasal spray .... took way too long to kick in. I never tried the pills. The injections work wonders .... try it, you'll love it.

I too was treated for pink eye about a month before the beast came knocking every time I laid down .... now I have to wonder, was it just the start of the cycle. After the pink eye, I was treated for a sinus infection ... then a few weeks later the beast came knocking every time I closed my eyes ......when I showed up at the doctors office in tears after taking a nap, she figured out what was wrong.

Take care and try the shots ... it's not even really like a shot cause it comes in a epi-pen dispenser ... you never see the needle !!!!

Title: Re: Questions...one more time, then I swear Ill lu
Post by ChristineL on Sep 14^th, 2002, 12:38pm

Some of us have found that we don't need the whole dose of the Imitrex. I find that 1-2 ml's work for me in 5-10 minutes. Try the Imitrex tip on the left - it will give you more doses out of the 2 you will get. I split mine into Insulin syringes of 1 ml each. Gives me 12 doses out of 2. Also when you go for a refill just get the two doses - it is less expensive than buying the whole kit again.

Chris L

Title: Re: Questions...one more time, then I swear Ill lu
Post by domm on Sep 14^th, 2002, 12:45pm

Don't be afraid to ask questions. But also, spend alot of time reading, both from the site's vast information base, The OUCH site's stuff, and past posts. The seach button up top can take wildcard searchs (like - *imitrex) and it will pull past posts on the subject.
From reading through the posts, each persons cycle if different from anothers. The commonality is the periodic attacks while sleeping and while awake.
I've never had pink eye, although my kids all had it at one time or another. I've had sinus infections and hayfever all my life. CHs are something totally different.
I've recently started Verapamil as a preventative and I use Oxygen and Imitrex as an abortive. I use the Imitrex pills, and while they are slower than the shots, my insurance co doesn't object to unlimited use. The Doc has maxed me out at 6 pills per day, but I rarely use more than two. I've found that if I pop a pill and hit the O2 at the first sign of an attack, I can keep the intensity down to something managable and the duration to less than 15 minutes. The pills then seem to keep the beast at bay for the next four hours and eliminate the shadows. The Verapamil takes a while to kick in. I didn't see any relief for the first week, and I was still getting quite a bit of breakthrough. Talked it over with my Doc and upped the dosage (from 120 mg to 180 mg per day.) Since then, both the intensity of the worst attack, and the frequency of attacks has abated greatly. I'm still getting hit at night, but daytime attacks are rare and I'll be asking my doc to up the dosage to something higher next week, but I have to watch my blood pressure.
Oxygen is the lifesaver. Read up on the topic both here and on the medications board. Tons of good info on the proper use.
Good luck in finding the proper set of meds and I hope you find lots of PF days. Enjoy them. One thing about this damn horrid condition - it makes you appreciate life a bit more - at least it does for me.
domm

Title: Re: Questions...one more time, then I swear Ill lu
Post by Jim R on Sep 14^th, 2002, 1:40pm

domm,

You're still on a pretty low dose of verapamil, so if you keep getting them, I'd talk to your doc again about bumping up. I was on 240 for years and recently went to 480 and still getting them, although, for the most part better than they were. Many people are on 720 and some even 960, which is the max., I believe. Good luck and PFDANS to you - Jim R

Title: Re: Questions...one more time, then I swear Ill lu
Post by domm on Sep 14^th, 2002, 1:52pm

Jim - yeah I know, but I am getting some relief. afraid to go too high because I want to be able to get off it when my cycle ends. Now - I think that may be naive of me (thinking I can get off of it) but I hate taking meds, and I have had (historically) long remissions (3 yrs). I don't want to take a drug for 3 yrs when I don't need it....if'n ya know what I mean... I am so lucky with my CHs compared to many others - yourself included - that I thank God everyday.
That which doesn't kill us makes us stronger.

Hang in there friend - your PF days are just ahead.
domm

Title: Re: Questions...one more time, then I swear Ill lu
Post by NancyMcFree on Sep 14^th, 2002, 2:23pm

Maybe I didn't make myself clear ... but the shadows you get between the clusters (while in cycle) are much like a bad sinus infection. The eye watering and tearing is also a side effect ...... I think my first cycle started with these symptons ..... which were really shadows (not cluster attacks ... I know what they are ... the wamma geeeza mamaa oh crap wake up call). I am just saying my first cycle ever started with these symptoms and I think perhaps I started my first cluster with "shadows" ... I never had a sinus infection at the start of my first cluster ... they did a cat scan and told me that.

Anyway ... it's just a thought.

Title: Re: Questions...one more time, then I swear Ill lu
Post by pjeje on Sep 17^th, 2002, 8:19am

Hi all..

Isnt it amazing how so many of us have been treated in the beginning for conditions we didnt even have?

Im curious about shadows which I have been seeing that word alot, but havent as of yet found the true meaning of. Possibly different connotations for different people. It just dawned on me to search the "word" out here, which I will do.

As I am into my third week of my first cluster, not having a cluster since last weekend, I stated that I was keeping track of every ping and pang, trying to head off any cluster that may arrive. Trust me, not waiting around, but just documenting any weird feelings that seem to be appearing. There has been a couple times, especially the last couple days, I thought I was on the verge of getting a headache, but it didnt begin. Im wondering if what I am feeling, especially the last couple days are shadows? I have felt the pings and pangs more so then previously, eye just beginning to redden a tiny bit but then goes away, sinus a few times really acting up, but that too dissapates. I really wonder how I know when I am out of a cluster? I thought that I was lucky, in as much as yes that first week was horrendous, but I havent had a attack yet. I thought that maybe Ive just gone into remission, but am betting the way I have been feeling this past week, Im still in cycle.

Im on my second to last day of predinzone, thought I was lucky that I had no side effects, but that too I am convinced the last couple days it is making me feel kind of icky. Its hard to be able to tell the Dr. if the predizone is working, since I was put on it after my first week of the headaches, again not having had one for days, and still not having had one after the treatment began.

All this wondering, I dont like it, but want to be as well read and understand it all. Its hard being only on the first cycle, Im sure so many are pros having to have dealt with it for as long as many as you have. Thanks for all the help thus far...

Hugs and a smile...
Pat

Title: Re: Questions...one more time, then I swear Ill lu
Post by echo on Sep 17^th, 2002, 8:29am

Predizone was less than effective for me in control of CH. Sure as hell weirded me out however. I didn't know who I was anymore. My staff at the time wanted to drown me in the toilet.
Verapamil worked the longest for me at 480. Once it quit working I took a break from all preventative meds. Doc wouldn't go higher on the dose. Now it seems that is exactly what we should have done. (next time)

Title: Re: Questions...one more time, then I swear Ill lu
Post by dentedgirl on Sep 17^th, 2002, 9:39pm

Hello people. My doctor gave me several samples of the imitrex shot and pills. The pills did nill, I ate them anyway, the shot worked within minutes. They were 0.5ml injections. I felt kinda flushed and clammy but my headaches were history. I have not taken a shot in over 2 months (I can't afford them!). I see it this way, I take regular trips to the butcher shop so I can't take these shots all the time. It would be nice to have some on hand for an emergency, but if I have em' I am gonna use it up.
I am a little confused about the shadow thing myself. Could someone break it down for me.
When my "attacks" come on, I start to feel a tingling sensation, kinda like my head de-compressing, far-away pain that starts to creep up, then general pain around the eye, then sharp pains starting around my eye, my teeth start hurting, nose gets plugged up ( I am the nose-blowing heavyweight champion), then the butcher arrives. All this in less then ten minutes. Then the fun starts.
Anyways, only "shadows" I can relate with are perhaps the haze that starts because of my eye being so bad. Things don't get blurry, they get....like heavy. Anyone understand?
Mike

Title: Re: Questions...one more time, then I swear Ill lu
Post by domm on Sep 17^th, 2002, 9:56pm

Pat and Mike - for me (and I won't even pretend to speak for anyone else) shadows mean (from Mike's post) "When my "attacks" come on, I start to feel a tingling sensation, kinda like my head de-compressing, far-away pain that starts to creep up, then general pain around the eye" - right up to that point, but the pain never resolves to a full blown OMG cluster. It just kind of hangs around. Check the kip scale on the button off to the left. Sometimes my shadows (kip 1 thru 3) will come and go very quickly (less than 5 minutes), other times they hang around all day - nothing touches them but then they don't go full blown. I've been trying to figure out what brings them on, but haven't been able to pinpoint them. They happened before I started on Verapamil and they have continued to a lesser extent after three weeks of Vera.
Maybe Ueli has some better info on this....
good luck and enjoy your PF days when they come.
domm

Title: Re: Questions...one more time, then I swear Ill lu
Post by Jim R on Sep 18^th, 2002, 5:10am

I too get sinus infections pretty easily and regularly in the fall/winter/spring - many smokers do - and it would be quite easy to mistake the beginning of a CH cycle for a sinus infection - I've done it, then thought, "this must be the sinus infection from hell", before realizing it was CH's (albeit, maybe on top of a sinus infection or cold).

As far as shadows, I've got one now - the mild CH pain and other symptoms, sort of in the background, but you KNOW it's there and could "blossom" at any time, but fortunately, being shadows, they usually don't.

Jim R