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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hello
        
(Message started by: ai on Mar 20^th, 2006, 9:12am)

Title: Hello
Post by ai on Mar 20^th, 2006, 9:12am

Hello all,

I am so glad I found this board. I am starting a new cycle. I haven't had a CH since 1999, so I have been in remission for a while. The other night I woke up with that feeling and kept telling myself it was a dream. I was so sick that this started again I threw up. My last cycle lasted 6 months, and I tried everything. Blood pressure meds and beta blockers never worked, so my doctor tried periactin, the prescription antihistimine that they give to kids for migraines. It worked and I guess is now being used more. I saw it on WebMD. The only thing was it knocked me out for about 13 hours a day. I have three kids now so that is not an option. My doctor decided to try Allegra since it was non-drowsy but that isn't working, and I haven't seen it listed on WebMD or any other site as a possibility so I guess I will try the periactin again. Maybe it didn't really work, maybe I was just at the end of that cycle anyway, who knows?

I had one the night before last that was the worst I ever had. It lasted 60 minutes instead of the usual 20. I thought I was going to die. And no one understands. Everyone I tell says that they have migraines and that I should lie in a dark room with a towel over my head because sounds make migraines worse. I immediately inform them this is not the same. I can't imagine laying still with a CH. Right! More like I am pacing, screaming and banging my head. That is the only way I get through it. I don't care who is around or what sounds I hear. It hurts too bad to think about stuff like that.

I guess from the research I see that I am one of the few percentage of women that get them, and everyone seems to think women have migraines not CH from doctors I talk to. What a mess!

Well I just woke up with one and took an immitrex this morning. I'm here with my three kids and am feeling the ravage that last CH did to me.

Sorry to vent for so long, this is just too much. Has anyone had any luck with periactin? Again, I am so glad I found this board!

Title: Re: Hello
Post by nani on Mar 20^th, 2006, 9:18am

Many more women get them than most drs know. One of the reasons it often takes us longer to get the correct diagnosis. :-/
About the kids... get a special box of toys and activities that only comes out when you're having a CH. It will keep them busy while you're busy "doing other things".

Don't forget to look at the link I gave you on treatments, it's important for you to have the right meds.
pain free wishes, nani

Title: Re: Hello
Post by LeLimey on Mar 20^th, 2006, 9:44am

Hello ai!
I'm another one of those women that don't get CH.. there's alot of us about! ;)
I've never heard of the meds you have mentioned but not to worry as there is a ton of stuff for you to read up on here. There are lots of very effective meds and therapies so read all you can and ask as many questions as you want, you won't be a nuisance I promise. All any of us want is for you to be pain free and we'll do all we can to help you get there.
I have three kids too and Nani's suggestion of "special toys" or DVD's etc is a good one and I hope it works for you.
Welcome to our little family here!
love
Helen

Title: Re: Hello
Post by pattik on Mar 20^th, 2006, 10:05am

Welcome ai, I'm another woman who supposedly doesn't get CH. I guess the positive side for you is that you had a fairly long remission, and hopefully the next one will be even longer. As to the antihistamines, you might want to try just taking them at night, if only for their sedative effect. They probably won't keep the big hits away, but it could improve your sleep so that your days go a little better. Also, take a good look into using oxygen to abort headaches. With the right equipment and LPM flow, it can be very effective. Check out the oxygen link on the left. Sorry you found a reason to be here, but glad you found us.
Pat

Title: Re: Hello
Post by Ghost on Mar 20^th, 2006, 11:13am

Dont let dead beat docs get you down. As you have seen women do get this and they get it just as bad as the guys. The beast is a real MFer no matter who you are. Read the links to the left espicially the o2 and alternative meds ... ask there is sooooo much knowledge here! be strong and never let someone tell you it doesnt hurt that bad!!!!! you know they dont.

stick around and learn, share, help, and be helped.

Mike
Or as you will learn Goat! ;;D ;)

Title: Re: Hello
Post by Bob_Johnson on Mar 20^th, 2006, 12:14pm

A search on PubMed (National Library of Medicine) for periactin and cluster turned up one hit, and that in 1997. Suggests that it has not been found effective for cluster.

Title: Re: Hello
Post by chewy on Mar 20^th, 2006, 7:45pm

Quote:

Has anyone had any luck with periactin?

Completely useless for me.

Title: Re: Hello
Post by ai on Mar 20^th, 2006, 10:25pm

Thanks to all for your posts! You make me feel so welcome in the midst of a crisis. My doctor went ahead and called in the periactin. Nani, I looked at your list and thank you! I will talk with the doctor. I tried a lot of them during my last epidose. Periactin was it I guess. Please pray for me it works again. I googled it and saw that it was mentioned on emedicinehealth, remedy find, and medicinenet, but it seems that it works only on a few amount of people. I am always one of those strange people that nothing else works on. But you all are a godsend. Last time I took Zomig for them and now I have immitrex. I hate the way those make me feel except when they actually help the CH. You all are great!

Title: Re: Hello
Post by RichardN on Mar 21^st, 2006, 12:18am

Hello and Welcome

Make sure you read up on and copy the 02 info to take to your doc. 02 requires a prescription and it needs to be for a 15 lpm regulator with a non-rebreather mask (the one with the bag). Works for 60-70% of us to abort.

I can't take Imitrex (arterie blockage & high cholesterol) . . . so 02 is my only abortive. I can kill the beast in minutes if used early-on in the attack . . . a miracle for many of us. You owe it to yourself to try. If it works for you, you can save the Imitrex for the attacks the 02 doesn't reach.

Also read up on Melatonin and Kudzu suplements . . .both available OTC and reported beneficial to many.

You have much reading to do and will have many questions and here you will find info/caring/sharing from people who truly know your pain.

Be Safe, PFDANs

Richard

Title: Re: Hello
Post by ai on Mar 21^st, 2006, 1:43am

Thanks so much. I will definately try it. I'll do anything. I just got over an attack. The imitrex took a while to get this one for some reason and now I am all sore and weak. I don't like taking it since it makes me so groggy. My kids are all sleeping at least so I am not so tired while they are up, but I am sure I will be tomorrow. I feel like I have been in a major car accident the next day. These CH's are really making me sore afterwards. I am so angry that they are back. Having been in remission for so long gave me a false sense of security. The only thing I can think of that is so much worse is being chronic so I am thankful I got a break for some years. I always worry that this episode won't end and will keep going on. This is pure hell.

Title: Re: Hello
Post by Jasmyn on Mar 21^st, 2006, 2:43am

Welcome

I've used periactin, it is an antihistamine but I think why it is prescribed is that it inhibits serotonin activity (if it is established that your serotonin levels are too high)

Serotonin is necessary during daytime to keep you awake and alert but some of this serotonin is changed by the hypothalamus at night, into Melatonin, which allows your body to go into a rest and sleep phase.(and CHer's clocks are waaay out! ;))

Periactin combined with 9mg Melatonin at night will provide you with a relatively good nights sleep but I found that this combination makes me groggy the next morning while the Melatonin alone does not have this effect. Besides that, after a period, depression starts to set in because of the low serotonin levels.

How it helps for CH? - It gives you a better nights sleep. With more sleep at night, it makes it better to cope with hits.

Unfortunately is did not stop the cycle.

You hang in there. [smiley=hug.gif]

Title: Re: Hello
Post by ai on Mar 21^st, 2006, 10:35am

Jasmyn,

Does it help to take an SSRI antidepressant with the periactin? I am worried about the depression issue. Easy to get depressed with the CH's!

Danielle

Title: and hello to you too!
Post by Richr8 on Mar 21^st, 2006, 11:50am

on 03/21/06 at 10:35:32, ai wrote:

Jasmyn,

Does it help to take an SSRI antidepressant with the periactin? I am worried about the depression issue. Easy to get depressed with the CH's!

Danielle

Your depression will end with your cycle. I personally sitck to the abortive and preventive meds and just recognize the depression as reasonable considering what you go through. The fewer meds you can take, the easier things will go over all. Of course we are all different and you must do what works for you.

welcome and pf wishes,

Rich

Title: Re: Hello
Post by ai on Mar 31^st, 2006, 1:46am

Thanks all! Just wanted to note that I took the advice. I am on anti-depressants now but that is all. And I am on the oxygen now also. It really helps a lot. The only problem is that my cycle is really ramping up now. 6 CH's last night over 8 hours. I had to do the 15-20 minutes of oxygen each time and the tank went empty. Can that hurt me?

Title: Re: Hello
Post by Richr8 on Mar 31^st, 2006, 2:29am

I use it as needed. I haven't read anything negative that outweighds the benefits. I'm sure others will chime in soon.

pf wishes,

rich

Title: Re: Hello
Post by LeLimey on Mar 31^st, 2006, 7:20am

Danielle I've used O2 up to 14 times a day for hits, I'm still fine :) I don't think it will do you any harm but bear in mind it will do you alot more good to get rid of the CH! Also it's alot more "user-friendly" than any other therapy.
Have you heard of a clustermasx? Since using one of these babies I've cut the amount of time I use O2 for by less than half which means I use alot less O2 and, more importantly I have alot more pain free time! I can abort in as little as 5-7 minutes now nd I truly, truly cannot recommend this masx enough. www.clustermasx.com. Take a look, you'll find nothing but praise for it here on this site :)

Title: Re: Hello
Post by RichardN on Mar 31^st, 2006, 11:52am

Hi again Danielle

So glad you got the 02. Did you get the 15 lpm regulator? . . . . and non-rebreather mask or clustermask?

The reason I ask is that more often than not, when we are successful in getting an 02 script, frequently we are given the 8 lpm regulator (and in my case a nasal canulae . . . nose thingy), and direction for 4 lpm. At 8 lpm, it's not totally useless, but not near as effective as the above. And remember . . . use as soon as you can in the attack. Night hits are the worst because he can be at Kip 5-6 before you wake (especially when exhausted from the previous hits) . . . and take that full 15-20 min. to abort. I keep seven "E" tanks and never go into a weekend without at least two full tanks plus whatever I have in the cart.

Sorry you're having such a bad time of it right now . . . we understand.

Be Safe, PFDANs

Richard