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New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Just a question
(Message started by: Bethany1 on Jun 14th, 2005, 7:37am)

Title: Just a question
Post by Bethany1 on Jun 14th, 2005, 7:37am
Whats the longest hit you have ever had? What if you had no meds?

Title: Re: Just a question
Post by BobG on Jun 14th, 2005, 7:46am
My longest was about 60 - 70 minutes. That was probably 25 years ago. I don't remember the exact kip number but it was probably 7 or 8. All mine were 7 - 8 back then.
I had not been diagnosed.
I had no meds.
I had no computer to Google.
There was no CH.com.
I did not know anyone that had the same pain. Or had even heard of it.

Life sucked back in the good-ol-days.  :D

Title: Re: Just a question
Post by marlinsfan on Jun 14th, 2005, 8:14am
I didn't know I was CH until this cycle. THe longest this cycle was 60 minutes. This was pre-oxygen. I took imitrex and nothing happened. Took another trex after 40 minutes and 20 minutes later in ended.

Title: Re: Just a question
Post by E-Double on Jun 14th, 2005, 8:23am
Hey Bethany,

Last June  I went staright for nearly 3.5 hrs.,,That was one hit unmedicated.

In April I had a series of back to backs long, short but all high levels and mad intense that sent my ass to the hospital......Used my meds/O2 and nothing worked.

Earlier in the week I had a doozy that went over 2hrs. without.......

However, If I were you I would not worry about it ;) ;)
You'll be fine!!!

Title: Re: Just a question
Post by JJA on Jun 14th, 2005, 10:33am

on 06/14/05 at 08:23:45, E-Double wrote:
I went staright for nearly 3.5 hrs

Me too.  I've done the 3-4hr clusters many times...just lucky I guess. The deal with these for me is that I can't say it was exactly 3 hrs or 4 hrs. It just slowly fades into an intense shadow that lasts for 12 hrs or so, but the real agony lasts about 4 hrs. It sucks. I used to have half hour hits like clock work, then one cycle it just changed.

Jesse

Title: Re: Just a question
Post by nani on Jun 14th, 2005, 10:35am
2 hours

Title: Re: Just a question
Post by pattik on Jun 14th, 2005, 10:39am
About 3-4 hours--last summer while on vacation with no meds or O2 available.  I don't ususally have summer hits.

Title: Re: Just a question
Post by Karla on Jun 14th, 2005, 11:07am
4 hours.  No meds I went to the ER and got a shot of dilaudid which knocked me out so that took care of the problem.  Usually my ch are only 1 1/2 hours.

Title: Re: Just a question
Post by burnt-toast on Jun 14th, 2005, 11:23am
Bethany1-

My longest attack was nearly 4 hours.  But frequent attacks between 2 - 3 hours are common for me - even with meds.  An attack last night lasted nearly 2.5hrs.  

If you don't mind my asking - what are your specific concerns regarding this issue?


Tom    

Title: Re: Just a question
Post by Bethany1 on Jun 14th, 2005, 11:33am
I was just curious. I'm pregnant and not taking any meds and have been hit pretty hard the last few nights, and they have lasted for 3 hours. I'm going to see if I can find some old threads regarding pregnancy and ch. Thanks for all of your input, I just wanted to make sure I wasen't crazy. It's been a long time since I havent been able to use any meds, I had forgotten how bad it can be. Well, not forgotten, just got used to having the meds around, ya know? Wierd. Wishing you all pfdans- thx-

B

Title: Re: Just a question
Post by Candycane on Jun 14th, 2005, 11:56am
Bethany,
God, I don't have time today but saw this and just brought back (sorry to say) bad memories......I went thru being pregnant and I didn't know what was wrong with me then. All I did know is I was soooo scared of the headaches more than the birth of my child. I BEGGED the doctor for something........ I pray to god you are not hit too much during this wonderful time!  Does 02 work for you and can you use it then.

Be Well, hon [smiley=hug.gif] [smiley=hug.gif]

Title: Re: Just a question
Post by nani on Jun 14th, 2005, 12:03pm
Beth, damn, I'm sorry you're getting hit.   :'(
I don't want this to be construed as advice...I AM NOT A DR. I am very curious to get opinions, though. Could you print out Flo's page on kudzu and talk to your OB and your Neuro about it? Early on in the first thread, there was talk of phyto-estrogens in kudzu possibly having an adverse effect if pregnant or nursing. There just isn't enough evidence (I think) to either support or invalidate that. And now for the BIG favor....could you talk to them about it even if you wouldn't consider using it?
I hope you get a break soon, sweetie. hugs, nani

Flo's page:
http://med-owl.com/clusterheadaches/tiki-index.php?page=Kudzu

Title: Re: Just a question
Post by lionsound on Jun 14th, 2005, 1:39pm
[smiley=hug.gif]

Bethany please check yer PM's

- Rori

Title: Re: Just a question
Post by burnt-toast on Jun 14th, 2005, 2:04pm
Bethany1 -

I don't know what to say.  What you are going through must be awful.  

Obviously your doctors and maybe others that have had to go med free for a period of time are going to be better sources of information.  

My prayers shall include a request for Pain Free time for you during your pregnancy.

Congatulations and Best Wishes

Tom  

Title: Re: Just a question
Post by Margi on Jun 14th, 2005, 2:30pm
Bethany, I am so sorry to hear you're getting hit hard again.  Med free is so scary.  

We had a gal show up at OUCH Canada last week, (from Belgium actually) in the same situation as you.  Her doctor actually advised her against even oxygen during pregnancy, poor girl, I'm still not sure why though.  

Certainly not a time to try anything new and EVERYTHING must be discussed with your doctor in advance.  My daughter's just been through her first pregnancy and her doctor told her in no uncertain terms - absolutely NO herbs of any kind.  Not even echinacea when she was getting a cold.  I know doctors tend to err on the side of caution most of the time, but during pregnancy I don't blame them.  So, please, if you are considering anything alternative, include your doc's advice in your decision.

Hopefully, your hormones will balance out after the first trimester and you'll find the cluster break that most pregnant gals get.  I don't doubt that that is why you're seeing an increase in cluster activity, not only because you're not on meds, but because of the hormone flux.  My heart goes out to you. :(

You should really PM Mel - she's pregnant now and this is her third child.  She's been a cluster head for a long time and she would probably love to give you her tricks on how she deals with cluster pain while preggers.  She's a jewel of a gal and I know she'd be happy to help you.  

All the best, Bethany, hope you find some relief soon.  Don't forget about using ice and water.  

Title: Re: Just a question
Post by LeLimey on Jun 14th, 2005, 5:31pm
[smiley=hug.gif] I'm sorry you are getting hit Bethie.
I think Margi is right. When i was expecting Jasper I got told not to even use any aromatherapy oils. I guess they think you can't be too careful. Speak to your neuro and gynaecologist though. They will know what is best for you
lots of love
Helen

Title: Re: Just a question
Post by Sean_C on Jun 14th, 2005, 5:57pm
Congrats Bethany ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D Your gonna be an awesome mom I bet ;;D I'm happy for you guys ;;D

Hopefully the beast will pass soon, if your getting nailed hard now it usually means some relief is close by.

PF vibes headin your way sis ;)

Sean..........................................................

(sp)

Title: Re: Just a question
Post by burnt-toast on Jun 14th, 2005, 7:54pm
Bethany1 -

The Good Lord hasn't been real good at answering my prayers lately and I didn't feel right leaving you hang out there.

So far the references that I have found list 100% O2 as the best solution to stopping CH in your situation.  Best to discuss with your Docs. to see if this may be of help and something you can use.

If I come across anything else, I'll try to get word to you.

Best Wishes

Tom    

Title: Re: Just a question
Post by jokrs2 on Jun 14th, 2005, 8:07pm
I have had hit's that have lasted well over 5 hours at k-10 with just a few minutes of perhaps hard shadow and then right back into another one for at least 5 hours. These happened while taking imitrex and lasted 14 days straight....End of imitrex as a treatment. LSA ended the cycle. Good luck Bethany. Blessings, Joe

Title: Re: Just a question
Post by Flash on Jun 15th, 2005, 5:29am
During the peak of an episode I have experienced (more than once) 4 days of 6 attacks per day at 3 hours each attack with an intensity of kip 9-10.  I'm lucky if I get an hour off in between the headaches, and ven during that hour the shadows are up to migraine levels of intensity.

Title: Re: Just a question
Post by Langa on Jun 15th, 2005, 8:32am
3.5 hours of a kip 10...I begged for death...

So sorry you're getting hit Beth...did you speak to your doctor yet about the 02?

Hang in there girl!

Love,
Langa

Title: Re: Just a question
Post by sandie99 on Jun 15th, 2005, 1:43pm
Bethany,
I'm so sorry you're getting hit hard... [smiley=hug.gif]

(((((((((Vibes)))))))))

My worst attack ever was nearly 3 hours. Luckily, it has been a long time since I had it. :)

Best wishes,
Sanna/sandie99

Title: Re: Just a question
Post by bnfreeman on Jun 15th, 2005, 2:27pm
Bethany,

the longest I've been hit is about 10 hours. But I have been diagnosed with cluster-migraines. All symptoms of cluster, but they last longer and I vomit with the bad ones. I was pregnant not long ago and was getting hit really hard. The doctors told me demerol was all I can take. But it doesn't help much in pill form.  O2 was the only thing I could do. I looked up past posts on women who where pregnant and many of them didn't get hit during that time. Maybe things with slow down soon. Hang in there. Unfortunatly I miscarried at 6 weeks. And I know it is from taking all kinds of meds before I knew I was pregnant. So stay strong!

Brandi

Title: Re: Just a question
Post by Sandy_C on Jun 15th, 2005, 5:23pm
"My longest was about 60 - 70 minutes. That was probably 25 years ago. I don't remember the exact kip number but it was probably 7 or 8. All mine were 7 - 8 back then.  
I had not been diagnosed.
I had no meds.
I had no computer to Google.
There was no CH.com.
I did not know anyone that had the same pain. Or had even heard of it.

Life sucked back in the good-ol-days. "

Absolute ditto!  My first cycle, since I thought I was going to die, each hit seemed to last for hours.  Now that I've learned what it is that I have and ways to prevent/abort,
hits are really very short in comparison - 15 - 45 min each.

Title: Re: Just a question
Post by ClusterChuck on Jun 15th, 2005, 6:29pm
Longest hit, 3 hours 20 minutes.  I have had several of 3 hours.

So sorry you are getting nailed so bad.  Most ladies get a break while they are pregnant.  I hope that happens to you!!!

Hang in there, gal, and CONGRATS on the "bun in the oven" !!!

Chuck

Title: Re: Just a question
Post by Bethany1 on Jun 15th, 2005, 7:04pm
Thank you everyone for all of your input, your pm's, support and everything else. This place amazes me. I really appreciate all kindness. Again,

THANK YOU.




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