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Supporter's Corner >> Supporter's Corner >> 11 weeks and counting....
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Message started by debpa on Feb 11th, 2009 at 11:29am

Title: 11 weeks and counting....
Post by debpa on Feb 11th, 2009 at 11:29am
My husband is a ch sufferer and has been in cycle now for 11 weeks. He had a remission period of 3 years before this, his longest ever. We have been married 6 years and this is the third cycle that I have been through with him.

He is using O2 to abort and is having extremely good luck with it. This is the first cycle that he has actually been relatively "pain free".  When I say pain free I mean that he hasn't banged his head off the floor once in 11 weeks. It's a wonderful thing.

Regardless, this is still a trying time for us. Making sure that his O2 is always in place, not attending certain functions because it would be too difficult to reach his O2 when he needs it....lot's of lifestyle changes.

We both start the day hoping for the beast to go back where he came from. I can see that my husband is starting to become more short tempered and discouraged. I've been reminding him that this will pass....it always does. We just need to take it one day at a time.

Friends and family try to be understanding but they truly don't get it. That's why I'm here now. You guys always get it.

Thanks for listening and letting me vent.

Title: Re: 11 weeks and counting....
Post by Jackie on Feb 11th, 2009 at 4:16pm
You're a good supporter.....proud of you!!!!   :)

Hang in there, Sweetie.....it should end soon.

Remember, we're always around if you need us.

Big Hugs,
Jackie

Title: Re: 11 weeks and counting....
Post by flipperlips on Feb 11th, 2009 at 4:45pm
We're always here to listen so vent away.

Sounds like you both have a good handle on things, so keep hanging tough.

Jen

Title: Re: 11 weeks and counting....
Post by Garys_Girl on Feb 11th, 2009 at 5:02pm
Hang in there!  GREAT to hear the 02 is working!!!!!!!!!!!!!!!!!!!!!!!

Laurie  [smiley=wave.gif]

Title: Re: 11 weeks and counting....
Post by QnHeartMM on Feb 12th, 2009 at 9:04am
I know what you mean - it's great his O2 is so effective as an abortive but it's so stressful having to worry if it will be there when he gets his next hit. We've been at so many things over the years where Joe has disapeared to the car to get to his O2. Do you have the E-size tanks that you can take with you places? I know alot of people have the M-size at home....we always just go with the E-size, I think we have 8 of them in the garage right now. That way he's not confined to the house.

Hang in there, I know Joe gets cranky in cycle, and I can understand why. I just do my best to remember it's not him talking. Glad you feel comfortable reaching out to us, we're all in this together.
Christy

Title: Re: 11 weeks and counting....
Post by debpa on Feb 12th, 2009 at 2:52pm
Thanks again for listening. Yes, Christy, Barry does have M tanks and E tanks although he prefers the M because they last longer obviously. He has one in the trunk of his car at all times. Our bedroom and basement are well stocked with them as well.

I just want our normal lives back. I want to see that happy, humor filled look in my husbands face again.

I know this will end...I just need to be more patient till it does.

Title: Re: 11 weeks and counting....
Post by Guiseppi on Feb 15th, 2009 at 1:04am
Does he take any kind of a preventative med? 02 works great for me as an abortive, but when I'm in cycle I also take lithium daily, it blocks about 70-80% of my attacks. Other popular preventatives are verapamil and topomax. Some end up combining lithium and verapamil before they find success.

If this cycle drags on much longer, might be worth talking to the neuro. By the way,  [smiley=hug.gif] for being a supporter, I'd have lost my mind long ago without mine.

Joe

Title: Re: 11 weeks and counting....
Post by B.Baer on Feb 15th, 2009 at 10:57am
Joe,
    I'm Barry, Deb's husband. I have been on most of the level one meds. at one time or another over the past 15 years with a varied level of success.  Prednisone,Verapamil, Depakote, etc. Currently Sansert (out of Canada) and Topamax.
     Sansert, if I get on it at the first sign of a cycle seems to work very well, however, I had to order from Canada and by the time I got my supply the cycle was well established. I'm not sure if the Topamax is helping much.
      I've found as I get older, the remission periods get longer but unfortunatley so do the cycles. I am not getting hit as many times per day and, dare I say this, the cycle seems to be on the wane. I will be speaking to my Neuro. about Lithiuim, as we have not tried this.
      I totally agree, without our supporters, it can be a very tough road, I should know, I was divorced and dealt with this alone for a long time before I met Deb and she has changed my life for the better in so many ways. To all you supporters, keep up the good work, I know we can be a handful at times, but we turly appreciate it. More than you'll ever know.  

Title: Re: 11 weeks and counting....
Post by Garys_Girl on Feb 15th, 2009 at 11:32pm
B, if the Sansert works really well, are you in a position to consider or have you tried "cluster busting," with alternative meds?  (Psilocybin or seeds with LSA, most use Rivea Corymbosa (RC) seeds).

And unlike with the Sansert, you don't have to worry about your lungs becoming fibrous.

Info is available here:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

The doses involved are sub-hallucinogenic (usually) - and there's actually quite a number of threads in the Meds forum here about the treatment.  It is getting wider and wider media coverage, especially as it seems to be the most effective treatment actually out there, despite its technically illegal status.  Harvard published their study in Neurology in 2006.  RC seeds are easy to order, easy to use, and magic mushroom are also easy to grow.

Just something to consider after you've done your research.

Laurie

Title: Re: 11 weeks and counting....
Post by B.Baer on Feb 22nd, 2009 at 8:21pm
Laurie,
       Thanks, I'm going to do some research, I ,as well as the rest of us, leave no stone unturned.
        I quit all meds. about a week ago, with no noticeable improvment or worsening. I take Melatonin before bed, keep my O2 close at hand and needles in by pocket (Imitrex).

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