Hi. It's been six weeks since I posted here last and yes, my husband is still in cycle. 17 weeks, several holidays and birthdays in between and we are still surviving!! He is still beating down the beast with the O2 and has been taking lithium for several weeks and is now taking topamax in conjunction with it.

Last night he managed to get through the night without a HA but didn't sleep well. I'm guessing the restlessness is the addition of the topamax and hopefully he will adjust to it.

This is the longest cycle he has ever had. He gets very discouraged at times and frankly, I don't know how he gets through his day sometimes. His strength and resolve gives me the energy I need to support him.  I think we charge each others batteries when things get tough.

I cannot tell you how much I appreciate this site for it's wealth of information and support. It's been a lifesaver.

Thanks again,
Debbie

Thanks Joe.

Barry has been on the lithium for three weeks now, 1200 mg. daily. Just started the addition of Topamax two days ago.  We'll see how this goes for a few weeks and then if need be we'll talk to the doc. about verapimal/lithium combo instead.

Your input is very much appreciated, thanks again.

Debbie

Welcome Debbie and I hope you both get a break soon.

It is often a long and frustrating road while trying various medication. Hang in there and do come to vent if you need to.

Painfree wishes to you.

Thank you all for the kind words of support. I too am hoping that this cycle will end for him soon.

On the bright side he managed to make it through night number 2 without a HA!! In fact he hasn't had anything in two whole days except some heavy shadows off and on throughout the day which are still an annoyance. Hopefully that will taper off also.

Keep your fingers crossed....as for myself, I'm crossing everything that I have two of.

Thanks flipper.....Barry hasn't tried the energy drink solution and frankly, he drinks so much strong black coffee during the course of the day that I doubt he could increase his caffeine intake much more than he has already.

I will certainly mention it to him though. Thanks again.

Debbie

I use the coffee monster drinks  cause i can chug one quick.
they  have little or no carbonation and dont taste fruit piss water.

thank you for supporting a fellow clusterhead, i hold supporters with high regard.

That's awesome Deb. Always glad to hear when treatment is having positive results!

Debbie,

How are you all doing?

Big Hugs,
Jackie

Thanks for the hugs Jackie and in answer to your question...we are holding up ok.  Barry has been incredibley stressed out lately mainly because we can't get a response from his neuro. on any of his symptoms.  The man does not call back or respond to email and it's infuriating.  I think we need to find a new doc..

Christy-Barry has not had his blood levels checked since the first week he started taking the Lithium...since then his dose was increased twice and the Topamax was added and also increased. In the meantime we decided on our own to wean and eventually quit the Lithium and Topamax all together.  The side effects were not worth it.

Barry has been totally off of the meds. since Sunday morning. He made it through Sunday and Monday HA free but still with some shadows.  His neuro. office arranged for him to have an MRI to see what was going on in his neck and head.  He had the test yesterday and if we're lucky his neuro. will actually call with the results.

Early this morning at 4:30 a.m. to be exact the beast came calling. Just once....with a little teaser that was just enough to wake Barry up out of a sound sleep and put him on the O2 for a few minutes.  He was able to go back to sleep immediately afterwards and slept till his normal wakeup time.

I want to kick the beast into submission....literally.  Not sure now what the next move is and without any real input from Barrys doc. I feel like we are on our own.

Ok...I'm done venting yet again....thanks for listening.

Debbie