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

Don't know how long he's been on the topomax/lithium combo, certainly want to give it a chance to work. Many have found the combo of lithium and verapamil to be the magic prevent. Might be something to consider discussing with the doc depending on how the lithium/topomax works for him. Great to hear the 02 is still working.

[smiley=hug.gif] For you......not an easy road being the supporter, we don't thank you guys enough.

Joe

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

Hang in there Deb. We're here to support the supporters too!

Christy

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.

Hi Debbie.

I'm sorry to hear that your hubby is still in cycle  :'(   Hopefully it will be over soon.

I'm glad to hear that he got through the night last night without a visit from that dirty little demon.  He may not have gotten the sleep, but making it through the night without getting wacked is still something to be grateful for.

Someone is always here to help or to listen if you need to vent.

Hang in there and remeber to take each pain free moment and live it to its fullest.  Also don't forget to take some time out for yourself.  Nice long bubble baths are my escape  ;)

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. :)

Wooohooo!!!!!  Made it through night #2.  That's fantastic.  I hope that means he's nearing the end of his cycle.

Has he tried Red Bull or Monster energy drinks to fend of those shadows?  Or even coffee can help.  My hubby slams down a Monster and that sometimes helps.

Got my stuff crossed for you guys too  ;)

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  

The energy drinks combine caffeine with taurine that as I understand it, gives the caffeine kind of a "turbo boost" ;) Might be worth a try. Hoping the damned beast is done with him and he doesn't need it anyways!

Joe

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. :)

Thanks again.  I mentioned the energy drinks to Barry so maybe he will give it a go today.

In the meantime....and I hesitate to say this too loudly because the beast has big ears.....Barry made it through night number 3 without a HA. He's sleeping a little better each night as his body is getting more accustomed to the topomax. Hopefully he will get a solid 8 hours of sleep soon. It's been a very long time since that happened.

Will update as time allows....

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

I have a new concern.  Barry has not had a headache since last Monday....a week today. :) He is still taking Lithium (1200mg daily) and Topamax (200mg daily).

However.....he has been having what he describes as constant "pressure" behind his eye/eyes, tingling in his feet/hands which comes and goes, crackling/popping at the back of his neck when he turns his head.  He cranks his head from side to side all the time which he says helps to alleviate some of the discomfort he feels in his head.  Also says he feels "disconnected" mentally.

He has described all of this to his neuro today in an email and is waiting to hear back from him.

My personal feeling is that maybe this combo of meds may have stopped his cycle or maybe it just stopped on its own....we may never know.  But I truly feel as though the medication itself is what is now causing his daily problems.

Has anyone else experienced any of these symptoms from these particular meds? Maybe I should be posting this in the medication forum.....if so, maybe someone can move this for me.

Thanks again.....

Debbie

Debbie,

How are you all doing?

Big Hugs,
Jackie

Sorry I missed your last post Deb? Any word from the doc on the symptoms? I  know that my husband has to have a series of blood tests while on lithium to check the chemical levels. Did Barry have to do that?

Christy

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

I've never experienced those symptoms but I only use lithium, without the topomax. A lot of people have significant side effects with topomax...often called dopeymax! If the beast returns, he might consider just using lithium without the topomax. It's been my silver bullet for many years. Hope the beast is on its way out for you guys. :(

Joe