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        Cluster Headache Help and Support >> Cluster Headache Specific >> It looks like everything is coming..
        
(Message started by: Richr8 on Jan 29^th, 2006, 7:00pm)

Title: It looks like everything is coming..
Post by Richr8 on Jan 29^th, 2006, 7:00pm

.. together except that I am a complete idiot and I am not sleeping, and oh yes there is the chronic tinnitus, so here is the plan. Current status:

Meds:
Pred down to 35 mg from 60 mg (there were a couple of larger Dr Prescribed drops) tapering 5mg every 3 day to 0 (Killed the beast in less than 10 days once started (atleast the K7-10part), I always stall for obvious reasons)

Verapamil 480 MG - I will discuss with Dr about switching to SR from ER

Topamax 100 mg- I will discuss dropping totally(She wanted to drop Verap and replace with Top, but after talking to folks here, thanks Eric, I think her dosing strategy on the Verap may need a look first before moving to the topomax. The Top just does not feel good, and oh that ringing.

Personal:
NO MORE ATTACKS! Yesterday Shadows K3-4 all day until bed at 1AM woke at 5 AM HA free a Zombie but no shadows yet today. On the advice of all you wonderful folks provided I went and purcahsed some Melatonin and Bebadryl today and paln on taking the following this evening to see if I can get the sleep on track:
Melatonin 6mg
Benndryl 50mg
Does that sound about right for starters?
This sound like a good report, but of course I have to get off of the pred without a relapse which I have done succesfully in the past. I am also concerned about the obvious SAs from the Topamax, wobbly gait, confusion, depression, cognitive issues, all very obvious, so I'll need to get off of that and hopefully the Verap holds up. Anyway sorry for the long post. Hoping someone can pick up something useful for themselves. I know how trcky this can be. Also, any tips on the Melatoni and Benadryl would be appreciated. In a y case, I'll report back in the AM.

All the best, PFDs&Ns

rich
the dope

Title: Re: It looks like everything is coming..
Post by hutton on Jan 29^th, 2006, 7:28pm

it great to hear you had a good day. just a little jealous. if the benndrly dont work for you may i sugjest dramamine it has helped me get some sleep the last couple of days

Title: Re: It looks like everything is coming..
Post by BarbaraD on Jan 30^th, 2006, 6:37am

For starters -- take the topamax at NIGHT before bedtime. I've done this since 99 without the side effects...

Melatonin is great for getting some rest at night. But it takes a couple of weeks to start working. You might try tylenol PM for a while with it until it starts working without the tylenol (don't use anything like Excedrin because of rebound headaches). With the tylenol you get the same thing as benadryl -- or you might just want to try the benadry alone (with the melatonin).

The melatonin gets you thru the REM sleep (when the headaches usually hit).

But with the topamax -- do NOT take it during the day! Don't care what the doc says -- Take the whole dose at night before bedtime. You'll sleep off the side effects - at least I do. I've been up to 400 mg (had a couple of side effects at that dose) and was on 300 mg for a couple of years without side effects.

Have you tried Kudzu? It's helping me some. I take it in the morning and the topamax at night. I'm still getting hit (I'm chronic) but not as bad.

Good luck and keep us informed...

Hugs BD

Title: Frustrated beyond belief!
Post by Richr8 on Jan 30^th, 2006, 7:17am

First off, Barb thanks. I am going to try your advice. I had a very good day yesterday aside from the Topoamax SAs, that is, dopeyness, staggered gait, cognitive issues, etc,. and then VERY late yestrerday I started getting a Kip 4-5 shadow. So I took 6mg Melatonin and 25 mg benadryl and went to bed ant 10 PM. Lo and behold, I wake up at frickn 0130, 3 and one half hours later with the same headache just like every night before for the last six weeks. I hAve taken every prerscrition and non prescription sleep aid under the sun and can not sleep more than 3.5 hours in any 24 hour day. This would be good if I felt okay , but I feel like c__p!!! Unbelievable! I hate CH! I hate Prednisone!!!! I love you guys!

Title: Re: It looks like everything is coming..
Post by chewy on Jan 30^th, 2006, 7:43am

Doesn't feel great when you start getting an edge on the beast?

Sounds like you have a good battle plan. The melatonin should help.

Title: Re: It looks like everything is coming..
Post by sandie99 on Jan 30^th, 2006, 11:00am

Rich, good luck! I hope that the beast will stay away. :)

Sanna

Title: Re: It looks like everything is coming..
Post by BarbaraD on Jan 30^th, 2006, 5:47pm

Rich -- don't expect the melatonin to work immediately. It takes a couple of weeks to get in your system. I quit it several times before I finally got it thru my thick head to "stick with it a little while" and then lo and behold it started working. It's not something you can just take off and on. I take 9-12 mg at night and sleep good most of the time. It gets me thru the days without the terrible exhaustion. Also the topamax has a sedative SA so that helps some also.

Glad you're doing better....

Hugs BD