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        New Message Board Archives >> 2002 Posts >> Sorry about the lapse...had a good reason
        
(Message started by: Sweet_Landings on Oct 29^th, 2002, 6:52am)

Title: Sorry about the lapse...had a good reason
Post by Sweet_Landings on Oct 29^th, 2002, 6:52am

Sorry about the three week lapse...I have been adjusting to a change in meds and a change in dx. Well, they have decided I have CPH.

They took me off the Tegretol and Verapamil, which was fine because it wasn't doing me any good anyway and put me on Topomax. 25mg a day the first week, 50mg a day the second and now 100mg a day. This stuff is pretty wicked as far as side effects...nausea, 'pins & needles' in feet and hands, weight loss (12 pounds in 17 days)...but no more pain for me.

I guess I no longer belong here, but I wanted you all to know that you all kept me from losing my mind or worse many times over the last year or so and I thank you. May you all be blessed with many pain free days and nights and I pray that soon there is a cure for us all.

Thank you and God Bless.

Title: Re: Sorry about the lapse...had a good reason
Post by Riccardo on Oct 29^th, 2002, 8:15am

Hey, hey...... wait to kiss and go! ;D ;D

CPH is a good reason to stay here.
Is only a deviation from the normal CH!

I'm just surprised form the cure, and the good effects.

Normally, CPH has (as main medicine) the Indomethacine
I don't want to push you to use it (it has some side effects not too good, and the first try have to be done under doctor control (risk of anaphylactic shock in some cases)

I'm amazed that the topiramate have had a so good effect, and in few weeks.

I am sure that you, that have exit the pain tunnel, don't want to return to the neuro but..... I would try. I would ask to ANOTHER Neuro why topiramate works for you, and if there is an alternative (indomethacine)

If Indomethacine works for you, seems that the side effects are less than topiramate, then.... you can try anyway

Ciao, and remain here

Title: Re: Sorry about the lapse...had a good reason
Post by Sweet_Landings on Oct 29^th, 2002, 8:33am

Oh Riccardo! You are a true Itallian Gem! I have spent the last few hours going through the CH archives and while there are many recent CPH posts I see that there have been CPHers here and they have been welcome. I was afraid that I would no longer be welcome. But I see now that this is not the case.

My neuro said that the choice to try Topomax was not the norm but she said that since I am NSAID intolerant, she thought that the Indocine would be a problem for me. She informed me of the side effects of the Topomax in detail and felt that since I had adjusted to such high doses of Tegretol (800mg daily for almost a year) that I would be able to adjust to the Topomax dosage relatively quickly (a couple of months) and feel fairly 'normal'.

I went from 10's on the KIP scale two or three times a day to 5's every other day within 48 hours of starting the Topomax, which is what she thought would happen. I haven't had any trouble since Thursday or Friday last week. My memory isn't all that great right now lol.

But, I am up and around and doing things that I haven't done in a long time. I even drove yesterday for the first time in months! (I have been afraid to, afraid that a pain would get me and I would have an accident)

My doctor's biggest worry is the weight loss issue with Topomax. I am averaging about a ½ pound per day right now. But that is ok for now, since I gained about 50+ pounds last year. By spring we may have to worry about that a little more. :)) I am drinking Soy Protien Shakes twice a day to ensure I am getting enough protien as meat seems to make me very ill now. Also, drinking extra water to ward off Kidney Stones.

We are trying to take extra precautions because of the nature of the medication to ensure that I do not harm myself. They did a lot of blood work while I was there on the 10th. She said she will be doing blood work at least every three months to make sure that everything is ok.

I am relieved that I can stay here with you all. I hope I can continue to learn and help some other people.

God Bless!

Title: Re: Sorry about the lapse...had a good reason
Post by Riccardo on Oct 29^th, 2002, 8:52am

Good good move for your Neuro!!!
In this case I agree on his suggestion.
In fact, if you are NSAID intolerant, you can have bad reactions (read anaphylactic shocks). A friend of mine took indomethacine without any tests, and she won a free trip to the E.R.

Kisses

Title: Re: Sorry about the lapse...had a good reason
Post by Linda T on Oct 29^th, 2002, 6:39pm

Dear Sweets: I'm happy to hear that you finally got a good diagnosis and that something is finally working for you. I know this was a long time coming.

Stick around and keep posting!

Wishing you all PFDAN always, Linda T