Well, since I'm allergic to Verapamil, they're trying me on this. It's a calcium channel blocker. Anyone have experience with it as a preventative?

Thanks

Mystina

I'm allergic to almost all the crap they pushed.. I'm on 450 mg of lithium now, at 900 I get hives. It's worth a try if nothin works and the stuff is way cheep too!

PF's & PF's,

Rolo.... ;)

wrote on Nov 26^th, 2008 at 2:28am:

I'm allergic to almost all the crap they pushed.. I'm on 450 mg of lithium now, at 900 I get hives. It's worth a try if nothin works and the stuff is way cheep too! PF's & PF's, Rolo.... ;)

Actually this was already ruled out. I've started to go into liver failure once due to Depakote, so when I told the neuros this, they immidiately said no Lithium for me.

I also have a very, very bad history with mood stabilizers, anti-convulsants and antipsychotics. I've also got histamine intolerance syndrome, and 51 medication allergies under my belt. (I got a new one on Monday. Yay.)

Thanks for the suggestion though... I'm jealous of those of you who can use it. :/ I never have the ability to go with the simple, easy, or cheap meds. It freaking sucks..

This is what I did. I cleaned out for a week and did the RC @ 30-40 per 2 day, then I started the lith.. They have blood tests to determine if you are toxic and you could start at a very low dose (with lith level tests along the way) to see if it might work. Not every neurologist is golden and you need to find one that will work with your pathology.

LY..Rolo.. :)

Edit to add; I was on verap, Dep, amatrip, stupomax, and tegritol all at the same time! :o

wrote on Nov 26^th, 2008 at 3:08am:

This is what I did. I cleaned out for a week and did the RC @ 30-40 per 2 day, then I started the lith.. They have blood tests to determine if you are toxic and you could start at a very low dose (with lith level tests along the way) to see if it might work. Not every neurologist is golden and you need to find one that will work with your pathology. LY..Rolo.. :)

The reason the Dilitazem was chosen, was they considered it the least risky for me... The main reason they said no to lithium was the severeity of what happened to my liver with the Depakote. I went into a status seizure, then coma for 3 days due to it. So they're more than likely saving it for 'last resort'.

The other thing is, I dehydrate VERY easily. I can't stop taking my diuretic, either.

The only thing about RC seeds is... there is utterly no way for me to clean out.

If I try, I will end up in the hospital. I cannot stop taking my antihistamines without risking death. If I stopped, I would be taking multiple epi pens per day... Which was the case at one point.

Here's my current daily meds that I cannot quit. I'm leaving out the ones I could taper off of.

Celexa 80mg
Synthroid 100mcg
Ketotifen 2-4mg (depending on how much I need.)
Zyrtec 30mg (More if I wind up with breakthrough hives.)
Pepcid 80mg
Vistaril 100mg
Nexium 40mg
Nuvaring (1 ring, inserted monthly.)
Moduretic 5-50
Donnatal (Phenobarb + Bella donna.) 16.2
Bentyl 10mg
Zanaflex 12mg
Balcofen 20mg
Elavil 75mg
Ativan 1mg

The Ativan, and Celexa if stopped will result in a mental breakdown. No option there.

Nuvaring, without it I would bleed constantly, and be in pain from a fibroid tumor in my uterus.

Elavil was given for the clusters, seems to help with my Migraines. I meant to ask them to go up on it since I haven't had a bad reaction to it...

Baclofen my GP gave me, the Neuro's said I could go up on it because when I doubled the dose during a particularly bad day, the next day I had a few less clusters. That and my Zanaflex help with my hip and back problems, but I can obviously deal with that pain...

Donnatal and Bentyl I was put on before my gallbladder was removed, and for my IBS. I end up dehydrated even faster than normal if I stop them.

Ketotifen, Zyrtec, Pepcid, Vistaril, are ALL keeping me alive. Without those? Back to the epi pens, and more than likely, back to the hospital.

Here's an example of what any of the 51 drugs I've reacted to will do to me.... Don't look if you're squeemish... START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

That's with me being given loads of antihistamines. The steroids they gave me just made the hives worse, now most of them cause hives if I try to take them. No Decadron, no Prenisone, no Solumedrol. I haven't had a reaction to Cortisol yet, so I'm PRAYING that they'll be able to give me a nerve block with it in 6 weeks.

If I could use the RC seeds without detoxing, I might be able to convince my family to let me try them. My family is kinda wary of that, too due to my history...They want me to be watched by a doctor no matter what the treatment I'm using is, since things go from zero to crisis within a short amount of time.

I'm probably the only person on this earth who isn't allergic to regular dogs, but who's throat closes up due to chihuahuas... >_<;

PF wishes for you~
Mystina

ETA: I forgot about Tegritol... I MAY be able to take that. I wasn't taken off of it during the seizures due to allergies... Hm, need to think about that one. I'm HOPING this Dilitiazem'll work though.

Also, that's not my full med list. I didn't feel like hunting down the full list.

I’m sorry sweetie, the Nuvaring (1 ring, inserted monthly.)(BC) I do understand, the rest is quite a cocktail!

I wish the best for you Mystina!

Roland…. :-*

Dah, I forgot the comma! ;)

wrote on Nov 26^th, 2008 at 4:04am:

I’m sorry sweetie, the Nuvaring (1 ring, inserted monthly.) I do understand the rest is quite a cocktail! I wish the best for you Mystina! Roland…. :-*

Nuvaring is birth control, it's a type that you insert inside of your body though.

The odd thing? That cocktail is less than what I used to take! I've gotten healthier in some respects... And I figure eventually, like the CH, we'll find something that works to fix the rest of it. I was told I'd be having lumbar punctures for the rest of my life. I proved that wrong, and I'll be damned if I don't get over the rest of this crap!

I wish you the best too. :)

Mystina

If you read the page before this, you will see a short discussion of diltiazem under PETEH. I said I tried it because a doctor here in Montana, who said his "hobby" is headache, must have found this blood pressure medication has a crossover effect on CH. I suppose you could call Doctor Erich Pessl of Bozeman and ask him about it...altho he is a vastly overworked family practitioner. (You may have noticed that since specialists are better paid, there has been a sharp decline in family doctors recently.)
I couldn't tolerate the stuff. I have a healthy body with good low blood pressure (Thank God!) and a low blood pressure pill seemed to make things worse. I AM on no pharmaceuticals at 64. AND it all shows that CH can catch up with any of us, no matter the body type. That is why I see help in Doctor John Sarno's book, The Mindbody Prescription, that says many pains have a psychological base. In fact, he says he sees that pain is often created in an otherwise healthy area by the body reducing the oxygen supply there.
SEE you..........

Gave it a good try back in the early 90s and had no effect on me.