Trying to help myself

sandi · #1 09-22-2010, 01:46 PM

Without having a Dr, and trying hard to manage all this myself on the reccomendation of a friend. I decided to try Alteril. Mainy to help me sleep, as I jerk awake at night all night and the lower my qualty of sleep of course the
more problems I seem to have .
It is natural L- Trytophan and other blend s like Gaba, skullcap, valerian hops ect. It seems to be helping , I've only tried it for 3 days now , so I'll see if it lasts.
The only other medication I have is the Xanax . I had the mirapex for restless legs, but it was causing me extreme naseau and I couldn't stay awake several times a day it was also expensive.I really got no better sleep.

**Nakamova** · #2 09-22-2010, 01:50 PM

Hi sandi, be very careful since herbal remedies aren't closely regulated in terms of the ingredients and levels of those ingredients. I've also heard that some of the companies that market Alteril are scammers who will charge your credit card extra...

sandi · #3 09-22-2010, 05:35 PM

Thanks for the heads up I did buy it at walmart.
If nothing else I hope to get better sleep and some help with the depression I've been feeling as I'm pretty stuck right now with out money or Dr.

**Endless** · #4 09-22-2010, 08:17 PM

Be careful Sandi. I want you to be better, but I don't want anything bad to happen either.

Some of the anti-seizure medications we take work by affecting the GABA receptors. I have no idea how eating GABA will affect seizures. Maybe someone more educated on that than I am can chip in some knowledge here.

sandi · #5 09-22-2010, 09:16 PM

I figured since I didn't have a definite seize Diagnosis, and was desperate I would try something! Last month was not good. So I was down as well.
I am being very careful. Especially since the Lyrica sent me physco.
I have a number of drugs here, prozac, cymbalta, topomax ect. but I am afraid to take them.So I am being very careful of any unwanted side effects.

sandi · #6 09-27-2010, 01:05 AM

Well I messed up this week really badly by taking 2 Zyrtec accidentally, after that I did take the Alteril 1 night and it worked but the second night came back to haunt me really bad. I may try 1/2 dose don't know.
I felt funny all day today, and while I shouldn't have a had some wine which I regret , and now that I am a little better I can't sleep .

**Endless** · #7 09-28-2010, 06:21 AM

Wow, Sandi,

That's a lot of drugs. If you do decide to take them, please ask your doctor in what order you should add them, in what dosage.

And please think twice before drinking. It has a short term gain, but a huge longer term loss. I don't know about you, but about 5-8 hours after even having a small glass of wine it's seizure central for me.

I'm not familiar with zyrtec, but I can't take benedryl. With topamax it gave me a nosebleed. With everything else it just puts me to sleep first, then later my body buzzes.

sandi · #8 09-28-2010, 12:46 PM

Zyrtec is for allergies, have a little here in the fall dose is 1 per day.
I fell asleep on the couch and somehow in my sleepiness woke did the whole bed routine again ,(brush teeth, take meds ect) I had done it earlier already.
I don't know why I was on auto pilot maybe overtired.
All those Drugs I listed are the ones my prior doctor wanted me on!
I can barely take one drug without symptoms less lone so many , I had tried and had reactions to all them before he wanted me to try again!
The topamax I just can't bring myself to take out of fear.
I know I shouldn't drink at all , so I have to stop it, I am so desperate to feel somewhat normal somedays I don't care. I get a brief respite- and yes the next day is hell.
But sometimes the next day is hell anyway

**Endless** · #9 09-28-2010, 09:34 PM

Originally Posted by sandi

:

The topamax I just can't bring myself to take out of fear.
I know I shouldn't drink at all , so I have to stop it, I am so desperate to feel somewhat normal somedays I don't care. I get a brief respite- and yes the next day is hell.
But sometimes the next day is hell anyway

Oh, Sandi. I wish I was there to give you a hug. Some days are rather hellish. It's important to just hang on and they get better.

If the medications were better or easier, seizures wouldn't be such a hard thing to treat. If you've ready some of my posts, I've had a running battle asking myself the question, "what's worse? the seizures or the meds?"

I understand your fear of the Topamax. It did some pretty evil stuff to me when I was on it. But most people take it and they are symptom-free - no side effects at all. They do really well. Have you already tried it? You may be one of the lucky majority. If you tried it and it didn't work out, have you asked your doc for something else?

On drinking... Self-medication with alcohol is something I'm beginning to think might be common in people with seizures, or many other brain disorders. Especially before they begin on meds or don't have a diagnosis. Or when they just can't take it any more. It numbs the feelings and the seizures for about 5 or 6 hours. But then it triggers even more seizures, so it's a long spiral down.

I understand the occasional drink, too. Once in a blue moon I've had one glass of wine at the encouragement of my friends, only to have a spike in seizures later. I'm really through with that now. It feels too icky.

Normal? What a great idea. I think I'll make myself a "normal list." Things I can do to feel normal, but won't give me a seizure. Things that are a little bad and other people do all the time, but they won't send me into seizure-city.

<<<hugs to you>>> It's gonna be okay. Just work with your doctor to get the right meds in place for you.

sandi · #10 09-29-2010, 01:42 PM

They Dr's wont see me , as I owe and have no insurance. So until I can rectify the situation I'm stuck! Coping anyway I can.Today is a better day for me.
I consider myself lucky to string together 2, without a problem. Thanks for the encouragement.
I know when I come here I'm not the only one who struggles , there are many more.Prayers

**Endless** · #11 09-29-2010, 01:45 PM

Sandi,

Where do you live? In the U.S? There are free clinics in most cities. And if it gets too bad go to the emergency room of a public hospital. They HAVE to treat you. The free clinic is the best place to get a long term prescription.

If you can't afford your medications there is a string in here on that very topic, with referrals to free or discounted medications.

<<<hug>>>

sandi · #12 09-30-2010, 09:34 AM

The free clinics here are only for the very poor and I have no transportation to get there. I went to a community sliding scale clinic. Because I had insurance at the time I got no break! They don't take into account a 15,000 dollar deductible.For 133.00 I did get my Xanax renewed which I sparsely use
They keep wanting me to try more and more anti-depressants, the last one Cymbalta, Was great 1st. Day, Second day I was agitated , 3rd day I thought I had a bad seize and then spent an entire day constant flailing around as what felt like electricity surging throughout my body,like someone hooked a tens unit up to me spike on high! when I called they said if I just stayed on it those symptoms would go away!I was so sick I couldn't believe I was told to keep trying.I keep trying to tell them I don't need seritonin, like they think I do.
But I always get some stupid response that If it were that bad I'd be in the er.Nothing on the eeg go see a shrink!Are you just trying to get disability?You name it I've heard it One of the Classics Menopause can do that to you!
Duh! Unless I know in advance I'm gonna seize and call 9 11 . I am here by myself whose gonna know. And I am here by myself 90 % of the time.Hubby has told them,they don't listen to him either.Trying to get insurance again.
Most of mine are simple partials thouh they have become complex and I can have T/C's occasionally as Well. If a medicine says it can cause seizures it's usually not gonna work for me that includes benadryl, cold medicines, herbs like ginko or ginsing ect.

**Endless** · #13 09-30-2010, 12:18 PM

Hi, Sandy,

I'm sorry you are in such a tough place right now. I'm hoping you get insurance, too.

A lot of over the counter meds & herbs have interactions with our anti-epileptic drugs. I can't have Benedryl (it made my nose bleed), sudafed (it makes my head buzz), or aspirin (now it trashes my stomach). I've never taken a few of the herbs because of safety warnings, like St. Johns Wort or Ginko. Don't know about the rest.

If you find the right med, do try the drug assistance websites. Lots of folks in here have gotten help that way. And most of them will only help people who don't have insurance, so the time to try them is now, before you are on insurance again.