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Meds a hard thing to get right

Mon, 02/05/2007 - 20:31
Hello I seem to be going through a tough time with my meds. Let me back up first. I was diagnosed with E in Dec. and put on Topamax 15mg. and now I'm taking 100mg. in the morning and 150mg. at night. I slowly worked up to that dose. But what my question is just when I feel like I'm at a level where there are no side effects and there are no seizures, pow!!! More Seizures and I have to get use to a higher dose of meds and another kick in the butt! Along with this comes mood swings too! Can people tell when they need to be moved up by the moods, seizures etc.? Being new to this I just don't know much. I can't get into the chat room to ask questions. I'm keeping a journal and haven't been able to answer this question yet. Oh Yea I'm having simple and complex seizures, hope I can keep my meds down to one. I see that ~Sol and some of his wisdom always helps some of the new comers. Work your Magic!! Thank You

Comments

Re: Meds a hard thing to get right

Submitted by lisaltstheresa on Tue, 2007-02-06 - 09:47
If the meds is causing you mood swings talk with your doctor. Possible your mood has changed too because of the struggle you are going through right now. Sometimes it takes a few meds to figure out, what meds is best for you. It does take time. You really have to be patient. http://www.epilepsy.com/medications/b_topamax_side.html For me I judge to be comfortable as I am on the meds. Not to be seizure free but less seizures. Only because I seem to need a very high dose always over the theraputic range. SO I dont want to be moody, depressed, dizziness, nausea, and I certainly need to think as clearly as possible. And I am sure there is several more that I didnt even name. But all I am trying to say, you need to judge how you are feeling and let the doctor know. Hope they get it straightened out very soon. For I know that can be frustrating. For I have been doing it now for about six months straight. take care Lisa http://health.groups.yahoo.com/group/epilepsyapproach1/

Hi Mary, Ok, let's both look

Submitted by solis on Tue, 2007-02-06 - 15:15
Hi Mary, Ok, let's both look at this togther: I realize to a person newly diagnosed, 2 months may seem like a lot, but trying meds takes time. Believe it or not, now people are LUCKY as compared to only several decades ago.. Today, there is 'an understanding' of E within the medical community; there are considerably more meds; the testing goes way beyond just EEGs & X-rays; plus 75% of people are now completely controlled. Moreover; for those with partial seizures that don't gain control via meds, there is still the possibility of surgery (depending on test results). The point of that blurb is to try to get you to see that no matter how rough things may 'seem', they could always be worse. Smile.. you will get past this. :) Now to answer your question: "what my question is just when I feel like I'm at a level where there are no side effects and there are no seizures, pow!! More Seizures and I have to get use to a higher dose of meds and another kick in the butt!" That is called 'tolerance' or the 'honeymoon effect' and is something you don't see written about here much. After years of complete control with n/p, I was a tolerance victim, so I realllllllly understand the frustration. Let me get you some info on those effects: "Some people with epilepsy find that over time they have to take larger and larger doses of their seizure medicine to achieve the same result. This effect is known as tolerance." (by Orin Devinsky..director of the Epilepsy Centre in NYC) http://www.epilepsy.com/articles/ar_1064956631.html As you may know, I also had simple and complex partial seizures. Things that helped me... being determined, not being intimidated by physicians, and I had no qualms about changing pills or physicians. After going though all the neurologists where my GP practiced, I was sent to an epileptologist (= a neurologist that specializes in and who focuses on epilepsy). I had no idea such a speciality even existed, or I'd have asked for one decades before. Within months after seeing the epileptologist, I was completely controlled for the FIRST time in my entire life (on meds that had been on the market for years, but that no neurologist had put me on). So, my advice to anyone would be to see an epileptologist as opposed to a general neurologist, but someone told me not all US insurance pays for epileptologists, so it's likely best I keep quiet. If I were American, I'd be battling with those insurance companies, as IMO that's discrimination towards people who need epileptologists. Here is an info page on the drugs available (also by an MD) http://www.epilepsy.com/articles/ar_1139326893.html I knew if I had simple partials as my awareness wasn't affected.. but I stopped getting auras decades ago and didn't have after-seizure headaches, so I had no idea when (or if) I'd had complex partials as I had no memory of the event. Re: "Can people tell when they need to be moved up by the moods, seizures etc.?" The goal is 'complete control', yet all meds have a level that's too high. That's likely why many people are on 2 meds. (Also many of the meds are not intended for solo use.) If you are still having seizures you are not totally controlled, so changes in meds should be made. Today, after trying about 2- 3 meds many people, with partial E, then get tested for surgery. "Surgery is now being performed on some patients whose seizures have been uncontrolled for only 1 or 2 years. At least two single drugs and a combination of two or more drugs should be tried before surgery is considered." http://www.epilepsy.com/epilepsy/surgery.html Mary, I hope that this info is if some help & know I wish you the best E-mail me, if you'd like. (Gender shouldn't be a problem as we're both the same) ~sol

Re: Hi Mary, Ok, let's both look

Submitted by mary_g on Tue, 2007-02-06 - 20:11
Hi it's me! ~sol I can't beleive you came to me with a reply. Thanks so much! My Dr. upped my meds this afternoon my morning dose is now 150mg. The same as night, maybe this will help the moods and everything else. Everyone here is so helpful and nice. I just have a log on the fire and enjoying the evening. Thank you. Thank you.

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