Running out of options

Hello, I am a 25 year old female. I was diagnosed with Epilepsy at the age of 9 when I had my first Grand mal seizures. But it wasn't until the past few years that Medicine has become an issue for me. I was put on Dilantin and stayed on it for 2 years when I was first diagnosed. My parents hated the drug as did I because of the side effects I experienced as a child. Bleeding gums, weight gain, and memory loss are hard to handle as a young kid trying to enjoy life. After awhile we decided it was time to try something new and I was eventually put on Tegretol, and have stayed on some form of it ever sense. I currently take Tegretol XR 400mg twice a day. My experience with Tegretol has not been the best either. Besides getting blood work routinely to monitor my levels, I still have constant memory loss; Tegretol interacts with about every other med on the planet. I have a variety of other medical issues like allergies, asthma ect. So I struggle with the treatments for those illnesses as a result. Alas I have continued to take this med as prescribed. What I did not realize was how uncontrolled my seizures were on this med alone. I was having break through seizures on a daily basis, anything from Petit mals to Myoclonic. They were being dismissed as a child being afraid of her epilepsy. It wasn't until I was an adult over the age of 18 and with my husband. That we had decided enough was enough and we needed to try something else with the drug I was already on. In the past couple years I have tried the following medications in this order: Lamictal: I tried this drug on 2 separate occasions each time it made me deathly ill. I could not eat; I was throwing up, nauseated, losing dramatic amounts of weight, and living on ginger and peppermint. My neurologist was in disbelief as he would continually tell me he had never heard of a patient in all his years complaining of such a problem. Once he saw me in his office though he saw how this was no exaggeration. Keppra: I have tried this on 2 separate occasions as well; each time experiencing the same problem. I have extreme Vertigo! I become so dizzy I can't walk. Have to keep my eyes closed. End up with a migraine, and have to just sleep until the drug is out of my system. I can only describe the Keppra experience as torture the dizziness was so bad. The reason my Neurologist and I persisted with trying to find a drug was we noticed when I started to take a second drug with my Tegretol despite the severe side effects I would get from the drug. The seizures would stop. So we continued searching. Zonegran: I recently within this past year tried this one. This one made my stomach very upset. So I was living on ginger pills and peppermint. But I was still dealing with it. The relief of no seizures was better in my opinion. But after awhile of being on this drug, I lost my appetite completely. I lost 13 pounds. I had to put myself on a set food schedule to make myself eat. I was covered with bruises from head to toe, I had no sex drive at all, and my arms and legs would shoot with pain to a point I just sat and cried. I spoke to a pharmacist about the problems I was having, and they said all though they're rare they happen and I'm in the bottom 5% of people with severe side effects from epileptic drugs. That I must be extremely sensitive. Well I spoke with my neurologist, and he pointed out I could not live like that and he pulled me off this one to try something else. Neurontin: So then we tried this. My doctor had high hopes with this one. He told me I would gain my weight back because where the others made it so I didn't want to eat. This one would make me hungry. At first this one seemed to be doing the trick. I started getting bruising and had some pain in my arms and legs. But it was livable. My appetite was back. I seemed good to go. But I was noticing that right after I took the medicine for like an hour afterwards it felt like my seizures would get worse before they got better. I looked up the medicine and it says not to take it if you have Myoclonic seizures because it will worsen them. And of course I have most seizure types. So it was in fact giving me more seizure issues. But I still wasn't ready to give up on it. It was when I noticed my asthma had taken a turn for the worse. I'm pretty controlled and all of a sudden I got really bad breathing wise. I spoke to an RPH and they told me sure enough it causes asthma, bronchitis, pneumonia, worsening of asthma. SO I went to my Neurologist and he SIGHED. Said he had never had anyone complain about that. I was getting quite annoyed when he was saying that to me. I just wanted to yell and say OK I GET IT! IM A FREAK! CAN WE MOVE ON NOW! I know he was just as discouraged as I was. He commented to me that I am a challenge. But told me we were running out of options. He said that if I asked him to pull me off of Neurontin he would put me on Primidone and that he knows I would hate it. He said my current asthma was probably just the season and to stick with the drug awhile longer. My husband and I went home and talked that day. We agreed and I stopped the drug anyways, so I was back to my Tegretol alone; which of course does not work at all anymore by itself. I have been out of work while all this is going on, and I decided to take it into my own hands and started researching drugs. I came to this Epilepsy.com website for example and read up on every drug I could find. I looked at their side effects and tried to determine which ones sounded the most acceptable. None of them look good obviously. But my doctor was giving up, and I looked up Primidone and it looked terrible. So it was up to me. That’s when I saw Topamax. It controls the variety of seizures I have which is good. It is often paired up with Tegretol which I'm also taking. It said it can be taken by itself so maybe one day I can get just on it if it works better. And it’s been around for awhile. There are a few of its more dangerous side effects I'm not fond of. Glaucoma, kidney stones, acidosis, inadequate sweating. ECT. But then I looked up some of the other drugs. I then realized this is really not that bad. The question isn't does it look good as much as it is can I tolerate it. So I asked my Dr. what he thought about Topamax, and he said "You know that’s not a bad idea." He is putting me on it really slowly. It's going to take 3 weeks for me to get on a full dose. I have been on 25 mg for about a week now, and in a couple days I go up on the strength and do that for another week and so on. What I have noticed so far is that it upsets my stomach a little. But my doctor told me it’s used as a diet pill and I'm going to have to make myself eat because I won’t want too. So I'm dismissing the stomach pain as that and me adjusting to the drug. I feel a little dizzy, but nothing too bad at the moment and I have been waking up with a slight headache in the morning that normally fades by afternoon. Then of course there’s always the additional stress of being on 2 drugs. I feel like half of my brain is gone sometimes I’m so out of it. But I still feel anything’s better then seizures! My husband thinks it’s all a matter of adjustment. And so far this seems to be the best one we have tried yet. So it's quite a relief really. Well I just wanted to share some of my experiences with the medications out there. Does anyone have anything good to say about Topamax? Hopefully it will be a good experience for me and it will be the long lost answer my doctor and I have been searching for. If it is, all I can say is it's about time!