Dizzy Dame Posted February 8, 2007 Report Share Posted February 8, 2007 Hi Guys,I had my first seizure last night. It was horrifying because I remained conscious through the whole thing...and swore to God and all the angels that I was dying. After spending the night in the hospital, the ER doc finally managed to figure out that I"d either had what's called a "simple partial seizure" or a "complex partial seizure". We need to do more testing, I guess, before we can figure out exactly what's going on, but my doctors agree that it probably has something to do with the lyme bacteria inflaming my brain stem. Has anyone had these kinds of seizures before? Also, I was prescribed lyrica, does anyone have experience with this drug? Any words of wisdom?-Lauren Quote Link to comment Share on other sites More sharing options...
goldicedance Posted February 8, 2007 Report Share Posted February 8, 2007 Oh dear, Lauren. You have certainly been suffering so. I hope that you are not upset with me for referring you to Dr. L. On the other hand, you now have a diagnosis and the treatment sounds horrible.I take Lyrica. It is similar to Neurontin. It makes me sleepy and I seem to sleep better.Keep fighting!Lois Quote Link to comment Share on other sites More sharing options...
maggee Posted February 8, 2007 Report Share Posted February 8, 2007 hi Lauren...so sorry for what you're enduring...if we want to call it 'enduring'..?? oh myyyyy....i don't know what to call it--anymore!!!!anyways,a quick FYI, as I just saw this yesterday...a post, in case you missed it regarding Lyrica:DSM3KIDZ has just posted a new topic entitled "Lyrica Causing Rapid Hr" in forum "Dysautonomia Discussion".----------------------------------------------------------------------I've been on 75 mg of Lyrica for about 4 days and my hr has increased alot. 95 while sitting to 135 while standing. My normal is 80 sitting 105 standing.Is this just a side effect that will go away? Has anyone else experienced this?I'm suppose to addd another 75 next week but I'm not sure.Any suggestions?=====================================================================LOIS...>>>got your message....ty!!....will write as soon as i can.... best regards to all.Maggee Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted February 8, 2007 Author Report Share Posted February 8, 2007 Thanks Lois and Maggee And Lois, of course I'm not upset that you referred me to Dr L.! She's been so wonderful and I can't thank you enough for helping me find her. I really don't know if I'd have the strength to continue on my journey if she wasn't carign for me, she's always so kind and supportive and I trust completely that she won't let anything bad happen to me (well, not anything that could be prevented). I just hope all this suffering is a means to an end. I've been trying to stay positive, but 2007 has been a really bad year so far...and not just for me: it seems that everyone on the board is suffering right now. Hugs to you both,Lauren Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted February 9, 2007 Report Share Posted February 9, 2007 I all my doctors suspect that I am having the same type of seizures...My mother has epilepsy so I am being sent to a neuro who specialized in Epilepsy...Hope you find some answers/treatment.Jacquie Quote Link to comment Share on other sites More sharing options...
Rachel Posted February 9, 2007 Report Share Posted February 9, 2007 Hi Lauren,I'm so sorry about everything that happened. That must have been scary. I don't have any experience with Lyrica. All I know is that my brother-in-law tried it, but didn't like it, because it was over priced and didn't help him any. I wish I had some words of wisdom to offer. But I don't have any experience in this area. Take care. I'll be thinking about you.Hugs,Rachel Quote Link to comment Share on other sites More sharing options...
nadine Posted February 9, 2007 Report Share Posted February 9, 2007 Lauren-thinking of you and hope better days are soon coming your way- Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted February 10, 2007 Report Share Posted February 10, 2007 hey lauren im so sorry that you are now experiencing seizures.. they are by no means a walk in the park..I have some type of seizure that not epileptic.. but they dont know what kind...I was on lyrica.. but to treat/manage pain.. and i eneded up being allergic to it.. it caused me to get itchy and rashyi really hope that you start feeling better soon lauren.. big cyber hugs to you! Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted February 10, 2007 Author Report Share Posted February 10, 2007 Thanks everyone for your support! I actually had another seizure last night, but this one was much milder. I didn't even go to the hospital because I knew they wouldn't be able to help me. I'm really hoping I don't get any more, but we'll see. Hugs to you all!-Lauren Quote Link to comment Share on other sites More sharing options...
DADofPotsSon Posted February 10, 2007 Report Share Posted February 10, 2007 LaurenSon #2 has had the same type of seizure activity that you have explained. Sometime his would convert into one called tonic clonic seizure, often called grand mal type, though no tongue bitting or incontinence. Sometime they would start right up as Grand Mal type appearing seizure. What we found out is that if he did not take his midodrine during the day, he would then have them during the day, but when on midodrine he only had them at late night. They first used Keppra a seizure medication which made the problem worse causing them to be very frequent. After not being happy with his first neuroligist, we found neurologist Dr. Lamancusa, who understood NCS very well, and he consulted with Cleveland Clinic, and had us take son#2 there for testing. Testing confirmed that it was being caused by NCS and they also diagnosed him with POTS which was an additonal cause, and his seizure events definetly were not epiletic in nature. The Neuro also consulted with several EP's and it was decided to put him on a combination of Dilantin, and Toprol XL. I believe they did this to control the tachycardia, which always seemed to start the convulsive syncope or seizure like events. At an appointment *** Dr. Grubb, he explained to us that the seizure type events are actually being caused by the venous pooling and tachycardia which does not allow sufficient blood flow to the brain. EEG's EKG's CT's and MRI's were also used to confirm that this activity was not Epilepsy. Both Dr. Grubb of MU of Ohio and Dr. Fauad of Cleveland Clinic seem to all say about the same thing "Keep the NCS/POTS under control and the seizure like activity will stop". His current medications are Dilantin, Toprol XL, ProAmatine, along with lots of salt, fluids and rest. He is back in college fulltime.Maybe it would be worth looking for a good neurologist who understands NCS & POTS.DADofPotsSon Quote Link to comment Share on other sites More sharing options...
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