Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 << Pain has been the central part of my life since then along with the problems associated with it. I've always been pretty much alone in my struggle to deal. I live alone near Tampa Florida with my two dogs who give me a reason to get out of bed each day.>> Hi , Welcome to the group and know that you are no longer alone in dealing with the pain! This is a very understanding and compassionate group of people who are always willing to jump in and help. Sorry for your pain but glad you found us! Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2003 Report Share Posted June 3, 2003 Hi Ann and thanks for the welcome. > > Hi , > Welcome to the group and know that you are no longer alone in dealing with > the pain! This is a very understanding and compassionate group of people > who are always willing to jump in and help. > Sorry for your pain but glad you found us! > Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2009 Report Share Posted January 26, 2009 The first set sounds very much indicative of Complex Partial Seizures. The second sounds similar to a sensory Simple Partial Seizure. DH has never had an "abnormal" EEG confirming epilepsy or "true" epileptic brain activity on an EEG, but he very much has Tonic-Clonic (grand-mal) seizures. Because of this and the fact that stress is his "trigger", his seizures have been classified as Psychogenic. He does have an aura and warning signs that I am able to detect. Thankfully his are not spontaneous and I have plenty of time to get him somewhere safe or have him take some medication to lessen the effects or stop it from happening. He has been on 90% of the anticonvulsants on the market, with Lamictal being the only one that has provided true relief over the last 3 years. Now that he's figured out he has vitamin deficiencies, adrenal problems, and is hypothyroid and has been under treatment for these issues, we're going through a very stressful and emotional time with his grandmother's health that would have otherwise put him in the hospital, and he has been perfectly fine. Finding the right neurologist can make ALL the difference (just like most thyroid patients need to find the right doctor to get adequate treatment). So many of these medications have so many adverse side affects, reactions, cognitive impairments (sure, they stop you from seizing, but you are a ZOMBIE and unable to be a productive member of society/school/work/etc!!!), and with epilepsy being so individual to the patient (especially children), you have to be careful and strive to find someone who really knows what they're doing.... not just "wham, bam, here's some drugs, get out of my office you're bothering me." Where in Texas are you located? - EMAILING FOR THE GREATER GOODJoin me To: Texas_Thyroid_Groups From: christineshreve@...Date: Sun, 25 Jan 2009 23:43:51 -0600Subject: RE: introduction- …… What kind of seizure symptoms is she having? My husband has epilepsy……. She has 3 different set of episodes. We’ve seen many neurologists, who say they can’t be seizures since they can’t prove it on an EEG. We finally have a neuro who is a bit more open minded and doesn’t require the proof of an EEG to agree with us that they appear to be complex partial seizures, based on our descriptions. His guess is that they are located in 3 different part of the brain, which is why there are 3 different set of symptoms. One set is very obviously a seizure – 7 minutes long, no interactive ability, predictable pattern of near-frozen body, and then a complete release. The other two are less obvious, with her mind feeling very foggy, almost blocked, and her hearing going “computerized”, then afterward she is tired for awhile and not feeling well. So far no good solutions, though. It helped to get a doctor who was supportive and not rude regarding our persistence, but so far the current anticonvulsants aren’t really taking care of the issues either. This daughter has very complex issues. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2009 Report Share Posted January 26, 2009 Hi , My son had a seizure and a clear EEG. We figured out it was likely a reaction to wheat gluten. He had been on a GF diet and his low gluten host at church was placed on top of the normal communion bread (our church bakes their own unleavened bread). I would not have known about this except that a friend also is a communion minister and saw it and told them to put it on the separate patten - unfortunately, he was unaware of how sensitive my son is. There is some medical/scientific research correlating seizures/neurological problems with a sensitivity to gluten. You might consider doing the test available from enterolab: www.enterolab.com B. > > .. What kind of seizure symptoms is she having? My husband has epilepsy... > > > > She has 3 different set of episodes. We've seen many neurologists, who say > they can't be seizures since they can't prove it on an EEG. We finally have > a neuro who is a bit more open minded and doesn't require the proof of an > EEG to agree with us that they appear to be complex partial seizures, based > on our descriptions. His guess is that they are located in 3 different part > of the brain, which is why there are 3 different set of symptoms. > > > > One set is very obviously a seizure - 7 minutes long, no interactive > ability, predictable pattern of near-frozen body, and then a complete > release. The other two are less obvious, with her mind feeling very foggy, > almost blocked, and her hearing going " computerized " , then afterward she is > tired for awhile and not feeling well. > > > > So far no good solutions, though. It helped to get a doctor who was > supportive and not rude regarding our persistence, but so far the current > anticonvulsants aren't really taking care of the issues either. This > daughter has very complex issues. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 My DH#2 had these types of seizures and it was due to an inoperable brain aneurysm. Has she had any scans of her brain to look for blockages and such? Sometimes, he would " checkout " - just stare into space. When he came back, he didn't seem to know he'd missed anything. He would also have periods of confusion when he thought he was somewhere else, or even in a different time of his life. Like, he would look at the photo of his son in his Army uniform and say, " Who is that? " He'd also have periods when he seemed to hear sounds that weren't there... lots of variety! Marti > …… What kind of seizure symptoms is she having? My husband has > epilepsy……. > > She has 3 different set of episodes. We’ve seen many neurologists, > who say they can’t be seizures since they can’t prove it on an EEG. > We finally have a neuro who is a bit more open minded and doesn’t > require the proof of an EEG to agree with us that they appear to be > complex partial seizures, based on our descriptions. His guess is > that they are located in 3 different part of the brain, which is why > there are 3 different set of symptoms. > > One set is very obviously a seizure – 7 minutes long, no interactive > ability, predictable pattern of near-frozen body, and then a complete > release. The other two are less obvious, with her mind feeling very > foggy, almost blocked, and her hearing going “computerized”, then > afterward she is tired for awhile and not feeling well. > > So far no good solutions, though. It helped to get a doctor who was > supportive and not rude regarding our persistence, but so far the > current anticonvulsants aren’t really taking care of the issues > either. This daughter has very complex issues. > > > > > Quote Link to comment Share on other sites More sharing options...
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