 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Epilepsy / September 2007Living with too many diagnoses
Greetings! I haven't posted here before but I have been reading and catching up and trying to clean what is relevant and I just wanted to ask a question that is probably unique to me but it is worth a shot. I have had a multitude of illnesses and wonder if this is common among those dealing with epilepsy. A few of the high points of my medical history are 1. hereditary angioedema 2. a near fatal bout with necrotizing fasciitis and 17 abdominal surgeries to try and reconstruct since. 3. diabetes 4. a total of 35 surgical procedures 5. fights with bradycardia that have landed me in ICU and one episode of cardiac resuscitation) 6. asthma 7. TAH/BSO with bowel and bladder reconstruction due to damage from the NF in 2 8. epilepsy with tonic clonics now on Dilantin (this was only diagnosed 3 weeks ago) 9. chronic and longstanding migraines 10. chronic allergic rhinitis with chonca bullosa and surgical correction and the list goes on and on. There are about 37 diagnoses on my list, some corrected with surgical intervention. I have had a total of 35 surgical procedures. I had gastric bypass last year and that significantly help me bring my health into better control, cut down my medication need, and improve my mental status when it comes to my health. These other chronics are just making me INSANE. Now the question (and pardon me please if this has been asked and answered a thousand and one times here); but do any of these diagnoses fish-tail into the epilepsy development? Are there sometimes predisposing problems? Or is epilepsy often just a random surprise sometimes? My EEG was today and my MRI is in two weeks. I have another Dilantin level in the morning as it was not therapeutic last week and I had a major grand mal on Sunday in the car. I really am just learning to navigate this new world of epilepsy and if this is total stupid please just tell me that. Cindi HappyMamaToThree Hi. I've included your olde post below (so I don't forget any comments I might want to make). There are still a few people reading the group, so they mght reply over next day or 2 with specific comments on some of the conditions you list that I don't have experience with. I'll insert some comments at ***s below. About JUN 14 I posted here a Subject line of "Websites of use to newer people". If you can find that with your reader, or can google back to it, it lists about 12 websites that various people have posted or I found over last 8 years. *If you **can't find it, reply on this thread that you don't see them and I can cut and paste it back as a New Post again. (I usually post it each 4-6 weeks anyway.) This group used to have about 30 posts per day, but was disrupted about a year ago? by a 'student' spammer (who is probably offline now, someone reported him :-< so I hope so). There were 2-3 people who had diabetes as well as seizures, but I don't know how or if they relate to each other. Perhaps Howdy Dave or someone who has links to whether those relate are still reading here and will respond. I'll put other comments for now below. /G. (note I'm not a Dr. so comments are my own or what I picked up *here from other's posts.) On Sep 5, 4:34 am, "Cindi - HappyMamatoThree" <lonnicusuoTAKEME...@yahoo.com> wrote: > Greetings! I haven't posted here before but I have been reading and catching > up and trying to clean what is relevant and I just wanted to ask a question > that is probably unique to me but it is worth a shot. > > I have had a multitude of illnesses and wonder if this is common among those > dealing with epilepsy. *** It's not uncommon for seizures to be produced by some condition that pre-existed them and complicated things. Often loss of oxygen to the brain, head trauma or other events can bring it on. (I had encephalitis that damaged part of my Right Temporal Lobe in 1979, even though szrs. didn't start- in that area- until 1993, for example.) Others had Childhood onset or had children who were having some types of szrs. There are about 5 types of szrs and often the medication will be targeted for the area of the brain affected depending what turns up on an EEG and MRI set of tests. *Often Dilantin is prescribed first as it has the least side effects, is one of the oldest seizure meds. (about 1930?) and longest studied so that its success or not can be tracked as you raise dose (if that's called for). They will often start a low dose and slowly up it if necessary, rather than start at Target for your weight, metabolism and expected target as it's easier to *rise toward your target dose than try later to move *Down to what is your ideal dose. Also many Anti Ep Medications (AEDs) can produce their Own side effects if set too high for our use. I was only able to use Dilantin for about a year, before we moved on to another med. for better control of my type of szr. and a second pill was added (reducing the first) after about another year. Last szr. I had was June 1998-- that only matters since the Neuro who did my MRIs and EEGs suggested I might 'hope for' 2-3 seizure per month* (in 1993) based on the Temporal Lobe damage I had from above encephalitis. So there Can be Light at the end of the Tunnel, and it's not necessarily an on-coming train !! :-< More below. G./ A few of the high points of my medical history are > 1. hereditary angioedema > 2. a near fatal bout with necrotizing fasciitis and 17 abdominal surgeries > to try and reconstruct since. **** Did any of the szrs. start after any surgeries at 2? Temporary loss of Oxygen to the brain can be one potential source of eratic electrical firing that can produce szrs. > 3. diabetes > 4. a total of 35 surgical procedures > 5. fights with bradycardia that have landed me in ICU and one episode of > cardiac resuscitation) *** Similar to above, Dr. might? know if there were complications during any of the surgeries that could raise potential of seizures. ****Some of us have either outgrown seizures, or achieved control -- sometimes that could be complicated (for you and the Drs.) if you are taking medications for more than *1 med. condition, as some types can interact or reduce effectiveness of another. / > 6. asthma > 7. TAH/BSO with bowel and bladder reconstruction due to damage from the NF > in 2 > 8. epilepsy with tonic clonics now on Dilantin (this was only diagnosed 3 > weeks ago) **** Tonic Clonic I *think is an older term for what is now called Grand Mal seizures? Mine were at first called that, then mine were called Complex Partial (formerly Temporal Lobe) seizures based on the EEGs and MRIs that were done at that time. When your results are in they might know if there's only 1 place inside they happen and a Name for the type you have. Ask the Dr. if that's the correct name and tell him you're doing "Web Searches", as someone who wants more information on your own condition and things you can do to **Complement the treatments they're doing. *He might have some websites or you might have a Local Ep. Association who have a weblink you can use. Many of these 'clubs' will give you links without your needing (at first) to be a member to participate. I was a member of the Toronto Chapter for about 6+ years as they had a yearly 1-day convention with speakers, chat groups and stuff for those of us who were members (in Toronto Canada at that time there were more than 300 members). During our Lives I've seen 2 statistics (different to just be irritating) of chances of someone having seizures *at some time*- either 1 person in 15, and (more likely) 1 person in 30. So there's a 4% chance at some point of someone developing those. / > 9. chronic and longstanding migraines **** I had those for about 3-5 years at onset, and they were likely related to damage related to my type. It might *not be unusual for those to reduce or subside as you get closer to a target dose of a med. that works. Those were Awful and I don't miss them at all!! Mine were also worse when Rain or Low Air pressure was approaching-- I now use the weather channel to tell if a low air pressure zone is coming and don't Miss that ability at all !! :-< / > 10. chronic allergic rhinitis with chonca bullosa and surgical correction > [quoted text clipped - 4 lines] > improve my mental status when it comes to my health. These other chronics > are just making me INSANE. *** Naw, *we're the New Normal, it's the Others who haven't caught up with us yet! We're just Ahead of the Curve !! As more and more Baby Boomers age, they'll be coming to us for advice. > Now the question (and pardon me please if this has been asked and answered a > thousand and one times here); but do any of these diagnoses fish-tail into > the epilepsy development? Are there sometimes predisposing problems? Or is > epilepsy often just a random surprise sometimes? My EEG was today and my MRI > is in two weeks. I have another Dilantin level in the morning as it was not > therapeutic last week and I had a major grand mal on Sunday in the car. *** Some Drs. might report that we have seizures (until they're controlled) and we can lose our driving priviledges (insurance don't cover diagnosed conditions unless they're controlled). So if you're driving you might want to either have someone along or not drive if you're feeling under the weather -- as I got toward Target Dose my feelings of Brain Fog and headaches cleared, so I could actually tell when I **might be at risk of a szr. Are Your's like That? or do you ever get any that show up without a feeling of discomfort, strange taste or odours that arent't there (that's called an Aura on any sites you look at). **If your's give you sufficient warning before onset then you're closer to control (with Dilantin or med. conditions). If they show up quickly then they can be a risk for ourselves as we could be doing something (cooking, operating a power saw, climbing a ladder, etc.) that could put us at risk if they started quickly. > I really am just learning to navigate this new world of epilepsy and if this > is total stupid please just tell me that. > Cindi > HappyMamaToThree Nah, I wouldn't tell you that... Seeking information about a condition that might turn out to be temporary (under 3 months) or your New Normal, is not stupid-- quite the opposite. We seem to do best (here) when we ask about things that bug us, we don't want to ask a Doctor or where we want experiences of others. Hopefully (hasn't happened for 6 months though), some of the Regulars will show up and see your post too. We had people from UK, Europe, East Europe, New Zealand and Australia, U.S. and Canada and South America posting here and the range of experiences and Solutions or Workarounds was stunning. Hopefully some of the 'Stunned ones' come back. But we can do this here to start with. ****IF you don't see that post I mentioned, **shorten this and Reply to Group here or start a thread about Any Websites about Seizures or Epilepsy (I prefer 'seizures' as that's what's on my Medic Alert Bracelet), and I'll pick it up and put it in this message thread for you. (I'm in Eastern Timezone -- Toronto Canada, so times I might see your reply will depend which timezone you're on (I forgot to look at before I opened this reply), but I usually log on 3-5x a day, as I get Grandson and Niecelet photos (children of Nieces) at random times during some days), so I should get back to your post within about 12 hours of it.) Welcome to our neighbourhood. Hopefully it will be a relatively short visit til you get past these or get full control. It's not Leprosy or like becoming a Politician. It is often Curable or at least Controllable, and often nothing to be feared. Cheers, G./ <Waving wildly> Hi Cindi!!!!!!!!! I've read G's outstanding (as usual) response below and don't have anything to add. Just wanted to say Hi and glad to see your here! We are continuing to deal here. Cody had 2 seizures over the weekend. Nothing huge, but still enough to make me keep worrying. See you around Holly  SignatureHolly F. Sox, RN, RAC-CT Clinical Services Manager Robin Technologies www.careplans.com holly@careplans.com > Greetings! I haven't posted here before but I have been reading and > catching up and trying to clean what is relevant and I just wanted to ask [quoted text clipped - 39 lines] > Cindi > HappyMamaToThree > Greetings! I haven't posted here before but I have been reading and > catching up and trying to clean what is relevant and I just wanted to > ask a question that is probably unique to me but it is worth a shot. Hi Cindi, welcome to the group, alway nice to meet a newbie!! That's an awful collection of ailment's you have there! > I have had a multitude of illnesses and wonder if this is common among > those dealing with epilepsy. A few of the high points of my medical [quoted text clipped - 15 lines] > 10. chronic allergic rhinitis with chonca bullosa and surgical > correction I'll do my best though... I haven't a clue what a lot of them are I'm afraid, all I know is that I have several types of epilepsy, I tend to lose my bladder a lot, I have very bad headaches, allergic rhinitis which causes hubby to wear ear plugs in bed because I remind him of a "sex-pervert breathing down the phone". I don't have any of the others though, but my mother has diabetes, and my grandfather died of the condition, though I'm completely free of it so I doubt there's any real connection. Some of the others have had surgical procedures, though on their heads as a means of a cure I think, I wouldn't know much about it, it sounds a little too frightening, and I'm a little bit of a coward! :-) Sofie SignaturePlease visit my deviantART page: http://sofen.deviantart.com/
|
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2008 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.