Discussions By Condition: Nerve conditions

epilepsy recently diagnosed, extreme heat intolerance,quality of life down HELP

Posted In: Nerve conditions 37 Replies
  • Posted By: schalkj21
  • July 17, 2008
  • 06:17 PM

hey guys-i'm 42yo f recently diagnosed with tonic-clonic seizures.history of viral meningitis 7 yrs ago which was misdiagnosed as migraines.sent home and 6 hrs later hubbie found me unconscious almost died.post meningitis with balance and speech problems for approx.1 month after but heat intolerance continues to this day.heat intolerance markedly worse since last hospital stay june2-june5.was in for double pneumonia,urinary tract infection,elevated liver enzymes,boil.ruled out hepatitis,west nile virus.unable to do minor exertion without becoming overheated to the point of almost passing out.have been passing out on and off for seven years since meningitis with heat intolerance but was able to function before.have been having persistent problem with boils for about 10 months also.was told elevated liver enzymes last hosp stay do to severity of infections.was anemic then also.thyroid levels fine.hydrating well with water and juices,keep light clothes on and temperature in house down before trying to do anything and it still does no good.balance gets off,lightheadedness comes,legs feel like encased in concrete when try to walk, muscles shaky-this is after light exertion.has anyone had anything similar to this that could point me in a direction?PLEASE?have been on keppra for seizure control which is awesome.also on klonopin at night and effexor xr 150 am and 75 pm since march.any advice would be appreciated.i have a 7 yo dtr and am unable to play with her but would love to.so if anyone out there would answer-i'd be soooo happy:D

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  • If your liver enzymes are up, have them run blood plasma tests for ammonia levels, especially when feeling bad. They need to follow a special protocol for drawing the blood and putting on ice. Some lab people believe other wise but will fubar test if they don't. Also, get copies of your liver enzyme tests --how often have they taken which ones are high? Have you spoke to liver specialist. You may have damaged liver. There are metabolic disorders than cause you to have heat intolerance, seizures and such. There is one more common for women. Where are you located? However, the boils do indicate you could have a staph infection or other and that too will sap you. If you have staph, you need special antibiotics. I had to take those. I don't want to say you have true metabolic disorder like I have because of other contributing factors. However you have some of the symptoms. But you need to rule out the ammonia with several tests, make sure a liver doctor looks at your liver panels, and get the medications for the boils. Good luck and hugs.:)
    Abbydoodle 138 Replies Flag this Response
  • thanks 4 answering.we live in central louisiana.liver enzymes back to normal as of wed.still on antibiotics for boils but they are basically gone.to go to neuro again wed.got my med records from hosp.found i'm diagnosed as status epilepticus&partial seizures.still with fatigue problems with minimal exertion will ask neuro to check ammonia level.what r u diagnosed with?u sound medically knowledgeable.i'm an lpn for 23 yrs.hope all's good in ur world:Dthanks again. bonnie
    schalkj21 21 Replies Flag this Response
  • schalkj21, If liver enzymes are stable may not be where I was looking. I was wondering if your initial problem damaged liver. If so, thought maybe you could have picked up a metabolic issue. Elevated enzymes are a level one indicator. What are your eating habits. How much protein and how much fats? But, I do know that epilepsy can also display all the symptoms you are discribing. They are part of the symptoms for oncoming seizures and such. I am having problems everyday. Have appointment with neuro next month. Am so p.o.'d that it is taking so long this time. Have been in hospital with the seizures. I have metabolic disorder that affects multiple organs. But during my odessey from 1980 until 2005 when I figured out what I probably had and had biopsy in 2006, I have been to every kind of doctor you can imagine. Your symptoms fall in to a family of disorder types that was why asking. I did not realize epilepsy could cause as widespread symptoms as it can, until I found something this morning. Was looking for me. I woke up and had jerks and tremors for about an hour then fell into deep sleep for four hours. Here are all the symptoms I found that epilepsy can produce. Go figure. I have so many but then I have other organ damage so who knows what goes on in my body.The following can be early warning symptomsSensory/Thought:Deja vu Jamais vu Smell Sound Taste Visual loss or blurring Racing thoughts Stomach feelings Strange feelings Tingling feelingEmotional:Fear/Panic Pleasant feelingPhysical:Dizziness Headache Lightheadedness Nausea NumbnessNo warning:Sometimes seizures come with no warning Seizure SymptomsSensory/Thought:Black out Confusion Deafness/Sounds Electric Shock Feeling Loss of consciousness Smell Spacing out Out of body experience Visual loss or blurringEmotional:Fear/PanicChewing movements Convulsion Difficulty talking Drooling Eyelid fluttering Eyes rolling up Falling down Foot stomping Hand waving Inability to move Incontinence Lip smacking Making sounds Shaking Staring Stiffening Swallowing Sweating Teeth clenching/grinding Tongue biting Tremors Twitching movements Breathing difficulty Heart racing Symptoms after a SeizureThought:Memory loss Writing difficultyEmotional:Confusion Depression and sadness Fear Frustration Shame/EmbarrassmentPhysical:Bruising Difficulty talking Injuries Sleeping Exhaustion Headache Nausea Pain Thirst Weakness Urge to urinate/defecateWhen you read all the above it seems amazing but I sure can tell you what I have had. I am sick of the injuries from falling. Fairly sure I have a cracked elbow that hospital missed. My memory loss and cognitive problems drive me nuts. I had seizure last year and went into coma. After that my cognitive issues started. I called my refrigerator the garage. I called my neighbor my husband. When trying to tell my husband to guess what I was making for dinner, I said guess what I am making for Christmas.I asked him what time was our appendectomy instead of appointment. That is just a few for laughs. I know that the word going out is wrong. I can't stop it. But I can't think of the right word either. My spelling is horrible now, I can't see it when I write. Yet when tested IQ is still high. Just part of retrieval and memory is screwed up. I think every seizure does something else to it. Am so tired of it. However with my metabolic disorder which damaged my liver it will never go away.
    Abbydoodle 138 Replies Flag this Response
  • schalkj21, If liver enzymes are stable may not be where I was looking. I was wondering if your initial problem damaged liver. If so, thought maybe you could have picked up a metabolic issue. Elevated enzymes are a level one indicator. What are your eating habits. How much protein and how much fats? But, I do know that epilepsy can also display all the symptoms you are discribing. They are part of the symptoms for oncoming seizures and such. I am having problems everyday. Have appointment with neuro next month. Am so p.o.'d that it is taking so long this time. Have been in hospital with the seizures. I have metabolic disorder that affects multiple organs. But during my odessey from 1980 until 2005 when I figured out what I probably had and had biopsy in 2006, I have been to every kind of doctor you can imagine. Your symptoms fall in to a family of disorder types that was why asking. I did not realize epilepsy could cause as widespread symptoms as it can, until I found something this morning. Was looking for me. I woke up and had jerks and tremors for about an hour then fell into deep sleep for four hours. Here are all the symptoms I found that epilepsy can produce. Go figure. I have so many but then I have other organ damage so who knows what goes on in my body. The following can be early warning symptomsSensory/Thought:Deja vuJamais vuSmellSoundTasteVisual loss or blurringRacing thoughtsStomach feelingsStrange feelingsTingling feelingEmotional:Fear/PanicPleasant feelingPhysical:DizzinessHeadacheLightheadednessNauseaNumbnessNo warning:Sometimes seizures come with no warningSeizure SymptomsSensory/Thought:Black outConfusionDeafness/SoundsElectric Shock FeelingLoss of consciousnessSmellSpacing outOut of body experienceVisual loss or blurringEmotional:Fear/PanicPhysicalChewing movementsConvulsionDifficulty talkingDroolingEyelid flutteringEyes rolling upFalling downFoot stompingHand wavingInability to moveIncontinenceLip smackingMaking soundsShakingStaringStiffeningSwallowingSweatingteeth clenching/grindingTongue bitingTremorsTwitching movementsBreathing difficultyHeart racing Symptoms after a SeizureThought:Memory lossWriting difficultyEmotional:ConfusionDepression andsadnessFearFrustrationShame/EmbarrassmentPhysical:BruisingDifficulty talkingInjuriesSleepingExhaustionHeadacheNauseaPainThirstWeaknessUrge to urinate/defecateWhen you read all the above it seems amazing but I sure can tell you what I have had--a lot of those symptoms. I am sick of the injuries from falling. Fairly sure I have a cracked elbow that hospital missed. My memory loss and cognitive problems drive me nuts. I had seizure last year and went into coma. After that my cognitive issues started. I called my refrigerator the garage. I called my neighbor my husband. When trying to tell my husband to guess what I was making for dinner, I said guess what I am making for Christmas.I asked him what time was our appendectomy instead of appointment. That is just a few for laughs. I know that the word going out is wrong. I can't stop it. But I can't think of the right word either. My spelling is horrible now, I can't see it when I write. Yet when tested IQ is still high. Just part of retrieval and memory is screwed up. I think every seizure does something else to it. Am so tired of it. However with my metabolic disorder which damaged my liver it will never go away. I pray you find answers. I would watch your liver enzymes just to make sure there is not residual damage.
    Abbydoodle 138 Replies Flag this Response
  • Sorry some how there are two posts one with html trash. Don't know how to delete.
    Abbydoodle 138 Replies Flag this Response
  • hey woman-i finally don't feel alone.thank God.i have quite a bit of the stuff you listed.i also am having speech problems like you-sayin weird stuff.it's like it's floatin in my brain but i just can't connect right.i've got the depression, aggravation and i'm really questionin God -what's up Man?my husband's noticed behavioral changes-i'm more aggressive or verbally combative.i feel like i can't handle anything else comin at me.at times i can't tolerate alot of external stimuli sounds,movements. it's like there's so much kickin in my head i can't handle extra.i'm frustrated with docs that wanna label u and b done with u.they feel if u have a dx that should b good enuff.i spend more time arguin with my neuro as i told him -he doesn't hafta live in my shoes.i want my quality of life back.we know our bodies better than anyone.it is very frustrating but we gotta keep fightin for us cuz if we don't who will.chin up.smile we made it thru another day.;)
    schalkj21 21 Replies Flag this Response
  • forgot dietary intake.my appetite sucks.not eating very healthy.alot of chimichangas, yogurt, trail mix with nuts, water, juice(strawberry kiwi)have been eatin baked chicken often though.other than that not much else.maybe a half of a dr. pepper daily.r u on this ketogenic diet i hear uv and what the heck is that ?:rolleyes:
    schalkj21 21 Replies Flag this Response
  • Hey schalkj21, I am going to give you some information to read up on. Since you are an LPN, you can read the information and google more. Here is what I am thinking, you can rule it out by watching liver enzymes and having some basic tests run maybe. I have a metabolic disorder called ornithine transcarbamylase dificiency -- a urea cycle disorder. Mine is genetic, I inherited the little bummer gene from my dad's side of the family. Have been ill most of my life. However, After my last of 8 miscarriages in 1986 started getting worse. Then I had hysterctomy in 1999. That totally spiralled it into full bloom. But was not diagnosed until May 2006 oficially. I self-diagnosed myself in May 2005. Had been seeing a neurologist since 2000 when the seizures, blackouts, and amnesia started. They have not stopped. In January of 2007 went into seizure then coma. After that I had the memory loss, word retrieval and speaking problems. Neurologist says that such seizures and comas do damage to the brain but leave no evidence like strokes. My seizure types have been varied with tremors and jerks joining the party. I took a trip in May again to ER. Local Hospital does not want to touch me, I need to go to Houston med center where special medications are available for the OTC if needed. This past week consisted of the tremors, twitching, sleeping, confusion, anger, itching, and more in the list I provided. I finally stopped most of it by drinking two cokes and eating two peanut butter cups. See my OTC-UCD means I do not digest protein properly. So I only eat 30 grams a day. I was told to cut down sugars and such and loose weight. So had gone to the zero cokes, no sweets, and really eating my veggies. The more weight I lost, the worse the seizures. I reported all of this to my doctor today who is a metabolic/geneticist/cell biologist/researcher/clinical doctor in the Houston Medical Center. The problem with certain types of epilepsy is they require foods that may be in confilct with urea cycle disorders. I have him looking into. And I am going to read more on. I would first eat right. Am not up on the diet for epilepsy. I looked up the Ketogentic diet. It requires you to fast and burn fat. With a urea cycle disorder -especially OTC my body cannot burn fat. I am missing the amino acid that burns fat. (Bummer I know). So if I tried this diet could kill me. I think before I fell too deep into diet I would really have doctor check for ammonias, recheck liver enzymes and continue to do so. And also run 24 hour hour check for OTC. Cant remember pill name will have to look up. Here are some are articles to read. Women can get OTC from genetic defects or from damage from illness or accidents to liver. Seizures are a companion of the OTC. "Adult ONset of Ornithine Transcarbamylase Deficiency: an unusual cause of semantic disorders, Rimbaux, et al"Urea Cycle Disorders" Soledad Keppe, MD; Asad Mian, MD; and Brendan Lee, MD, PHD (Lee is my doctor, is at Baylor in Houston) This article shows tests and markers that may indicate disorders. They run these tests in Houston. Dr. Lee is one of the premier sites."Ornithine Transcarbamylase Deficiency" by Karl RothLook for the article "I want my brain back" by Sherri Dalphonse. She had more brain damage, but you can relate.Google for more information. I could fill this all up. I am studying the relationship of seizures with OTC now. You see, I am one of the only women my age in the US with so many companion disorders or diseases with my OTC including the siezures without the damaged IQ. It is as you say, there are disconnects that cause the misspellings, misspeaks, wrong word choices etc. So frustrating. YOu know it is happening but you can't stop it. Similar to stroke victims. Do you have headaches 24 hours a day, I do. By the way I understand about the low tolerance. You describe better than me. I had my husband read. He loved. When I get like that, I envision ripping the envaders throat out. But I know that is socially not acceptable. Keep me posted no matter what happens. I am glad to find a friend. in my neighborhood. I am in Texas. :p:p
    Abbydoodle 138 Replies Flag this Response
  • hey girl-yeah.headaches 24/7.if i was not on keppra 500mg twice daily would not be able to live in my skin.have midrin to take 2 evry 4 hrs which does not help.pain mainly left frontal temple area actually feels like vascular pressure or brain swellin in that area.just like when i had meningitis.that crap's worse than havin a kid.thanks for the info.i'm fixin to dig a bit now.have a good day.ur not alone:p
    schalkj21 21 Replies Flag this Response
  • I just returned from an interview with a Social Security Disability doctor. I cannot work any more. Was a type A working 10 to 18 hours high in my career, the bombs exploded and don't have energy to do squat. Basically told SSD that I can't gurantee an employer that* I can wake up in the mornings, especially on time* I will not have seizures at home or at work* I will not fall asleep because of period lethargy or ammonia spikes* I wil not demonstrate cognitive deficits in front of clients such as memory loss, word choice, spelling, * I will not have personality or mood swings including depression or rage.* I will not miss work because of issues related to my main disorder or secondary disorders or diseases.*I also will require that an office be provided that keeps the temperature at 68 and has no florecent lights. We reviewed my history, current life etc. The phsychologist said yep, I was major depressed but all my doctors were aware of it, I was on medications that were meant to help it. He said hopefully that his report would be good for me. I pray so.Basically I am a risk to an employer. Since I had the sugar blast Saturday night, sugar on Sunday and some today (coke and my peanut butter cups) I have had no more seizures or tremors. Of course the entire time blood sugar was okay. Still think it is epileptic or such for the brain. I believe am low on ATP. I use to take injections for it. Can't afford them right now. My brain is a last resource for ATP and the body is stealing from it. My mom is sending me some money. Will try to buy some ATP to help brain. I don't make ATP (energy) because of the Urea Cycle Disorder. Have a good day, I am so exausted from stress of interview, am heading to bed.:(:(
    Abbydoodle 138 Replies Flag this Response
  • hubbie had appt 2day.while there i told pcp my dx status epilepticus and was told i would never be able to drive again even taking meds as directed.SAY WHAT?she suggested to go ahead and apply for social security disabilty.i'm also type a personality(like you)ocd and this really rubs my fur the wrong way.same with me i can't guarantee i won't drop like a rock and shake rattle and roll,the heat intolerance still big problem.but on the plus side my friend.we r officially 2 hot mamas.we rock baby.keep smilin.if i can do it so can u.:ou r not alone.
    schalkj21 21 Replies Flag this Response
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  • Gal you would not believe it. Now it is Tuesday. No shakes rattles or rolls. Watching blood sugars. Had candy before bed last night. I usually wake up with auras--really funky visions, can't walk, headaches, shakes and tremors. Did not. No twitches yet today. Will eat my peanut butter cup tonight. I am going to have to go back to metabolic doctors. Neurologist is on Aug. 18. I am in the middle of Disability process. I just went to their doctor yesterday. Confirmed I have memory loss from seizures and depression from my metabolic disorder and am under medical care. Said he was sending report in and hoped it helped me get the money. I thought that on all the tests I made no mistakes. Last night hubby starting telling me all the mistakes I had done. I cried. Making mistakes is good for disability, but not for my pride. Told him now he could understand why I was paranoid when employers said I did something and I said did not. I always thought they were out to get me.... This has been going on since around 1989. I have gotten jobs, faked it for as long as I could and got fired for being stupid. Yet my IQ is extremely high. My neurologist will not label me with epilepsy. It is nonepleptic seizures. And now I may have found some of the metabolic link to sugar and the brain. I know of another like me, that keeps glucose at her house. When she starts having issues they give her the glucose. Her blood sugar is fine. It is the brain starving for fuel because we are not processing energy right. My metabolic doctor has been treating one part of me for this, but may have stumbled on to other part. Because over weekend he said did not know what caused seizures but patients were having them. Hey keep the magic peanut butter cup or coke for an emergency loopy feeling and see what it does if you start tremors, shakes, etc. Remember I doubt has nothing to do with blood sugar. Oh. Just in case. As your pcp to give you a blood sugar meter and scrip for the strips and lancets. I do keep track of that every day just to make sure and document that blood sugar is not tied to the seizure stuff. when it gets real high, can go into seizures, coma, and die. Don't want that. I use the Freestyle lite. Take in morning, noon, and night. And when my body starts the twitches and jerks. Hey what part of the state do you live in? We go through sometimes to visit hubby's family. I am in H-town.
    Abbydoodle 138 Replies Flag this Response
  • Oh PS, As doctor how she is sure it is epilepsy? What proves that? Ask her about nonepileptic seizures? Longshot. Fight for not having the label.
    Abbydoodle 138 Replies Flag this Response
  • hello lady-sorry bout test score bein blah but hey they didn't give u cliffnotes to cram 4 it now did they?i get what ur sayin tho it wuld tick me off too.status epilepticus dx cuz died in mid of talk on cell with hubbie,found dead by ems 3-6-08.died again 3-9-08, my baby called ems.put on dilantin and klonopin still with seizures.had another 5-28-08 at an RN's house who said it lasted bout8 min. and i was unresponsive pupils fixed and dialated.keppra the best so far no more biggies since 5-28.have seizures when am brought to er til they iv me keppra then stops.
    schalkj21 21 Replies Flag this Response
  • glad to hear sugar thing workin for u.havin trouble concentrating so takin to long u may be gettin double of this so sorry.we live in pineville.how often do ya'll come thru?it'd be nice to chat in person someday.well, don't be so ******n urself.it's our goofy body parts.let's call it bellydancing,breakdancin or somethin fun.hugs.:)bonnie
    schalkj21 21 Replies Flag this Response
  • Sugar has been working extra fine. But slept late and accidently skipped my seizures pills. I take topamax, effexor, and Trileptal. Twice daily usually. Now tonight I am dealing with feeling of brain being terribly buzzily wired and jazzed up. Had a couple of disorienting spins so far this evening. I know my T and T are for the seizures. The effexor is for my serotonin that is low because of my genetic disorder. And no, we do not have a magic PB cup in house. But my blood sugar was okay, so don't know if pills or missing my candy he he. When they found you were you actually dead dead? I've only been in the coma and hubby has please begged no more. Keep the faith and going to try to slow my brain down without killing it. No Heath ledger tricks. (I know bad joke). I just can't run out this late and get a candy bar. Streets too wild. Hugs.
    Abbydoodle 138 Replies Flag this Response
  • Well as I said I skipped pills and the reeses peanut butter cup. Woke up with severe headache migraine with auras jerks and twitches. Husband had gone to work. My blood sugar was 171. Drove about 5 blocks to Krogers. God was with me. There was a sale on Reeses Peanut Butter Cups -- we will not run out again. Ate one in parking lot like a junkie. Will lay down for while and then recheck everything. Is even difficult to type. Hands keep flopping or jumping up and down in spasms. It would have been one week tomorrow. Am documenting everything tonight for neurologist. I go there tomorrow for PT. Will leave him letter since can't see until Aug. 18. Have already been sending letters to metabolic doc. I wish they would they would stop shaking head and saying they just don't know. Everytime we get one symptom under control another rabid rabbit pops up and races across the country side. Good think I have a good ole Louisiana Catahoula dog that protects me. Regret he is turning 14. He is my best bud. Between him and a lab they always watch out for me. Nobody gets too near to harm. And when I go funky, they stand guard. Hubby said was a little difficult to convince all four dogs to move away from me when I was in full blown seizure and EMS showed up. They weren't growling or aggressive -- they just circled wagons around me and protected the lady who gives them treats and such. God watching over me..:p
    Abbydoodle 138 Replies Flag this Response
  • yep-i was dead as a door nail.so stuck with the label.i had bout yesterday took hot clothes outta dryer (forgot)temp thing.wham bam.hit the floor.almost broke left elbow, hurt left knee.but arm sling very fashionable.my baby said my arms and legs jerking but not like use to.keppra helpin.hubbie said not down but maybe 3-5 minutes.so that's better.no more corpses-cool.i hope you have a good day 2day my friend.another dr's appt 4 me 2day.so i'll chat u later.:o
    schalkj21 21 Replies Flag this Response
  • dr visit 2day got me upped to klonopin 3 times daily instead of 1 x.keppra same.put on luvox for the depress, aggression, irritability.weanin off effexor.no shake rattle or rollin 2day so all is well.hope u have a good one.;)
    schalkj21 21 Replies Flag this Response
  • You are not going to believe what I think I figured out about the Reeses peanut butter cups. They are real high in cocoa butter. This is an oil that is used in some cases to treat seizures. When I eat before bed, I am getting 13 grams of it and fat. Next morning no seizure. The problem is probably long term too much sugar, etc. Wrote my metabolic doctor and will write letter to drop off at neurologist. My visit is not until August 18th. But I go next week for physical theraphy. Will keep you posted. Am back to no seizures this pm. Feels good.
    Abbydoodle 138 Replies Flag this Response
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