Siezures

[gigantor98]

I wanted to post my story of how I came to know this disease. 3 years ago on New Years Eve I was in the hospital for uncontrollible DH. I had DH for the entire month of Dec of 06 and finally had to go to the hospital b/c I was so dehydrated. Well to my ultimate shame, the ER trip was terrible. I had no privacy for this matter and was given 8 lomitals along with 12 dosase of Keopiptad and nothing was helping. So they admitted me. For another 3 more days I kept this up and they ran test after test while I was getting my fluids back via IV. 4 days in the hospital over 100 marks on the dry erase board for my DH and a colon scope later they said it must be a virus.

Well after I was released from the hospital I was doing better with the dh it was not happening everytime I swallowed so I thought I was doing better. I did not know that it was not normal to have DH everytime you ate. I blamed this on my age and 3 kids under the age of 5 at the time and lived this way. I was not in any pain and from where I come from you don't complain unless your arm falls off. So I went on only to see the doc in Jan of 08 to find out I was low on iron. I blamed this on my heavy periods and again said it is b/c I had kids and my age of 31. My doc was really concerned and sent me to my OBgyn doc where he increase my snythoid levels and told me to take a pregnancy vitiam to boast my minerals. So I did all the while my extreme tiredness was getting the best of me. I could not make it thru the day without a 3:00pm nap for 45mins only to feel like I was hit in the head with a brick. I again just thought it was b/c of kids. I had never been stressed out other than the usual kid sticking gum in the dryer to see if it would last longer or the other falling out of the cherry tree to pick the best cherry for mommy. I could not understand why I was so tired but did not complain about it, was just thankful that I was a stay at home mom so I could get the nap at 3:00pm. The frequent headaches I was getting that was so bad I would get sick on my stomach, I thought it was from not getting enough rest even though I would sleep from 9:00pm-6:30am than go back to bed at 7:00am to wake up again at 9:00am and get the nap in at 3:00pm. I did not think than that anything was wrong I just thought my sinuses was giving me troubles. I blamed these headaches on sinuses and did not know they where actually migranes.

Than it happened. June of 08 my father came to pick me up from my home b/c I was having a major problem. My day started like any other and I woke with a mild headache and usually I knew by the end of the day it would get worse. I was watching my kids and made up my mind that I was going to take in a good book and not do any of my normal chors for the day. By mid morning of reading my vision went really blurry. Never had that happen before. My headache went away by 8:30am that morning only to return with all of its might at 11:15am. The pain was so bad I thought I had a hammer stuck in my head. I was trying to get my kids thru lunch but was having a hard time standing. When I finally called my mom at work she said my voice was so different that it did not even sound like me and I thought I was talking normal. It scared her enough to send my dad and some help for the kids. My dad had to carry me to his truck. Now this is funny b/c I am 6ft and 145lbs. and my dad is a little under 6ft and is in his 70's so you can imagine the comedey there.

On the way to the er I felt a tightness in my chest so I thought I was having a heart attack. Than the next thing you know my hands and mouth drew up like a stroke and I could not feel anything from my knees down to my feet. I really thought I was dying. I am a Christian and I have always wanted to see Jesus and go to heaven but not that day. I was so scared and I know that in heaven everything would be wonderful but I did not want to leave my 3 kids without a mother and my husband without a wife. God was really speaking to me that day and I was really speaking to him. I kept telling him don' take me know Jesus, don't take me know.

By the time we got to the er I was full blown drawed up and they where doing all sorts of things to me that I had no Idea what was going on. After a few hours they come up with, get this are you ready PANIC ATTACK. Now I would have bought this if I was doing something that would have caused me to panic and trust me the book that I was reading was not that great to cause me to panic. I was totally stumped on that one. They could not keep me b/c this is a very small bandaid station in our home town and they where full of patients so they sent me home. My family Doc. called me the next morning to get me in his office. He knew something was wrong.

My mother had to drive me to the office b/c I was so dizzy and had no strength to even get to the bathroom. My doc sent me to another hospital for test and to stay to be monitored for a few days. Now that is a whole other story about this hospital I was sent to but lets just say I will not return nor would I send cattle to this place. Anyway I had 2 more attacks while I was there and the last one my husband finally seen for the first time and the look on his face is something I will never forget for as long as I live. I knew that what was going on was bad and I could talk some and knew what was going on but could not do anything with my body or control it and keep it from drawing up like it was. After being like this for 25mins at a time I was completely worn out for 24 hours.

I was sent to a Neuro doc who ordered and issued all kinds of test only to tell me that it was stress. So I took there stress pills to leave me drolling on myself in the corner of the room. The next time I had seen my family doc. he knew that he had to get me off of these b/c this was not it either. I was sent back to the Neuro Doc. to run yet another series of medevil test including the spinal tap which left me with the spinal headache. This felt like some one taking a chain saw to the back of my head. I had to have the blood patch to fix this four days of hell. The only thing this doc could do was send me to 2 other doctors. One was an endo doc. and the other was a Neuro doc in Vanderbelt in Nashville Tn.

Vanderbelt told me, after reading my journal, that they think it is seizures being triggerd by my ovulation cycle. According to my findings I was, since June, having these attacks around my ovualtion cycle. They called it catamenial epylpsy. I had never had seizures before that I knew of but that is what they come up with. So they sent me home with seizure meds. They do help. They lessen the side effects of the seizures and I only take them about 4 days prior to ovulation and 4 days after ovulation every month.

It was our local endo doc that found out what was causing all of this. When he said I have a disease called Celiac Sprue. I thougth he said Silly Ass you. Sorry for the dirty word but I really thought that is what he called me. I had to ask him again and than made him spell it and of course I did not understand what this was. When he said I would have to eat a lot of rice and no more bread I thought well thats ok. Oh my!! What a shock. He found it but did not know enough about it to help me so he sent me here to this site and I am greatful he did.

My GI doc says that I will have to be on the seizure meds at least 6months to a year b/c my intestines are pretty messed up. He also told me to start talking about my dh problem everytime a health care physician askes no matter what. He told me that what I suffered with 3 years ago was not normal. I have been gluten-free since the day after Thanksgiving 08 and feel really good. I have been glutened at least one time that I am aware of and it caused me a migrane, and feeling totally depressed. I felt like I wanted out of my body so since that time I have tried to be more careful and do not care if I every eat anohter piece of pizza ever again. I was really blue b/c I would miss this little pizza shop intown but since I took a vitiamin that had gluten in it I don't think of that pizza shop anymore.

I do not have to take that 3:00pm nap anymore and when I get up at 6:30am to get the kids off to school I don't go back to bed. This is the first time in my life that I can remember not being tired. I do not have my usuall headaches everyday either and that is a blessing. My husband says I am more pleasant to be around and the kids agree. Before all of this happened I viewed myself as pretty health. I was not over weight, exercised, ate anything I wanted, and did not worry, and thought I was pretty indestructiable. Now I know differently. I look back over the past 3 years and have wonder just how long have I really suffered from this and not known it.

My youngest daughter has been tested and has a neg. test for celiac disease and I am waiting on the results for the other 2. I pray they don't have this b/c it is a lot of work for me to feed myself let alone them. My family has been supportive but they still don't get it. My diabetic mother-in-law thinks I can measure my gluten intake like she measures her sugar intake. Life has not been happy ever after since gluten-free. I have had my pitty parties from time to time but only to myself. The most difficult time about all of this is when the comunion plate is passed around every Sunday at church and I can't have it. I know the cracker tastes bad but it is the part of breaking bread with my Lord and remembering him. I keep forgetting to take my own bread with me. When you are getting 3 kids under the age of 7 ready for church on a Sunday morning you go through hell before you get there. It truely is snarling and nashing of teeth in the Van ride to church. Anyway, I know my Lord understands but I did not realize just how much I had taken for granted everyday things such as these. No you are not diagnosed with cancer, but you are diagnosed with a life threating disease that consumes everything about you. People just think that it is an allergy, or just change your diet and you will be fine. It is not that simple and with all of what has happened to me over the past year I feel this ride is going to have its ups and downs.

I just pray that we have a better 2009 than 2008. Yes the economy sucks right now and war is going on but I have something far better than a brand new pair of shoes or you newest car and that is another day with my family. I am very gratefuly to the Lord for giving my life back it may be a new one now and not what I had planed but at least I have my husband, kids, and friends to still enjoy. Thanks for this site and thanks for letting me vent.

[ravenwoodglass]

Glad you found us.

One thing you could try to take a bit of the cooking stress away is to do as many meals that are naturally gluten free as you can. Things like stews, rice, meat and potatoes etc are naturally gluten free. There are mixes for pizza dough that even gluten eaters like. My favorite is the Gluten Free Pantry's French bread mix. I use a bit less liquid and stick it in the fridge so it is less sticky to spread but once you get used to working with it the deep dish pizza crust it makes is really good. Sneak one in on the family some night. You might be surprised. Ideally gluten eaters should consume it outside of home but many are successful letting them prepare their gluteny stuff themselves as long as they wipe up the crumbs. Be sure to read as much as you can about ways to be safe in the home and the stuff you need to replace.

The diet is hard at first but, as you are learning, the payoff in how we feel is well worth it. I am so glad they were able to figure this out for you and that you are on your way to healing. Sublingual B12 will help a lot with the nerve function and healing. If you are not yet taking it you might want to add some in.