The Hardest thing to Hear

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Comment by Tammi Zavardino on October 31, 2012 at 10:40am

Jordan I get those complex migraines also and mentioned it to my doctor who put me on a new medicine to help but I know that stress is a big factor and it also has to do with my eyes and if I am out in the sun without sunglasses I will get a migraine so when I was told my eyes were getting worse and had to get glasses I also had the transition lenses put on and this helped but I also try not to use my eyes to the extent of overtiring them which also helps keep the migraines from happening. I wish you the best

Comment by Jordan Bomse on September 23, 2012 at 12:32pm

I have done my homework. For me, it was proven to be complex migraines. I know my family history and that my mom has really bad headaches along with my grandfather and cousin. I am a healthy eater so it is little to do with food. Stress is a big factor with me so I cannot get too stressed. I am natural when it comes to research so trust me when I say I have done my homework.

Comment by Jordan Bomse on September 23, 2012 at 12:09pm

I was 12 years old when I was diagnosed with Epilepsy. I had started having really bad migraines that eventually lead to the seizures. Come to find out my mothers side of the family is prone to headaches as my mom, her dad (my grandfather) and a cousin of mine had really bad headaches. I got Complex Migraines and it lead to the seizures. I have been on 3 different medications the one i'm on now (Keppra) being the best one i've been on. I have learned a great deal about living with E through experience and research along with being able to tell people about it when asked. I was scared at first but not so much as time went on. Stress is a big factor so I try to keep the stress down as much as I possibly can. I've had countless people ask different questions and given the same answers or similar at least. Living with E affects me in different ways but depends on which area on how much it affects me. I dont drive because of knowing I can't handle an added stress that I can prevent and taking the bus saves a lot of money. E is just another way of leading life.

Comment by lisa mahar on September 15, 2012 at 10:29am

I am going to try less caffeine and more fresh veggies to see it if makes a definate change but does anyone else seize when they take antidepressants or any type of antibiotic,reason being is that I had gastric bypass and I think I might being metabolizing medication faster which could cause me to seize.Its just a theory but has anyone else seized while being on antidepesents or antibiotics.

Comment by June McGlamery on September 13, 2012 at 12:19pm

I did switch to decaf coffee. Since then I have noticed I do not get as many complex or petite seizures. I have also been eating more raw foods. Grapes, fresh green beans, asparagus, spinach, all fresh. I am trying to eat more fruits but hard to digest due to the gastric bypass.

Comment by June McGlamery on September 12, 2012 at 7:25pm

Well now that I have had my 2nd gms I know that it isn't a fluke. The last one I did not go into see a doctor or call 911, I still can't bring myself to do that after emts calling cps on me, thinking I was some kind of drug addict. I know I should since I am not on meds yet for the seizures. I am just so upset with society assuming things. I know one day at a time. 

Comment by lisa mahar on September 8, 2012 at 2:47pm

I want to applaud all the survivors of this disease and that i will never ever diminish your experience or your pain.My theory is it takes one to know one and if I am needed to help anyone for any reason just a shouldier to lean on I will be more than happy to be that for anyone.Yes I have been there and done that and my saying is< THERE BEFORE THE GRACE OF GOD GO I> and all of us are as important as the other and this should be a place where pple should get advice share their experience and maybe make a friend or two.It would be my pleasure to hear you and in return pls I would like for your to hear me for this disease can have one good thing come out of it. Is that we can share and hopefully repair our lives to have better quality and direction.You can never have enough friends.

Comment by lisa mahar on September 8, 2012 at 2:04pm

I remember after a very bad seizure complicated with double phuemonia waking not remembering pulling all of my I.Vs out blood all over bed and calling home crying pls I need my medication.The woman next to me who had C.O.P.D was a nurse for 25 yrs and was hospitilized held my face and said 15 times lisa,lisa in low tone lisa look at me focus look into my eyes and it eventually worked and i made a mess I.Vs veins were blown bed was soaked and the worst was not remembering calling my children begging for my meds.I want to say to my kids I am so sorry for I  should be taking care of you not vice versa.

Comment by lisa mahar on August 19, 2012 at 5:15pm

Doctors act like its no big deal even though you are waking up in hospital or at walmart trying to bit my daughters leg and had a gash on my head yea i know no big deal or when you fall in the shower from seizure and sprain your neck c6 and arm yea i know no big deal.I hope next time it wont be God saying its no big deal because it is.Its my life

Comment by Genie Goodrow on August 15, 2012 at 1:00pm

At 53 I have been diagnosed with partial complex.  That was in March of this year.  It has scared me more than my other medical problems including heart disease and having had quadruple bypass surgery when I was 45.  My aura is that I feel like I cannot swallow and that my throat feels like it is closing.  I guess my repetitive motion is I keep rubbing my throat.  I know I have what I called mild ones pretty often as we are still getting medications right.  And then there are those I call hard ones.  The ones that it takes quite a while to recover from.  And now I am having hard cluster seizures.  The first two I had I went to the ER.  I was put on a bed and left to sleep off what they called "medication problems."  No one even thought about a seizure.  I went to see my doctor and I was having one in his office.  He did a brief neuro exam and had his nurse bring me right to the hospital as a direct admit.  An EEG was done immediately.  It showed scarring in the right temporal lobe. I was started on Depakote.  I saw a neurologist also and he, well, he just doesn't cut the mustard for me.  I had another hard one and went to the hospital and was admitted.  I was given IV Depakote.  The depakote went okay for a while and then it started severely messing with my sodium.  I was taken off that and put on Keppra.  It has been holding me pretty good.  I have been to the ER twice in the last 2 weeks as the clusters wouldn't stop.  I had an ER nurse then and then last night when I went in tell me I wasn't having seizures.  I became livid!  I have one daughter who is an RN and one who has her PhD in pharmacology is married to an MD and who will herself become an MD in about a year.  They are not getting this epilepsy stuff.  I am trying to be patient.  I am trying to teach them and I am quite simply drained and frustrated.  I live alone but am applying for a service dog through Paws for Cause.  I have been on disability for a number of years now unrelated to the epilepsy.  My world now goes upside down so fast.  And well, my moods with them, I get very agitated.  I wouldn't with this on anyone but glad to see there are others like myself.  Genie

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