please can someone help me

[michelle2262]

I have been on dilantin since 1990. In July of 08 I began to get hives. At first at first maybe once a week, in September every night between 5pm and 8pm the hives would emerge.By October, I started getting them all the time. By November the hives had consumed my entire life.Everyday, All the time no relief. went to my doctor several times. She told me that there was nothing she could do for me. I have been in the Emergency room  many many times hoping for relief. I thought at one time Allegra had been my life saver, however it wasnt. I get medical help through my indian tribe, but what they dont carry in their pharmacy you cant get without paying out of pocket. I cannot afford an allergy test. they cost anywhere from $400-1500.I have ruled out everything I can even going without coffee.I have been on the internet everyday looking for something new I may have overlooked.Is there a test of some sort that I could have done to see if I am allergic to dilantin. I have not had any seizures in many years.this may sound silly but my dilantin has become my security blanket. I am so afraid of having anything happen in front of my 4 children. I would also like to know if changing medications how safe is it, meaning do I stand a high chance of no seizure happening if I were put on another medication?I cant afford anything other than what the tribe will pay for, and at this point they have done alot of cut backs.I dont know how much longer I can handle these hives. I take zantac,allegra and dilantin daily.please help me!!!!!!!

[cloverheart]

Hi Michelle, My son has Epilepsy and was on Dilantin the majority of his "epilepsy life" with wonderful effect. Several years later he developed a rash (not hives) all over his body and started having odd muscle movements also envolving his entire body. The neurologist told me that he had developed an allergy to Dilantin and to never use it again as a treatment. We discontinued the Dilantin while he was in the hospital while introducing a different medication. Sorry it was years ago and I can't recall what the med was. My son has generalized seizures that present as Gran Mals. I know what you mean by the sense of security with Dilantin. I was scared to death with the change. After many tries with many diferent medications and doses he is now on Depakote, Keppra, and Klonopin. He is still not seizure free but he is very well controlled. Many of the pharmacutical houses have programs available to provide you with free or greatly discounted medications. Your neurologist should be able to help you with making that contact. Or if you decide to try a new medication ( with close medical supervision) you can contact the pharmacutical company yourself on line and find thier link to financial assistance. Good luck! Suzan  

[Dr Santos]

Hi,

I'm sorry to hear what you've been through for the past months. Indeed, hives could be due to a lot of causes including medications, foods, pollen, animal dander, latex, and insect stings. Physical factors or environmental factors can also result in the release of histamine such as heat, cold, sunlight, water, pressure on the skin, emotional stress and exercise.

Hives are triggered when certain cells (mast cells) release histamine and other chemicals into the skin.   In planning to switch to another medication, discuss this first with your doctor for tapering and determine which drug is well suited for you. It is not  advisable to discontinue the present drug abruptly since this can lead to more seizures. Take care and keep us posted.  

[peggy64]

I hate you are experiencing this, as I am on Dilantin as well.

Which came first? Your fears or your hives? Think about it, I know nerve problems can cause people to have the hives. Have you been going through some traumatic times or had problems arise?

You are in a difficult prediciment with no insurance, so you will have to figure this out on your own. I know how frustrating that can be because I have gone to the dr for thyroid/adrenal problems and the dr told me, she did not know what else to do.  So I can understand completely what you are going through here.

I guess an option is to switch over to another med that your tribe will supply to see if that will take care of the problem.  When they change meds, they should slowly add in the new med, and then when it has reached a therapeutic level, start discontinuing the old one.

That is the advice I would give to. Hang in there. Pray for strength each day.  Let us know how you are doing.