As I may have mentioned in the past, I have epilepsy in addition to CVID, and was diagnosed with it just a few years before my January 2010 CVID diagnosis. In 2009 I was put on a drug that seemed like a miracle to me (Trileptal...aka Oxcarbazapine), as it controlled my seizures with minimal side effects.
Fast-forward to May 2011, when I found a case study written by Dr. Charlotte Cunningham-Rundles (the leading CVID researcher in the country) linking Trileptal to the cause of CVID in a patient! I was shocked, confused, excited, and even a little bit heart-sick. I spent many days weighing which disease was easier to live with as I knew that my many sensitivities had ruled out most of the seizure drugs that would work on my kind of epilepsy. The thing that made me decide that epilepsy would be the better disease to have to live with was seeing what some of my CVID support group friends suffer with every day, and knowing that I'm not at that point yet but it could be in my future.
The patient in the case study was taking Trileptal to control pain, and once she was taken off of it her body started rebuilding antibodies within 2 months of stopping it, and had fully recovered except for IgA after 8 months. I then realized that the only way to find out whether Trileptal had caused the CVID would be to stop the taking it, but in order to find out whether my body was building its own antibodies would be to stop my IVIG treatments as well. That seemed like a completely impossible option, as I had just started a new job and didn't see any way I could change seizure drugs without going on extended medical leave while my body and brain adapted to new medications. I tried going onto Topamax with the intent of easing off of Trileptal, but my body didn't like that one at all. After a full week of constant intense nausea and not decreasing the Trileptal dose, my neurologist told me to stop the Topamax, and then he began research to find something else that I could take.
Time passed. In August I went to an allergist at Stanford to help me with my allergic reactions that I experience despite testing negative to allergens (because I have very low IgE due to the CVID). That Dr ran a test of my blood sodium level and found that it was dangerously low (121). He told me to get an emergency visit with my neurologist to get off of the Trileptal, as Trileptal is known for pushing blood sodium levels down in some people. Luckily, my neurologist had found a new seizure drug called Vimpat (Lacosamide) that seems to work well for me, is not on the list of seizure drugs that may cause CVID, and has minimal side effects...another miracle drug...I hope it is as good as it seems.
This is such a great resource that you are providing and you give it away for free.
ReplyDeleteaddict+treatment
NATURAL & EFFECTIVE TREATMENT TO SEIZURE (EPILEPSY): Our son has temporal lobe epilepsy, He has seizure and had a grand mal with rage episode (8 men to hold him down), Our son's seizure is constant throughout the day according to EEG results. We had used several medicine which include: 600 Epilem 100 topolex 150 Epitec X2 Daily Dopoquel and cilift, Keppra, Topomax lasted for about 3 days, but I put an end to that due to my son losing weight and being lethargic. I recently got a natural medicine that handle Epilepsy with no side effect. It is an herbal medicine. William Herbal Product is the only effective treatment I have ever used.
ReplyDeleteNote: There is no cure for epilepsy yet but effective treatment of Epilepsy is available. for more info, contact Dr.William with this Email: drwilly37@gmail.com
HOW MY CHILD WAS CURED FROM EPILEPSY
ReplyDeleteI am sharing this story as a mother. It could help mothers out there who their love ones are going through pains from seizures. My baby girl was 4 years old when she had 7 episodes of epileptic seizures for straight 8 months. Six episodes were with fever and 1 seizure without fever. We used Valparin twice a day but my baby seizures got worse and she developed other health complications. My child was going through pain and I was afraid of leaving her alone to herself so I constantly watched her. Nothing hurts a mother like seeing her child cry and go through pains which is not her own making.
To help my child overcome these frequent traumas, I went in search of medication outside the English medications we had used without result. I was lucky to read in the internet about a mother whose 15 years old child was cured from epilepsy through herbal medication. I contacted the doctor through an email address I got from a testimony shared on the internet. I used his medication for my baby and the seizures stopped. I wanted to make sure that it has cured my child, so we went for EEG and MRI scan all reports showed normal!. My baby girl is 7 years seizure free., and I am happy to tell it to the world, that there is a cure! Don't give up on that situation. You may contact Mohan, where I found a cure for my child via drajaymohanbose@gmail.com
My son was diagnosed with epilepsy at the age of six and had become quite recluse, I was terrified. “His seizures have never been fully controlled as he had grand mal seizures, collapsing and twitching on the ground. As a little kid, I find each one haunting—as if some outside force has taken over his body, leaving me, the person who is supposed to protect him, powerless. It was 2012 and over the previous three years I had spent more time in hospital than out of hospital. This point in time was, looking back, perhaps the low point of my life. After nine years we were out of options. We met with his Doctor to get permission to try a herbal treatment as we needed to end all Conventional Medications. Though we didn't know if it Would make him vomit or become dizzy, or give him a rash or cause some other unpleasant event like some medics he used to take? We didn't know. We’d volunteered to give a trial for him to live a better life. We were confident the medicine wouldn't kill him or hurt him irreversibly, but the prospect still made us nervous. Although family and friends may feel this is a loss of the person they knew, the illness can be treated and a good outcome is possible as it all got better when we started using a herbal medicine for him.
ReplyDeleteMy recommendation to people who are either wondering if they have epilepsy or wondering if a friend or loved one has epilepsy should contact aparajitatan@gmail.com. I think one of our key problems was that we didn't do this in the early days of my Son's illness as we never thought of a natural alternative for him.