Thalassemia and Sezuires / Epilepsy

Hello again...!

Hope everyone is well and in the best of spirits...?!?!
I had a small question that I’m I would love to get an answer too...
Does anyone know anything about Thalassemia Intermedia and partial seizures?

My HG is normally between 7.8 and 8.7 and I’ve developed these partial seizures when I was 19 years old.
I used to get full blown generalised seizures during sleep but those have now subsided and I only get partial ones.
The partial seizures are short lived and last about 25 seconds - I get tired after them but recovery period is usually quite short.
They happen in clusters of about 2 sometimes 3 a day every week to two weeks. So I can go without anything for about 2 weeks at a time. Sometimes even longer.
I've seen a neurologist about my issue and he is keen to get me started on Keppra which is an anti-epileptic drug as he has seen slight abnormality in one EEG.
All my previous EEG's and MRI's have been clear. My concern really is can these seizures be because of Thalassemia and low HG...?

The reason I ask is because my haematologist told me that he doesn’t really want me to take Hydroxyurea or any other form of treatment right now because I’m doing just fine.
He said these are treatments we can use should your Thalassemia get worse and begin to affect you. Presently I feel fine with the above HG and I can get on with my day just fine.
If these partial seizures are caused by the low HG, should I try the Hydroxyurea before taking Keppra?
If there are no known links between Thalassemia / low HG and partial seizures I really would like to begin Keppra to rid of these partial seizures.
I've heard that Keppra is a very effective drug and after around a year you can come off it should it control the seizures well and become seizure free.
At the same time, I don’t want to take it if the treatment is really just having to bump up my HG for example as these seizures are due to low HG or other Thalassemia related issues.......

Can anybody help....?

Many many many thanks..
Raf

I am not the right person to answer your question so we should wait for the right people. 

Hi Raf

Actually i don't have answers to your questions but there are two important comments on your post.

First the possibility of taking hydroxyurea should be fully investigated cause it really can help in raising your HB

Second, when i was in Singapore and while talking with doctor Ali Taher from Lebonan ( American University of Bieruit), he mentioned that they are working on a study that showed that anti-epileptic drugs (didn't mention certain names) increased the levels of fetal hb in thalassemia intermedia patients leading to an increase in the total Hb

I think it will be a good idea if you can contact Doctor Ali and ask him about any relation between epilepsy and thal or there is no relation at all. He is a very helpful doctor. His email is ataher@aub.eu.lb

hope this helps

manal

Although I have never found any article that suggests any connection between thalassemia and seizures, I have heard several reports from thals (minor and intermedia) who do have seizures. It may just be a coincidence, as a certain percentage of the population has seizures and thals would be part of this percentage, but I do believe that this needs further investigation. Regardless of the cause, you should probably try the medication. It could save you from possible injury and put your life back to normal.

Long time ago, my elder bro who was Thal Major experienced seizure like symptoms and he was wrongly diagnosed by an experienced Neurologist to had Epilepsy  . Then he was given Epival for long time but that didn't solved anything. Also i have read and heard that anti-epileptic meds hut liver bad (plz discuss with your doctors).

Then suddenly i started to have seizures (conscious and unconscious) and what finally came out was the culprit was sudden drop in calcium. Since then, i am on regular calcium and Vit-D intake. This has worked for me.

But one thing i have experienced that when i got too sick (back in 2005) when i had fever and diarrhea for a month, i had 2-3 seizures and i was on calcium carbonate injections then. Also i have seen many Thal patients when going through sickness, their calcium drops.

I hope this info is of any help to you.

Hello Andy,

My baby has thalassemia and seizure as I inform you earlier.She is now continuing phenobarbital 5 ml twice a day.Doctor advice her for continuing upto 2 yrs after her seizure.It will be complete next year May.Is it necessary to take extra calcium and Vit-D for continuing phenobarbital Please advice.Is phenobarbital reduce calcium?

I am also worried for what will be the result after stop the medicine next year.Is it not completely curable? After stop to take phenobarbital then is there any chance again seizure.Please help...

Please reply Andy...

Does the child still have seizures?

Her first dose was started when she was 21 days old only and stop it after 2 months but 21 days after stopping again seizure raised then Dr. advised to continue Phenobarbital for 2 yrs 5 ml twice a day.Still the course is continuing and it will be complete on next yr May 2016.After May'2014 she have no seizure....

It could save you from possible injury and put your life back to normal.

Hello Andy,

Taking medicine for seizure help to protect from possible injury but is it repair the previous injury? If not then how the patient will be normal in life?

Hello Andy,

It's been a long long time mate.
I moved out of the country for a few years to work and moved back. It's been a crazy few years!
I know this thread is extremely old but I have finally had time to update it.

Basically, after numerous neurologist appointments it was simply classified epilepsy.
Keppra (Levetiracetam) wasn't the AED we tried, we decided to go with Lamictal (Lamotrogine) first.
Lamictal controlled all generalised seizures (Tonic Clonic) but did not stop the partial seizures.
As a result we tried Poly-therapy with Keppra and Lamictal in the hope that Keppra would control both so that we could come off lamotrogine however unfortunately Keppra did not stop the partial seizures so we are now in process of removing Keppra and sticking with Lamictal with the possibility of trying a new AED in a few months times.
As with all AED's changing doses takes weeks and coming of AED's takes months. So it has been a roller coaster ride.

Yikes so many things have happened over the years! Life is extremely interesting!

Anyway I will be back on the forums and posting more regularly were possible.

dq

Welcome back Raf. I'm curious. Do you still have your spleen?

Welcome back Raf. I'm curious. Do you still have your spleen?

Hello Andy,
yep, it's huge but I still got it.

How big?

22-23 cm. However, my last appointment with my haematologist said he felt (hand examination) that it was a little smaller so he's arranged for another ultrasound sometime in April to check and be sure.