back on my meds :(

[pammie]

hi
went to my neurology appointment today and feel like i have been forced back on to my medication.
I came off my epilepsy tablets last october as i felt these may be a contributiong factor to my misscarrying. But now am 22 weeks there trying to convince me that it is safe to go back on the medication.
in the first trimester the tablets can cause deformaties within the child, but there saying now the child is fully formed it wont effect him, (although there is no proof of this)
but part of me still feels that if where advised not to smoke drink or do drugs as it harms the grownth of the baby then surly the medication could cause damage.
I put this to the neuroligist (3 of them against me) and one was particular snotty and said well if you would rather have a fit and die then so be it,
the other 2 where a bit more supportive and said that there are things they can give me during labour to stop me fitting if i dont want to take my tablets but as you can gues there was always a but we know better.
the horrible one was even trying to say i was a stupid girl for coming off my meds as there is no proff the meds cause miscarrage, one doc stuck up for me say that it was my personal experience that counts and everyone is different.
my point was when am on the meds i loose babies am not on the meds and i am carrying fine thats all the proof i need

Feel so disgruntled and upset after appointment especially since my husband is away on business and i had to go alone felt like i was at school getting told off by a teacher.

thankyou for reading my rant i just needed to get it off my chest

PAm xxx

 

[kmac]

That's terrible!
Have some hugs
What a shame your OH isn't home to make you feel better.
I understand your views on the meds, and if they can keep a close eye on you then I say stick to your guns - you know your own body.
I'm scared to even take a paracetamol!!
xxx

 

[pammie]

thanks kmac.
am the same as you with the paracetamol, doc has told me to take codine for the SPD i have but i have yet to touch them,
am just doing as much research as possible on the meds before i take them up again. but really do feel presured into taking them and that am a bad person if i dont (the whole you may die comment just wont go away)
thanks for the hugs i need them
xx

 

[lisaspoon]

awwww pam
sorry they are being such idiots... I would do your own research about the medications and make your own mind up....maybe even consider getting another opinion??

 

[rach]

hun dont let them bully you into something you dont want to do
i dont know anything about this type of medication but why not have a chat with your gp or midwife and explain all your worries and get their opinions do a bit more research and see how you feel at the end of the day its your body your baby and you must decide what you think is best maybe get in touch with an epilepsy support group they could put you in touch with other mums who have been in your situation xxxxxxxxxxxxxxxxx

 

[mary70]

my sister in law took her epilepsy medication all the way through both her pregnancies hun and both her children were fine

 

[Bexie]

Hi

One of my friends who suffers with epilepsy had her first child last September and she took her medication all the way through her pregnancy. I'll speak to her to see if she was still on the same doseage and so on. I won't see her now until next week, but if I found out any different I'll let you know.

B x

 

[pammie]

thanks for all your help everybody, after looking into it am a bit more comfortable about going on my meds i just need to get round to picking up the repeat perscription.
hope everybody is doing well
Pam xxxx

 

[nori]

Hiya hun,

I dont have epilepsy but am also on long term medication throughout pregnancy (for crohns disease) I think the medical "experts" see it as making sure mum is well cos if you arent well then the baby doesnt stand a chance. I did consider coming off everything but the risk of flaring was so much higher than the risk to the baby. Like yourself, i hate the fact baby is probably getting even a tiny bit of my medication (even though its considered safe) and i now dont ever touch anything else like paracetamol unless totally necessary.

Its not ideal, but just make sure you look after yourself. As one of the other replies said, you know your own body better than anyone so do what you feel is right. I have a feeling my crohns is just holding out and thats on the meds so i think for me to come off them would be very silly.

I do feel for you hun, having a long term condition sucks (especially when you have your LO to consider!)

Claire x

 

[pammie]

thanks nori

you are completly right in what you say for baby to be fine i have to be fine and the further in my pregnancy goes the more prone to drop seizures i am so it makes sence to go back on the medication.

hope your crohns desiese stays uinder control i know thats not a nice thing to have as i use to work in the gastroenterology department of my local hospital (its true what they say people who work in the medical profession are the wost patients hehe) keeping everything crossed for you that everything atays fit and health for you.

Pam x

 

[nori]

thanks nori

you are completly right in what you say for baby to be fine i have to be fine and the further in my pregnancy goes the more prone to drop seizures i am so it makes sence to go back on the medication.

hope your crohns desiese stays uinder control i know thats not a nice thing to have as i use to work in the gastroenterology department of my local hospital (its true what they say people who work in the medical profession are the wost patients hehe) keeping everything crossed for you that everything atays fit and health for you.

Pam x

aww thanks hun.. lucky you working in the gastro department! Its like my second home at times!! Which hospital are you at? I hope you stay well too and your meds keep everything under control. Im just over the moon that dispite what our bodies go through we can still make a little miracle! Makes it all worth while!

Claire x

 

[pammie]

hi claire

I worked in Aintree hospital in liverpool then moved to the womens to work on the gyneacology department and now am working in critical care.
well you know what they say variety is the spice of life hehe.
I think the human bodies are amazing, some of the things people go through and come out the other end and are reasonably ok is just amazing

take care of yourself

PAM

 

[Chrissie77]

Hi Pam,

I'm Bex's friend that she mentioned in the earlier post. As she said I had a lovely baby boy just over a year ago. I chose to continue with my meds, Tegretol ****** 400mg am - 600mg pm and Gabapentin 600mg am - 900mg pm - also clobazam when required. I chose to carry on taking them from medical advice (Walton Centre Liverpool and my local anti natal services), from what I researched and how I felt. I was monitored very closely; having scans every two weeks and blood tests to check the levels of drugs in my system. All my tests… Downs, spinal bifida etc came back low which also reassured me. I also have status epilepticus, where your body can’t stop generalised seizures – so that definitely have an effect on my decision. As you feel it’s the wrong thing to do to take your meds, I felt it was the right thing to do, but you must remember that I haven’t gone through anything that you have – I haven’t had one let alone three miscarriages and can’t imagine how devastating that must feel. Also I think Tegretol is one of the drugs which have lower risks, but there wasn’t much research on Gabapentin. When he was born, he had little fits for the first week of his life, but so far that’s all the side effects that he seems to have/had. Now he is growing into a very bright, alert, cheeky little boy . I hope my experience helps you and wish you every luck for this pregnancy.

Chrissie

 

[pammie]

hi chrissie
thanks for that, i have looked in to my medication and the carbamazipine tgratol ****** does carry the lowest risk out of all the mediactions and it was just the previous misscarriages that made me more aware of what was going in and out of my body, as the doctors said there was nothing wrong with me i felt there must be another influence causing these misscarriages, my main thought was that my medication does cause birth defects and there was a chance my babys where being effected by this and causeing the misscarriages. there are probably a million and one things i could have picked out, (only slightly neurotic hehe)
you are on alot more medication than me as am only on the one and am not sure if i can stop genrelised seizures as i have petit mall with occasional grand mal and when pregnant i suffer drop seizures (no warning just me on the floor).

My worry has moved more now towards the labour if i get short of breath or pant i tend to have a siezure and they said they will give me clodazam during labour if i need it, but am also suffering symphis pubis dysfunction so am worried about if i need a cesarean would i be put out to sleep or wake (all due to the medication) i have asked questions but the main answer i get is it all depends on the day there has been no solid answers, and since i have got to 20 weeks my regualr scans and appointments have stopped and so am not measured as closely i have to wait till december to see my consultant again where am sure all my pent up anxiaties will just flow out (a bit like now hehe)

I am currently on a regime to re introduce my medication ( I also attend walton neurology ) my neuro doc did say if am seizure free its up to me he understands what has been going on, but has now rang me up and asked me if am deffinalty starting my meds as the drop seizures may begin soon, unless am one of the lucky 60% of women whos epilepsy improves when pregnat.

thankyou for sharing your experience with me it has helped put my mind at ease
Pam xxxxxxxx