Hi, has someone heard of epilin tablets make your blood thicker? It's just my husband has been taking epilin for his fits for almost a year now. He takes 1200 gr per day. And the other day his GP said his blood is not coagulating well and his cholesterol is very high. I thought may be it's also due to epilin. Any thoughts , suggestions will be very appreciated. Thank you very much, Gina
Hi,
Didn't notice this hadn't been answered....
Sodium Valproate or Epilim do not make my blood thicker. But I am on a lot of other medications as well.
I take 2,000mg a day and its been like that for over 30 years now. You are supposed to regular screening with being on Sodium Valproate, this includes:
Blood tests every 5 years
These are to check your liver, prostate and there is something else.
I had mine done recently, all that showed up was some fat around the liver, which is normal if you are slightly over weight. I would not say I'm over weight just over 13 stone and 6' 1" .
About 5 years ago my blood doesn't clot too easy, it still doesn't now. If a seizure is about to come on I can normally tell, but only if I am at parties and they have those LED laser lights, they increase brain working and goes in to overload, then I get massive nosebleeds. I tend to stay away from parties, disco's, etc.
2,000mg a day is the most Epilim that is given, it can go to 2,500 but doctors normally change it before putting it above 2,000mg in the UK.
Thank you Les for your answer. I just picked up from your feedback that Epilim might affect prostate too? My husband is also having a lot of trouble peeing and pooing especially during night. Could this be due to taking Epilim?
Sorry to hear parties don't suit you well. Same here with my husband. It affects him always badly.
Take Care,
Gina
Hi Gina,
That is quite possible. I do have small particles floating around in the Prostate Gland this was detected on an Ultrasound Scan I had done just before last Christmas. I thought I had Prostate Cancer, the symptoms I had seemed to point to that. I had a word with my doctor about the various ailments I had, trouble with urinating, this could I had the feeling I needed to go but couldn't, or if I did go it was slow and took ages to end.
My doctor said well what do you assume it is, I said it all points to Prostate Cancer. She asked me what did I want checked I said an Ultrasound on the Prostate and surrounding area and possibly a blood test, but that will probably give a false/positive result.
I know you are probably thinking I have a strange relationship with my doctor, most people do...lol It's because in the past with a previous doctor he was treating me for Testicular Infection, and I said I should be checked for Testicular Cancer, considering you have given me anti-biotics for 6 weeks and I still have pain. So, I asked a referral to see an Oncologist and Urologist, which he did straight away and I went directly to A & E, about 2 hours later I was diagnosed with Testicular Cancer, so it was removed 3 days later.
However, back to this Prostate Issue - if I sneeze I feel a sharp pain, but after seeing the Ultrasound Scans there was nothing untoward. My doctor asked the Urologist for a second opinion because she noticed a polyp on the Epidermal, but it was benign and not worth bothiering with. When I had Testicular Cancer that was a different matter, people say cancer is painless, it was not painless at all, it was a dull ache, and I felt 4 polyps myself on it.
So, ever since then my doctor knows I look up various symptoms online, I would not recommend it personally, but when you think your own GP is in the wrong, it is better to get a second opinion. Because I have two sons and a daughter, we've always told them how to check themselves and if worried then see our doctor. Cancer runs on my side of the family, my father died from Colon Cancer that spread to his spine.
I still have the problem with urinating but not as bad as it was. As regards to bowel movement, that I cannot really comment on, I have many problems mostly with diarrhea, or constipation, it varies but a majority of the medications I take cause bowel problems and I have had major surgery on my intestine where over 50cm+ was removed because I was dying from the inside out. Basically, 50cm+ of my intestine was removed because it turned gangrene, but they think this was due to the Testicular Cancer which was done a few years previously.
If he's worried then I would recommend seeing his doctor and going through the symptoms. I am on over 30+ tablets a day, and 6 BoTox Injections every 10 weeks, because my major problems I would not wish on anyone. I am under many Consultants and even they call me the complex case, because nothing is simple with me, even just changing one tablet can have serious effects.
Anyway, I hope I haven't frightened your husband - I have never heard of Sodium Valproate causing problems with the Prostate, but it could be and age thing, I'm 52 by the way.
Hope that helps!
Regards,
Les.
Hi Les,
Thank you very much once again for your reply. It's very thorough and detailed. I'm glad to hear you followed your own instinct and decided to get a different opinion straight away. Fantastic!
My husband is very different to you. I'm the one who is worrying and trying to get things done for him. He is very stubborn and does not like going to medical professionals at all. But according to your feedback his problems with pee and poo does not seem like due to Epilim. Thank you. I was wrong in asking earlier if Epilim thickens the blood. I meant to ask if Epilim thins the blood?
But never mind.
Look after yourself Les and have a good evening.
Thank you very much.
Gina
Gina,
A quick note, I have lost many teeth due to one medication which is normal and a well known side-effect. But I will tell you this virtually on all tooth extractions I have suffered "dry socket", the pain is about 10 times worse than toothache itself. It is caused by the blood not clotting properly, hence it falls out and exposes the jaw bone.
A main reason why this happens is because sodium valproate I think even back then thinned my blood down so the chance of it clotting was very slow indeed. Most of the time I had to return to the dentist and have the hole repacked so the jaw-bone was not exposed which is what gives you the extreme pain.
I have the same problem with blood tests, (when they eventually find a vein!) the blood fires out, and it takes awhile to stop it. Most of my veins blow easily, so me and blood tests dont mix well - I end up with many bruises.
There is a saying about teeth and it refers to them coming and going. When you suffer from "dry socket" it is very painful, two of my incisors I had to have the jaw bone drilled, just to loosen the tooth enough to come out. I don't have that problem now, two main full dentures is better than all the pain I went through over the years.
I am under the top Neurologist and teams in the country. I know them all, I knew the ones before them and I was initially diagnosed by Professor David Marsden of Neurology from the USA and his team. I had to regularly meet up with them in the Queen's Hospital, London every three months. Sadly, Professor David Marsden passed away at a young age for a man, but was well known worldwide. When doctors read my records, they all knew of him but never actually met him, so I normally get asked many questions. Just knowing or being treated by such top people in Neurology attracts many doctors.
I guess I am very inquisitive about things, I cannot be stubborn about going to hospitals, I attend every week sometimes more then twice in a week, because I am under Neurophysiotherapists, Neurologists, Epilepsy Specialists, Pain Management Clinicians, etc. I seen my Physio on last Wednesday, then 4am Friday morning rushed in by Ambulance! You don't get choices it's straight in and being monitored for 6-8 hours! Then back home, and totally knackered for a few days!
Anyway, your welcome,
Regards,
Les.
Hi Les,
Thank you for sharing. I hope you are well and coping fine with all those conditions.
You haven't heard by any chance that infected teeth can cause or trigger fits, have you? Cause my husband is going to get all his teeth pulled out soon in the hope his fits might stop. I don't really know. If his blood is not coagulating well now it will not be easy to get his teeth pulled out?
Thanks Les,
Gina
Hi Gina,
Good question, but I will give you details about many other areas of Epilepsy, which even I was unaware of either. I only know now by asking questions, to Neurologists and Epilepsy Specialists.
Teeth
An abscess is an infection, if the infection is left untreated it can cause irreparable harm or death, it is possible that he could have seizures as a result, and if he does not get this taken care of, he could become very ill and untreatable. This actually a known fact, perhaps not many people know.
Epileptic Seizures vs Functional Episodes
A few other things about Epilepsy Seizures, I'm not sure about your husband because this varies from person to person. Most people have seen other people in a seizure but what they probably do not know is the fact that you can have Epileptic Seizures, this is where the brain basically goes in to overload hence the seizure occurs, however there is also Functional Episodes these are seizures but they do not produce a reading on a EEG, because no electrical pulses are produced. The seizure differs in other ways as well, the patient is aware of the seizure but she/he cannot communicate in anyway, they can hear and see - but unable to tell anyone.
Baths
A person that suffers from any type of seizure should never be left alone in a bath, obvious a seizure could occur. Another reason is never have a stone cold bath or shower or a very hot one, both can trigger seizures - many people do not know this, and it could be fatal.
DFG (Disability Funding Grant)
If you have a bath, and you are on Benefits you can have the bath removed a shower room conversion done, via a DFG (Disability Funding Grant). To get this you need to contact your local council and ask for the Adult Care Team, you need to make an appointment to see a Occupational Therapist, whom will fill out a form for the work to be done, it comes well under the DFG Threshold of an annual grant of £25,000 which is on the Government website.
If you need anything else, just let me know.
Regards,
Les.
Thank you Les for sharing your wealth of information. Thank you very much.
Kind Regards,
Gina
Hi Gina I am Margarets Husband, I have heard of Epilin dont know much about it. My Wife as been on 100mg of Phenytoin twice a day, and as been since 18 years old. she now 80 years old. there was one drug they gave her that she was on as well for over 50 years that was Primedone, very high dosage cannot remember exact. she was taken of this Drug 2012 after lot of problems with balance, and Yellow Jandice.
She as now been suffering from Alzheimers for over 5 years wonder what damage these drugs have done to her, last grand mall fit was in 1987, been totaly controlled since.
God Bless Jim
Hi Margrets Husband,
Just to put a bit of perspective on these two drugs. Basically, Sodium Valproate was the initial drug given to Epileptic Seizures and Functional Seizures, Phenytoin was a drug that came out after.
Scientific tests proved there was no real overall differences between the two drugs, this included number of seizures and control. Diazepam has always been used to bring a patient out of a seizure in either case.
Side effects may differ, but all drugs effect people in different ways - especially when high dosages are involved.
Regards,
Les.
I am on sodium valproate 2400 m.g per Day to control my epilepsy and i have been on them since I was 7 years old and know I am 28 years old and I never had any problems with my blood clotting or anything like that
Thanks Alexander,
My husband was on 1200 m.g but the A&E doctors increased it to 2000 without even consulting his neurologists after he was taken to A&E after couple fits over the week end.
So I presumed may be sodium valproate is not such a strong medication after all which need to be carefully reviewed and prescribed by a neurologist.
Do you think the same Alexander?
Thank you very much for your input,
G
They should not off done this before taking blood test's and talking with his neurologist then increasing his dose by a small amount first you should take this up with your husbands neurologist the next time you have appointment with him hope this is of some help
one other thing I meant to tell you 2500mg Is the highest level of sodium valproate a day you can be put on just so you know
Hi again Gina,
Just a quick note on this...
Sodium Valproate, you state he was on 1,200mg then increased to 2,000mg by A&E Staff & Doctors. This is not the correct procedure for upping Sodium Valproate, and in some cases, it is a strong medication but will cause an adverse effect. So, instead of lowering Seizures it will cause a seizure, or more problems with the stomach.
Staff that can only change this medication by such a large dosage should be either Epileptic Specialists or Consultant Neurologists. An A&E Doctor is not authorized to change drugs by huge amounts, unless they have got permission from a Consultant Neurologist or an Epileptic Specialist.
I would mentioned this to your husband's consultant - they should have a strict policy in place regarding such cases.
For me, to have any changes in medications it must come from the Head of Neurology, not even is team members are allowed to make such changes. Then again, altering any medication I take can have serious effects.
Regards,
Les.
Thank you very much Alexander,
Have a lovely day,
G
Hi Les,
Thank you very much again for your input.
So, you are saying to increase your dose from 300 to 500 mg is not a small insignificant increase, but rather significant amount?
I will try to get through the nurse today and tell them what happened in A&E, I don't think I can get through to neurologist or even to registrar.
Les, do you know if Epilim causes memory lapses and slowing down of your brain? My husband has been taking it for the last one and half years and gradually I have noticed his memory is going down. But since his last 2 fits which happened on last thrursday and Friday I have noticed a significant change in him compared to previous days. He is slower, confusing things, can't remember what happened yesterday and etc...
May be its Epilim's side effects?
Thank you Les,
G
yes it has caused me long term memory loss and remember a good balanced diet can help and plenty of flued
Sodium Valproate along with Epilepsy, even plays with my mind. I have days where I can forget what I done a few days ago, in extreme cases my wife can give me a shopping list of 4 items - by the time I have walked to the car to the shop (which is about 4-5 metres) the list I may have dropped or put in my pocket, the only thing I can remember is the number 4, because it showed 4 items. But in the shop I have no idea what I want, and just pick 4 items I think it was... course 99% of the time, it is wrong. I do have very bad memory problems - that bad now I have to literally write everything down.
Regards,
Les.