Can any one please???

[Miss Choccy]

:e:

Hi All!

Yesterday I finally recieved the letter about concerning what happened during the appointment I had with my neurologist, on November 3, 2010.

I had some blood tests done - quite a few - going by the number of vials (4 to 5 I believe they took). One of the tests they did was to test the level of vitamin D. In the letter today it says that I'm am deficient in vitamin D - level 17. Does any one know what level are considered to be the normal or okay levels of this vitamin? And if so, where can you find such information? If you can help me with this information I be most grateful.

In the letter it says that my neurologist is going to up my tegretol retard to 600mgs twice a day - so it be a total of 1200mgs/day. Was expecting the increase of the tegretol retard but am a bit surprise that it would go up that high. I am currently taking 800mgs/day - 400mgs twice a day. So that be an increase of 400mgs! Although surprised - I'm mostly okay with it - well at the moment that is - might not be when I start doing the increases and reached the 1200mgs!!! If the increase of the tegretol retard causes me to have too many side-effects from it then that could be scraped to dose I can tolerate easily and a secondarily anti-epileptic drug would be added. I am currently okay with this at the moment too - of course - if it does happen - it could be different once I added the new drug. However please note that I would only be adding the new drug if I find the increase level of tegretol retard is causing me too many side-effects or if the side-effects are severe enough that it is better to be on a low dose of tegretol retard and a low dose of the second anti-epileptic drug.

I guess time will tell - should know in a few months time I think and hope!!! Don't know when I be increasing the tegretol retard yet - do have a doctor's appointment (with my GP) on 14 January 2011, so might be then!!! Hopefully will know after the appointment. Will keep you all informed on the above.

I knew that there was going to be changes due to my medication for my epilepsy due to the increased seizures!

Miss Choccy

Susan

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[Minkels]

Hello Susan,

Level 17 is on the low side, but is not catastrophically low. Here's a link on what the test measures, and how you can increase your blood levels of vitamin D. You may also want to work with a nutritionist on this so you ensure that you get the right amount of vitamin D for your age, overall health, and so on:

http://www.labtestsonline.org/understanding/analytes/vitamin_d/glance.html

I hope that the Tegretol dose increase works out well for you, and that you don't have any issues/side effects from the increase. As you said, you can always call your neurologist and ask him to titrate you back down and consider an add-on medication. I ended up having to do this with Keppra. 1000 mg didn't control the seizures, 3500 mg did, but unfortunately it made me feel and act drunk. It was so bad that my boss actually sent me for drug testing a couple of times while I was on it! My neurologist titrated me down, added Topamax, and is planning on pulling me off the Keppra altogether after he gets me up to 300 mg on the Lamictal XR.

Please keep us updated, and I really hope that the increased dosage of Tegretol helps control the increased seizures.

 

[Nakamova]

The RDA for Vitamin D keeps changing -- scientists don't have enough statistical info to put together a solid, agreed-upon recommendation. That said, the currently-accepted ranges are:

--Desirable: greater than 40
--Low D: 20 - 40
--Insufficient D: 10 - 20
--Deficient: below 10

My PCP basically echoed the above, and said that her patients tended to feel better when there levels were above 50.

 

[Miss Choccy]

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Hi All!

This is an update. But first I like to thank every one whom has replied to my original post on this subject. The information you gave me have proved to be helpful. Once agan thanks. Only wiish I'd thank you all sooner - sorry about that. Please accept my apologies on my failure to thank you all sooner.

I have now upped my tegretol retard to the amount my neurologist wants me to take - which is 1200mgs/day - 600mgs AM & PM. Started upping it on January 14, 2011. On that date upped it to 1000mgs/day - (400mgs AM & 600mgs PM) Took that for two weeks at that amount. On 30 January 2011 I upped it to the said 1200mgs/day. Have had a few side-effects from it - mostly an increase in some of the ones I already get. I have had an increase in dizziness, tiredness, sleepiness, unsteadiness, shaking and headaches. Mostly the dizziness, tiredness nd and sleepiness - as all three I have had daily. Others I have had at times - then they go and comeback to haunt me! Unfortunately doing this increase I've gotten one side-effect that I wasn't having before and that is minor nausea. For some strange reason I be having it mostly on Thursdays - haven't the foggiest idea for that - but other days as well. Any ideas why Thursdays? My diet isn't any different from normal!!!

To be fair, my dizziness spells increased even before I did any increases of tegretol!!! It all started in mid December think due to stress - and I think the stressed triggered my dizzy spells to worsen. And since the increases in the tegretol retard they have worsened even more. Hoping they go back to normal - and am positive they will once my body has gotten over the increases in tegretol retard. Also believe that the other side-effects will go back to normal or in the case of the nausea go away completely once my body has adjusted to the tegretol retard increases. Think the reason why I had stress, which caused my dizzy spells to worsen was because of workplacement I had in November which I didn't enjoy at all - was busy counting down the days for it to end!!! I has now ended - thank goodness!!! I found the workkplacement very tiring and the hours long - 11:30am to 8pm - Monday, Tuesday, Wednesday and Friday. Thursdays was 11:30am to 5:30pm. Only reason why I got off early because of a Beginners' French course I'm taking. Took my awhile to get over the tiredness I experienced while on the workplacement - took to mid-December. Ironically enough - the tiredness end; the dizzy spell started!!! Strange!!!

I am now taking vitamin D - taking it once a week for now on a higher dose for 6 weeks - started that on January 16, 2011. Have two more weeks of taking them at that dosage. After that I be taking them at a much lower dosage twice a day daily. Have a blood test coming up in a few months time to test the vitamin D level.

The appointment I had with my GP went okay - got almost every sorted out there. The only thing I didn't was something I forgot to mention! lol! So, had another GP appointment to discuss that which was on 26 January 2011. You might remember that after a seizure I had in July - I started stuttering/stammering after it - still am - not quite as much - but still do at times - and so he has made an referral for me to see a speech therapist. Don't know when that will happen. Hoping it sometime soon!!! Also at the appointment I had on 26 January 2011 I had to tell my GP that the vitam D I was put on was being discontinued (stopped). He has now put me on substitued with another version of it Haven't started it yet, as I'm still have some of original vitamin D left. Think I be starting the stubsituted version the last 27 February 2011. Do have one small concern about the substuted version as it also contains calcuim and it is - Is it possible to have to much calcuim? If so, is they any adverse effects to having too much calcuim?

Also had an appointment with my epilepsy nurse on February 2, 2011. That went okay. She was happily to learn that I was now taking the vitamin D supplement - as my neurologist had advised in the long-waited letter!

Sorry for this being so long - please accept my apologies for its length. Hopiing I didn't bore you all either. If I have I apologise for that too - and please can you accept my apologies for that too, please?

Miss Choccy

Susan

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[Nakamova]

Calcium is a tricky one -- whether you are getting too much depends on your diet, any meds you are taking, and any other health issues. In general, Vitamin D is critical for the metabolism of calcium, so they are often packaged together. The amount found in most OTC supplements should be fine, but if you are worried, check with your doc.

Most AEDs interfere with calcium absorption, which is why a calcium supplement or calcium-rich diet is often recommended for people with seizure disorders. HOWEVER, calcium supplements can interfere with some AEDs too (just to make things complicated!) Some people with kidney stones are also supposed to avoid calcium.

 

[momof3boys]

I take a calcium/vitamin D pill each day. Im suppose to take two each day, but due to having problems going #2, I cut it back to taking it only once a day. I take that along with a vitamin b Complex. It helps with my Keppra XR.
I also take 1200 mgs of Carbotrol.

 

[Miss Choccy]

:e:

Hi All

I've do eat some dairy products, fish (at times) and many fruits and vegetables. At my first visit to my GP - I was given information on Vitamin D defiency - it was very interesting to read that mushrooms have some vitamin D in them - Yes, mushrooms apparently surprisingly enough. Do wonder why! Do find it quite interesting fact! It also gives information on reasons why people can be Vitamin D deficient and the dosages needed to mantain good vitamin D levels. Plus symptoms of Vitamin D defiency and how its diagnoses and other such information. Quite a good read.

For many years I was taking phenytoin by its brand names - Epanutin while I was on it in the UK and Epanutin while on it while living in Canada. When I was first diagnosed with epilepsy I was living in Canada. Had epilepsy since August 1990. In late February 1997 I moved to the UK and used Epanutin. Was taking off it cause it was giving me dizzy spells - oddly enough never had for many years - then I started to have them after many years of taking phenytoin. When I was coming off phenytion I did try Lamictal but it didn't do anything for my epilepsy as it didn't control it at all so came off the Lamictal. Never got off the phenytoin at that point. Still having the dizziness due to still being on the phenytoin so it was decided to try Tegretol Retard - (know in USA as Tegretol XR I belileve) and have that worked okay for me mostly - still on it and feel much better on it then the last few years I was on the phenytoin (am very happy to be off the phenytoin - I hated it in the end due to the dizzy spells it was given me). I do know that both phenytoin and Tegretol Retard can cause vitamin D defieciency by affecting how the body absorbs the vitamin. So, I do think they have played a factor in me being Vitamin D deficient.

Momof3boys - Correct me if I'm wrong but Carbotrol is a type of carbamazepine, right? Just like tegretol retard, tegretol XR, tegretol CR and tegretol are.

Susan

Miss Choccy

:e:

 

[momof3boys]

:e:

Hi All

I've do eat some dairy products, fish (at times) and many fruits and vegetables. At my first visit to my GP - I was given information on Vitamin D defiency - it was very interesting to read that mushrooms have some vitamin D in them - Yes, mushrooms apparently surprisingly enough. Do wonder why! Do find it quite interesting fact! It also gives information on reasons why people can be Vitamin D deficient and the dosages needed to mantain good vitamin D levels. Plus symptoms of Vitamin D defiency and how its diagnoses and other such information. Quite a good read.

For many years I was taking phenytoin by its brand names - Epanutin while I was on it in the UK and Epanutin while on it while living in Canada. When I was first diagnosed with epilepsy I was living in Canada. Had epilepsy since August 1990. In late February 1997 I moved to the UK and used Epanutin. Was taking off it cause it was giving me dizzy spells - oddly enough never had for many years - then I started to have them after many years of taking phenytoin. When I was coming off phenytion I did try Lamictal but it didn't do anything for my epilepsy as it didn't control it at all so came off the Lamictal. Never got off the phenytoin at that point. Still having the dizziness due to still being on the phenytoin so it was decided to try Tegretol Retard - (know in USA as Tegretol XR I belileve) and have that worked okay for me mostly - still on it and feel much better on it then the last few years I was on the phenytoin (am very happy to be off the phenytoin - I hated it in the end due to the dizzy spells it was given me). I do know that both phenytoin and Tegretol Retard can cause vitamin D defieciency by affecting how the body absorbs the vitamin. So, I do think they have played a factor in me being Vitamin D deficient.

Momof3boys - Correct me if I'm wrong but Carbotrol is a type of carbamazepine, right? Just like tegretol retard, tegretol XR, tegretol CR and tegretol are.

Susan

Miss Choccy

:e:

Yes, Carbotrol is carbamazephine. Ive been on it for well over 10 years now... I believe I was 19 yrs old when i started it. My drs say its not best to stay on it for a long period of time due to it causing liver failure. They want me to have the VEEG first, and then we will go from there with medication steps.