Jump to content


Click here to find a mentally interesting date at No Longer Lonely Keep Crazymeds on the air. Donate some spare electronic currency you have floating around The Cloud




Some Crazymeds mugs to help you wash down your meds. Get mugged for at Straitjacket T-shirts for more. 11oz mugs are $13. 15oz mugs are $14.
Mentally Interesting mug
Mentally Interesting mugs
Medicated For Your Protection mug
Medicated For Your Protection mugs
Team Bipolar mug
Team Bipolar mugs
I <3 Wellbutrin mug
I <3 Wellbutrin mugs
Photo

Aed And Vitamin D Deficiency


  • Please log in to reply
23 replies to this topic

#1 MariaM

MariaM

    DIY Trepanist

  • Members
  • Pip
  • 56 posts
  • Diagnoses:Bp2 / rapid cycling
  • Current Meds:Tegretol, Lithium, Seroquel, Ativan as needed

Posted 24 October 2010 - 08:25 PM

I have been taking Tegretol and Lamictal for some while, had a routine blood check at the PCP 1.5 y ago and had a Vitamin D level of 12. Tried to substitute it with 1200 units as order by the PCP and ended up with a level of 11. That was after I raised the Tegretol from 600 to 800 and finally to 1000/day.
After that I took 50000 units twice a week for 4 weeks and my level went up to 48.
I continued to take Vitamin D with 2000 units / day and my level after some months went down to 17.
I did some research and found that patients who take AED usually end up with low levels and deficiency and need to replete.
It makes me concerned though. Does somebody else has this problem? If yes did you get additional tests ( bone density or something else?).
What doctor would be best to follow up on this? My pdoc wrote for the vitamin D but it seems he is in favor of me seeing somebody else for this. PCP or Endocrinologist?
Given the fact that I already tried some medications which didn't work for me I do not think that there is a good alternative to the AEDs right now ( also tried Lithium - too much tremor and couldn't tolerate Betablockers ). But I am concerned about this side effect.
  • 0

Current meds : Tegretol XR 400 mg / day, Latuda 40 mg twice/day, occasional Ativan for breakthrough symptoms, Metoprolol 50 mg for akathisia and blood pressure control. Vitamin D.





Enable Crazymeds to keep ranting about being crazy and taking meds. Donate some spare electronic currency you have floating around The Cloud



Stick to your treatment plan with buttons and magnets. 2.25″ $4 & 3.5″ $4.50 at Straitjacket T-shirts
Pile of Pills buttons at Straitjacket T-shirts
Pile of Pills buttons
Batshit Crazy buttons at Straitjacket T-shirts
Batshit Crazy buttons
Medicated For Your Protection buttons at Straitjacket T-shirts
Medicated For Your Protection buttons
Mentally Interesting buttons at Straitjacket T-shirts
Mentally Interesting buttons



#2 Blue Heron

Blue Heron

    Ready for the MCAT

  • Members
  • PipPipPipPip
  • 2,522 posts
  • Diagnoses:epilepsy, bipolar 2, asthma/allergies, Raynaud's (primary), sensitive to medication
  • Current Meds:lamotrigine, paroxetine, asthma/allergy meds, meds for Raynaud's
  • Location:Midwest

Posted 24 October 2010 - 09:44 PM

Your PCP should be able to advise you about how to make sure your Vitamin D levels are adequate. Lots of things can impact your Vitamin D level: how far North you live, how much sunshine you're exposed to, and your dietary/supplemental intake. Vitamin D is one of the few vitamins that it's difficult to get enough of from a healthy diet, so supplementation is your best bet, since the risk of skin cancer from sun exposure tends to outweigh the benefits of Vitamin D generation caused by sunlight--though this can vary from person to person, depending on family history, where you live, and how fair your skin is. Many Americans don't get adequate Vitamin D in their diets, and how much of the vitamin is needed for good health is a matter of some debate at present.

If you're worried about osteoporosis, the doctor you'd want to see is a rheumatologist. Be aware that the drugs to treat osteoporosis may increase your chances of fractures of the thigh bone, so it's best not to take them for osteopenia (slightly lower than expected bone density). If you do decide to get your bone density tested, be aware that you should try to get repeat tests done using the same machine, and at the same time of year, for consistency's sake.

I take Lamictal, and my bone density in the the "osteopenia" range. The Lamictal isn't the main cause of this, though; in fact, Lamictal is one of the AEDs that tends to have less of an impact on Vitamin D levels. I'm on the thin side, and have taken a steroidal asthma inhaler of some sort or other since I was four years old, and those are much bigger risk factors for osteoporosis.

My rheumatologist keeps track of my Vitamin D levels--but I have a rhematological disease, so this makes sense for me. I take both a Vitamin D supplement and a calcium citrate+D supplement each day, and my rheumatologist said my Vitamin D level is in the acceptable range.

I can't advise you about Tegretol's impact on Vitamin D absorption, but maybe somebody else here will address that. I do know, however, that older AEDs are more likely to cause bone loss than the newer drugs are.

Good luck to you!

ETA: The best way to add to your bone density/reduce bone density loss, besides dietary supplementation, is to take part in some sort of weight-bearing exercise (walking or running, for example) regularly. Bicycling or swimming are good for your muscles, and easy on your joints, but they won't help you keep your bones strong.

Edited by Blue Heron, 24 October 2010 - 09:54 PM.

  • 0

"Note also how we don’t worry about taking medicine for pain the way we often do about taking 'happiness' pills like antidepressants. We worry that by artificially changing our mood we risk not being 'us.' But no one feels inauthentic because he took ibuprofen to relieve his back pain."

--"Happiness and Its Discontents," essay in the New York Times by Daniel M. Haybron, the author of the book, Happiness: A Very Short Introduction.

 

"What's your true self and what's your fake self. Yeah, and where are you on that scale? And how's it working for you? And sometimes you got to go with the fake one, and sometimes faking it 'til [you] make it is the best path, ... I mean sometimes for ... anybody I've known who's struggling ... you got to put your feet on the ground every day and say, you know, don't embrace the struggle, you're going to sink like a rock."

-- David O. Russell, the director of Silver Linings Playbook, in an interview with Terry Gross

(I took out most of the "you knows.")

 

 


#3 musca

musca

    DIY Trepanist

  • Members
  • Pip
  • 23 posts
  • Diagnoses:GAD, Panic Disorder
  • Current Meds:0.5mg ativan 3xd, 15mg remeron

Posted 25 October 2010 - 09:18 PM

I have been taking Tegretol and Lamictal for some while, had a routine blood check at the PCP 1.5 y ago and had a Vitamin D level of 12. Tried to substitute it with 1200 units as order by the PCP and ended up with a level of 11. That was after I raised the Tegretol from 600 to 800 and finally to 1000/day.
After that I took 50000 units twice a week for 4 weeks and my level went up to 48.
I continued to take Vitamin D with 2000 units / day and my level after some months went down to 17.
I did some research and found that patients who take AED usually end up with low levels and deficiency and need to replete.
It makes me concerned though. Does somebody else has this problem? If yes did you get additional tests ( bone density or something else?).
What doctor would be best to follow up on this? My pdoc wrote for the vitamin D but it seems he is in favor of me seeing somebody else for this. PCP or Endocrinologist?
Given the fact that I already tried some medications which didn't work for me I do not think that there is a good alternative to the AEDs right now ( also tried Lithium - too much tremor and couldn't tolerate Betablockers ). But I am concerned about this side effect.


I'm not a doctor:) but I have a firm belief that I can take a lot more vitamin D than the governments upper tolerable limit, which I believe is 2000 IU per day. My level was 64 after 5 months of 5000 IU per day, plus healthy doses of sunshine.

17 is low health wise, but unfortunately its probably not uncommon for people in the US. I wouldn't stress out about a reading of 17 in the short term (6-12 months), but obviously its a cause for concern in the long run if your levels remain in the low range.

I would recommend an endocrinologist over a PCP, simply because they seem to be much more in the know as to healthy levels of blood vitamins. I've never seen one myself, but I've heard that endocrinologists will routinely ask for Vitamin D levels, amongst other things. PCP's know when to prescribe a statin for high cholesterol, but for rare issues (ie. how an AED influences your Vitamin D levels) your visit with a PCP will be like the blind leading the blind.
  • 0

#4 notfred

notfred

    Ready for the MCAT

  • Members
  • PipPipPipPip
  • 4,784 posts
  • Diagnoses:check out signature
  • Current Meds:check out signature
  • Location:USA

Posted 25 October 2010 - 09:31 PM

Vit. D deficiency is very very common. My Vit. D level was 14. I get little sun and wear sunscreen. My PCP does a Vit. D level on everyone, she says. I now take 2,000 IU a day and we will retest soon. I have also had a bone density test due to medical steroid use, which was normal.
  • 0

Dx: Major Depressive Disorder, Attention Deficit Disorder PI, Refractory Insomnia, CSA, Temporal Lobe Epilepsy, Dyspraxia, Tremor
Psyc meds: Aplenzin 522 mg, Abilify 15 mg, Vyvanse 70 mg, Lunesta 6 mg, Levetiracetam 2000 mg, Propranolol ER 60 mg
Other: Fenofibrate, Atorvastatin, Lisinopril, Hctz, Asprin, Metformin, Januvia, Ranitidine, Cetirizine, Nasalide, Montelukast
PRN's: Lorazepam, Alprazolam, Dextroamphetamine, Propranolol, Cyproheptadine, Patanol, Prednisone, Ipratropium, Ondansetron, Hydrocodone, Doxepin
Supplements: Fish Oil 6 g, Multi-vitamin/mineral, vitamin D 1,500 IU

I am in full remission (296.36) from Depression. ADD, insomnia, Epilepsy, and the Pseudoparkinsonian tremor are well controlled.

 

J'ai seul la clef de cette parade sauvage.
Arthur Rimbaud, Les Illuminations, Parade

"I think you are on enough medications." --my pdoc
 

Dr. Frankenstein: You know, I'm a rather brilliant surgeon. Perhaps I can help you with that hump.

Igor: What hump?

 


#5 MariaM

MariaM

    DIY Trepanist

  • Members
  • Pip
  • 56 posts
  • Diagnoses:Bp2 / rapid cycling
  • Current Meds:Tegretol, Lithium, Seroquel, Ativan as needed

Posted 25 October 2010 - 10:42 PM

Thank you guys for your replies, I made my mind up after looking how seizure patients are affected by AEDs.
My level has been low for longer and gives me bad muscle pain and exercise intolerance. First I thought it is the Tegretol that can do that as well but it got better once the Vtamin D level was up. Also it can make depression worse - I know it is probably not the biggest problem in the world I thought I better address it.
So I called the PCP and talked to them briefly, I will go there tomorrow and talk to the MD, depending on how much knowledge he has I will see a specialist for it. Good that I am only half-blind as I am dealing with AEDs every day (in the context of seizure disorders) but I think it is better to have somebody else have a look at it. I will prob shoot for 50 000 once a week - I did consider 5000 units a day after I tried 2000 units /day not succesfully but 50 000 once is probably going to get me where I want to be after raising the level with 50 000 twice for 4 weeks. Hopefully can sustain a level after that, I like to exercise and hate that I have all the muscle weakness and pain even with minimal exercise ( weights and cardio ).
I decided I do not want a bone density test but will get some more blood work ( vitamin B12 which was also low, liver and renal function ).
  • 0

Current meds : Tegretol XR 400 mg / day, Latuda 40 mg twice/day, occasional Ativan for breakthrough symptoms, Metoprolol 50 mg for akathisia and blood pressure control. Vitamin D.


#6 notfred

notfred

    Ready for the MCAT

  • Members
  • PipPipPipPip
  • 4,784 posts
  • Diagnoses:check out signature
  • Current Meds:check out signature
  • Location:USA

Posted 25 October 2010 - 11:13 PM

Vit. D is a stored vitamin so you have to replenish it's stores first, if you are found deficient, then drop back to a maintenance dose. I did 10,000 IU/day for 4 weeks then 2,000 IU/day thereafter. I had a slight but noticeable improvement in mood once I finished taking 10,000 IU/day.

nf
  • 0

Dx: Major Depressive Disorder, Attention Deficit Disorder PI, Refractory Insomnia, CSA, Temporal Lobe Epilepsy, Dyspraxia, Tremor
Psyc meds: Aplenzin 522 mg, Abilify 15 mg, Vyvanse 70 mg, Lunesta 6 mg, Levetiracetam 2000 mg, Propranolol ER 60 mg
Other: Fenofibrate, Atorvastatin, Lisinopril, Hctz, Asprin, Metformin, Januvia, Ranitidine, Cetirizine, Nasalide, Montelukast
PRN's: Lorazepam, Alprazolam, Dextroamphetamine, Propranolol, Cyproheptadine, Patanol, Prednisone, Ipratropium, Ondansetron, Hydrocodone, Doxepin
Supplements: Fish Oil 6 g, Multi-vitamin/mineral, vitamin D 1,500 IU

I am in full remission (296.36) from Depression. ADD, insomnia, Epilepsy, and the Pseudoparkinsonian tremor are well controlled.

 

J'ai seul la clef de cette parade sauvage.
Arthur Rimbaud, Les Illuminations, Parade

"I think you are on enough medications." --my pdoc
 

Dr. Frankenstein: You know, I'm a rather brilliant surgeon. Perhaps I can help you with that hump.

Igor: What hump?

 


#7 dymphna

dymphna

    Ready for the MCAT

  • Citizen Medical Expert
  • PipPipPipPip
  • 4,313 posts
  • Diagnoses:Suck-Ass Epilepsy, Perma-Migraine, Endocrine Hell, Associated Mood Crap
  • Current Meds:LTG 600, TPA 400, CLZ 2, Dostinex 0.5, Zoloft 0.5-1
  • Location:A Mac Computer

Posted 25 October 2010 - 11:37 PM

I've been deficient for a loooong time. For me, it's a combination of long-term AED use (seizures) and an endocrinological problem. Strangely enough, my bone density is excellent. Go figure. Perhaps my bones "got enough" while I was growing up (I lived in a perpetually sunny place). [yes, I know that probably isn't scientifically sound, but it is the only reason I can think of ;-) ]

I take it twice a day and am still deficient, will probably always be deficient, and have just accepted it. I live more than 45 degrees north, so there isn't much hope there...


d
  • 0

Yes, my name really is Dymphna.

 

I'm not a doctor, nurse, pharmacist, or therapist.

I can find you an answer and I won't blow smoke up your ass.

 

St. Dymphna is the Patron for brain maladies.

 

I'm the Enforcer.

 

eqnmrt.jpg

 


#8 Blue Heron

Blue Heron

    Ready for the MCAT

  • Members
  • PipPipPipPip
  • 2,522 posts
  • Diagnoses:epilepsy, bipolar 2, asthma/allergies, Raynaud's (primary), sensitive to medication
  • Current Meds:lamotrigine, paroxetine, asthma/allergy meds, meds for Raynaud's
  • Location:Midwest

Posted 26 October 2010 - 06:56 AM

I would recommend an endocrinologist over a PCP, simply because they seem to be much more in the know as to healthy levels of blood vitamins. I've never seen one myself, but I've heard that endocrinologists will routinely ask for Vitamin D levels, amongst other things. PCP's know when to prescribe a statin for high cholesterol, but for rare issues (ie. how an AED influences your Vitamin D levels) your visit with a PCP will be like the blind leading the blind.


This isn't necessarily true. It depends on what sort of doctor your PCP is, and how interested (s)he is in actually talking with you and solving problems that don't require a prescription. I see an internist, and she keeps track of my blood levels of various nutrients. (It helps that she can see the results of the tests my rheumatologist runs on me.) If you have no choice but to see someone who just wants to write your prescriptions and shoo you out the door, though, you'll be better off going to see a specialist.

ETA: MariaM, my B12 level used to be low, too.

Edited by Blue Heron, 26 October 2010 - 07:00 AM.

  • 0

"Note also how we don’t worry about taking medicine for pain the way we often do about taking 'happiness' pills like antidepressants. We worry that by artificially changing our mood we risk not being 'us.' But no one feels inauthentic because he took ibuprofen to relieve his back pain."

--"Happiness and Its Discontents," essay in the New York Times by Daniel M. Haybron, the author of the book, Happiness: A Very Short Introduction.

 

"What's your true self and what's your fake self. Yeah, and where are you on that scale? And how's it working for you? And sometimes you got to go with the fake one, and sometimes faking it 'til [you] make it is the best path, ... I mean sometimes for ... anybody I've known who's struggling ... you got to put your feet on the ground every day and say, you know, don't embrace the struggle, you're going to sink like a rock."

-- David O. Russell, the director of Silver Linings Playbook, in an interview with Terry Gross

(I took out most of the "you knows.")

 

 


#9 notfred

notfred

    Ready for the MCAT

  • Members
  • PipPipPipPip
  • 4,784 posts
  • Diagnoses:check out signature
  • Current Meds:check out signature
  • Location:USA

Posted 26 October 2010 - 07:26 AM

It is not rocket science to order a 25-Hydroxyvitamin D total volume and then supplement until the test is in the normal range. Well within a PCP's abilities provided it is a simple deficiency.

nf
  • 0

Dx: Major Depressive Disorder, Attention Deficit Disorder PI, Refractory Insomnia, CSA, Temporal Lobe Epilepsy, Dyspraxia, Tremor
Psyc meds: Aplenzin 522 mg, Abilify 15 mg, Vyvanse 70 mg, Lunesta 6 mg, Levetiracetam 2000 mg, Propranolol ER 60 mg
Other: Fenofibrate, Atorvastatin, Lisinopril, Hctz, Asprin, Metformin, Januvia, Ranitidine, Cetirizine, Nasalide, Montelukast
PRN's: Lorazepam, Alprazolam, Dextroamphetamine, Propranolol, Cyproheptadine, Patanol, Prednisone, Ipratropium, Ondansetron, Hydrocodone, Doxepin
Supplements: Fish Oil 6 g, Multi-vitamin/mineral, vitamin D 1,500 IU

I am in full remission (296.36) from Depression. ADD, insomnia, Epilepsy, and the Pseudoparkinsonian tremor are well controlled.

 

J'ai seul la clef de cette parade sauvage.
Arthur Rimbaud, Les Illuminations, Parade

"I think you are on enough medications." --my pdoc
 

Dr. Frankenstein: You know, I'm a rather brilliant surgeon. Perhaps I can help you with that hump.

Igor: What hump?

 


#10 musca

musca

    DIY Trepanist

  • Members
  • Pip
  • 23 posts
  • Diagnoses:GAD, Panic Disorder
  • Current Meds:0.5mg ativan 3xd, 15mg remeron

Posted 26 October 2010 - 06:55 PM


I would recommend an endocrinologist over a PCP, simply because they seem to be much more in the know as to healthy levels of blood vitamins. I've never seen one myself, but I've heard that endocrinologists will routinely ask for Vitamin D levels, amongst other things. PCP's know when to prescribe a statin for high cholesterol, but for rare issues (ie. how an AED influences your Vitamin D levels) your visit with a PCP will be like the blind leading the blind.


This isn't necessarily true. It depends on what sort of doctor your PCP is, and how interested (s)he is in actually talking with you and solving problems that don't require a prescription. I see an internist, and she keeps track of my blood levels of various nutrients. (It helps that she can see the results of the tests my rheumatologist runs on me.) If you have no choice but to see someone who just wants to write your prescriptions and shoo you out the door, though, you'll be better off going to see a specialist.

ETA: MariaM, my B12 level used to be low, too.


Agreed. What I should have said, unless you bring the issue of vitamin D to a PCP's attention, they don't normally bother with Vitamin D tests, or any other vitamin tests, routinely (or at least in my experience).
  • 0

#11 notfred

notfred

    Ready for the MCAT

  • Members
  • PipPipPipPip
  • 4,784 posts
  • Diagnoses:check out signature
  • Current Meds:check out signature
  • Location:USA

Posted 26 October 2010 - 07:12 PM

Agreed. What I should have said, unless you bring the issue of vitamin D to a PCP's attention, they don't normally bother with Vitamin D tests, or any other vitamin tests, routinely (or at least in my experience).



Mine did all that without being asked. Keep in mind the Vit. D test was inaccurate for some time and it is only recently that the test became accurate.
There was some question as to what to measure when assessing Vit. D levels. They have settled on measuring 25-Hydroxyvitamin D total volume.

nf
  • 0

Dx: Major Depressive Disorder, Attention Deficit Disorder PI, Refractory Insomnia, CSA, Temporal Lobe Epilepsy, Dyspraxia, Tremor
Psyc meds: Aplenzin 522 mg, Abilify 15 mg, Vyvanse 70 mg, Lunesta 6 mg, Levetiracetam 2000 mg, Propranolol ER 60 mg
Other: Fenofibrate, Atorvastatin, Lisinopril, Hctz, Asprin, Metformin, Januvia, Ranitidine, Cetirizine, Nasalide, Montelukast
PRN's: Lorazepam, Alprazolam, Dextroamphetamine, Propranolol, Cyproheptadine, Patanol, Prednisone, Ipratropium, Ondansetron, Hydrocodone, Doxepin
Supplements: Fish Oil 6 g, Multi-vitamin/mineral, vitamin D 1,500 IU

I am in full remission (296.36) from Depression. ADD, insomnia, Epilepsy, and the Pseudoparkinsonian tremor are well controlled.

 

J'ai seul la clef de cette parade sauvage.
Arthur Rimbaud, Les Illuminations, Parade

"I think you are on enough medications." --my pdoc
 

Dr. Frankenstein: You know, I'm a rather brilliant surgeon. Perhaps I can help you with that hump.

Igor: What hump?

 


#12 Ophelia

Ophelia

    Would-be Neurologist

  • Illegal
  • PipPipPip
  • 766 posts
  • Diagnoses:Bipolar II, PTSD
  • Current Meds:Lamotrigine, Seroquel, Bupropion
  • Location:San Jose, California

Posted 28 October 2010 - 12:35 AM

[Wow! I had no idea!

Early this year, I was having cognitive problems and enormous fatigue. The cognitive problems turned out to be poorly-controlled bipolar and medication side effects. The fatigue was a low Vitamin D level ( I don't know what it was) - I was taking Tegretol, Celexa, and Wellbutrin.

My PCP suggested 1000 IU of Vitamin D in addition to the multivitamin, the calcium with D, and the milk I was consuming. That did the trick.

I got off those drugs completely and was unmedicated for about four months, then started lamotrigine. So I guess I had better watch out for the Vitamin D problem and consult with the doc.


Later update: just checked my test results from February; it was 25, and 30-100 is normal. The doc didn't recheck, but the symptom went away, and I wasn't too terribly low anyway. Last bone density was normal - which just means "average" - but it turned out it was normal for people my age - and I'm as old as dirt! So I don't really know if it's good or not.

Edited by Ophelia, 28 October 2010 - 12:52 AM.

Ophelia

Current Diagnosis: Bipolar disorder + PTSD
Current cocktail: Lamotrigine 287.5 mg, Seroquel XR 50 mg, Seroqel IR 50mg & PRN as needed, Wellbutrin SR 225 mg, Abilify 0.5 mg, Estradiol 1 mg, Aspirin 81 mg, Tegretol + Wellbutrin + Celexa, Methylin, Provigil, Depakote, Prozac, Pamelor, Dilantin, Tofranil, Elavil, Stelazine, lithium, Haldol, Desyrel, Valium, Nardil, and fish oil (for crying out loud! It threw me into a mixed episode)....
..........and others I can't remember
Supps: Calcium with Vitamin D, Vitamin D, Iron, Multi-Vitamin, Glucosamine with Chondroitin

#13 notfred

notfred

    Ready for the MCAT

  • Members
  • PipPipPipPip
  • 4,784 posts
  • Diagnoses:check out signature
  • Current Meds:check out signature
  • Location:USA

Posted 28 October 2010 - 07:12 AM

I have not seen any evidence Lamictal causes Vit. D deficiency. I do know that a majority of the people in the US are deficient so it is very common.


nf
  • 0

Dx: Major Depressive Disorder, Attention Deficit Disorder PI, Refractory Insomnia, CSA, Temporal Lobe Epilepsy, Dyspraxia, Tremor
Psyc meds: Aplenzin 522 mg, Abilify 15 mg, Vyvanse 70 mg, Lunesta 6 mg, Levetiracetam 2000 mg, Propranolol ER 60 mg
Other: Fenofibrate, Atorvastatin, Lisinopril, Hctz, Asprin, Metformin, Januvia, Ranitidine, Cetirizine, Nasalide, Montelukast
PRN's: Lorazepam, Alprazolam, Dextroamphetamine, Propranolol, Cyproheptadine, Patanol, Prednisone, Ipratropium, Ondansetron, Hydrocodone, Doxepin
Supplements: Fish Oil 6 g, Multi-vitamin/mineral, vitamin D 1,500 IU

I am in full remission (296.36) from Depression. ADD, insomnia, Epilepsy, and the Pseudoparkinsonian tremor are well controlled.

 

J'ai seul la clef de cette parade sauvage.
Arthur Rimbaud, Les Illuminations, Parade

"I think you are on enough medications." --my pdoc
 

Dr. Frankenstein: You know, I'm a rather brilliant surgeon. Perhaps I can help you with that hump.

Igor: What hump?

 


#14 Jerod Poore

Jerod Poore

    Administrator

  • Chief Citizen Medical Expert
  • PipPipPipPip
  • 4,028 posts
  • Diagnoses:Bipolar NOS, Epilepsy NOS, Aspergers, Agoraphobia/Social Anxiety
  • Current Meds:LTG 300mg, TPM 325mg, protriptyline 60mg, MPH 5-10mg, buspirone 60mg EPA 600
  • Location:Saint Regis Montana

Posted 29 October 2010 - 03:50 PM

I have not seen any evidence Lamictal causes Vit. D deficiency.


Not directly, but Lamictal is right behind Tegretol and Trileptal in the photosensitivity sweepstakes, so it could exacerbate any existing reasons for not getting enough sunlight.

This might explain why my already stupid and lazy immune system has been even stupider and/or lazier of late.
  • 0
Jerod Poore - Owner, Founder and Chief Citizen Medical Expert of crazymeds.us
Keep up with Crazymeds and my slow descent into irreparable madness boring life via your preferred social media:

Wear my Straitjacket     Batshit Crazy Blog

I am not a doctor, nor do I play one on TV. No doctor, nurse, pharmacist or lawyer was harmed in the creation of this post. No warranty is expressed or implied. Not valid with any other offer. Void where prohibited.

Current meds: lamotrigine 300mg, topiramate 325mg, buspirone 60mg, protriptyline 60mg, EPA 600mg, methylphenidate 5-10mg, lorazepam 1mg PRN
Past meds (likely incomplete): Abilify, clonazepam, desipramine, diazepam, Gabitril, lithium, Neurontin, Paxil, prochlorperazine, Provigil, Prozac, Risperdal, Seroquel, Serzone, Strattera, Trileptal, Zyprexa

#15 notfred

notfred

    Ready for the MCAT

  • Members
  • PipPipPipPip
  • 4,784 posts
  • Diagnoses:check out signature
  • Current Meds:check out signature
  • Location:USA

Posted 29 October 2010 - 06:01 PM

Not directly, but Lamictal is right behind Tegretol and Trileptal in the photosensitivity sweepstakes, so it could exacerbate any existing reasons for not getting enough sunlight.


Yep, I have direct experience with the photosensitivity.

nf
  • 0

Dx: Major Depressive Disorder, Attention Deficit Disorder PI, Refractory Insomnia, CSA, Temporal Lobe Epilepsy, Dyspraxia, Tremor
Psyc meds: Aplenzin 522 mg, Abilify 15 mg, Vyvanse 70 mg, Lunesta 6 mg, Levetiracetam 2000 mg, Propranolol ER 60 mg
Other: Fenofibrate, Atorvastatin, Lisinopril, Hctz, Asprin, Metformin, Januvia, Ranitidine, Cetirizine, Nasalide, Montelukast
PRN's: Lorazepam, Alprazolam, Dextroamphetamine, Propranolol, Cyproheptadine, Patanol, Prednisone, Ipratropium, Ondansetron, Hydrocodone, Doxepin
Supplements: Fish Oil 6 g, Multi-vitamin/mineral, vitamin D 1,500 IU

I am in full remission (296.36) from Depression. ADD, insomnia, Epilepsy, and the Pseudoparkinsonian tremor are well controlled.

 

J'ai seul la clef de cette parade sauvage.
Arthur Rimbaud, Les Illuminations, Parade

"I think you are on enough medications." --my pdoc
 

Dr. Frankenstein: You know, I'm a rather brilliant surgeon. Perhaps I can help you with that hump.

Igor: What hump?

 


#16 MariaM

MariaM

    DIY Trepanist

  • Members
  • Pip
  • 56 posts
  • Diagnoses:Bp2 / rapid cycling
  • Current Meds:Tegretol, Lithium, Seroquel, Ativan as needed

Posted 07 November 2010 - 06:55 PM

So I went to the PCP and what can I tell you - my nerves got wrecked with her.
After 5 minutes of discussion it was clear that there is no sound understanding of how AED influence the enzymes and any Vitamin D transformation in the human body.
In addition she is very afraid of high doses of Vitamin D. She wants me to take 50 000 units / week , after that a re-draw and stay on 50 000 units once a month or every 2 weeks.
I decided I can't wreck my nerves with more discussions around that topic and will go for a re-draw and after that talk to her again how much Vitamin D I need to keep a decent level of Vitamin D. She had no understanding whatsoever how all the drugs work which scares me somehow but on the other side a PCP probably doesn't need to know this in depth stuff.
  • 0

Current meds : Tegretol XR 400 mg / day, Latuda 40 mg twice/day, occasional Ativan for breakthrough symptoms, Metoprolol 50 mg for akathisia and blood pressure control. Vitamin D.


#17 Jerod Poore

Jerod Poore

    Administrator

  • Chief Citizen Medical Expert
  • PipPipPipPip
  • 4,028 posts
  • Diagnoses:Bipolar NOS, Epilepsy NOS, Aspergers, Agoraphobia/Social Anxiety
  • Current Meds:LTG 300mg, TPM 325mg, protriptyline 60mg, MPH 5-10mg, buspirone 60mg EPA 600
  • Location:Saint Regis Montana

Posted 08 November 2010 - 05:51 PM

So I went to the PCP and what can I tell you - my nerves got wrecked with her.
After 5 minutes of discussion it was clear that there is no sound understanding of how AED influence the enzymes and any Vitamin D transformation in the human body.


As in your doctor has no sound understanding, or there is no sound understanding in general? Because the latter is sort of the case. The consensus is enzyme-inducing AED/anticonvulsants like Tegretol, Trileptal & phenytoin screw with vitamin, but why this happens doesn't seem to be clear. The key word is consensus. The data are contradictory on valproates and modern AEDs like Lamictal and Topamax.

Plus all of the papers are published in neurology journals.

In addition she is very afraid of high doses of Vitamin D.


I can't blame her. Megadoses of fat-soluble vitamins can be dangerous.

She wants me to take 50 000 units / week , after that a re-draw and stay on 50 000 units once a month or every 2 weeks.
I decided I can't wreck my nerves with more discussions around that topic and will go for a re-draw and after that talk to her again how much Vitamin D I need to keep a decent level of Vitamin D. She had no understanding whatsoever how all the drugs work which scares me somehow but on the other side a PCP probably doesn't need to know this in depth stuff.


Her plan seems rather sane.

We have the luxury of not needing to know everything PCPs have to, so it's relatively easy for us to learn enzyme-inducing AEDs leech the vitamin D right out of you, and other AEDs may or may not do the same thing to a lesser extent.
  • 0
Jerod Poore - Owner, Founder and Chief Citizen Medical Expert of crazymeds.us
Keep up with Crazymeds and my slow descent into irreparable madness boring life via your preferred social media:

Wear my Straitjacket     Batshit Crazy Blog

I am not a doctor, nor do I play one on TV. No doctor, nurse, pharmacist or lawyer was harmed in the creation of this post. No warranty is expressed or implied. Not valid with any other offer. Void where prohibited.

Current meds: lamotrigine 300mg, topiramate 325mg, buspirone 60mg, protriptyline 60mg, EPA 600mg, methylphenidate 5-10mg, lorazepam 1mg PRN
Past meds (likely incomplete): Abilify, clonazepam, desipramine, diazepam, Gabitril, lithium, Neurontin, Paxil, prochlorperazine, Provigil, Prozac, Risperdal, Seroquel, Serzone, Strattera, Trileptal, Zyprexa

#18 MariaM

MariaM

    DIY Trepanist

  • Members
  • Pip
  • 56 posts
  • Diagnoses:Bp2 / rapid cycling
  • Current Meds:Tegretol, Lithium, Seroquel, Ativan as needed

Posted 09 November 2010 - 08:15 PM

Hi Jerod,
the PCP is in general not very informed when it comes to antiseizure medication and mood disorder which I do not mind as long as they are willing to refer or consult or at least do a bit of reasonable research.
I asked them if they are able to manage the Vitamin D more than a year ago when my level was really low, I am not sure but I think it was 12. I tried to explain why just 1200 units a day are not going to be enough but it was useless. I did what they wanted me to do and the level went down to 11 when I had to go up on the Tegretol.
After that I took 50 000 units twice a week for 4 weeks and it went up to 48. After short period of time down again so it is clear that I need a higher dose to maintain and it does make a difference for me in terms of muscle pain, tiredness.
Perhaps I am just annoyed and not very patient with those things, I totally admit to it because I am very sure that I will need 50 000 units a week to maintain ( like a lot of seizure patients who are on Tegretol and combinations ).
The reason why I am seeing this PCP is that it is an independent provider and not connected to one of the bigger places or hospitals, I can't afford to have my health information spread all over the place. Perhaps that is the price I have to pay for privacy and I am going take some deep breaths and wait it out.
  • 0

Current meds : Tegretol XR 400 mg / day, Latuda 40 mg twice/day, occasional Ativan for breakthrough symptoms, Metoprolol 50 mg for akathisia and blood pressure control. Vitamin D.


#19 Blue Heron

Blue Heron

    Ready for the MCAT

  • Members
  • PipPipPipPip
  • 2,522 posts
  • Diagnoses:epilepsy, bipolar 2, asthma/allergies, Raynaud's (primary), sensitive to medication
  • Current Meds:lamotrigine, paroxetine, asthma/allergy meds, meds for Raynaud's
  • Location:Midwest

Posted 12 November 2010 - 01:52 PM


Agreed. What I should have said, unless you bring the issue of vitamin D to a PCP's attention, they don't normally bother with Vitamin D tests, or any other vitamin tests, routinely (or at least in my experience).



Mine did all that without being asked. Keep in mind the Vit. D test was inaccurate for some time and it is only recently that the test became accurate.
There was some question as to what to measure when assessing Vit. D levels. They have settled on measuring 25-Hydroxyvitamin D total volume.

nf



notfred, how'd you find your PCP? I was notified this week that our HMO is dropping the doctors' group we go to for our medical care, because of a revenue-sharing dispute with the hospital where they work. I've figured out which hospital to start going to for our care next year, but I'm hoping you'll be able to give me some advice about finding a good PCP without having to try someone out first, then asking my specialists for recommendations. Thanks!
  • 0

"Note also how we don’t worry about taking medicine for pain the way we often do about taking 'happiness' pills like antidepressants. We worry that by artificially changing our mood we risk not being 'us.' But no one feels inauthentic because he took ibuprofen to relieve his back pain."

--"Happiness and Its Discontents," essay in the New York Times by Daniel M. Haybron, the author of the book, Happiness: A Very Short Introduction.

 

"What's your true self and what's your fake self. Yeah, and where are you on that scale? And how's it working for you? And sometimes you got to go with the fake one, and sometimes faking it 'til [you] make it is the best path, ... I mean sometimes for ... anybody I've known who's struggling ... you got to put your feet on the ground every day and say, you know, don't embrace the struggle, you're going to sink like a rock."

-- David O. Russell, the director of Silver Linings Playbook, in an interview with Terry Gross

(I took out most of the "you knows.")

 

 


#20 notfred

notfred

    Ready for the MCAT

  • Members
  • PipPipPipPip
  • 4,784 posts
  • Diagnoses:check out signature
  • Current Meds:check out signature
  • Location:USA

Posted 12 November 2010 - 02:01 PM

notfred, how'd you find your PCP? I was notified this week that our HMO is dropping the doctors' group we go to for our medical care, because of a revenue-sharing dispute with the hospital where they work. I've figured out which hospital to start going to for our care next year, but I'm hoping you'll be able to give me some advice about finding a good PCP without having to try someone out first, then asking my specialists for recommendations. Thanks!



My pdoc recommended her. I have used him for a couple of referrals, with success.

Ask all your present docs for a recommendation.

nf

Edited by notfred, 12 November 2010 - 02:23 PM.

  • 0

Dx: Major Depressive Disorder, Attention Deficit Disorder PI, Refractory Insomnia, CSA, Temporal Lobe Epilepsy, Dyspraxia, Tremor
Psyc meds: Aplenzin 522 mg, Abilify 15 mg, Vyvanse 70 mg, Lunesta 6 mg, Levetiracetam 2000 mg, Propranolol ER 60 mg
Other: Fenofibrate, Atorvastatin, Lisinopril, Hctz, Asprin, Metformin, Januvia, Ranitidine, Cetirizine, Nasalide, Montelukast
PRN's: Lorazepam, Alprazolam, Dextroamphetamine, Propranolol, Cyproheptadine, Patanol, Prednisone, Ipratropium, Ondansetron, Hydrocodone, Doxepin
Supplements: Fish Oil 6 g, Multi-vitamin/mineral, vitamin D 1,500 IU

I am in full remission (296.36) from Depression. ADD, insomnia, Epilepsy, and the Pseudoparkinsonian tremor are well controlled.

 

J'ai seul la clef de cette parade sauvage.
Arthur Rimbaud, Les Illuminations, Parade

"I think you are on enough medications." --my pdoc
 

Dr. Frankenstein: You know, I'm a rather brilliant surgeon. Perhaps I can help you with that hump.

Igor: What hump?

 


#21 Blue Heron

Blue Heron

    Ready for the MCAT

  • Members
  • PipPipPipPip
  • 2,522 posts
  • Diagnoses:epilepsy, bipolar 2, asthma/allergies, Raynaud's (primary), sensitive to medication
  • Current Meds:lamotrigine, paroxetine, asthma/allergy meds, meds for Raynaud's
  • Location:Midwest

Posted 12 November 2010 - 03:39 PM


notfred, how'd you find your PCP? I was notified this week that our HMO is dropping the doctors' group we go to for our medical care, because of a revenue-sharing dispute with the hospital where they work. I've figured out which hospital to start going to for our care next year, but I'm hoping you'll be able to give me some advice about finding a good PCP without having to try someone out first, then asking my specialists for recommendations. Thanks!



My pdoc recommended her. I have used him for a couple of referrals, with success.

Ask all your present docs for a recommendation.

nf


Unfortunately, I've already asked them, and come up empty. My present docs know about the internists in their group, but not the ones at the hospital we'll be going to in January. Any other suggestions?
  • 0

"Note also how we don’t worry about taking medicine for pain the way we often do about taking 'happiness' pills like antidepressants. We worry that by artificially changing our mood we risk not being 'us.' But no one feels inauthentic because he took ibuprofen to relieve his back pain."

--"Happiness and Its Discontents," essay in the New York Times by Daniel M. Haybron, the author of the book, Happiness: A Very Short Introduction.

 

"What's your true self and what's your fake self. Yeah, and where are you on that scale? And how's it working for you? And sometimes you got to go with the fake one, and sometimes faking it 'til [you] make it is the best path, ... I mean sometimes for ... anybody I've known who's struggling ... you got to put your feet on the ground every day and say, you know, don't embrace the struggle, you're going to sink like a rock."

-- David O. Russell, the director of Silver Linings Playbook, in an interview with Terry Gross

(I took out most of the "you knows.")

 

 


#22 notfred

notfred

    Ready for the MCAT

  • Members
  • PipPipPipPip
  • 4,784 posts
  • Diagnoses:check out signature
  • Current Meds:check out signature
  • Location:USA

Posted 12 November 2010 - 03:51 PM

Unfortunately, I've already asked them, and come up empty. My present docs know about the internists in their group, but not the ones at the hospital we'll be going to in January. Any other suggestions?


Call the local ER, ask for a nurse, and get a recommendation for a PCP. A good question is "Who would you send your family to for primary care?" Nurses see a lot of docs in action and network quite a bit. They also hear a lot from patients. All moms docs were recommended by the nurse who lives next door. Mom has the most wonderful PCP who specializes in elderly people. You might want to go through the list of who your insurance will let you see and eliminate any that are not taking new patients. Narrow down the list.


nf

Edited by notfred, 12 November 2010 - 03:53 PM.

  • 0

Dx: Major Depressive Disorder, Attention Deficit Disorder PI, Refractory Insomnia, CSA, Temporal Lobe Epilepsy, Dyspraxia, Tremor
Psyc meds: Aplenzin 522 mg, Abilify 15 mg, Vyvanse 70 mg, Lunesta 6 mg, Levetiracetam 2000 mg, Propranolol ER 60 mg
Other: Fenofibrate, Atorvastatin, Lisinopril, Hctz, Asprin, Metformin, Januvia, Ranitidine, Cetirizine, Nasalide, Montelukast
PRN's: Lorazepam, Alprazolam, Dextroamphetamine, Propranolol, Cyproheptadine, Patanol, Prednisone, Ipratropium, Ondansetron, Hydrocodone, Doxepin
Supplements: Fish Oil 6 g, Multi-vitamin/mineral, vitamin D 1,500 IU

I am in full remission (296.36) from Depression. ADD, insomnia, Epilepsy, and the Pseudoparkinsonian tremor are well controlled.

 

J'ai seul la clef de cette parade sauvage.
Arthur Rimbaud, Les Illuminations, Parade

"I think you are on enough medications." --my pdoc
 

Dr. Frankenstein: You know, I'm a rather brilliant surgeon. Perhaps I can help you with that hump.

Igor: What hump?

 


#23 Blue Heron

Blue Heron

    Ready for the MCAT

  • Members
  • PipPipPipPip
  • 2,522 posts
  • Diagnoses:epilepsy, bipolar 2, asthma/allergies, Raynaud's (primary), sensitive to medication
  • Current Meds:lamotrigine, paroxetine, asthma/allergy meds, meds for Raynaud's
  • Location:Midwest

Posted 12 November 2010 - 09:26 PM

Call the local ER, ask for a nurse, and get a recommendation for a PCP. A good question is "Who would you send your family to for primary care?" Nurses see a lot of docs in action and network quite a bit. They also hear a lot from patients. All moms docs were recommended by the nurse who lives next door. Mom has the most wonderful PCP who specializes in elderly people. You might want to go through the list of who your insurance will let you see and eliminate any that are not taking new patients. Narrow down the list.

nf


Yes, that's a good question to ask, and asking a nurse is a good idea, too. I'm a little leery of calling the ER (Don't they have more important things to do there?), but I think I'll call the office of the rheumatologist my present rheumatologist recommended, and ask to speak to a nurse there. Narrowing down the list according to who's taking new patients is a good idea, too. Thanks.
  • 0

"Note also how we don’t worry about taking medicine for pain the way we often do about taking 'happiness' pills like antidepressants. We worry that by artificially changing our mood we risk not being 'us.' But no one feels inauthentic because he took ibuprofen to relieve his back pain."

--"Happiness and Its Discontents," essay in the New York Times by Daniel M. Haybron, the author of the book, Happiness: A Very Short Introduction.

 

"What's your true self and what's your fake self. Yeah, and where are you on that scale? And how's it working for you? And sometimes you got to go with the fake one, and sometimes faking it 'til [you] make it is the best path, ... I mean sometimes for ... anybody I've known who's struggling ... you got to put your feet on the ground every day and say, you know, don't embrace the struggle, you're going to sink like a rock."

-- David O. Russell, the director of Silver Linings Playbook, in an interview with Terry Gross

(I took out most of the "you knows.")

 

 


#24 notfred

notfred

    Ready for the MCAT

  • Members
  • PipPipPipPip
  • 4,784 posts
  • Diagnoses:check out signature
  • Current Meds:check out signature
  • Location:USA

Posted 12 November 2010 - 09:48 PM

Glad to help. Sounds like you have a plan.

nf
  • 0

Dx: Major Depressive Disorder, Attention Deficit Disorder PI, Refractory Insomnia, CSA, Temporal Lobe Epilepsy, Dyspraxia, Tremor
Psyc meds: Aplenzin 522 mg, Abilify 15 mg, Vyvanse 70 mg, Lunesta 6 mg, Levetiracetam 2000 mg, Propranolol ER 60 mg
Other: Fenofibrate, Atorvastatin, Lisinopril, Hctz, Asprin, Metformin, Januvia, Ranitidine, Cetirizine, Nasalide, Montelukast
PRN's: Lorazepam, Alprazolam, Dextroamphetamine, Propranolol, Cyproheptadine, Patanol, Prednisone, Ipratropium, Ondansetron, Hydrocodone, Doxepin
Supplements: Fish Oil 6 g, Multi-vitamin/mineral, vitamin D 1,500 IU

I am in full remission (296.36) from Depression. ADD, insomnia, Epilepsy, and the Pseudoparkinsonian tremor are well controlled.

 

J'ai seul la clef de cette parade sauvage.
Arthur Rimbaud, Les Illuminations, Parade

"I think you are on enough medications." --my pdoc
 

Dr. Frankenstein: You know, I'm a rather brilliant surgeon. Perhaps I can help you with that hump.

Igor: What hump?

 



0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users




Keep Crazymeds on the air. Donate some spare electronic currency you have floating around The Cloud





Keep up with Crazymeds and and/or my slow descent into irreparable madness boring life. Pick your preferred social media target(s):
Follow Jerod Poore on Facebook
Wear my StraitjacketBatshit Crazy Blog
Crazymeds | Promote Your Page Too
Play Dress-Up with your Imaginary FriendsCrazymeds: The Blog


Just a few designs from our Crazymeds' Clothes Line. See more ways to let my meds express your feelings at Straitjacket T-shirts. Shirts, hoodies & more, $15-$43. Or search the Amazon for your retail Nirvana.
Batshit Crazy shirt
Batshit Crazy shirts
Mentally Interesting shirt
Mentally Interesting shirts
Medicated For Your Protection shirt
Medicated For Your Protection shirts
Breakfast of Champions shirt
Breakfast of Champions shirts