Fed up and frightened

[Cinnabar]

I really don’t know what direction to go.

The back story.

I have Temporal Lobe Epilepsy and have been treated with Lamictal for many years.

I also have Juvenile Glaucoma, a geriatric eye disease, which I was born with.

Last week I went to see a Glaucoma specialist. Had the whole workup. The results of my Visual Field test showed that I’ve lost my entire inferior vision in my left eye. Naturally, I was very upset.

As soon as I got home something told me to search “Lamictal-Glaucoma”

Finding: Lamictal can “cause” Glaucoma. Wonderful. I’ve had this progressive eye disease since a child. I’m most assured that Lamictal has played a large part as to this new finding concerning my ocular heath.

Had my neurologist, neuro-psychiatrist, this Glaucoma “specialist” read my intake sheet where I wrote that I had Glaucoma and take Lamictal?

Thereafter, I had a session with my neuro-psychiatrist and said I need an alternative medication to treat my Epilepsy.

A conundrum. He said he had to consult with two neurologist colleagues.
He called me a few days later and said that Trileptal was recommended. He warned me that the two main side effects severe suicidal ideations and speech, language problems . Then the list goes on, horrifyingly so.

My question. Why can’t three doctors put their heads together and come up with more than one option?

Then the biggie (which is why I feel even more alone concerning my matter)
My neuro-psychiatrist says that I should read up on Trileptal and that I’m to decide if it’s what I want.

I first thought “great”. He’s no longer saying a med he prescribes is the word.

Then it quickly comes to mind that if I’m affected by the worst side effect, suicidal ideations and off myself, he’s free of liability.

I’m in the process of researching alternative meds (I am not going on this Trileptal. )

From what I’ve read (several sources) the side effects are not temporary but live with you. You’re impaired.

Severe suicidal ideations
Difficulty with concentration
Speech, language problems
Somnolence (we all know we need our sleep)
Coordination abnormality
Gait disturbance (so I’ll not be taking the chance to drive)

A friend of mine from Scotland suggested that I look into Diamox which is mainly subscribed for degenerative eye disease but can treat “some” seizure disorders.

So. Does anyone have med suggestions I can look into?

I’ve had it with doctors. More than ever I realize my getting the best treatment is up to me.

And I need some help here.

 

[Nakamova]

Hi Cinnabar --

Can you direct me to the source you saw that indicated that Lamictal causes glaucoma When I googled, I couldn't find any links between Lamictal and glaucoma, just a query/statement by one individual that was repeated fairly frequently in the results. I searched pubMed and other medical sites and couldn't find any data. I'm not saying there isn't a link (and I know Lamictal causes other vision-related problems), but just wanted to caution you that you might be considering a med switch for no reason.

 

[Cinnabar]

Thank you for taking the time to look into it and for your concern. I'm pretty tired right now and can't find the link. My doctor had trouble finding the connection through his serch engine as well but did come upon a link which proved that Lamictal can cause Glaucoma in a notable percentage of persons. This is why he was very ready to get me off Lamictal.

 

[Kaitybugsmom]

I've been looking for a connection as well and pulled out all the *warnings* that came with the Lamictal script, glaucoma runs on one side of our family. I will keep looking. One of the things on one of the sheets the pharmacist gave us on lamictal in big bold print was that it could cause suicidal thoughts and actions as well as a whole laundry list of other not so appealing side effects. Hopefully we dont run into any of them.
My son takes Trileptal and has done very well on it with little to no side effects. Again, I guess it really depends on the person.

 

[Birdbomb]

I found a link http://www.druglib.com/druginfo/lamictal/side-effects_adverse-reactions/

They used a "catch-all" phrase "visual field defect. "

Special Senses: Frequent: Amblyopia. Infrequent: Abnormality of accommodation, conjunctivitis, dry eyes, ear pain, photophobia, taste perversion, and tinnitus. Rare: Deafness, lacrimation disorder, oscillopsia, parosmia, ptosis, strabismus, taste loss, uveitis, and visual field defect.

And then I found THIS golden nugget...

Binding in the Eye and Other Melanin-Containing Tissues

Because lamotrigine binds to melanin, it could accumulate in melanin-rich tissues over time. This raises the possibility that lamotrigine may cause toxicity in these tissues after extended use. Although ophthalmological testing was performed in one controlled clinical trial, the testing was inadequate to exclude subtle effects or injury occurring after long-term exposure. Moreover, the capacity of available tests to detect potentially adverse consequences, if any, of lamotrigine's binding to melanin is unknown [see Clinical Pharmacology].
Accordingly, although there are no specific recommendations for periodic ophthalmological monitoring, prescribers should be aware of the possibility of long-term ophthalmologic effects.

http://www.druglib.com/druginfo/lamictal/warnings_precautions/

 

[MedicalMarijuanaGuy]

I use a combination of medical marijuana and lamictal to treat my epilepsy. Might want to look into using medical marijuana for both your epilepsy AND glaucoma.

 

[epileric]

Might want to look into using medical marijuana for both your epilepsy AND glaucoma.

According to tests done, it does help glaucoma a bit but not as much as any pharmaceutical can.

Studies in the early 1970s showed that marijuana, when smoked, lowered intraocular pressure (IOP) in people with normal pressure and those with glaucoma. In an effort to determine whether marijuana, or drugs derived from marijuana, might be effective as a glaucoma treatment, the National Eye Institute (NEI) supported research studies beginning in 1978. These studies demonstrated that some derivatives of marijuana transiently lowered IOP when administered orally, intravenously, or by smoking, but not when topically applied to the eye.

However, none of these studies demonstrated that marijuana -- or any of its components -- could lower IOP as effectively as drugs already on the market. In addition, some potentially serious side effects were noted, including an increased heart rate and a decrease in blood pressure in studies using smoked marijuana.

http://www.nei.nih.gov/news/statements/marij.asp

 

[Cinnabar]

Sorry so late...

Kaity: Fortunately I've had no suicidal ideations on Lamictal! Really glad your son can tolerate Trileptal. It really is about hit or miss.

Donna: Thanks so much for researching. Better understanding of its hazards. Had no idea that it binds to melanin.

Epileric: I have looked in Mecial Marijuana and it's a "no go" in NY state.

It's just that I've been doing so well for many years on this med coctail. I remember all that I had to go through for six months to get stabilized. Wish it were just a walk in the park.

 

[Cint]

Hi Laurie,

My neuorpsychiatrist put me on Trileptol several years ago for the depression and I was on it for a year. I eventually had to be taken off it because it lowered my sodium levels too much.
Many of the epilepsy drugs can/do cause depression and suicidal ideations, so every patient needs to ask about the side effects. And all drugs cause side effects, including marijuana.

 

[Cinnabar]

I was warned about the sodium levels as well. But you did well otherwise? Good. I'll have to speak with doc again...

 

[PFunk]

Maybe this is coming a little to late and you have decided what to do, but for what its worth; I took trileptol for three years and it worked great with almost no side effects. In time my sodium levels were to low, so I was given the choice to drink only two pints of liquid a day or to switch meds. Well, I dare anyone to see if they can drink only two pints of liquid a day.

I ended up switching to Keppra which was a mess. After a lot of back and forth, I'm now taking Keppra, Dilantin and Lamictal. I wish I could go back to trileptal. Its suppose to be one of the best for TLE and it was for me.

As far as what the doctors suggest to try next, well, I feel like there is a giant wheel in the backroom which they give a good spin and see what it lands on.

 

[gypsyoflove]

Hi Cinnabar,
I also have glaucoma and epilepsy... My neurologist wants to put me on Lamactil. After reading your post and googling "Lamactil and glaucoma" there is no way I will ever take Lamactil!

I too am having a problem, but it's with the treatment of my glaucoma. I was on travatan z and that worsened the severity and frequency of my seizures. For two days now I've been on alphagan p. My seizures worsened last night and this morning, but could be coincidental?

What are you on for your glaucoma? I'm sorry it's worsened and hopefully you can get on a good treatment asap.

 

[drarvindr]

hi , its been a while
sorry to hear about your troubles. As far as i know , diamox (acetazolamide) works to reduce seizures caused by increased intracranial pressure. It's a diuretic ( carbonic anhydrase inhibitor). it will also reduce your IOP to a certain extent , but just like the other meds , it too reduces sodium and potassium to make you pass urine and has a whole host of side effects of its own ( none of which are very pleasant to discuss). I dont think it will help for your TLE , though it might help the glaucoma a bit, although topical alternatives like Dorzolamide 2% and brinzolamide 1% are on the market and are better tolerated.
Trileptol is a gamble. While lamictal might "cause" glaucoma , trileptol isnt free of visual side effects either. pediatric studies have linked it to scotomata ( blocks of your visual field go black) , photophobia , diplopia ... the list goes on.
No drug is perfect , and while looking into many drugs , almost all of them have some visual side effect or the other. it's a question of playing the averages and trying the one with the least documented vision problems ( will look into this and let u know).

Will let u know if i find anything
Arvind