Lamotrigine / Lamictal: Anyone ever had... - National Migraine...

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Lamotrigine / Lamictal

Cally01 profile image
Cally01
β€’18 Replies

Anyone ever had these? What's your experience?

Thanks πŸ˜†

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Cally01 profile image
Cally01
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Peaches_7 profile image
Peaches_7

I've actually been taking 400mg a day since 2008. I take it for bipolar. At first it made me super sleepy but I had a "ramp up" pack that started me at 25 twice a day and in 2 months I was up to 200 twice a day. I did gain about 30 pounds but needed to. my bipolar is pretty severe. I did start to feel more sane. im on quite the cocktail now. Are they giving this to you for seizures or something else?

Cally01 profile image
Cally01 in reply to Peaches_7

Hi Peaches thsnks for replying πŸ˜†.

They're wanting to give me it as a migraine prevention med!!

Not sure I'll be taking it. To be honest I'm sick of them giving me labels. They say i could have SUNCT or SUNA, personally i don't think so. I'm sure my problem is muscular.

Peaches_7 profile image
Peaches_7 in reply to Cally01

I'm not sure what those types are but we'll be researching for sure. So I had always had migraines but usually only a few times a month. then 3 years ago when I got pregnant with my now 2 year old they started coming like 2 or 3 times a week and I was referred to a neuro doc who gave me midrin and Norco for rescue meds. Now I see a better doc and I still have the worthless midrin and Norco and he gives me Cambia samples that work great. I started botox therapy back in march and just had my 3rd round. At first it lessened my headache days (which I forgot to mention are up to daily since giving birth) by 13 days so that was great. This time I'm back up to daily. I know everyone is different and honestly I'm willing to try anything. I'd eat shit on a stick if it got rid of the pain. It's worth a shot!

Cally01 profile image
Cally01 in reply to Peaches_7

Oh i know Peaches it's no fun 😣 yeah I'm daily too. Botox, OCN all meds...nothing works.

Honkyjayne profile image
Honkyjayne in reply to Peaches_7

You're the first one who has relayed that they would do anything to get rid of pain ( shit on a stick ) that was brill .when I'm in my episode of migrain I'll do anything to get rid people who don't have migrains don't understand so much pain I would chop me own head off remember the saying how to tell if ya got a cold or flu if ya was to put a million pound on the lawn I'd tell um get lost ( in so many words) can't even lift me head off pillow can't even function horrible I have them daily saw consultant this week I've got to start with an injection now he also offers botox but I'm not sure of that now has anyone had botox let me know what they do hope you get freedom from pain soon jay

Cally01 profile image
Cally01 in reply to Honkyjayne

Hey Jay πŸ˜†πŸ˜† There's a post in the news feed about botox about 2 wks ago with loads of info in it that you'll learn loads from, eveyones diff experiences.

By looks of it you need to do it 3/4 times for it to be effective.

It didn't help me, i done it twice though.

I wish wee all lived closes and could help each other out 😣

It's soooo crap πŸ˜”

Fight on!!!!!

LeftBank profile image
LeftBank in reply to Honkyjayne

I had those type of debilitating migraines for 4 long years. St first tried OTC migraine meds, then a year of Neurontin at max dose with one neurologist, with little effect. Finally, got a referral to another neurologist and asked for Botox injections. These provided immediate relief (forehead, between the eyebrows, temples, back of neck and shoulders where a lot of tension had built up.

By the second treatment about 3 mos later, they went away and never came back, although I had one more follow up treatment for good measure... Th Botox basically disabled what had become chronic muscle twitching in my forehead I’m particular.

I recommend it.

Cally01 profile image
Cally01 in reply to Peaches_7

Peaches i had 9 months of migraine twice ( 2 kids - 5yrs apart ). They said the migraines were hormonal on account of the pregnancies and it kinda made sense cause I'd get 3-4 a month at that time when i wasn't pregnant!!

It's every day now and the neurologists can't agree what type of migraines I'm getting.

I know it's my jaw , now i have a tmj specialist listening will see what she comes up with.

Be well πŸ˜† p.s. am no dane the shit!!! πŸ˜‚πŸ˜‚

alicewetz profile image
alicewetz

Did a doctor give you this for migraine?

Cally01 profile image
Cally01 in reply to alicewetz

Yip but all the side effects are in my symptoms so I'd never know if it was working!! Madness.

madcyclistuk profile image
madcyclistuk

Hi.

Yes!

I took this for about 3 years and hated it.

I don't have a bipolar condition or epilepsy, just chronic non-aura migraine.

I'd tried Valporate and Topirimate and both had made me manic, one dangerously so. Lamotrigine depressed me. so it was a case of taking the lesser of the three evils! :-(

I would say the effect on my migraines were marginal and became ineffective.

When I tried to withdraw from it I was told it would be better stepping up the dose. I refused as it was ineffective. So had to withdraw from it alone. I found one old blog that gave advice about this - nothing official. beyondmeds.com/2007/12/20/l...

Withdrawing was difficult, but not impossible. I lowered the dose by 1/2 a tablet once every two weeks. I would hazard a guess and say that withdrawing from it is akin to withdrawing from SSRIs - needs to be done carefully, ideally under medical supervision.

I've now been free of Lamotrigine usage for nearly 3 years but feel my "brain chemistry" has been permanently affected by it. I am more sensitive to stress, anxiety and depression than I was before taking it.

I no longer take any prophylactic/preventative medications, only abortives. However, I'm having to cycle through those again as the zomatriptan I've been taking is becoming ineffective.

I've been offered botox but cannot find out from anyone, anywhere whether it's effective where pain is not the primary symptom, (silent migraines), and whether it's "safe" when there's a distinct possibility that migraines have developed from nerve or vascular damage... :-/

Cally01 profile image
Cally01 in reply to madcyclistuk

Madcyclistuk.....Oaft !!

Safe to say I'm not touching that!! I'll take the oxygen and give that a bash. Unfortunately i have constant pain but I'm sticking with the jaw specialists rather than neurology because they are just arguing with each other over what i have and in the meantime I'm in the middle.

I'm not taking any prevention meds, i wrap myself in ice and use sumatriptan injections when I've had enough.

I don't over do the quota as to avoid rebound πŸ˜†

I het what i call jaw migraines which calm down with ice.

Aura migraines I've had all my life - 3 to 5 a month. Wipe me out but i know they'll end.

The jaw ones don't stop, build and reduce all day

Thanks for the info πŸ˜†

Good luck πŸ˜†πŸ˜†

madcyclistuk profile image
madcyclistuk

I struggled to get anyone to note the psychological effects of preventative triptans as it was assumed the side-effects would be slight, even though they're also prescribed for bipolar conditions as well.

At the time I thought it was something to endure as it would relief the migraines, but found they didn't have a big effect on my migraines - the "up" ones just made me care less about having them!

I'm sure there will be some out there that have really good results with preventative triptans but I would need to be pretty desperate before I cycled through them again.

I'm about to try cycling through abortives again though to see whether any others are more effective as symptoms change and something that wasn't as good a couple of years ago might now be better.

I've also become VERY sensitive to light, but FINALLY am going for a colorimetry test, i.e. coloured lens test on the 15th November to see whether that can help or not...

More surprisingly as I'm very short sighted i.e. cannot see more than 4" in front of my nose without correction I might also be eligible for the "low vision clinic".

I'll keep you posted... :-D

Cally01 profile image
Cally01 in reply to madcyclistuk

Good luck πŸ–’πŸ–’

Peaches_7 profile image
Peaches_7

The botox is injected at specific nerve locations all over your head. I believe I get 34 injections at a time. the idea is to deaden the nerves to prevent the migraine. My migraines are localized to the left side of my head but I get the injections all over. The first round lessened the migraines by a few days, the second by 13 days. Then I was scheduled 6 days past my 90 and the migraines are back to daily. I asked to schedule as early as possible next time but 84 is the soonest the insurance will cover. I can't take triptans because I'm on Lexapro for depression and last time I took the two together I got serotonin syndrome. It can be fatal so that's a huge nono. So my rescue are tizanidine, norco, midrin, and Cambia when I can get samples. My insurance won't cover it and is 160 bucks for 9 packets. They are usually a 10 and the pain is down to about a 4 or 5 constantly in between the full on attack. I want another mri. I'd like to try ocn but need to give botox one more round.

Tried topomax and amytriptaline but spiraling depression became an issue. propranolol also increased my depression.

Fortunately my neuro and pdoc know each other so I don't get the "non compliant" label. love my neuro. he's awesome. Just wish I knew wtf happened to cause this daily agony. I'm sick of rolling on the kitchen floor moaning while my 2 year old watches.

Cally01 profile image
Cally01 in reply to Peaches_7

😭😭😭 god Peaches 😒 my 2 are 25 & 30 now. I don't know what i would do without my family support 😭

Kratom ....you tried /heard of this? Painkilling herb ?

Peaches_7 profile image
Peaches_7

No haven't heard of that one. I'll check it out tho. yeah I have a 19 yo in college but my husband wanted a baby so we had a baby. Had the 19 yo when I was 19. They both help when they can but I can't go outside when it's hot or super bright or high pollen days. I feel like my baby is being robbed of outside play all week. I wish I could try my brother's suggested cure of smoking pot but it makes me paranoid and I get panic attacks. We're all a hot mess on here!

I just have a hard time believing daily migraines just start all of a sudden. There has to be a reason ya know?

Yeah I'll totally check into the herb. thanks for the tip! And really, when I started the Lamictal I didn't have an increase of migraine. they just have to list every symptom everyone had during clinical trials. what dose are they suggesting? The cap is 400 MG a day.

Cally01 profile image
Cally01 in reply to Peaches_7

Yeah I'm the same!! Fighting like bear to find the trigger and i will!!!

Not interested in brain altering drugs.

I noticed a few people take benadryl first thing in the morning ( 2 of them )and it seems to help?

There's a fb page dedicated to kratom, best ones to take/ doses etc. Look into it, i am πŸ˜…πŸ˜†.

They're starting 25mg for 2wks and keep uping every 2wks, heven't told me the end dose yet but they can bolt!!! Not taking it πŸ˜†

I'm lookingbit lenses that block out blue, my husbands friend is a technician in opticians so he'll find the one for me hopefully!!