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Experience or thoughts on Lamotrigine (Lamictal) and also Botox?


#1

Wondering what others have experienced or read/heard about Lamotrigine (Lamictal). My GP and her pharmacist have mentioned it as a possible next step. I’m currently on 50mg Nortriptyline but haven’t had the results I hoped for, and have been reluctant to switch drugs but I do need to do something. Wondering if I might reduce Nort (maybe to 25mg) and add Lamotrigine at a low dose? I definitely know more about the condition and approaches than my GP at this point, and many users of this forum know much more than me. I’m seeing a new neurologist in 6 weeks—my GP says she may be able to consult with the neuro via email in the meantime. This new neuro is also a Botox provider and I am very interested in that, since I experience both headaches and vestibular symptoms (dizziness/drunk feeling/sick head) and Botox is said to have few side effects. Any advice is welcome and sincerely appreciated.


#2

Appending to the above: my GP says beta-blockers and calcium-channel drugs are not good options for me since my blood pressure and heart rate are already on the low side. Her view was that the fatigue would be intolerable for me (already very fatigued from a variety of physical injuries and also the migraine). So I guess the anti-seizure drugs are the next class to consider, hence my question about Lamotrigine.


#3

Sounds like best idea to me. Have you tried getting down on bended knee?

For much differing reasons we seem both in same boat here. Anticonvulsants would be my next step too if/when I choose to go that way. So I’ve read up and up. Personally I find them very powerful and scary. From what I read generally in medical papers Lamotrigine was good for dizziness etc but not headaches. Dr Hain doesn’t favour it either saying its ‘mildly effective with significant side effects’. It also has significant interactions with other drugs which can be an issue. He much favours Topamax. The migraine specialist I saw much favoured Sodium Valproate. Indeed she eulogised over it as her first choice for MAV. The exeter headache clinic patient info sheets the neuro referred me to quite like Lamotrigine, say it’s couple of months before results are seen and daily dose of 100mg reached by week 9 but again quote side effects particularly a bad rash which some experience. However all drugs have side effects it’s true.

Botox @Jojo65 can tell you about Botox. She’s found it great for headaches but not much else. I wonder, my opinion only this bit, Botox seems to wax and wane. Needs repeating three monthly I think it is so perhaps levels never consistent enough to start to control other MAV issues, As far as I am aware nobody’s proven Botox will control MAV as yet. Helen


#4

Hi

Have you looked at the Canadian Headache Society guidelines for migraine prevention. I’ve just stumbled upon it. Try it. Www.guidelinecentral.com. Helen


#5

Have you read “heal your headache”? You can find it at the recomended products page

In that book the author dispels the common myth that you can’t take blood pressure meds for migraines if you have normal or low blood pressure. And I’m also proof that is a myth as I’m currently on 360mg of Verapamil. My blood pressure was 110/70 when I started and now its at 120/80. So, yeah, it actually went up! Be aware that I did feel the effects of low blood pressure as I increased the dose, but my body figured it out and adjusted over time. I no longer have low blood pressure symptoms from Verapamil. Just good ole constipation…

Oh yeah, and my resting pulse was 50 bpm before Verapamil, and its still 50 bpm. My background is distance running and soccer, so its always been a bit low.

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#6

Yes, that’s true. My GP started me on betablocker Propranolol because my blood pressure was verging on High and it still is! Guess it’s because blood pressure med dose is higher than MAV dose. Quite alot higher. However it has brought my pulse down to 50. I guess many doctors just aren’t prepared to take the risk. Many won’t use betablockers for migraine at all simply because it can interfere with blood pressure. Ultimately they are responsible for our health so I don’t suppose you can blame them really. Helen


#7

Hello
You seem to be experiencing all the same symptoms as myself. I am currently having Botox treatment due to having ALOT of failed attempts at different meds. But i have to admit a handful of them were never given a half chance as i just didnt have the stamina to continue them as i was so poorly and couldnt risk feeling any worse…i now realise this was a bad decision i should have tried harder. The Botox…great for my chronic daily headache and neck pain. My results showed 70% reduction after the first treatment. May i just say i dont get classic migraine like i did when younger i had a chronic daily headache which presented differently each day but was always there. As for all my other MAV symptoms i still struggle with those but have been told by my neurologist to try and persevere as this treatment is cumulative. I have just recently asked for a med to add to my regime to see if it can help with the vestibular side of things.
Not sure how long you have been ill but i had to suffer 4 years before Botox was offered. Its hard isnt it?
Jo x


#8

omg that is long and very small print. Full of interesting/useful info. That document would recommend Topamax clearly. Still unsure what I will ask for in terms of next drug; maybe adding a small dose of verapamil and seeing if that works. I am now feeling open to trying lamotrigine as well. But I am also very interested in Botox.


#9

Thanks so much. I have a feeling that Botox would be helpful for headaches. Nori was actually quite good for lessening them for a while, but seems less effective than a month ago. Nori hasn’t been as helpful for the vestibular symptoms, which is why I am feeling more open to lamotrigine, or to lobbying for verapamil…or I don’t know.

Fyi my migraine has been chronic for nearly three years (episodic for 20 years prior to that)—for the first 2 1/2 I just fought through it and lived my life. It worsened dramatically to the point of debilitating after I was hit by a car 6 months ago. Oh how I wish I could change that day! if I’d been five seconds slower leaving the house, or five seconds earlier, I might still have my life and a more intact body and brain. Drug treatment for the last 5 months only.


#10

I’ve really good eyesight so didn’t even notice. It’s one thing I can guarantee a cure for though I didn’t need it on this occasion. Get an Ipad! If only curing MAV could be as easy, eh. We wish.

I must admit if I had to choose I’d take Topamax over Lamotrigine any day. Do also bear in mind every drug has an optimum dose at which it’s effective so with alot of them a ‘low dose’ can be tantemount to a ‘No dose’. I wasted a year on too low dose of Propranolol, and suspect the same may apply to your current Nori trial. Quite how dosage is worked when combining I don’t understand, you’d imagine two ‘reduced’ would seem right but I’ve not seen evidence for that anywhere as yet.

Amitriptyline can react with Botox I found to my surprise and Nori is tricylic antidepressant, same class so worth checking out. Helen


#11

I think that’s a good idea. I started on 20mg, then 40mg, then 80mg, etc… until I could handle 120mg of extended release. From there I was able to jump to 240mg and then 360mg without too much trouble. Its unlikely that you will have large improvements at <120mg, but the point is to get your body used to the drug so you can get to the higher doses in my opinion. It took about 3 months for me to build up to 360mg.


#12

I’m not sure that’s true, I believe the upper range of MAV usage is similar to the upper range use for blood pressure.

I’m not sure what the risk is but from what I’ve researched if you have normal to low blood pressure taking a blood pressure medication doesn’t typically drop any further, except for maybe in the short term when you increase the dose. I’m sure there are exceptions for some people but its definitely not the rule!

I see a lot of fear on here with blood pressure meds, and I was afraid to start too, but they’re a very traditional tool for migraines and well tolerated by a large percent of the population, even if you have normal-ish blood pressure to begin with.


#13

I think we might just be talking at cross purposes here. What I was trying to say was the lower MAV designed dose was less likely to cause low blood pressure. Much as the lower doses of antidepressants used to treat MAV don’t alter mood, I was advocating fot, not against betablockers.

I was referring to Propranolol, which I myself take at high dose, and find pretty successful. I’m not trying to put people off betablockers, far from it, I’ve actively encouraged some towards them. That’s why I said miy blood pressure was verging on high and, despite taking the Propranolol, still is, ie GP hoped it would reduce it but it hasn’t done so, and that I would imagine that’s because the dose for migraine prevention, (in UK this is 80-160mg, the limit a GP can prescribe without a consultant’s sayso) is lower than that used to treat high blood pressure (which in UK is 160-320mg).

Beta blockers and calcium channel blockers can slow the heart to the point it stops.

I don’t recall saying it was the rule that betablockers were guaranteed to lower blood pressure. They certainly haven’t lowered mine as I said. Migraineurs do tend to be hypersensitive to meds though. Jojo65 had to abandon betablockers because of it and a newcomer today @Mav found three @ 20mg Inderal caused fainting due to low BP too. As you say many many people tolerate them well, me included. I’m happy to have them particularly when I read about the side effects many experience trialling tiny amounts of other substances. Enough to put you off before you even start. Helen


#14

And Jo, I should have said thank you so much for the kind note and understanding. I am hoping that maybe Botox will help with headaches and that a higher dose of my current med or a different one will be of use for the vestibular symptoms. I don’t think diet, supplements, lifestyle, or stress management have done much for me, but I’ll keep on with all of them just in case. This disorder is so isolating; all my friendships are gone and I don’t even think my patient and kind spouse has an inkling of how awful this VM feels, he just knows I can’t work or go out in the evenings any more, and am irrationally angry and tearful in a way I never used to be. I really appreciate the kind replies from all on this forum.


#15

Yes, I get that too. I think some of the emotion comes from the migraine cycles themselves though. Shoot, I hope you can get some relief soon. I know how hopeless it can feel and how long it can last.


#16

Thank you so much for the kindness; it means a lot and has since the first day I posted here and received such kind and understanding replies. I know that many are worse off than I am and wish healing and contentment for all, especially those experiencing this insufferable condition. I’m largely fine when I’m home on the couch, but that just doesn’t make for a very fulfilling life. Though I’m trying!


#17

Ive said this many times on this forum…if i were to lie down for the rest of my life i would never feel ill!!! And also have no life either!!! I hate this condition its ruining my quality of life so much i cant tell you
Jo x


#18

Don’t worry. One way or another, it does improve, eventually. And, an added bonus, you’ll come out stronger and more empathetic, bound to, can’t fail.

I bet virtually everyone on here has thought exactly this many times, and will probably think it again before long. It’s such a wretched condition there’s no way others can appreciate how you feel, and trouble is, it’s invisible. We look healthy and it just goes “OnandOn;. Over time plp just lose patience and forget all about you. Helen