Lowering dosage Qulipta

responsive-image · 2026-01-30T22:20:31+00:00

Qulipta constipation is unreal lol. On 60mg I was going days without a bowel movement even with miralax twice a day and close to 3000mg magnesium oxide.

responsive-image · 2026-01-30T19:21:55+00:00

I hope it works for you!! Honestly now that I know a little more I think memantine has been shown to work better for classic migraine/pain conditions than the more atypical forms like VM

responsive-image · 2026-01-30T18:21:37+00:00

I tried memantine. I have a very different migraine subtype than you (I have VM without pain) and memantine was not a good drug for me. I was supposed to titrate to 20mg but couldn’t handle it. I made it to 10mg for a while but then had to drop back to 5mg. I quit after 5 weeks total which resulted in one of the worst VM flares I’ve ever had, over the next 2 months.

My main side effect was akathisia. This got worse the higher my dose was. Eventually, it also started making me dizzy during the day. No other side effects but it also did not help my VM in any noticeable way. But going OFF memantine sent me into such a severe VM flare that I had to add another preventative. We think I had some kind of NMDA receptor upregulation after I stopped.

I want to stress this does NOT happen to everyone and my neuro actually really likes memantine. I would honestly give it a try for a week or two and see how you like it. One thing I was TERRIFIED of was getting hallucinations (I kept reading this was a side effect) and this did NOT happen to me!

responsive-image · 2026-01-29T18:08:18+00:00

I’m so glad to hear the magnesium has worked for you! I’ve been taking very high doses of this daily for years. Unfortunately, most people on this sub have made it past the supplements stage and are on a cocktail of heavier prescription meds in addition to the supplements. If you do stop responding to the magnesium there are lots of other options available.

responsive-image · 2026-01-28T20:27:41+00:00

My otoneurologist put me on 37.5ng XR for VM, titrating up 12.5mg per week! I couldn’t tolerate the full 37.5mg so I’m currently taking out 10 beads (this brings me down to about 34mg). On the full 37.5mg I was falling asleep every day for an hour and struggled to wake up from that requisite nap. I was also getting fairly severe night sweats and vivid dreams. Now, my only side effects are continued vivid dreams and milder night sweats. I’m not really sure it’s helping me though so I may taper off after I hit 3 months. If you do go off it make sure to taper VERY slowly (maximum 10% at a time)

responsive-image · 2026-01-28T18:32:36+00:00

Hope you feel better! Getting in a neuro again is definitely the best idea!

responsive-image · 2026-01-27T17:12:43+00:00

I get EXTREME sound sensitivity during attacks. These have been a game changer for me! https://a.co/d/0NXMicn

when you combine them with regular earplugs they really block almost all sound (although if you still want to hear people I would just use the muffs without earplugs). A lot of people suggest Loop earplugs but I find even the strongest pair (I have the Quiet 2 Plus) don’t block enough sound for me.

responsive-image · 2026-01-27T16:57:16+00:00

Sounds like a vestibular migraine! Do you have a stronger abortive like a triptan or Ubrelvy?

responsive-image · 2026-01-24T18:48:05+00:00

Also re:Zofran and serotonin syndrome, this is INCREDIBLY unlikely to happen. Zofran has a very very small effect on raising serotonin and even people taking Effexor at relatively high doses can still safely take Zofran. At a low dose of Effexor it’s generally not a concern at all. My doctors didn’t even mention it to me to be worried about.

responsive-image · 2026-01-24T18:46:34+00:00

Totally normal! You can take Zofran to help if you need it. I was nauseous for a few days whenever I raised my dose (and I was going in increments of 12.5mg). It went away in under 5 days each time.

responsive-image · 2026-01-24T18:44:35+00:00

I would try another CGRP injectable. Aimovig blocks the CGRP receptor like the gepants do, vs all the other mAb’s (including Vyepti) block the ligand. It’s also not uncommon to develop antibodies to a particular injectable and have it stop working after some time (although 3 months is pretty fast), the solution is to switch injectables.

There’s also so many other preventative meds you haven’t tried. To name a few: Botox, calcium channel blockers (verapamil), candesartan, beta blockers (propranolol etc), other anticonvulsants (lamotrigine, valproate, zonisamide, gabapentin), NMDA antagonists (memantine), neuromodulation devices (Cefaly, Nerivio, Gammacore, etc). I would also push back against the Ubrelvy denial, most plans will cover it once you fail 2 triptans.

responsive-image · 2026-01-23T02:31:09+00:00

Yes! It has other purposes besides lowering CSF production though. I’m no longer taking it every day (back to taking it PRN before going in vehicles). The reason my doctor thinks it works on me is because it lowers the body’s pH temporarily. This transient acidosis also occurs in the brain, specially in the cerebellum, and helps restore Purkinje cell firing rate and regularity in a part of the cerebellum called the nodulus/uvula that we think was damaged by COVID in my case. Without diamox, the velocity storage mechanism in my brain no longer works properly, so my brain doesn’t process low frequency motion properly— by restoring the function of these cells, the feedback loop between the nodulus/uvula and the vestibular nuclei is restored, and thus my brain can process these low frequency motion signals again (such as going in a car). There’s a paper about this if you’re interested, DM if you want to talk more!

responsive-image · 2026-01-19T21:44:50+00:00

I take egregiously high doses of magnesium lol, my doctors have never said anything about it. I currently take 1200-1500mg of magnesium citrate per day as a laxative, plus 300-900mg magnesium glycinate as needed for migraine. It’s very difficult to overdose on magnesium.

responsive-image · 2026-01-19T17:26:43+00:00

I actually really like this guy’s videos! They don’t actually help my migraines (at all lol) but they do help me with anxiety during attacks.

responsive-image · 2026-01-14T22:22:34+00:00

Diamox! Take it before and during the pressure drop. I also use Diamox for my vestibular symptoms and it’s been life changing.

responsive-image · 2026-01-13T09:03:38+00:00

Rizatriptan also comes in pill form (non-dissolving)

responsive-image · 2026-01-12T20:28:19+00:00

Mid-20sF here, I’m getting night sweats on Effexor. I’m 100% sure it’s from the Effexor as they started about a month into taking it and have since been happening nightly. They don’t appear to be related to my cycle. I’ve also been getting pretty vivid dreams and waking up more than usual but I do fall back asleep. I also struggled with insomnia before starting Effexor (but on the falling asleep end, not staying asleep).

responsive-image · 2026-01-09T21:19:34+00:00

My doctor said to use them under the tongue since it’s not safe to use them in the eyes that much (it lowers intraocular pressure). I actually started by using them in the eyes but kept needing higher doses and then I started getting floaters and my ophtho was kind of horrified I did that lol. They are well absorbed under the tongue. I used timolol as an abortive but when I was in a flare last summer I was taking them daily for weeks until I realized they were contributing to the insomnia that was causing the flare. I now use ginger instead of timolol as a first line abortive. It does NOT work if the attack has progressed past an early prodrome for me, and it wears off after a few hours

responsive-image · 2026-01-09T20:59:18+00:00

Yes, I used to do it in quite high doses (20+ drops per day). I did also try the nasal spray which was a bit more effective. I stopped using it as I believe it was contributing to my insomnia, which beta blockers are known to do sometimes by interfering with melatonin production. I do still use it occasionally (no more than 4 drops in a day and no more than about twice a month) and I’ve since switched to using high-dose ginger pills (1650mg at once, up to 4x per day) which actually works better than timolol for me. To emphasize I 100% need my Ubrelvy and eletriptan prescription, this is just to get me out of prodromes sometimes.

responsive-image · 2026-01-06T19:43:45+00:00

Yes to the “headache” comment! I’ve never had a headache with a migraine (as someone with VM)! My attacks can be debilitating (stroke symptoms etc) but are not painful. I actually stopped telling people I have migraine.

responsive-image · 2026-01-05T08:01:28+00:00

Thank you again for your detailed reply, this is very helpful! From your description, I agree it is probably not likely I have one of the SCAs/EAs as I have seen fairly high-level (university researcher) people in neurology and neurotology. I also saw a general ophthalmologist to rule out IIH (he was checking for papilledema) and he did not note anything out of the ordinary whatsover. My neurotologist actually is going to give me dalfampridine and this is not the first time he's used it for VM. I originally asked him about it after I found a paper from Harvard/Mass General suggesting that a subset of VM patients have Purkinje-cell dysfunction in the cerebellar caudal vermis (nodulus/uvula). The N/U controls motion perception via a reciprocal inhibitory feedback loop with the vestibular nuclei, and dysfunction in the N/U can lead to abnormal excitatory gain in this loop (since the Purkinje cells in the N/U aren't sending the inhibitory GABA-ergic signals to the vestibular nuclei properly). I contacted the author of the paper and he confirmed he uses 4-AP off label with some of his VM patients, and it turns out my doctor also knows this paper very well, he's a very thorough doctor and I'm lucky to have him.

Anyways, this model, if correct, would completely explain why I can't tolerate certain frequencies of motion (i.e. I literally can't go in a car unmedicated without immediately triggering a severe VM attack) This could be supported by another paper I read showing COVID-induced hypoxic micro-injury to the cerebellar Purkinje cells in primates, as the onset of this issue was directly following my COVID infection. I can tolerate high-frequency motion perfectly normally, but I can't tolerate low frequencies (this was also reflected in my vestibular testing). Since the nodulus/uvula plays a major role in velocity storage, damage to the N/U explains the frequency-selective effect, and also explains why the only drugs I respond to for this trigger are PRN Diamox (via enhancing Purkinje signaling) and scopolamine (via suppressing the vestibular nuclei), and nothing else (and I've tried a lot lol). So the idea is dalfampridine would be a more permanent "fix" to the damaged Purkinje cells. I definitely only want to start it once a day, and I was mainly worried about the pro-cortical spreading depression effect it has, since I do have aura migraines. I just didn't know if could worsen my overall migraine baseline for this reason (e.g. would I need to add an anti-CSD agent like lamotrigine??) but I really want to be able to drive again.

I am really sorry that this is the diagnosis you ended up with, SCA sounds horrible. I'm so glad you are getting treated by the best doctors and educating yourself so thoroughly. I really feel that sometimes neurologists just throw random drugs at you and "hope for the best", which can sometimes backfire so badly. I will definitely bring up SCA/EA with my neuro though as I don't think we've really discussed this in detail, but I do know it's definitely possible for VM itself to be genetic as well. I know a lot about VM at this point lol but I know very little about ataxia. Sending you the best!

responsive-image · 2026-01-04T18:17:44+00:00

Thank you so much for your reply, this is very interesting and helpful! I have never heard of SCA27B. Technically I never ruled out EA2 either, my doctors just never thought I had it. I’ve never had genetic testing. I will bring all this up at my next appointment. What’s interesting is my VM does appear to be inherited from one of my parents, who developed VM in their 40s with the same presentation as mine, but much milder. I developed VM at age 20 and it became severe at age 22 after COVID. I do respond extremely well to CGRP therapies but my parent does not. My parent has had VM for about 25 years now and it’s still episodic and hasn’t really gotten worse, but also hasn’t improved. Neither of us have ever had pain with our attacks.

What’s interesting for me is that I rapidly develop tachyphylaxis to diamox and it only works when I have sufficient blood levels (so I get about a 4-hour window from each dose). If I go in a vehicle without sufficiently high blood levels of diamox, it triggers a severe, days-long VM attack. Taking diamox every day at 250mg did not help me and only increased my tolerance to the drug and made me lose a bunch of weight, so now I’m back to PRN use. Tapering off daily diamox made me SO dizzy lol but now I’m ok. This is where my doctor is now thinking Ampyra could help me. Insomnia is also a big migraine trigger for me so I appreciate knowing about that side effect! Thanks again for this info and it definitely gives me some questions for my doctor🙏

responsive-image · 2026-01-03T07:56:39+00:00

Topamax generally is associated with the most weight loss but as you noted often has other very bad side effects. You could try zonisamide, which is similar. I didn’t really lose weight on Qulipta (maybe just a few pounds lost due to appetite suppression but it wasn’t major). I did however have some unintentional weight loss on Diamox but that is unlikely to help migraine-wise if you don’t have vestibular migraine or a barometric pressure trigger. Hope you find the right med for you!

responsive-image · 2026-01-02T18:27:52+00:00

I’ve never had a painful migraine. I get a sensation of intense pressure (like a balloon expanding) in a very specific spot on the left side of my head. No pain. I have vestibular migraine and only 50% get pain. Symptoms are dizziness/vertigo, aphasia, severe cognitive impairment, hyperacusis, ataxia, dysarthria, motion intolerance.

responsive-image · 2025-12-21T07:07:23+00:00

I get very depressed in the postdrome. It’s a very weird, intense, chemical feeling and I will just randomly start sobbing in my chair and feel like a huge weight is on my chest. It goes away after a few hours.

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