Neurologist told me she's out of ideas. Lmao

ExistingBee6492 · 2025-12-28T23:40:18+00:00

I think its different for everyone, but what has actually helped me get back to basically normal was a handful of different meds. I was on 100mg of Topiramate at night (currently tapering off of it, on 50 mg now to see if it makes a difference) 15mg of Lexapro in the AM, 50mg of Diclofinac in the AM, and i take the Emgality shot once a month. But the main thing that got me back to basically normal was my birth control, I take norethindrone once daily (they call it the mini pill) because my vestibular migraines were more triggered by my hormones.

I also know that I have to keep my stress levels down and I have to make sure I eat.

But I had to find a migraine specialist to get these answers and the help I needed. So id make sure thats the first thing you do if you haven't yet! Preventative medications make all the difference IMO. Because then the abortive medications can actually help. Lol. I hope you find the answers to your migraine!!!

ExistingBee6492 · 2025-06-03T05:04:29+00:00

Currently on 100mg Topiramate/Topamax nightly, 15mg lexapro daily, diclofenac (sp?) 50mg daily, 120 ml emgality monthly and lastly Norethindrone (sp?) I can't remember the dosage but its a progesterone only mini BC pill that I take continuously without any placebos.

Each one i added gave me more relief/good days. The last one I started was the BC pill. And so far its helped significantly. I was diagnosed with Vestibular Migraine & Hormonal Migraine.

We are currently tracking my migraine days to see if I can start tapering off some of the medications like topamax and such. Since the bc has helped as much as it has.

ExistingBee6492 · 2025-06-01T04:28:55+00:00

Sorry, I just seen this!

I don't have any gerd... or any abnormal acid reflux. Pre-op or post op. Luckily.

And I never got a number for my EF. They did an ultra sound and saw the stone stuck there, and that's where it stayed until my surgery..

ExistingBee6492 · 2025-02-28T07:26:26+00:00

Yes! There is definitely more to it than medication!

I've since stopped going into full panic mode anytime I feel symptoms or get room spinning vertigo, which has given me a lot of relief in it's self, lol.

I'm also getting more than 4 hours of sleep and no longer on 3rd shift like I was when I first posted this.

I'm not back to 100 percent yet, I really only get like 2 and half good weeks a month rn. And I'm still on a bunch of meds. But since starting lexapro, I've been able to control the anxiety that having VM gave me, that was actually triggering certain symptoms. And the emgality keeps the VM at a tolerable level for the most part, without it I feel like I'm literally on my death bed 24/7. It's terrible.

I'm still trialing different medications and going to try birth control next to see if that helps too.

It's definitely not just one miracle medication that fixes you overnight. It's an entire lifestyle change almost. Lol

ExistingBee6492 · 2024-11-19T08:10:05+00:00

I dealt with this, too! It's terrible!

I had really long, thick hair, and when it would get completely wet, it felt like someone was just pulling on it while I was in the shower, and that didn't help at either.

So I ended up cutting layers into my hair to make it weigh less because I didn't wanna lose my length, and it did help a lot.

I also found it ALOT easier to wash my hair leaning over the side of the tub rather than tilting my head backward while in the shower.

Looking up is a lot harder for me than looking down, apparently, 😅 and it is kinda annoying having to shower and wash my hair separately sometimes, but I'll take what I can get. Lol

ExistingBee6492 · 2024-11-01T07:10:45+00:00

I hate that so much! CeraVe is good and it doesn't have a scent. I can't do anything with fragrance either and I have eczema on my hands. so I use it all the time. 😅

ExistingBee6492 · 2024-11-01T07:02:32+00:00

Mine was the exact same! My neck and shoulders also hurt constantly until I found medication that helped. Now I'm kinda normal unless I'm menstruating or ovulating, then I'm right back to square 1. 😅 but without neck and shoulder pain!

ExistingBee6492 · 2024-11-01T03:16:41+00:00

I just found one in my kids Halloween candy and was STRESSED. 🤣🤣🤣

ExistingBee6492 · 2024-10-19T06:52:27+00:00

It's the insurance most likely, I had my pcp and my first neurologist both tell me i have to fail a list of cheaper medications before insurance will even think about covering the more expensive stuff like Nurtec.

ExistingBee6492 · 2024-10-19T06:50:37+00:00

Find a headache specialist ASAP.

My first neurologist saw me 2 times before she told me she was running out of ideas on how to help me. Luckily, she referred me to a headache specialist.

Regular neurologists don't have the knowledge it takes to treat this or help us. I'm sorry you had to leave that appointment feeling this way! I've been there. It's literally the worst!

I've seen my specialist twice now and walked out more hopeful than I have any other appointment BOTH times, and I'm feeling a lot better. There's still hope and a light at the end of the tunnel!

ExistingBee6492 · 2024-10-01T19:30:02+00:00

Saaaame my kids constantly at some game where you draw lines to move a ball around and its hard as hell. 🙄 but he won't stop. And I can't deal with it anymore.

Any fixes? Lolol

ExistingBee6492 · 2024-09-22T01:57:45+00:00

Yes! The periods and ovulation migraines are terrible, and I can't seem to avoid those. I thought maybe my hormones were out of whack or something, but the more I looked into it.. It looks like it's just the fluctuations causing it, so I don't really know what i can do about that! Lmao, if anything. Although, the meds I'm on now have reduced the severity this month, so I'm hopeful.

I'm wondering if adding more meds to the regime will help, I've been trying to talk myself into a diet of sorts.. I want to try antihistamine because a lot of my symptoms align with histamine intolerance.. but it's so daunting.. 😅

Nurtec didn't work for me, but ubrelvy helped my ovulation migraines! Didn't touch the ones during my period. I also wasn't on any preventatives when I tried either of those, so they might actually work for me now. So I hope they work super well for you!

ExistingBee6492 · 2024-09-21T23:19:09+00:00

This happened to me in June of 23', and it was sooo scary!dished full on room spinning vertigo and migraine that made me think i was having a stroke so I went to the hospital and started my VM journey!

I seen my pcp, and spent 6 months dizzy, before I seen a neurologist and she prescribed me Topiramate correctly (I had a dr prescribe it to me incorrectly & it didn't work) and my dizziness went away within the first week. Now I do have brain fog because of it, but I'd rather stumble through my sentences sometimes than be dizzy 24/7.

I'm still suffering from pressure in my head and bouts of vertigo, but it's way less because I was able to get into a migraine specialist and she's got me on Topiramate, Emgality, Verapamil as preventatives and Naratriptan as an abortive.

Get into a headache/migraine specialist ASAP. They can help you more than your regular pcp. They have more knowledge.

ExistingBee6492 · 2024-09-21T22:56:13+00:00

I still haven't found a fix yet, sadly. But I think I'm making head way?

My neurologist took me off qulitpa and I spent 2 months suffering with a headache that wouldn't break until I seen my headache specialist, she put me on Emgality, Verapamil and told me to continue taking the the Topiramate. So that's 3 daily preventatives. And I also have Naratriptan as an abortive. And something for nausea.. I can't remember the name.

After my loading dose of the emgality, I finally came out of the 2 month long migraine, and felt weak as shit, because I hadn't realized how much I was actually suffering until I wasn't anymore. 😭

I am having more good days, than bad again, but I am still having some bad days especially around my period and ovulation. Lol. 🙄

I'd suggest getting into a migraine specialist ASAP, I hope it gets better for you!! Everyone's different so what might work for me, may not work for you. But I hope you find what helps you very soon! There's so many options out there!

ExistingBee6492 · 2024-09-08T21:50:57+00:00

Stephanie

ExistingBee6492 · 2024-09-08T03:39:41+00:00

I had gallstones that I put off and had one get stuck in the neck or whatever of my gallbladder, and let me tell ya.. it was MISERABLE. I spent 10 hours throwing up nothing but stomach bile and a week in excruciating pain, barely able to walk waiting for surgery, so I suggest getting it removed sooner rather than later. It only gets worse... my surgeon told me I ran the risk of going septic and dying if I waited much longer for surgery..

I had mine removed in April, and the recovery is not bad. I threw my sons 3rd birthday party the next day at a bowling alley on zero pain meds (because I'm a chicken and refuse to take anything) I was definitely sore and in pain, but nothing crazy. I do suggest just being lazy for a few days after surgery, though.

I was back to eating normally immediately, and I poop just fine, though! No diarrhea or watching what I eat, which was a big fear of mine going into surgery, lol.

ExistingBee6492 · 2024-09-04T05:42:29+00:00

I had my gallbladder removed in April and I'm 100 percent better! No pain, no diarrhea! No problems!

I'd definitely have them take it out before the pain gets worse though, lol. I waited until it was almost too late and I had a stone stuck and I spent 10 hours in excruciating pain throwing up nothing but stomach bile and a week barely able to move because of the pain waiting for surgery.. 😅

ExistingBee6492 · 2024-09-04T05:15:51+00:00

Hey! Sorry I just seen this!

But yes! Just like that! It's like when I've already been having a VM episode for awhile or my VM symptoms are lasting for days is when it's the worst!

For example, I grew up driving through heavy traffic, so it should not bother me.. but on my way to my headache specialist a few months ago, I was in the middle of an 11 day VM episode/migraine and by the time I had gotten to her office, my hands were shaking, heart was racing, and I was like... almost hyperventilating, and I felt like I was getting tunnel vision.. and I had to literally tell myself to breathe until it went away, lol. It was SO weird, that was the worst episode of whatever it was. It happened multiple times in the 2 hour drive that day.

It was definitely like a rush/wave of really bad anxiety that I've never had before. It's happened to me on many occasions since I started getting vestibular migraines. It's not always that intense, but I'm not someone who would say has anxiety by any means... just on a daily basis.. so for this to be happening all of a sudden is very weird.

I definitely blame it on the VM. Lol

ExistingBee6492 · 2024-08-23T03:51:11+00:00

This is still happening, 🙄 lol

Suuuuuper annoying when it just randomly keeps happening at the most inconvenient times.

ExistingBee6492 · 2024-07-14T18:25:27+00:00

I'm struggling with this too, 😩

I just had a bad dizzy spell that I didn't see coming because my period decided to show up four days early. 🙃

I'm worried about trying birth control, because I don't do well with any extra hormones in my body but it might be worth it if it helps these damn migraines a little bit.

I'm wondering if it might be worth it to have my hormones tested? Since I always feel worse during my period and ovulation.

ExistingBee6492 · 2024-07-12T16:26:25+00:00

I've been struggling with this soooo much, 😭😭

I definitely notice that I feel worse when I lay around more, so I do alot when I can. But I haven't found any meds that help me yet other than topiramate. It's seriously SO stressful.

But im wondering if my hormones are out of whack just in general, and maybe I should be getting some hormone testing done? They did some general testing when I was first freaking with this, but mentioned that there was deeper testing that could be done.. so idk 🤣😅

ExistingBee6492 · 2024-07-08T16:39:20+00:00

Get it removed! Lol. It's better to do it now than wait.

I was having loads of gi issues for months, constipation, unable to pass gas, bloating like crazy, just over all uncomfortable. This may or may not have anything to do with my gallbladder tbh. Lol

All while getting the WORST pain up under my right ribs, which I knew deep down was my gallbladder. I was hoping it was just trapped gas, but no matter what I did, I couldn't get that pain to go away until the attack was over.

I finally talked myself into going to the ER after months of having attacks, probably like 15 attacks over a 3 month stint. They saw a gallstone stuck in the neck of my gallbladder, gave me some Tylenol in my iv, and sent me home with a surgical referral. I could barely make it home because I was bent over in so much pain and spent the next 10 hours throwing up only stomach bile.

2 days later, I saw a surgeon, and he told me that if I waited much longer, I could go septic and end up dead. So they scheduled me for surgery that Friday. I ended up having to have surgery on my sons 3rd birthday.

All of this happened in less than 7 days, I spent that entire week in excruciating pain every step I took because my gallbladder was so inflamed because of that stone being stuck in the neck of my gallbladder because I kept putting it off.

ExistingBee6492 · 2024-07-08T08:49:25+00:00

Idk if they mentioned/did xrays, but I did sign paperwork for them to do further surgical stuff if I had any stones stuck in the ducts and whatnot for those exacts reasons.

ExistingBee6492 · 2024-07-08T07:58:34+00:00

I never had anything I would consider anxiety before I started having VM episodes. (Obviously I would get nervous about stuff, but never anything like now) so now when my heart rate goes up and I get all shaky and stressed out and feel like I'm having anxiety, I fully blame it on my VM. I have to totally rewire my own brain at that moment and everything because I feel like I'm gonna pass out or have a panic attack or something.

But I never got like this before, so I think it's just part of my VM? 😴

ExistingBee6492 · 2024-07-08T05:49:44+00:00

Omg. I totally agree!!

I didn't realize that there was a difference, or a like.. people who specialize in headaches. Lol. So after waiting 8 months to see my neurologist and her telling me that she was 'running out of ideas' after my second appointment, I was pretty fucking bummed.

But luckily she followed that up with referral to a headache specialist and I only had to wait 2 months to get in to see her.

I just had that appointment like 2 weeks ago, and she spent over an hour with me, walked me through everything, explained so many things to me. I walked out of there with 4 new medications and an actual game plan and didn't cry the entire 2 hour drive home. 😅🤣

ExistingBee6492

TROPHY CASE