u/Barlie2

Im relatibely new to this migraine thing as i only got diagnosed about 2 months ago.

And i see people here saying their preventives show effects at the 3 months mark

So every trial is 3 months?? What if the first preventive trial doesnt work then another 3 months of agony????

I was wonderinf if people can hop on a few preventives and then taper one by one to see which is helping??

Like aint no way 4 trials take a year to confirm if anything works right

This happened 3 times now in the span of a year and was wondering if anyone has had the same thing? Its always ramping neck shoulder and trap tightness and then at the pinnacle of it, suddenly the whole world spins and i experience intense fatigue for about a week and i feel horrible for about a month ish

Does anyone else have the same thing? If i close my eyes and turn in bed the world feels shaky or when im closing my eyes face down during a massage i feel like the world is swaying

The pattern is i will have neck and trap tightness for almost 3 weeks then everything starts spinning and i feel fatigued for like a good week where i cant do anything

Then it slowly lifts but gives me headaches on my temporalis for weeks after. Basically when this happens im basically down and out for almost a month and a half.

I get light sensitivity during this period and even turning my head makes the world spin. It usually resolves on its own and i feel largely normal until a few months of poor posture later and i have this shit again. Third time this has happened

Neuro told me it might be vestibular migraines cus of the photophobia but he said its weird if a migraine wipes me out for a month and a half

My pain doctor said it could also be cervicogenic headaches but i got clean mris for cervical spine and brain so…..

Anyone experienced something similar?

https://www.reddit.com/r/ibs/s/prCLhJ3vYB

Previous post above

Recent changes are i started laftobacillus rhamnosus with fos and L plantarum and it made me worse so im sticking with the good ol 3 probiotics in the previous post

Im seeing a substantial change- i can now eat more fatty foods and be noticeably better instead of the loose stools im getting firmer and firmer stools

Another change i made was also i stopped using the monash app and changed to a app called aIBS . It has in built ai and i can ask it questions like FODMAPS and such. Pretty cool that it also can read my food and stool logs from the app too.

Im gonna continue the probiotics and then continue on with cholestyramine for another month or two then start the taper.

I seem to have poor levels of bacteria that helps with immunity and im not sure if the probiotics i tried made me feel worse due to it being too many strains at once or due to the FOS. Thinking of trying a different brand without FOS to see if it works?

And im battling some other medical issue that may or may not have developed from this so will keep yall updated

https://www.reddit.com/r/ibs/s/prCLhJ3vYB

Previous post above

Recent changes are i started laftobacillus rhamnosus with fos and L plantarum and it made me worse so im sticking with the good ol 3 probiotics in the previous post

Im seeing a substantial change- i can now eat more fatty foods and be noticeably better instead of the loose stools im getting firmer and firmer stools

Another change i made was also i stopped using the monash app and changed to a app called aIBS . It has in built ai and i can ask it questions like FODMAPS and such. Pretty cool that it also can read my food and stool logs from the app too.

Im gonna continue the probiotics and then continue on with cholestyramine for another month or two then start the taper.

I seem to have poor levels of bacteria that helps with immunity and im not sure if the probiotics i tried made me feel worse due to it being too many strains at once or due to the FOS. Thinking of trying a different brand without FOS to see if it works?

And im battling some other medical issue that may or may not have developed from this so will keep yall updated

I get episodic VMs and feel completely normal inbetween(started last year september and i have had 3 episodes)

But each episode lasts for around a week of intense vertigo and heavy fatigue but the postdrome lasts from 1 week to right now the longest was 1 month postdrome of just fatigue, ligthheadedness and just general sensitivity to light that slowly goes away

On ajovvyy after my third and most recent attack and my pain specialist doctor said that ajovvyy is like a miracle drug

But what i see on everyone here is that it works for chronic VMs but never really heard of anyone that took this with episodic VMs.

Anyone here with episodic VMs can chime in

even better if anyone has eventually weaned off ajovvy(its pretty expensive and a hassle). Doctor said that he will slowly increase the timing inbetween each injection and see how it goes. Fingers crossed.

P.s. mine seems to be triggered by super tight trapezius and neck muscles. So once it gets tight i know an attack is imminent unless I can break the cycle

Mine is episodic and all 3 times i got the attack(which will last close to a week and then i feel off for a month ish) was due to poor posture plus my large backpack causing neck and trap tension

And for those like me did anyone go into remission after fixing these

I found out i got TMJ about a few days back after 3 weeks of the most excruciating headaches thinking it was migraines

I got a steroid injection at the tmj and holy shit my pain just disappeared.

My neurologist and i are now waiting for insurance to approve my botox on masseters and my temporalis

- the pain from tmj joint has disappeared but my temporalis pain and ache is still there. Plus pain behind the eyes and such

Im constantly sleepy and yawning and feels like i got a hangover the whole time past few weeks and the days seem blurry to me

Anyone has any suggestions or experiences?

I know this all stemmed from a bad posture in general issue which made the tmj worse due to migraines from posture but man this really sucks and im kinda pessimistic by nature and cant imagine working like this

I had 3 VM attacks in the span of a year, first one was first week of vertigo, followed by lightheadedness for another 2 weeks and then just poor tolerance for excercises lasting about 3 weeks after so it was a 6 week recovery

second one was just 3 days of vertigo, then about a week of lightheadedness and then recovery by the third week

the most recent one, vertigo lasted about a day, then extreme fatigue and lightheadedness for about a week and then its been off feeling for the next 2 weeks ish

so im at week four of my most recent one. And it seems like the longer the attack the more severe the postdrome. This one was particularly bad even tho its my first time on rescue meds. at the week 4 mark im having tension headaches and neurologist said during postdrome we are more succeptible to migraine attacks.

Anyone has a way to break the postdrome

side note started vestibular physio 3 weeks back, and also did a ajovvy jab and am on nightly flunarizine. My prodone all 3 times were really tight neck and traps which led to the attack so neurologist said physio should prevent future attacks along with weekly massages and stretching daily. but sheeeeesh

This is my third VM attack in about a year?

Same prodone of tight shoulders neck and traps for 2 weeks followed by a sudden intense vertigo for a week then the lightheadedness slowly fades over 2-3 weeks so from vertigo attack till i feel functional its around 3 weeks usually

Im past the attack phase and i finally saw a neurologist. He gave me betaserc, cinnarizine for the vertigo and also zomig for the headaches and light sensitivity.

Past two times i just raw dogged the attack with no meds and so this time with meds i expect the attack to be shorter but im nearing the end of week 2 since the attack and i still feel like shit.

Looking at my pc doing work hurts andmakes me super dizzy

Anyways he referred me to a physio and was wondering how good it is?

So in short, It started in December after antibiotics and a GI bug, then colonoscopy and endoscopy with biopsies in jan. And then started cholestyramine in march which alleviated my symptoms.

link to my original post here

https://www.reddit.com/r/ibs/comments/1sovliv/bam_due_to_dysbiosis/

Some other notable tests

SIBO negative

Chromagranin A negative

Celiac Negative

Negative for parasites

Negative for H pylori or pathogens

We did a bunch of blood tests and basically my liver wasnt overproducing bile, and my terminal ileum was undamaged so bile absorption was not an issue.

The only thing left was a microbiome cause.

I did a microbiome test and it showed that the abundance of bacteria groups responsible for bile acid deconjugation is very very very low.

so bingo! Found the cause of my BAM. Not because i overproduced bile, not because i do not absorb enough bile but the bacteria in my gut that converts the bile acids into less irriating forms are not there.

Which means that this seems way more reversible than I thought it was. So all i gotta do was to take very very specific strains of probiotics to get back the bacteria responsible for bile acid deconjugation. The alternative is Fecal Matter Transplant but that has a 50/50 chance of working and isnt covered by insurance if its not for recurrent c diff(which i do not have) and im not too keen on seeing how there are some risks to it

ANYWAYs my best friend claude after a bunch of prompts(im a prompt engineer) came up with very very specific strains that only target the issue

1. L reuteri LRC (NCIMB 30242)

2. L Reuteri DSM 17938

3. L Reuteri ATCC PTA 6475

4. L plantarum 299v

As a side note, i will be taking psyllium husk powders, and also resistant dextrin prebiotics with the probiotics above and also will be incorporating MISO into my diet.

will be having oats mid day and some under-ripe bananas for MAXIMUM effect. So fingers crossed.

I found and ordered these specific probiotic strains and will be taking these daily for 5 months before doing a gut microbiome test again -the same one and seeing if the bacteria that deconjugates bile acids have increased and if I can taper my cholestyramine

ANYWAYS if by month 5 no significant changes have been done then Im just gonna do a FMT and then hopefully not have to be on cholestyramine anymore. I travel often and its a nightmare to be always paranoid mid flight checking and making sure i packed my cholestyramine.

Will be updating month by month how I feel here or if any symptoms pop up