u/chronically-badass

Has anyone researched or talked with a doctor about why we overproduce CGRPs and what, if anything, helps that not happen (besides this class of meds, which I love lol)?

I've had a status migraine for 4 months straight and ajovy, nurtec, qulipta and steroids help halve the pain for a few days then it comes back bad. I know part of it is just the more the nerves get sensitized the more you get a migraine and it's a huge cycle, but the WHY of it all is driving me nuts.

I'm also trying mag, b2, PT, acupuncture, memamtine etc but like whyyy 🙃 I have MANY other chronic illnesses - post EBV RA, Endo, PCOS/IR, EDS, mysteriously high RBC and WBC, H-EDS, waiting to get my hyperkinetic gallbladder removed, and I can't help but wonder if they're related at all. Just curious if anyone else has figured out anything or if there's research on this.

They're processed on the same liver enzyme so potentially you could end up with extra of one or the other in your body. No way to know though!

do you find qulipta more or less effective with CBD? CBD is the only thing that helps me sleep through the night (with a little thc) after decades of severe insomnia.

but I'm also trying to break a 4 MONTH status migraine while managing a ton of GI crap. So I'm not trying to take 60mg of qulipta in the evening before my CBD. already failed a bunch of other meds. thoughts or experiences??

I have what I suspect is intestinal pain from my hyper gallbladder (94% EF) and I guess too much bile - left side of the belly button, sometimes into the side and back, worse with food, worse when laying down. And lots of gas and naseau. I've had it off and on all year, and my gallbladder is often uncomfortable but no attacks since I went low fat. Honestly the pain has been so much worse since my HIDA scan and my surgery consult isn't for another month.

I've been given PPIs at urgent care, Tylenol, zofran, gas x, but nothing helps, has anyone found anything that helps? My labs and imaging are always great. Is there anything that actually helps the pain?? I can barely eat or sleep and I can't afford the ER again.

My drs are not super supportive of removal, 94% EF, they say there isn't much evidence for it especially since I'm not in debilitating pain all the time (because I don't eat much fat since my actual attack a year ago??) and because my liver and pancreas numbers are normal.

My left side pain that was replicated during the HIDA scan is actually worse than the pain where my gallbladder is. I don't get attacks so much as muscle cramp or heartburn feeling in the RUQ. I've also had elevated WBC for a decade (13) that nobody can pinpoint (I am immunocompromised so I would know if I had an actual infection) and I wonder if my gb is inflamed or something. I've talked to like 3 GIs and many ER doctors and nobody has heard of dyskenisia before, I feel crazy.

my surgeon referral is not until the end of August :/

I've tried via Amazon and Walmart and the DVDs never ship. i can't find anything from Syfy.. I'm trying to get them for a family members birthday and also myself lol. Ideas? I'm in the US

I have weirdly high blood pressure sometimes and am avoiding cgrps. I have a status migraine for over 3 months now. Steroids and ER etc didn't work. We tried trileptal but it gave me heart palpitations. Specialty migraine office recommended candesartan, but I can't take it because I need my gallbladder out. then she recommended effexor but it looks like that can cause both hypertension like cgrps and low sodium like the trileptal. So fuck, IDK what to do, I waited months for that appt and I know they don't even like it when you message them about stuff like this 🙃 I see my PCP tomorrow but she's just a PA and also doesn't know what to do.

This specialty neuro and my neuro do not believe in short term medications to break status migraine, only adding another daily med to continue preventing them, which I think is fine in theory but like. Nobody is taking my side effects and medical complexity into account and I still have a headache?? it's getting slightly better with physical therapy but not very quickly. I'm running out of FMLA and if I lose my job we are homeless, I'm losing my mind. Any thoughts or ideas welcome 😭 or if you've done effexor if you have pots what was your experience?

My triosmart calls for 30 days off of probiotics beforehand but yogurt is one of the only safe protein options I can stand 😭 is there a test that doesn't require this?

Anyone with hyperactive gallbladder forced to go through a gastric emptying study, sibo test, and upper endoscopy/colonoscopy before getting a surgery referral??

I was referred to a neurogastroenterologist for RUQ and middle/left abdominal pain, and despite a 94% EF HIDA scan that replicated ALL my symptoms, i think he's going to make me do all this before getting a surgery referral. Which will take SO LONG.

honestly I can't stop crying about it, I'm so miserable, not being able to eat any fat is making me crazy because I'm prediabetic, if I pay for the GES (800$) I won't be able to afford surgery, I'm out of pto, and yogurt is one of my few safe foods and you have to go off of it for 30 days to do the SIBO test. I've also had a migraine for 90 days straight and the not eating much thing is making it worse. IDK what to do, this doctor is super strict. my PCP is a PA (the only provider in town) and she always defers to the specialist and probably won't refer me to a surgeon. I'm already using up FMLA because of this migraine. I'm also a caregiver and my partner is suffering because I can barely function. IDK what to do 😭

Finally dx with hyperkinetic gb 94% EF. Last time I took my iron supplements I had a VERY bad attack/worsening of gb sx even though I took it with a full meal like always, almost went to the ER from left side abdominal pain and some RUQ pain, severe mattress that took 2 weeks of Tylenol to calm down. Has this happened to anyone else? have you found an iron supplement that doesn't stimulate the gb?

what's weird is I've had acute gallbladder symptoms off and on for almost a year, taking iron for a few months now every other day and sometimes it makes me a tad nauseous this was bananas.

My partner was told to stop her HRT (estradiol injection) a few weeks before her ankle surgery due to clot risk. Her surgeon said endocrinologist should advise on when to restart it, and now the endocrinologist is refusing because she didn't tell her to stop it in the first place. after her bottom surgery I gave her her shot within a few days of coming home, less than a week. it's been a week since surgery, has anyone been in the same position? If it's just the clot risk (which I know is higher for orthopedic surgery) can she get just get up and walk every hour. God I hate Kaiser so much.

Having a real bad time of it health wise and with luck in general ever since we moved almost a year ago. have some black salt been meaning to use since winter solstice and I'm having a hard time thinking of how to use it in ritual, spellcraft etc? I've had a migraine everyday for months now and it's really severing my connection to spirit and creativity.

I see a lot of folks saying they had left/flank pain that resolved after getting your GB removed, but did you figure out what caused it??

I have suspected dyskinesia but the left sided pain left of my belly button seems to have even the most specialized specialists mystified and they insist getting my GB removed won't help. Awaiting my hida scan while my gb hurts constantly, and high RUQ pain is almost always followed by left side pain, the idea that they can't possibly be connected is driving me nuts.

wasn't sure whether to tag this questions or (suspected) biliary dyskinesia). I have some left over bentyl for endometriosis. Would you try it? last time I took it made me very very woozy. I

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10 days until my hida scan, ER said I'm fine but I had constant nausea and feeling sick, fatigue, and often feel my gallbladder Doing Something Painfully, then I'll have stomach pain and gas soon after. can't eat, can't sleep. Everyone says Tylenol zofran and hida scan (3 clear ultrasounds, CT scans and X-rays over the last year including last week at the ER). I'm a little concerned as the Zoloft is making me a bit constipated but honestly I'm so sick and worried and losing my job (already on FMLA for asn ongoing status migraine and out of PTO).

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Any GI or surgeon recs in Contra Costa/Alameda/Solano/Marin counties CA. John Muir health system reviews?

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Saw one GI dr who, when I asked for a hida scan per my pcps advice, referred me directly to Sutter San Francisco Neurogastroenterology for the left and URQ side pain I've been having (at first more traditional attacks by now constant pain and nausea, clear scans x3). I'm supposed to get my hida scan in 10 days but IDK how I'm going to make it that long without losing my job. I'm thinking of asking my PCP for a different provider/want to have a surgeon on hand for referral

post op folks would you recommend trying to have a strong core before surgery?

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I have HEDS and am very out of shape and I just realized that my usual low and upper back pain are probably not going to be helped by surgery whenever it does happen

After intermittent GB pain but mostly left side pain starting last fall, I've started teaching constant RUQ and LUQ pain, nausea, stomach pain, middle right side pain and a ton of burping.... went to the ER thinking something MUST be wrong especially the chest pain. But no, everything looks fine even my liver enzymes and WBC. I'm pretty medically fragile and on immunosuppressants so if something was urgently wrong it would show up. this is my 3rd normal ultrasound and 2nd clear CT and X-ray.

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how are you guys surviving until you can get a diagnosis or help??

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i can't take nsaids, Tylenol has significantly helped in the past but isn't now (yet anyway). I'm going back to a low fat, low fiber liquid diet which helped last fall. Gasx as much as possible. I'm already on protonix. metamucil also used to really help the nausea but isn't now. i have zofran, and I have tizanidine for migraines (which I have had for 3 months straight now, is it related who knows).

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what else can I do? I can barely function eating small meals often with ensure. my doctors say there's nothing to be done until I get my HIDA scan or show signs of something more serious like sepsis or cirrhosis.

Just wondering what people's experiences are? I usually get pretty sleepy from CBD+THC 20:1 and even CBG with a little THC and it helps me sleep through the night. I don't think the oxcarb is going to make me quite sleepy enough to sleep though the night though. I'm still seeing if there are side effects by itself/with my other meds, but if not are you able to take edibles?

Status migraine for a few months, trying ajovy and nurtec (and steroids, muscle relaxers, Tylenol, I can't), and the nurtec initially helped noticably but now isn't really, and I didn't notice much with the ajovy but my dr said it can take up to 6 months to work. (Awaiting a specialty clinic referral). Its better every morning and worsens throughout the day, face/scalp/neck, throbbing etc

I've also been seeing a physical therapist (I have hEDS) and acupuncturist, and the other thing that helped initially was trigger point needling, and what REALLY helped was my PT doing manual trigger point release, WOW. She said my neck was so tense she couldn't feel a pulse in my head before but could after, and the brain fog is mostly gone and the pain was cut in half.

She has small noticed that my blood pressure is up - 130-165/80-105. My GP thinks this isn't enough to not take the cgrps but I'll ask my neurologist if that's a concern, but it takes her 7-10 days to respond to any messages.

Now I'm wondering if I should bother taking my 2nd ajovy. I stopped taking the nurtec every other day as the dr rx because I didn't notice a huge difference. If the problem is muscle tension (or partially tension) would that make it worse? Ugh. I hate this. My PCP wants me to try trileptal since I have so much face pain (and fluid filled ears for months, that's probably not helping) and neuro has washed her hands of me.

Status migraine vs trigeminal neuralgia?

I've had what I thought was status migraine for over 2 months but my PCP suggested TN because I've had inner ear problems for a while maybe irritating the nerve.

I have dull pain across my forehead and temples, neck, no pain with touching my face, sometimes sharp pain at one temple when it's really bad but not often. Scalp pain and sometimes throbbing pain. It is better when I sleep, better in the morning and gets worse throughout the day daily, and gets slightly better with trigger point work. And brain fog and anxiety as the day goes on usually. Sometimes the CGRP inhibitors help, sometimes no.

IDK, does anyone have symptoms like this and a confirmed TN case? It's 3 months to get into the specialty headaches clinic 😭 my PCP wants me to try trileptal. I'm also wondering if it can have multiple causes since it is responding to different treatments (vasoconstriction vs increasing blood flow) in different ways.

Status migraine vs trigeminal neuralgia?

I've had what I thought was status migraine for over 2 months but my PCP suggested TN because I've had inner ear problems for a while maybe irritating the nerve.

I have dull pain across my forehead and temples, neck, no pain with touching my face, sometimes sharp pain at one temple when it's really bad but not often. Scalp pain and sometimes throbbing pain. It is better when I sleep, better in the morning and gets worse throughout the day daily, and gets slightly better with trigger point work. And brain fog and anxiety as the day goes on usually. Sometimes the CGRP inhibitors help, sometimes no.

IDK, does anyone have symptoms like this and a confirmed TN case? It's 3 months to get into the specialty headaches clinic 😭 my PCP wants me to try trileptal. Any insight helps thanks!