u/incarnadine-clover

I’ve had chronic nausea and cyclical vomiting syndrome with my migraine for a long time. However, I cannot find an antiemetic that touches my nausea at all even Ondansetron does nothing.

I’ve found one single clinic in my country that offers ketamine infusions for chronic pain. It’s expensive and I’m not exactly in the best financial position atm. I’m trying to understand if it’s worth it as I’ve been completely refractory to everything else available and I don’t want to spend thousands on another treatment that fails.

If you’ve had infusions, was it worth it? What was the specific protocol you had?( ie dosage, number of infusions, and maintenance) please also let me know if it didn’t work for you.

Thank you 🫶

I’m in my early 20s and have intractable migraine and have developed fibromyalgia, I live with at least 7/10 pain every day, I’ve been completely unresponsive to any treatment and now the number of symptoms I experience is becoming unmanageable. I’m waiting for occipital neurostimulation implants for my migraine but the best I can expect is 30% improvement.

I’m looking for a specialist who is interested in central sensitisation, actually treating pain, and who is generally kind and empathetic.

Please help me. Thank you!! 🫶

I’m in my early 20s and have intractable migraine and have developed fibromyalgia, I live with at least 7/10 pain every day. I’m waiting for occipital neurostimulation implants for my migraine but the best I can expect is 30% improvement.

I’m looking for a specialist who is interested in central sensitisation, actually treating pain, and who might have access to inpatient infusions such as lidocaine and hopefully things like ketamine, whenever it becomes available in the future.

(Really I’d just like someone who listens and has decent communication skills. I’ve seen too many cold neurologists over the past few years that I’m exhausted with having to battle all the time. I’m in the North West but I’m happy to travel, I’m just desperate for some form of relief)

Please help me. Thank you!! 🫶

They messed up my prescription this week so I’m without medication over the weekend, this isn’t the first time for some reason the prescribers at the pharmacy make mistakes and now my nighttime strain is out of stock. I wouldn’t mind if there was an apology and it was sorted quickly but the “please wait 24-48hrs and then wait another 24-48hrs”. I think they forget this is medication, I’ve never had such issues with any other private prescription*.* Then the asking to leave a google review at the end of the email mentioning their name just ticks me off when they can’t even be arsed to reply to follow up emails or rectify issues in decent time.

I’m waiting of ONS implants at the moment but I’ve told the best I can expect is a 30% improvement in severity, and that’s a quite a rare occurrence. My migraine has even constant for coming up to 4 years and as it’s highly refractory to treatment it’s been completely uncontrolled and just developed to the point where I now have severe fibromyalgia. My migraine sits between 7-9/10 and often gets to the point where I just want to be knocked out and I’m begging my parents to take me to A&E, but they can’t as they know it will be pointless. I’m just fed up of being left to suffer like this when there treatments like ketamine are being used for refractory pain conditions in other countries while the UK is so behind.

(Please don’t offer advice on treatments or lifestyle/diets etc, I’ve tried everything)

I’m seeing a rheumatologist in September but my neurologists thinks because my migraine has been unresponsive the central sensitisation has become widespread.

Hi all, I could really do with this community’s wisdom!

I’ve had a constant migraine for 3 years, after being chronic from 6yo. I’m highly refractory to treatment so have had nothing to control my pain, I’m currently waiting to get approved for occipital neurostimulation implants.

Over the past 3 years my pain has spread, my migraine is more complex and I have TAC symptoms on top of the constant migraine and primary stabbing headache. I can’t give a full picture of my symptoms because it would take too long but my shoulders burn, I get bouts of joint pain, my feet and ankles kill, I get muscle and bone pain. When I go through a flare up, which is basically all the time atm, it’s like my migraine is across my entire body.

My neurologist has said I have “widespread central sensitisation” but does this mean fibromyalgia?

(I am diagnosed with POTs, ADHD and am being treated for suspected MCAS)

Thank you!🫶

Hi all,

My Gastro sent me to an MCAS aware dietician to try a low vasoactive amine diet. I’m into my second week tomorrow and haven’t noticed any difference to my symptoms, she said to stop if I didn’t notice anything after 2 weeks.

I really really want this diet to work, or show me something I can change or identify as a trigger. Is it possible to have MCAS and not have food sensitivities or food as a trigger?

History: my gynae, neuro, and gastro all individually suggested I investigate MCAS. I have refractory intractable migraine, joint pain, chronic nausea, neuropathy, POTs, and lots of other random symptoms. I’ve had a couple of episodes of my lips become red/itchy and slightly swollen after eating but I don’t have any other allergic type reactions.

I’m in my early 20s and seriously considering doing a medical degree. I was studying at LSE when my previously chronic migraine became constant at the start of my 2nd year. It’s been constant for over 3 years now and I’m AT LEAST a couple of years from being well enough to return to any form of academia. However, I’ve just been put on the list for neurostimulation surgery so I’m trying to be hopeful for the future!

Things are difficult with my current university, I’m not sure if I’m able/can attempt to return to complete my degree. What position would this put me in if I was to apply for medicine? Has anyone entered medicine from the same starting point?

If anyone has been in a similar position with illness or injury when did you decide you were well enough to apply?

I got A*AA (History, Maths, English lit) at a-level so no chemistry, is it worth trying to do this as an A-level before? Or, is it best to pursue an access to medicine course?

I’m also quite interested in academic medicine and maybe combining my degree with medical anthropology are there any unis particularly good for this?

Any advice or thoughts on my situation would be much appreciated.

Thank you! 🫶

In 2023-24 I was trialing CGRP medications, first Ajovy, then Rimegepant, then Emgality, then Atogepant. I had horrible side effects, joint pain, hair loss,I felt like I was on the edge of a cliff 24/7 and had daily episodes of vomiting, shaking, and crying. I have a history of anxiety and panic attacks, but NOTHING like this before. My heart rate never went below 90bpm for months. I was seen by cardiology and diagnosed with POTs last year.

Buttt I’m still left with this awful anxiety, it’s not constant anymore but if I have something slightly stressful like a train to catch, or a 15min appointment I go straight into an episode again with vomiting and profound physical anxiety. I’ve always had psychological anxiety, now i know it’s a result of AuDHD, but what’s going on feels so different from my panic attacks when i was younger. I feel like they should be out of my system by now and I’m worrying how I’m going to cope with stressful events in the future, I can’t live with tiny things triggering such an overblown response.

Has anyone had anything similar continue after stopping CGRP treatment?

I’m thinking of cutting my hair super short, currently have shoulder length curly hair. My migraine is constant so Im really limited with energy. My curls take a lot of weight off my scalp but I have constant allodynia and burning so im wondering if shaving my hair would help. Plus going to the hairdressers always sends me into a massive flare.

My only concern is that exposing my scalp to the elements will just make it more sensitive, I can struggle with the sensation of a hat on my head. Wind triggers stabbing around my eyes and intensifies the burning in my ears.

Any advice would be great! 🫶

I’d like to add a cart to my prescription mainly for discretion when out and about as I have lots of hospital visits coming up. Currently prescribed 50g a month for intractable migraine and chronic nausea with Curaleaf. I currently use 24% WPT for daytime use and ZKS for nighttime. Roughly how much vaped flower are the different cartridges equivalent to? What type of cart is best to get and has the most reliable effects?

Thank you!🙏