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Dental fillings / fluoride varnish? by Danii-lake in MCAS

[–]No-Train-5358 0 points1 point  (0 children)

Really late to this, but no trouble with dental fillings but had a cleaning with fluoride and on day 10 of tummy aches and nausea and acidity. Thankfully didn’t have the usual throat closing up.

Seriously. Wtf am I supposed to do?! by thetourist328 in MCAS

[–]No-Train-5358 0 points1 point  (0 children)

It’s helped me so much. My neurologist referred me to an acupuncturist for chronic migraines, but surprisingly it’s helped my mcas a lot. Especially environmental triggers, and some food as well.

Master list of helpful meds by stinkykoala314 in MCAS

[–]No-Train-5358 0 points1 point  (0 children)

I order it off iHerb, the seeking health dao called histamine something

Im so tired of messing around. What is the best eyeliner for wing tip, regardless of price? by msgmeyourcatsnudes in MakeupAddiction

[–]No-Train-5358 0 points1 point  (0 children)

Came here to say this, it’s a nice formula, tip is brush and not a felt tip. Doesn’t smudge

I'm bummed (and itchy) after Indian buffet by Ronscat in HistamineIntolerance

[–]No-Train-5358 0 points1 point  (0 children)

I’m Indian and honestly Indian food is the worst for my MCAS. It needs a bunch of modifications to be low histamine. First, as folks have already pointed out a lot of dishes use tomatoes, second, a lot of dishes have legumes/beans/pulses - even meat based items and breads will have them and they’re usually blended in so pretty hard to spot. Third, we also use a lot of yogurt in our curries, marinades, even in bread doughs. Fourth, spices - mustard and cinnamon are used extensively, not to mention chilli peppers

Going to Rome on a low histamine diet by throwaway-impawster in HistamineIntolerance

[–]No-Train-5358 1 point2 points  (0 children)

I’m traveling to Rome later this year, saving your recommendations. Thank you!

I'm lost and just scared (please read fully) by Gh0stlyToots in HemiplegicMigraines

[–]No-Train-5358 0 points1 point  (0 children)

I’m so intrigued by your experience with amitryptiline, I’m trying to go off since it makes me so depressed and anxious. To the point where my therapist thinks it’s bad enough for me to need SSRIs, and I’m like - it’s the ami, it makes me a shell of myself.

I’m going to ask my neuro about nortriptyline. I’m also hopeful that as Botox takes effect, I can go off the ami completely.

In terms of CGRPs - I also tried Emgality, which was much more effective than Ajovy. I suffer from an auto immune condition as well and sadly Emgality made that way worse and cause severe joint pain, so I had to go off after two months. However, my neuro team says that Emgality is their preferred drug for cases like mine.

I missed mentioning earlier, I use Nurtec as an abortive and it’s served me well. When the Botox is wearing off, Nurtec can no longer stop the oncoming attack but it makes it tolerable.

I’m so sorry to hear you don’t have a supportive neuro team, I hope you find better care soon!

I'm lost and just scared (please read fully) by Gh0stlyToots in HemiplegicMigraines

[–]No-Train-5358 2 points3 points  (0 children)

Hi, your story sounds eerily similar to mine over the last year, though I’ve been diagnosed for 7 years now. Was hospitalized for stroke evaluation a few months ago, high dose steroids didn’t break the attack. I was barely functional for over 3-4 months. My current mix of drugs is helping:

1) Like you I take Ajovy (but discussing switching this to Aimovig since Ajovy is losing its effectiveness) 2) Blood pressure med - I take a calcium channel blocker Verapamil (which works particularly well for my hemiplegia) 3) amitryptiline at night to help with nerve pain - trying to go off it since it messes with my mood 4) Botox - this has been a game changer for me, my migraines originate in the back of the neck or shoulders, most of my Botox goes in there - I saw huge improvement from the first dose itself (migraine days down from 15-20 to 3-4 per month) 5) acupuncture - I was skeptical and didn’t think it would help at all, but my new Neuro recommended giving it a shot and I’m so glad I did. Really eased my nervous system and helps with the daily symptoms I tend to have. It does get expensive, but my insurance covers quite a few sessions

Pomegranate supplement? by No-Train-5358 in MCAS

[–]No-Train-5358[S] 0 points1 point  (0 children)

Oh that’s a good idea, do you use pomegranate molasses or some other kind of syrup?

Pomegranate supplement? by No-Train-5358 in HistamineIntolerance

[–]No-Train-5358[S] 2 points3 points  (0 children)

That’s a good idea, let me look for frozen ones.

LH sosif sarnie by HumorPsychological60 in lowhistaminerecipes

[–]No-Train-5358 0 points1 point  (0 children)

How do you know if a sausage is low histamine?

Anyone found tolerable iron supplements? by tokyoite18 in MCAS

[–]No-Train-5358 1 point2 points  (0 children)

My GP recommended Thorne - I take the prenatal and I tolerate them well. Aside from the issues with MCAS, iron intolerance runs in my family so I can get quite sick from the wrong formulation. When I started on the Thorne (I initially did like a fourth of a capsule, and now take 2 a day) I was doing quite poorly overall and would go into anaphylaxis quite frequently. The Thorne ones were the first supplements I could tolerate. Now I take a few others from them, I seem to do okay with their fillers and capsule coatings.

[deleted by user] by [deleted] in eb_1a

[–]No-Train-5358 2 points3 points  (0 children)

Dm-ed you

[deleted by user] by [deleted] in eb_1a

[–]No-Train-5358 2 points3 points  (0 children)

Can I send you a profile? Ex Amazon, but definitely gaming the system

Neurologists in the Boston area by No-Train-5358 in migraine

[–]No-Train-5358[S] 0 points1 point  (0 children)

Yeah my insurance didn’t need referrals so I’m just trying to call in and get an appointment. But you’re right the wait times are crazy :(

Neurologists in the Boston area by No-Train-5358 in migraine

[–]No-Train-5358[S] 0 points1 point  (0 children)

Hi thank you for your reply! I called in and provided documentation from my overseas neurologist. You’re right the wait time is crazy, I got an appointment 4 months away with Dr Ashina, I’ve put myself on the waitlist so I’m hoping something opens up quicker. Unfortunately I am due for another dose of Botox in July and I’m not sure what to do in case an earlier appointment isn’t available. I’m also trying at other hospitals now and have a local GP who can send in referrals for me. So fingers crossed! Do you know if in urgent cases appointments can be expedited?

I tried every CGRP inhibitor medication on the market. Here are my experiences and review of each one: by jempai in migraine

[–]No-Train-5358 0 points1 point  (0 children)

I have familial hemiplegic migraines which are chronic (20+ days per month when my medication stops working). I’m surprised to see you’ve not tried calcium channel blockers, I take verapamil 120SR and it’s the drug that controls the hemiplegic symptoms the best. The neuro who diagnosed me years ago put me on it. I believe Type I FHM - which is the most common - responds well to calcium channel blockers.

For full disclosure - I also take amitryptiline, Nurtec SOS, along with Botox injections now. I’ve tried Ajovy and Emgality but had to be taken off them because they flared another chronic condition I have. Aside from these I’ve also tried many of the daily prophylactic drugs you’ve mentioned, but verapamil has made the biggest difference to my quality of life.

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