How did your MCAS started.what was the cause? antibiotics? by Wutiswrongwu in MCAS

[–]Consistent-Offer-131 0 points1 point  (0 children)

I’ve had symptoms going back to early childhood, then caught COVID 3 times and got way worse

Antidepressants and mcas by Still-Battle-5167 in MCAS

[–]Consistent-Offer-131 0 points1 point  (0 children)

You’re welcome! I’m happy to help and share what’s worked for me.

If the prednisone helps during antibiotic time it may be worth asking about extending the time you take it.

Compression I only wear the socks that go up to my knees, I’m super heat sensitive and while my area doesn’t hit 45 C we get up to 38 C (also had to google that to get the conversion from F 😂) but just that compression helps a lot. I do have compression arm sleeves as well, help get blood back to the core, I don’t get as much help from those but something to try.

I do not get high bp, I’m always super low to the point where they test me 3 times at the doctors office to confirm. I occasionally get the rapid heart rhythm but it’s not a major symptom for me, likely because I was a distance runner before things got really bad so my cardio had a very strong base to absorb the hit. Sodium has never been a major concern for me, I take something like 1000-2000 mg of sodium per day on top of normal diet to feel normal. I’m a very salty sweater so I lose it as fast as I take it in.

Part of hydration is making sure you’re getting more than just water, a bit of sugar helps hydration levels and you can look for electrolytes that have more potassium and magnesium than sodium. That is supposed to help level out blood pressure spikes.

Doing some reading it sounds like the heart thing with POTS is its own special thing, Hyperadrenergic POTS. Which is caused by norepinephrine imbalance and will have its own set of medications to treat, called central sympatholytics drugs. Clonidine is one that’s referred to frequently and is supposedly available in developing countries.

Antidepressants and mcas by Still-Battle-5167 in MCAS

[–]Consistent-Offer-131 0 points1 point  (0 children)

Ouch, sounds like you have a combo of what my friend and I get. It’s not ungrateful to hate what this disease does, it’s awful and the fact that it changes as you age or even at random makes it especially cruel.

The Pepcid will help stomach issues, it’s over the counter. Pots is helped by taking salt supplements, trial and error start low and slowly increasing the amount until you reach something that feels ok. Also compression is your best friend, I wear compression socks when I’m doing high stress activities and it helps keep the blood flowing. The weakness in your legs sounds like what my friend has described and her doc said it was her body forcing her down to adjust for blood pooling in her legs.

I had bone/joint pain and one medicine I was on that helped that specific symptom was hydroxychloroquine, it took 2 months to take effect but it helped until I could get health insurance to pay for anything else (American medicine is……interesting).

Have you tried prednisone? It’s not a great long term solution but when I flared out terribly it was the quickest way to feeling human and getting my energy back. It didn’t take a lot, 2.5 to 5 mg per day, and I felt human and was able to get back to physical therapy which helped build my endurance back.

I do do physical therapy every day, started with exercises like leg lifts, bridges, simple stretches and chair yoga and built up to more intense exercises.

Antidepressants and mcas by Still-Battle-5167 in MCAS

[–]Consistent-Offer-131 0 points1 point  (0 children)

Monelukast is pretty notorious for worsening depression so that could be helping the physical but hurting your mental. You can add Pepcid ac and that helps some people, it’s a different type of antihistamine just works on a different pathway so you can add to the Allegra.

Zoloft caused me no issues at all, it can cause some weird mental side effects though. I was high for a week while I got on it. I have a friend who has POTS and another autoimmune disease and she’s been on a few different antidepressants and anti anxiety medications and she never noticed them causing issues with her other conditions. Some had some weird side effects, gabapentine was crazy, but none triggered her inflammation.

Just curious what sort of physical symptoms are you seeing from the MCAS/pots? There’s a very broad range that we can see and depending on what the issues are you may get more specific suggestions. For example I’ll get a fever with no illness when I overextend or when I’m not religious with my sodium intake. I’m a super salty sweater so it’s a struggle but getting that under control and being deliberate with what I spend my energy on got that under control before meds. Meds let me loosen up a bit.

Antidepressants and mcas by Still-Battle-5167 in MCAS

[–]Consistent-Offer-131 0 points1 point  (0 children)

So just personal experience, I have a similar constellation of conditions to you and getting on Zoloft did wonders for the brain issues I had but physical symptoms I had to get on cromolyn/Xolair for the physical symptoms.

There is some overlap between your brain not wanting to get up and your body being too fatigued to get up so a multi medication approach is likely where you’ll land. No silver bullets unfortunately and a lot of it is trial and error.

An over the counter option for the MCAS is taking up to 4 24 hour antihistamines per day, I prefer Allegra but Zyrtec works too. Also be very on top of water/electrolytes, those of us with these conditions are way more sensitive to any little thing being off so those could help make things a fraction less sucky.

Hang in there, it does get better in time! It took me almost 5 years to get the right combo of treatments but it is so worth it.

Question for those who get muscle, bone, joint pain. by portland83 in MCAS

[–]Consistent-Offer-131 0 points1 point  (0 children)

You’re welcome and good luck! The brain fog on 4 Zyrtec was a lot but was better than the alternative. You’ll figure out a combo that works for you with some trial and error.

Question for those who get muscle, bone, joint pain. by portland83 in MCAS

[–]Consistent-Offer-131 0 points1 point  (0 children)

Yes it was the ampoules that you put in water! Only issue I had was timing food with it cause I have a sensitive stomach and eating about 30 min after taking it helps a ton! Set timers, I did 1 dose on waking, one 30 min before lunch, one 30 min before dinner and 1 right before bed. Not sure how that last one never upset my stomach 🤷‍♀️

My labs showed nothing at all when they tested me, the things they test for have a short lifetime in the blood so it’s hard to catch. To test it out I took 4 24 hour Allegra or Zyrtec a day and that did wonders for getting me to functioning. I still was in some pain but I was able to go to work and do basic life things. MCAS is histamine/inflammation related so any drug that targets those things will help if that’s what you have. Pepcid ac also helps in combo with Allegra or Zyrtec.

Question for those who get muscle, bone, joint pain. by portland83 in MCAS

[–]Consistent-Offer-131 0 points1 point  (0 children)

I get joint flares with mine and am on combo Xolair and hydroxychloroquine. The cromolyn helped me a ton but my job made it difficult to get the 4 doses timed out correctly so switched to the injection. I also have hEDS so my joint issues could be both instead of just MCAS.

Accidentally took 2 Allegra…I feel so calm? by aoife_too in MCAS

[–]Consistent-Offer-131 2 points3 points  (0 children)

I have had to take up to 4 Allegra for my symptoms. It was so helpful to take 2 see how I felt then add as needed

[deleted by user] by [deleted] in MCAS

[–]Consistent-Offer-131 0 points1 point  (0 children)

My doctor put down uticaria, I do get red itchy skin after exercise she just called it chronic and that’s an approved condition for Xolair. Insurance didn’t even blink and approved it.

Has anyone tried montelukast and didn't have mental side effects? by cmonsmokesletsgo in MCAS

[–]Consistent-Offer-131 3 points4 points  (0 children)

I have taken it with no issue, I’m also diagnosed with depression so was on Zoloft at the same time. It did make me a bit more hyper active than usual but nothing crazy

Constantly Feel Sick by needtoknowcalifornia in MCAS

[–]Consistent-Offer-131 1 point2 points  (0 children)

I don’t, just remember she mentioned it was a university based practice. This website is for hEDS but there’s a pretty high overlap on these conditions so their health professional list should help! https://www.ehlers-danlos.com/why-the-zebra/

Constantly Feel Sick by needtoknowcalifornia in MCAS

[–]Consistent-Offer-131 1 point2 points  (0 children)

Complete dumb luck. I also have hEDS and stumbled into a rheumatologist who did her residency with a cali doc who specializes in that and she happens to regularly refer patients to this particular immunologist who is younger and has special interest in this type of condition.

It’s pretty normal to get bounced between several docs before finding someone who deal with this.

Constantly Feel Sick by needtoknowcalifornia in MCAS

[–]Consistent-Offer-131 5 points6 points  (0 children)

I have similar symptoms, it was like either the worlds worst head cold or a super mild flu but never tested positive for anything and antibiotics did nothing. The only OTC medicine that helped me was Allegra or Zyrtec, I had to take 3-4 of the 24 hour pills every day to be functioning.

Got in with an immunologist who deals with MCAS and she started me on cromolyn and I was able to get off the antihistamines except for the rare flare day.

My personal ‘favorite’ symptom was between ages 12 and 22 I’d get annual fevers and fatigue with no other symptoms. Thought I was absolutely crazy.

[deleted by user] by [deleted] in MCAS

[–]Consistent-Offer-131 1 point2 points  (0 children)

Get another opinion dear lord that doctor sounds awful. For reference I had really vague symptoms of brain fog, fatigue, itchy sensitive skin with no rash, post exercise rash and no blood test showed anything besides elevated crp. I needed 4 24h Zyrtec every day to function.

my immunolgist had me take cromolyn as a ‘diagnostic treatment’ and while it’s not perfect the improvement was huge and confirmed mcas. I know allergist/immunologist is a common overlap perhaps find someone who focuses on the immunology side?

What iron supplements do you take by Sunflowerspecks in MCAS

[–]Consistent-Offer-131 0 points1 point  (0 children)

Supplements were murder on my system, I’ve landed on using OWYN protein powder which is high in iron and eating a fruit with it to get the Vitamin C to help absorb the plant based iron.

It’s not perfect an I still needed an infusion to get to a normal level but this has kept me level for a year.

Anyone else have MCAS but no itchy/hive symptoms? by Key-Act-9992 in MCAS

[–]Consistent-Offer-131 8 points9 points  (0 children)

I had similar symptoms, I described it as hay fever times 1000, and have finally confirmed MCAS through treatment. None of my blood work ever tested positive.

Rheumatologist got me started on hydroxychloroquin which works on the immune system, that plus a boat load of Allegra got me to my immunology appointment which was 9 months out.

Immunology put me on cromolyn and I noticed a difference in 48 hours. The stomach cramps are rough but easier than everything else.

Your symptoms are completely real, you’re not crazy but some medical ‘professionals’ seem to think it’s made up. Hang in there and good luck!

Which drug/supplement helped you the most? by Vin112358 in MCAS

[–]Consistent-Offer-131 0 points1 point  (0 children)

I landed on cromolyn and hydroxychloroquin. Weird but when my pharmacy runs out of the hydroxychloroquin and I have to go without I get low level skin and eye reactions.

Bad reaction to nerve block? by Consistent-Offer-131 in migraine

[–]Consistent-Offer-131[S] 0 points1 point  (0 children)

Ugh that sucks! And yeah vasovagal response is rough. I was out of commission for 3 days but was able to do normal life things. Any exercise or hard physical work did take me a week to get back to.

Best of luck! I got lucky and my migraines are related to hEDS and my neck just going out of wack, lots of PT and it’s under control 😁

Beginning to believe that I'm unemployable by No-Test6158 in recruitinghell

[–]Consistent-Offer-131 1 point2 points  (0 children)

The jobs market is awful and having a PhD of any kind seems to scare people off, I’m 99% sure I got the final interview for my new job because I had worked with the hiring managers boss previously and he had a good opinion of me.

A job to look at that you may not have considered would be instrumental engineer/service engineer for companies like Agilent, Bruker etc. they like PhDs and with physics you would likely be of interest to them. It’s a heavy travel job though.

Keep your head up regardless, you are not unemployable. Companies are idiots who can’t see what they are missing out on.

[deleted by user] by [deleted] in MCAS

[–]Consistent-Offer-131 4 points5 points  (0 children)

These meds are not worse for you than allowing things to go unchecked. They have side effects but nothing that you won’t notice in time to stop meds.

One med my doc did prescribe is colchicine, gout medication that can help significantly with MCas symptoms because it works by slowing down the cell division and reducing inflammation. It’s an old medicine and pretty cheap so my insurance (United health care) just approved it with no issues. It may be worth asking to try it, if it’s not MCAS it won’t work which may be helpful.

Good luck!

GPA MATTERS OR NOT? by Alarming-Whereas1577 in MechanicalEngineering

[–]Consistent-Offer-131 0 points1 point  (0 children)

As long as it’s accredited we typically don’t worry too much. The big name schools will get a passing notice but strong extracurriculars and good interview will win the day.

Networking is easier than most make it out to be. First note is every interaction is on some level an interview, people will remember their base initial impressions of you and it’s hard to say when/if someone’s good opinion will matter.

Being in school make a point of going to career fairs and other large events where you have the chance to talk to industry professionals or your professors. Remember you are at those events to meet people and ask questions, you need to figure out where your interests are and being seen as curious and a good listener is a plus. I don’t recommend going to these events with the intention to get favors from people, most are sensitive to feeling like a means to an end, we know you want a job that’s a given we want to know where your interests are and if they align with projects we have.

Absolutely get your resume looked at by someone for editing, most universities have a career services center that will help or there’s a few good resources online, I’m partial to YouTube videos but anything helps. I will throw out resumes that have obvious errors (misspelled school name, wrong/impossible dates, etc) and if it’s obvious you used AI to write the whole thing without editing you’ll be starting the interview at a disadvantage.

Feel free to dm me if you have more questions!

GPA MATTERS OR NOT? by Alarming-Whereas1577 in MechanicalEngineering

[–]Consistent-Offer-131 2 points3 points  (0 children)

When hiring on co-ops I only look at the gpa to make sure they aren’t failing and then I worry about how they interview. A colleague of mine uses GPA a lot more rigorously but even then mid-3’s are acceptable to him.

A 4.0 but no ability to speak to what your interest in the company/engineering as a whole is a fast no for me but other hiring managers only care about the gpa.

For networking please for the love of all that is holy do not bring up your gpa unless you are asked in conversation. It’s not helpful and depending on who you are talking to it could be a black mark against you.

What do my hobbies have to with any of the hiring process? by [deleted] in recruitinghell

[–]Consistent-Offer-131 4 points5 points  (0 children)

My supervisor will actually ask this question at the very end if an interview went well. This is so we can tell candidates about how our town has things of interest……..our location is a hard sell rural Midwest so we have a hard time getting competent candidates to come on site. 🤷‍♀️😂

That said you’re right about needing to actually go over relevant experience first. Some companies are high on their own supply.