u/OkMastodon2674

Summary: been going back-and-forth about reaching out to one of these MCAS specialists online. I’ve kind of narrowed it down that if I did, the purpose would be to be discussing possibly getting prescribed Cromolyn. I would definitely have to pay out-of-pocket due to my really bad insurance plan, so I have to make sure that it makes sense to go down that road right now. And most of my issues are weird allergy stuff like breathing issues that have gotten worse over the past few years with environmental allergies (also perfumes, most makeup that is near my nose or sinuses, essential oils that I used to use all the time and now can’t) and I also find I have itchy skin with newly washed sheets, for example - even though I use the cleanest detergent possible (we do also use vinegar with the wash because we have to share a laundry room with other people). I also have a few places where ticks bit me, but I got them out relatively quick, but they formed granulomas that still itch even a year and a half later at times. No infection though. I have had anxiety most of my life and depression, but I do find sometimes after eating certain foods I will get an anxious feeling and that impending doom thing people talk about and/or flushing/racing heart. Klonipin stops a lot of physical symptoms (which I know is a stabilizer). Cannot tolerate any allergy meds or sprays other than Claritin (not D). Tired after eating (just saw someone asked about that on another post :))

AND this unexplainable weight gain….

I gained weight over the past several years in a weird sort of creeping way. I had gained probably 15 to 20 pounds initially (some due to going into menopause) and was really struggling to lose that weight and then all of a sudden my weight went way up around February. But more than can be accounted for due to menopause. I work out and eat very conciously and well-trying to shorten this, but there was an HRT too high dosage, and also borderline hypothyroid I’m sure didn’t help. But still this was more recent.

I’m now also using Retatrutide and I’ve lost about 20 lbs. I’m also using some peptides (KLOW stack) in the hopes that they will help inflammation/gut repair (I don’t have massive stomach issues symptoms, but some, and did do a microbiome test, which indicated imbalances… Whether those are accurate or not I still don’t know).

At this point, just really curious if one of the symptoms people have is a really hard time losing weight no matter what you do? And, if treatment helps? Since low histamine eating doesn’t seem to really cut it for me. Once I get to my goal weight, I don’t want just end up reverting backward because I haven’t addressed an underlying issue. And if it could help the anxiety to take something for this, that would be a big plus.

Hello.

As mentioned, I’m dealing with anxiety, but I have ADHD. So stimulant medications have not done well for me because although they help with focus and motivation, they increase my anxiety.

I’m wondering if people have had good results with Semax who also have anxiety. I’m wondering if it is overstimulation/increases anxiety? I also have I rumination so the ADHD meds actually help with that, so I’m wondering if Semax would help with rumination?

I’ve used Selax for anxiety and it does help to some degree.

Also, for the “sensitives” - what dose are you using? Injectable or nasal?

I have a lot of rumination/anxiety/OCD-type thinking and periods where I feel mentally “stuck” or frozen when trying to initiate tasks — even things I WANT to do. Almost like my brain hits a wall before action. Ima lap late diagnosis of Level 1 Autism. Suspect histamine issues.

Oddly, tiny doses of Adderall IR (5 mg, sometimes even 2.5 mg) help a LOT mentally:
brain feels more open/flexible
less rumination
easier to think of possibilities
easier to start things

BUT physically it can also make me feel:
* overstimulated at times (especially as if something negative happens and right now I have a family member with some ongoing health issues that are unpredictable)
*more aware of heart rate/breathing - I finally came here to post because the low dose I’m
using isn’t lasting and I tried to take 1 pill twice today (so 5 mgs and 5 mgs as the frost started to fade) and I felt like horrible once the initial good effect of the 2nd dose started to shift into heart racing, almost a dizzy or off-balance feeling, very anxious as a result of my physical discomfort (I have medical anxiety)
more anxious if life stress happens

* So it’s like it helps my brain tog I ally focus (at a time when I’m struggling to focus alot) m, as well as to override OCD-type rumination fear thoughts, but can overwhelm my nervous system.

*Crashing hard despite doing all the “things” (water, protein, etc)

I do have slow comp met/met for those who are familiar (if not it’s slower processing of medications through the liver and can cause problems with various medications building up and sort of backfiring).

I also:

tend toward anxiety/depression
am in menopause/perimenopause
exercise/eat well
am working on hormone optimization
seem very sensitive to medications in general

Have tried over the years several SSRIs, Wellbutrin, Buspar, Vraylar (haven’t done well on these - esp with weight concerns and/or increase in anxiety and/or not being able to get off the couch)

I did pharmacogenomic testing mostly out of curiosity/help with med selection (yes, I know opinions on those tests are mixed). Honestly, the only thing that works well for me is Klonopin. However I’m trying to taper off and find something else as right now I take 5 mg am and 2.5 mgs pm.

I’m curious whether people with similar “anxious + stuck/frozen but helped by tiny stimulants” experiences ended up doing better with:

*Vyvanse/lisdexamfetamine
* guanfacine
* combo therapy
* something else entirely

***big issue for me is not trying anything that people report repeatedly causes weight gain (even if the studies claim they don’t cause weight gain). I’ve been struggling for years with menapause and finally lost weight with Retatrutide but I still have some to go.

Especially interested in hearing from people with histamine/MCAS/anxiety sensitivity too because my nervous system feels very reactive.

Not looking for medical advice — just personal experiences.

I have a lot of rumination/anxiety/OCD-type thinking and periods where I feel mentally “stuck” or frozen when trying to initiate tasks — even things I WANT to do. Almost like my brain hits a wall before action. Ima lap late diagnosis of Level 1 Autism. Suspect histamine issues.

Oddly, tiny doses of Adderall IR (5 mg, sometimes even 2.5 mg) help a LOT mentally:
brain feels more open/flexible
less rumination
easier to think of possibilities
easier to start things

BUT physically it can also make me feel:
* overstimulated at times (especially as if something negative happens and right now I have a family member with some ongoing health issues that are unpredictable)
*more aware of heart rate/breathing - I finally came here to post because the low dose I’m
using isn’t lasting and I tried to take 1 pill twice today (so 5 mgs and 5 mgs as the frost started to fade) and I felt like horrible once the initial good effect of the 2nd dose started to shift into heart racing, almost a dizzy or off-balance feeling, very anxious as a result of my physical discomfort (I have medical anxiety)
more anxious if life stress happens

* So it’s like it helps my brain tog I ally focus (at a time when I’m struggling to focus alot) m, as well as to override OCD-type rumination fear thoughts, but can overwhelm my nervous system.

*Crashing hard despite doing all the “things” (water, protein, etc)

I do have slow comp met/met for those who are familiar (if not it’s slower processing of medications through the liver and can cause problems with various medications building up and sort of backfiring).

I also:

tend toward anxiety/depression
am in menopause/perimenopause
exercise/eat well
am working on hormone optimization
seem very sensitive to medications in general

Have tried over the years several SSRIs, Wellbutrin, Buspar, Vraylar (haven’t done well on these - esp with weight concerns and/or increase in anxiety and/or not being able to get off the couch)

I did pharmacogenomic testing mostly out of curiosity/help with med selection (yes, I know opinions on those tests are mixed). Honestly, the only thing that works well for me is Klonopin. However I’m trying to taper off and find something else as right now I take 5 mg am and 2.5 mgs pm.

I’m curious whether people with similar “anxious + stuck/frozen but helped by tiny stimulants” experiences ended up doing better with:

*Vyvanse/lisdexamfetamine
* guanfacine
* combo therapy
* something else entirely

***big issue for me is not trying anything that people report repeatedly causes weight gain (even if the studies claim they don’t cause weight gain). I’ve been struggling for years with menapause and finally lost weight with Retatrutide but I still have some to go.

Especially interested in hearing from people with histamine/MCAS/anxiety sensitivity too because my nervous system feels very reactive.

Not looking for medical advice — just personal experiences.

I have a lot of rumination/anxiety/OCD-type thinking and periods where I feel mentally “stuck” or frozen when trying to initiate tasks — even things I WANT to do. Almost like my brain hits a wall before action. Ima lap late diagnosis of Level 1 Autism. Suspect histamine issues.

Oddly, tiny doses of Adderall IR (5 mg, sometimes even 2.5 mg) help a LOT mentally:
brain feels more open/flexible
less rumination
easier to think of possibilities
easier to start things

BUT physically it can also make me feel:
* overstimulated at times (especially as if something negative happens and right now I have a family member with some ongoing health issues that are unpredictable)
*more aware of heart rate/breathing - I finally came here to post because the low dose I’m
using isn’t lasting and I tried to take 1 pill twice today (so 5 mgs and 5 mgs as the frost started to fade) and I felt like horrible once the initial good effect of the 2nd dose started to shift into heart racing, almost a dizzy or off-balance feeling, very anxious as a result of my physical discomfort (I have medical anxiety)
more anxious if life stress happens

* So it’s like it helps my brain tog I ally focus (at a time when I’m struggling to focus alot) m, as well as to override OCD-type rumination fear thoughts, but can overwhelm my nervous system.

*Crashing hard despite doing all the “things” (water, protein, etc)

I do have slow comp met/met for those who are familiar (if not it’s slower processing of medications through the liver and can cause problems with various medications building up and sort of backfiring).

I also:

tend toward anxiety/depression
am in menopause/perimenopause
exercise/eat well
am working on hormone optimization
seem very sensitive to medications in general

Have tried over the years several SSRIs, Wellbutrin, Buspar, Vraylar (haven’t done well on these - esp with weight concerns and/or increase in anxiety and/or not being able to get off the couch)

I did pharmacogenomic testing mostly out of curiosity/help with med selection (yes, I know opinions on those tests are mixed). Honestly, the only thing that works well for me is Klonopin. However I’m trying to taper off and find something else as right now I take 5 mg am and 2.5 mgs pm.

I’m curious whether people with similar “anxious + stuck/frozen but helped by tiny stimulants” experiences ended up doing better with:

*Vyvanse/lisdexamfetamine
* guanfacine
* combo therapy
* something else entirely

***big issue for me is not trying anything that people report repeatedly causes weight gain (even if the studies claim they don’t cause weight gain). I’ve been struggling for years with menapause and finally lost weight with Retatrutide but I still have some to go.

Especially interested in hearing from people with histamine/MCAS/anxiety sensitivity too because my nervous system feels very reactive.

Not looking for medical advice — just personal experiences.

I had applied for IDR-it sees from looking at my history (not I can’t remember if I saw it in Mohela or the Federal site) that they approved but yet didn’t exactly activate it, for lack of a better way to put it. I graduated in 2003 and made continuous payments until COVID and have been on admin forbearance since. I think I made one payment at some pin decent mat time because I was told I needed to and then it flipped back. Anyone else in a similar situation and waiting hear?

I’ve tried calling Mohela-can’t get anyone in the phone. I

I’m hesitating on paying a specialist as I pay fully out of pocket. I don’t have regular insurance (I have a share plan). I know nobody can diagnosis etc but just wondering if anyone else had similar issues and found that it MCAS?
Then I’ll have more of an idea if it’s worth it to pay for a consultation.

**would greatly appreciate referrals to good online providers.

**wondering if anyone has had no issues with weight gain or anxiety/depression with specific medications? Or which ones to avoid.

Symptoms

* Biggest issue is high anxiety, OCD rumination, thinking, panic.

* Itching on skin with some environmental allergies, contact dermatitis (like bed sheets esp right after doing laundry-have to share in building with people who do use not “clean” products but I put vinegar and enzymes in addition to my detergent to try to help).

* Allergy meds other than Claritin cause anxiety and depression. Even the nasal sprays. I take Pepcid if needed - usually 4-5 days per week.

* I don’t know how much people take this into consideration, but genetic test showed: MTHFR C/T + COMT Met/Met

COMT: Met/Met

MTHFR Genotype and Phenotype
Moderately Reduced Activity
This individual is heterozygous for the C677T polymorphism in the MTHFR gene (C/T genotype) and has one copy of the variant allele (T).

* Some foods cause physical symptoms of panic like heart palpitations. And bloating. I apologize but right now my allergies/sick are so bad I am unable to recall most of those foods. Anything processed sugar obviously or high carb foods. Canned tuna/sardines.

* Can’t take many supplements other people think are wonderful like creatine and collagen supplements. They make me anxious, sometimes heart will race. I do take NAC twice a day, but can’t tolerate Quercitin. And it doesn’t do anything from me anyway. Prone to getting sick if I even go to the person / hair salon etc. I pick things up so easily. Bruise easily but Ferratin and iron levels are normal.

* Neck pain and migraines but I have to say that have gotten better with HRT and KLOW peptides.

* Klonipin (can’t tolerate SSRIs/SNRIs / or don’t work) for a few years on and off but that will also stop vertigo that comes from weather changes / environmental. I know they are MCAS stabilizers. Also diagnosed as an adult with ADHD and Autism Level 1.

Summary-trying to get some insight if this could be just the dose or if this isn’t working for me..or would I benefit from adding in something else. Should mention tried one dose of MOT C and I felt like it was too much for my system-I have anxiety and right now “extra” with lots of stress. I’m also doing KLOW for appx 2 months.

I’ve tirated up rather slowly (started Feb 20 at .5 two times per week) since I was very nauseous initially and tend to be sensitive to all meds, supplements, etc. Finally realized I needed more fiber for the nausea.

I have not lost any weight in two weeks on 4mgs per week of Reta, which I increased about two weeks ago up from 2 mgs (which I’ve been on for appx a month) and I’ve continued to split between two doses per week.

I had lost 17 lbs since Feb 20 as of two weeks and a few days ago and no more weight loss since. I’m seeing a lot of people at 2 mgs / 2.5 mgs saying they’ve lost at least ten lbs more than me after taking for about the same amount of time. I’m very mindful of getting enough protein, no processed sugar, balanced diet with just enough carbs. I do resistance training three times per week (just enough cardio for being 52 yr old female to not over stress my body and cause the opposite effect) and walking dogs multiple
Times a day.

But I’m concerned I’m stalling out on Reta. Just raised Reta .5 more last night and will do that again for my next dose - so total 5 mgs per week. If anyone’s wondering why I’m splitting it’s just because I’m being cautious about the impact of upping doses too much for my system. Already not feeling fantastic with hormonal issues as well as high stress right now (which I know could also be not helping due to cortisol).

*I also found out my Free T3 thyroid was just over the cusp into normal from being too low two and half weeks ago. So I also lowered my HRT dose to half of the estradial and progesterone and not sure but assume it could maybe have been interfering with thyroid and weight loss. Too soon to retest to see if it’s any better.

I’ve been using Oestra since Oct but they only have a compounded cream (vaginal), that only comes combined and only in two different doses-combo of estradial and progesterone.

My estradial went up to 1040 and the first doctor I spoke with at Oestra told me it was “fine” even though I was feeling incredibly agitated and my thyroid Free T3 is right on the cusp of the too low range. I spoke with someone else there and they advised I could cut the dose in half. But I don’t like that I can’t get my estradial and progesterone separate.

However, I’ve looked at many other providers (and I pay out of pocket and get no reimbursement), but can only find ones that have the progesterone in another form (pill, etc). Concerned that those other forms aren’t as good so just wondering if others have had good results with any other forms like pill form, etc. and you also like the company you’re using? I’d also like to find one that addresses the thyroid issue, potentially.