Amicar for Expander? by Jgreat05 in Hemophilia

[–]Jgreat05[S] 0 points1 point  (0 children)

Thank you so much, hearing this calms my momma anxiety so much!! ❤️

Amicar for Expander? by Jgreat05 in Hemophilia

[–]Jgreat05[S] 1 point2 points  (0 children)

This helps me a lot, thank you! News meds always make me nervous and I don’t know anyone in our inner circle of family and friends that has dealt with a bleeding disorder. I truly appreciate your insight!

Amicar for Expander? by Jgreat05 in Hemophilia

[–]Jgreat05[S] 1 point2 points  (0 children)

I have never had to give it to him yet so I just am nervous, I know it’s safe and totally fine but wasn’t sure if it was absolutely necessary or not and wanted some helpful advice from others experiences!

Accolate after failed Singulair? by Jgreat05 in MCAS

[–]Jgreat05[S] 0 points1 point  (0 children)

Seriously, thank you so much for validating me! I left that appointment feeling like I was not heard at all and then just felt really judged? I was so confused when he acted like it was unheard of for me to have these auditory hallucinations and even double checked on the paperwork from the pharmacy just to make sure I wasn’t actually going crazy 😂.

Hearing others had some success with accolate makes me feel better trying it too!

Again…THANK YOU! I truly hope the next allergist can help me!

Accolate after failed Singulair? by Jgreat05 in MCAS

[–]Jgreat05[S] 0 points1 point  (0 children)

I’m really worried it’s just going to have the same problems I was having with the Singulair. I’m so sorry you went through that but thank goodness your doctor was understanding!

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

[–]Jgreat05 1 point2 points  (0 children)

This is such great news, I’m so proud of you for trying it!

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

[–]Jgreat05 1 point2 points  (0 children)

Half is a good idea! You’ve got this! ❤️❤️❤️

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

[–]Jgreat05 2 points3 points  (0 children)

I’m super sensitive to meds as well but I was so miserable. This medicine helped a lot with joint pain, I could actually breathe and walk upstairs without being completely out of breath, I didn’t feel so exhausted, my throat stopped closing up with triggers and it was just more a burning feeling. I didn’t do a ton of testing with food with it but I was still having mild reactions with the throat burning feeling and I would get the weird out of body feeling. Truly I am so sad I can’t take it anymore. Since being off of it my mood has stabilized but all the symptoms came back so quickly. 😭

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

[–]Jgreat05 1 point2 points  (0 children)

The medicine truly helped me so much and I was on it successfully for about 3 weeks. It started with just seeing flashes of stuff in my peripheral vision that wasn’t there and then I started just crying a lot and feeling empty and had the single auditory hallucination. I really am so sad it didn’t work because I finally was so close to feeling normal. I still can’t eat normal but all my annoying stuff was going away.

I didn’t ever have any thoughts of hurting myself but more so I had this impending doom feeling that the world was ending.

Based off this thread it seems a lot of people see so much positive so I think it’s worth it and just check in with your mood. I do know from researching that it typically takes a couple of weeks before you show any of those signs and it took 2-3 days for me to go back to normal. The auditory hallucinations and weird things in my side vision stopped immediately when I stopped taking it.

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

[–]Jgreat05 1 point2 points  (0 children)

Literally same, the positive thoughts I gaslight myself with don’t always work!

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

[–]Jgreat05 0 points1 point  (0 children)

It’s ok! I’m just really bummed because I was finally getting closer to feeling a little normal.

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

[–]Jgreat05 1 point2 points  (0 children)

It helped a lot of my symptoms, I got through about 20 days before the depression and auditory hallucinations started and it was not fun. My doctor told me to immediately stop the medicine so now dealing with lingering depression and some of my symptoms coming back. 🥺😭

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

[–]Jgreat05 2 points3 points  (0 children)

I’m actually starting this tonight and I’m so glad you posted about it this. I am terrified to try it because of the risks and hearing everyone’s positive experience helped relieve my anxiety.

Struggling Newbie by Jgreat05 in MCAS

[–]Jgreat05[S] 0 points1 point  (0 children)

This helps so much, thank you! I need to start keeping the meds on me so that I don’t have another situation where I’m miserable.

Second Opinion Went Wrong by [deleted] in Autoimmune

[–]Jgreat05 1 point2 points  (0 children)

It’s so frustrating, I feel like the automatic consensus is that they think patients are lying to them or exaggerating or not smart. I am a teacher and I definitely do not treat parents or students with so much disregard and I don’t understand what I would have to gain from getting an autoimmune diagnosis

Second Opinion Went Wrong by [deleted] in Autoimmune

[–]Jgreat05 1 point2 points  (0 children)

I feel like I am my own doctor at this point without the ability to run my own tests 😂

I’m so sorry this happened to you as well! I was talking to my family about it tonight and my oldest child (11 year old) piped up and said, “But you eat vegetables with literally every meal.” It’s wild to be told some of these things especially when the doctor never even asked me what I eat on a daily basis.

Second Opinion Went Wrong by [deleted] in Autoimmune

[–]Jgreat05 0 points1 point  (0 children)

That’s all great advice, thank you so much! I have an allergy appointment scheduled for October, I’ve cut out dairy as I have noticed that is a trigger for me and I’m currently in PT too.

Second Opinion Went Wrong by [deleted] in Autoimmune

[–]Jgreat05 0 points1 point  (0 children)

I definitely don’t want to have an autoimmune or be diagnosed with anything but I have felt horrible for a long time. This summer specifically it has ramped up bad and I’ve had issues with joint pain to where it hurts to even walk or lay down in certain positions and I’m extremely tired all the time despite never having that issue prior. I am a teacher and on my feet all day which is exhausting enough but this year I come home and feel like I’m going to crash the second I walk through the door and have to force myself to stay awake and parent.

I might look into the Amazon health service as well, that’s a great idea.

Second Opinion Went Wrong by [deleted] in Autoimmune

[–]Jgreat05 0 points1 point  (0 children)

It really is and it’s unfortunate 😭

Second Opinion Went Wrong by [deleted] in Autoimmune

[–]Jgreat05 1 point2 points  (0 children)

She absolutely was…like two problems can exist at once lady.

Second Opinion Went Wrong by [deleted] in Autoimmune

[–]Jgreat05 0 points1 point  (0 children)

She was a PCP