u/pandabears3

This is a l*thal combo? 😳 Just got prescribed this by electrophysiologist assistant.

Is anybody on both ?

Hi everyone! I have Hyperadrenergic POTS.

My blood pressure is mostly low unless I have flares or I get a panic attack (which I get a lot lately) my BP spikes but not too high. Usually up to 120s-130s over 70/80. && Baseline is 80/50 90/60. Therefore beta blockers are a no for me.

I see my electrophysiologist today for my 3 months follow up regarding the dysautonomia which he thought I would “outgrow”. And I am going to demand ivabradine.

If you are also taking this do you mind telling me how long until it starts working?

I am terrified of meds bc I also suspect MCAS and meds never work for me. They usually always cause me bad side effects that outweigh the good. But I just can’t keep living like this.

Every month I get severe panic attacks!!! I also have been dx with Dysautonomia and possible MCAS and PMDD/PME. And I am on zero meds.

I finally tried the Allegra and Pepcid. Pepcid was not a go for me as it caused me horrible migraines! And I am already a migraine sufferer so that was a no.

But the ALLEGRA 60mg once in the morning has really helped me!!! First thing that has actually helped me and gave me relief. I’m on day 1 of my period and I began taking it 3 days before where I would feel severe sadness and lots of crying and panic and omg it’s truly working! I will continue talking it until my period is over or at least 3 days in bc usually that’s when I have severe symptoms and I will come back to update. 🙏💕

I’ve tried round lab chemical one which I loved but still burned my eyes and caused me break outs if used under make up.

Days before my period my body seems to be extra hot!!! I feel like a low grade fever, a lot of flushing. Like I’m burning inside . Severe panic and anxiety. Any little thing spikes my HR like something simple like burping spikes it to 130. Any little thing makes me feel extremely overwhelmed. I’m overstimulated. I feel shaky and super tired. A lot of GI symptoms. &&& air hunger. (The anxiety and panic are the worse symptoms bc the burning body sensation and GI are hard to deal with when I’m stuck in panic and they trigger me severe panic attacks.)

Can it be more MCAS, Dysautonomia flaring, or more PMDD/PME. Or all 3.

Was at the ER and they highly suspected PMDD/PME.

I’ve already been dx with Dysautonomia.

And currently waiting for my referral to the Allergist bc doctor also suspects histamine issues.

To moderator I am not looking for a diagnosis just a little push in the right direction so I can speak to my doctor today.

Hi everyone ! Anyone that had this vascular compression can you please tell me how they diagnosed you and what were your symptoms .

I finally got referred to a vascular surgeon but not sure if that is who helps with this? I have blood in urine culture for years. UTI symptoms that is never a UTI like flank pain, pelvic pain, urinary urgency, pain during intercourse, sometimes protein in urine. This heavy fullness in my lower pelvis and legs. Among other things.

Did anybody else experience this? Usually I deal with GI issues but after starting the Thorne Iron complex with vitamin C and B omg. My GI issues like trapped air and acid reflux has exacted especially mornings as soon as I wake up.

Anybody else ? Any other iron supplements you guys recommend ? My ferritin is a 7 so I really really need to keep taking iron and I also have dysautonomia and so I feel like death. Thank you.

Hello I am 34 F 108 pounds. I have been suffering with GI symptoms for at least 6 years now. BUT it’s getting so bad. I’m on zero meds.

I have chronic burping ALL DAY AND NIGHT LONG. But especially in the morning I wake up and I feel a lot of trapped air in my chest. And have to burp sooooo much. I feel air hunger like I can’t breathe or like I am not getting oxygen in. As well as what it feels like esophagus spams that scare me so bad. And this fullness pressure feeling when I stand at the center bottom of my sternum. When I sit usually the fullness pressure feeling goes away especially after burping. But it’s so severe that it’s spiking my hear rate up to 150. Tums does seem to help somewhat. I also always pass stool first thing in the morning. But that doesn’t seem to relieve my symptoms.

Also forgot to mention I am on a high protein, fiber and very portioned complex carbs diet. I do not eat desserts, soda, bread, pasta, oats. Etc.

Hello does anyone who has reactive hypoglycemia successfully fasted on liquid diets for medical procedures like endoscopy etc. and been okay?

I have dysautonomia / Hyper POTS, Panic Disorder, and reactive hypoglycemia non diabetic and if I do not eat high protein meals then I feel terrible like hospital terrible and flares my chronic condition (POTS).

I’ve been told I need an endoscopy and a doctor wants to do mapping on me to check for endometriosis which both require fasting and liquid diet which I believe my body is just incapable of. ❤️‍🩹

Hi everyone. What were your endo symptoms?

I’m 34F I deal with constant pelvic pain. Pain that even goes to my legs and they feel heavy. Papsmeres hurt my cervix so bad. Intercourse is INTOLERABLE. I was having blood on my stool like the day before my period even started. A lot of UTI symptoms with negative cultures. Dx with IC. When I walk too long my pelvis and lower back hurt. A lot of GI issues. My whole body is always in pain. When they have done transvaginal ultrasounds OMG severe severe pain like in the cervix area and ovaries but they find nothing!

Hi everyone ! So I feel like I have had dysautonomia for at least 10 years.

But it wasn’t until this year that it got so severe after catching influenza A and suffering severe stress with a new job and being a single mom that now showering causes me flares and my HR spikes from 130-160s. I was bed bound for at least 3 months straight. I am doing somewhat better but the showers still trigger me so bad.

Does anybody not have any issues when showering ?

After 10 years of trying the natural route teas, therapy etc. I just can’t cope anymore.

What medication helped you?

So I am not on any meds yet. I was prescribed Allegra and Pepcid at the ER for. possible histamine intolerance they suspected. But other than that on zero meds.He was hesitant to put me on ivabradine and wanted me to try lexapro but idk.

I see him next month so please tell me your good or bad experiences on lexapro or any other anxiety med you are on. How long until you felt relief. And are you on other meds?

I beg you guys plz if you have a good primary doctor in the Los Angeles area that is caring,actually listens and helps you with dysautonomia. That actually wants to help you rule out things and get to the root cause. That doesn’t brush you off. That actually happily sends you out to specialists without you having to beg and wait until you feel worse to get sent out. PLEASE let me know. I am EXHAUSTED. Mentally and physically. 🥺 I just need help. I need good doctors in my team of care. Thank you.

Please tell me I’m not the only one with crippling GI symptoms and the chest soreness pain idk how to describe it.

I wake up everyday miserable because it’s when I feel it the worst!!!!!! I dream of waking up rested but my chest pain every morning alongside the HR spikes causes me so much distress. It feels like the chest pain and GI stuff like horrible acid reflux flare my POTS and cause me the HR SPIKES. Crying while writing this because some days I just wanna throw up the towel but I’m a mom in my early 30s of a beautiful kinder boy. The feeling of doom every single morning is really taking a toll. But I can’t imagine my son without me and of course my family. And no I am not suicidal. I have anxiety bc I fear death. I fear sickness. I fear landing in the hospital like I have in the past and nobody help me other than just give me IV and just look at me like I’m an alien. While I was in severe panic, pain, and suffering. The chest pain/ soreness started since OCTOBER 2025 and won’t budge. And the HR spikes I’ve always had for 10 years but it wasn’t until January 2026 I caught influenza A and it wrecked me! Haven’t been able to get out of this “flare”. Lost my job. Lost my life. I feel like I’m frozen in time while everyone else keeps moving forward. And I feel and I am the biggest burden to my family. Useless! I was in my masters program and had to also let that go. Rent and purchasing homes rn is ridiculous! Me and my partner were a power couple and now all that is gone. We were about to purchase a home together and now we can’t bc of me. My poor son asks me why I’m always sick and can’t play with him!

I am on zero meds for anything bc I fear the side effects. Bc I’ve always been extremely sensitive to meds. To everything! Certain foods. Even mosquito bites. Like my body is just so vulnerable and acts so erratic I don’t trust it.

Not that doctors have offered me meds yet tho……..but I don’t even think I could get myself to try them. I also do see a therapist but I see that as useless as I’ve been in therapy before and. I feel like I have acquired all the tools they usually teach you and so this just redundant and a waste of time for me.

If you got this far thank you. I am going to do a new post asking about primary doctors in the Los Angeles area that are familiar with dysautonomia. Bc I really really need support.

Anybody else with Dysautonomia/ MCAS deal with this?

I saw an article that said tretinoin can cause histamine release

Is this why would get heart rate spikes or like adrenaline surges and feeling unwell and hot after using it…..

Anybody else sensitive to tretinoin or beauty products like vitamin c creams etc?

Which one did you prefer and why?

Hi everyone can you please tell me your early signs of gastroparesis if you have this! PLEASE! 🙏 how did you notice something was wrong and how did you get diagnosed.

Anyone else on here just dealing with POTS “naturally” or with no meds?

Or even if you were once on meds but stopped because they made it worse?