Ashleigh

Hi @kel15! I am prone to costochondritis (mine also started after gallbladder removal which is weird - I never associated the two) and some of what you’re describing is familiar to me - crushing chest pain, feeling like you can’t draw in a breath, laying down making the pain worse, etc. The first time it happened to me I thought for sure I was having a heart attack and went to the ER, but every test came back completely fine. I’ve never heard of it being triggered by food or smells, it’s usually triggered by movement, but maybe those things cause you to tense certain muscles that trigger it. It’s an inflammatory condition, so it does make sense that it would resolve while taking anti-inflammatory medication. If it is costo, I highly recommend looking into Steve August’s videos and his Backpod device. They have helped me tremendously although using the backpod was excruciating for the first few weeks. Anti-inflammatories and ice also help when I’m having a bad flare.

The dysautonomia/MVP center in Birmingham, AL might be an option for you if you’re in north Florida. I don’t know what their current wait time is for an appointment, but I’ve had wonderful care there.

This is very interesting. I’ve never had a doctor fully confirm my suspicions about my dysautonomia onset, but my initial symptoms occurred about a week after my first flu shot in 2010. I didn’t make the connection at the time, and my symptoms gradually went away that time, but the following year I had another flu shot that triggered the symptoms to flare up again and much worse. I no longer get a flu shot due to it triggering a flare up of symptoms for me. I’d rather practice good hygiene and take the risk of catching the flu. I’ve gotten the flu once in 9 years of not receiving the shot, and while it did make my symptoms flare up, to me it’s better than dealing with the shot symptoms annually.

Your symptoms sound pretty similar to mine, and I’ve been told I have IST with mild orthostatic intolerance. From what I’ve been told, a consistently high resting heart rate (95 or higher) is usually a key difference between IST and POTS. With IST, my heart rate also elevates substantially with minimal activity, including standing. Of course, there’s a lot of crossover between IST and POTS symptoms, so I would absolutely recommend seeing a doctor that specializes in dysautonomia - it has really helped me!

I keep asking, but I still haven’t heard of any pharmacies near me that have it. I hope that means it’ll be back soon though! I know all insurance companies are different, but I’ve filled 3 beta-blocker prescriptions in the last month with no issues. If you know atenolol works for you and it’s available, I’d definitely try to fill it!

After trying a few different doses of the metoprolol, my doctor switched me to nadolol. I’ve only been on it a few days, but so far I feel much better than I did with the metoprolol. It’s crazy how different beta blockers affect different people.

I know I’m prone to strange changes in body temperature, and often find that my temperature is very low at times when I feel very hot and dizzy, so I think body temperature regulation can definitely be a problem. I’m not doubting your temperature results (POTS/dysautonomia can make our bodies do weird things), but those temperatures really are very low, so I understand your concern. You mentioned that you drank a glass of cold water before taking your temperature – did you take it orally? The water could have temporarily changed your mouth temperature, so your thermometer reading may not have been an accurate measurement of your true body temp. If there was a long gap between drinking the water and taking your temperature, or you didn’t use an oral thermometer then nevermind, you just had seriously low temps!

Hi everyone! I'm a newbie here, but I've had IST for 7 years now. I've been taking atenolol for the last few years and it has worked really well for me. Unfortunately, I've been unable to find a pharmacy with atenolol to refill my prescription thanks to the current shortage. I was prescribed metoprolol XL instead, and I have felt awful since switching. Initially, I had frequent palpitations and high HR, dizziness, and headaches. After a few days on the original dose, my doctor increased my dose, and since then my heart-related symptoms have mostly improved, but I have had a near constant headache for days. Atenolol actually had the side benefit of improving my migraines, but metoprolol seems to be making them worse. Has anyone experienced anything similar switching from atenolol to metoprolol, or between any other beta-blockers? Is this just an adjustment period? I don't know whether to contact my doctor again about increasing the dose or trying a different beta-blocker, or if I should give it more time.