Goin' to the doctor tomorrow woooo

@PhantasmOfEcstasy Yes, most definitely! I'm so exhausted with it at this point, been battling my health for 15 years and I just don't have the energy for this anymore. I've been making a lot of progress with working out and such lately and this has thrown a major wrench in it.

Always something else to deal with I guess. :)

@thepeculiarpanda I felt that in my bones. I got health issues too. Dizziness/lightheadedness and vertigo are my constant companions.

Hopefully, it's something minor.

If you're having panic attacks again, be sure to drop nicotine (if you smoke) and caffeine. They are stimulants that amplify anxiety and panic.

If you're dizzy and lack energy, the first things that I would suggest is a CBC to check cell levels, hemoglobin and iron/iron saturation as well as check your vitamin B12. Anemia can cause a lot of that. If you're B12 deficient, it can mess up your iron absorption. Your body needs iron to make hemoglobin and your red blood cells need hemoglobin to properly carry oxygen.

Sadly, dizziness is an indicator of so many things. But blood labs are a great place to start!

@PhantasmOfEcstasy They are such miserable companions!! I'm sorry you have to deal with them as well. :(

I hope it's something minor but it's been something serious so many times now that I just get nervous haha. Sarcoidosis is such a weird condition.

I've been taking a B vitamin complex every day and trying to eat as much iron-rich food as I can but I'm definitely gonna get it checked out! Gonna try to get as much checked as I can just to make sure everything's normal.

My heart rate has been a bit more elevated than usual (running around 95-100 BPM) so I may end up on another beta blocker on top of my usual blood pressure meds. 🤔

@thepeculiarpanda When you say heart rate, I'm guessing that you're referring to your resting heart rate as 95-100bpm? Which, honestly, isn't too far off of normal. Some healthcare workers have actually suggested that a normal resting heart rate can be as high as 103 bpm. Most doctors will tell you a good resting heart rate will be between 65-90bpm

Just be sure to get everything you can looked at. And it wouldn't hurt to make sure your potassium and magnesium levels are good. You need both of those for heart health-- and you won't absorb one without a high enough level the other.

@PhantasmOfEcstasy Yup, that's resting. :) It has been much, much higher in the past, and it likes to go up and down. Comes from sarcoidosis in my kidneys I think, there's nothing wrong with my heart. 🤔

I take magnesium every day but I'm wondering if it's my potassium. There are just so many things to have to worry about and I don't even feel like a human being anymore, just a collection of faulty organs that constantly have to be wrangled haha.

@thepeculiarpanda If it's the potassium, you'll probably notice a lot more muscle cramps too. Charly horses, especially.

You did mention panic attacks. Panic disorder is one of my six mental illnesses and I was told by my psychiatrist that panic attacks will spike your heart rate as will anxiety. You'll notice a lot of panic attack symptoms mirror heart attack symptoms. Which is why so many people having panic attacks fear they're dying. I've had panic attacks and even anxiety spikes that have caused lightheadedness, black spots in my vision, distant hearing, cold sweats and pins/needles numbness in the face, arms and hands. Literally verge of fainting or fainting while it causes my heart rate to spike. If you're having more panic attacks, it could be a small part of your dizziness? At least a small part?


The best thing to do is try to relax and keep calm until you see a doctor and know more. No need to stress yourself out right now. Get your labs done and go from there. Blood alone tells you a great deal of information and a lot of doctors will order pee tests as well as blood when they order labs. From there, they can either work the problem out or order more testing-- MRIs, CT scans, Ultrasounds of whatever organs, EKG, EEG, EMG, whatever you might need. The doctor (and maybe a specialist if you need it) will be able to work it all out for you. So just try to take it easy.

I can relate to the feel of faulty organs. No one ever told me that I'd be 33 going on 69420666 this year haha.

@PhantasmOfEcstasy Unfortunately, my legs constantly cramp anyway from spinal cord damage so it's kind of hard to tell when something is different on that front. 😅 I actually have another appointment next week to do a follow-up on a spinal MRI I had and to see whether stem cell would be effective treatment or not. Fingers crossed!

I think the anxiety is probably to blame and I don't really know what to do about it. None of the meds that are supposed to help with it and not much of anything else seems to help either. Just doing my best to work on my deep breathing and posture and such and also trying not to focus on the news much right now since none of it is good. Having to rely on the internet as your window to the world is so very not ideal. 😮‍💨

I'm 36 going on 37 and have sarcoidosis in all of my major organs except for my heart. It's supposedly in remission but after 15 years of constant pain and cramping, I just feel like I'm falling apart haha. We need robot bodies! 😤

@thepeculiarpanda I would think that Charly horses would feel different. There are different levels and types of muscle cramps. But then again, everyone reacts to pain differently and it would also depend on your pain tolerance. What kind of spinal cord damage are we talking?

I had an MRI once that a neurosurgeon ordered. He wanted to see what was causing me to have reoccurring sciatica. He found I have degenerative disc disease in my spine as well as levoscoliosis and that arthritis in my spine spread to the right sacroiliac joint. It causes reoccurring sacroilitis, which is when the joint puffs up and presses on the nerves around it, including the sciatic nerve. Causes me to be unable to walk for a few weeks out of the month when it flares up because of pain and leg weakness. It's crazy what spine problems can do.

I read your comment about your inner ear. That could be causing your dizziness too. Inner ear issues affect equilibrium. You might need to see an ENT (Ears, Nose and Throat) specialist. Since your ears, nose and throat are all connected. That's why I laugh when people say to throw your head back if you have a nose bleed. You never want to do that. Throw it forward. If you tip your head back, you can swallow and choke on your blood. It's all connected.

If you have Sarcoidosis, which are clusters of inflammatory cells on various parts of the body, have you discussed with your doctor about steroid treatments and immunosuppresive drug therapy?

For the anxiety, I know benzodiazepines help me. I take a pretty decent dose of Klonopin. It doesn't hit as hard as Xanax all at once, but it lasts longer and doesn't work like shit as fast as Xanax. I also take a high dose Gabapentin (which is an anticonvulsant used to also treat anxiety and nerve pain). All my meds/psych meds are high dose lol. Meds alone can only do so much. Therapy can help with anxiety as well as the 333 exercise (Inhale 3 seconds, hold 3, exhale 3) (I do 575, myself). You can also try the whole... Submerging your face in cold water to induce the dive response and also stimulating your senses. When you stimulate your senses with comforting tastes (favourite candy, for example), sights (like a favourite scene or magazine), scents and so on-- it makes it easier to ground yourself. "5 things I see. 4 I smell. 3 I taste." so on and so forth. I learned a lot of Calming techniques in DBT because it was about riding out the urges to self harm and also how to deal with anxiety. I have a few worksheets that have all sorts of techniques I can DM you pictures of to try if you'd like. They help me a lot of time. Not all times, because a fair amount of my panic attacks happen without a known trigger, but a fair amount.


I'd also ask your doctor about conditions you could have that are mimicking/mirroring Sarcoidosis. Or perhaps a comorbidity.

@PhantasmOfEcstasy I have thinning in the thoracic area of my spinal cord thanks to neurosarcoidosis. It has made my legs tone themselves constantly since 2010 which results in cramps and spasms. Not charlie horses though, I dealt with those back when my hip was broken for seven months in 2011; after the replacement, they had to physically stretch my leg back out since it had retracted so much and I had the worst charlie horses for a few months afterward. They would wake me up out of a deep sleep and I'd have to hobble up and down the hallway on my walker until they finally quieted down enough.

Owww that sounds so painful. 😵‍💫 I wish medicine had come further when it comes to helping spinal cord and brain problems than it has, this stuff makes existing so difficult. Just means we're tough for surviving it though. :3

My sarcoid is actually in remission, or it was as of a few months ago. Gonna have them check my markers for that as well to make sure though. Steroids are the reason I broke my hip in the first place so I'm a little wary of them and immunosuppression just makes me feel like garbage; I was on Humira for a few years that I came off of right before Covid-19 happened. Lucky timing I guess (even though I still got alpha variant and had it for four months 😅)

I have Klonopin and Buspar but they both just added to my anxiety rather than helping it. 🤔 So many medications don't do what they're supposed to when it comes to my body and it's so frustrating haha.

I'm much better at grounding now than I used to be :3 Much better at walking myself back from the panic attack ledge although they're still completely exhausting and draining when they happen. I haven't had to call the ambulance for one in a couple of years though so I'd definitely call that progress! 😅

@thepeculiarpanda Well, it's natural for you to feel like garbage at first with immunosuppressants because they literally suppress your immune system. The very thing that attacks illnesses that enter the body and such. I can understand being wary of meds because of bad experiences, but sometimes the right combo of those meds have benefits that outweigh the risks, ya know?

I am sorry you have to deal with all of this. It's garbage you don't need.

Klonopin is good. Buspar? Ew. I will NEVER go back on Buspar bars. They not only fucked with my cardiac health, but they didn't do boo for my anxiety. Have you ever had a genesite test done? Might be worth looking into. My PCP ordered one on me to try to help my psychiatrist. Genesite looks at how your body métabolizes drugs and tells you what drugs have a moderate gene interaction that makes them not work as well. They swab your cheek and send it off to the lab. I found out that I had a double short allele of a specific gene (double meaning I get it from both parents) that caused medication resistance to a lot of psychiatric medications. Which is why the meds I'm on need to be max dose they can treat you with in 24 hours and some meds didn't work at all. It shows what drugs are suggested as well.

They can look into whatever classes of medications the ordering provider wants. My PCP looked mainly into antidepressants, anxiety meds and antipsychotics.

As far as psych meds go, I'm on:
200mg Zoloft (SSRI antidepressant)
300mg Welbutrin (Antidepressant)
2400mg Gabapentin (For anxiety)
3mg Klonopin (Anxiety)
200mg Lamictal (Mood stabilizer)
4mg Rexulti (Antipsychotic)

I take these each night and they seem to be the best combo we've tried so far. She's questioning dropping Rexulti and trying one called Caplyta. I've been on so many second Gen antipsychotics and even a few first gen ones (that go back to the 50s) and we still can't seem to control my psychotic symptoms such as hallucinations and delusions and such.

Anyways. We found that some of the meds I was on have a significant gene interaction that impairs the way they metabolize. So we've had to alter and change out meds along the way.

I'd look into it. Maybe for anxiety meds and meds more geared towards treating your Sarcoidosis. See what suggestions it offers.