flowntheloop

I've read many stories here about VCD and laryngeal spasms, but does anyone else here have issues with slurring and jumbling words at the start or even during POTS flareups? I'm autistic and struggle with selective/situational mutism as is, but I've made note that I can't seem to put sentences and words together at the very start of my really bad flares--usually around the same time that my allodynia has begun (another one of my precursors to a bad flare). I sound like a drunk person, and it seems like my tongue doesn't want to cooperate. I'd also like to mention that I lose grip and muscle strength during these flares. I'm wondering if I need to go back to a neurologist eventually. I went back in 2014 or so, and nothing (except a subarachnoid parietal cyst) showed up on my brainscan then.

I am so very sorry that you are going through this. I do not have any experience with this, but I can relate in not being heard by medical health professionals. Keep on seeking those answers and get the help you deserve! ❤️

I get them at random times throughout the day. I have not yet figured out a trigger, so please let me know if you find yours! I didn't start getting brain zaps until I weaned off of SSRIs in 2013 (took me an entire year due to the side effects). I didn't not feel back to my self until 2015. It was pure h***! Can you induce your zaps by keeping your head still and looking as far as you can to the corner of the room? It is freaky!

I'm pretty sensitive to herbs, so I'd be nervous to try those. I think I may have had passion flower with no effect in the past, however. I cannot take Benadryl (unless I'm dying) as it causes severe GI symptoms (I have motility issues). I think I'm more concerned about what follows my allodynia episodes than the actual allodynia? I use cool (not fully frozen) ice packs on really bad spots when it flares, but nothing else really helps that part. Do you have any symptoms following your allodynia flares?

Hello there, and I'm so sorry your daughter is struggling. I am autistic (with ADHD symptoms), and I had a very similar reaction to Wellbutrin (when I was in my mid-twenties); I was bouncing off the walls, not sleeping, and very anxious. I now take lorazepam (aka Ativan) for sleep and panic/tachycardia attacks (have done so off and on for nearly a decade now, and it is an absolute lifesaver). I take a very low dose (unless I have really bad attacks), and I have never had an issue with dependence or withdrawals. I even voluntarily stopped filling my prescriptions for several years when I had a lull in symptoms. Maybe I'm different from other people, but I have never felt high with this medication. There are some weeks/months where I don't even take it. In terms of potential for abuse, it is a Schedule IV drug here in the US, meaning the likelihood of dependence is way less than medications like ritalin (schedule II). It is also a long acting benzodiazepene--and in my case way more effective than short-acting benzodiazepenes like xanax (which actually worsen my anxiety/sleep symptoms). Just remember that all bodies are different, and some taboo medications may prove useful for SOME people. Just something worth considering. I also take a high quality (broad-spectrum CBD oil) and practice meditation/breathing exercises twice a day (and at bedtime). Note: I can't take beta blockers due to my really low BP. I'm on my way to a cardiologist in February, and it can't get here soon enough!

I sometimes start awake with terrible tachycardia (165bpm at times) and breathlessness that lead me to have panic attacks. I usually get the shakes really bad as well; my entire body spasms as I try to breathe and calm down. It usually takes me 45 mins to an hour (and lorazepam) to finally get my heart rate back down to the 120s or lower. It is exhausting. For those suggesting the weighted blanket, I can understand where you are coming from! My husband will lie across my legs or put weight on me to help me calm down and reduce the shaking. It helps tremendously.

I have some form of tactile allodynia, and I was wondering if anyone else here has a similar experience. I've talked to my GP about it on multiple occasions, and he has just shrugged it off (like many of my other symptoms, unfortunately). It usually starts as a small, highly sensitive patch of skin on my face or arm and spreads across the majority of my body; it feels like a sunburn that is bone deep. It hurts on its own, but it can be absolutely excruciating if I am touched by my clothing, etc. This symptom usually indicates the beginning of a "flare" for me. It precedes extreme fatigue, muscle/joint pain, difficulty lifting my limbs/moving, exacerbation of my tachycardia, and difficulty with my grip and dexterity. These flares typically last 2-3 days. Anyone else have this issue?