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.

On 12/17/2020 at 12:37 PM, CallieAndToby22 said:

So 2 nights ago I had another seizure. I can feel when they are coming on now so I can call someone. Usually my mom who has been an RN for 30 years is home, so she witnesses them, but this time my brother and the 911 team witnessed it. I take klonopin and that doesn't help at all, so it's definitely not epileptic. They are very scary b/c apparently they have to assist me in breathing, I remember gasping for air. I only went to the ER to get my platelets checked since my oncologist dropped me last week in front of my mother over telemedicine.  They were high, too high, but I can't explain any of this to an ER doctor; he told me it was going over his head. My neurologist simply says they are "autonomic seizures". The ER says I'm fine sends me home, but I'm worried b/c this keeps happening more and more frequently. As you know, an autonomic specialist recently denied my referral and my oncologist told me to see a psychiatrist and a urologist from NYU told me my thoughts on what meds had helped were "placebo". I only have a PCP. I was put on Jakafi for the MPN Essential Thrombocythemia, jak2 positive, and it destroyed my immune system by depleting my white blood cells. Since getting off of it, my dysautonomia is WAY WAY WORSE and my bladder, basically I'm having trouble urinating at all so always in pain. My oncologist found out about this and just weaseled his way out of the situation since he screwed up. My spleen is even too large...... All I have is a potential telemedicine appt with my PCP to go over "options". I think the only thing I'd be willing to do is the NIH undiagnosed disease program b/c I do believe these 3 diseases are connected somehow, it seems like it'd be really hard for the body to very think blood to places it needs to go. Has anyone been a part of this program? I'm really not sure, my body only wants to sleep. 

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! ❤️

On 4/17/2020 at 1:58 PM, KaciCrochets said:

Does anyone else get brain zaps/electric shocks when they are trying to fall asleep? I know this is a common withdrawal effect from SSRIs, but I don't take those (or really anything else, just hydroxyzine on occasion when I can't sleep because of adrenaline rushes). I didn't get to sleep until 3 am last night because of the constant shocking. Sometimes the shocks come with hot flashes, panic, and adrenaline, sometimes not. Sometimes they cause a muscle twitch, sometimes not. They are really annoying and I have no idea what causes them. All I know is that my sleep has been garbage a lot since the whole pandemic lockdown and I'm so over it.

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!

12 hours ago, Rexie said:

I usually always have hyperesthesia and quite too often allodynia. I use Himalaya ashwagandha root herb and passion flower herb which both help increase GABA to make life tolerable. Tames this stuff right down. If a patch of sudden itch turns painful Benadryl works for me on top of the herbs.

Now if I could only look more fashionable in loose clothing I’d be styling!

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?

On 12/13/2020 at 2:48 PM, LisaMarie said:

 

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?