Hippopotsamus

@LibbySue I experienced exact same thing! Diagnosed with inattentive ADHD at 39, I always had symptoms but didn’t recognize them. Procrastination was always an issue for me, became worse when POTS hit, I would put off things because fear of symptoms. But maybe blood flow to brain an issue too, feeling like it was more effort to organize my thoughts and myself. ADHD got bad enough for me with the long-Covid brain fog that I went for the neuro-cognitive testing. Thinking of trying medication but have not yet.

Hello! I have POTS and over the past 2 years have gained about 50lbs. Overeating is an issue. Many times I eat a decent sized meal and still feel hungry and crave more food. If I have nervous system issues elsewhere that cause signals not to work properly, I was wondering if the signal that “I’m feeling full” could be broken too? It might help me to recognize that it’s just a faulty signal and I don’t need more food. Wondered if anyone else has had this experience.

@Pistol& @RecipeForDisasterthanks so much for the replies. My brother was diagnosed as a child because he was also hyperactive. But after reading about how it presents in females I realize that both my mother and myself have it.

@Pistoldoes the methylphenidate increase your heart rate or cause anxiety? Are you on a beta blocker too? I’m on metoprolol which helps my POTS and I am having a eureka couple of days researching ADHD and realizing I’ve had it all along and it explains so much! I used to drink coffee and it used to calm me down but since POTS it gives me chest pain and anxiety. Wondering if all stimulants will do this or if it is a caffeine metabolism thing.

I had an intense electric shock feeling in my head during the relapse I had last year. It was after a lot of upright activity while unmedicated a couple weeks after my initial Covid infection. I was washing dishes and head felt like an electric current went through it, then head felt cold, and kind of numb. Had to lie on the floor. Then the next week had terrible anxiety and developed a bunch of new infection symptoms. Not sure if it was infection leading to brain stuff or brain stuff breaking then my immune system going nuts.

Hope you and your family are feeling better soon!

@Pistol, I can identify with the high adrenaline. I remember telling my mom in the summers that when I didn’t have any school stress that I just didn’t feel well. I felt a lot better physically when very busy. Then in my 20s worked very high stress job and was very comfortable with it mentally but my body just kept declining till it broke.

Hi everyone, I just wondered looking back how many of you had mild orthostatic symptoms as a child/teenager, then went on to develop more severe autonomic dysfunction/POTS as an adult. I recall many episodes of “visual snow” that looked like a static tv screen filling my vision that would remain until I sat down, often when standing very still or in warm places. Sometimes accompanied by muffled hearing or pounding heart. When I developed POTS in my 30s (stress+virus+pregnancy) the decompensation was severe and my autonomic nervous system went totally bonkers but looking back I now think that I was predisposed to this, and was like a time bomb waiting for a trigger. Anyone else?

I have had episodes like this with my teeth chattering so hard I thought I was going to break a tooth. They are rare but awful!

Yup! I get this if I have been stationary for a while and then get up and move around. I always thought it is just another symptom related to the blood pooling and not getting to my lungs fast enough. SOB from lack of perfusion.

@CallieAndToby22 I also have interstitial cystitis and have had better luck with any of the electrolyte powders that come in the powder packets (that don’t have the effervescence) like SOS or Liquid IV. I used to drink Nuun daily and it kills me now, the acid and the carbonation. I was hesitant to try something else but was pleasantly surprised that I only had the mildest urinary symptoms with the liquid IV in several flavors: guava, watermelon, açaí berry or the watermelon SOS.

I had a flare with the flu shot last year, lasted about 3 weeks. I got Moderna in Jan & Feb and each time had flare that lasted less than 48 hours. I got Covid in March 2020 and am not back to baseline. Keep having relapses every couple months.

@Pistol - thank you for your thoughtful response. I have been so hesitant to try something new out of fear that it could make things worse (what if I have a reaction and can’t take care of my kids or go to work) but then I consider my metoprolol and how much I put up a fight about restarting that but then, hey!-I can stand up for more than 2 minutes, I can manage to walk around the grocery store without my lights going dim and worrying about going down in the aisle, I can do laundry without pushing 140bpm. What if a medication could make it so I don’t feel like I’m plugged into an outlet constantly? Or help so I don’t feel flulike & hungover and angry from cleaning up the playroom? Ugh. I think I’m ready.

Hi folks, I am wondering which SSRI or SNRI you are taking and which specific symptoms they improve for you. My beta blocker controls my heart rate so I can stand up/work/cook, etc. I am functional but still very uncomfortable on a daily basis. I still really struggle with post-exertional fatigue (and after activity the excess adrenaline impacts my mood-anger/compulsiveness/inattention/irritability/dissociation/neurosis). I only feel this way after overdoing activity, particularly cleaning and to a lesser degree with the hormone shifts at certain points of my cycle. Any advice? Medication? More hydration? Yoga? Meditation? What helps you with this?? I don’t know whether to blame it on brain hypoperfusion, excess adrenaline, inflammation or serotonin deficiency but I’m finally starting to accept that maybe I can’t fix this on my own out of sheer effort. There is an actual problem that medication could help to make it so I don’t have to fight so hard while continuing to crash and burn. I have a good support system and am a glass half full person in general so this direct effect that POTS seems to have on my behavior has been troubling me.

Hello! Where I live is pretty cold right now and I’m missing having tea like the good old days before I had POTS. I have to strictly avoid caffeine, and do ok with decaf green tea (even the decaf black tea triggers some symptoms for me). I was wondering if anyone out there has a warm drink that helps with symptoms instead of making them worse?

Had first Moderna shot 2 weeks ago and finally feel like I am back to my pre-shot baseline. I was very tired day 1, aches on days 2-3, worse POTS/neuro symptoms days 4-6, then more fatigue for a week. I had POTS pre-Covid with minimal symptoms then got Covid in March 2020, been recovering ever since, POTS + long Covid.

Anyone tried the Apollo Neuro band? It is supposed to improve SNS/PANS balance and increase HRV. My HRV is always garbage which makes sense, as I always feel like I’m stuck in fight/flight with the POTS adrenaline. Just wondering if anyone had experience with it.

Thanks @cmep37 I can relate to the “enormous energy” required to make it stop. Relaxation exercises can sometimes fix it but I do feel like sometimes I don’t have the strength to concentrate or my mind is just racing and I’m half asleep so I’m just stuck anxious and aggravated and shaking!

Thanks @POTSius & @Pistol, I haven’t tried adding heat, will see if it helps! Hate how episodes throw off my sleep and make me tired and achy all the next day.

Anyone else have this? Or insight into why this happens? If I wake up in the middle of the night to walk to the bathroom to urinate then lay back down in bed, I start shaking. Looks like intense chills but I’m not really cold. Sometimes accompanied by headache/anxiety. I’m conscious and do not feel faint. Blood sugar fine. HR and BP ok. Is this from the arousal of my nervous system from sleep? Blood volume/electrolyte stuff? Just wondering if I’m the only one.

@Pistol thanks for sharing that hopeful info! I think all of the research they are doing with regard to immunity and “autoantibodies” in particular is going to be key to solving the POTS puzzle.I got the double whammy of having POTS and “Long-Covid” so I have been following the support group research threads and this is going to be the laser focus of new research- autoantibodies, the mast-cell histamine connection... because so many are developing dysautonomia and ME post-Covid they can’t ignore it any longer. Way too many young people going to need vast healthcare resources they were not planning for unless they figure it out.

@Abe I hope you find relief too! I used to get this feeling to a lesser degree In my 20s before I developed full blown dysautonomia in my thirties. I could take lorazepam 0.25-0.5 mg once or twice and it was like it reset my system and I would feel better for months. Once I had POTS I tried it again and had complete opposite reaction- it was like my body had a panic attack (lightheaded, tachy, extreme dry mouth).

@Pistol & @Delta thanks for your responses! I’m currently on metoprolol ER 12.5mg daily and it helps me with tolerating activity but still I buzz! I never feel like my body is calm (even if my mind is). I was wondering about bupropion, because the SSRIs don’t agree with me. Had an episode after 5 days on sertraline with HR all over the place and hot flashes. CBD and alcohol are out. I am very med sensitive. Pistol, what dose and form helped you? There is IR, SR, and XR. Are you med sensitive too?

Has anyone found a medication that takes away the buzzing feeling? I feel like I’m plugged into an electrical outlet most of the time.

So I have a follow up question. How much salt helps you & how do you get it? I have seen the range of 2-10 grams! I am not sure where in that range I should fall (and I‘m likely not getting enough because I’m so symptomatic right now?) I have tried liberally salting food, Nuun electrolyte tabs for my water, and SaltSticks (the saltsticks give me a really “yucky” head/chest/belly sensation about 15 minutes after I take them that passes after a couple minutes so they are not my favorite even though they are convenient.) What do you aim for each day for salt/water that helps you?