BuffRockChick

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About BuffRockChick

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  1. You're not alone! I searched the forum recently and found others have discussed it. Can I ask how clonidine helps you with ADHD? I have ADHD too and I'd prefer medication that does double duty for ADHD and POTS. I was on methylphenidate before I was aware of POTS (but I had it then). I remember I was standing up ALL DAY LONG. Before and after methylphenidate I am in bed 4 -8 hours a day. I had trouble with weight loss and nausea so I'm leery of trying methylphenidate again.
  2. Update!! I had a rough day yesterday, fell 10 times and fainted once. Hubby saw me faint. I've only fainted twice and he has seen both times. I'm glad. He pretty much has no idea what it's really like for me. I had cardiology appointment this morning. Cardiologist thinks it is POTS. They did EKG and I have 48 holter on now. Will have echocardiogram on Tuesday and tilt table test to be scheduled ASAP.
  3. (Written May 30, I forgot to post it) Thanks @AbeFroman! It's great to see how others are coping with POTS and try what works for them! My husband is starting to change his attitude (very slowly). I think the biggest single thing to change how he was thinking was when he asked "Why did he refer you to a neurologist?!" and I replied "Because it's a dysfunction of the autonomic nervous system." He's starting to see (but is not yet willing to accept) that I'm more functional when he backs off and doesn't question my need for rest. If I try to get up and go on 7 hours of sleep, nothing good comes of it. But if I stay in bed and sleep through the morning, I can have a productive afternoon. Haha, I'm up with less than 10 hours of sleep to get to an important appointment this morning, and... I fell twice between my bed and the bathroom.
  4. Sure, you can add it. I did drink 16 oz cold water all at once, and my blood pressure *dropped*. Weird. I asked my cardiologist this morning. He was not surprised and told me to consume even more salt.
  5. When I drink water, I'm more dizzy and fall more. I normally drink milk (excellent electrolyte). We ran out of milk so I drank water. I fell (hard!) 10 times today and fainted once. My blood pressure was 20 mmHg higher than usual and rose when standing, so definitely not OH. I was eating salty snacks all day. Why would I be more dizzy and fall from drinking water? Makes no sense.
  6. Hi Shelby! Many ((((hugs)))) to you! I have fewer diagnoses than you and am older (30's) but I can relate completely. My husband doesn't get it. He didn't believe it and thought I was faking. So I had him take my pulse before and after 10 minutes of standing. It was "only" 120 and then I fainted. His first words were about if I was faking, but I later learned from his employees that he was pretty freaked out by it. He kinda gets the tachycardia now. He doesn't really believe it yet because I haven't had tilt table test. I have preliminary POTS diagnosis from my primary doc and a neurologist. I see a cardiologist in 2 days!!! Anyway, he really does not understand the fatigue. He DOES NOT GET IT. He doesn't understand that dramatic blood pressure changes leave me feeling disoriented and irritable. He has thought of me as crabby, lazy, and crazy for 8 years and it's hard for him to adjust. As a parent, I feel pretty confident that their seeming annoyance and pushiness is motivated by FEAR. They're afraid for your future - what happens if you don't graduate or don't graduate on time. How are you going to support yourself as an adult? These are the big questions looming over their heads. They're TERRIFIED for you. They're freaking out because they love you so much. You may want to talk to your parents about Social Security Disability for yourself. It's not a whole lot and it sucks to accept it, but you do need resources for transitioning into adulthood and independence. You need continuation of health care as you transition into adulthood. Perhaps you can look at jobs that can be done on your own terms and direct your education towards something you can do even when you're ill. I know it's all scary and exhausting, but anything you can do to grow more independent and secure will help relieve your parents' fear and their pressure on you. I wish you the best! I hope you hang around here and participate.
  7. I had another episode of postprandial hypotension. It was after a big meal. I don't know why I have it sometimes and not other times. I know big meals and high carb are common triggers, but I'm not aware of a pattern for myself. I read that postprandial hypotension is common in the elderly (hah, I'm 32) and those with dysautonomia disorders.
  8. Read about hyperandrenergic subtype of POTS, also called "hyperPOTS". It's a likely explanation for increase in blood pressure upon standing. It's also associated with headache, irritability, and anxiety. Glad you have cardiology appointment! I hope you get answers!
  9. I enjoy reading your updates! I hope your recovery from over-exertion continues smoothly.
  10. When I have worked in air conditioning during the day, those years I seemed to struggle most with heat tolerance. I'm trying to avoid air conditioning this year to see if it makes much a difference. I'll use AC in the car or in bedroom to bring it down to outside temperature.
  11. @Elisabeth417, regarding air pressure changes, I found an old thread on this forum with POTSies discussing they felt better in high air pressure, and worse with low air pressure like preceding a cool front. I feel bad before a cool front, and fantastic as the front passes - temperature drops and air pressure rises sharply. You're definitely not alone in feeling worse with weather changes!
  12. I have upcoming cardiology appointment, I will definitely mention everything! I am exploring how much heat is an issue for me. Last year August I had a bad POTS flare and I remember feeling faint in the heat, 90 degrees about. What I can tell so far is that heat raises my "resting" heart rate. Resting in quotes because my 24 hour resting is still the same, but just sitting around during the day, my heart rate is often 20 bpm higher than in cooler temperatures. That leaves me feeeling unwell faster. 45 bpm sitting/laying to 95 bpm standing is tolerable, but 90 bpm increasing to 120 bpm gives me dizziness and presyncope sometimes. I'm trying to adjust to the temperature, we're in upper 70's and 80's now. If my heart rate is higher at night, I'll sleep in the guest room and run the window air conditioner a bit before bed. I have noticed caffeine first thing in the morning reduces symptoms. It's a vasoconstrictor. I had caffeine the whole past week and sleeping late in the morning. My husband's family was in town vacationing and I didn't want to be "drawing attention to myself" with falling, etc. They don't know what's up yet. I have noticed more blood pooling in eat and without caffeine. The veins in my legs/feet are bulging today when I stand and I get irritable. When I lie down and put my feet up my veins go back to normal and my irritability is gone. Coincidence? It was worse earlier today and getting better now in the evening. I'm going to talk to my cardiologist to see if stimulant medication is appropriate. When I was on methlypehnidate for ADHD I didn't have POTS symptoms and was on my feet all day. Then I got a dose increase and had appetite suppression and nausea, lost a ton of weight and had a major POTS flare. Caffeine helps with my POTS, but not as well and doesn't do much of anything for my ADHD. I'm also going to ask about guanficine which is supposed to regulate labile blood pressure and is also an ADHD med. But since my blood pressure tends to be more low than high I don't know if I'm a candidate for taking it. If stimulants are a "no", then maybe midrodine?
  13. I thought I had reactive hypoglycemia, but blood glucose was fine. Barely budged with 65 g sugar in a soda first thing in the morning. That was before I discovered POTS.
  14. I'm glad you're on the road to recovery! Be gentle with yourself! Move forward, but gently! Your story reminds me of @DizzyGirls who posted on here in the last 24 hours about spinal fluid pressure as relating to migraines. I hope you find time to read her recent posts. I'm enjoying perfect weather over here. Not doing much. I started piano lessons, so I've been practicing piano when I'm dizzy. I feel emotionally better to sit at the piano than lie down. My heart rate is about 20 bpm higher than lying down, but as long as I'm not dizzy I don't mind. I've had a couple scares. Yesterday I pushed myself to go out to the garden even though I wasn't feeling great. Gardening was fine, but walking up the slope back to the house was too much. Heart rate 156 standing still, and I started having left arm pain that stayed around for a few hours. Very unsettling. I was fatigued and had cognitive symptoms after too. I spoke to my husband on the phone and he thought I'd hung up. I was there - lying on the bathroom floor unable to make my mouth move to speak. In the evening I was able to walk back from the garden without bad effects after. @Elisabeth417, have you tried raising the head of your bed with risers or bricks? Perhaps that would be a gentler way to fight gravity?
  15. Perhaps he needs to consume the sodium over more time? What happens if you break it up into 3 or 6 times per day? Have you had him drink 3 liters water at the same rate as if he'd taken salt tablets to isolate variables and see whether the water or the salt is the problem? I get sick from drinking water, just a thought.