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HangingByAThread

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  1. That's great. From what I understand, there will be separate training sessions going on for medical professionals.
  2. My whole life has changed but I try to remain positive. The only real date nights my husband and I have had in the last 6 years or so were the times that he drove me to the Cleveland Clinic or Vanderbilt or Johns Hopkins and we had to book hotels to stay for several days of testing (I can't fly - get sick for 2-3 days after). Instead of being depressed about things, I tried to find something fun I could handle for a bit in each place and pretend I was on a vacation. For instance, we went to the Rock & Roll Hall of Fame and saw the Christmas Story Movie House & Museum in Cleveland. We went to the Johnny Cash Museum when we visited Vanderbilt - and my hubby got a kick out of the Cooter's Museum and seeing the General Lee from the Dukes of Hazzard in Nashville. At Johns Hopkins we drove past the big Frank Zappa bust near a library and took pictures with me in front. This weekend I'm attending the Dysautonomia Conference in Philadelphia. I bought a ticket for myself and my husband will probably just catch up on zzzzzzzzzzzzz's in the hotel and watch movies. As warped as it sounds, I found fun during these road trips but being so ill does cause a lot of issues. Thankfully, my husband is a slob and has low standards so he's ok if the apartment looks like a bomb dropped. Now that my kids are teens, I have less responsibility so that helps but for a while it was a real strain seeing how my illness affected my kids - especially my youngest. My older one wants to be a doctor and understands what I am going through - she can actually read subtle signs when I'm ill and I can't hide anything from her. She's a big help. As for my husband and youngest, I can be in a tachycardia or confused because my blood sugar is so low that I need assistance from someone and sugar because I'm in danger, but they are just oblivious and can't tell how I'm feeling. My youngest resents that I'm "always sick" but I do the best I can. I've missed a lot of their activities, all their races when they were on a track team, field trips, etc. but I pick and choose and get to things like music performances, etc. and now that they are older they need me less. My family has wanted to move to the suburbs and buy a house but I can't because the commute would kill me and I would have to quit my job and we need my salary but I do feel guilty about that (there's a lot of crime recently where I live so my kids can't do all the things they want to do). Sometimes when I get upset and cry because I can't take it anymore my husband will say "well, at least you don't have cancer" It is well-meaning but sometimes I think that, yes, I don't have cancer, but my friends that have had cancer have suffered for a year or two and are in remission, living normal lives but I can't even make the commute home or get through my niece's wedding without nearly collapsing and causing a scene. I know my husband also feels guilty because he doesn't make enough money to support me and is always telling me to try to stay home and collect disability, but he's not realistic and we couldn't survive on that - we would have to move in with family. I'm really sorry your wife/family isn't so understanding. It must be rough for them as well, seeing us like this and not being able to do anything to really help, watching all the money spent on doctor appointments, etc.
  3. I had an EMG on both legs some months back and it was completely negative, which really surprised me. I had been complaining for years about odd sensations in my legs, muscle spasms in all different areas that come and go and involuntary leg movements (like my whole left leg used to just jerk and actually lift off the bed when I would lay down on my back). For the last week I have an EXTREME twitch in my right eye (everyone can see it - it comes and goes but it seems that whenever I sneeze that starts it up as well) as well as a muscle twitch in my left arm, not far from my elbow (you could also see the skin moving in that spot as well). I'm at the point where I don't even bother going to the neurologist except for my yearly checkup because everything is always negative and I would just waste money (at this point, they've ruled out things like Parkinsons and MS). I feel that as soon as something is ruled out, I have a similar issue but elsewhere.
  4. Yes!!! I notice this more after a huge meal or after a lot of carbs but at work I eat the same things for lunch every day and I can go for days without this happening and then I might have this happen 3-4 days in a row. I find that standing up helps when the palpitations are extremely bad (I have PACs and PVCs) and I do notice that standing up after eating makes me VERY lightheaded so I have to be extra careful at work after my lunch (and pop extra salt). I also notice that when this is really bad, I'm generally having other symptoms as well (I have daily symptoms but there are just clusters of days where it is impossible to function and then other days where I can pretty much "fake it" and get through the day). I eat small meals/snacks because I have reactive hypoglycemia. I noticed that even before I had my heart and POTS issues, I used to have a blood pressure issue after eating. If I ate a normal meal in a restaurant, I would be FREEZING by the time I left, goose bumps and everything, sometimes even shaking - like all the blood is pooling at my stomach to aid in digestion. I recently saw a new cardiologist and mentioned this to him as well and he said that "certain foods affect the electrical system of the heart" but he didn't go into details. I made a mental note to try to research this but haven't yet. I'm also curious as to what sets off others.
  5. I've asked about a pacemaker but have been told no. I take Methyldopa but only in the morning (so that it doesn't worsen the night time bradycardia - in addition to the bradycardia, I often have horrible tachycardia 30-45 minutes after falling asleep...…….so my body is all over the place). I've been on countless monitors and once the monitoring company even called me at 5:00 a.m. to alert me (The call went like this "Hello, I'm sorry to wake you up so early. Can you tell me, what exactly were you doing?" to which I said "I was sleeping" and they said "you need to call your cardiologist immediately." but refused to tell me the reason. It was later that the doctor told me how low it went (I have bradycardia in the low 20s quite often, as well as heart block) but both cardiologists have said not to worry because it is only when I'm asleep that it's so low. It used to really frighten me that maybe I won't wake up one day but I try not to dwell on it because being scared to fall asleep was only making things worse. Lately, I have been taking more salt tablets before bed, thinking maybe this will help me. I was always told not to have salt at night due to being hyperadrenergic but I find the salt at night helps me feel better.
  6. I'm excited to go - hope I can learn some tips and meet some others (I've never met anyone else who has this) but, at the same time, hoping I have the stamina to sit through it all (it is 2 days 9-4 or 5). I think the real highlight for me will be walking in with a dress and my compression stockings and for once in my life not having people stare at my legs!!
  7. My husband is driving me to the annual conference this weekend. Is there anyone else on this board that is also attending?
  8. I have pots (hyper) and pretty bad bradycardia when I sleep (23 beats a minute - takes me a good hour or more to get out of the bed in the morning because I have to hydrate and down 4 grams of salt to get my blood pressure up). There have been other times where I feel everything slowing down and I can just fall asleep on my feet - so I think it is bradycardia - and then that will be followed by tachycardia.
  9. My doctor instructed me to never lie flat - keep the top of the bed inclined by about 6 inches - SOUND CRAZY BUT HELPS A LOT!
  10. ALL the neurological problems you described your daughters having (other than the seizures) sound exactly like what I experienced BEFORE I was put on a low-dose of Methyldopa by Vanderbilt. If nothing else helps, you might want to mention this to your doctor. It works by stimulating the brain to decrease the activity of the sympathetic nervous system. Before a full workup by (several) specialists, I really thought I had something like Parkinsons or MS due to my odd neurological symptoms but it turned out I was hyperadrenergic. I also have the tendency to have low blood pressure but I just load up on salt tablets and water and that offsets the blood pressure lowering effect of the Methyldopa.
  11. Is anyone going this year? It is July 26-28 in Philadelphia. I've never attended one but am thinking of going. The list of speakers looks interesting. https://www.dysautonomiainternational.org/page.php?ID=205
  12. Just offering my two cents............does she mainly use non-stick pans? Wondering if it could be something in the coating that is bothering you. Also, what about food allergies? I have food allergies and can't be around my mother when she's cooking shellfish and can't be around others eating peanuts. Could something like this be contributing to your feeling ill?
  13. Hello everyone. I was hoping you could give me some tips regarding an upcoming trip to Disney with my family this summer. I went once before - about 5 years ago - (that was before my Hyper-P.O.T.S. diagnosis) and it was pretty awful with me spending a lot of time sitting on the ground or lying flat on the carpet inside of an air-conditioned gift shop while my family waited on line or rode the rides. I’ve since gotten a handle on the day-to-day things and wear full-length compression hose, take tons of salt, and am on Methyldopa, I carry cold water, ice, do the cold towel around the neck, etc. I normally take a “seat cane” (a cane with 3 legs that folds into a seat I can sit on) when I go to a museum because I can’t stand that long but I don’t know if this is do-able there because I don’t think it would be secure on all the rides, plus it is awkward to carry and people often trip over it while I’m walking in close quarters (due to the two other legs jutting out slightly). I can’t go on many rides anyway due to balance/heart issues but do want to be able to stand on the lines with my family. My husband suggested I get a ride on scooter but I can’t sit all day either because then I get horrible pooling behind my knees …..plus I fear being yelled at when I get up out of the scooter, because other guests might think I’m faking because I look totally able-bodied. What have others done in my position? I know Disney says they are accommodating to different disabilities, but I was wondering what worked for you – and how receptive Disney is with someone with P.O.T.S. I understand I need to show up the day of and speak to someone about my condition, but I’d like to know ahead of time to make me feel more at ease. Two years ago, I was told I could be accommodated for jury duty but then they refused to let me put my feet up, made me stand a lot longer than I was able to in a hallway without seats, refused to let me get water or take bathroom breaks (and I got very ill - couldn't get myself home and had to spend the next day in bed) so I’m very nervous when people say they will accommodate because I feel most don't have a clue what I go through on a normal day, even though I look "normal". Thanks for any advice you can give me!
  14. I have the hyper form as well and totally understand how you feel. I was treated by the Vanderbilt Autonomic Dysfunction Center in Nashville and for this subtype they recommend: "Central sympatholytics, such as clonidine (Catapres) and methyldopa (Aldomet), act on the brain to decrease sympathetic nervous system tone. Because of this, these drugs are most beneficial at stabilizing heart rate and blood pressure in patients with central hyperadrenergic POTS" I was put on low-dose methyldopa (it is the only medicine that I take) and it was a god-send!!!! It seems counterproductive because it does lower blood pressure a bit, but I'm on a low dose and I make up for it by (as per doctor's orders) loading up on salt and 96 ounces of water a day. Plus I wear full-length compression stockings from morning until shortly before bed. Before the meds I used to jump all the time at the littlest noise and was so anxious even when my brain was calm. I also sweat a lot and would shake. These symptoms came and went, sometimes my balance was affected and I had trouble walking and a lot of involuntary muscle spasms. The methyldopa quieted all this down and the side-effects are low. Another plus is that it totally did away with my chest pains and migraines (I think that's due to it opening up my blood vessels, which seems counterproductive but works). If other meds don't work, you might want to go this route.
  15. I don't blame you for being upset. I get the "you must be having a panic attack" comment all the time as well - from first responders and in the hospital. I found what really helps is to record my episodes/EKG on my iPhone (I use AliveCor) and then bring that with me. I tell them that my electrophysiologist prescribed the device and then it usually turns into a show and tell session and they sort of start taking me seriously. So sorry you had to go through this. I hope you are feeling better.
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