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  1. I'm so glad someone brought this up. I smoked pot every day for almost 8 years and this was before I was diagnosed with POTS and I was fine. Then I stop smoking to have children and I get POTS. My fiance jokes that maybe I should try it and see how it makes me feel but I'm so scared. I'm not scared of the actual drug since I've done it many times before but now that I have my POTS symptoms I'm scared that it might make them worse. But knowing how I reacted to it before, just making me very mellow, no pain, I actually had an appetite and could eat and it definitily helped me go to sleep and STAY alseep at night. It's like you just never know, I would kick myself if I ever end up trying it and it actually made me feel better.
  2. Got a call back from Sandy. She was very nice and took all my info. Told me to stop the Mestinon for now since it's making my bp low and asked that I call her on Monday. Grubb gets back tonight but is in surgeries tomorrow. I would never go off a medication without the doctor's consent, I was just really hoping I would feel better so I could go off it. It might be the combination of the two but we'll see. Thanks for the post.
  3. He's one of the leading specialists and he's located in Toledo, Ohio. Very knowledgeable and excellend bedside manner. Just went for my first visit last week. Took me 6 months to get in but it was worth the wait. Now if I could only hear from his nurse on what to do?
  4. 1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? Yes, diagnosed venous pooling primary cause. 2. Have you ever been diagnosed with EDS or suspect that you may have it? Not diagnosed, not sure if I have it. 3. Do you experience symptoms when lying down even after a night of sleep in your bed? Not usually 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? No 5. Have you ever been informed by a doctor that you have low blood volume? No 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? I was diagnosed with IBS about 10 years ago 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? My feet and hands get very veiny and red. 8. Did your POTS arrive suddenly? Yes. Either post viral or pregnancy, they are not sure b/c I had a bad virus in my second trimester and went downhill from there. 9. Is your skin pale? No. 10. Please the top 6 worst symptoms that you experience with POTS: Dizzy/lightheaded, palpitations, venous pooling, heat tolerance, fatigue, sensory overload
  5. I do too. I'll Pm you...if I can figure out how. lol
  6. So I started Mestinon 15 mg over the weekend and I posted about it making me tired and feeling out of it and then had a little episode where I lost hearing in my right ear for a couple seconds and had a black out feeling but didn't actually black out. My blood pressure has been pretty low but I'm also taking Toprol 50 mg with it. Dr. Grubb was going to take me off the Toprol if I did well on the Mestinon. I haven't had any palpitations since taking the Mestinon but the tired and out of it feeling is really hard. I called his office and he's out of the office until next week b/c he's in Paris. I just don't know if I should continue taking it or not? DOes it take time to get use to it?
  7. I'm already on Florinef .1 mg once a day and 50 mg Toprol at night. Dr. Grubb prescribed Mestinon last Monday and told me to start taking it over the weekend. I took 15 mg in the morning and it made me so tired. I took another 15 mg the next morning and again, very tired. Dr. Grubb said I tolerated it well we could see about weening me off the Toprol. Today I'm taking the 15 mg at 9 and then again at 2 but I'm scared b/c I drive 60 miles one way to work and it's just making me so tired and kind of feeling "out of it." I have read many pages worth of posts on here about Mestinon and a couple people said they got really tired the first 3 days so I'm trying to stick it out but it's hard when you are so tired to begin with then you add another med that makes it eve worse. Any thoughts or suggestions? I was going to call Dr. Grubb's office but it's only been 2 days and I didn't even take the second dose the first couple of days.
  8. So I had my appt. with Dr. Grubb yesterday. I expected the wait...it was almost 3 hours. But well worth it. He really is a genuine, caring, compassionate physician who is there just b/c he wants to help his patients. He did the whole presentation on his computer and answered my questions and gave me some recommendations. He didn't look at my records so much as to just asking me how I felt and what my symptoms were. He adjusted my pacemaker and had me walk a little to see how I felt. I'm currently on Toprol, Florinef and Midodrine and he's not a big fan of Toprol so he wants me to try Mestinon and if that helps he's going to try and ween me off the Toprol. So we will see. I have horribl sleep issues so he said I could try Melatonin so I'm going to try that also before bed to see if that helps. Then of course he wants me to do the aerobic and resistance exercise too. But at the very end he suprised me and told me to take care of my relationship physically b/c 70% of divorces stem over sexual disturbances and it makes it really hard for him to treat his patients when they are going through other things. It was wierd b/c my fiance and I just had a huge argument on this topic b/c it had been a while since we were intimate and he just doesn't understand how tired I am. Dr. Grubb explained that men measure their masculinity through intercourse so if he's not able to show that then it makes them feel worse. I understand that. It just really seemed like he cared about me as a person and a patient and before we left he gave me a hug. So hopefully this Mestinon will help and also the melatonin so I can get off this Toprol. We shall see. My next follow-up is in 3 - 6 months and since I am from Missouri I will probably wait if I can. I am to see Beverly on my next appt.
  9. So I have my appt. with Dr. Grubb on Monday. They just called me this morning to confirm. I didn't want to say anything until it was confirmed b/c last time he had to cancel. Which I totally understand. Anyone else going to be there?
  10. So I went to Dr. Fouad last month and she ordered cardiac rehab for my POTS and also because I had a pacemaker implanted last August. She said this would help and they've seen really good results with the POTS patients from this. That was her only recommendation besides the support stockins. Well I've been trying to get in and I just got a call from my rehab facility saying it was denied from my insurance. They said I could pursue it further and it might help but the insurance said it wasn't an approved diagnosis. Has anyone had this happen and how did you end up getting your approved? I just don't know what to do considering this was the main recommendation she had and now I'm at square one again.
  11. I have this too. This is one of my worst I think b/c I use to go places. I can't stand sitting at home especially with 2 kids. It's pretty much all the time. I'm laughing to myself b/c when I try to describe it everyone looks at me like I'm crazy but it's the same as many of you. I drive 60 miles one way to work so all the driving stinks especially with that feeling.
  12. I'm on the Mirena as well. I've been spotting off and on for the past couple of months but they say that around 6 months it should taper off. A girl I work with was the same way and she now doesn't have any periods. She still gets a little cramping around the time but no bleeding. I've been getting horrible migrains but I think it's the Florinef. Good luck.
  13. I laid down and they did an IV line and took blood and then injected me with isotope and took more blood. Then they had me lay real still so they could take pictures and they had me sit up for about 10 minutes and took more pictures. I believe the second part was the hemodynamic part and that was to see how the blood flow was going in and out of my heart. I don't have my pamphlets with me so someone might be able to explain it better. Sorry.
  14. They are just knee high stockings. Since I was in Ohio we ate a lot of fast food last week so I wonder if that has something to do with it too. I think once you start having health problems it's easy to worry over every little thing.
  15. Well had my appt. with Dr. Fouad on Tuesday. It was scheduled for 12:30 and didn't get seen until 2. Apparently her nurse didn't let her know I was there. She took down my history and then off I went for the tilt table. Didn't pass out, mind you I was on my meds so that is probably why. Went back to the dr. after the tilt and she ordered a blood volume and hemodynamic. My diastolic dropped more than it should but my systolic was fine. My heart rate increased significantly. Confirmed POTS and venous pooling. Was going to take me off Toprol and put me on Inderal but after the blood volume she decided to keep me on the Toprol b/c she thought the Toprol was helping with my blood volume b/c it was within normal limits. Ordered Qsart and got a call that I have small fiber neuropathy. The nurse called and I asked exactly what it meant and she said she would have the dr. call me and that was on Thursday. Still haven't heart. Dr. Fouad orderd Cardiac Rehab and support stockings and to return in 2 to 4 months. Since I live in Missouri I'll be heading back in 4 probably. Didn't get the HRV b/c the tech wasn't in so will probably do that next time. Overall I was very pleased with my experience. Dr. Fouad was very knowledgable and answered all my questions. You can tell she doesn't work b/c she has to, it's b/c she wants to. Since wearing the stockings I've been having gastro problems. Just yesterday and today. I don't know if that's why but my stomach just does not feel good today. Now i"m scared thinking there's something else going on. I really wish she would have taken me off the Toprol but she's the specialist. Apparently they are combining the neurology lab and cardiology lab this week so that'll be better next time. Also I asked about the difference between seeing the neurologist and the cardiologist and the tech said that neurology testing takes you off your meds. Would that be better I wonder?
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