casey311

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.

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.

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?

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

I do too. I'll Pm you...if I can figure out how. lol

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?

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.

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.

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?

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.

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.

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.

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.

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.

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?

Wow it looks like I sparked a good question. lol I will definitily share my experience when I return. I'm seeing Dr. Fouad on Tuesday and then Beverly with Dr. Grubb's office on Thursday so I will post my experience when I return. Babette I can't wait to hear about yours. I'll be on Monday night wondering what happened with you. lol I wish it was on the same day so we could get to know a little about each other. But good luck!

So I'm heading to Cleveland Clinic to see Dr. Fouad and I'm wondering what the difference is between seeing a cardiologist there and a neurologist? The different testings? Now I'm worried I should be seeing a neurologist. Also, what can I expect to happen at my apt. with her. I know I see her and then they scheduled a tilt table test an hour later but will I go back and see her that day or have to go back another day? I'm traveling from Missouri so don't want to have to keep making trips. Just curious. Casey

Welcome. I'm kind of new here too. I was diagnosed in October and am heading to Cleveleland on Tuesday and I can't wait. I'm not able to get on here that much but it is a pool of information and everyone is so nice and helpful. I hope you find some answers.

I totally understand him cancelling. I know, well, heard that he's been through a lot and I just with him and his family the best and hope things get better for them. I decided to go to Beverly on that day anyway and see what she thinks and if she thinks I need to see him then I'll deal with it then. Thanks for the responses guys!

So I just got the call that they are cancelling Dr. Grubb's march appointments. I'm travelling from Missouri and already had an appt scheduled at the Cleveland Clinic that same week. I'm debating on still going to Cleveland or should I just cancel and wait. I called and seen if I could get in with Beverly and and she has an opening that same day but I also have a pacemaker and Beverly only deals with POTS and NCS, which I was diagnosed with along with Sick Sinus Syndrome. I don't know what to do?

I just went for my follow-up with my neurologist yesterday and I really haven't noticed a difference. He had me on Toprol, Midodrine and Zoloft. When I was on the Toprol and Midodrine I would have these wierd feelings like my heart was beating in my throat and then when he put me on the Zoloft I got this strange feeling like my chest all the way out to my shoulder was on fire. I have a pacemaker due to my heart pausing. So I stopped all the meds and he put me back on Toprol 25 mg at night and then the Midodrine 5 mg 3 x day during the day. I still get feelings like I'm going to pass out and I told him they just come and go. Well he took my blood pressure and heart rate laying and then standing numerous times and said based on the visit he couldn't diagnose POTS. He's the one who first diagnosed me after giving me a tilt and having to lay the table down at 20 minutes b/c I was going to pass out. He said my heart rate kept going up and then it dropped and so did my blood pressure. I told him I was going to see Dr. Blair and Dr. Fouad in March and he thought it was a good idea. I guess he's thinking it's more heart related since I have heart problems and the pacemaker anyway. He's very nice and told me to keep coming back every 3 months until we get this figured out. I was relieved when he said he couldn't really diagnose me, but I know it's still out there. My first cardiologist just diagnosed me with tachy-brady syndrome, and it sounded like yesterday that's what the neurologist was saying so who knows. I just can't wait until March to see what the other doctors say. Good luck to you. I know it's frustrating knowing there is something wrong but no definite answers and why can't they just agree. lol

I justcwant to thank you all for taking the time out to read my post and answer with your well wishes. I'm so thankful I found this site, like so many others. I wish everyone the best of luck dealing with your illnesses. You are all in my thoughts and prayers!

Hello all. I'm here to introduce myself. I am 29 years-old with two beautiful sons and a wonderful fiance. I was diangosed with POTS and NCS in October, October 17th to be exact. Here's my story. During my second pregnancy I started feeling really bad. Lightheaded and dizzy pretty much from the second trimester on. I kept telling my OB and she kept writing it off as my hormones and I would feel better when I delivered. I knew it was something more b/c it was all day every day and I just knew it wasn't normal. So about week 32 I go to my PCP and he does the whole physical and tells me I'm fine and I can go to a cardiologist and neurologist if I wanted but my OB pretty much told me not to waste my time, so I didn't. I had this feeling I should have but didn't. Well I have the baby and still feel like crap 2 weeks after so I go to the cardiologist and he puts me on a heart monitor for 30 days. In that time it recorded my heartbeat down in the 20's and my heart paused for 7.5 seconds. I got a call the next day not to drive and to get in to get a pacemaker implanted. Got the pacemaker implanted August 21 and was still feeling bad so my cardiologist did a tilt table. My heartbeat jumped but he didn't say anything about POTS and my blood pressure was fine so he pumped me full of fluid and sent me home. Two weeks later I go see my neurologist and he had the first TTT results and wanted to do a repeat b/c the report didn't say how often my heart was jumping and how much and I failed the second one. My blood pressure went down to 50/40 or something like that at around the 20 minute mark. I had just went to a new cardiologist in between the ttt's and he turned my pacemaker down from 65 bpm to 50 bpm and although my heart rate jumped around the same I'm wondering if that had something to do with my blood pressure b/c the first ttt my blood pressure was fine and that's when my pacemaker was turned down. Anyway, I've mentioned it to my cardiologist and he doesn't think it had anything to do with it but I haven't mentioned it to my neurologist. I go to him in a couple weeks. He put me on Toprol, which makes me feel bad and he first had me on 25 mg but my blood pressure was getting low so he changed it to 12.5 but I was still dizzy so he prescribed MIdodrine and I have anxiety so he also put me back on Zoloft 50mg. Had a wierd experience driving where my heart started beating really fast and my entire chest out to my shoulders just felt like it was burning so I stopped all meds for a couple days. Stayed on Zoloft b/c it helped my mood, I was getting really depressed having a newborn and not being able to do anything with him and I started the Toprol again and still felt bad with the blood pressure, it felt like I was jsut going to pass out, so I stopped that and started taking the Midodrine just a couple days ago. I still get these feelings in my chest like my heart is beating in my throat and I'll feel my pulse and it's pretty fast so I don't know what's causing this. I know I had a nasty viral infection a couple weeks before I started feeling bad when I was pregnant so I don't know if that's what caused this whole POTS thing or what. I have an appt. with Dr. Grubb on March 5 and it can't come soon enough. I also have an appt. with the Cleveland Clinic in February but I'm going to try and move it back to the same week as Grubb since I'm traveling from Missouri. Like many of you, I'm just trying to do what I can to kick this. I've been excercising but trying to find meds is hard. I might just stop them all until I see Grubb and see what he says. Alright, sorry for the book, I've been lurking for a month now and just got granted access to finally introduce myself and start posting. Thanks for listening. And if anyone has seen Dr. Grubb recently can you let me know how the apt. went? Is he still as thorough as he use to be. And any experiences at the Cleveland Clinic would be much appreciated. Thanks so much.