Angelika_23

Wow. Thanks everyone for your support. I was beginning to think that everyone (except me) that had POTS was thin. I am glad to hear from others who have the same struggles. I am not happy that others struggle, but it is nice to know I'm not the only one with this problem. I don't feel that the visit was entirely useless, he had many other interesting things to say and show us. I came home today and found two packages from him - a book and a lot of articles about POTS. Very thoughtful of him to send those. I am combing through the articles tonight. I still wish my weight hadn't been the most active topic while we were there, but I did go to a Weight Watcher's meeting tonight. I will see what I can manage. Maybe the new med will help and I'll be able to start exercising again! The new med, Mestinon, seems to be.... okay. I am not having any bad reactions to it today, the horrible stomach issues seem to be resolved as long as I have a dairy product with it. My husband says I seem a bit steadier, and I am now wearing my contacts all day, but other than that, no huge differences. My dose gets upped again on Friday. Thanks again everyone! Angela

Well, the visit was not everything I had hoped it would be. I had a 3 hour wait, then we spent 3 hours with him. He is an extremely nice person, and so very smart! He explained and explained with flowcharts and presentations. My husband was very intrigued. I simply cannot process that much information. He did confirm that I have post viral POTS (from viral meningitis), and another nervous system problem due to the meningitis. He is going to start me on Mestinon. I am picking up the prescription tonight to start it in the morning. I am very nervous about taking new drugs. Let's hope I react well to it. I am so sensitive to medications. The thing that bothered me most was he kept on about my weight. Yes, I am overweight. I know I am overweight. Not being able to even go up a flight of stairs, or walk up the street, or stay upright period pretty much keeps me from exercising. Which is the reason I sought him out. I need to get my life back, or at least as much of it as possible. Anyway, he kept lecturing me on future health issues if I don't lose weight. It's not like I want to be this heavy. I'm not considered morbidly obese... Anyway, at his suggestion I am going to join weight watchers and see how it goes. If the new med works, then maybe I will be able to go to the Y and exercise again. More good than negative came out of the visit - I was just upset at how much my weight was discussed when I really consider the weight to be a symptom, not the problem. He acted like I didn't understand what he was saying. Anyway, wish me luck with the mestinon... Angela

Do you have regular Zyrtec, or Zyrtec D? Angela

Many times, I have gone without medicine because I couldn't remember if I took it or not. My husband bought me a really neat pill case tray thingy. It holds 7 days of meds, with four compartments per day (Morn, Noon, Eve, Bed). Each day has a label (i.e. Monday) and it pops out of the tray so I can take the day's pills with me. So now, I only set up my meds once a week! Angela

Well, They called and left a message that they had to cancel my appointment, and I am to call back as soon as possible. Of course, I got the message this evening, after work, so I have to wait until tomorrow to call back. I am so upset. I have waited a year to see him. Oh, and he is booked out 13 months at this point. Angela

I feel like I am constantly learning new things about my body! I went to the eye doctor this week. I have not been able to wear my contacts in quite a while, so while the doc was checking my prescription I asked him about my troubles with wearing contacts. He saw the POTS diagnosis in my chart - and knew what it was!- and told me that our tear glands are controlled by the autonomic nervous system, and that was most likely the culprit. So he found some new contacts and gave me some drops to use. He said if my autonomic issues get straightened out, my eye issues will likely resolve. It is funny the eye doctor has heard of POTS, but the neurologist had not... Angela

I will be going to see Dr. Grubb next week. Just wondering if anyone else will be there. Would love to meet others! Also, if anyone has any tips on what to expect, or ideas for what questions to ask, that would be great! Thanks, Angela

Hello, As a fellow POTS person, and an HR Coordinator, maybe I can help you out. If your company has over 50 workers - and you have had one year of employment and worked 1,250 hours in the past 12 mos, then you are eligible for FMLA. FMLA can be taken continuously, or in increments (intermittently). I have had to use my FMLA time with my job. I used it for about 3 weeks continuously, and then after that intermittently. After months of using FMLA intermittently because I couldn't (and still can't) work an 8 hour day, my boss agreed to let me go part time. You would need to get a certification of healthcare provider form filled out, and your company's request for leave of absence form as well. Since your condition is 1. a chronic illness and 2. will require ongoing treatment, you will not having any problem getting the medical part approved. Your company could decide to move you to an alternate position, with equal benefits and pay, if they so desire. You are entitled to FMLA, it is there to protect your job. I would not let your HR department talk you out of using FMLA. If you used only 8 hours a week FMLA, it would take a long time to build up to 12 weeks. Your job would be protected the whole time (unless you were calling off for other reasons, or did something else to jeaopardize your job). Angela

I was doing better, going to the Y and trying to work out some. I was excited that I could do what little I was doing. Then I got a cold. I missed three days of work, and I am in bed now when I absolutely don't have to be out of it. My tachycardia is back, and I'm having the drop spells again. I guess it didn't help that I got my period about the same time... Why can't we get sick like normal people? Now I feel like everything I had accomplished in the past several months is gone, gone, gone. Back to the beginning and work my way up. Sigh. Why can't I start where I left off? I see Dr. Grubb in about a month. I am excited, and a little nervous about that visit. Before, I was afraid he would say I didn't have POTS anymore because I was doing better. No chance of that now. But I am a little nervous about possible medication changes. I am very sensitive to drugs, and I detest changing them because I am afraid I'll end up in the hospital. Thanks for letting me rant. Angela

Hello! I haven't posted in a while (but I have been lurking), but I wanted to give an update. It seems like 5 months ago I was in despair, and now things have changed! If you read my other posts, I posted that I went to Cleveland Clinic to see an EP cardio there, as my EP here said he couldn't do anything else for me. Basically, the current thinking on me is that I have IST on top of the POTS. So I was prescribed Toprol XL for the IST. I was very nervous about this, because Atenolol made me worse, and Cardizem made me worse... But Toprol seems to be doing the job - mostly anyway. I had another holter done, and my HR has gone down 32 BPM!!!! I still cannot climb stairs, and I am still very limited in physical activity, which is very frustrating to me because I am finally feeling almost "normal" whatever that is... So as long as I'm sitting. I went to the YMCA for the first time in over a year. I tried to walk on the treadmill. I could only do 1/4 mile, and it took 20 mins... But I DID do it. That is a 1/4 mile longer than I have walked in a long long time. A lot of prayer has gone into this situation with me. I am very thankful to get the reprieve I have received. As awful as this experience has been, I honestly have to say I have learned from it. The book, "Where Is God When It Hurts" has been invaluable to me. Thank you to JaneEyre for sending it to me! I just wanted to share. I hope that this message gives some hope to others who are in despair. Angela

Hi, I have left sided problems myself. It can be my arm and leg and sometimes even my face! I don't have a drop in BP, but I do get very tachy. I have palpitations. Exertion of any kind makes me worse. I am dizzy a lot, but my syncope has mercifully gone away. I still have lots of balance issues. I can't even stand still in one place for very long. I cannot vacuum, lift, etc. So yes, some of your symptoms remind me of mine. I guess we come in all sorts of different packages! Angela

Hello, My body just doesn't seem to know what it wants to do. The other night, I was feeling odd and my first thought was, "Am I tachycardic?" I checked my pulse, and it wasn't fast. In fact, it seemed like forever between each beat, and sometimes seemed to be irregular. My heart rate was 62. I haven't seen a rate that low while I was standing for.... I don't know how long! I also had some chest pain. I don't know if they were connected or not. I saw my cardio today. He put me on a 24 hr holter. Since that day, I have been staying between 70's and 90's. Which is really really good for me. Angela

Good for you Ellen! VALIDATION is always a good thing! Good luck Angela

So I've been on Toprol for two weeks. I am feeling better, or at least I was until this week. I am trying to catch that stupid cold that everyone else is getting and of course it is setting my POTS off. I am wearing an event monitor right now so they can keep track of what my HR is doing. I have been sending in recordings every night. The doctor said I am still getting readings higher than he likes when I am up and moving around. But I wonder if it is just because my POTS is acting up because I'm trying to get sick... Since I started the Toprol, I have started being VERY tired, more tired than before. It is keeping my heart rate down to the high 90's to low 100's while I am sitting, so that is definitely an improvement. But when I go up stairs, the numbers jump. The doctor said I can increase my dose of Toprol if I want to... But do I want to do that? This is the XR stuff, so it is working even when I am sleeping and my HR goes below normal when I sleep without the Toprol. And sitting I am not too bad, it is just when I climb stairs or walk too far that the numbers go up. I got to 179 while walking the stairs at work yesterday. I've been taking the elevator since. That is not a fun HR. I am glad I am seeing some improvement. I can get through 32 hours a week at work now. It is rough, and I am soooo tired, but I am doing it. Now if I can just get back to dancing... (ha ha) Three months until I get to see Dr. Grubb. I am sooo looking forward to that visit.

I wear a small bracelet, with the red symbol on the front and on the back it says "POTS" and "Call Husband at (cell phone #). That is all I could fit on it as it is a very small bracelet, more like a pretty bangle bracelet. I have gone to the ED and they did look at the bracelet and asked me about it. It makes my family feel better to know I have it just in case, like Flop says, an emergency or car accident or something so they don't give me any wrong medications. My husband knows all my meds and times and also my (now five) diagnoses. Hope this helps Angela

I used to love to dance. I actually met my husband swing dancing! We used to dance all night at dizzying speeds. I used to Lindy Hop! We used to belong to a competition swing dance group. Now, I cannot dance and it makes me very sad. My husband won't dance because I can't. I used to be a size 6, and now I am multiples of it because I cannot tolerate any exercise at all. I wish and hope for the day that I am able to go dancing with that handsome man of mine. It is very hard to hear dance music and not be able to move to it. It is almost like torture. I understand exactly how you feel Tessa. Angela

Hello, Back from my second visit to Cleveland Clinic. The cardiologist there feels I may be having inappropriate sinus tachy along with my POTS, and wants to try me on a beta blocker, Metoprolol. I was alarmed at first because I am already on Midodrine, but he said it is fine to take them together. Anyone have any experience with this? I am to take 25 mg of Metoprolol a day. I also got a new 30 day event monitor (at least this one doesn't make me look like a unibreast...) And, I saw a rheumatologist, and he has diagnosed me with fibromyalgia. I don't know a lot about fibromyalgia, so I will have to do some searches on that. New medicine will be along shortly for that too, after the rheumatologist talks to the cardio. Thanks, Angela

I picked up a copy of my holter monitor results. It was a 24 hour holter. This is what is says: "1. The underlying rhythm is sinus tachycardia. There were frequent areas of tachycardia and sinus arrhythmia. Average PR interval 0.15. Average QRS duration 0.10. Average heart rate was 103, ranging from 53 - 163 bpm. 2. The was one premature supraventricular ectopic beat. This beat was felt to be an aberrantly conducted beat. 3. There were no premature ventricular ectopic beats. 4. No AV-block. 5. There were frequent diary entries of "feeling faint", "heart bumped", "fluttering chest", "chest pain", "shortness of breath", "shaky", which corresponded to tachycardia, including maximum heart rate of 163 bpm and sinus arrhythmia." So, I don't know what the first part of #1 means at all. I don't know what #2 means. I don't know what #3 is, but I am glad I don't have it. Same with #4. And #5 says to me, VALIDATION to my PCP who says there is nothing wrong with me, I just need therapy and medicine. So I guess tachycardia is not an arrhythmia?? This is so confusing... Oh, and when they did my BP before the monitor, it was 116/82 lying, 150/80 standing and 150/90 sitting. Any thoughts? Angela

I have my appointments for Cleveland Clinic for next week already. I am to see a rheumatologist and a cardiologist on the same day. Lets hope these appointments go better for me. Thanks, Angela

Hey all, Well, my visit wasn't what I expected. I saw a neurosurgeon who took less than ten minutes to tell me I am not a candidate for Chiari surgery, and Chiari isn't causing my POTS. End of story. So I told him, Okay, Chiari isn't the problem, but I am still sick, so I need some help. He suggested I come back to Cincinnati, and I told him we didn't have specialists here that could help me. So he said he'd see what he could do about referring me to a rheumatologist, cardiologist and a neurologist there at Cleveland Clinic. So I get to go back. I was so sick this morning from walking around the clinic... Now I am so tired. I should have gotten a wheelchair I guess. I thought my heart was going to pound out of my chest. I would love to know what my HR was... Well, at least I don't have to have brain surgery. Hoping you are all doing well! Angela

I took atenolol and it made me worse, more tachycardic. I'm not sure why. But you shouldn't necessarily be worried, because I react very oddly to medications, where others handle them fine.

Hi All! I got a call today from the Cleveland Clinic, and they want me to be there on Monday at 7:30 a.m. I can't believe how fast this is moving! They called and said they knew I have multiple issues (POTS and Chiari) and that they will have to form a team to help me. So I am going Monday for a consultation with a neurosurgeon. I wonder what he will say. So far I have one neurosurgeon saying I need surgery, the other one says I don't. My cardio says he thinks the Chiari is causing the POTS and it will never be controlled until I get the Chiari handled. So this new doctor will be the tie-breaker. Also, I got my 24 hr holter monitor early results back. Mostly sinus tachy. Highest heart rate = 168, lowest heart rate = 53 so they told me my average heart rate is 103. What does that mean, exactly? Wish me luck and some answers too! Angela

Maxine: Yes, I do call Sherry everyday, begging her to find a cancellation for me. She is a nice lady, and says she is doing everything she can to get me in sooner. Tearose: Sometimes I do okay at work, sometimes I don't. Lately they've been having trouble with the heating and air system, so on the cold days it is cold, but on the warm days the heat is on. I can tolerate being cold better than I can tolerate being too hot. Yes, I always try to maintain a sense of humor about myself. Most people don't "get it", but you guys always understand. I have horrible red spots where the leads were fastened on my skin. But that monitor should have caught every troublesome symptom I've ever had, since they all "popped up" at the same time the last few days! Thanks Flop: I am actually feeling a teeny bit better today, the symptoms are starting to subside. I hope they abate for a long time! My doc made me go back on the Florinef, the half dose, starting yesterday. He is upset with me that I stopped taking it. I tried to explain why, but he was having none of it, and said to take the small dose that I can tolerate reasonably well. Sophia: You are a dear, and yes, I am being VERY cautious about that. I want to make sure I am doing the absolute right thing. I have two more names of doctors that I may be consulting with. I was advised to find a doctor who specialized in chiari AND POTS, but I don't have much hope that such an animal exists. Thanks Morgan: I know you are going through such a tough time too, and I really appreciate your support. Sometimes I just feel so worn down by all of this. You are all wonderful! Angela

Yay for you!!!!!!! I am so happy you are getting answers and some validation. That has to feel wonderful!!! Angela

I take the white fludrocortisone pills by Global and I have never been directed to refrigerate them, either. Guess I will be calling the pharmacist tomorrow. Angela