mtkim

Hi everyone, It's been a while since I've posted. I have spent my time trying to learn to deal with having POTS and now my daughter was just diagnosed with POTS today at University Hospital. She is only 19 years old. She is a full time college student and also and EMT student. She was given a prescription for metoprolol and has high hopes that this will help. I take atenolol and adjust the dosage as needed (doc trusts me yeah!). She says she is not going to let this stop her. She is learning that one of the big things is regular sleep hours are a big help. I am a big person and weigh way more than anybody should, but she is so little and tiny. She only weighs 104 pounds and wears a size 1. It's funny the difference in our size, but evidentally that doesn't make a difference or play a factor. I think one of the reasons I am so heavy is that when I'm really potsy I don't eat a lot, but when I have better days I eat way more than I should to make up for it. We are going to participate in a family study and as they are looking for a hereditary link. I will keep you posted. Kim

I havn't posted in a while and just thought I would give everyone an update. I had my first appointment with Dr. Alsheklee at University Hospital Cleveland on 10/06/2006. I walked out of his office feeling like a load had been taken off my shoulders. What a wonderful doctor! I had a tilt table today, sweat test, and a couple others (my regular cardiologist had scheduled and cancelled 4 tilt table tests on me and by the 5th I was so mad I cancelled it myself ) My regular cardiologist didn't even really wants to consider POTS because of my age (45) and told me that it was a "young person's syndrome." Dr. Alsheklee gave me the confidence to come off of my medications for a few days so that I could have the tests performed, whereas I never got that confidence from my cardiologist. I have to say that Dr. Alsheklee was right in the room with me through all the testing today while a wonderful research assistant (Kevin) performed the tests. I loved it because they allowed my husband to be right there (husband was first to figure out the POTS thing I might add ). I went from 90 beats a minute when I was laying down and as soon as they tilted me I went to a sustained 130s-140s and even touched 150 a couple of times. I didn't pass out, but let me tell you the dizziness and nausea hit my like a brick. Well, I have been officially diagnosed with POTS and it is so nice to know that I'm not crazy, I'm not crazy, I'm not crazy (can't say it enough) . I'm still waiting for some blood work to come back from the Mayo Clinic. I know it's a long hard road, but it is such a relief to actually have the official diagnosis. I am going to actually celebrate because I now have a diagnosis and I am going to treat myself to a shower seat !!!!!! I would't get one before (even though I am extremely tachycardic and symptomatic when I take a shower), after all why would a "crazy person" need a shower seat!. NOW I'M GOING TO TREAT MYSELF TO ONE. I just have to say that I have been so impressed with University Hospital. They have the friendliest staff, doctors, and even the young woman taking money in the parking garage today had a smile that could light up a room. I will keep you all posted. Thanks for letting me talk. If my husband hadn't found this site I don't know what would have happened to me. Again, thanks to all.

I finally got a referral today from my PCP and got up enough nerve to get an appointment at University Hospital in Cleveland with Dr. Chelimsky's colleague (sic). His name is Dr. Alshekhlee. My appointment is in October. I was just wondering if anybody has seen either of these doctors and how was their experience? Thanks for any information, Kim

I know exactly how you feel because I feel the same way. I was never an anxious person, nor was I depressed. I went to the library with my husband last night and just the little bit of time spent standing in the library caused my heart rate to go up to 140. I was anxious about going to the library, wasn't even thinking of being anxious because the library is one of my favorite places. One minute I'm standing there looking at books and the next thing I know my heart rate is 140, I have the shakes, I'm sweating in the air conditioning, and I have that overwhelming sensation from head to toe that I am going to die. This is when I got anxious, not before all of this started. How can you not get anxious when this happens to you in a public place let alone when you are at home? I can tell you that I started seeing a therapist a couple of months ago. It is so nice to go to somebody who assures you that you are not crazy, you are not losing your mind, and that this is a very real thing. This week she told me to keep repeating to myself that the anxiety and depression did not bring on this awful syndrome, but the the awful syndrome brought on the anxiety and depression and to also tell this to my primary care doctor. (she's also the nice lady who told me it was okay if I fired my cardiologist for treating me like I was stupid) I saw my family doctor today and I now have an appointment at University Hospital in Cleveland in October to see someone who specializes in POTS. I will be seeing Dr. Chelimsky's colleague (sic), Dr. Alshekhlee as Dr. Chelimsky did not have an appointment open until May of 2007. HOW MANY OF US ARE THERE ANYWAY? For now I'm going to change the times that I take my beta blocker and see if that helps and if not then we may have to increase it a little bit. Hang in there, as you can tell; we are all in this together. Kim

I've tried BuSpar and probably my biggest problem was that it gave me a headache every day. I have to say though that I starting seeing a therapist three weeks ago and this lady is great! I told her about the POTS on the first day that I saw her. When I saw her today she had actually researched POTS. You know what I loved, most of her information came from this site. As a lot of you already know, my family physician agrees wholeheartedly with the diagnosis of POTS. My cardiologist is a completely different story. The man is soooo condescending. He was so sure that the PE study with ablation would work for me that when it didn't then he pretty much gave up on me. He pretty much told me that since I was fat, over 40, female, and smoked that this was what I could expect and to learn to live with it. He did order a tilt table for me that is scheduled for this Friday, but told me that he was not comfortable treating me at all. He also told me that if he looked closely at every woman's echo that they would all have MVP . GUESS WHAT MY THERAPIST TOLD ME AFTER READING ABOUT POTS? She told me that I could FIRE my cardiologist. My cardiologist had me pretty much convinced that POTS wasn't real and that I was losing my mind. She reassured me that POTS was a very real thing and that she would help me walk through everything so that I could get a grip on this syndrome that is destroying my life. She also told me that if he was only going to go by the tilt table test in order to diagnose me that I should think about it before I decide to have the test done. If anyone out there has not seen a therapist, but is considering it, I would highly recommend it. I walked in there today so anxious and the chest pain was so bad that it felt like an elephant was sitting on my chest. When I left there today I felt like somebody had set me free just by saying "Hey, POTS is real and I'm going to help you deal with it". I know this was "BuSpar" question, but I just had to tell you what happened to me today. Meds: Atenolol 25 mg a.m. and 25 mg p.m.; Zoloft (slowing working up to 50 mg a day), Prilosec, Lasix (swelling in feet gets so bad), and Xanax 0.25 mg once in the morning and once at night. Thanks for listening, Kim

This is going to be long, but my therapist gave me this the other day and I keep getting it out and re-reading it over and over again. Here goes Personal Bill of Rights 1. I have numerous choices in my life beyond mere survival. 2. I have a right to discover and know my child within. 3. I have a right to grieve what I didn't get that I needed, or what I got that I didn't need or want. 4. I have a right to follow my own values and standards. 5. I have a right to recognize and accept my own value system, as appropriate. 6. I have a right to say "no" to anything when I am not ready, it is unsafe or violates my values. 7. I have a right to dignity and respect. 8. I have a right to make decisions. 9. I have a right to determine and honor my own priorities. 10. I have the right to have my own needs and wants be respected by others. 11. I have the right to terminate conversations with people who make me feel put down and humiliated. 12. I have the right not to be responsible for others' behavior, actions, feelings, or problems. 13. I have a right to make mistakes and not have to be perfect. 14. I have a right to expect honesty from others. 15. I have a right to all of my feelings. 16. I have a right to be angry at someone I love. 17. I have a right to be uniquely me, withoug feeling I'm not good enought. 18. I have a right to feel scared, and to say "I'm afraid." 19. I have the right to experience and then leg got of fear, guilt, and shame. 20. I have a right to make decisions based on my feelings, my judgment, or any reason that chose. 21. I have a right to change my mind at any time. 22. I have a right to be happy. 23. I have a right to stability - ie., "roots" and stable healthy relationships of my choice. 24. I have the right to my own personal space and time needs. 25. There is no need to smile when I cry. 26. It is okay to be relaxed, playful and frivolous. 27. I have the right to be flexible, and to be comfortable with doing so. 28. I have the right to change and grown. 29. I have a right to be open to improve communication skills so that I may be understood. 30. I have a right to make friends and be comfortable around people. 31. I have a right to be in a non-abusive environment. 32. I can be healthier than those around me. 33. I can take care of myself, no matter what. 34. I have the right to grieve over actual or threatened losses. 35. I have the right to trust others who earn my trust. 36. I have a right to forgive others and to forgive myself. 37. I have the right to give and receive unconditional love. Taken from "Healing the Child Within" by Charles R.Whitfield, M.D. I too have a long history of family problems and was always made out to be and was called "The Golden Child" by my other siblings, because I was the one that never tried to cause problems and always tried to keep the peace. After I got sick there were a lot of things that I couldn't do for my family anymore and guess what? They are learning to do things on their own and it is not killing any of them. The list of "Rights" above really helps me get by some days though. I hope this helps.

1. Kim. 2. Age 44 3. POTS, SVT, inappropriate sinus tachycardia. 4. Diagnosed with SVT three years ago. Diagnosed with POTS 3 months ago. Inappropriate sinus tachycardia a month ago. IBS and B-12 deficiency for years. 5. Ohio. 6. Rapid heart rate, PVCs and junctional beats like crazy, facial flushing, sweating and chills, stinging creepy crawly sensation in the back of my head, unbelievable fatigue, loss of appetite, any heat at all seems to set my heart off including eating hot food, thirst, a sensation that I am just going to die, can't watch television, look at a computer, read, or do anything that over stimulates me. Believe it or not when I am really bad I can't stand the taste of salt on anything. 7. On good days I am able to take a shower if someone is in the house with me, I can work a 6 hour day in the comfort of my dining room as a medical transcriptionist, but don't count on me doing anything else for the rest of the day, can cook small meals if I don't have to stand for any length of time and I havn't worked that day, can watch some television (watching TV seems to give me a kind of motion sickness), can actually drive about 1/4 of a mile and have coffee with friends. I do what I can on really good days and accept when I am having bad days and don't try to push it. 8. Failed PE study, calcium channel blockers made me unbelievably sick, Lexapro, Paxil, and Cymbalta. I am completely intolerant of anything for pain, except Tylenol, but have systemic reactions to morphine (put in spinal when I had a c-section) and codeine. My doctor always thinks its funny when she prescribes me something new, because she gives me what she calls "baby doses" of everything and works the dosage up as we go. 9. Atenolol 25 mg twice a day, Xanax 0.25 mg twice a day (sometimes three), B-12 injections bi-monthly, Lasix 20 mg a day (legs swell like crazy in the heat), Zoloft 50 mg at bedtime, and just good old Tylenol. I just came off of Tambocor after taking it for 3 1/2 years.

I have always wanted to get called for jury duty and waited for years (sicko person that I am) . Wouldn't you know that right in the middle of being diagnosed, when I was probably at my sickest ever, they called me to jury duty. My doctor didn't have a problem writing a letter for me. There was a number that I could call and I actually talked to the court bailiff. He told me to send the letter and to not worry about it and it was as simple as that. My brother got called for jury duty and he had been deceased for three months, needless to say they told me that he would be excused. He may have died too young, but by golly he got out of jury duty. Kim

A SPECT scan is a study similar to a CT scan or a PET scan. The patient is injected with a radionuclide and the study is performed to provide information about blood flow to tissue. Analyzing blood flow to an organ may help determine how well that organ is functioning. Tissues absorb the radionuclide as it circulates in the blood. A camera rotates around the patient and picks up the radionuclide particles.This information is picked up by a computer that translates the informatoin into 3/D pictures. The study measures cellular/tissue change. The radionuclides are absorbed by healthy tissue at a rate that is different than diseased tissue. Sounds pretty much like a CT scan or a PET scan. Hope this helps, Kim

Dear Tears, I have great admiration for you going through this by yourself. I know that when I got really sick my husband cut back on his hours at work and also quit teaching part time at our local vocational school. At first I felt very guilty and felt like I was the cause of him giving up a lot of his life also. He explained to me that myself and the kids were his first priorty and everything else came after that. He told me that the only reason he taught in the first place was to pay for our yearly vacation and that a vacation wouldn't be any fun if I couldn't go with him anyway. Just hang in there. I don't post much on the forum, but I have learned so much and have gotten so much support just by reading others posts and knowing that there are others out there who feel the same way. Good luck to you, Kim

I have only posted a couple of times, but I check in with the forum regularly. I just thought I'd let you know what has been going on since the diagnosis of POTS came up for me just a few months ago. My cardiologist wanted to wean me off my heart medications so that I could have the tilt table test. In order to wean me off the medications and still keep an eye on me he has inserted a loop monitor. I have been able to wean off the Tambocor completely. On my first interrogration of the loop monitor I was lucky enough to have a wonderful and caring physician's assistant. She did tell me though that I would never be able to come off the beta blocker (atenolol) to have the tilt table test performed (from looking at the results of my first loop monitor interrogation). Of course weaning off the heart medications had made me very anxious and my family physician did not like the fact that I was taking Xanax 0.25 mg t.i.d. (even the the prescription is written for q.i.d.). She started me on Cymbalta this weekend. I took my first dose, didn't feel to bad, just a little loopy, but still able to get something done around the house. I did a few little light chores, poured myself something cold to drink, was walking across the living room and the next thing I knew I was down. I've always had the sensation that I was going to faint, but have never actually gone to the floor (even with heart rates in the 200s I have never hit the ground). I hate it when I start a new medication. I am so hypersensitive to just about everything. Today I went for my second interrogration of the loop monitor and had the same nice lady. She told me she was sending a note to my cardiologist for a referral (this is the part I loved). She told me there is a world reknowned physician in Toledo named Dr. Grubb that she thought could help me. This is the second part of my visit that I loved, she told me that I wasn't crazy and that this was very real and she thought this doctor could help me. I am anxiously awaiting a call from my cardiologist now and am hoping he will give me a referral. Does anyone know if I have to have a referral if my cardiologist doesn't call me back? She did tell me that until we determine if it was the Cymbalta that made me pass out that she would really prefer that I not drive and that if I did have to drive not to use the cruise control. Ever since I got really sick about 3 1/2 years ago I don't do much driving anyway. I have reached a point in my life that I can't do anything by myself. . I really miss the days when I could just take off and go grocery shopping. I used to love the time alone to take a shower, watch television, read, etc. and I never cook anymore. I miss my own cooking. I am a medical transcriptionist and fortunately can work at home, but after a 6-7 hour day of computer time I am just done. I don't want to watch television, play on a computer, read, or do anything that seems to overstimulate me. Does anyone else have this problem? Unlike the majority of you, believe it or not mornings are my best times of the day. From about 5 p.m. til about 10 or 11 p.m. are my worst times. I think I am just overstimulated by that time of the day. I try not to close myself off from my family, but I find I just want to sit in front of the fans in my bedroom with no television, computer, or phone. Thanks for letting me ramble and thanks all of you for just being there. Kim

I have a B-12 deficiency (just a blood test to determine). I receive an injection twice a month. It really does help me, in fact, when I first started getting the injections (looks like red KoolAid) I had a dream that I became addicted to it because it made me feel better and I was taking the metal tops off the vials and just drinking the stuff. If you do have a B-12 deficiency just taking it orally doesn't help. Your body receives the B-12 through absorption so if you are not absorbing it normally then it will not do any good to take it orally. I have had about three MRIs and each has shown white matter lesions with the possibility raised of MS by the radiologist, but this has been ruled out by a neurologist. (always circles). Kim

I have never had a sense of smell. My parents took me to an ENT when I was young and we never found out why I didn't have a sense of smell. I remember the doctor laughing when he had me close my eyes and used an ammonia swab under my nose. I didn't have a clue. I can taste sweet, salt, sour, and hot, but cannot taste spices at all. I absoluted loved salty foods. I was the person who would rather have chips than chocolate any day. When I had my first real down and out episode I lost my craving for salt and I have to force myself to eat more salt now. I do get that really terrible taste in my mouth though. Sometimes it lasts just a day and sometimes it lasts for a week or two. My parents read in the newspaper when I was a teenager that they were treating people without a sense of smell with zinc. You guessed it, I was allergic to zinc. Kim

I'm sure this topic was probably discussed on this forum before, but I just have to ask. Has anyone experienced the severe POTS symptoms after receiving a flu shot? Thanks, Kim

The first time that POTS ever really put me completely down was between November and December. I don't even remember much of that holiday season. I know that I was spending between 16 and 18 hours a day in bed and going back and forth to the ER for fluids. I do know I had a head CT on New Years Eve of that year. The one thing that I do remember was that every night at about 10:00 or 11:00 o'clock I would have a short period of time where I would almost feel human and could even eat. Everyone would come up and sit on the bed with me and just talk. I don't think you ever get over that "failure feeling", but I can tell you that the people who know us and love us never look at us as failures and that is what makes the good days so special. I guess that is my advice. Make every good day special and those are the days that your kids will remember, even if it means sitting at the dinner table, eating McDonald's and listening to the events of their day. You are NOT a failure. You sound like a wonderful Mother who really cares about her family. Take care, Kim

Kate, I too have a close family member (sister) with the same problems that your father has. I have found that with her she can never get past her own things to ever look at anyone else's problems and be sympathetic. Please don't worry about what he thinks (I know he is your father and you probably will worry anyway). You have to put yourself first and do what is right for you. About a month ago we went to the Outer Banks for a week and I think it was one of the bravest thing I have done in a couple of years. We always buy trip interruption insurance and that seems to take some of the anxiety out of it for me. Its great with covering things like if I would get sick right before we left that we wouldn't lose our deposit on our house that we rent. It also covers if I should have problems while we are gone. It would arrange and pay for the kids to get home and also for someone to stay with me until I could get home. The insurance is something that the rental company offers. I was very nervous about going and my family doctor put it to me this way "you can go down there and sit on the porch and watch the ocean and be sick or you can stay at home and look at Ohio weather and be sick". What great advice. We had a very relaxing and uneventful trip. When I felt like taking a nap I did. When I didn't have the energy to cook we ordered in or went out and my teenage boy/girl 17-year-old twins even fixed my husband and I breakfast one morning (best breakfast on the Outer Banks). Take care and do what you can when you can, not what other's might expect of you. Kim

Thank you all very much for your replies. You have made me feel a lot better. After a particularly bad weekend with me crying myself to sleep one evening my husband (my own personal paramedic) decided to give the internet one more shot and the first thing that popped up this time was this site. He came to wake me up and he was so exicted because he finally knew what was the matter with me and my family doctor has definitely agreed. My cardiologist today just out and out told me that he thought POTS was too rare for me to have it. This is the same cardiologist who was so sure that the ablation was going to work that my husband and I really got the feeling that he was mad at me when it was unsuccessul. I think the big problem is that he only wants to listen to the cardiac issues (half listening because he was so busy trying to find the ablation report again). He never wants to hear or discuss any of the medical problems. I wouldn't wish this on anyone, but I would love for him to have just one day of the overwhelming sick feeling that comes over me and to not have the ability to shower without a nap or raise his arms to comb his hair (although not a long reach cuz he's only about 5' tall ). I have been reading this forum for about a month now and I want to say thanks to all of you for listening. You are all so very kind to each other. Wishing you all good days, Kim

This is my first post to the forum. Thanks for bearing with me. My family doc is pretty much convinced that I have POTS. She ordered a tilt table, but my cardiologist red flagged it before I could have it. I saw my cardiologist today for the first time in a little over a year. I take Tambocor and a small dose of atenolol 12.5 mg in the morning and 12.5 mg in the evening. I have had cardiology studies and have even undergone and unsuccessful ablation. Today he couldn't even remember why I was on the cardiac medications that he has me on and he spent more time looking for when I had the ablation than he did actually listening to my husband and I. He finally suggested implanting a loop monitor, weaning me off the cardiac medications, and then performing a tilt table. Weaning off the heart meds is a little scary for me because I don't want to go back to the days when my husband would have to drive me to the hospital with my head hanging out the window while I tried to stay conscious with a heart rate of over 200. Has anyone else had a loop monitor implanted? Get this, he said at least you've never had afib. My husband's jaw dropped because on the very last visit after having a Holter he said he was concerned about there possibly being a small break through of afib. What hurt the most from this doctor today was that he just made me feel terrible about myself. Yes, I know I'm overweight; yes, I know I smoke (I'm a medical transcriptionist and I know the consequeces are), and I drink 2-3 cups of coffee a day. He told me that he just thought I had an addictive personalilty. I don't drink. I have never used drugs, gees I don't even play the lottery. Now I'm afraid to eat one of my favorite cookies because I might be addicted to them too. Sorry for rambling, I'm just a little self conscious right now. Meds are Tambocor, atenolol, Prilosec, Lasix (have to control the swelling some times), Xanax 0.25 mg twice a day, and a baby dose of Zoloft at night. Thanks again