cmtaylor5

I had a very similar exchange with my primary care doctor last month. I'm assuming that you are interested in pursuing a diagnosis of Mast Cell Activation Disorder. Both my neurologist (who has done some testing for me) and my internist suggested I see an allergist for MCAD testing. Neither of them did it themselves and confessed to not knowing much about reading the results. You might want to call around and see if an allergist in your area does this test. As you may know, treatment for MCAD isn't very difficult (most of the meds are OTC) and I've read that people who have this disorder with POTS really improve dramatically with treatment. If MCAD isn't what you're wondering about, I apolgize! Good Luck, Carolyn

Hi, I had an interesting experience at the doctor's office today. I went for an allergic skin reaction to electrodes on my event monitor. My regular doc wasn't in, and I saw a doc I've never met before in the practice. He read my medical chart and said, "Wow, this is really interesting! Tell me about POTS." I gave him a brief overview. One of the things I told him was that my POTS is fairly well controlled on a low dose beta blocker (Toprol XL 25mg), but that I felt like I would be functioning almost entirely normally if I could just up my dose to 50 mg (my electrophysiologist thinks so too), but I can't because my asthma really acts up on a dose that high. The doc today said, "I think I can understand how POTS works from your description. I think Clonidine might be a great choice for you. Have you tried it?" I'm really intrigued because that is also the first line drug of choice that Dr. Grubb listed in his journal article, too. I'm assuming from reading his article that I have the hyperadrenergic form of POTS although I confess to not being tested for it yet. For anybody out there who takes Clonidine......did it work for you? Have you tried beta blockers like metroprolol, atenolol, etc.... with success? What are the downsides or side effects? I'd appreciate any guidance on this topic. Thanks, Carolyn

I could have written this, and I have POTS. My blood pressure doesn't drop much either, my systolic drops a little, and my diatolic climbs a little. After a few minutes of standing with tachy, my pulse pressure gets very narrow. My EP doc said that was enough for a dx, and that some POTS people don't have any blood pressure issues at all. My understanding is the defining characteristic is elevated pulse upon standing or standing for a while (orthostatic tachycardia doesn't always go with orthostatic hypotension). My symptoms did come and go for years. Once I progressed to a certain point, though, they were always present until I was medicated. My first episode of tachycardia at rest happened 30 minutes after taking a brand new antibiotic. For me, that was when my symptoms became more persistent. Lots of people with POTS have IC, also. It is very hard to find "regular doctors" who have a good understanding of dysautonomia. If you post the area you are from, people on the board are very helpful and knowledgeable. Most likely someone can point you in the direction of a doctor with some experience. Good luck on your TTT. Carolyn

There is some overlap with these 2 conditions, at least in diagnostic terms. I would be careful before I would accept an IST dx if I had doubts. I was diagnosed with IST before my POTS diagnosis. I was diagnosed by an electrophysiologist. The only test I had was a 2 week event monitor. It only picked up sinus tachycardia because I only activitated it when I was having tachycardia. Since my office EKG was normal, and I was very nervous in his office (my resting pulse was in the upper 90's) he diagnosed me with IST. That turned out to be a very bad thing. I knew nothing about arrythmias and never thought to tell him that my normal resting pulse was in the low 60's (which pretty much exlcudes a dx of IST). Many electrophysiologists won't dx you with IST if you have a resting pulse below 100. Anyway, he started me on a beta blocker, which worked but caused me huge asthma problems. He then lowered the beta blocker and added a calcium channel blocker. I felt like I was going to die. My blood pressure, which was always low/normal plunged to 75/40. A doctor friend of mine was insistent that I had been misdiagnosed. He sent me to an internist who did other basic tests, like a 24 hour Holter monitor (which showed that my pulse was always normal when I was resting, but would shoot up upon standing, with exertion, or if I stood in one place for too long). I also had a stress test and echocardiogram that showed my heart was structurally normal. I then went to an electrophysiologist my doc friend picked for me. He diagnosed me with POTS in less than 10 minutes. I didn't need a TTT because my blood pressure demonstrated enough just from going from sitting to standing in the office ( I only get pulse pressure narrowing when I go from sitting to standing). I also had lots of other issues that I had never connected to my arrythmia, ie: IBS, urinary frequency, heat intolerance, acid reflux, vision problems,....it never occurred to me that all these things could be linked, but they were. Do you have any other symptoms? I would ask you what tests you had that made your doctor arrive at the IST conclusion? Is he a cardio or electrophysiologist? IST is really a dx of exclusion, as is POTS to a certain extent since there are other conditions that can cause them. If you didn't have a thorough work up, I would pursue more testing. My electrophysiologist is a famous doctor (that's why my friend chose him), and while he is great at dx POTS, he isn't so great at treating it because it's an autonomic nervous system disorder that affects the heart, not a heart disorder. For the best possible treatment, going to see a doc that specializes in POTS (some are neuros some are electrophysiologists) would be a definitive way to get a correct dx. Above all, do not agree to an ablation if you aren't sure you've been properly dx!!!!!! My first doc had me pretty much talked into one after the calcium channel blocker. I just happened to ask him (during a phone conversation) what would happen to my pulse since resting, it was so low. He was shocked that my resting pulse was in the 60's and said flat out, "I have made a mistake." I was only diagnosed with POTS this August, so I am relatively new here. There are lots of others, like Poohbear, who are much more knowledgable. I just wanted to give you my 2 cents, since I was initially misdiagnosed. Good luck and follow your instincts. Carolyn

I have wondered about Mast Cell Activation Disorder for a long time. Like a lot of POTS people, I have had really wierd allergies all my life. I'm an anaphylactic too. From what I've read and discussed with my doctor, beta blockers can be dangerous because they block the chemical that can open your lungs up in an asthma attack. I take a low dose even though I'm mildly asthmatic because my quality of life is 100% better with them. I have to monitor my asthma very closely, though. I have had a weird disorder my whole life that has to do with histamine release and I'm wondering if any other POTS people out there have it. It's called dermatographism (some people call it "slate skin"). Essentially, anything that scratches or rubs on my skin with any force leaves huge welts/hives in the exact shape of the mark. Hence, the term "slate skin" because you can literally write on your skin! When I was younger it was much worse, but I still have it. My doctor said it's an innaproppriate response to stimuli on my skin and it's caused by malfunctioning mast cells that release a ton of histamines. I'm just wondering if there is anyone else out there with this? Carolyn

I have this symptom as well as the shortness of breath (which is different). It is annoying at best, and scary at worst. I also wheeze around cats because I'm allergic to them. I'm a mild asthmatic. I tend to wheeze when having an allergic reaction and sometimes when I have a cold. If you are wheezing around cats, maybe you need to be evaluated for asthma. I watch the pollen counts when I start to feel wheezy ever since I've been on a low dose beta blocker. There is usually a correllation. Also, like Jacquie said, the same thing will happen when I have a cold. I take an Allegra, and this usually makes things improve within a half hour. I think it would be best if you told your doctor about this. Asthma can be dangerous in combination with a beta blocker (it blocks the chemical that your body needs to make to open up your lungs). Before I was diagnosed with POTS, I used my inhaler approx. 1-2x every 2-3 years. Now I use it several times a month, and daily if I have a cold. You can try taking some Benadryl when you feel wheezy. If you feel better once it's in your system, I would talk to my doctor and investigate an asthma diagnosis. Good Luck, Carolyn

Hi, I get something similar, but mostly when I look down. I get it occasionally when I move my head to either side. My neurologist calls it "rebound", and says that it's caused from muscle spasms constricting the nerves in my neck. I get a feeling of disequilibrium, and it feels like my eyesight has to "catch up" when I turn my head. Carolyn

Sorry to hear you are feeling so low. I'm new to the forum, and I'm sure you have way more knowledge than I do, but since I'm newly diagnosed and am just going through rounds of testing to see if my POTS is primary or secondary, some of the symptoms you describe really strike me. Have you been tested for Mast Cell Activation Disorder? The heat intolerance, constant sleeping, adrenaline surges, low bp, nausea, and especially the itching and flushing. I'm being tested for that right now, and my doc was especially insterested in whether or not I had flushing just prior to or during an adrenaline surge. I've also been concerned about what the future holds for me; if I would get better or worse, since my first symptoms I can recall started about 7 years ago but only started to really ruin my life a year ago. My doc told me that it depended on finding the cause, and that age seems to matter when it comes to getting better or getting worse (meaning there are times of life when the disorder is more severe), but in general, most people improve. He is a big believer in positive thinking, (but since he doesn't have a hideous illness that sometimes makes almost every waking moment miserable, I'm not sure he really 'gets it') and one thing he told me is really true, if you think about it. He said that there was no reason not to assume that I'm going to get better. That's true, since nobody has a road map for this thing. I know that just a few months ago, I was in bed almost all of the time. Now, I'm living a normal life for the most part. The only thing I know for sure is that most of us know how you feel! You are not alone! Carolyn

Hi, Just thought I'd tell you what works for me. One of my best friends is an Ear, Nose, and Throat doc and since I started having problems with tachycardia, he won't let me take anything with pseudoepinephrine (sudafed) since it seems to worsen tachycardia for me. Claritin D is loratidine (Claritin) and Sudafed (the "D" stands for decongestant) together. It also made me dizzy, and my head felt tingly. Instead, he has me take Mucinex (over the counter guafinisein). You have to drink it with A LOT of water. It's a mucolitic which means, mucous thinner (sorry to be gross), and for me, it takes away the sinus pressure pretty well. Also, I don't experience any side affects with it. When it's really bad he had me do a sinus lavage with salt water that I make myself. (there are instructions how to do this online, but I felt better having someone show me). The saline solution also loosens stuff up and helps to shrink those sinuses! If I have a full blown infection, I usually take antibiotics, too. He usually tells me to lay off the allergy meds (any antihistimines I'm taking) until the infection has gone away somewhat. I know that some docs do that, they say it dries you out too much to open the sinuses, but others say to keep taking the antihistimines if allergies are what's causing the problem to begin with. I used to get sinus infections 3-4x a year before I had POTS. I often ended up on steroids because I couldn't get them under control. I was really worried once I was diagnosed with POTS that I would be sick constantly with infections since I wouldn't be able to use decongestants anymore. The exact opposite was true, though. The milder stuff has worked better for me. I missed both my usual August and December full blown infections this year. Finally, something positive about POTS for me! Take care. I hope you feel better! Carolyn

Hi, Dizzygirl, I'm new to the forum and thought I'd say, "hello". Sorry you are having such a rough time. I've noticed from other postings that you're from Erie. I am, too. I haven't lived there for 20 years, but my family still lives there, so I visit several times a year. I have multiple herniations in my cervical spine, and my doctors are postulating that there is a connection between them and my POTS. Not sure if they're correct or not, but I do feel better when I'm getting physical therapy. I also get headaches in the back of my neck, but not as severe as you're describing. I also get tender nodules in my neck and back (my neurologist will inject them with saline every month or so to break them up for awhile) but, while you can feel them, you can't see them swelling. Are you sure they aren't swollen lymph nodes? I have to admit, I would be inlcined to go to the doctor and have them looked at, especially if you feel ill. Have you ever been examined when they are flaring up? I know that Erie isn't the center of the universe medically speaking, but I'm thinking someone at Hamot or St. Vincent's would take the symptoms you're describing seriously. My sister lives across the street from a young female electrophysiologist who is supposed to be good. She hasn't been in Erie long. I know that her first name is Kelly, but that's about it. Have you heard of her? When I was diagnosed, she gave my sister a crash course in POTS (my sister did not believe it was a real illness, and Kelly assured her that it was). She seemed to have pretty decent knowledge of it. She told my sister she only treated a couple of patients in Erie with it, though. In the meantime, you probably should look into the doc at Johns Hopkins. If he was able to help, you'd never regret it, not the distance, the finances, or anything. Hope you get to feeling better soon. I'll be thinking about you. Take Care, Carolyn

Sorry, I'm still new at this, and I think I messed up my post. I get what I think is the same SOB thing. It comes and goes. I feel like I can't breathe and that I have to remember to breathe. I've had it with and without a beta blocker. (I also take Toprol XL, it works very well for me). I thought it was my asthma acting up, especially because of the beta blocker. My doctor encouraged me to use my peak flow meter to check my lung capacity whenever I felt this way. I don't know if you've ever used one or not, but you have to take huge breaths in and then as hard and fast as you can, expel all the air that's in your lungs. You usually do it three times. What I found was that my lung capacity wasn't curtailed (so it wasn't my asthma) and oddly enough, after using the peak flow meter, almost every time, my SOB would resolve right away. About a month after I had this happen the first time, I was on an MS website and found that some MS patients experience the same thing. Several of them talked about coughing really hard, or breathing out really hard to resolve it. I'm not sure if we are describing the same thing, and it's always safer to get checked out by a doctor, but, I just thought I'd share what works for me (even if it sounds loopy). Take Care, Carolyn

Hi, I was a runner when my POTS symptoms first got really bad. I would run and my heart rate would elevate into the 180's within less than a minute. That went on for a long time. As my POTS progressed, my heart rate would continue to rise even after I stopped exercising. It was pretty scary. Eventually, I had to stop altogether until I had my diagnosis. I also had a real problem with stair climbing. I really missed the exercising, and I found that lack of exercise seemed to really contribute to my exhaustion. Any time I attempted any exercise though, I would immediately experience uncontrolled tachycardia. Shortly after my dx, I had an MRI to rule out MS and found out that my cervical spine was really in bad shape. My neurologist ordered physical therapy. I didn't have much of a problem with the isometrics that I had to do for my neck/shoulders since I did most of them sitting, and after a while, I talked to the PT about a program to begin building strength up in my legs. He gave me a regimen of exercises that I could do laying down. They were really powerful, and worked really quickly. (they made me really, really sore initially, though) As long as I was laying down, I didn't have any problem at all with disequilibrium or tachycardia. As soon as my legs were stronger, I found that I could tolerate some walking, and between that and my beta blocker, I eventually resumed a pretty normal life that includes lots of physical activity. My PT insisted that I start walking on the treadmill at only 1.5 miles per hour for 10 minutes at a time, but I was able to up the speed pretty quickly. I still can't run, and probably won't ever be able to. My beta blocker controls the tachycardia for walking and limited stair climbing, but I would really need to up it in order to run, and I'm an asthmatic, so I really can't do that. I've also seen others on the forum say that a recumbent bike works well for them. That would make sense, too. Just remember to start slowly and listen to your body. Good luck! Carolyn

Hi, This is my first post, but I've been lurking for a long time. I felt I had to respond, because my experience is exactly like yours, including the days of the month I get my tachy, as well as having episodes in the car pick up line! I was diagnosed with POTS this past August. I also have only "sinus tachycardia" which doesn't seem to worry my doctors, only me! My current electrophysiologist and cardiologist don't refer to sinus tachycardia as an SVT actually, they just consider it a normal, extra fast rate. Most of the time when I have an episode, I'll initially feel my heart pound and I'll feel that anxious feeling you describe. Eventually, my heart rate goes immediately from normal to about 160 and then will slowly drop back to normal after about 10 minutes or so. I agree, it is not fun. However, I've had lots of success eliminating these "attacks" since my diagnosis. In fact, I have only had one. Here are a few things that have helped me. I switched from metropolol 12.5 mg twice a day to Toprol XL 25. It's essentially the same medication, but for some reason, that time release has made all the difference for me. When I was diagnosed, I was sort of disabled. I was extremely fatigued, out of breath, had tachycardia with any exertion, and especially high heart rates when standing in one place for a while. Climbing a flight of stairs meant I would have to rest for at least 15 minutes at the top. I couldn't take a hot shower or blow dry my hair. All that has changed since the Toprol. I have an essentially normal life again. (in fact, we just bought a 3 story house, something I would never have dreamed of doing just 6 months ago). I still have lots of the dysautonomia issues with vision, GI troubles, fibromyalgia, shortness of breath, etc.. but they come and go. It was the tachycardia that was really destroying my life and I as so tired of thinking about it, dreading, and fearing it. Also, I have really learned that my outlook/mood can totally influence my heart rate. After my diagnosis, POTS was almost all I thought about. I was devastated by it. After a couple of weeks of just being miserable and sick, I decided to pay attention to my body and ask myself if I was feeling any better or any worse than the day before. From the first day I felt slightly better, I would tell myself, "You're improving". One day led to another better day, and then another. I gradually increased my activity level. Now everyday is good. I also make sure I get lots of rest and I don't beat myself up when I need to stop what I'm doing and take a break. I've also learned that once I'm having full blown tachycardia attack, I can forget about calming myself down. My heart is just in it's own world. But, I have found that if I start to feel that pounding and get that anxious feeling, 2 things really help to prevent the attack. One, oddly enough is water loading. I'll drink 3-4 8 oz glasses of water in a couple of minutes, and for some reason, that almost always shuts it down. Also, I'll try to get my mood up. Usually, I listen to some music that brings back good memories for me (that's helpful in the car line, if I can't get to any water). A positive attitude and a whole lot of denial has so far kept me on the road to recovery, I firmly believe it. My neurologist totally agrees that this disorder is heavily influenced by mood and hormones. Last of all, I was always told by every heart specialist I have seen (both before and after my diagnosis) that a gradual slowing down of heart rate always indicates that your heart problem is not serious. I've read this as well. I'm not a doctor, and I'm not sure if that's true or not, but it has comforted me. Please don't forget that the holidays are a really stressful time, too! Give yourself permission to believe that you can manage this disorder! You aren't alone, and I know from experience, you can feel better! Take Care, Carolyn