calypso

Katherine, I haven't had this one since my POTS was super-bad -- the first few weeks I had it. I would think it's some sort of bodily response (hormone fluctuations or neurotransmitters or something) that occurs in people with sensitive nervous systems. My new rule is to give any new symptom a few weeks and it usually passes. I bet yours will, too. My latest oddity is a burning hot sensation on my left lower leg. It only happens a half dozen or so times a week, and it's not really painful, but it's just plain weird. I won't even tell my doctor because he'll probably make me get an MRI or put me through more tests that I don't want. I wish you plenty of prickly feeling-free days ahead! Amy

Morgan, That really *****. I hope your doc is able to at least just go with trial and error in terms of trying new meds and treatments on you. Or maybe he can call down there himself and see if there's anyone who can help him. Doctors tend to be pretty good about helping each other that way. Maybe he should see if any of his fellow med school graduates are now working in the area of dysautonomia. I know it feels like there's little hope, but you have to try to find some happiness in your life -- whether things are crap right now or not. Even if it's for five minutes a day. Go do something that makes you happy. Eat a sundae. Go shopping. Pick daisies. Whatever you like doing. We are all here for you. Amy

Sue, Your symptoms sound very much like mine. Although many people here struggle with weakness and shortness of breath, those are my worst symptoms, first and foremost. I haven't breathed normally since developing POTS (but I still have hope that I will soon!) eight months ago and have lost so much weight and especially muscle mass that I am literally down to skin and bones. I was told by my doc that the constant release of excess adrenaline just makes you burn off everything at a fast rate. Have you also had weight loss? Did you have an event that triggered your illness -- maybe a viral infection, a pregnancy or something? My POTS came just days after delivering my first child. This seems to be common. Others here developed POTS after an infection, and yet others just got it out of the blue. There is good chance for recovery. Take very good care of yourself (eat nutritious and balanced frequent meals, drink plenty of water, etc.) and try your best to exercise, even if it's a walk for 15 minutes a day. Exercise helps you burn off stress hormones like adrenaline and helps prevent more muscle weakness. You should also see an autonomic specialist -- or a good cardiologist or neurologist for a proper diagnosis. Good luck, Amy

Jessica, info Try this site: http://dbapps.ama-assn.org/aps/amahg.htm This is the AMA's doctor dinder, and although it is time-consuming, you will get some background info on all the possible docs in your area. You can maybe start by searching under cardiology or neurology and see what they have listed as their personal interests or specialties. Good luck, Amy

I experienced the same kind of sudden but short-lived improvement, followed by a couple weeks of being VERY tired. The BBs cause fatigue, dry mouth and worsen shortness of breath. That's probably what the reference to "miserable" adjustment is getting at. I don't know what you should do about your BP, but I do know that if your diastolic is normally 70-80, that shouldn't be very adversely affected (since this is the higher range of normal). But BBs have a bigger effect on systolic pressure, and you may need extra salt and fluids to keep it up. Good luck, Amy

Maybe I am confused, but if you don't have ANY problems standing up, why and how do you have POTS? If you have a high heart rate all the time, you would be more likely to have inappropriate sinus tachycardia. Is high blood pressure when you stand the only symptom you have right now? Maybe that's your only problem. No offense, but if you don't have POTS or don't think you have POTS, maybe you should find a different support site. Medhelp.org has a site for people with heart & BP problems. Maybe those people would help you better. Because you really don't seem to have POTS issues. I am not trying to be rude; I am just trying to figure out how you can best be helped. Amy

I just found the vitamins I take on the Internet. They're actually not that expensive, are gluten-free (good for you!) and are considered a multivitamin. Here's the link: http://www.gnld.com/store/Product.aspx?STO...roduct_id=10007 I pay about $35 for a two-month supply. Notice the vitamins only provide 33% of your vitamin E content. If you are at risk for heart disease, you may want to take a supplement. Hope that if you decide to try these, they help you out. Another brand I take for vit. C is Solaray; I like these pretty well too. Amy

Katherine, Where do you buy yogurt w/ no sugar? The least-sweetened yogurt I can find is plain organic yogurt, but it still has 10 g of sugar, which is a fair amount. But I suppose it's better than the 25 that is in many yogurts. If you know of any brands that have less, I'd be interested. Thanks for your quick response! Amy

I have the perfect vitamins for you, but the box is at home and I am at work, and I am going crazy trying to think of the name! I will post later once I have the name of them. They are kind of expensive but well worth it. They are not standard multivitamins, but are targeted toward women with chronic fatigue-type illnesses. They are a combo of B vitamins, zinc, mag, pantothenic acid, etc. I could not function without them. They are iron-free, so you would have to take iron separately, but they do have 400 mcg of folic acid that we are supposed to take for being of childbearing age. Amy

YES, YES, YES! This has bothered me pretty consistently since developing POTS. I hate it. Especially when my newborn daughter would cry and I would have to cover my ears with a pillow because the sound actually made me sick to my stomach. It got better after about three months, then went I went on Lexapro about six weeks ago it got bad again. It occurs even with normal volume sounds -- for instance, if someone is talking even a little too close to my ears, I start to get a vibration-like sound on top of that and it kills my ears. I also have become hypersensitive -- my body overreacts to things that startle me, like sudden noises and such. I feel like I am about to have a heart attack because it will be all quiet at night, and something will fall off my dresser or something and I will jump about five feet. I try so hard to relax but I am just so jumpy. Wish I had some ways to get rid of this, but I don't. Just try to take good care of yourself and avoid the noise when you can. Amy

Thanks for all of your advice. I had two glucose tolerance tests during my second trimester of pregnancy and I had a blood sugar of 77 or so both times; I was told this was excellent. I also had a fasting glucose done for a life insurance exam in January (about two months after I had my daughter) and it was 67, so I was a tiny bit hypoglycemic. Do you think I might need another one? I am guessing this must be related to POTS, but then again I never had this happen until the last week, and I have had POTS now for eight months. I am so afraid of diabetes because I watched my dad die slowly with it over the course of 20 years. But I am not at all overweight and he had the insulin resistance Type II form, so that's unlikely I think. But it's strange how I feel like my blood sugar is bouncing all over the place. I get so tired and feel a little nauseated and get hot flashes after I eat, like my blood sugar is high. I suppose next time I visit my doctor I will just ask for another fasting glucose test to make sure there have been no changes. I have to admit I eat a LOT of carbs. But I do not eat refined carbs much. I eat a lot of organic granola, organic cereals (I LOVE low-sugar cereal), fat-free yogurt, fruit and whole wheat bread. When you guys say cut out sugar, do you mean ALL sugar -- like even the sugars that come in granola and yogurt? I don't see how I could do that. I will not be a happy camper on a low-carb diet. I don't eat meat (except seafood) anymore because it makes me feel yukky, so it would take more cooking time and creativity I guess to replace the carbs. Any advice is appreciated. You guys are all so smart about this stuff! Amy

For the last few days I have been feeling strange before and after meals -- kind of like a feeling that I am very hypoglycemic, with nausea, clamminess, lightheadedness and a little dizziness. My heart rate remains normal (I am on a beta blocker), and I checked my BP once with a home monitor and it was unaffected. Any ideas? The obvious one is actual hypoglycemia, but I hate to make yet ANOTHER trip to the doctor. I have always had blood sugar on the low side of normal or slightly below normal when I do any blood tests. But I never have really had symptoms until now. After I eat, I feel a little better, but I still feel very hungry (even after a huge meal) and have a strange craving for sugar. Amy

I remember reading in a previous post that there's a pseudopheochromocytoma-type disorder being researched that also involved high catecholamine levels/high plasma metanephrine levels. If you look back you may be able to find it -- I think it was a couple weeks ago. I am not sure if "extremely high" is possible with this disorder or not. I do know that pheochromocytoma is pretty rare -- 1 in a 100,000. So that's not a very good chance of having it. Also, people who have chronic anxiety have high metanephrine levels, I have read, and POTS patients have high catecholamine output (product of adrenal glands).

For the bowel trouble, try the BRAT diet -- bananas, rice, applesauce, toast. It is easy on the digestive system. You can also try yogurt (unless you are lactose intolerant), avoiding fatty foods, and watermelon (good for hydration). As for the spasms, stay hydrated as much as possible and try to be aware of the tension in your muscles. When you notice you are tensing, sit or lie down and try to relax a bit, even for a few minutes. Tachycardia, for me, responds best to exercise (makes it worse initially but better over time), meditation (10 minutes a day of trying to think about nothing) and not standing for long periods of time. I am sending you positive energy to deal with your family tragedy. Good luck. Amy

I take 25 mg 2x/day -- morning and late afternoon. Any more would be too much; any less and I get tachycardia and BP is a little high. That sounds like a lot of antidepressants -- I know some docs like to combine more than one, but shouldn't the doses be a little lower then? Amy

Sue, I hope your EMG went well ... I just wanted to say I had one done a few months ago and it was a little uncomfortable in that they jab you with a very thin needle in various places (hands, ankles, feet, legs, back) to see if the nerves/muscles are working properly. Mine was normal, even though I was convinced something had to be wrong because my muscles were growing so weak and were twitching. Sounds like I am not the only POTS patient to think I had a problem with my muscles/nerves. The weakness is probably my worst symptom behind shortness of breath. I don't even notice the tachycardia anymore! Hope all went well; please share your experience after your test. Amy

Jessica, This sounds too high for treating POTS. I would think 100 mg 1x or 2x/day would be more appropriate. I take metoprolol 25 mg 2x/day. For someone who is being treated with metoprolol for high BP, that person would probably take at least 50 mg 2x/day or more. I also know some people take 12.5 mg 2x/day, but this didn't cut it for me. If you have very low BP -- like 90/60 or lower -- I would think a BB would be a bad idea. But since you are on midodrine, maybe that would counteract enough ... what is your BP running since you have been on this? I think the BB lowers my BP about 10-15 units systolic and 5-10 diastolic, if that helps you get an idea of how you might be affected by a low-dose BB. Amy

Sue, This is way too similar to my life. My black lab can open our refrigerator with his paw and eat from it. He also has eaten everything from Thanksgiving leftovers (cursed for days by my husband) to flour (messy carpets!) to birdseed (this was definitely the grossest -- it came out looking exactly as it did going in, and he wasn't vomiting it, if you know what I mean) and yes, birthday cake. He is the most intelligent dog I have ever encountered, but incredibly stupid because he would eat himself to the death. I have had to take him to the doggie hospital twice to have his stomach pumped because he broke into the garage and ate 5 pounds of dog food. He finishes his meals in less than 30 seconds. It's like every meal he is trying to set a world record. I have heard labs are famous for this. We have become accustomed to never leaving food out -- anywhere. Our trash is in a wooden bin with a lid he can't open; no food can sit on the counters. My infant daughter can't even eat a teething biscuit without him stealing it. He is so out of control, but he is the sweetest dog and we love him. He loves my daughter and he makes her laugh daily. We tried a behavioral expert and even she didn't have many ideas. We weren't ambitious enough to follow her advice, so we live with his mischief. I am going to go hug my pups! Amy

I am leaving tomorrow for a trip to Colorado. I am just a little nervous a) because I will be in a cabin in the mountains, with no civilization within 20 minutes (meaning no hospital in the event of a POTS emergency!) and I don't know how/if the elevation will affect me in a good, bad or other way. Wish me luck, and if anyone has any info/ideas for me, let me know. I don't have to worry about low BP, so that's not an issue. I am taking the train -- a 16-hour ride, but I hate to fly so it's worth it for me. Hopefully my 7-month-old will cooperate. I wish I had a sleeper car but we couldn't afford it -- it would have cost $900 round trip for me, my husband and baby! Also, if anyone is taking Lexapro or Celexa, I have been having very bad fatigue lately. I didn't notice it the first week I starting taking it, but now I am on week 4 and it's pretty bad. Does it tend to get better?

I don't think this is a UTI. I have had at least five of them and never got pain like that. I even had a kidney infection once and had mild pain up near my kidneys in my back, but not lower. Sounds like sciatic nerve pain. Does it feel nervy in nature? Pressing on it and it hurting more makes me think this. I am a certified massage therapist, and although I cannot make a diagnosis, I have several clients who describe the pain the same way as you do -- always there and burning, plus occasional bouts of it shooting down the leg. Could also be sacroiliitis, which is inflammation of the sacral jt. Massage does help sciatic pain & sacroiliitis not by direct pressure in that area, but by loosening up nearby muscles and tendons that may be tight and are compressing the nerve. Stretching will help. Exercise and moving will help, and sitting/lying down will make it worse. Strengthening the muscles in these areas is helpful. I know, none of this is easy with POTS, but needs to happen or else you will continue to have problems. Good luck! Amy

I don't get a rise in BP when standing, but I don't get a drop either. Well, I take that back -- if my BP is running high when sitting, it will sometimes drop a little when I stand, but it doesn't bottom out or anything. I was told by my doctor that the BP changes with sitting/standing/etc. are a sign of autonomic dysfunction, whether they're high or low. The idea is that the regulation system of your body is screwed up, so it can't maintain things during normal changes in body position. So if there's a significant change, it's probably this sort of dysfunction. Amy

I agree with Merrill. 108/68 is not low at all. It is normal. Low would be 90/55 and below. What does your BP do when you're just sitting? Is it the same or is it high? Maybe you don't have POTS and your BP has nothing to do with what's wrong with you. Hope you get some answers soon. It's certainly not easy to get much better if you don't even know what's wrong. Amy

I am so glad you are getting back to your normal life. Don't let this illness bring you down as it has for so many. The best thing you can do for yourself is keep doing what you have been doing; just be sure to rest enough, stay active enough and eat/hydrate well. Sounds like the meds are helping a lot too. That's just great! Amy

I am taking Lexapro, which has helped a bit with the anxiety feelings. However, I hate the idea of being on an antidepressant. For six months I dealt with these feelings without this drug. I found progressive relaxation techniques, yoga, exercise and meditation to be slightly helpful. And staying busy with something -- reading, hobbies, etc. There seems to be the anxiety that's all physical -- just your body running on overdrive -- then the mental anxiety that is a reaction to all the physical stuff and how it wears you down. Try to separate the two. You have control over the mental stuff and may have even a little control over the physical. Try to remember you are not going to die from this and that your body is just a little wacky right now. If you really feel like you're still anxious after trying to go on without meds, maybe you should consider antidepressants or antianxiety pills (Valium, Klonopin). But I would NOT just take some pain meds to relieve the anxiety. They are often addictive. Always talk to a doctor first before taking anything. Good luck, Amy

Hi Jessica, I am like you in that I get more energy as the day goes on. At least I think that's what you are saying. I don't have any real original ideas for you but do think having a glass of milk at night really does help me, as does doing any exercise at least four hours before I go to sleep. Exercise tends to energize me. I also do not believe in naps (I know everyone here at potsplace will curse me for that one!). I think they tend to throw people off of their natural sleep patterns. If you must nap, try 20-minute ones. Or try doing yoga for 20 minutes instead of the nap. I know that may sound ambitious when you are tired, but it really helps me. I think the key is to stay awake at least 15 hours during the day and sleep about 7-8 at night. If you don't nap, you will be plenty tired. I know you like to do yoga before bed. Just try to do the more relaxing poses, not anything that builds strength or energizes. It's probably keeping you up. Amy