Gena

I called Claritin and their cust. rep. said the only contraindications are for kidney or liver disease. It's a non-drowsy antihistamine, over the counter product that has a main ingredient of loratadine. I read one post on here from someone who said it made there heart race each time they took it. So now I'm afraid! Has anyone had any good or bad experiences with OTC Claritin? What other allergy meds (prefer OTC) has anyone used with good results? My allergies seem to have gotten worse tenfold since getting POTS symptoms a few months ago. I constantly have a runny nose. Need help. Thanks.

Thank you all for those responses. I was hoping to find a magic solution to stopping tachycardia, but I guess there's not one that does it for everyone! It sounds like some people do take a BB only on an as needed basis. I might try talking to my doctor about that possibility. Blackwolf, you mentioned biofeedback. What types of methods do you use and where did you learn them? I went to my first session with a therapist last week, but I was not impressed with her knowledge, equipment or methods. She is the only person in my town that offers it. She's new at it and still learning. There used to be a great biofeedback specialist in my town, but he's retired. Are there any good CDs/books on biofeedback that I could get to practice on my own? Thanks again everyone for your help!

I'm in the panhandle of Florida and we're fairing much better than the folks in Tampa, Orlando, Jacksonville, etc. have. Just some light rain and gusts so far. Apparently everyone Tallahassee and eastward is getting the brunt. Thanks for checking! And hang in there Jessica!

My heart goes out to you. I will say many prayers for you tonight. I am so sorry to hear you had such a terrible, scary time. Have faith that things will improve. Try to get someone to let you rest and have your family take some of the responsibility of this move off of you. You need time to heal. I am sure you will recover, hang in their and think positive thoughts. I know it's so easy to get pulled down in the pits and sometimes it's hard to climb out. I find that reading an uplifiting book or watching a funny movie and meditating really helps me. I hope you get the support from your family to help you through this difficult time. Many hugs and prayers!!

I tried taking a calcium channel blocker for about 5 days, very low dosage, but my BP would get too low while sleeping and it made me feel really weak and lethargic in the mornings. My doctor didn't want me to put me on a BB for fear of my HR getting too low. It gets in the 40s while I'm sleeping sometimes. Does your heartrate get too low from the BB? Do you actually take a BB when you're having a tachycardia episode? I thought your were supposed to take them at the same time every day and not just for when you're having symptoms.

I am often plagued with major tachycardia episodes at night when getting out of bed or waking up from a nightmare. Does anyone have any tips for slowing your heart rate down once you're in the middle of a full blown attack? My HR is normally in the 50s, but when I have a bad episode it can get into the 140s which causes really bad chest pains and shortness of breath. I've listed some things below that I have tried...does anyone have any other tricks they use that I'm not aware of? I try not to panic as I know that just makes things worse. But every time I start to think, Oh God, this is it..this is the big one and I won't make it! I've tried slow, steady breathing exercises, which work some times, but not when my heart is racing out of control. At first, focusing on my breath just seems to make my HR worse. I try visualization of peaceful, relaxing places. I try talking out loud. (Sometimes this helps, but I can't talk to much, because I start to feel oxygen deprived). Distractions like turning on the TV sometimes help. Someone told me to cough several times, but this doesn't seem to help. Any ther suggestions??

That's a great web site. I'm going to distribute the press release they have to my local media and put up a poster at work!

I've only had POTS for a couple of months, but I've had terrible headaches everyday for about the last month. Does anyone else have or had this problem? I'm not taking Florinef (so this isn't the cause). But I do take licorice root instead, so maybe that's it? I can't figure out if they're tension headaches, vascular or both? Is it related to fluctuations in blood pressure or eating? I do find that they get worse after I eat. I wake up with no headache but after a couple of hours it hits me and then stays with me the rest of the day (the level of pain fluctuates, but it remains there). Advil normally doesn't do anything. The headaches are often more debilitating than any of my other POTS symptoms. When the headache goes away I feel like a new person.

katherine --I don't remember the doses they were on. However, I do remember reading that that once their doctors weaned them off, their cardiac output did return to normal.

I have celiac sprue and mutliple food allergies. When it comes to POTS and eating, I find that refined sugars are the worst for me. If you want to get really specific, the Great Smokies Diagnostic Lab has a very reliable food allergy test (via blood analysis). In order to get it done, you have to get your doctor to call them to order the testing kit. Telephone: (800)522-4762 . You then get your blood drawn at your doctor's office or at any lab and send the kit back to Great Smokies Lab for analysis. They'll send you a report. Here's an excerpt from their website... gsdl.com Using state-of-the-art ELISA technology, the Comprehensive Antibody Assessment identifies hypersensitivities to over 120 of the most commonly encountered types of food and environmental substances. Test results come with a personalized treatment plan for food allergy called True Relief?, a medically advanced rotation diet guide. This innovative and flexible guide clearly explains the principles behind food allergies, rotation diet, elimination and reintroduction of foods, and allows patients to see at a glance what their problem foods and dietary choices are. The Comprehensive Antibody Assessment is also valuable as a preventive measure for patients who are not currently experiencing the overt symptoms of an allergic reaction. It can reveal unsuspected food allergies which, if ignored, may place cumulative stress on the immune system over time?setting the stage for the development of more severe illness in the future.

I am not on a beta blocker, but for what it's worth, I've read several posts on different forums by long-term beta blocker users whose cardiac output got too low because they had been on it for so long. Their doctors had to wean them off of it. On the other hand, I know a co-worker with POTS/MVP who has been on a low dose BB for 20 years without any problems at all!

I have noticed on many previous posts that a lot of people have gluten sensitivity/intolerance. I wonder how many people realize that this is condition, (if it's been diagnosed as celiac sprue), is also an autoimmune disorder. Just wanted to point that out for survey purposes!

I sent you an email to your personal email adress. But I also wanted to send some birthday smiles your way. Sounds like you could use a few. May you get lots of Warm Hugs and Many Blessings today and every day!

I can definitely relate to your shin pain problems. I just came down with these symtpoms about 2 months ago, so I have a long road ahead to recovery I'm sure. But I have had pain in and around my shins for several years, mostly after being on my feet for a while. I am also underweight and have lost 5 more pounds. I eat a lot and my body burns it off so fast. It's frustrating And I know exactly what you mean about the breathing!! I didn't know anyone else felt that way too. I told my doctor that some days it's like my body has forgotten how to breathe. He looked at me like I was nuts! I have to force myself to breathe in and out and it doesn't feel natural at all. I have this breathing problem for short periods on a daily basiss, but I feel this way for many hours after an episode of tachycardia. It seems like the more I focus on it, the worse it gets. However, when I do Yoga, somehow I forget all about the breathing problems and my body gets back in sync for a little while. It's really amazing. I am so sorry to hear about your mom and your dad. Those kinds of stressors really take a lot out of a person. I've gone through some similar situations with my own family. I'm only 36 and I feel like I've been through enough stress for several lifetimes! Stay focused on the positive things as much as possible so your body can heal. God bless.

Hi there. Funny you should ask that. I was just noticing how especially tender one of the glands in my neck is this morning. I have had swollen glands in my neck and groin since about 4 years ago when I was diagnosed with celiac (gluten intolerance). I also have fibromyalgia. I was just dx'd with POTS this summer. My doctors over the years could never really expalin my swollen glands. I've had a CT scan on my neck just to make sure there wasn't anything cancerous going on. I've gotten so many explanations from different doctors regarding the glands... Here are a few that sound plausible: a reaction to the many food sensitivities I have/ and/or a constant viral state that my body might be in (Epstein Barr?) and/or a continuous autoimmune response. Anyway, you're not alone on that. I've read many posts from others with swollen glands. I just monitor mine to make sure there aren't any drastic changes in them. I was considering getting one in my neck biopsied when I go to Mayo next month. Hope this helps. And yes, having this forum for support is a true blessing!

Thanks everyone for the replies. Yes it's certainly a mixed bag of responses. I did try drinking some caffeine and here's the result of my "trial study". I had one cup of green tea mid-morning with just a teaspoon of honey and then another cup mid-afternoon. My blood pressure was actually in the normal range by the afternoon up through the time I went to bed. This was a first for me, as my BP is always quite low. I was a little tachy when I awoke in the middle of the night to go to the bathroom, although that is normal for me. I didn't check my BP in the middle of the night to see if the caffeine was continuing to keep it normal or not. Will try that in the next "study". I'm beginning to feel like a lab rat! Anyway, my body seemed to tolerate it okay, so I'll try it again. Thanks!

I noticed my floaters, especially in my left eye about two years ago before my sypmtoms started. I have always had perfect eyesight and I knew these floaters didn't just appear out of thin air without a reason, but i could never figure out why. I was just recently dxd with POTS and never knew there might be some kind of link between dysautonomia symptoms and vitreous floaters until I started seeing several posts on this forum about them. I don't know if it's coincidince or not but many of us seem to have the floaters. I've gotten used to mine and it's just one more thing I have to "live with!"

Focus on positive thoughts, relaxing images and know that God will take care of you. Sometimes I force myself to laugh out loud or smile when I'm feeling down or anxious. It makes a world of difference. You are in my prayers. May peace and joy be yours.

Thanks everyone for the responses, info and support. I guess it's comforting to know that I'm not the only one dealing with this stuff in the middle of the night! I just wonder if it will be like this forever or if I'll eventually be able to get up out of bed to go to the bathroom without brining on a tachycardia episode. What's odd is that I can sit at my office desk for a couple of hours during the day and then get up without a problem, or even take an hour nap and get up without any episodes(sometimes slight dizziness but that's it). I guess the blood has longer to pool in my legs when I'm sleeping at night. Oh well, I am determined to keep my spirits up and deal with this head on. It sure helps to have this forum!

I have similar symptoms as you RunnerGirl, but I was just dx'd so I am still doing med-free regimen. Although one doc just prescribed a low dose calcium channel blocker which I'm going to start today. If that doesn't work then I will try an SSRI like Lexapro. I was wondering though, what tests are done to determine if you are hyperadrenergic (producing excess adrenaline)? I think that's me, but I'm not sure. My HR and BP are normally quite low (HR during day in 50s, in 40s while sleeping --with periodic espisodes of 70-80s and higher HR) (BP is often 80s over 50s).

I have to ask if anyone else gets bad tachycardia when you have to get up in the middle of the night to use the bathroom or waking up from a nightmare? My BP and HR get very low while I sleep, but they are manageable during the day (although still low). After I've been a asleep a few hours my bladder and kidney ache to use the bathroom, but I'm scared to death to get up because any time i do, my heart races wildly and I get dizzy with chest pain. My husband has to roll me in a wheel chair to the bathroom. We joke about it, but it's getting really old because it disrupts our sleep. I drink tons of fluids during the day but try not to drink anything past 7pm to reduce the # of trips to bathroom. Any other ideas? Also --Last night I had a bad dream and woke up with severe tachycardia, but I hadn't even tried to sit up or anything. I was lying perfectly still in bed with my heart going a mile a minute. This gets so confusing and frustrating. Thanks!

I think it's great that you've gotten such good results from the chiro. I only see a massage therapist. I used to see a chiro when I lived in Charlotte, NC before all of my symptoms started. He worked wonders on my spine. My vertebrae in my neck are almost straight too, according to the X-rays. He used a very gentle mechanism for manipulating me. I'm not sure what he used, but he said only about 100 chiros in the country were trained in that method at the time. Anyway, I moved to Florida and haven't found a chiro that's worth a hoot in my area. I'd give anything to be able to go to the one in Charlotte again, though. What type of manipulation and therapy does your chiro use. Is it manual adjustments or what?

Thanks everyone for your responses. I wanted to try midodrine in combo with the Cardizem, but when I spoke with nurse at the center in Birmingham she said they absolutely do not write RX for midodrine. She said they take most of their patients off of it if they are already on it when they become patients there. She didn't give me a straight answer as to why. I may start taking the Cardizem tonight, so I hope it goes well!

I was just dx'd with POTs. I've been dealing with full blown symptoms since June of this year. I went to see a specialist in Birmingham at the Mitral Valve Prolapse and Dysautonomia center. She gave me a rX for Cardizem, which is a calcium channel blocker. I've noticed most people on the forum have tried beta blockers. My doc didn't want to put me on the BB though because my heart rate and BP are so low. I wasnt' going to get the RX filled because I'm scared of the side effects and how my body might respond. But after the awful night I had last night (bad tachycardia from a nightmare, shortness of breath and chest pain) I am desperate to find something that will alleviate these episodes. Anyone have good or bad experiences with this type of drug? Did it lower your heart rate too much? Thanks!

Sorry you couldn't sleep, but sometimes that's when we have our best creative thoughts. I think it's a great idea. Maybe we could use some of the personal stories posted on this forum (with permission of course) to include in an article in the packet. Nothing gets across the concept of dealing with dysautonomia better than a personal story. In addition we could include medical facts, most current research findings and statistics along with website links for more info. I do public relations/media coordination for a hospice organization in Florida and Alabama. I would be happy to help out with this in my spare time. The first thing I would like to know is what the other dysautonomia, POTS, etc. foundations and agencies may already be sending to the media. Anyway, if there's interest out there or if anyone has info, I'd be interested in pursuing this. (Like I need one more thing to do in my life!