seaboardbc

I took lopressor for awhile and it didn't help me. Now I take Pindolol (5 mg in the am and 5 mg late afternoon) and it has worked the best for me so far. I know I was on some others, but can't remember which ones. My cardiologist told me that she's had a lot of success with Pindolol for her female patients (I don't know what the correlation is though). Marg, as far as POTS and high blood pressure goes...I do have POTS, but when I'm sitting or lying my blood pressure is borderline high to high(for this reason I don't take florinef), but as soon as I stand up it drops to around 100/60 or a little lower. I have never fainted but since the spread is always 30 or more I become dizzy and usually experience tachycardia. I also take a calcium channel blocker (cardizem) which doesn't usually work for POTS patients. At least in my case, as far as the meds go, it has taken a lot of experimentation. And then just when something seems to be working, it seems like it all quits working so good and my meds need to be adjusted again. Bren

Michelle I also tried to ignore all of my newly developed skin sensitivites. Then, this Fall I had such a severe reaction to hypo-allergetic EKG pads that I ended up in the ER (this was only the 3rd time that I had a reaction to an adhesive, and none as severe, and there were times in between that I wore bandages with no problem). After 5 hours of trying everything he could to stop the reaction, the ER doctor told me he had no choice, but to give me an EPI shot. Well, that stopped the reaction, but I thought that I was going to have a heart attack. My HR was 145 when I went in and about 115 (lying down) when he gave me the shot. Well, when my cardiologist saw the ER records, she agreed that the ER doctor had no choice but to give me an EPI shot. She said that she couldn't have me getting EPI shots on a regular basis and that I needed to have skin patch testing. Well, I am allergic to every adhesive or ingredient that goes into an adhesive. I am so allergic that my dermatologist had me cancel a scheduled sleep study because of all of the adhesives that are used (she's afraid it could be another EPI night). So now the sleep clinic is trying to figure out how they can adhere everything to me. I am also very allergic to Thimerosal, which is a preservative used in vaccines (you might want to read my other post about Thimerosal). I'm not sure if it's used as a preservative in contrast dyes, but you might want to check. The other things that I tested positive to were: Formaldehyde (Quaternium-15) and Rosins (Colophony). All of my reactions were so severe that she told me these allergies need to be listed on my Medic Alert bracelet and all of my doctors and even my dentist need to be made aware of them because besides being used in adhesives some are also used in topical medications. I am also having a blood test tomorrow for allergies to latex (because it doesn't show up well in patch testing and with my other allergies she thinks that I'm probably allergic to latex also). The past couple of years I has some very odd unexplainable rashes. Prior to that, (for almost 40 years) I could put just about anything on my skin without a reaction. Now, I can't even wear a bandage. I don't know what happened this Fall that put me other the edge. I have an appointment with Dr. Grubb in a couple of weeks and I'm going to ask him about it. My dermatologist said that she would do some research on POTS and see what she can find. So, to answer your question "How do we know the difference between side effets we can manage and allergic reactions we should avoid?" I don't know how to answer your question. But maybe if you have had enough rashes or reactions to things, you might want to be tested. The patch testing isn't that bad. You can't shower (or sweat) for 48 hours after the patches are applied. After 48 hours the patches are removed and the initial results are recorded, and then you can shower, but you can't use soap where the patches were applied. Then after another 48 hours the final results are recorded and the testing is complete. It was pretty painful for me the first 48 hours because I had such severe reactions, but I guess everyone is different. Also, I would suggest being tested in the winter. I could never have tolerated it in the summer. If you would like to read more about contact allergies go to www.truetest.com. I hope that I haven't confused you (or anyone else) more than we are already confused. Take CAre Bren

Dan I always look forward to your replies to my posts. Although, I'm not anywhere near as knowledgeable as you are on this subject, I do have tons of good vibes to send your way, so I'll keep thinking positive thoughts for you on my end. Bren

Justme- You are awesome!!! Fortunately, I have a husband as wonderful as you, but sometimes I forget to tell him. On my "good days", I tell him that I think it's worse being the healthly spouse married to the chronically ill spouse. And then he tells me all of the wonderful things he gets from our relationship. But, on my "not so good days", I tell him that he just doesn't understand. And then he's quiet. You made me realize how much he does understand and because he understands that is exactly why he is quiet. I know that he always understands (or does his best to understand), but on my "not so good days", I seem to forget. After reading your post, I'm going to try my hardest to never again tell him that he doesn't understand. Thanks for opening my eyes. Now, I'm going to go tell him that I think he's wonderful. Bren PS I know I sort of got off on a tangent. Yes, I would love to have doctors involved in this forum. Whenever I go to a new doctor, I tell them about this site and ndrf.org.

Does anyone know if Thimerosal has ever been linked to POTS? "Thimerosal is a mercury-containing organic compound (an organomercurial). Since the 1930s, it has been widely used as a preservative in a number of biological and drug products, including many vaccines, to help prevent potentially life threatening contamination with harmful microbes. Over the past several years, because of an increasing awareness of the theoretical potential for neurotoxicity of even low levels of organomercurials and because of the increased number of thimerosal containing vaccines that have been added to the infant immunization schedule, concerns about the use of thimerosal in vaccines and other products have been raised. Indeed, because of these concerns, the Food and Drug Administration has worked with, and continues to work with, vaccine manufacturers to reduce or eliminate thimerosal from vaccines." Bren

Has anyone else developed allergies to adhesives (or other skin allergies) since being diagnosed with POTS? Bren

Here's a copy of a post I wrote on another forum. I apologize to everyone who has already read it. I just don't know any way to say it better than I said it there. "Gosh, I don't know where to start. I was diagnosed with POTS almost 2 years ago. I have had periods of time when I think that I will die because of tachycardia and angina. Then there are times that I'm dancing around singing "I'm cured" (those times are few and far between but they give me an incredible amount of hope). When I was finally diagnosed with POTS I was relieved just to be able to put a name to what was going on with my body. I quickly found out that a diagnosis is only that and that with this condition treatment is hit or miss. Prior to developing POTS I was a person that got the most out of every minute of life and even if my body didn't feel like going my mind could do a mind over matter thing. I was like the energizer bunny. And then one day, no matter what I tried I just couldn't go anymore. In the beginning there were periods of time that I thought, "Why me? I have so much to offer the world." And then I would think, if this is how the rest of my life is going to be, please make it short. Then one day I decided that the one thing I won't let this disease take away from me is my passion for life (and believe me it can be a constant struggle). Here's what's helped me most: 1. My initial visit with Dr. Grubb as well as my follow-up visits. 2. I have a cardiologist and a rheumatologist in Minneapolis that are my primary care doctors. They work together with Dr. Grubb. They are more knowledgeable than most about POTS and they are willing to learn. I actually think that they are more like scientists than doctors. I think that they are the most important part of the equation. I know it's hard when you feel like crap to look for a doctor that understands this illness, but in the long run it makes all of the difference. 3. I gave up friends who didn't try to understand the limitations of my condition. (I don't think that they were really friends because the ones that I've kept are wonderful!) 4. I made a new friend who has POTS (hey Steph), because no matter how wonderful my husband and family and friends are sometimes they just still don't understand. I don't fault them, I don't even inderstand this condition. 5. I figured out how to get the most out of my "new life". I went from a very successful career to lying on the couch watching life pass me by. Now,I'm back in school part-time working on my masters. I might be 100 before I get it, but it's doing wonders for my self esteem. 6. I believe that some day there will be a cure for POTS. It might not be in my lifetime, but that's not stopping me from looking for answers, because if I don't keep looking than all of this will be in vain. 7. I tell my doctors that I have a short memory. I do my best to let my good days erase all of my memories of my bad days. 8. I've kept my sense of humor. For years I've had a poster in my office that says "Laughter is the best medicine. Unless you're really sick. Then you should call 911." I can't even tell you how many times a day that I look at it. I'm not going to pretend or tell you that I don't get depressed. I do, but it's short lived because I tell myself, "Now, how will being depressed help the situation." My answer is always the same, "It won't." So then I channel that energy into something that might help. Whoa, this is long. I'm not really as philosophical or spirtual as I've come across in this post. I'm just very competive and I'm doing my best to not let POTS take away my zest for life." Hope this post gives you some inspiration. Bren

I have the same problem with exercise and my heart rate. My cardiologist sent me to cardiac rehab. Some days I would be normal and other days my HR and BP would go so wacko I was afraid that they were going to admit me. A few rules they set for me were: I couldn't exercise if I came in with a HR above 140, I had to stop if my HR went above 185 and I couldn't use the recumbent exercise bike at all because that really set me out of control. I never "graduated" from rehab because there was no rhyme or reason to how I could perform, so I sort of have an open invite which I'm thinking about using. The other day I went on the treadmill and felt fine until I got off. Then I was the dizziest that I have ever been and it scared me to death because it lasted well over an hour. So I think that I need to go back to supervised exercise.

I sleep horrible. I wake up several times a night. Some nights I can fall asleep in less than a minute and other nightss even though I'm exhausted I can't fall alseep. And then I'll go through periods when all I can do is sleep. I had a sleep study done about 8 years ago and was diagnosed with narcolepsy and sleep apnea. I had surgery for my sleep apnea and I take meds for the narcolepsy. But now I'm having another sleep study on 1/29 to see if I've developed sleep apnea again. I guess the surgery has a high failure rate. You might want to consider a sleep study. I can't remember the number, but my sleep doctor told me the percentage of people that have sleep apnea and it was very high.

My symptoms were definately worse during my period. Now I'm on the pill 365 days ayear so that I never get my period. This has helped me a lot.

I also experienced the same thing when I first developed POTS. It has improved and it doesn't happen as frequently anymore. I did talk to the doctor about it and he didn't seem too concerned. Although, it was quite disturbing to me. I'm sorry that I don't have any solutions for you.

Try drinking real rootbeer. Not the kind with artificial flavoring. Someone told me about this when I pregnant and it worked for me. I suggested this once before to someone who has POTS and it worked for them. Hope it works for you, too.