sbtalbott

Hi all- I have a strange question for you all. I am 47 years old, was diagnosed with POTS/EDS about 7 years ago, but have been symptomatic since my teens. One thing that I've never really associated with my disease but now wonder if it may be part of the whole complex is a strange rash I've always gotten when I stay in the sun for any extended amount of time. My family (Mother, sisters, grandparents) were all olive complexion and could tan easily. I could have been a "ginger". Very pale skin, but dark hair. When I'm out in the sun for any extended time, I get a rash on my chest, thighs, and arms that resemble poison ivy, itches and lasts for 2-3 days. My family used to joke that I was "allergic" to the sun. It doesn't matter if I use sun screen or not (I thought I was allergic to PABA and would only use PABA free...still get it). My 17 year old daughter was recently diagnosed with POTS/EDS also, and also gets the same rash that I do in the sun. She also has a pale complexion with dark hair and blue eyes (Her dad is of Irish decent). Anyone else get these strange rashes? It doesn't seem to relate to the heat of things. I get the rash in cool weather if the area is exposed to the sun (like forearms). Thanks for your input- Kaye

Hi- I have a friend who has a chamber in her home (she had a bad stroke a couple of years ago with lots of complications. Her family purchased a chamber for her as long term it was going to be less expensive than all the treatments her MD recommended. The chamber is about $20,000 to purchase), and she has let me use it a couple of times when my symptoms are pretty bad. I do notice a difference, and when I spoke to my MD about it, he felt it made a lot of sense. Many of us POTSY's wear compression stockings and/or take medication for vasoconstriction to help with symptoms as well as blood pooling. In the hyperbolic chamber, you're in an enviornment of increased oxygenation and pressure. For me, when I get very symptomatic, I have a lot of brain fog, confusion, slurred/slow speech as well as the normal increase in dizziness. When I've used the chamber during those times, the symptoms tend to clear up somewhat, and remain that way for a day or so afterwards. I don't think it's a cure, and it is very expensive (I'm blessed to have one near by that doesn't cost me anything to use), but it has been helpful to me in coping with symptoms when I get to the non-functional place. Hope this helps. Kaye

Thanks for the encouraging words. I was really struggling for a few days and very frustrated. I hate having my kids ask "Is this a good day Mom?" or not being able to run around with them. Friends of ours had a memorial day cook-out and hoe down (square dancing). I had been feeling very symptomatic all day, but really wanted to go. We no sooner got there before I knew I was not going to be able to cope. I couldn't stand up, was so dizzy and light headed. My speech gets very impaired when I'm very symptomatic. (The first time that happened I was sure I was having a stroke. Slurred speech, difficulty getting words out.) My husband brought me home and my kids stayed to enjoy the dance. I cried all the way home in the car. I'm too young to act like an invalid. Kristen, good suggestion about the chemicals. We raise only organic produce and pastured poultry, so we don't use pesticides and that sort of thing. Intellectually, I know pushing things make symptoms worse, but I feel like I have so much that I want to get done that I need to push on days I'm doing better...that thought process always comes back to bite me. Another question for you guys, I alternate between severe insomnia and then periods I'm exhausted all the time. I hate taking medication and really don't want to go the sleeping pill or antianxiety medication route. Valerian and cammomile seem to do absolutely nothing for the insomnia. Any suggestions?

Hi- I lurk from time to time on this board, and just felt the need to vent. I was diagnosed with POTS in February 2007 after being bedbound for almost 3 months with severe dizziness, migranes and other neuro type symptoms. After many months of changing around medications/ etc, it appeared I was somewhat stable (though no where near where I was prior to onset), and I was functional. My new baseline appeared to be occasional dizziness, arrhythmia, some GI upset, and fatigue. Suddenly, I'm having day after day of extreme fatique, nausea, gastric issues, dizziness and I guess what everyone calls brain fog...I feel very flighty, can't think, have trouble articulating my thoughts, difficulty with speech and even some visual disturbances (blurry vision, diffiuclty focusing). I take flurinef, midodrine and kerlone. My midodrine is 5 times/day, 10 mg each dose. Kerlone is 10 mg at night and flurinef is 2.5mg in the AM. I am also having runs of extreme tachycardia (>150) alternating with bradycardia down in the 40's. When I'm having bradycardia, I hold my PM dose of Kerlone (beta-blocker). I'm an RN. but am not currently working except to teach a high school chemistry class 1 day/week (I also have a chemistry degree). I don't understand this disease at all. My MD keeps saying that things should resolve, but then I find that it gets worse. I can't pin point anything that could have caused this exaccerbation. I have 3 children at home, homeschool, and am so frustrated about my inablilty to do my daily chores. We have a small farm, and I have gotten to the point that I have to rely on my 12 and 16 year old to do all animal chores, and have yet to get any of the garden in. I spent all yesterday in bed as I could barely stand up. Is my MD just being optimistic, or will this go on for the rest of my life? When I look back, I actually started being symptomatic in my late teens, but was told I had MVP. I was functional then, but would still have days I had palpatations all day, chest pain, etc. I just pushed myself harder and told myself I was just lazy. I'm now 42, and I can't seem to push anymore. Is this now my life???? I hate being so wimpy and feel so worthless. I'm an overachiever at heart, and I hate being dependent. Thanks for those of you who read this tirade. I just needed some space to vent, but guess I should just really praise GOD for being able to do anything. Kaye

I also have had speech problems. Actually, it was one of my first POTS symptoms in January of this year. I thought I was having a stroke. My speech became slurred and slow. I had severe pain on one side of my head, and tingling on one side of my face. It was intermittent and would resolve after about 5- 10 minutes, but return almost hourly. The MD's initially diagnosed me with status migrinosis (unending migrane), then said I had too much stress at home and perhaps this was stress related. It wasn't until I saw a MD who knows about POTS and had my tilt table test (where I also presented these neuro symptoms) that I was properly diagnosed. My cardiologist says it's decreased perfusion to the brain and he's seen it many times with POTS. Since my bp and pulse have been stabalized somewhat with meds, I only get these symptoms when I either forget to take my meds or am really tired and feeling POTSY. So sorry about your family. I do think stress plays a role in how symptomatic you are at times. All that adrenoline. Kaye

Thanks for all the encouraging words. It gets so frustrating sometimes. I feel like everything is getting away from me and my body just refuses to coorporate with what needs to be done! I agree with you guys, I probably over did it, but I didn't feel like it at the time. It is so hard discerning where my limits are. I live in an 18th century house that always needs something worked on, and in the past it was nothing for me to repair plaster, replace flooring, tear out a wall, paint or help my husband with the number of ongoing projects. Some days I'm too exhausted to attend Bible Study or prepare dinner for the family....so frustrating. Thanks again, and I enjoy reading the posts on the board. Kaye

I was Diagnosed with POTS in January, and after being pretty much bedbound for much of January and February, have slowly started to have some normalacy back in my life. I have started back to my teaching job on Tuesdays, and was actually starting to do more around the house like house keeping and getting out in the garden then BAM! Last Thursday it is like a train hit me. Wednesday I had worked some outside with the kids. My oldest son and I cut some grass, he with the push mower, me on the riding mower (we have 4 acres). I was tired when all was said and done, but since that point I have been so symptomatic. Chest pain, shortness of breath, nausea, dizziness, GI upset, shakiness, extreme fatique. This is now a week later and it doesn't seem to be letting up. Did I push too hard, or is this a twist of POTS? I have called my cardiologist, and will be seeing him Friday (I also have an aortic fistula....newly discovered since Jan) just to make sure we don't have something else going on. This is really driving me nuts. I've always been very healthy, active, height/weight appropriate. Heck, I was taking a kickboxing class last fall before all this hit. I just can't believe how little I can do now. Am I just being wimpy? Kaye

Hi Everyone- I am new to this forum, and was curious about others experience with POTS. I have been symptomatic off and on, but undiagnosed since I was 19 (I am now 41). Originally, I was diagnosed with MVP back in the day when every young woman with palpitations was told they had MVP. I actully just have mitral regurgitation. Anyway, I had a severe exaccerbation of POTS in January of this year, and was finally appropriately diagnosed by Tilt Table Test after being almost bedbound for 2 months. I am currently taking Flurinef each morning, Middodine 4x/day and Kerlone at night (to help with the severe palpitations...mostly PVC's and PAC's). I am just now getting somewhat back to whatever normal is, but continue to have daily symptoms of POTS (dizziness, nausea, poor appetite). I have lost 30+ lbs since January (Hey, just in time for bathing suit season! HA). I have 3 children still at home, who I homeschool and care for my elderly father-in-law who has dementia and also lives with us. His wife passed away last year with Alzheimers after caring for her at home for almost 3 years. I am an RN, but no longer work outside of the home because of my caregiving obligations as well as POTS. Besides the "normal" POTS symptoms, I am also having a lot of problems with mood swings and I think some depression. I don't have any energy, am unable to exercise much or just do my normal activities because of the POTS symptoms. Prior to January, usually I was pretty even keeled with my emotions, but now anything sets me off. I cry at the drop of a hat and just generally feel depressed. I'm sure a lot has to do with just generally feeling bad physically, but frankly, I don't have time for this. My family needs their Mom/Wife/Daughter-in-Law back. Does anyone else have this issue? One other issue that is bothering me is bradycardia with chest pain. I have had CP off an on for 20 years, along with shortness of breath, arm pain and irregular heart beats, usually in the evening. My cardiologist (who does specialize in POTS) had prescribed Kerlone 10 mg at 9pm to help with this. After the first dose, my heart rate dropped from averaging in the 90's - low 100's to 44 - 45 bpm and I was having CP different from previously. This feels more crushing than the pressure I was used to. After contacting him, we stopped it for a while, but then he wanted me to start it again because even with the Middodine, my HR was increasing to 140 - 150 and I was very symptomatic with the palpitations and irregular HR. We cut the dose down to 5mg, but now I'm back in bradycardia, swinging between the 40's and 50's alternating with tachycardia. Anyone else have problems with extreme sensitivity to beta blockers? I know bradycardia can be a side effect of beta blockers, but I've never seen such extremes when I've taken care of patients. I wonder if this is a POTS thing. Finally, for those of you that have had POTS for extended periods of time, how often are you having exaccerbations? My cardiologist assures me that I should "get better" in 1-2 years (He thinks my exaccerbation was due to a virus), but I wonder since I have been symptomatic off and on since I was 19. My symptoms had actually been getting worse over the past 2-3 years, but I brushed it off as stress related to taking care of my mother-in-law with Alzheimers. My gut tells me that I will be dealing with this for the rest of my life. Anyone else out there who has gotten "better" after 1-2 years, or are most people having to deal with this long term? Thanks in advance for any light on this you guys can offer. Kaye