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Living With Pots Syndrome

I became sick in june of this yr with what was thought to be a virus. Little did I know that worse was to come. I had tachycardia real bad and when I stood up I felt like my legs were going to give out. I was so tired and just couldn't stand to even wash the dishes. I spent 5 days in the hospital with high pulse rates and up and down bp's. I started a beta blocker which seem to help and when I got home and a couple days passed my pulse started to go back up. I ended up in the er for the 3rd time and they upped my meds. However, I began to itch so bad. I went to my primary doc and she said I was allergic to that beta blocker (lowpressor). She started me on attenilol. How unfortunate for me the same itching returned. It was awful. If I didn't take a betablocker the tachycardia was worse but if I did I thought I would go crazy itching. My doc in the meantime got me an appt with cardiologist at UNC Chapel Hill, NC. I went to my appt on friday Aug 20. After those docs looked at all my records within mins they told me they knew what was wrong with me. I was relieved to hear something but sad at the same time. When the doc said u have POTS Syndrome, I thought wow I knew something was wrong but then were the words there is no CURE. They started me on cardizem 60 mg. a calcium channel blocker. It's been 5 days and cardizem doesn't even touch my tachycardia. What in this world is next. I was told these were the 3 meds primarily used for POTS.  I am 47 yrs old. I have been studying on dyautonomia since my diagnoses.  I question if I have not  had POTS many yrs but it was diagnosed as other things. Maybe after this virus my increased pulse with no relief was just a new added symptom. Is this possible? I need all the friends with POTs or dyautonomia I can get. I need postive attitudes and motivation. I
greeneyes28326 greeneyes28326 46-50, F 16 Responses Aug 25, 2010

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Hi my boyfriend of 13 yrs was diagnosed with pots on Dec 9 after thinking he just had a virus it just kept getting worse he could not walk at all finally he called ambulance and was in the hospital for 5 days started him on a beta blocker and another med he is home now and still can't do anything are you able to move and how long did it take and I hope you feel better because I know its hard he is 33 we have 4 kids and now I am taking care of 4 kids and him

Nadalol is the only betablocker that worked for me. Try it, I had tachycardia everyday and used toprol, it didn't work, had my heart slowed in ER alot. Then started Nadalol and it worked. Never needed heart slowed again!

I am a 37 year old nurse with POTS. Long story short, I've struggled with tachycardia, palpitations, weakness, dizziness, near syncope and even full out syncope for years! It remits and unfortunately relapses. Have had million dollar work up. After taking a assortment of unpleasant cardio meds, I've actually found Lexapro to be most beneficial & I only take 1/2 start dose which seems to beat side effects of the SSRIs (weight gain & decreased libido). POTS is real! It is misunderstood and certainly not fully understood. I think our ANS has somehow gotten a glitch. I think viral and possibly autoimmune. Hang in there. You can deal with this! It is important you are followed by an electro physiologist/neurologist who understands this disease so you get the care you deserve. Good luck & God bless!

I've had POTS for the past 4 years with no relief insight. I've tried all kinds of meds. The waiting list to Mayo's is 9 months... I have a good Cardiologist here but ther're at a lost as to what to do next. I know I supposed to exercise,but I was doing that at the time of diagnosis. All I can do is lay around. To many nonprofessionals keep offering me advise as if it were that simple. Need encouragement. Has anyone applied for disablity and been sussessful? Thanks madkat123

Yes I have I'm in nyc and I got a lawyer pots isn't a known reason for disability but your lawyer has to use the cardiology section and link your problems to problems the ssi recognizes..

POTS is horrible! My dr (cardiologist) said do to do a few things; increase salt intake, tilt up the headboard in bed, wear leg compressions, and acted like I would be new again in a month or 2. I have lived with this mildly for YEARS and bad for over 6 years and finally get a diagnosis on top of diagnosis of pituitary tumor, breast lump, 3 hernias, hemorrhaging ovarian cyst and that is it. Do 3 things life will be normal! Ugh this dysautonomia would NEVER be treated this way if it presented itslef to the surgeons or cardiologists or neurologists themselves! Or the disability people! NoONE can downplay POTS to me. I lived a life and have fought to live it for 6 -12 years and could NOT live life and now I know why! I am strong...this makes you weak! I was healthy...this makes you sick! I was functioning....this makes you non-functioning! If I didn't live trying to fight this for so long, maybe someone could say after a diagnosis people use the disease...but not with me (and I am sure my fellow POTS people) we were/are so sick that it takes a fighter to get a diagnosis even though we are ******** of our last energy reserve fighting! Am still getting care for pituitary tumor, breast lump and will be seeing an auto neurologist...but sure hope this all gets taken very seriously. I (we) have lives we would like to live. I am so sorry for the parent(s) on here with this affecting their child. It must be one of the worst things to see your child hur/affected by this. I will be praying for all POTS PEOPLE!

POTS is horrible! My dr (cardiologist) said do to do a few thing; increase salt intake, tilt up the headboard in bed, wear leg compressions, and acted like I would be new again in a month or 2. I have lived with this mildly for YEARS and bad for over 6 years and finally get a diagnosis on top of diagnosis of pituitary tumor, breast lump, 3 hernias, hemorrhaging ovarian cyst and that is it. Do 3 things life will be normal! Ugh this dysautonomia would NEVER be treated this way if it presented itslef to the surgeons or cardiologist or neurologists themselves! Or the disability people! NoONE can downplay POTS to me. I lived a life and have fought to live it for 6 -12 years and could NOT live life and now I know why! I am strong...this makes you weak! I was healthy...this makes you sick! I was functioning....this makes you non-functioning! If I didn't live trying to fight this for so long, maybe someone could say after a diagnosis people use the disease...but not with me (and I am sure my fellow POTS people) we were/are so sick it takes a fighter to get a diagnosis even though we are ******** of our last energy reserve fighting!

I also have POTS and am trying to get some online support going for myself and others with this disorder please check out livingwithpots.com and offer your support.

im 33 years old, just dx w/ mild POTS. It is horrible! Bedridden for 3 weeks. I cant make it to work or play w/ my 2 young children. Never had any symptoms before. I wasn't sick w/ a viral. One day at work boom all the symptoms appearered and fainted. All my tests look good, except i failed the tilt table test. Tried fFlorinef for 1 week, no success. Day 5 of Atenolol beta blocker. My blood pressure is low to begin w/ like 95/65, it now goes down to 85/58. Kinda scary. I feel tired. It does lower my heart rate but when i stand i still get brain fog, dizzy, lightheadedness, chest tightness, throat tightness, feel exhausted trying to walk. Not able to function. Does it get any better? Any input will be greatly appreciated. Thank You

To Rowecrow:<br />
Do not get pregnant! If you want your own biological child get someone to surrogat the embryo from you and your husband. I lost one baby to mis-carriage and my second the doctors had to take I got so back off. I have POTS and SVT.<br />
Losing a child is a pain that fades but never leaves please take my advise for what it is worth, you can get a surroget, a sister, and aunt, any child bearing with-in the age range female you can trust.<br />
Save yourself the pain and go that route, that way you and your husband can have your own biological children without the loss. Your in my prayers, POTS can be a living nightmare and most doctors don't even know what it is.

I am 26, and I was diagnosed with POTS a few months ago. I am constantly doing research because it seems that no one (doctors) knows that much about it. My cardiologist is the one who diagnosed me, but when I asked if that could be what was causing my complex migraines, he said, "maybe." After doing a lot of research, I would say that POTS is absolutely the cause of my horrible and sudden migraines. It's amazing how this diagnosis has brought about so many answers to the questions I've had since I was very young (POTS symptoms started around 9 or 10). Contrary to many other POTS patients, I have lead a very active life. I have played softball and volleyball since I was 5, but I always had tachycardia, headaches, and digestive issues. I think things got dramatically worse when I graduated from college and started my full-time job. I literally just sit all day every day at my job, which is something I have never done before. I noticed that I was gaining weight since being so sedentary, but with student loans and other bills, I couldn't afford a gym membership, nevertheless take time out of my schedule to go to the gym. Gradually I felt worse. First fatigue, then insomnia, then nausea, then headaches...until one day at work I felt really hot and my heart started pounding (more than usual). Suddenly, the left side of my body was numb, and I couldn't speak. I just mumbled sounds. I freaked out because I thought I was having a stroke, and I ended up having a panic attack, which obviously made things worse. My co-workers called an ambulance, and off I went to the hospital. The doctor told me that the CT scan was clear, my EKG looks normal--'cause he thought I had a panic attack so the heart rate seemed to coincide with that--and my speech returned to normal. All-in-all, I got nothing from the experience except a $800+ bill. <br />
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I got in with a neurologist who said I had complex migraines and immediately prescribed topamax. Ever since the "episode" at work, I had been dizzy, forgetful, lightheaded, nauseous, and had awful headaches...on top of my usual rapid heart rate. The topamax made things 10x worse. He said to stick it out because the medicine takes time, but after 3 weeks of my husband driving me to work and awful eye pain, he finally changed my presc<x>ription to amitriptyline. Not much changed, so I did some research online. 5 billion medical articles later, I came to the only conclusion I could reach: POTS. It was the only thing that explained all of my issue since I was younger. I mentioned it to him, he smirked, listened to my heart for 10 seconds, and told me to just keep taking the amitriptyline and come back to him in 6 MONTHS. His attitude alone pissed me off. I called my dad's cardiologist and made an appointment that day. Within 5 minutes of my cardiologist reading my symptoms and looking at my EKG he told me I had POTS. *@#&! I knew it! <br />
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Finally I had my answer...so I thought, but then came bad news. No cure. Eat salty food, drink extra water, take my meds (toprol), and do 30 min of cardio a day. That was all he could tell me. I stayed on the amitriptyline with the toprol for the last few months. My husband and I want to have a baby now, so amitriptyline is out. I gradually came off of it for the last few weeks, and the withdrawals are horrible. Everything is acting up again, and I'm at a loss. I've read over and over again that POTS doesn't cause complications during pregnancy, so I think it'll be ok. POTS is so ambiguous...it's hard to know which direction to take as far as treatment goes. I wish I had a doctor that knew more about it, but I'm hoping to find a support group through the internet that will help me. We can all work together to make ourselves feel "normal." :)

Boy, am I glad to find this site. My 13 year old son has just been diagnosed with POTS but he has certainly had symptoms for years without experiencing the full-blown acute phase that he is in now. He missed more than 1/3 of the school year last year due to getting sick all the time and migraines. We've just moved to Portland, Or. and he got a virus the 2nd week of school. This led to excessive sleeping, hospitalization and finally the diagnosis. We did well the first week (last week) and he was able to got to school finally but then he got dehydrated this weekend and sat too long and now he is unable to stand without help, and his tachy is nuts when he does but he is also fainting and obviously having weakness in his legs. It took me 3 hours just to get his sitting fully on Mon. and actually he ended up walking with just a little assistance from me that afternoon but yesterday things got worse and his vision kept going black and he couldn't walk more than 3 steps without falling/blacking out. Today, it's early but he is sitting up and I'm hoping he'll be able to walk to the bathroom etc. without all the help he needed yesterday. I have just found a job but how am I supposed to leave him to work when he has relapses like this? The psychiatrist who diagnosed him has him on 75mg of Zoloft and that has helped (I think) but then again here we are again in a bad cycle. My pediatrician has no knowledge of POTS and the psychiatrist doesn't see patients unless they are in the hospital. I don't know anyone here yet, am really in need of a support group and don't really know what else to do. He is drinking the 64 fl oz that was recommended, eating extra salty things, moving frequently and not lying down once he is awake but still he can't function. I assume this is just part of the syndrome but what do you guys do to get out of this part of the cycle? The school is going to provide an at-home tutor, and their elevator is going to get fixed but still, in the meantime we're stuck. Do any of you use walkers or have wheelchairs for when you can't walk on your own or get very far once you are walking? Do you have handicapped placards for your cars? I cant imagine his walking all the way through a parking lot and then having the strength to walk in a market for example,, without something to push or sit in. I'd appreciate any suggestions you can give. Thanks. Angela

First, the vast majority of people with sudden onset POTS (viral trigger) tend to recover, although it can be a very slow process. Second, there are a wide variety of medications that you can try to help manage the condition until your autonomic nervous system stablizes. Some are fairly innocous (flourinef, midodrine, increased salt intake); others have significant side effects. Start by taking at look at http://www.dinet.org/what_helps.htm. Also look for current drug recommendations from Dr. Blair Grubb (Ohio), Mayo Clinic and Johns Hopkins. It is a good idea to maintain a daily log --monitor your heart rate increase upon standing and rate your fatigue, fogginess, headaches, etc, on a numerical scale. This will help you figure out what is and what is not working for you. My son has had the most luck with vasoconstrictors -- he experienced extreme fatigue with the various beta/channel blockers we tried. Third, you may also want to find a local general practitioner who is willing to work with a specialist from a major medical center. Many cardiologists & neurologists with local practices simply do not see enough of this condition to merit investing a lot of time in learning about it. Our Virginia pediatrician works via e-mail with a Rochester Mayo Clinic Doctor to implement my son's treatment plan -- this seems to work well. <br />
Fourth, We have also had good results with the Lexapro, and a sleep aid can do wonders when the fatigue and long sleep periods get your days out of whack. Fifth, carefully graduated exercise is also important -- try beginning with a recumbant bike if you have trouble being upright.<br />
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Stick with it -- it takes trial and error to find what works for you! All the best<br />
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My 25 year daughter has POTS. Her cardiologist put her on Lexapro after she flunked a tilt table test. Some of the mental health meds really help this condition more than the cardiologist meds. The only other medication she has ever received is Atenelol.<br />
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I hope this helps. She can't function without this medication. Lexapro has been a life saver for her.<br />
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Good Luck.

Hello. i can understand what you are going through. I am so sorry first of all, I just joined this site, I had to find people that understood what i was going though. I have been going thru this for 3 yrs. It is alfull. My life has changed so much, & as you talked about the med's I can not find any that work, they made me worse. So take care..

So good that you finally got a diagnosis. I'm only in my early 30's and I believe I have had POTS symptoms since I was about 14yrs. My diagnosis came about after I became sick with Rubella (German Measles) and I never got over it. Then my heart with tachy and blood pressure were out of control and I was in hospital for 2 weeks in the Cardiology ward. The lethergy and faintness were horrible and still have bad days now and that was nearly 4yrs ago. I'm still under a Cardiologist and I'm on a newer medication on the market called Ivabradine 5mg it's main use is for chronic stable angina but it has worked so well for my tachy. I tried Cardizem,Noten and Anpec and they all lowered my blood pressure but did nothing for my heartrate. It is frustrating that you have to research it all yourself. My Cardiologist or Doctor hasn't really offered my any info on this condition and it is hard to live with and does change your life dramatically. Hope you are doing ok :)

Ugh! I really feel for you. I know firsthand how frustrating the medication roller coaster can be. Just when you think you've got something that works, it doesn't anymore. And the fact that you are allergic to the betablockers just absolutely stinks! I am on Bystolic, which helps keep my pulse manageable, but I am still so sick with all of the other symptoms of POTS. Regarding the virus you had, if I'm not mistaken that is a likely cause of POTS, so maybe your virus brought it on full blast. <br />
Glad you posted, hang in there and try not to get too down! I just celebrate the good days (as good as they get) and rest through the bad.