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pluslouie
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Date Joined Feb 2010
Total Posts : 55
   Posted 3/22/2011 6:47 PM (GMT -7)   
Anyone know anything about POTS? Postural orthostatic tachycardia syndrome. My docs are thinking it might be a reason for my extreme fatigue, on top of lupus. Anyone have any experience?

neutron
New Member


Date Joined May 2011
Total Posts : 2
   Posted 5/14/2011 9:35 PM (GMT -7)   
I haven't seen a doctor, but I'm pretty sure I have it. I'll sometimes have a racing heartbeat, accompanied by lightheadedness and a tightness in my chest. I've read that this can be your heart trying to produce more blood, which makes sense in my case, because I have low blood pressure, due to blood loss from diverticular bleeding..

Sometimes I get very dizzy and lightheaded when standing up, walking, or going up the stairs. The other night I couldn't even walk across the room without almost passing out, and I had to lay down as soon as I went upstairs.

I had the flu a few months ago, and the dizzy spells/weak feelings got a lot worse then and stuck around for a long time afterward. I'd feel fine as long as I was sitting down, but once I was on my feet, forget it, 'game over'.
 
I'd also be interested in anyone's advice on how to deal with POTS.

Post Edited (neutron) : 5/14/2011 10:38:56 PM (GMT-6)


pluslouie
Regular Member


Date Joined Feb 2010
Total Posts : 55
   Posted 5/15/2011 12:03 AM (GMT -7)   
Hey hey!

I don't have any advice as of yet. My main doctor thinks I have POTS, but my cardiologist has his doubts. I did the tilt table test and passed out in under 5 minutes (without stress-inducing drugs!), but my heart rate didn't go up enough. "Mild" POTS is what he's calling it, maybe.

I also have lupus, so I'm very tired. My fatigue could be also causing some of the low BP and whatnot. But I read that POTS also causes fatigue, and just standing up takes 3x the amount of energy for someone with it because their body is fighting gravity to get oxygen to their head.

I go back to my cardi this week. Maybe I'll have news. He just told me to take salt and drink less water. No luck so far! Let me know if you come up with anything!

ezim77
New Member


Date Joined Jun 2011
Total Posts : 16
   Posted 6/23/2011 5:37 AM (GMT -7)   
Im 33 yrs old just dx with mild POTS. I have a standing heart rate of 110, sitting 80, and laying 70. I tried Florinef with no success. My doctor just put me on a beta blocker called Atenenol. Im concerned beecause I have low blood pressure of 90/65. When I first wake up its 85/58. Just took my first pill this moring. Does anyone else take this with low blood pressure? People with high blood pressure usually take this to lower it. IDK So frustrated. Any input?

pluslouie
Regular Member


Date Joined Feb 2010
Total Posts : 55
   Posted 6/23/2011 12:08 PM (GMT -7)   
I did a tilt table test and passed out in under 5 minutes. (The nurse wasn't even ready for it because usually it takes 45 minutes or more!) My heart rate didn't jump as far up as my doctor would have wanted it though... He put me on salt tablets for a while, but my bp actually went down. My bp is usually 95/60 or so, bu the other day I was 85/65 when I woke up too. Now I'm taking Fludrocortisone to hopefully raise my bp.

I have extreme fatigue, and my doc I see for that wanted to check me for POTS. The cardiologist said my low bp has nothing to do with my fatigue. I'll try this stuff for a month or so, and if it doesn't help, I'm going to stop taking it. A low bp doesn't bother me, especially if it's not causing the fatigue!

Best of luck!

ezim77
New Member


Date Joined Jun 2011
Total Posts : 16
   Posted 6/26/2011 7:39 AM (GMT -7)   
Pluslouie

Please keep me updated on your progress. this is day 4 for me on Atenolol. I still dont feel right. Haven't been able to go to work. Having 2 young children makes it very hard for me, not being able to go outside w/ them. Are you able to work?

ezim77
New Member


Date Joined Jun 2011
Total Posts : 16
   Posted 6/26/2011 7:39 AM (GMT -7)   
Pluslouie

Please keep me updated on your progress. this is day 4 for me on Atenolol. I still dont feel right. Haven't been able to go to work. Having 2 young children makes it very hard for me, not being able to go outside w/ them. Are you able to work?

pluslouie
Regular Member


Date Joined Feb 2010
Total Posts : 55
   Posted 6/26/2011 8:52 AM (GMT -7)   
Let's both keep each other updated.

I have lupus and a myriad of other things, so I'm exhausted all the time. I don't have kids (fortunately, at this point) but I have drastically limited how much I work. I worked at a job for 6 years before I got sick. Once I got diagnosed, I told my boss what was going on, and he agreed to work with me. (We have an awesome relationship, and I told him I could find another job if he didn't want to deal with a part-timer, but he said he'd rather figure it out. I work a seasonal job, where normal hours are about 50 hours per week, or 10 per day often.)

I told my boss I could give him 7 hours a day, no more. And I could only work 4 or 5 days in a row. (Again, 7-13 in a row isn't odd.) There were days when I woke up and knew I would be useless and called in sick, but at the same time, there were a few days I knew we were super busy, and I pushed through it.

So, I sort of work. I don't work a ton right now, and will go up to about 30 hours soon. When I work that much, I basically cancel my social life. I'm in grad school right now, which is kicking my butt because I'm so tired all the time. I have a handful of random, part-time jobs, so I don't really have a regular schedule and lots of time "off."

Fatigue is my worst symptom, but my cardi says it is not due to low BP. My other doctor thinks it is, but no one can figure out a way to raise it. I find myself naturally sitting down a lot, just making my way to a chair without consciously thinking about it.

Keep me updated on how you are doing. You can get me here or email me at smithlights@gmail.com

ezim77
New Member


Date Joined Jun 2011
Total Posts : 16
   Posted 6/28/2011 11:32 AM (GMT -7)   
Im going to my cardiologist Thursday. I will let you know the next step. I wish i was able to work. Im not tired from this. Just when i stand i get real brain fogged and lightheadness. Then if i stand to long i pass out.

ezim77
New Member


Date Joined Jun 2011
Total Posts : 16
   Posted 6/30/2011 5:56 PM (GMT -7)   
Well went to see my cardiologist today. He left me on the atenolol w/ the same dose. He added a salt tablet and told me to do isometric exercises. I have to see him back in 2 weeks. He also sent me to a friend of his a neurologist who also agrees w/ his treatment plan. They both agree that the medicine Midodrine will be last resort due to intolerance. I pray this works!

Any change for you Pluslouie?

pluslouie
Regular Member


Date Joined Feb 2010
Total Posts : 55
   Posted 6/30/2011 6:51 PM (GMT -7)   
No changes with me. I don't remember the last time something changed with me. At least not for the better. Best of luck with this!

ezim77
New Member


Date Joined Jun 2011
Total Posts : 16
   Posted 7/1/2011 2:47 PM (GMT -7)   
Do you have a high heart rate? This whole POTS thing is killing me. Its summer!! I love summer!! My whole life has just stopped. I wish this would leave as fast as it came. Are you noise or heat sensitive? My neighbors are having a cook out, which Im usually a part of. My husband is having a few beers, which I usually would join him. I guess Im expecting a miracle pill......./.

ezim77
New Member


Date Joined Jun 2011
Total Posts : 16
   Posted 7/1/2011 2:48 PM (GMT -7)   
my email address is ezim77@yahoo.com, just in case this site goes away. lol

BxPotsy
New Member


Date Joined Jul 2011
Total Posts : 2
   Posted 7/6/2011 6:55 PM (GMT -7)   
Hello pluslouie
I'm new to this site & was hoping there were some people on here that can share their pots syndrome experiences. I was diagnosed with Pots a little over a year ago after suffering from the same symptoms since elementary school and then they progressively got worse as of 3 years ago. My experience has been awful it has completely taken over my life I not only have the syncope (passing out) if I stand for prolonged periods of time with out paying attention to the warning signs and immediately sitting or laying down. It makes my entire nervous system out of wack causing not only severe social anxiety, IBS, dizziness, fainting, irregular heart rates, extremely low blood pressure and chronic fatigue these r just a few among other things. I'm constantly exhausted no matter how much I sleep. I have no kids and have not worked in over 5 years now because this has completely taken over my life. There are days where just walking from my bedroom to the bathroom and taking a shower will leave me out of breath. My electro cardio-physiologist was the one that was finally able to diagnose me after I was in the hospital for a week. My primary care doctor could not figure out where all my symptoms were coming from or if they were all linked to why all my EKG's kept coming back extremely abnormal including the test my cardiologist ordered. Eventually after a week of being hooked up to a heart monitor that showed how just barely sitting up to standing my heart rate would jump from 80 resting to 110 standing...and a staggering 150 beats per minute just brushing my teeth, a cardiac catharization and a tilt table test (where I passed out and my heart rate spiked) I was diagnosed with Pots Syndrome.

Unfortunately I am either extremely sensitive to meds or I end up having an allergic reaction so some of the meds given to help alleviate some of the symptoms are not an option for me. For example beta blockers are given to slow down the heart rate a little bit I ended up in the hospital because it closed my airways. I was told to take salt tabs daily and have lots and lots of salt/sodium although I have yet to be able to stomach the salt tablets I do however try my best to eat salty foods. I also drink Gatorade daily for the sodium.
With POTS we become dehydrated very easily therefore I have to drink NO LESS then a liter of water a day. My doctor wants me to drink water all day his words were "I don't want to ever see you without water anywhere". So I carry my bottle tin and attach it with a carabiner to my purse...water is like an American Express commercial...I never leave home with out it. I was also prescribed Florinef to retain the water.
I have to use compression stockings for the blood pooling in my legs.
Usually its easy to see when this happens from standing immediately my legs turn red and when I press my finger lightly on them you can see the white spot.
Another thing with POTS is that you become temperature sensitive either you're constantly cold to the point that your toes, finger tips and lips turn purple.....or in the heat you are just to hot its unbearable.
I'm also on Lomotil for the IBS its caused me from the blood leaving my stomach extremities.
I also take Buspar now for my severe social anxiety thanks to POTS causing my nervous system to send out the wrong fight or flight signals.
I also take Meclazine on occasion for the severe nausea and vertigo.

So far I take nothing for the fibromyalgia, arthritis or the super ventricular tachycardia, the atril fibrillation or the chronic fatigue.

I can tell you my experience has been that these symptoms come in phases a month of nausea and fatigue then the next month will be vertigo, loss of appetite and tons of light headed moments. I cherish the good days.

Lyme14
Regular Member


Date Joined Jun 2011
Total Posts : 381
   Posted 7/6/2011 9:29 PM (GMT -7)   
 
BxPotsy,
 
I'm sorry to hear you're experiencing such severe symptoms!  Have you ever been checked for mycoplasma or Lyme?  Some of the symptoms you mentioned are also common to mycoplasma infection and Lyme.  Have you tried Smar***er?  It has the electrolytes like Gatorade, but without the high fructose corn syrup.   I don't have POTS, so I cannot be of much help on this.
 
 
I'm a music teacher, and not a doctor. Anything I post is based on my own experience and lay opinion.
Lyme, Babesiosis, Mycoplasma (Asthma), Fibromyalgia (Soft Tissue Injury), Costochondritis,
CFS (Mitochondrial Dysfunction), IBS (Candida & Leaky Gut), Hashimoto's Thyroiditis, Adrenal Fatigue,
ITP (Low Platelets), TMJ, Plantar Fasciitis, Schamberg Purpura, Tinnitis, Allergies, MCS

ezim77
New Member


Date Joined Jun 2011
Total Posts : 16
   Posted 7/7/2011 8:19 AM (GMT -7)   
bx potsy

This is a very frustrating! I've been dx for almost 5 weeks now. I was lucky to get dx after a week of symptoms. Its very hard for me to deal w/.
I tried florinef for a week no success. Took atenolol for 2 weeks, it lowered my heart rate, but when i stand i feel so aweful: braig fog, tired, dizzy, lightheadedness, chest and throat tightness.

i went to another cardiologist who took me off the atenolol and put me on nadolol. i guess its a non selective beta blocker to help w/ heart rate and nerves in the legs and arms to help blood flow. I also take a salt tablet.

I have no idea what caused mine. I just hope it will go away as fast as it came. I wish everyone that has this the best of luck! i pray everyday! This is so frustrating and very hard to deal w/.

Curlycarrie
New Member


Date Joined Jul 2011
Total Posts : 3
   Posted 7/7/2011 11:49 AM (GMT -7)   
There are some good POTS channels on youtube. UKPotsies and TeenPotsys are 2 channels that have a number of people with POTS who post weekly videos qbout their POTS.

I have Ehlers danlos syndrome and Pots

BxPotsy
New Member


Date Joined Jul 2011
Total Posts : 2
   Posted 7/7/2011 2:52 PM (GMT -7)   
Lyme14 I have been tested for everything under the sun I feel like a human pin cushion at this point including test for just about every auto immune disease. I'm going to try what u suggested to drink see how that works I just like the other sports drink as a treat and a break from all the water that's going to turn me into a mermaid some day lol.

Ezim77 hopefully they find something that works for your symptoms I have read and seen videos on you tube of people that have had some success with medications that targets a few of their symptoms. Unfortunately that hasn't been my experience.

Curlycarrie I have watched those you tube videos etc on POTS and have even sent the links to my close family & friends so that they can see how others go through it as well.

Wishing you all the best.

Hitze
New Member


Date Joined Jul 2011
Total Posts : 2
   Posted 7/8/2011 1:11 PM (GMT -7)   
Re: POTS and all the symptoms
Brain fog, tired, dizzy, light headedness, chest and throat tightness are only a few of what people with tickborne illnesses deal with. These symptoms are identical to what I went through for a very long time and there have been other symptoms. I was diagnosed with CFS, Fybro, and more. When it got really bad (seizures) I saw many doctors resulting in a POTS determination with no known cause for the seizures). I then had a positive lab from a medical college for Lyme but after the typical treatment time ended, I was pushed out the door and now pay out of pocket to see a Lyme doc.

I have been in treatment for nearly two years for Lyme and seeing mayor improvements but feel like I will never be rid of the long-term damage from not getting correctly diagnosed. It is a shame so many doctors will not recognize Lyme and the other tick infections. I have many friends in the same situation.

Positive Lyme tests are not always present and we are being cookie cutter treated when they finally do find a positive. No matter your body size, interactions with diary which weaken some meds, how long you have had it - you get the same 2-week course. If you're lucky, 4 weeks. Then you are cured. Get real. If I spray my counter that had raw chicken on it with bleach and miss a spot does that mean there are no bacteria remaining on my counter? Is everyone's immune system the same when it comes to fighting bacterial infections?

Unless you see a doctor between March and August in a heavy Lyme area and you express the exact symptoms that are seen as typical and always present (not), expect no treatment and continued strange symptoms that have unknown causes or cures, which can come and go. If you are treated for Lyme and don't improve much consider treatment for the other tick infections.

The medical community is far behind on this one.
Search Lyme & POTS. And please don't refer to it as the plural Lyme(s). One case of it is all anyone can handle.

If this post helps just one person, it was worth the time typing it.

ezim77
New Member


Date Joined Jun 2011
Total Posts : 16
   Posted 7/9/2011 9:36 AM (GMT -7)   
Hitze

Wow I have all those symptoms plus a high heart rate when I stand. I never got tested because they said I didnt have a rash. What test should I request b/c my docs keep saying I dont have lyme or tick infections. How do they know if they dont test. Yes, this was helpful for me. Now I need some answers from them. Please let me know. Thank You!!

Lyme14
Regular Member


Date Joined Jun 2011
Total Posts : 381
   Posted 7/9/2011 10:01 PM (GMT -7)   
 
Ezim,
 
People can have Lyme without the rash.  Get tested through IgeneX lab, as their test is more thorough than the mainstream labs' Lyme tests.  Make sure they also test for co-infections.  Take your results to a Lyme Literate MD, as that type of doctor will look at the results differently than a regular MD.  If you need help finding a Lyme Literate doc in your area, post on the Lyme forum here.  If you know the cause of your symptoms, the test is worth the money.  Otherwise you'll keep throwing money after all sorts of treatments without eliminating the cause.
 
 
I'm a music teacher, and not a doctor. Anything I post is based on my own experience and lay opinion.
Lyme, Babesiosis, Mycoplasma (Asthma), Fibromyalgia (Soft Tissue Injury), Costochondritis,
CFS (Mitochondrial Dysfunction), IBS (Candida & Leaky Gut), Hashimoto's Thyroiditis, Adrenal Fatigue,
ITP (Low Platelets), TMJ, Plantar Fasciitis, Schamberg Purpura, Tinnitis, Allergies, MCS

ezim77
New Member


Date Joined Jun 2011
Total Posts : 16
   Posted 7/10/2011 10:19 AM (GMT -7)   
Lyme14

Does my reg. doc. do the test and send it there (igeneX lab)? I looked its in CA

Lyme14
Regular Member


Date Joined Jun 2011
Total Posts : 381
   Posted 7/10/2011 10:20 PM (GMT -7)   
 
Yes, your regular doc has to write the script for you to get the test done.  When you have the script, the lab can send you a kit, which you take to a local clinic or hospital to have the blood drawn, and then ship it to IgeneX.
I'm a music teacher, and not a doctor. Anything I post is based on my own experience and lay opinion.
Lyme, Babesiosis, Mycoplasma (Asthma), Fibromyalgia (Soft Tissue Injury), Costochondritis,
CFS (Mitochondrial Dysfunction), IBS (Candida & Leaky Gut), Hashimoto's Thyroiditis, Adrenal Fatigue,
ITP (Low Platelets), TMJ, Plantar Fasciitis, Schamberg Purpura, Tinnitis, Allergies, MCS

Leellaa
New Member


Date Joined Dec 2011
Total Posts : 3
   Posted 12/6/2011 9:14 PM (GMT -7)   
Check out Dr. Peter Rowe's YouTube video on orthostatic intolerance - it is very clear, and goes into the various forms, how to get a diagnosis, including articles you can take to your doctor if s/he doesn't understand what they're seeing in you, pharmacological and non-pharmacological treatments, and overlapping/co-existing conditions......

Dr. Rowe works at John Hopkins University...

Jwatts2
New Member


Date Joined Sep 2012
Total Posts : 1
   Posted 9/28/2012 3:46 PM (GMT -7)   
I was just given the diagnosis of POTS today. I had the tilt table test (which was awful) done with a standing heart rate of 172. It's very important for people with POTS to drink lots of water, not limit your water. A tilt table test is a must to get the diagnosis. Other symptoms I've experienced are exhaustion that can't be described, reactive hypoglycemia, memory loss/confusion, shaking, sweating, sore soles of my feet in the morning, severe headaches, chest tightness, and many others that I can't remember.

I've been hospitalized four times for this, each time telling me I'm depressed or anxious. It's important to find a doctor that will listen toy you.
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