Debbie Rose

Oh, sorry, one more thing. When attempting to decrease a long standing higher dose PLEASE please go very slow!!! It can be dangerous to stop cold turkey or to drop too fast so go very slow!! There is no rush

SSRI's help with anxiety. Long before I had POTS I had panic attacks and anxiety and was on Paxil and Wellbutrin also tried cymbalta but paxil worked best and I am still on it. I also take clonazepam (klonipin) as needed and tend to take half a pill of 5mg first before a full dose I once had a narcotic drug issue in early 2000's(have been free of that demon for 15 years) and so I am very careful with my drugs and it is true that ant-anxiety meds that are benzo's CAN become addictive. But what I have found out from others is if you fluctuate your dose and actually take much less or none on those quiet "do nothing" days your body is less likely to have a problem. It is with constant dosing of same dose over time that can cause a problem. But not everyone has the same response, but there are some who are more prone (addictive personality-or genetic addiction causes-alcoholism in family) to issues. It is also well known that if you take the same dose and frequency over a long period they become less effective (body makes you feel you need more) and you feel a higher dose is needed. This is when an addiction can occur. But I am not saying these drugs are bad if used as needed and at reasonable doses. They can be taken regularly and be very helpful. Decreasing doses and frequency depending on how you* truly feel* is the key. I meditate and do some peddling when my anxiety kicks in-one or both have proven beneficial to be and decreases my need for the half pill Hope this helps Debbie

I had alot of PAC's and PVC's according to a heart monitor. Once I knew it would not kill me I calmed down and tried not to emotionally react to them, they have become less often....but they do get worse if I am tired and can come on when I am just sitting there. Oddly, it is so true that if I maintain a better fluid intake (2 liters or more) I have very few palpitations. And if I eat too much I can get very tachy with pounding heart beat....so odd hope this helps

Hi Nicole, With my NCS (cousin to POTS) my heart rate can go down to the 40's and 50's at rest and it did scare me in the beginning. I went thru all the cardiac workups before my diagnosis and my heart is fine. But it can be scarey. If I go from standing directly to lying down my heart slows so fast I have a pause in my heart beat to the count of 3 and feel like I will pass out, then it just beats slowly (I don't do that fast lying anymore-haha) Just thought this would help Debbie

The body is a funny thing. It does amazing things to save itself. When there is a change in function and the body thinks it need to reserve its blood flow (blood loss is common cause) it will divert blood from the arms and legs and in doing that it decreases the available oxygen flow which leads to numbness, tingling and change in sensation. Once the danger has passed it returns to normal. Simple biology which definitely affects those with dysautonomia

I have reactive hypoglycemia and in the past had "pre-diabetes" or abnormal borderline high glucose. My A1C (3 month average of glucose) has been 5.7-normal is 5.5 or less. But my recent glucose was 77 at the doctors. I do know that when I eat simple sugar-on cereal, or candy, sometimes cookies about an hour later-give or take, my glucose will drop to 40 (40-60) and I don't start to feel bad until its in the 50's. But since I know this happens I rarely indulge in such things without being sure I load up on protein before I indulge. This seems to work for me. I feel my best on a low complex carb diet-no drops at all. I have never had more detail tests but hyperinsulinemia seems the most logic as a cause though. Hope this helps

I would take one in am and then half one later in the day, or half in am was enough most days and the other half later to prevent crash. But then again I was doing alot of caffiene back then too so I don't recall a crash so much as the creeping in of a headache and decrease of abilities. It does take a while to find the right time and amount and of course discuss these options with your doctor-mine gave me some lee-way. I also did not take it on my off days-only my work days back then. It seemed to work better when I did take it that way. Hope this helps Debbie

Back in the day of being a normal person always trying to loose weight without exercising I would pick up "ephedra " pills at the local gas stations to slim down. Of course it worked great with caffeine and "craze dieting" but never worked in the long run. 30 years later my friend comes to visit and has these "supplements" for dieting and has caffeine and ephedra in it-but this is ephedra from the leaves not the root (from the roots it was causing all these habit issues and cardiac issues back in the day). So I try it while she is here and WOW!! it helps me function better-energy wise and focus wise-not longer though. I still have my limitations of about an hour upright standing or shy of 2 hours sitting upright before needing to recline but better. On the bottle it says to take one or two in am and another in afternoon but just one does me well for 6 hours and that's all I need. So I got some. I use it on days I need to be more functional-was great at Christmas and all the company- but not every day. It does not "adversely affect my HR or BP-seems the same odd numbers as usual for me. Has anyone else tried an "ephedra supplement"?

I had the excessive yawning and feeling like I couldn't catch my breath or take in a full breath 5 years before my NCS symptoms started. Went thru all the pulmonary function tests, even CT to rule out PE-all were normal. Recently I was tested positive for sleep apnea and wear a CPAP (if you have low O2 sats at night please get tested-sleap apnea can kill) and it has helped my "wakefullness " during the day but I still have the symptoms of trying to take a deep breath but it "catches" before a full breath and the need to yawn alot....Just part of the syndrome

There are so many different SSRI's out there and they can be beneficial. I have been on welbutrin and am still on paxil (for my panic attacks) I've been on paxil 22 years-way before my diagnosis of NCS and does not change my symptoms. So ask for samples and very low dose so you can slowly go up. I hope you find one that will help.

provigil helped me alot for over 2 years but then I developed severe headaches as the med wore off. I already had migraines so it wasn't worth it.

OK, so I need more proof in actual people trying all of this before I go through denying myself gluten! Has anyone tried this or any part of this for a good amount of time? My last vice is my carbs ! I have given up drinking alcohol, smoking cigarettes and drinking soda's and a daily intake of sugar (I am a chocolate addict-I confess!!!) My last vice is carbs-even gave up fats-meat fats . I am not sure I can deny myself my last vice...really. I know I am whining but I can no longer comprehend long enough to enjoy reading books, I can't tolerate heat or cold or excessive exercise so I can't enjoy a walk thru the woods or gardening. I now use an exercise peddler to recline and peddle as I should, drink gallons of water,eat salt...my life is so limited-not carbs too!!! Sorry having a little pity party for one It will pass

Wow, such a touchy subject. I have had Anxiety Disorder, Panic Attacks and PTSD since 1975 after being raped. And after lengthy therapy on and off for 40-42 years I can say that I still have my attacks and my "POTS reaction" anxiety is sometimes identical to my panic attacks and at other times very different. The "surge" I feel with POTS anxiety is a unique sensation which occurs very suddenly compared to my panic attacks which are at times a gradual awareness or can also come on suddenly but is usually a response to some threat-real or imagined. Over the past 2+ years I have come to accept whichever one it is (what does it matter-as long as you can treat it) and manage it with meditation, and imagedry(SIC) and the occasional need for medication. My goal is to get rid of it. Like my condition, I no longer care "why", I just go about my days managing it with the tools I have and the kind suggestions of others on this site Why worry about that which you can not change p.s. just my opinion,as always

Dizzy Girl is right, with true vertigo-room spinning, eyes wobbly and unable to focus, hanging on to arm of chair feeling as if your body will throw itself onto the floor vertigo is extremely scary. It would hit me any time, but more often when changing position-lying to sitting, sitting to standing. This went on for only a week-thank God-but it was a scarey week. It finally subsided and my doctor thought it was an inner ear thing-don't believe that as an explanation but anyway. I agree with Dizzy to stay put, rest, try to stay in one position-sitting or lying with very slow graduations to other positions-at least for me that helped a little. I hope this has passed for you by now and are recovering

No one took me serious when I first complained because my HR would only go up to 114-120. But my resting HR lying on the sofa watching TV was 48-54 beats a minute( frequently to 40-44 briefly). It still took 6 years+ and alot of investigating on my part to find out what I had and then to find doctors who could confirm it. Resting and reclining 30 degrees or so in my recliner my HR fluctuates with what I am watching on TV. A football game that is really good can bring my HR to 60-70's for intervals before dropping back to 54 or so. (for references my resting HR before this all started was 60's mostly and I was never an athlete) Alot of variables can affect HR-adrenaline being the most common

Yes, that irregularly regular heart beat of respiratory rhythm is perplexing but so true for many.

when my symptoms first started I thought it had to be my heart-my heart rate would be 40 then jump to 120 from lying to standing with all these horrible symptoms. I had all the usual workup and was told I had dystolic heart failure with lots of SVT , PAC's and PVC's and a leaky aortic valve. My mother and sister has SVT requiring ablations so I figured just another version. Fast forward 6 years and with a 2 week heart monitor still shows the irregular rhythms but manageable frequencies, but no heart failure-my heart walls are fine and minimal "age related"(hahahaha yeah I am 62) leaks from valves. But I see a cardiologist once a year for my own sanity-my dad developed heart failure and EP cardiologists don't evaluate the muscle part of the heart (my opinion-been a nurse too long). But I do know fluids and electrolytes can play a part in irregular heart rhythms too so do keep that in mind too.

I was diagnosed with NCS and I will take that-beats feeling like I was crazy when I had no name. The treatments are the same as POTS but I have never actually passed out-even with the TTT, but my symptoms were severe at 28 minutes. Over the past year I slowly increased using a portable "bike peddler" while leaning back 40 degrees in a chair and on good days I can go 40 minutes, but the next day I am usually wiped out. Even after a year, I still have bad days where I will not exercise because it makes it worse.....like everyone else has said-it is so individual

When I was on florinef I did much better with symptom management but after a year ( a bit more) it no longer seemed to be working. I was on 1.5mcg a day. My doc switched to midrodrine which I am not fond of. I can be in the middle of a little project and when the dose wears off it is a jarring drop in BP with a jack up of heart rate which can cause me to crash. I have been on it a few months now and although I feel really bad symptom wise without it, it doesn't make sense if I have nothing much planned that needs extra energy. I may discuss the idea of taking it as I need it with my doctor-makes more sense really. I can't work,even on the meds, so except for house chores and the occasional doctors appointment I have little need for a "pump up" really. Your info was very helpful, Thanks Debbie

It sounds like you are on the right track. Depending on where you live you may be able to get a diagnosis by see an Electrophysciologist-they track the hearts rhythm and are somewhat familiar with the oddities that is our condition. Ultimately a Tilt table test can define the condition more closely. I have neurocardiogenic syncope-a cousin to POTS but still quite a bother! I have struggled for 3 years now to drink the right amount of fluids -failing badly because I have had a gastric bypass 15 years ago. I have never inquired about IV fluids, but now I think I will ask for it. I also did not think you could take midrodrine and florinef together. I hate the midrodrine because I am usually in the middle of some chore when it wears off and I almost collapse each time. The florinef seemed to wear off after being on it for a year but maybe I can try it again soon. Most doctors suggest fluids and salt to help with BP but you should talk to your MD about that. Good to hear you are a little better. P.S. A diagnosis helped my brain wrap itself around it, and it helps with work related FMLA or disability. Otherwise its a very expensive thing to pursue just for a name-just my opinion. I am on disability(from my job) so I needed the name- SSD denied me 3 times so far-next step is the hearing-sometime in March Hope this helps Debbie

My TTT on florinef showed drop in BP and rise in HR but did not "exactly meet criteria" for POTS but rather Neurocardiogenic Syncope (though I never passed out-not even with BP of 58/40 but boy! did I have a lot of symptoms at that BP) The stress from my job and life at the time was the trigger factor for my flares that made it impossible to work. As long as I am home and doing my routines-doing things in 30 min increments with rest afterwards, I do OK. I am still trying to get social security disability because the anxiety of work, or stress of any kind (even travel-flying-to a cousins wedding) causes me to flare. Everyone with POTS is slightly different in some ways and so dead on with others, it is definitely a cause of frustration. It took me several years of pushing doctors to get a TTT that is evaluated by the right doctor , so keep looking and hopefully you will find your answers.

And so winter is upon us and my tomatoes are gone and my flower beds are covered with pine needles. The saving grace in NC are the camellia's that bloom during the winter here. I have 2 large shrubs on either side of the garage in blooms of pretty pink. They started to bloom in October and the honey bees and bumbles really liked them. I know now that I overdid things, my plans did not pan out and I tried to plant too much and then had to keep up with watering, which the high temps prevented me from doing. Since most of what I planted were perennials, I will see what comes up in spring and go from there.

Duke Hospital in Durham,NC has an EP/Syncopy Clinic that does tilt table tests and Dr. Camille Frasier-Mills is the POTS doc there. I live in Durham- Charlotte is about 2 and a half hour away....They are very busy and takes a while to be seen but are very knowledgeable.

Maybe more info? might help?? What med did you react to-symptoms?please

I used to take modafonil(SIC) for years but only half a pill and only on work days. But then I started to crash hard by 4pm and would get the worst headache so I stopped taking it. This was around the time I started with symptoms of dysautonomia, so I never went back to it. Sorry I couldn't help more