HopeSprings

although i'm not officially diagnosed, my doc prescribed ritalin as i kept falling asleep during the day (and slept very well through the nights at the same time). it made a huge difference for me as well as for my family because now i can stay awake during the day AND i feel much brighter too

if i were you i'd had a sleep study done to see what's going (wr)on(g)

corina

Corina:

The Ritalin didn't make your heart symptoms go crazy?

Oh my poor girl, I so feel for you. I had a four year old boy to take care of during my last pregnancy and it was soooo incredibly difficult. You are really lucky that you did so well into your 8th month. I was a complete mess, with POTS symptoms SO much worse the entire pregnancy. It was so bad and since I had no help during the day with my little boy, I begged the Dr. to induce me early (ten days early which i feel guilty about to this day) because I just couldnt take it anymore. I know how awful it is to be SICK and not be able to just rest because you have a little one to take care of. You are doing so well and with your husband going away on top of this??? You're superwoman. I hope you have family or friends to turn to for help? Try not to worry about this sudden worsening of the POTS -- it probably is the bug you caught (pneumonia is miserable) and I'll bet once this has passed you will feel much better. My POTS always flares up when I am getting a cold or a bug. I worried too because I felt so bad during the pregnacy that I would be permamently worse and unable to take care of my son and the new baby ...and it was worse for a bit until the hormones settled down and then I returned to my formerly messed up, but not worse POTS self. Hang in there (((hugs))) and try to take this day by day. You are almost there and everything is going to be ok.

Brian, I just watched your benzo withdrawal videos. OMG, been there, done that and I can related to everything you went through, ESPECIALLY the stupid Dr's who know nothing about it and dispense bad information and sometimes very DANGEROUS advice. I was on a "low dose" of Klonopin for only 6 months when I started having some weird symptoms, realized it was the medication and decided to get off. I was told that I was on such a low dose, I could just stop taking it... so I did. BIG MISTAKE (as you know). This was back in 1997 -- I was 24 -- went through benzo ****-- by 2001 I was STILL in protracted withdrawal. AND YES Protracted Withdrawal Syndrome is real, it is documented and you're right, most Doctors are clueless about it. I ended up reinstating, figuring if I could stabilize and do a slow taper from there I might be able to get out of the mess I was in. That was a complete failure and I had to go through it all over again a few months later. Fast forward to 2010 -- I am still not right from that initial cold turkey. I have had disabling symptoms all this time and wonder if this recent POTS diagnosis is a result of autonomic nervous system damage either from the benzos, the cold turkey or from time spent on Paxil (which also had a horrendous withdrawal). I have a few other theories about the cause of the POTS -- (a neck injury from a chiropractor being one), but the benzo question has always lingered because it was from that point on that I never felt like myself again.

Anyway, I just wanted to ask you if you remember any of this -rapid heartrate while standing stuff- BEFORE the Xanax.

"My sleep disorder test didn't show narcolepsy but it's because I have nocturnal myoclonus and my body jerks me awake when I try to go into REM sleep. And in order to get a diagnosis of narcolepy, you have to enter REM. (Obviously, I didn't have the smarted sleep study doc ... lol ... ) "

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WHAT? You get no REM sleep EVER? That doesn't sound good?

I had a sleep study done too and all the guy said was I wasn't getting enough "deep sleep," but never returned my call to tell me what to do about it. My sleep study Dr. wasn't that smart either, lol. I never feel rested -- I think this is a common complaint with POTS. I wake up every morning feeling drunk and exhausted... and many times throughout the day feel like I am asleep and awake at the same time. It'd odd.

Like my head is floating on another planet and desperate to get back to who I once was.

"ScienceDaily (Mar. 30, 2006) ? AUSTIN, Texas--Some women with menstrual cycle disorders like asthma and migraine headaches may be experiencing allergies to their own estrogen and progesterone hormones, Texas researchers have discovered."

I agree with this statement. So essentially we are allergic to ourselves? I came to a similar conclusion when all hormone testing came back normal over and over -- it's not too much or too little of anything, everything comes back "in range," but it's a sensitivity to those "normal" hormones. Oh and I was an absolute mess during pregnancy -- ten times worse when things should have been better (if we go by the POTS/blood volume theory). It was those darn hormones... if only it were possible to isolate which ones are causing the problem and some way to counteract the sensitivity.

Simmy -- one more question. I saw Dr. Tullo before my POTS diagnosis -- he seemed ok. I would like to go back now that I know what is wrong to have him "manage" me, but only if he knows more than "drink lots of fluids, load up on salt, try Florinef." He's only twenty minutes from me, which is so convenient, but only worth it if he knows his stuff. Is he up on the latest research, does he dig deeper, look for underlying causes etc?

Thanks.

I can't even count the times I was told, way back before I figured out what I had, to calm down, that I was having a panic attack, or anxiety, or hyperventilating... and they're the "experts". We know better now and thanks to dinet and its members, countless others do too.

Yes, it does leave me breathless when that happens. It's totally involuntary, I even said on the video that I was trying to breathe normally, but I guess with my heart pumping so fast and not filling the chamber completely before pushing out the blood, my brain compensated for the lack of oxygen by making me breathe that way. After watching it again I heard myself say "I'm getting buzzy in the headed." Man, what a ride!

Naomi - I'm lucky to have found my PotsDoc / cardiologist on the physicians list here. Dr Nicholas Tullo, East Orange, NJ. I'm happy with him and I know I'd be much worse off without him. The watch is a Polar. I can't read the model number, but It was the cheapest one, about $60 two years ago at modell's, but I'm sure you can find it on Amazon or elsewhere. Just make sure you get one that comes with a wireless chest strap transmitter, so you can view your heartrate in realtime and see the trends. As far as barometric pressure, I'm convinced it has a real impact on how we feel, in fact just a few weeks ago we had a nice conversation about it. Search for "Linking Barometric Pressure". My meds have helped some, to the extent that I'd be much worse than in that video without them, but...

lieze - You're right. Again I performed the activity (driving, standing) only about half an hour after taking my morning meds. Could another few minutes really have made such a huge difference? Still, there have been times when I woke up a little early, went to the bathroom and then back to bed with only minimal tachy (120-130), before taking my meds. Maybe it was that pink flamingo / yellow sailboat thing (private joke). It is possible though, as you suggested, that my meds simply aren't working for me as they once did. I am after all getting worse overall over the last few months.

OK, weight. Before I got sick two years ago I would eat over 3,000 calories a day just to keep from losing weight. I'm 5'10" and back then I weighed 142. I was that way all my life, I could eat a cow and lose weight doing it. Within six months of becoming ill I ballooned to a high of 168, even though I had little appetite and ate much less, but obviously my activity level also tanked. I literally looked like I was in my third trimester, it all went straight to my belly. It took over a year, but I've managed to get back down to about 150 now, but don't ask me how I did it because I haven't got a clue, if anything I'm even less active now. Maybe the tachycardia, which instantly induces sweating, helps to shed the pounds

Jana:

See I knew it. The Dr. looked at me like I was nuts for worrying about side effects from a "mild" OTC medicine and my husband was all annoyed like, you can buy it in the store without a prescription -- it's "just" acid medicine... stop being ridiculous. At least the people HERE get me. So darn, I dunno what to do-- this constant pressure is awful and then burping like a trucker -- and it kinda feels like you can't breathe... I gotta do something. Which would you say was the lesser of two evils -- the Prilosec or Prevacid? I think they do two different things? Also, I wonder if the pill can be cut in half? Let me know your thoughts and what the cardio recommends.

Hi Naomi~

It sounds like I have a similar kind of pain that you do, and my gastro did an endoscopy and found out that I have esophagitis and a small hiatal hernia about a month ago. Both Prilosec and Nexium played around with my BP and especially my HR. My BP still drops when I stand (I have OI), but my heart rate went from its usual jump from 60 to 110-120 to the 140s, and I definitely felt more faint. Right now, I'm taking two 15 mg Prevacid, which is also affecting my HR, so I need to talk to my cardio and gastro doctors about this during my next appointment.

I also had my appendix taken out 2 weeks ago, and it looks like I have celiac disease (here comes the gluten-free diet) and possibly gastritis. It's overwhelming. Until 3 months ago, I had never had digestive issues (except my gall bladder out 2 years ago), and then all of a sudden I have a plethora of them! No fun.

Let us know what they find out, and I would ask for an endoscopy as well. Good luck!

Cheers,

Jana

Can someone help me understand this article? I have definitely made the menstrual cycle connection with the POTS, dizziness especially. I tend (though not always), but tend to feel better right before my period and then things get BAD. I thought maybe it was the total drop in hormones and then the climb back up making things bad and then feeling better when hormones are more stable?

Is this article saying things will be worse from the time you get your period until mid cycle?

My Dr. is recommending I take either Prilosec or Pepcid --- I have constant pressure? in the stomach/sternum/spleen/rib area -- an ultrasound was done and nothing was found. He said it's probably gastritis and to try an OTC acid medicine. I really try to avoid taking anything because I seem to have a bad reaction to EVERYTHING and I am now fearful of all medicine. Should I take Pepcid or Prilosec and is there ANY chance of bad side effects -- especially dizziness or heart symptoms? How have any of you done on these medicines?

Also, I am going in for a gastric emptying study and just wondering what to expect?

Thanks.

Oh and I wanted to also say -- yes I would think Social Security would believe you seeing that video. How could you possibly work if that happened at work? And just the up and down of the symptoms -- some days not so bad, some days barely functional... how would it be possible to commit to a job? I hope you get it.

Simmy, wow although hard to watch, I was glad to see this documented. It really does capture the Pots "experience." I have a few questions. If this is how you are a half hour after meds.... are they helping?? I noticed you are in NJ (I am too) and was wondering who your Pots Dr. is? I can't seem to find anyone locally that knows very much. Also, I would like to get a heartrate monitor like the one you have -- can you tell me where you got it, what brand/model etc.? I certainly hope today was a better day. I have to say the last fews days have been miserable for me-- very dizzy -- today was better. Maybe it had something to do with the weather? -- it was kind of grey and rainy for a few days. You mentioned barometric pressure -- have you found this impacts the POTS symptoms?

Ok so that was more than a few questions !

I could have written this word for word. The apathy, the apprehension, the sheer mental exhaustion of yet another Doctor, having to explain it again and AGAIN, feeling SO awful, but looking perfectly peachy and mostly ...wanting to uncover "the root cause" of it all! God, how I know. I have a feeling this Dr. isn't going to know diddly squat, on the other hand you just never know! This is why I seek out Dr. after Dr. (with large breaks in between when I get sick of it all) because you just never know when you might stumble upon the one who could help. If there is any possibility that he may know something, I'd give him a try (just keep expecations low, but hope for the best). Good luck.

Mkoven -- is this something that would readily show up on an MRI of the head or neck? I have had multiple MRI's and none of this was ever mentioned. Would it have been picked up by a radiologist or neurologist or is it something only a Dr. very familiar with would notice? Just trying to get to the root of my problem -- trying to rule out causes one by one. Thanks.

I keep hearing about mitochondrial disease. What is it, what symptoms do you need to have to possibly have it and what type of Dr. do you go to to investigate this?

Thanks.

I have this sensation too -- it's a tightness or pressure in the chest, like I am being squeezed from the inside. It's right around the sternum area and feels like you cannot get a full breath. It IS scary. You mentioned this often happens after you eat -- same here. I feel it at other times, but definitely happens every time I eat (or drink sometimes) and then I feel really spacy dizzy. I wonder if the chest sensation is really gastro related?

Erika -- hope the injections help. This has been suggested to me as well, as I have a disk pressing on the nerves going down my arm, which causes weakness in the arm -- but I am too chicken to get a needle anywhere near my spinal cord! You are very brave!

MKOVEN-- Just curious as I have neck issues as well -- what made your Dr. decide to put you in a collar? I have been wondering if a collar would help me because I have reversal of the curve in my neck as well as disk problems. My neck tends to stick forward and when I am feeling my worst (dizzy/POTsy), I have tons of pressure in the back of my head and neck. How does it help your ANS issues?

Anyone else have blood in their urine? Urine tests keep coming back positive for gross hematuria or microscopic every time my urine is tested for the last several years. I have had a complete urologic work up, saw a nephrologist etc., they can't find anything. Is it sometimes normal to have chronic blood in the urine? Just wondering if anyone else experiences this? My regular Dr. is telling me to go BACK to the urologist -- I don't see the point. (and as a side note -- are they ever able to come up with answers ...EVER??)

Sue- I am just not sure how the current state of my neck would be "causing" the POTS symptoms. I don't think a Dr. is going to know either since they don't really know what causes POTS. I wish I could find a good neurologist to investigate this for me, but I don't know where to turn??

I think it's possible that a chiropractor caused my dysautonomia. I was having problems with dizziness and went to see a chiropractor hoping he could help. Within minutes of a neck adjustment, I felt my first heart racing episode. The symptoms escalated from there over the next few weeks and turned into full blown heart attack and asthma attack like episodes. I have not been right since -- I don't remember having any heart symptoms until this man "adjusted" me. I don't know if my original dizziness was POTS or something else, but I am pretty sure he added new symptoms to the list. After an MRI, it turns out I have two herniated disks, one of which pushes on my spinal canal and is impinging on a nerve root into my arm, as well as degenerative disk disease. Did he cause the herniated disk? I don't know.

Yes, Summer, this is exactly what I read that matched so well with my symptoms -- down the really weird neurologic ones. I like the Canadian criteria. These are very disabling symptoms -- I don't understand why in the U.S. it is taking so long for this to be taken seriously.

When I say CFS, I don't just mean fatigue. In reading about CFS, all the symptoms including the orthostatic ones ((and especially neurologic ones) are included within the disease. When they diagnosed CFS (in the late 90's), I kinda blew it off, like ok, you have no clue what is wrong with me so you're giving me a diagnosis that has no test and cannot be confirmed and is just this catch all diagnosis. But lately after doing some reading, it really does encapsulate all my weird symptoms and now that it is gaining acceptance and is being researched in a real way, I am wondering if this was the answer all along. Maybe it is a real disease?

Todd -- What type of Dr. does one go to to find out about mitochondrial dysfunction? (if "dysfunction" is the right word?) Do you feel any better since being treated?

I hope I did this right, I have never posted a poll. Lately I have been thinking a lot about my CFS diagnosis and wondering if the POTS symptoms are really just a part of this. Or are they two seperate entities? Or maybe it's the other way around-- dysautonomia causing CFS like symptoms. Just wondering what others thought.

Hi Alicia. I have no idea how to cope -- I am in the same boat as you and haven't found a solution, except avoidance. I am sensitive to ALL chemicals, alcohol, most medications. If I get a whiff of any perfume, paint, cleaner, anything my ears start to ring, I can taste the chemical in my mouth, I get dizzier (can't believe that's possible), can't see straight, and get very cognitively challenge. It's a nightmare. All products I use are unscented and even some of those SMELL to me! I am not sure how this ties in to the POTS -- maybe our damaged autonomic nervous systems just can't cope with what's coming in. I feel like just smelling the stuff poisons me, like it has entered my bloodstream. When I went for help in the early 90's for MCS I was told this was a PSYCHOLOGICAL problem. It certainly IS NOT. Just wanted to let you know you aren't alone.

OK I really don't want to exercise. It is pretty much torture. But two Dr's told me and I just read in Dr. Stewart's recent article that tight muscles will help with blood pooling issues. One Dr. told me calves, one said stomach muscles and I think Dr. Stewart was saying calf and butt muscles. Anyone here with rock hard abs still get symptoms? I don't want to torture myself for no good reason. When i get up in the morning, I have this odd sensation that my stomach is flipping, dropping, bleeding, pouring? -- I am not sure what the word is, it's so hard to describe, but I instinctually sort of squeeze around my waste and it helps the sensation a bit. Does anyone else get this? Does blood literally pool in your stomach -- is this what causes that weird feeling? This just brings me back to wondering if tightening the muscles would help.