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Sue
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Ok, sorry guys but here goes.

1. I sleep so heavy, there have been many times my husband has woken me up fearing that I am dead. Kind of blunt/sorry Do you sleep like this?

2. For someone who sleeps so sound, why do I wake up feeling as though I haven't slept. Often feeling more tired than when I went to bed.

3. Are you numb?? I have numbness on my one side. hand, arm, right side of chest, neck. Sometimes left hand and arm not often.

4. Do your symptoms hit you like a ton of bricks?? I can be half way decent and the next minute I am on the floor!!

5. Concentration problems? I can totally forget what I am talking about sometimes. especially if interrupted by something.

6. My vision is extremely sensitive lately. the white snow and sun extremely hurts my eyes.

7. Have your meds changed your personality?? Or is it the illness?? I have always been a get up and go type/always in a good mood/really hard to make me angry. Lately not so true. My daughter asked me the other day had she done something to make me so angry. I hadn't even noticed I was acting different??

8. Do feel a heaviness over you. I don't know how to explain this one.

9. When you have symptons, are you spin dizzy?? or walking in a rowboat on wavy waters dizzy?? I am the later, sometimes I am afraid to put my foot down because it feels as though the floor is moving.

10. Does your heart start pounding for no reason??

I am sorry so many questions, I actually have alot more but will only burden you with these right now. I am trying to understand what is going on with my body. It is so hard to understand and I am totally aggravated. I want my life to be as it was and even though I am sure that isn't going to happen I want to try and find somewhere where I can at least function half way normally throughout my day.

Thanks so much

Sue

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1. I myself am a light sleeper

2. I dont get much "rest" from sleep either

3. my numbness is usually in my hands and feet

4. Absolutely!!! split-second change ;)

5. That's called "brain-fog" it is a real medical symptom- dont feel bad ;)

6. eye sensitivity is a common symptom also - mine just effects me during migraines

7. I believe (for me) that the illness is what has changed me! My meds arent mind altering drugs- the depression and frustration is tough to handle! Also another symptom I've been told is a mild "mood disorder" My mom says she can tell when I'm going to be sick because my moods are all over the place a couple days before!! ;)

8. If you mean like ...your body feels too heavy to carry sometimes then yes...mostly my head.I describe it as laying on the floor and lifting your head and holding it that way! My neck gets unbelievable pressure and that's how I describe it just a "heavy feeling"

9. On mild days I feel "floaty" like floating on water -On bad days It's like everything around me is spinning like when we were kids on a merry go round. When I lay flat I feel like I'm rocking in a hammock-it usually stops when I relax completely

10. YES!! tachycardia for me is constant but when it gets real bad I feel like my heart is going to jump out.

Dont feel bad about asking anything!! It's the only way to know!!!!!

Deanna

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Sue, you sound a whole lot like me. I have the "wavy" dizzy but also the "spinny" dizzy. Here is a good "dizzy" website: http://www.opt.pacificu.edu/ce/catalog/COP...7282/Dizzy.html

My husband, too has thought I died in my sleep! I will wake up with him actually holding a mirror under my nose to check and see if I am still breathing! I have sleep apnea so most of the time I snore - guess it scares him when I don't. I have left arm/shoulder numbness and I go numb from the waist down on my left side if I lay on my back. Confusion... Oh boy! I have days when I can't tell you what my name is. Luckily my Hubby understands it is a "brain fog" day and goes with it. Yeah, my sx's hit me like a ton of bricks. I have times when I just plop on the floor in a store - I act like I am examining the botton shelf. Vision. Well, I have days when I am sensitive to all light and days when I can't see to read or write. I also seem to be losing a lot of my fine motor skills. Personality change? Hmm... probably the illness has changed me. I now look at things differently. I'm sure I went through a "mourning" period when I said goodbye to my old life. I have had to readjust my definition of normal. But now I have learned to like the new me - haven't really decided if new is improved or not. But I am different.

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I'll respond for my wife.

1. She does have periods of deep sleep, but many times she can't sleep at all.

2. She rarely feels "well rested" even on nights when she slept soundly.

3. She has some numbness, but she doesn't complain about this much.

4. A ton of bricks would be an under statement.

5. BINGO. She has concentration issues all the time. On days when she has what has been termed "brain fog" out here. She can't do anything including watch TV, read, etc as her brain can't seem to sort through all the input.

6. Wow, she actually called the doctors on this a couple months back. She couldn't handle the white from the snow outside. I caused severe problems basically triggering her POTS with pressure and heart beat issues as well as confusion, etc.

7. I think it is the illness. I also think some meds cause different side effects and other issues that may not even be documented as a side effect though as well. This is just my personal opinion.

8. Yes

9. Exactly the way my wife feels. She even used some of the same analogies. One that she had that hit home for me was she asked me about the feeling you have when an elevator comes to a stop sometimes with your stomach. She told me she has that feeling all the time. That one hit home for me. And then if she actually rides an elevator....

10. Yes, this is related to the condition.

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Hi Sue! Happy to help! I know how frustrating it can be to try and figure out where you stand in all this mess, so here goes:

1. I sleep pretty lightly, but only since becoming a mother. I used to be a fairly good sleeper (not too deep, not too light)- but now one little sound and I'm awake for an hour.

2. I also wake up feeling UN-rested- drinking a 16 ounce bottle of water an hour before I even get out of bed and taking my Florinef then as helped a LOT.

3. At the beginning I had some tingling/numblike feelings in my arms which has disappeared as my control over this illness has improved.

4. Yes, one minute can be fine and the next minute you just want to crawl in a hole.

5. I have major concentration problems, I cannot focus on anything for very long, and am quite forgetful for a 22 year old. It has made college an extra challenge!

6. My eyes are always sensitive- I wear sunglasses outside and try not to look at the snow ;) .

7. When I first started Florinef I felt like I had PMS all the time, and beta blockers made me depressed. BUT these symptoms leveled out over time and my positive attitude has emerged...the temper is just genetic, lol!!

8. Heaviness? Well...there have been time when I feel like I weigh 500 punds and i just can't drag myself another inch- not sure if that would be considered heaviness or not.

9. My dizziness is more like lightheadedness and imbalance- I used to describe it to my doctors like it's as if the floor is moving (tilting back and forth) and I can't get my balance- but things don't spin.

10. My heart pounds for no reason, namely after a big meal, or when I lay down to go to sleep I can feel it.

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1. Always have been a deep sleeper. When I had a 24-hour Holter monitor test done when I first had this latest episode of persistent tachycardia start last summer (I call my POTS blowout) and was at the hospital it showed a high HR of 150+ and a low of 30 over 24 hours. I can only imagine the low HR was when I was sleeping...at least I would hope! I was told this was completely normal. ;) The only time I have had trouble sleeping was on Ativan and that included sensory sensitivity to light and noise...things I'd never had before except sensitivity to blinking lights which I have noticed for a few years and still don't know why. The sleep problems on Ativan I would describe as wired but tired. On Xanax I do not have that problem and I am back to sleeping pretty soundly except maybe a little less sleep right before/around menstruation. Sometimes I feel sensitive to light/noise but usually on my foggy headed days when I am at my worst. Sometimes I call it sensory overload.

2. It takes me a while to "wake up" mentally in the morning...like my brain takes longer to wake up but my heart takes off as soon as I get out of bed. I think I've always been this way though even not on medication. Always a deep sleeper (as above with the exception) and always that shot of adrenaline in the morning when I wake up. I think either the tachycardia is more pronounced in the mornings now before I take my beta blocker or I am just paying more attention to my body and am more aware of it (??)

3. Have had some facial numbness before POTS blowout last summer and then some arm/hand numbness during, but mostly pain and aches...back aching between shoulder blades, lower back aching, and leg aches and leg tension terrible at times. The only real numbness I get now is if I lay in a wierd position I can wake up with a numb shoulder or arm and always if I sit with my leg(s) crossed and not outstretched they will invariably fall asleep quickly.

4. I do not pass out if this is what you are talking about. I think I have mild symptoms all day long and they get worse depending on how much activity I do but not like I'm good and than BAM I'm bad. Before I was diagnosed last summer after something triggered full-blown POTS, I would say I'd be clipping along in energy through the first half of the month and then yes BAM, like somebody pulled the rug out from underneath me and I had no energy and have the feeling of being weighed down by gravity feeling described below before my period. Does anybody know if there is a hormone connection and if so what and why? (fluid retention? if so, you'd think one would feel better before period then when retaining?)

5. Sometimes trouble with concentration. For me usually it is because my mind is going faster than I can sort it out...some have described it as a slow crawl...I think honestly I've had both.

6. Vision problems -- see above. I had the light sensitivity just the other day..it was a bright sunny day and I was trying to get some errands done but felt so bad I shouldn't have probably been driving. Also, I find I am getting night blindness I think. In the dark, everything looks smokey (? sp. smoky) and hazey (? sp. hazy)...I don't like to drive at night because I feel disoriented.

7. Meds changed personality or illness? Good question. I've always been a person who was on the go, go, go, but also one that could get upset by something and have a hard time letting it go...have to talk/talk/talk about it. I think I'm the same old me except the falling down tent of a body doesn't want to cooperate with the go/go/go and I still sometimes get stuck on things that bother me even though the medicine helps to calm my body down physically. So I guess I would say I'm still me even on Xanax and the beta blocker except that I do think I have more blue days than I ever have in my life and I don't know if that is medication or acceptance of the illness and change in functioning...who feels good mentally when they feel bad physically? (and honestly vice versa I suppose could be true). I have worried my meds cause a little bit more of the down cycles than I have ever had but I think the "hormonies" are playing a role too...which ones and how to fix them?

8. Heaviness - The closest thing I can say about this is that I have what I call a "passing out feeling" sometimes for days before my period...sometimes it seems related to low blood pressure and other times not...it is a strange feeling in my head and the best I could describe it is being weighed down by gravity...like my body is fighting gravity to stay upright. I've never passed out though.

9. Dizziness - I've had mere seconds-long episodes of true vertigo. As far as a dizzy feeling, I complain and say I feel dizzy but it isn't true spinning, etc. it is that anti-gravity feeling I get (see above). (like when you were little and would spin around and then try to walk straight and fall to the side...well I feel that way but I don't walk to the side...just feel weighed down by gravity). Have you had your ears checked for inner ear disturbance? Not to say it isn't a common symptoms of these disorders because it is, but inner ear could be an aggravating factor.

10. - Heart pounding - My experience was my heart racing upon awakening in the morning and it would do that all day long sometimes or stop abruptly during the day just to reappear for no reason at rest later in the evening, etc. I was tolerating it. The heart pounding started after taking Ativan and when it would wear off I would have the worst heart pounding flipping sensations I've ever experienced in my life. Same thing with Atarax and same thing non-stop with a tremor in my spine to boot after taking 1 dose of Lexapro. Now I am only aware of a little heart pounding in the evening when I relax on the couch to unwind and I attribute it to the beta blocker wearing off and/or the amount of activity I pushed myself to do that day. I find I will move my body into whatever position I have to in order to not be aware of that heart pounding feeling including moving from resting on my hands if I feel my pulse strong and fast...I just adjust position and ignore it.

Don't be sorry for your questions and you are not a burden. For understanding, you have come to the right place. It is aggravating and I too want my life to be as it was...don't rule out that it will never happen...functioning halfway normal is what we all will settle for. You are not alone! Realizing that was the single most beneficial thing for me that I can't even explain it. I'm so glad that you found us because I know how it feels to feel alone in this experience and know you will find peace of mind here as I have.

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Welcome to the forum, Sue. It's been said before, but checking in with folks here is the best/healthiest thing you can do for both body and soul right now. So keep talking, reading, sharing, and asking. You won't find a more remarkable, supportive group of people. I'm new here too, and already feel at home.

I have POTS (the kind without blood pressure highs and lows) and I've had it since adolescence--I'm 42. I'm a terrible sleeper (tho a little better the last few weeks b/c I'm taking Claritin at night before bed). Problems with insomnia, and I don't sleep deeply. FYI: my holter monitor showed low hr of 67 at 7:30 in morning, just before awakening, and high hr of 167 at 11:30 at night. (This slayed me because I wasn't exercising or even walking or anything. When the heart rate reportedly spiked, I was sitting on my bed reading my husband my "holter diary" for the day--and I was laughing really hard because I wrote about falling asleep at my desk!)

Lots of people report mornings as being the hardest time of day; I guess that's my experience too.

I have constant tachycardia--except while I'm lying down or sleeping. Lying down it's in 80s or 90s; awake sitting or moving around, it's 105-155 typically.

Only recently, in past 5 months, I've been awakening during the night (or in the morning) with numb hands and/or arms. Once my right hand was so "dead" that my left hand could feel that it was touching the right, but the right couldn't sense that it was being touched. That was about the creepiest thing ever!

I start saying something and then I forget why... I lose focus, I lose words, I definitely have a hard time talking sometimes. I can't concentrate at work these days; could be the POTS, could be I'm just distracted with big issues in my life right now.

I'm not on any meds: just high fluids, high salt, and compression hose. (I'm undergoing fertility treatments...)

Heaviness, sure! But the first time I put compression socks on 6 weeks ago, I felt I'd lost 50 pounds; walking got soooo much easier! Try em!!!

It's challenging to come to terms with all the different ways our bodies don't respond to stimulus the way they're "supposed" to--but on the other hand, getting a diagnosis can be an enormous relief (as it was for me). I think the trick is to treat those symptoms that are most problematic for you and try to let the rest go. Keeping your sense of humor--and not being hard on yourself if there's something you can't do--are also key! Take good care!

Merrill

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