AllAboutPeace

I just say "I'm doing ok" or "pretty well the same", then I quickly change the subject ("what's going on with you?") because it's really just depressing for both of us. We really are conditioned as a society to say something positive in response to "how are you?", so it feels unnatural to respond with anything but that. The worse I feel, though, the more likely I am to 'lighten' the conversation with humor. My closest friends and family know my humor trick and they always follow with more questions. Instead of asking how I am, my in laws have gotten to the point where they say "so you're feeling stronger/better"/ "getting better all the time"/ "you look better than I've seen you look for a long time". I know they don't want a response and that is what they need to believe I guess, so I just let it go.

Since the onset of Pots, I've had some skin issues that I've never had before. When I was seeing a surgeon a few days ago, he told me that I have Dermatographia (http://www.mayoclini...graphia/DS00755 ). So, I know it's nothing to worry about, but when I look at all of the things that have come up, I'm just curious if this is a Pots weirdness or something else. So: - dermatographia - cold urticaria (hives that last for over a week from being cold) - in the past few weeks, I've noticed that I have some small circular spots on my upper arms/shoulders that are lacking pigment - when sitting in direct sunlight with legs covered the entire skin area will turn red and inflammed with large white spots (looks like someone put a stencil over my legs with circles in it and sprayed it white). - a few brown patches on the side of my abdomen - I also have had excema for many years, but for the most part it is seasonal (worse in cold weather) The doc also was quite adament that I tell the dentist that I have cold urticaria because that is definitely something he should be aware of. I was pretty foggy brained when I was talking with him, so I really didn't get why he was so concerned. He also said that I should alert anyone at the hospital when having procedures done. Has anyone else been told this?? Is it possible that Pots is causing these various inflammations/ issues?

Hippychic, I did have those symptoms earlier on in my illness, but they have tapered off over the last few months. I was actually just wondering whether this med would have worked when everything was in the extreme phase for me or if those things needed to settle on their own first - of course I'll never know, but I wish I had tried. The key changes I would say have been with the extreme fatigue, ability to be upright longer, and some exercise tolerance. I just saw HyperPots response, so hmmm...it may well have helped. When I finally tried it, it was partly based on the fact that IV saline was very effective for me, so I thought I might be someone who would benefit from the volume expansion.

I know exactly what you mean!!! ((hugs)) I applied in May and was approved a few weeks ago. It definitely helps to take off some of the financial pressure and it's there for as long or as short of time as you need it. I hope this means that POTS is becoming more recognized and that those who need LTD will be approved without the long struggle.

I just wanted to give an update after 5 weeks of Florinef, for anyone who may be interested or considering trying it. I had lots of hesitation about starting meds and after 10 months of very little to no improvement (and being housebound, exercise intolerant, no good days, etc), I tried Florinef. I started with 0.1 dosage daily. Week 1: I felt some chest flutterings at times, some extra dizziness, some abdominal discomfort, and no immediate improvements. On the fourth day, I had a brutal headache, so the next day I took 1/2 pill, then bumped back up to 0.1. I've not had a headache like that since. By the end of the week, I noticed a slight improvement in the extreme fatigue (i.e. I found I could do a little more without being flatout and needing my head supported). Weeks 2-3: no noticeable improvement beyond the initial improvement in the level of fatigue. I was able to start doing short walks up the street and noticed I didn't have to take as many squatting breaks. I began to feel quite bloated all the time and weight gain. Week 4: I switched from 0.1 to .05/day to see if it would help with the bloating - which it did. I felt ready to try exercising on the upright stationary bike as opposed to the recumbant one (which I could only ever do 6 - 7 minutes maximum at a slow and easy pace). I was shocked when I could do 15 minutes at a good pace!! Amazing! I was dizzy afterward and had to go to the couch but not to the extreme that it was before. Also, before, my heart would react with irregular rhythms, etc., but after laying down for a little while and some water and salt, I was ok to get up again. A few days later, as I was on the bike, I started to feel a strange sensation and after I figured out what was happening - I realized I was sweating!! Amazing...again!! A normal physiological reaction! I've also been able to do very light weight (2 1/2 pounds) arm/back exercises which would have been impossible for me to do before. My blood pressure is coming up to good levels. Week 5: I drove tonight! A short drive to my parents house and back, but it felt good. I was well hydrated and had napped today, so that helped. I was not able to drive at all before this due to dizziness, inability to process information, visual floaters, etc. so I never felt it was safe. I'm definitely not ready to start doing it all the time, but for the moment it is a huge accomlishment. I'm losing weight and the bloating. So, I know I still have a loong way to go and I still feel "potsy" all the time, but at least now I can do some things, too. Two weeks ago, I felt like I was slipping into a big dark depressive hole and couldn't see a light at all. I felt like a total stranger when I looked at old pictures of myself, so the glimpses of normalcy are huge for me right now. Also, I am kind of kicking myself for not trying this sooner... I only wish it helped everyone else too.

Sheila, Sorry to hear that you are going through this. Did they give you any specifics on how it was abnormal? Do you have to wait long for the stress test?

username: I'm sorry to hear that you are having all of these issues with no answers. I was hesitant to mention this because you have probably been all through it, but are you sure you don't have any issues with gluten? They symptoms for gluten sensitivity/intolerance are soo broad and could cover many of your symptoms. As I was reading through your post, I couldn't help think of a friend of mine and what she had been through. I know that you said that you didn't test positive for Celiac, but when I think of my friend and her symptoms (fatigue, acne that wouldn't clear up, gastro issues/bloating - those are the ones I know about), it sounded similar. She did not test positive for Celiac either, but she switched to a gluten free diet and her symptoms cleared up. She is sure now that was her issue. On the occasions when she has even a little gluten, she gets gastro symptoms right away. Also, her daughter tested very positive for Celiac recently, so it would make sense that at least a 'sensitivity' exists with her despite the fact that her test came back negative. My niece was also diagnosed recently, but she only showed borderline in her bloodwork. Because of her symptoms, they opted to do the biopsy anyway and it confirmed Celiac. Her mother was convinced that she had many food allergies and had taken her off all milk products, etc, but when she switched to gluten free, she discovered that she was actually ok with everything else and she's back to eating a varied diet (minus the gluten) without all of the nasty issues. It has made such a huge difference for them, but in both of those cases their initial tests weren't indicative of the problem. I hope you find some answers soon...

Yes, me too! I feel like this every morning when I wake up. It's like I'm coming out of hibernation and that everything has slowed to a near standstill and it takes a long time before I can actually get up. I also feel the urge to shake it out, but like you said, Naomi and yogini, the intense weakness prevents me from actually doing that. At other times when I've felt like this through the day, I have actually popped on the recumbant bike to ever-so-slowly try to get the blood circulating. I usually only last a minute or two because of the low energy. I'd love to know what is behind that.

Have you come up with anything in searches for her name on the internet (rateyourMD kind of sites) or on here (dinet)? If she really does see that many POTS patients, you would think that she would be discussed in the various POTS circles (especially if she is good). I agree with others who've said to be cautiously optimistic.

Pumpkin, I haven't had any experience with this myself, but I did a quick search for Petechia on this site and lots of info came up. If you haven't done a search yet, you should try it because it looks like others have experience the same thing and/or something similar. It may be helpful It's nasty and worriesome when we are hit with something new when our bodies are already a mess.

Hippychic, I hope things go well for you. I haven't had dental work done since the onset of POTS, but I have had local anesthesia for a biopsy and everything went ok with that for me. I was actually surprised with how well my body handled it (and I couldn't handle much of anything at the time). I was still using a wheelchair at the time for appts and I had my usual 2 day recovery from the outing, but the anesthesia gave me no adverse effects. I think the antibiotic is a good idea to help with the infection as Ashelton mentioned already, mouth infections can be bad if untreated. Maybe you'll be one of the lucky ones among us that feels better when taking antibiotics. It does have that effect on me and that effect has been talked about on different threads. I hope everything goes well & I'm sure it will be a relief for you to have it done!

You know you have POTS when... You decide to muster the energy to tag along for a short walk up the street with the dog, only to have your family laugh hysterically because everytime the dog squats, so do you. You are unfazed by the following... You're on a big outing (to a drug store of course) looking for support hose, (which means you are actually sitting in the prescription area with your feet up while others look) when your mother and the pharmacist find them several aisles away. Instead of bringing the hose over to you they roar across the store "HOW MUCH DO YOU WEIGH?" You have no choice but to respond because getting up and passing out with a full bladder isnt a better option, so you roar back your weight despite the fact that a small crowd is now gathering. Next reply is "WHAT???" followed by "YOU CAN'T WEIGH THAT MUCH!!" Your son scrolls through caller ID on the phone to look for a friends phone number and it takes forever to get through all of the calls from doctors, hospitals and clinics.

I can't even believe it at this stage, but I was approved for LTD!! I'm not surprised based on my current functional ability, but I just expected more of a battle because of the nature of POTS and the fact that it is generally unknown. Almost every case, for various illnesses, that I've heard of requires an appeal and lots of proving your illness, so I'm not really sure what happened here (but I am thankful for whatever happened). I had two docs filling out the forms for me and neither one of them has any prior experience with POTS, so I wasn't confident that they really knew enough or were interested enough to advocate for me (maybe I under-estimated). Realistically, it would be tough for them to give definitive answers. They both prepared me for rejection. I did send some good articles along with the forms as well as detailed information about my symptoms. So, I'm not sure if I just had the right person on the right day, but I hope this will be a positive thing for others who need to pursue this down the road. So, the good news is "I was approved" so that will help take off some of the financial pressure and hopefully help me to feel less like a complete burden on everyone. And the less-than-good news that goes along with being approved is that psychologically I feel like I'm on a downward spiral. It's ridiculous really because my condition hasn't changed, but I feel like -"ok, so everyone seems to agree that I wont be getting better anytime soon". Anyway, for those of you going through various stages of this process now, I hope that you will get your good news soon...

Your comments reminded me of a video that I watched last month. I was watching some on-line excerpts from various autonomic conferences and some on ME/CFS (because of the overlap in symptoms with Pots patients). In one of Dr Cheney's video's he mentioned that he had some ME/CFS patients that actually held their breath (one of them for as long as one minute) and this showed no de-sat at all on their finger pulse - ox, suggesting that pulse-ox readings may not be accurate for some of us. I would have to find it again to listen to his explanation of "why" that happens, but what I have in my notes is he said there is "no cellular saturation" (perhaps related to poor peripheral circulation ??). I thought that was really interesting given that many of us experience those breathing issues, but it doesn't always translate to the pulse-ox reading.

I have this too and I never had it before POTS. When I roll over in bed I creak and crack from head to toe and I notice the popping/cracking in my neck when I turn my head through the day. Could it be related to a circulation issue (tissues around the bones)???

Thanks, I'll continue to keep an eye on it. Unfortunately I have a doc who's not big on follow up (even after my out of area EP/Cardiologist called him to make sure he is comfortable with monitoring me - until I see her again in Nov). He wrote a Rx for Florinef; gave me zero info about it or follow up appt; wrote that I could adjust the dose from .1 to .6 up to 2/day and sent me on my way. All I can say is - I'm very thankful for this group and the internet because I'd be flying completely blind without it!

Hi Batik, If this helps - I am one of the people on this poll that can't exercise and I don't have ME.

Angela, Yes, I have also had the message "irregular beats" showing up at times on my BP monitor. I've gone to take my bp when I'm symptomatic (i.e. feeling irregular beats/ chest fluttering) and it will then show up - so in my experience it has been accurate. (plus I have never had it show up unexpectedly). My docs also mentioned that if you happen to catch your heartrate accelerate quickly that can sometimes show up as an irregular beat (although it is really just jumping quickly and it can be hard for the monitor to keep up and register it as a regular rhythm). I think it's worth making a note of and discussing with your doc if you are feeling symptoms at the time - but I consider this a part of POTS for me.

Thanks, Hyperpots8, it's good to know that your doc isn't concerned about it. Bren: I know...I waited so long to take meds because I felt like I was concerned about adding anything different to the mix. Brady's and irregular rhythms feel worse to me than the tachy. I think it is because most of the time, I can control the tachy by sitting or laying down. I feel terrible with the lower brady's. It often makes me cough or yawn, feel weak/nauseous, and have a chest heaviness (discomfort). When I got on the bike I barely had the energy to move my legs at all, but I just thought it might help. Still feeling extra awful today.

Does anyone have issues with their resting HR lowering over time? When I was first diagnosed my resting rate was in the 60's, then it started creeping into the 50's- first high 50's, middle and low over the span of a few months. Every once in awhile I'd see the 40's, but now they are becoming more frequent and this evening it was mid 40's. I'm really not liking this trend. I popped on my recumbent bike to perk it up a little, but that only bumped it up a few beats and has no lasting effect. I'm quite sure my HR isn't lower because of my excellent physical conditioning...lol Anyone else experience this or know what might be going on here - other than just a messed up ANS ?

My feeling is that it has to do with adrenaline. When your body has to get through something (be it a crisis / workday / outing, etc), adrenaline will kick in to give you that extra boost to get through it, but on the week-ends you don't need it so you may be having a rebound reaction/recovery from taxing your body all week. I'm not able to work, but I always have the crash after my outings. Sometimes it's immediate, but if it's been a bigger outing or required more exertion, I will actually be ok that same day (presumably because I'm still feeling the adrenaline), but the next morning I will be unable to get out of bed and it wipes me out for the whole day.

Great news!! I'm glad to hear that you've found something that works

Hmmm, interesting! Thanks for posting this. Based on the last statement alone, I think it would be worth having this in your back pocket when going to docs. I'm going to make sure my doc has a copy.

I find this really interesting re: obstructive vs central. I usually don't wake when I'm sleeping on my side - it's only on my back when I wake with a choke - so that would look like obstructive. But, like you, my neck size is smaller than the average and I don't snore, so no one hears me stop breathing. I have had the distinct feeling that my brain just forgets to send the message to breathe, but I can't explain why it seems worse when I'm on my back (unless it's a combination of central/obstructive). Also, I was sitting up at the computer one day when I tried to swallow and my throat just locked up and I couldn't breathe until I forced a cough - so I think that would indicate there is a central issue and sometimes the brain messages are just not getting through.

I watched this video when the link was posted and also found it really interesting. I talked to my doc about it and he ordered a home sleep study because there isn't a lab close by. So essentially they were looking for apnea, but it also measured heart rate. I have yet to see my doc to get the results, but I don't think it will be super helpful because I had a very wakeful night ( and without the benefit of monitoring in a lab, I think it would be difficult to distinguish from the data whether I was asleep or awake) Bananas, I'm glad this seems to be helping you! I think sleep is half the battle for some, if not all of us. Do you have issues with brady's or hypotension? (I know he addresses that issue, but I'm just curious My resting heart rate is consistently 50's but has been 40's lately in the evenings before bed - and I know it dips lower when I'm asleep (in between bursts of tachy).