Tammy

On average about 10 minutes, but sometimes I'm barely up and moving and BAM I feel really sick. For example, my husband drove me to the grocery store (can't drive myself due to heatlh) and as I got out of the van I didn't feel too bad - but with in about a minute as I'm walking through the first isle I started to feel horrible and had to go back out to the van. Needless to say he ended up doing the shopping instead and I stayed in the van with our daughter (it was so cold outside as in MN it's below zero so we take turns when we go places).

Tammy

Hi Everyone -

Well by accident, I've made a little discovery. Recently, I've eating organic brown rice with cinnemon and dried cranberries as a snack. I've noticed that about an hour after I eat it, I have a little energy burst and feel a little better. It doesn't seem to last very long, but was curious if anyone else eats brown rice (the kind you have to cook for like an hour) and has noticed any temporary improvement in energy level? Thanks for the input

- Tammy

Airborne and Emergen-C are wonderful! They taste great too which makes it so much easier to take. I know a lot of people swear by it. Sometimes my stomach gets a little irritated if I drink too much of the Emergen-C so will take breaks from it at times, but does seem to help fight off virus for the most part.

Completely understand how you are feeling! It use to be that I was just plain to tired to even think about it any time after 8pm. Now that my symptoms have progressed, I get severely ill immediately afterwards, so for the past year, we still try to 1-2 times a month, but have to try during a time that if I end up in the ER because of it, it has to be during a time that we can find someone to take our 2 year old while we race off to the Hospital. I'm pretty much terrified of "having a relationship" each time, but do it for my husbands sake. If I'm able to keep focused and not become "involved" in the moment, I don't feel too sick afterwards, but sometimes my husband is just too good at what he does So if your husband is willing to be a "30 second man" in that way and kind of just get it over with to fulfill his needs, you might get have less arguments -- I don't know? It does kind of take the intimacy/closeness feeling out of it, though.

I guess I'd just be thankfully that you still can and are able to have "relations" without having severe reactions from it at this point.... I never thought I wouldn't physically be able to and now I wish I would have just of enjoyed when he took interest in me instead of fighting it because I was too tired, as being tired is nothing compared to sudden extreme weakness, shaking, chills, throwing up, and feeling lifeless (like I'm about to die) afterwards.

Hope you and your husband can find a solution that works well for both of you.

Take care,

Tammy

Hi Angela -

It's wonderful to hear about efforts being made to educate the medical field about something that many of them know very little about (and I know there are millions of diseases out there as such, seems the MRSA infections that our familes are dealing with are also confusing to doctors as they all have their own way of trying to treat it but since this affects our family personally, I can relate to it's importance). As for the survey, here's my personal input:

1) What are some aspects of your doctors and the care they have provided you with that you liked/appreciated? I have yet to run into any doctor who really understands POTS, but ones that are willing to listen to my needs and understands how sensative my system is to drugs would help. Too often they think I'm dreaming up my side effects to a new drug and tell me that at how low of a level my dosage is, there's no way I could be even having side effects! And even advise me to up my dosage at that point. So I guess if they were more understanding to how POTS affects the entire body would be appreciated. Also, this is probably more personality based than something that can be taught, but being caring and willing to work with a patient for the long hall would be important to.

2) What are some aspects of your doctors and the care they have provided you with that you did not like/appreciate? Being told it's just anxiety and that I need to just learn to control it and use relaxation techniques and I'd be fine. When they keep trying the same drug over and over and over after I've told them each time that it's not working or my system isn't tolerating it! When they take my blood pressure with an automatic bp monitor and it doesn't register, they keep trying over and over until my arm is ready to pop, even though I tell them that because of my irregular heart rhythm and bp instability, they need to use a manual cuff and when they get a strange reading to realize it's not wrong!

3) What improvements would you suggest or value (even in the good circumstances)? More awareness that this isn't anxiety and realizing that when we say we aren't feeling well, it's not the same as many patients who come in with periodic problems, ie., colds, flu, rashes,etc. This is a daily, chronic illness that is like having a severe flu that flares up throughout each and every day!

4) What are things that you look for or would like to see in a your primary medical facility? This can be things like having wheel chair service, bench to lie down on so you don't have the floor, place to sit while you wait in line, etc.

Reclining chairs of some sort would be extremely helpful and also not having to wait so long to be seen as sitting too long without being able to lay down is extremely difficult and have almost left to go home as how ill I was feeling while waiting to be seen for an appointment. (Even if they would immediately take us back so we could lay on the examine table while we waited would work better.... maybe?)

Good luck with this survey, great idea

Tammy

Hi CardiacTec,

Reading your post was comforting to me, in that knowing I'm not alone with all those feelings of inadequacy and feeling like a burden to others at times and also frustrated with not being well enough to do all the normal things that many people take for granted... I guess sometimes this cross seems heavier to bear than what we can handle, and at times, during a weak moment and when my symptoms are at their worst, I've cried and asked God why me ( and than quickly realize that crying only makes me feel even worse - lovely!) but than will somehow compose myself and think of how when the cross gets more than I'm able to endure, somehow, between faith and family, I'm able to continue with the challenges and struggles hour by hour.

I hope that you are feeling stronger soon and remember that you are not alone in this - we are here for you and most importantly, God is with you every moment of the day.

Tammy

PS - Keep praying - it will give you the strength you need to accept whatever is in God's plan for you.

I notice that my symptoms can change without warning, in an instant. And then lingers a long time recovering Anyone else have that happen? I really don't understand why this is, as it happens without any triggers. Like today, I was doing somewhat okay, and then out of no where, bam, it hits me and suddenly I'm feeling like I'm going to throw up, chills, extreme weakness, pretty much felt like I was about to die. Now I'm feeling horrible and not sure what to do to help. I feel like my eyes are burning to, which I'm not use to having as often.

Thanks for listening.

- Tammy

Be careful which anti-anxiety meds they want to try you on, as I just saw my EP and he stated that POTS patients typically have difficulties with anti-anxieties as they tend to lower your BP, however, he stated that SSRI's do seem to help in 2/3 of cases. I personally haven't had much luck with any form of medication, but this is just was my EP was explaining to me as he wanted to try me on Zoloft again.

- Tammy

Those are also a few of my common symptoms and some. All these strange sensations/symptoms that seem to come and go throughout the day are not fun to deal with but are very real and a part of Dysautonomia.

- Tammy

So sorry to hear your feeling so badly. For congestion, here are a few "natural" techniques that provide some relief. If... and I'm sure that's a big if for us with POTS, you can tolerate warm temperature, running a very hot shower to let the bathroom steam up and then sitting in the bathroom for a while, or as long as you can tolerate can provide some relief. Or using a steamer/humidifier, also helps some. Drinking lots of vitamin C, we use the Emergen-C packets that you add in to water 2 to 4 times a day and also take Echanacea caplets (the roots variety, as the ones with the whole plant aren't as helpful). And like you said, resting as much as possible and drinking extra fluids is the best you can do while the virus runs it's course. Also, I haven't tried this myself, but have seen the commercials, for a product called Mucinex, that apparently helps eleviate mucus... just don't use the Mucinex-D, as that would have a decongestant in it.

Hope you are feeling better soon.

Tammy

Caffeine is like poison to my system. Would love to have a cup of coffee every now and than, but just not worth the tachy, adrenaline rush, weakness symptoms within an hour of having it.

My mom was sick freqently growing up also and I got use to hearing the BP kit beeping in the middle of the night when she was feeling sick, even though she didn't say how she was feeling, I knew something wasn't right. She never really explained to me what was wrong, as I don't think she really knew, but would just say that "mommy wasn't feeling well and needed to lie down". I also worried about her often, but I think it made me a very compassionate, caring person.

I'm so sorry your feeling so bad right now, and I really don't have any advice on what may help, but just know that I totally understand how your feeling. It's strange how sometimes really weird symptoms will present themself and then with time go away for a while and another unique symptom will be more prevailant. Sometimes I've had times of spinning feeling/nausea, but usually when that's happening, my BP is extremely low. Usually if I get a good few solid hours of sleep (which takes a few days when your feeling like your spinning) this will go away for a while again.

Take care,

Tammy

I have major problems with exercising, typically afterwards also, but also at some point during exercising I'll get very lightheaded feeling and weak, which is usually why I stop and take a recover time before trying to exercise a little more. Sometimes my heart will start to race about 10 minutes after I exercise and will get nauseous and chills, etc. Even though I have severe exercise intolerance, my EP still recommends exercise as I'm able too. Most days though, just running down stairs to do a load a laundry is all the exercise I can tolerate. I think for some reason, exercise releases adrenaline into our systems and our system just doesn't know how to deal with it appropriately.

Hope your feeling better once your well rested again,

Tammy

A while back I wrote about my concern that my daughter who is 20 months old may have MRSA. I wasn't sure at the time, but tests have come back as MRSA. It is the community acquired version, so it is presenting itself as boils all over her body. We had been in the hospital with her for vancomyicin IV treatments since her sores were pregressing so fast and with how young she is. She couldn't complete the treatment though, as she had a severe allergic reaction to it, so is now on oral Bactrim, ointment for her sores, ointment for her nose to try to eradicate her as a carrier, and Hibiclens baths. She is slowly healing, but her 10 day regamine will be done in less than 4 days, and since her spots of not yet all healed, not sure if they will start to spead again once she is done with them or not. I have a boil myself (as of yesterday) and my husband has been running a low grade fever for the past 8 days with fatigue, but our doctors aren't too concerned with that right now. They just want us to get tested as MRSA carriers at some point. What I don't get is why this happened. We have good hygiene, don't use antibiotics (I think I had to take them when I had pneomonia in 99, and I made sure to take them all as prescribed), keep our house clean as possible (with my low energy level, at times, it can slip some but surfaces have always been clean and well kept, just not overly organized!), and due to my illness, I am home like 99% of the time, so have very little community contact. It's just so frustrating and somewhat hopeless feeling with all I've learned about this awful disease. At this point, only 1% of the population of the 30% of the population that carry staph infections are the MRSA form, but from the view of the doctors at the hopsital, they made it sound like these infections are on the rise and that it's a sign of the times. All I do know is that all the extra clothing washing, obsessive hand washing, disinfecting (found that very few disinfectants are even valid against killing this strain, but bleach at a 1:10 ratio is suppose to help), and medication dosing is so draining, but I just want our family to survive this possible "killer" bacteria.

Thanks for letting me vent about something other than my typical POTSY symptoms

Tammy

Thanks for all the helpful advice and the links were also very helpful. Definitely put my mind at ease

Tammy

Hey, I've had that happen! Isn't it the weirdest thing.. smelling something that isn't there. I get it when I take Tylenol. I'll start to smell a metal sort of smell and than I usually get a headache with it. If it only take a 1/4 of a tylenol, it doesn't happen, so for me it has more to do with a reaction to tylenol.

Hello! I'm just curious if anyone here has dealt with skin infections also. My 20 month old daughter may have MRSA staph infection (waiting for results from the lab) and it sounds really contagious. Her pediatrician said that we need to bleach her clothes and bathtub, towels, etc. and keep her open sores covered until they are healed. Our pediatrician also said that MRSA is increasing and has become community wide, rather than just something contracted in a hospital setting, which would be the case with our daughter as she is home with me, not in daycare, and the only place we take her with to is our church! So now, my question is, since her dr. also told us to keep clear of the chronically ill, those with compromised immune systems, and the elderly, how am I going to react to this if I get it. I'm plenty worried about my daughter, but I'm also somewhat worried about myself, and my elderly parents and disabled brother as we had seen them this past week not knowing she had something like this. Man, it sure would be nice if we'd have known this was going around, so we could have addressed it when her first spot appeared two weeks ago. We figured it was just a few infected/plugged pores.

Thanks for any input or knowledge with MRSA

Tammy

Hi LindaJoy,

I think if you have any doubts or questions as to tests they have or haven't done, bring it up to them at your next consultation/meeting with them while you're still at the Mayo. I could just kick myself for not doing so in 2001 when I was at the Mayo. I left with so many questions and really didn't feel like they made any progress in diagnosis for me, and if I could go back, which now with a toddler at home, it's impossible to leave without any daycare, I would pursue other tests to figure out what's really going on with this in hopes of some guidance in what to do that would actually help me! Don't give in until you have the answers you want and feel comfortable with.

Take care,

Tammy

No you're not crazy, but sometimes I think the doctors are, when they think that the meds they prescribe are going to "magically" help us and when they don't, they think we're crazy! I've got the same thing going... as my EP is specially listed here as a specialist with Dysautonomia but when I have extremely bad side effects from the beta blockers he's tried me on, he's tells me I need to learn to cope with it better! AHHHHHHHHHHH, I could just scream with frustration, but I'm too weak to So I've kind of taken a break from even trying more meds as my EP doesn't seem to think my reactions are real, but only in my head, so I'm pretty much on my own trying to figure out ideas of what might else help me naturally.

Take care,

Tammy

I know your frustrations and feelings of hopelessness also. I've been "severely flared" with symptoms for over 13 months and sometimes wonder if I'll ever have good days again, but when it first started, I was very sick for the first 2 1/2 years and than had more functional days for two years until major stress in my life caused another flare up 13 months ago, so I'm hoping in a year I'll be back to functioning at a fairly toleratable level again. I'm unsure if I'll get back to my previous level of functioning completely as from what I can tell, this flare up made my symptoms more severe than when it first started and have felt close to death many times, but trying to be hopeful that things will eventually get better again. Try to not stress about being sick or give into those hopeless feelings as they really do nothing to help and may actually slow your recovery at whatever level that may be

God bless,

Tammy

I've made the mistake of telling my husband I was feeling pretty well at the moment and then we decide to do something, like go visit his parents, and then on the way, I start feeling super sick again, and I don't have the heart to tell him how I'm feeling and I suffer it out while at his parents and end up really bad by the time we get back home and takes days to recover. It's so crazy how this is such a moment to moment illness, not day to day at all!

- Tammy

Yup, I'm with Quiet Spike on this one... hopefully you'll feel up with enjoying your birthday, but if not, don't push yourself, as you can always declare another day to celebrate it. I was so sick on my birthday this year, but I was determined to go out to eat at least and it just made everything so much worse.. it was 97 degrees outside and I should have known better to just stay inside!

God bless,

Tammy

Hi Amber,

I'm not sure what the difference is either, but I also have both listed on seperate event monitor results. My EP doesn't seem overly concerned other than him feeling that a Beta blocker would help me if my body could tolerate it, just haven't found one that works yet. Hope someone else can give you specifics.

Tammy

Hi Jess,

I think what your thinking of is listed on the main POTS page http://www.potsplace.com/what_to_avoid.htm and is says a little about anestetic being a possible problem for some with POTS. It really varies person to person. Even my husband who has no health issues for the most part, had a hard time coming out of the drug they gave him for his colonoscopy, it think it was Versus or something like that, and he wasn't really completely under but he just couldn't completely wake up either. They do have reversal meds for this and should help if there's a problem. I'm not a doctor and this is only from what we have experienced.

Tammy