Tammy

So I have a minor virus, basically a sore throat for the last week and mild sinus stuff, however it is causing insomnia more than normal, and without taking an Ambien I would'nt have slept the 3 hours I got last night. I haven't been able to nap either as my adrenline is running on high and my heart rate is increased. I do not have a temp either. Anyone else have this with minor virus'? I'd expect this from a nasty virus, but not such a minor one. Really strange !

As a mom with a 4 year old daughter, I run out of ideas of things we can do together that I'm able to do. So I'm looking for ideas from those who are also a parent of young kids and who are mostly recliner bound/bed ridden. Since I'm unable to read aloud do to shortness of breath, reading books is out of the questions. However I SPY books have been useful because I don't have to read more than just the items we are looking for on each page. I allow her to watch some disney movies or I Spy dvd's that she likes, but she's very active and most don't hold her attention very long. I have her bring her toys to my bed and we play with her dolls, littlest pet shop animals, etc. and that works fairly well, but again, she doesn't play with anything for very long and I end up laying with a bunch of toys on top and all around me. We have a mini lap top for her online Preschool program that she uses next to me in bed and I work with her as she is willing to, but when she gets frustrated and finds some of the learning to difficult she quits. If you have any other activities that seem to work well, please let me know

Blessings,

Tammy

Same here. I get the bp and pulse highs and lows within minutes of each other. I can be sitting and it will be 106/73 at 73 beats per minute and than stand for a bit and it will be 88/60 with a pulse of 130. Then if I sit or lay back down, it will go back to the lower rate almost instantly. Usually when it is really beating fast, I can't even feel my pulse and most of the time my blood pressure reading will error and the nurses that try to take it get frusrated and ask me if I get really low blood pressure readings because they can't get the machine to read. They usually just keep trying until they get a reading they like and mark that in my chart.

Yup, same thing here. I had to push myself to keep a conversation going last night at my husband's sister's house and I was feeling so weak, lightheaded, and oxygen deprived just from carrying on the conversation I thought I would faint. However, I'm not even talking right now and am feeling so lightheaded, dizzyish, etc., so sometimes it does this on it's own just because!

Yes, I get this often when I get overstimulated either by activity, social events, temperature changes, even carrying on too long of a conversation, etc. I also take Klonopin for this.

He he, had to laugh as I read the dilema with attending church services. I'm Catholic also, and have been to Lutheran and Baptist church services as well, and can say that all services in a variety of faiths have challenges for us POTSies For my faith community, I have talked to our priest and he understands why I can't kneel or stand at times, etc. I think some people within my faith community might not understand, but figure I'm there to spend special time with Jesus, so it doesn't really matter what a few folks who aren't able to relate may think. But just like any sort of activity, be it shopping, going outside in too cold or warm of weather, church, etc., it really can be quite the challenge!

My brother was born with celebral palsy and has always been in a wheelchair. I always was the one who took him shopping, on outings, etc. before getting POTS and I know exactly how people react to those in wheelchairs, even when it shows there is something wrong, as CP is not in invisible illness. This is why I am homebound and unable to do anything now, because I would need a wheelchair to do more than very small tasks. I know exactly how people treat those in wheelchairs and would rather live secluded from the world, than to have to be treated as badly as my brother always has been. However, someday I would like a scooter because than if someone looks at me wrong, I can just place it in high gear and run them over!!!

Do they have you on any type of medications that will settle down your over-reactive nervous system? I was where you are at for almost 3 years and then my doctor decided to give Klonopin a try. It really made a difference. I also take Xanax as needed and Atenolol. I believe some people here take Clonidine for the blood pressure spikes, but you have to talk to your doctor about any of these drugs and see what they think. I had run into many doctors that didn't understand my condition and therefore were not willing to prescribe these type of medications, but found one that is sympathetic and knows my symptoms are 'physical' and not emotionally related.

I'm still beddridden at times, and homebound due to weakness, but the sweating, chills, racing heart, nausea, etc., are much less frequent. Far from gone, as I just spent Christmas night and day with these spells, but I got through it without going to the ER by using these medications. You could also try benedryl, which is over the counter, as I've read some people have found a little relief using that also.

As for temperature changes, even with the meds, I have to always be in a room that is approx. 73 to 75 degrees... anything different than that, I will be painfully cold or deathly hot.

Hopefully you can find some type of med to help settle things down a bit.

Blessings

It is a bit different in the US, and you are right, we all need to use our own common sense/judgement in when we are able to drive and for how long of distance. However, I know of more people who are killed or injured in accidents by people who have no health issues, etc. Accidents are accidents. I don't think that a state/country can tell if a person who is healthy is going to accidentally cross the line and cause an accident any more so than someone who is aware of their illness and makes good judgement calls as when to drive. There was just an accident in our area that a 17 year old boy, who wasn't drinking, didn't have an illness, etc., drove the wrong way at night and killed a grandma, daughter, and grandchild. Very sad and again, accidents happen at times even when illness don't play a part in them. Just another way of shedding light on this view point.

Know exactly how you are feeling and with small children who need someone energetic and constant to keep them out of trouble, etc. it is very hard. I guess what I've done is even though we know it's not anxiety, mecations that are for anxiety do seem to help these awful physical symptoms. If at some point, you feel deperate enough to give them a try, I have found xanax to be a very helpful for the exact symptoms you are describing. However, I only take about 1/2 of what a normal dose would be, and don't take it every day as I don't want my body to get use to it/ or dependent upon it. So I have to kind of pick and chose when I need to function a little bit. After two years of EVERY moment of EVERY day feeling what you are going through, I finally gave them a try and so thankful I did. I wish that these type of medications didn't have such a bad conotation. They really can be helpful to those of us who know how to use them properly and understand how they work. I explained to my doctor that I know I don't have anxiety but if it helps me to function better physically, I'm okay using them as needed. (Compared to spending my day in the bathroom, peeing constantly and praying I didn't die right there in front of my baby because of how sick I felt)!

I have more of a 'tanned' color below my eyes, almost a deeper pigmentation. I also have this on my elbows, knees,etc. So not sure if this is what you are referring to, but I've had that since I got POTS, so guessing it must have something to do with this.

I don't tell anyone who doesn't know me extremely well and who I can trust to not be judgemental about a disorder that they do not understand or can't relate to. I guess it's because I've met people who I barely know who have shared their issues with me right off the bat, and it just kind of freaks me out when they do this. My in-laws have some issues with depression, and they are so open about it and I honestly wish they wouldn't talk about it so much. So I know there has to be others who are like me and would rather not know, so I try to do them a favor by not sharing less than positive conversations However, I do use support sites to share what I'm experiencing because it's a 'safe' place to do so... because we all need to vent, share, and learn about life with this illness at times.

As a side note, if it's people who, for safety reasons, need to know, especially for those with fainting as a symptoms, it is best to share the fact that at times fainting is possible and what they should do if it happens, (i.e., not trying to sit you back up, etc. ) without saying it in a way that becomes 'personal'.

Very cute! Thanks for sharing

Yeah, I've had some of those tests done years back. I know there was something wrong with my DHEA, cortisol and catechlomines too. I just don't remember where it all fell. Nothing that they felt needing treatment. However, I'm still homebound and haven't found much to help me get feeling more functionable either, so who knows. Hope they can answer some of your questions regarding your results

Just wondering if you could be anemic also, and therefore the red meat is helping? However, I do know that buffalo meat does seem to help me feel a bit better also, but not as much of improvement as you seem to find. I actually get really shaky (more so than my normal weakness) if I don't have something sweet periodically, it's really weird, but sugar actually helps at times for me. It is always so interesting how we are all so different physically and what works for some, doesn't for others.

Thankful for a place to come and feel "normal" because we all experience and understand life with POTS. I don't know what I'd do if I didn't know anyone else who had this illness. I think of all the people who had this illness before doctors knew what it was and before computers, etc. People who lives in times when there wasn't power, who didn't have heaters or airconditioners, and so many things that aid in helping us cope with our symptoms. So I'm thankful for all the advances in technology and in the medical field and for all the people who made these advances possible.

Oh this is so true for me! Sometimes I can't tolerate being in a car for more than a few minutes. Sometimes I do fairly well. However, don't take curve quickly or I will be feeling like the world just did a 360! The worst is night time. The headlights of other cars make me feel loopy, dizzy and lightheaded. I know I can't drive, but on occasion have tried to and it doesn't work well at all. Actually the thing I notice on a daily basis is when my family plays on the Wii.... wow, I can't watch them play for long at all before I feel like a migraine starting - dizzy, nausea, etc.

Hi Sue,

I'm sorry the holidays can be so difficult. Everyone is going through something, and sometimes they just add up, one on top of the other, and keeps piling up until it gets so hard to cope with. And of course, the holiday commercials, where everyone looks delightfully happy are difficult to watch and can remind us of when things were a lot better and easier in our lives. Sometimes I just close my eyes and imagine life when it was happier and easier. I hope you find ways to find peace in the holidays and know that we are all here for you. Listening and offering words of comfort is something I am still able to do from my bed or recliner and at least gives me a purpose for the moment

Blessings,

Tammy

Wow, I'm absolutely the opposite since developing H-Pots. I use to have an extremely high pain tolerance, but now that my POTS is full blown and mostly bedridden from it, I can't tolerate any pain. Even minor things, like a paper cut, or smashing my finger, or stubbing my toe, will make my symptoms flare immediately and I'm almost in tears from the little bit of pain because it feels like more pain than I know it should be. I wonder if it's due to the hyperadrenegic issue compared to those with just plain POTS? Interesting topic!

Hi Angela,

We were at Children's in Minneapolis, MN. Glad to hear that they gave your son Vancomyicin. I'm familiar with that drug because our daughter was given it for an infection when she was 16 months old when she was hospitalized. I just was hoping they had givenyour son a drug that covers resistance and for the most part, Vanco does.

Take care,

Tammy

I had originall ruled out beta blockers as helpful because I had tried pindolol, propanolol, diltiazam (not a beta blocker but can help heart rate), and atenolol with more side effects than what any positives were worth. HOWEVER, I finally figured out that if I tried a tiny dose and worked my body up to a therapeutic amount, I was able to tolerate them better. I literally started with 1/4 of the smallest dose of atenolol for 3 months, and then added in just minut amounts. So I was taking about 20% of the pill and than 25% of the pill (I had to cut off bits with a knife to increase it). Now I take 1/2 of an atenolol 25 mg and it really dose help with the adrenaline surges that cause the fast heart rate and also the high heart rate upon standing. Hope this helps

Blessings,

Tammy

I'm sorry I'm just reading this now. It is interesting to see that we were having almost the identical experience with our 4 year old daughter the last week of July. She had been admitted on August 7th. She also had to have surgery and a chest tube for draining, etc. Does you son still have coughing spells at time that are 'productive'? Since the timing as your son was almost exactly as our daughter's, I'm wondering if this is what the type of virus going around this year seems to be causing... the high fever with pneumonia, etc. She had chest pain and a very hard time breathing also. The doctors at the Children's Hospital had her on Zyvox and Zosyn. The reason they used both these drugs was because they are seeing a lot of resistant forms of pneumonias. What type of antibiotics did you son have? The surgeon who did her VATS procedure, stated that it could take 3-6 months to attain up to 90% recovery, and 1 year for a complete recovery. They also said that a reoccurance is possible in 50% of cases, so I now I tend to worry every time she's catches a cold. How is he doing when he catchs a regular cold? Has he gotten through them okay? Sorry, I'm just surprised to see someone else having experienced this nightmare, so I tend to ask lots of questions

- Tammy

I don't know why, but when I've ended up in the ER due to severe flare, notoriously, I will be on the 2nd day of my period. Hmmm, must be some connection.

This will sound strange, but sometimes, pushing, like when you have a bm, helps reset my system too. Just a few minutes ago I started have a really bad rush because I was talking on the phone too long and I tend to walk around while I'm on the phone without realizing it, and I moved around a bit too much and talking at the same time (bad combination), so I tried the vaso manuever and it really did reset my system. This does't always work, but it's worth trying when you have a adrenaline surge.

Yup, I can relate also. I have been told the same about my tricuspid and mitral valve as you. I also got sick overnight after a cold virus. They don't think the weak tricuspid valve or the small leak in my mitral valve has anything to do with my symptoms, however they are just like yours. I'm homebound and extremely weak. I feel unwell much of the time also. I wish there was something I could tell you that helps. I do see a bit of an improvement when I drink Lemon Ginger Tea by Yogi brand as it also has licorice root in it. I tend to pee out liquids faster than I can drink them, so fluid loading is a bit of a problem. Compression stockings are a bit helpful. Also a very tiny dose of a beta blocker, which takes forever to work up to a theraputic level but that's the only way I finally was able to get my body to not reject it. Hope this helps a little. Take care