hilfgirl33

Yes, I am outside of Philly. Thanks for the tip. I am giving this a few more days. My ears have been feeling a bit clogged, too. This has just been a really nasty year so far for us with viral infections/colds. I am HOPING and PRAYING we are spared the flu bug. I had the flu shot myself so hopefully that will give some protection, but I couldn't get my kids vaccinated. I had an appt for next Wednesday and they called me Friday and told me they were not giving anymore unless you had a chronic illness. I waited because I wasn't sure what to do about the flu shots because of the thimerosol (sp?) in it especially with my 4 year old, and now I worry I really missed the boat. Are you feeling better on the antibiotics Nina??

Nina, Hope you are feeling better. Was wondering how you knew you had a sinus infection? I have been dealing with a cold/sinus thing for almost a month now, some days I feel better than other days it acts up again. I thought sinus infections were draining green or yellow (sorry for the gross factor). I am draining mostly clear but a little bit of green mucuous in the morning (sorry again). Really don't like taking antibiotics but I would love to feel better!!!

Michelle, Thanks for the link but I wasn't able to open it. Is it really long? I am very interested in reading it. Could you either post it or email it to me if you are able to open it?? Thanks again. Elaine

Just wanted to say it could be a virus. There are tons of things going around. We have had two separate viruses, one causing nausea and stomach cramps, no diarrhea and no vomiting. But, I do get the occasional bouts of nausea that I think is either associated with POTS or dietary issues. When I get it, it feels like I could throw up wherever I am (God I hope that doesn't happen). Is that the way it feels for everyone else? Then I just sit calmly and it will pass pretty quickly. Didn't know for sure if it was POTS related or not!!

I, too, get chest pain so it seems like one of the more common POTS symptoms for a lot of us. Mine is much more notable right before my period. In fact, I can usually predict my period within a 12 hour time frame of the chest pain. Interestingly, I can predict when I ovulate by major heart palpitations!! I had one at Thanksgiving dinner and found I was ovulating the next morning. I get them at other times too but the worst incidences are linked to my cycle.

Happy Thanksgiving. I hope everyone has a peaceful and enjoyable day. I also am headed to one of my least favorite in-laws , but am trying to make the best of things. I actually packed a bag of Tylenol (along with myother meds, and DS's as he is sick). I have a small pharmacy going . I also feel thankful for so many things.

The only time I have a weird smell to my urine is when I eat asparagus . Maybe you should get it checked cause it could be an infection..??? Good luck!!!

Tim, SO glad to hear things are going well.

Dear Futurehope, I soooo Hear ya!!! I am also like an alcoholic when it comes to sugar. I can't have a taste because it's all downhill, I want the whole box, bag, cake, whatever. I can't just have one. I usually can control myself shortly after I start though, because i Know the consequences of POTS flaring. And I also gain weight like a fiend with sugar. I was also diagnosed with polycystic ovarian syndrome which is linked to glucose intolerance, type II diabetes and infertility among other things. I know this is why I gain weight when I eat sugar, but I've had this for quite a while and it wasn't until I had POTS that it actually made me sick. It just makes me wonder how closely the two are linked. I am having major league PMS this month, probably should get my monthly friend this weekend, and I think I'm going to have to wait this cycle out to get out of this bad binge I've been on. I"ve been pretty good the past few days, but not anywhere near where I need to be. Well, then the Holidays.......... I could really cry. I told my daughter who came home from the mall today with an Auntie Ann's cinnamon sugar pretzel and said "here do you want this" and after I ate most of it, that she is never to hand me something like that again. I told her it is not her fault, it is mine but I'm really weak. I need my family support right now and I feel like all they ever eat is sugar, against all my good efforts otherwise. Sorry for going on but like I said.. PMS!!! Signed, Living in Sugar He** (for now!!)

Thanks for the support ladies. My diet was much better yesterday with a few snags. Michelle, when I first was getting sick and noted that sugar was a trigger, I started following the insulin resistance diet and ate no sugar at all. I know that feeling of eating something that tastes so sugary because you are not used to it. Unfortunately I have been off that wagon for a while and I really need to get back on. For some reason, I have been having such a hard time with my daily diet. I think I'm tired of all the same proteins. I do like veggies so that is helpful, but I really need to find some new recipes or something to trigger my interest in healthy eating. They have to be easy too because with kids and having POTS, my dinners are all really simple anymore (that may be theproblem too!) - family loves lots of pasta and its really easy. Just wondering of you guys would post some of what you eat on a daily basis and some of your more favorite recipes or things. Thanks for any help!!! Elaine

I am glad to hear everything is going well. I will continue to keep your family in my prayers. Hopefully the ECG will be much better Monday. Elaine

Okay, yesterday I had some cookies and didn't feel well the rest of the day. My diet hasn't been great either. Today I've actually felt like maybe I'm going down with something, headache, chills, stomach rolling and cramping up, nauseous at times. Of course it being Halloween, there is tons of candy around the house. I was very very good until just a few minutes ago when I saw a MaryJane (haven't had one in years). After that, the sweet tooth acted up and I had a Baby Ruth and three small tootsie rolls. Now I feel even worse!!! The thing is, I know how bad it is going to make me feel but my willpower is so bad right now. All of you who have food problems, how do you control your dietary cravings? I try not to keep it in the house but I have kids and they attract it like flies on ... well you know. My DD had to bake German Chocolate brownies last week for German class and I had to cut them. I just can't resist. Signed- Off the Wagon Again

Tim, I will continue praying for you and your dad.

I will be praying for you and your family. God Bless.

I would say if you found improvement in your symptoms by changing your diet, you have your answer right there, without being invasive. I won't even think about doing anything invasive unless it is close to being life or death. I have endometriosis and adhesions and I do suffer from it, but relief from laparoscopy is questionable and I won't do it unless things get unbearable for me!!! The effects of the surgery would be too much for me right now!!!

Stellakitty, The criteria for having POTS from what I understand is having an increase in HR above 120 bpm within 10 minutes of standing. Correct me someone if I'm wrong. Not everyone has BP drops. Who is saying she passed because from the info you gave it doesn't sound like she did to me!!

My heart rate goes up too after eating sugar, I get lightheaded, and I have stomach symptoms, too. Depending on the day and how much I eat, depends on how bad things get.

Yes, I have experienced this. Sometimes my left arm feels numb but not pins and needles, kind of like heavy and not there. Don't know what causes this.

Anything high in carbohydrates, rice, pasta, potatos, sugar, sets me off. There is a glycemic index that ranks foods that will raise your blood sugar the most. I seem to do better when I eat foods that are on the low end of the index all the time. I try to stick to mostly meat, chicken, fish, veggies and some fresh fruit. That works best for me. I also snack on sunflower seeds instead of pretzels or chips. Nuts are a good snack, too.

Hi Julie: I'm glad you found us!! I am sure you will find all kinds of useful information here. When I was first diagnosed, my symptoms were probably at their worst. I think most of the reason was because of the stress of not knowing what was wrong, trying to fight my way through things because everyone kept telling me I was okay so I MUST be, taking meds that were not good for me in hopes of feeling better that actually aggravated things so much worse. Once I was finally diagnosed and found the right regimen, things have calmed down a bit. I still have significant impairment, some days worse than others, but like I said much better. What you said about homeschooling and not being able to sit all the time, when you are feeling better I believe that sitting all the time is actually a bad thing. I feel much better when I spend some time walking around and have time on my feet and then rest, usually lying down for a while, for different periods during the day. Sitting all day or standing all day are both bad, though standing would be much worse. So you may be able to continue with the home schooling once you are feeling better. I think everyone here will agree that you need to be so aggressive with information and your care, and you need to find a doctor who knows about POTS or who is more than willing to learn and listen to you and read the info you bring him/her. That will be a challenge, I'm sure. I was lucky enough to have a POTS doctor 20 minutes from my house. Good luck to you and I hope you get on the right track with feeling better soon. Elaine

Just wanted to add that I have had this but haven't had them in quite a while. I was more likely to have them when adding new meds at high doses (when we were in the initial phase of trying to get my medication regimen down). I believe our POTS bodies can't handle too much change at once, either medication or stress, and when things get bad and our hr's get high and adrenaline starts flowing, this is what happens. I would recommend some things that helped me: FIRST AND MOST IMPORTANT, you need to take her to a POTS/Autonomic doctor as soon as you can possibly get her in. 1. Near complete rest until things calm down. Walk a little when she feels up to it. Although this isn't a psychological disease, I know that stress and anxiety made things much worse for me. B4 I was dx, I would push and push myself because I couldn't believe this was happenign to me. This made things much worse. Once I relaxed and accepted that for right now, I might have to do a MAJOR lifestyle change, things calmed down a bit. 2. Try and find out what meds are truly helping. To do that for sure, take whatever they prescribed for you and give it to her in either 1/2 or 1/4 the dose. If it doesn't hurt and maybe helps, up it slowly (week by week, I'd say). Florinef gave me headaches/brain chills so I d/c that, and Mitodrine upped my tachycardia. I just take Toprol 1/2 tablet in the A.M. and 1/2 tablet in the P.M. Too much beta blocker can cause things to be worse cause they can tend to lower BP too much. You have to find the right dosage. Some people can't take them either. I find that Ativan does help me immensely and she may need something along these lines for now. If it helps, I wouldn't hesitate giving it to my child if this were happening to her just to at least help her through the rough patches. I look at it like if I have too much adrenaline coursing through my body and Ativan suppresses adrenaline, then it is necessary at those times when I am adrenaline overloaded. If it doesn't, another type of anti-anxiety like Klonopin helps people with POTS, too. Hopefully your doctor will lead you in the right direction. Having said that, there are lots of people with POTS who don't take anxiety meds, too, so go figure?? 3. This works for me, not sure about others, but I really have to limit my sugar/carbohydrate intake. I think I'm prone to low blood sugar or jsut ultrasensitive to the adrenalin rush you get from sugar, but eating a lot of protein in the a.m. (tuna or salmon), and throughout the day with each meal, helps me a great deal. Watching her diet and having her watch it will give you good feed back. I know a lot of us here have trigger foods and food sensitivities/allergies. 4. If she wants to walk, let her walk in increments of not more than 10 minutes, then rest, then 10 minutes later if she wants, until she is feeling better. When at my worst, I couldn't walk to the end of my driveway without getting chest pain. Now I'm able to walk 7-10 minutes at a time without grossly aggravating my symptoms. Too much of anything is going to send her into overdrive. I'm so sorry you are going through this. The only thing worse than having it yourself I would think is watching your child suffer with it. Most people do see a lot of improvement from the time of diagnosis and once they get on a good medication regimen for them and they learn to cope with their problems. I will pray that things get better for you and your family soon. I believe they will, you just have to find the right help. Good luck and keep us posted. Hope this helps. Elaine

I get this too, occasionally. I used to call them brain chills when they were really bad, but they have improved with the medication regimen. I have no idea what they are, but my sister who has MS also gets them. My healthy sister thinks we are crazy. I think it has something to do with blood flow to the brain, or some type of neurologic issue.

Dan, Sorry things haven't worked out with the Paxil. I was hoping they would because I'd like to wean down my Lorazepam dosage, too. Just a question - are you cutting back yet on Lorazepam/Ativan or were you waiting to see what the SSRI did? I have been trying to cut back on my own, too, and some days it is okay but then I'll have a flare-up and the Lorazepam is so helpful in dealing with days like that. I'm not sure I'm ready yet. I believe that Lorazepam also helps me deal with twitches and spasms too, though mostly in the pelvic and stomach regions. This may be TMI and is very embarassing but I suffer from stomach and rectal spasms (talk about painful), and I think it is autonomic related, and I think that the Lorazepam calms this down a bit. I wish there was something else we could take that would help with this I am rooting for you, though, so keep us updated!!!

I have applied for disability. I got a call the other day from my case worker and she said she was mailing out some more information that she needed me to fill out. Well it came today and it was very extensive questions related directly to my inabilities and fatigue issues. They asked me all kinds of questions like do you have problems taking a shower, cooking, gardening, being in heat, getting dressed, food shopping, sitting or standing for long periods of time. It seemed like it was custom made for me or for people with POTS in general and after I filled it out, I was actually getting depressed at all the things I can't do written on paper. Is this common for disability?? After I answered all this, I don't know how I couldn't be approved. I did try and tell them that sometimes I do feel decent enough to do some normal things in a day, but usually that's it. Thanks for any input. Elaine

((((HUGS))))) Don't have much to add, just sorry you're going through this.