lieze

Me-and my exposure was from a patient with shingles. I went right away to ER when I broke out with my first blisters and they would not treat me. I thought that they would give me Acyclovir or something and he did not. I have wondered if it would have helped prevented the POTS from developing. I did okay with the chicken pox. Then when my 2 yr old broke out too I got fever again and felt crappy and it was when I attempted to return to work that my first episode occurred. During this time I got very very paranoid about being in a health care facility at all and the exposure that happens there. I was very fatigued when I was exposed to the shingles. I had been around it for 18 years and never got it-I think my immune system was just worn down and boom I ended up with chicken pox. When I went back to work the patients seemed to be dropping like flies. I was having them pass out on me I got to where I could see them start to go and would get them wheeled down to their rooms and into bed. I felt like a sitting duck! lieze

Wow thanks for the great info. I was taking it everyday there when I was trying to hang in there and work and it did help. I often look back and wonder how I made it through that nine months and especially when I was getting the horrible vagal stimulation that would send me into the bathroom and I just felt so horrible like I was going to go down in there in that little room with the tile floor. Although my symptoms were not fun I think taking it everyday helped me get through that. I have eased off everything because like others have posted I didn't want an ulcer or to wear out my liver or kidneys but on my worst days I take one and it always makes me feel better. lieze

I think I sometimes do this to myself and it makes me soooo mad. I get anxious and automatically I feel symptomatic. My boss just called and as soon as I started the conversation I got breathless I hope she didn't notice! But I wish I had more control. Ha maybe I need to just squat while talking on the phone. I had to get up and leave the room and try to escape where I could hear because the kids were talking loud right into the phone I was embarrassed. lieze I love my kids but these toddler years are frustrating enough without being potsy.

Bless your heart. I hope you continue to feel better. Damsel

I'm not on any meds regularly but still experience the adrenaline surges. Mine are happening mostly during the day and while driving hate that. Sometimes they don't seem as bad but yesterday it was almost debilitating. I almost considered trying meds again just to avoid this. lieze

Thanks ladies I keep trying to connect it in some way. We were both exposed to the mold last summer-I seemed to show signs right away-he had them but ignored them and wouldn't admit there was mold. We got that cleared up and all we have now since we live in a woodsy area are the types of molds that grow outdoors. None of that black mold toxic stuff. I really thought the chicken pox was my big trigger! And then I had viral syndrome after I don't know if that affected him too? Then there is this high blood pressure problem he is having that maybe causing a lot of his symptoms? He had a total checkup about 3 years ago for the same complaint and they couldn't find anything wrong with him. His sister has had seizures so here is another link-they cannot find a cause for them. But she just went into the hospital Friday because she was experiencing "clanging" in her head and was very uncomfortable. So maybe they have family history also of neuro abnormality or sensitivity? I noticed last winter when my pulses were going sky high he purchased a heart monitor-the type with the chest strap and the wrist watch design? His heart rate seemed high also. He would be at 99 > 100 just sitting and watching tv but he acted like it was nothing. He would also go up to 120 just getting ready to go out and snow blow. I couldn't believe he didn't notice it at all and acted like it was no big deal. I believe today was the first he reported any visual disturbance. I should have instructed him right then to go get his blood pressure checked but I didn't think about it-I just thought oh no he has it too! Sorry if I'm just being paranoid this is just getting a little bit freaky. lieze

It was one of the first things I guess I noticed. There are also vertigo migraines? I don't really have a headache with mine. Today I am just really cloudy and sleepy. I had a lot of anxiety today panic attack while driving again-hate that. So maybe we're both kind of feeling a wave of something? I think it will get better for you-mine basically went away and I only feel it now and then. lieze

This is getting weird. Husband is also having some symptoms and I'm getting paranoid. Well a couple times he has gotten a bit pale and said he feels like he could pass out. He sits down and gets over it in a very short time period. His blood pressures are running high. Today at work he called said he didn't feel well, he's been doing this lately, and said his vision was flickering. He said he was trying to work at his computer and it was like there was a fan on in the room causing a visual affect on the computer screen. I told him to turn off his light in his office and maybe it would help. He is having almost a constant chest pain, maybe more a heartburn or esophagus thing? Honestly besides treating the high blood pressure I'm not sure he'll get any help around here. I've been to ER half a dozen times and they just look at me like I'm wasting their time. Maybe it's related to the high blood pressure and is a separate issue? We can't really get him into a doctor he leaves on a trip to Japan at 4 am. I got really freaked out by his visual disturbance though today I thought oh no not him too! lieze

I guess at this point for me I'd say if a psychiatrist could give me my life back bring them on! lieze

Welcome-I too am still trying to get adjusted to this new life. lieze

Hang in there Sara! I'm glad to hear you were feeling pretty good maybe things will quiet down again very soon for you. Have you tried taking anything for anxiety for the stress? I notice I don't seem to have a very high threshold for it at all. I would probably try an antianxiety if you need to make it through 5 more weeks. It might help your heart rate come down a bit. Just try a tiny dose if you can. Xanax is amazing when I take it I don't even feel as if I have POTS-get an appetite and everything. I just choose not to take it on a regular basis, but if I needed to get through some days at work I'd probably opt to take it during the times I was at work to help get me through. Good luck keep us posted. lieze

Wow it sounds like maybe you've finally found a doctor that can help? He at least has an idea of what you are experiencing=I think maybe this is a breakthrough for you. lieze

I'm thankful for the good days you've had and think maybe it is a really good sign. I hope that you have more of them. lieze

Hi Lindsay I also went to an endo that told me I was malnourished and the reason I was symptomatic and felt so weak was because of my nutritional deficit. The reason he said this was my amino acid gap was only half what it was supposed to be. I have noticed since I've been able to eat a wider variety of foods without symptoms I do feel better. I am worried about that still though. I didn't end up going back-he had ordered a thyroid function test and an adrenal stimulating test and I chickened out of both. My thyroid levels ended up coming back normal so no reason for the test right? And my adrenals were overactive? So I think it would have just made me feel really horrible to have that test. Then he wanted to scan me for a pheochromocytoma-a 4-5 day whole body scan and I most likely have hyperadrenergic POTS so I opted out of this very expensive test as he called it. I'm still waiting to get into an endo at Cleveland Clinic? My cardiologist looked over my labs and basically okay'd me to skip that scan for the pheo? Said that I could very well have POTS but he thought my symptoms were improving. He assures me every time I see him that my heart is fine. How is your diet?-just curious since I am feeling a bit better now that I can eat. lieze

i am the oddball I prefer the first one! I like it-think it's cool! lieze

I always wake to an adrenaline surge and my heart races. I don't necessarily feel the dizziness but cannot hop right out of bed. I have to get my bearings first. It was someone here on this site that explained the adrenaline surge when awakening. I guess I have experienced this since having chicken pox Dec of 09. I really don't want any more viruses that affect the central nervous system-please! Let us know what you fine out. lieze

Maybe you can figure out a way to pace yourself. To study while you rest and save energy for things you really want to do? Please try to get plenty of sleep, eat right, and drink a lot of fluids. Take a vitamin too if you don't already. I know the emotional part is difficult some days. We're here if you need to talk and we understand. lieze

Well even though your pulse is a bit high? Those vitals don't just scream at me! I think if you're feeling good keep up the good work. I have said before that I am just in awe when I feel like total crap and take mine and get like 90/54 and a pulse of 80. I think oh my goodness I'm going to live to be 100 and feel like crap! ha ha! But I think if you're feeling good it's a good sign. Keep up the activity if you can to the point just before fatigue so that you can sit down and rest and not just feel sick. I think the activity is good for you and you sound like you're doing great-hang in there! lieze

I have experienced these symptoms and it is very uncomfortable while it's happening but has always passed for me. I'm sorry that happened and yes it does make us feel vulnerable. lieze

I like it too! Can you guide us in our careers tearose? lieze

I think I'm trying to turn my weakness into a cool ride. Problem right now is I'm not working so much. I love the idea of renting one-that sounds great! And I did wonder at big shopping places how I would do it but my kids could push the cart. I'd just have to try it. I'd love to be a guinea pig and try it out for the group. I could put a bit on youtube! lieze

What comes to mind right away is an ebay business. If you could get help with the shipping part. It takes a lot of time to list the items and watch your listings. Maybe you could team up with some friends and do the sitting parts. I know it isn't high dollar but it's something. If I hear of anything else I'll look you up. I am also trying to think of career ideas. I would like to bring a little money into the home and my every other weekend position is being eliminated. Shh I feel a bit happy about that but hate to lose the income of course. lieze

Yes I stand okay-I guess I don't do well standing in one place for a long time so I'd have to see how this worked but what I'm thinking of is like at work-I would be there in a flash. Maybe I'm just dreaming but it does sound like it would eliminate a lot of my problem. Distance is my weakness. lieze

I've noticed what tearose is describing too. Sometimes when I've felt a little worse I end up with cold symptoms within a day or two. I also realized how with my job sorry to run on this-every day I went to work I was exposing myself to loads of germs that my body was having to fight off. No wonder I was always fatigued! lieze

I was tested at Cleveland Clinic and they said I was negative for Celiac's. They must have suspected it huh? But I have a very weird diet. Can't help it. I think it has become subconscious what I eat and don't and I have noticed that after some meals I just feel bad so I guess some where in my head I have a list and avoid those things but I couldn't tell you what they are. *shrugs* I have done this most of my life and am oblivious to it. lieze