Tammy

Thanks for all the replies and advice. I guess they could be just severe adrenaline rushes. I find it interesting that even after one of these episodes has mostly resolved, it takes me at least a day to recover from the exhaustion and also my BP stays mostly at a higher level. It has slowly been going back down throughout today and into tonight which is going on almost two days since the worst part of this episode. Are they suppose to have such a long recovery period? Usually when I get what I consider my regular adrenaline rushes, they are shorter in length and once they are over, I feel okay as to my "normal" potsy self. Not so drawn out like these tend to be.

Tammy

Glad to hear your feeling a little better with your depression. Sometimes it's hard to get back up after the depression monster has kicked you down, but you're stronger than it and with the help of those who love you, you'll keep pushing along.

Take care,

Tammy

Many prayers for a speedy recovery from your surgery and continued hope of improvement with the infections.

- Tammy

Hi Ernie,

Okay, can you describe your adrenaline rushes so I can have an idea of how I view my adrenaline rushes and maybe this is what's going on. I know every person is different physically, but sometimes it just helps to know of someone who goes through what they themselves do. Today I'm still very tachy and my bp is 130/90 but was down to 99/65 during the night, so something conitnues to be off. Does your adrenaline rushes continue into the next day? Thanks

- Tammy

Hi! Thanks for the replies. For some reason, adrenaline surges seem a little different and usually don't last as long. Also, no I haven't been checked for pheochromocytoma, but at the last ER visit last month it was something they want to have my reg physician check but said they highly doubted that was what was cuasing these. She hasn't choosen to check for it at this time, but when I see her next month I'll have to bring it up.

I really hate when I get these episodes, along with having the deal with the normal POTS type symptoms, periodically I get the following episodes:

I usually start to feel extremely weak, and my body feels kind of heavy and I have pressure in my jaw area. Today I layed down to rest as it started and in about 1/2 hour I started to feel this hot/warm sensation in my chest. I was sweating a lot, even the palm of my hands were sweaty. My heart started racing. Then I felt like I had to throw up, but prevented myself from doing so. and at the same time, I had to have a soft bm and I barely had the strength to get to the bathroom to do so. Then I got the chills so bad and continued to for about 20 minutes. My BP was 160/100 and my hr was 130 at the worst of my symptoms. These episodes seem to last for about 40 minutes from start to finish. I end with a bp of 117/73 and hr 74. They leave me completely drained and for many hours afterwards, it's like my body has "aftershocks" and tries to start having another spell... like the warm sensation in my chest, sweating, and chills keep coming back and my bp will start to rise and come down over and over. I'm always scared to go to sleep after it happens even though I'm to the point to passing out from the exhaustion that it causes.

I have gone to the ER a few times due to this and the worst of the episode is gone by that time and it's usually only my BP that is still somewhat high - 130/90 at the time, so they discharge me with recommendations to follow up with my physician for high BP. I've had 2 holter monitor type things in the past 7 years and 1 was for 3 days and another for a month and I never had this exact type of spell while on them, so dr just states I have inappropriate sinus tachycardia - but I don't think these episodes are sinus tachycardia due to the symptoms I get with them are so different.

So looking for advice... since going to the ER costs us about 2,000.00 each visit due to the insurance we have, I can't continue to go each time these happens -- yet our ergent care clinic won't even let me come in when I'm having one as they are too afraid they won't be able to deal with whatever is going on. I'm just not sure what to do and not even sure what's going on.

Has anyone else had these type of spells? They scare the heck out of me!

- Tammy

I would feel the same way you do about it. I never understand how all those aid type programs work. Why they won't let you pay your medical bills from last year is just rediculous! I can relate with that my brother was born with cebral palsy and I remember when he was 18, the high school he was at, suggested he apply for disability, but my parents refused to access the information due to how it could control his life in some ways - they were more worried about they type of medical help he would get through state aided insurance but also to have to deal with reporting how any sort of funding would be spent would have been more stress on my parents than what it was worth -so to speak. My mom was at home with us kids and dad was a janitor so they definitely could have qaulified but by choice, as like you stated, it sometimes isn't worth it but it's a tough decision to make. That was over 20 years ago but from what you have noted, sounds like not much has changed. I think if it got to a point where if you didn't get this help you'd end up on the streets, all the loss of individaulity and independence would be understandable and more acceptable.

Well I hope this all makes sense. Having a really bad day so sometimes it affects how my train of thoughts go together!

- Tammy

I'm in MN but the change in seaseon, ie., sun up earlier with long bright sunny days and warmer days is making me much more lightheaded and nauseas. Also could be that my daughter rises with the sun and my sleeping pattern has been non-existant, so maybe not just the change of season but the changes of routine it causes? But I hear ya, it's not fun!

- Tammy

Sandra,

I'm so sorry your feeling so badly. We truly do understand. I really don't have any advice, just wanted to let you know another listening ear was here

- Tammy

Due to my health and at the advise of my cardiologist, my husband and I adopted our daughter. We love her so much and taken into account my health and lack of strength, this was the absolute best option. I would definitely recommend checking into your options to adopt if your open to the idea. Some agencies are more tolerant of adoptive parent with chronic illness others are not. Also, as you think about becoming a parent, sleeping through the night and any sort of nap during the day are a thing of the past and it does affect how you feel on a daily basis. I love being a mom, but honestly have become much sicker since becoming a mom and my daughter lives in front of the TV due to how ill I am and that is very frustrating but she's also very active and climbs up on everything so I'm constantly needing to get up and almost faint in the process to get her away from something she's getting into! Would guess that anyone else on the support site that has a toddler and has severe symptoms can relate and just felt that it's important to be completely honest with yourself and understand the implications on your health becoming a mom may entail.

- Tammy

Yup, add me to this list of those who do. Picking up my daughter's toys on the floor is a killer for me. I actually have bought one of those grabber things with the long arm that works really well to do such stuff and it really helps. Otherwise, I just grab a box and crawl around on the floor to get all her toys put away. As for the general population, yes they do get this also at times but not to such a severe degree. When I use to be able to work, I did a lot of filing and when I'd get sick after filing things from bottom shelves to top shelves, and I'd ask them if they have that too, they say that they get lightheaded but not ill feeling so similiar but different.

- Tammy

Thanks for the info! It makes so much sense as to why I feel so awful when my numbers are close together. It does tend to happen immediately after I've tried to do minor housework, ie., standing by the sink to do dishes, scrubbing the fish tank, ect. It usually takes about an hour and a half for me to regain enough strength to stand up after this happens. Very frustrating. Anyone know if there are any medications out there to specially address this problem? Thanks.

Tammy

Anyone know what it means when your blood pressure numbers are very close together? A lot of times my blood pressure will be 96/78 or 101/88 and so on. I've heard that a healthy blood pressue should have 30 between them but since mine doesn't, what is wrong? Is it just part of having POTS?

- Tammy

Like you mentioned, it kind of varies by person. I'm not sure if I'm hyperadrenergic, as I do have lot of adrenaline rush senation issues and lots of things that seem to fall towards that, but maybe that isn't why I didn't do well with melatonin. I guess if you decide to give it a try, cute the dose down at first to see how the reaction to it goes. A lot of people do really well on it. I felt very lifeless and short of breath from it and had more tachy - just very unwell feeling. I drank a lot of water to get it out of my system quicker afterwards. It all depends on how ones body deals with it. Hope it will work and give your son some needed rest. Also, what sometimes works for me, is Tylenol PM - only 1/2 of a pill due to sensativities. It seems to somewhat calm down my system when it's wound up.

- Tammy

Definitely try sipping, very slowly ginger tea. It takes a while to work, for me, I usually notice I'm not as nauseous about 40 minutes after I started sipping my tea. Hope your feeling better.

- Tammy

Hello every bunny,

I'm scheduled to have a test for my cortisol levels and this time they want to check by doing an IV with a few blood draws before and after the IV med. (I had done a saliva test but my cardio doesn't feel that's very accurate). Has anyone ever had this test and if so, how did it go for you... Since I have lots of adrenaline rushes especially after stressful times and my system is extrememly sensative to any med, I'm a little bit scared of how I might react to the med they have to give me. Very much in need of some support or I fear I may very well just cancel the test and give up again on trying to pin point more of these problems. Thanks!

Tammy

Oh, how I wish I felt well enough to feel bored! I always have so many things I'd like to do but don't feel well enough to do. But I guess what I do to try to get my mind off of how ill I'm feeling, provided that I'm well enough to walk to my lab top and lay back down with it, is surf the net a little bit as I can tolerate it, so that's really all I'm able to do as a boredom buster Today's one of those really yucky, ill days and guess what... here I am

Oh wow, that's exactly how to describe it. I am so bad at trying to explain all these weird sesnations I go through and then I read through all these posts and it's like.... hey, that's what's going on. This is the first year I've started having those sensations like you described and yes, usually before my period, except this month it was really bad and is still happening even after my period so far. Yuck!

- Tammy

If you can tolerate vitamin c and things like airborne products, you should be fine with this. They actually will prescribe it to children from ages 1 and up. With how bad our symptoms get with virus' I'd start the anti-viral as soon as possible. Hope your feeling better soon

Tammy

Hi Jacquie,

I'm so sorry you had to cancel your appt. I also have been unable to make it to doctor appts because I was too sick to go (seems funny in a way when you think about it... "too sick to go to the doctor"). I can't tolerate any testing for the most part so I've given up persuing any more diagnosis. I learn alot about my body just reading here on the forum and figure it's mostly due to all that this illness entails. I hope you'll be able to tolerate the test on a better day.

- Tammy

Thanks for all your replies! I am so thankful for the support here and gives me so much comfort I still am not feeling well at all. I'm not sure if my daughter's b-day party set things off from the previous Saturday - stange that it would take a week to really kick in. It was only like a 3 hour thing and I felt at ease during the party, so wouldn't think that was it. As for the type of chills, it was like bone chilling with shaking and teeth chatter. I did go in for a follow-up visit and my doctor wants me to try Inderal and Prozac, but usually meds my body won't tolerate so not very hopeful. I took my first Inderal this morning and felt very adrenaline "rushy" about and hour later, which is exactly what I would want them to get rid of, so that's confusing. I took a infant size amount of Prozac last night and didn't seem to notice too much, but wasn't feeling too bad at the time either. This is just so frustrating and I seriously am afraid I won't be here to see my daughter grow-up, it's like I feel like I'm in a dying process and can't find help from physicians, etc.

Sorry to be so not positive but I really am at a lose with all this again.

-Tammy

Hi! Just was wondering if anyone has ever had severe chills (like where you just can't get warm no matter how many blankets you pile on or even when sitting in front of a heater) but without having a virus? Usually when I get chills, I just need to sit in front of a heater or pile on blankets and they go away. For some reason, starting last week, I have been feeling extremely weak, worse than normal. Than by Saturday, I ended up with tachycardia that won't stop so we ended up in the Emergency Room. Eventually the tachycardia stopped but I continued to feel chilled and very ill. I had another one of these episodes again and just feel so yucky. The ER just stated that I had hypertension and that the tachycardia was probably from anxiety, which I really doubt because it all started at the same time. I like never get hypertension, I'm always on the low side for BP, so this is really strange. I would guess maybe viral but I don't have a fever, so these chills don't make sense and why I can't get warm is just so different. Anyone else ever have anything like this happen to ? It's really got me worried and need some support Thanks -

Tammy

Okay, so my daughter loves to have us read books to her, but for some reason I get very breathless/short of breath when I try to read more than two pages to her (these are very short pages, like two sentences on each page). It is so frustrating since I can't run and play with her, I'd at least like to be able to read

to her Does anyone else have a hard time with this... also singing is impossible for me about 90% of the time.

- Tammy

Does anyone here find that they can tell they are coming down with a virus before they have any of the symptoms of the virus? For some reason, within about 12 hours before I come down with a virus, my heart does lots of flips and flops, and will beat faster than usual. It doesn't worry me, just annoys me.

I'm sure it's not this simple, but sometimes for me I can't stop because of the whole gag reflex. Also visually it's a huge problem for me. If I can see myself throwing up, I can't stop. So I have to turn the lights off in the bathroom while I'm sick. Either way, being "ill" in that way whacks out my system royally and I can relate to having a phobia about it.