houswoea

I don't know what is the problem, but I'm crashing harder than I ever have and it's scary. I'm having unceasing waves of adrenaline surges that are so bad all I do is lay in my bed with ear plugs and an eye mask on and wait for it to go away. Even seeing any light at all or hearing any sounds makes it go crazy. Right now I'm in an okay period, but I know it's going to hit again soon. I know it's not migraines, but I don't know how to fix it and it's making me crazy! I've seen every doctor in the area but they all say it's anxiety or migraines and I take the meds for both and it doesn't help and I can't stand it anymore it just hurts so much I'm barely holding myself back from taking every pain killer I have just to see which one will make it stop! Nothing helps! Can any one help me? liz

I agree with pat57. Why rip yourself apart? You can't do any work if you can't stand anymore.

Interesting! I have often felt like I could make good use of a lead blanket too!

Did you find a way to make it stop? I'm having a really tough time with these kind of attacks too. I wish there was a way to control them, it's driving me crazy! liz

wow, did that freak out the mailman or what! Did your head feel better? Be careful, and feel better! ***** that you're having a rough spot, but you'll get back to your normal self soon!

Oh few, I'm just being a worry-wart. I can never really tell! They always make the labels sound so serious, and the doctors are always on the other extreme so I get scared I like the tramadol, but I can see it would be very easy for me to get addicted! It makes me... um, happy? Or something? Even though I can still feel the pots, I just feel really okay with it. And sleepy.

Okay, so I'm am the least medically-inclined person ever, and I'm trying really hard to make sure I don't make things worse for myself. It's not that I don't trust my doctors, it's just that they seem disconnected from every other part of my treatment, like they all have their own pieces and if it doesn't fit with what they want for me, they tell me to stop whatever the other doctor says. So I finally got some pain meds, praise Jesus, and it's tramadol. I can't tell if I should be cautious about using it because I'm already taking a low dose of Prozac to see if I can lower my norepinephrine I'm scared that I'm going to get sicker... probably not like life-threateningly, but just not better and I want to be better! But My primary was the one to give the prescription, so I want to trust her, but I know we're all a little more sensitive to medication and I wanted to see if anyone has had trouble with it before? I don't want to just stop one or the other, but that's the only option they ever give me if I'm worried. Thanks! Liz

sorry about the man trouble! But one thing I have learned in this short experience about dysautonomia and any kind of relationships: if they can't tell you when they feel burdened, they can't handle your issues. Only a personal experience though, I could be wrong! And plus, I'm only a junior in college, so it's not like I have years of practice in this area. But do take it into consideration. But I wanted to say that I am "other"... I haven't attempted having a boyfriend since I got sick because I have enough struggles with my girlfriends and my family. I couldn't handle a dating relationship. So you should add it as a choice

It's okay, I usually come around here when I'm too sick to be doing other things like standing and walking As for chiropractics, I just started, but I find it clears my brain fog but makes my heart race and gives me chest pain.

seriously. who are we to deny the autopsy guy an exciting, once in a life time find? Especially when it saves the doctors the trouble of healing us. I have a question for you stacyRN that I think might be interesting for people... Did you notice any differences in weight or appetite? and did you try beta blockers? I heard they make things worse for pheos but they will give most pots people beta blockers. Just curious. Also... are you scared or relieved that they found the tumor? I always thought it might be comforting to know that most of this crap would stop once it was taken out... but how are you feeling about it?

If your local library subscribes to internet databases, or if you are a student enrolled in a university, you can get these articles through their sites. It'll probably be labeled "electronic resources" or something like that. If you can go on a database like Ebscohost, they usually have a medical themed section like Medline, and all the pubmed articles come up, but it's harder to search through things and you can't just look for a certain doctor or author. But it's free?

Thank you Stacy RN, I am definitely on guard about that. Like you, my blood pressure is all over the place and my norep. is high standing and about 300 lying down. Because I don't trust doctors anymore (not that they aren't nice people) I have done a bit of research on them for myself, and I doubt that it would be the case for me, or if it is it would an incredibly bizarre pheo. For example, people who have pheos often have elevated blood sugar levels. Sometimes not... but a lot. I also read that it may cause high levels of calcium! I have read that the urine testing is pretty useless if you have a pheo that gives out surges of catecholemines rather than a more regular stream. Because the body gets rid of them very quickly in your urine, unless you're having an attack or episode, urine tests wouldn't come back irregular. They also say the blood test is more accurate, because it's more sensitive to something(?)but if that is fine, you're more likely to not have a pheo than having a normal urine test. And I read this... "Dr. Neumann and his team at the University of Freiburg demonstrated that traditional blood and urine testing for pheos found only about 40% of the tumors." So I guess the best thing to do for the pots people is just wait to see if the meds help, or if things progress and get worse regardless of meds. But I think it's weird that you fit the POTS mold so well with the supine norep. normal and the standing so much higher. I would have assumed it would always be higher! I am so happy you found a way to start treating what's really wrong with you. It's a miracle you found it before things were worse. Thanks for stopping by to respond!

yep... never felt worse in my life! lol it was horrible. I ended up in the ER with IVs... Feel better soon

Okay, thanks! I just have no idea who to bring it to... my primary and cardiologist can't help me, but I'm scared of the mayo doctors... somebody new I guess? It's not like I was terribly surprised my results were ridiculously high, I've seen posters here with even higher numbers... it's just... that it's not normal and I want them to tell me why I should be okay with it. Even though I know there's nothing I can do. I guess I'm just way too picky. And super self-righteous that the pots guy told me I was not hyper-adrenic and I actually was.

So I had all my tests done and everything was normal-ish, that's fine. But the results for some test weren't back yet so they said they would send me a letter if they were normal. So the letter on the front says "everything seems within normal limits". But the results of the tests are flagged as abnormal and I can see they are not within normal limits. what the heck. All in all, it was only the catecholemines in my blood that are abnormal, which I hear is normal for POTS. But what should I do exactly... bring my results to my doctors here? Or... call or something? Or just do nothing?

Yes maam... they said I had narcolepsy because I can fall asleep so fast and was sleeping all the time! I take nuvigil which really helps. But now they say I don't actually have narcolepsy. Feels like it though, doesn't it??

People with Asperger's often have trouble with social cues or communication. that is the hallmark of the condition... if that helps And I love sleeping pills, but I get scared I will be addicted or that I will need help in the night and not be able to tell anyone or realize it because I am too sleepy. This has happened before and it freaks me out!

Huh, interesting! I work with kids with Asperger's sometimes. That kind of sensory issue is more like "I won't eat mangoes because I can't stand the texture, I can't wear shirts with tags because it rubs me too much, I can't be around too much noise because my mind doesn't filter it". The thing that happens to me is few and far between and started when the rest of these things started. There are just times when my heart will race uncontrollably and it just gets worse when there is stimulation. It lasts about an hour or two. I have heard people talk about things like this before on this forum But I love kids with Asperger's, they are so fun!

Ashelton80, I just started these things. I am super-duper skeptical that it will make a difference, but why not try right? I will let you all know if it works for me.

I'm sorry I keep asking you guys things, I'm just really trying to figure out what I need to worry about and what is POTS. So I had another pretty bad "spell" as they call it and I tried to notice what was happening. Do you guys ever just lay down with the lights off and cover your ears and try not to move? Like any slight movement, noise, light or any sort of stimulation makes your heart totally freak out? It's a lot like children who have sensory integration issues, I think, from what I have seen. What is that?? Some sort of adrenaline problem? I can't find much about it on the internet.

I remember I said this on that thread and I will say it again! When I discovered ibprofen, it was a gift from the Lord. It made everything better! But be careful. Even one year of long term use can screw up your stomach! That said, Yayyyyy! I am happy you're finding relief.

I felt that way for a while. Praying at night that the Lord could just take me home so I didn't have to live like this anymore. I think it's normal. I have only been dealing with this for a little bit, so I can't imagine how it would be long-term. What I did was invest my time into other people. I was a mentor for 5 girls last year dealing with incredibly hard things and it was easier to put my life in perspective. This year I can't go to school, so in trying to find things to do is an interesting process. Have you thought about rocking babies at a children's hospital? You get to sit down and it makes an incredible difference. Or finding a program with a elderly person's home to just sit and talk with them for an hour? If you are home bound, there are people who can come to you... mothers with children with special needs who need a break, people who would love a one-on-one mentor relationship... That's all I got for now! Sorry if it doesn't help.

Well, my family and I are on that road too... we decided chiropractor/ nutritionist/ physical therapy was the route to take. It is expensive, but the nutritionist is willing to work with you to figure it out through supplements/diet and whatever... you could try that?

I am sure this will work out! It would be a crime to deny this to your child, silly insurance people! You should ask them how they would feel if they couldn't walk on their own!

I am wondering this too... it seems like you only get one shot with the yearly physical thing...