roxie

I bet acting is exhausting having to convey emotions and stuff. I like to write, too. Even that takes energy. That what frustrates me the most, I want to stay occupied but I get SOOOO tired, dizzy, and nauseas. I've been trying to makes lists and seperate things into how I feel. Like when I'm feeling the worst it's probably easier to scribble and color compared to line drawing or writing.

This happens to me, my sleep study showed my heart rate crazy at night. A number of times it went over 200 and I'm guessing that's why I sweat. I was put on beta blockers at night and it helped a little but not enough so we adding clonidine for a synergistic affect and it'd helped a little bit more, but I still have sweaty & some sleepless nights.

Google "art journal" or "art journaling" I think you'll be amazed

It sounds like you like art journaling, azmusiclover! I think it's really fun but stick to doodle journaling, I guess.,paint takes to much energy to clean up. Snowdrifter, knittinga fine! I know how to knit and cricket, I think crocheting takes less energy.,

What are your creative outlets? Do you think it helps you cope? I've always liked crafty things even though I'm not super artistic. I used to knit and crochet a lot but my arms were hurting too much and I set it aside. I haven't felt like picking it back up but I've started doodling some even though its nothing spectacular. There are times it feels relaxing. But if I do it too long I feel sick. I've been trying to look into different techniques I use when I feel worse compared to better. Anyways, what do you find relaxing? And how do you manage to do it when you're feeling extra bad to stay occupied?

Cute! We used to babysit my cousins daughter (she was 4 at the time) my mom had her outside with sidewalk chalk and she drew this stick figure laying flat. My mom asked what it was . She said "tonya laying down". Hahaha.

I don't know anything about this but when I googled CCSVI it made me think of a new therapy I'm starting, it's called craniosacral therapy. It's about evening the cerebral spinal flow. Craniosacral work would be much less invasive http://www.upledger.com/content.asp?id=61 I Looked into if because of my muscle firing problems and muscle pain related to EDS but the thrapis thinks it may also help my autonomic problems. I've only has one treatment so I don't know if it'll help yet.

Definitely look into it and try puppy love, there are so many types of media you can use! My favorite is Alisa Burke! She even has online classes I want to try one soon.

Being admitted isn't going to do anything, drs don't know what drs don't know. And when they don't know it they blame you! You're best bet is finding a dr that is knowledgable in dysautonomia and its related disorders who'll look for the root cause and run the needed tests. For hat though, you have to research and likely travel. However, it might be worth it. Check the physicians list here and Dysautonomia Friend Finder on FB to see what is close to you and what people are saying about them.

Puppylove, have you thought about letting out your frustrations in an art journal? I've become interested in art journaling latily. It's really fun!

(((Hugs))) puppylove. I so hear you. I struggle with this myself. Since I've been sick for 15 years I don't miss my old life anymore, I miss the life I dreamed I could've had but it hurts all the same. When I was in HS all my friends dropped off & then when they saw me they stared or just looked away, it hurt like death. You have to allow yourself to mourn and let it out but not so much that it consumes your being. I've been trying to look for more activities to change things up and that don't take a lot of energy. Listening to music or audiobooks, YouTube videos, coloring etc. it helps a little but I'm still crazy bored and lonely. I'm also learning about this cfs pacing advice. http://www.treatcfsfm.org/menu-Pacing-7.html If you want to build up to activity start where you are, walking around a store is probably too much. Can you invite a friend over for a movie? Or can you go out for coffee? Brainstorm things that are less demanding. Maybe even make a list to refer to. As for friends, it's so tough, so very tough I don't know what kind of relationships you have right now but look at what they are, where they are, and what you can put into them or eliminate them. If you have unsupportive or critical "friends" don't be afraid to cut them out, they are draining you! If you have friends who text or fb you see if you can add a little more to it. Can they come over every other week? Every week? Or simply text more to keep you in the loop. Keep researching and searching out solutions. I recently learned about craniosacral therapy and am giving it a try. I don't know if its going to help but it's worth a try because it sounds like it could be something to add to my toolbox. And lastly thus is a post i copied from fb about advice Mayo have a girl on getting stronger. I'm sllloowwwlllyyy working towards it - work up to 30 minutes of continuous and vertical cardio exercise daily (eg, running, elliptical, rowing), - increase daily physical activity (eg, walking, chores, stretches, yoga) to 4 hrs/day -and then try returning to school for 1-2 periods/day. - we had never gotten such good specifics before, either, which is why we are feeling so positive. They said the 30 minute cardio exercise is critical for POTSies; this is what makes the veins do a better job of constricting and getting the blood moving all day long. It has to be upright cardio, so running, biking, elliptical, stair stepper, aerobics--they all count. They came up with a plan for The physical activity is to prevent deconditioning, which is very common in POTS b/c you just feel so miserable you don't want to get up and do anything. It is separate from the cardio exercise, and includes anything that gets you off the couch/out of bed but isn't continuous cardio. This is why my daughter's horseback falls under this; she can't expect her horse to canter for 30 straight minutes but is physically moving when she's riding. They went thru with us what she likes to do and that's how they came up with the list of physical activity for her, so the list will be slightly different for each person. They said every hour she has to get up and give 5-15 minutes. From what they told us, I'd say try to increase by just 1 minute every 2-4 days, and make sure you're doing upright cardio that is fun for you. And try to get up every hour and just move, even if it's just to take a walk thru the house for a few minutes

It is sad you have to recover from the illness and the medication. Some of the side effects they say are crazy like full body swelling. Lol!

Hahaha, misstraci! There was a commercial for something once that said side effects include "nausea, fainting, racing heart.." And my mom says "so they'll feel like you all day."

That's what I was going to say misstraci! Doesn't it say that oh those type med commercials?

That's what I've experienced. Like it might take a minute linger to get high but we're been discovering I have muscle problems so I don't know if that's related to why its so hard for me to exercise as well.

Yes. Mine is pretty severe. Look up Dr Alan Pocinicki's video on autonomic sleep disturbance in EDS. Mine is constantly spiking over 190 and 200. Good luck

Def need them looked at. I had them impacted and taken out with pots. I talked a lot to the surgeon before and they were very careful. He didnt want to put me to sleep even though they were impacted so I ONLY had novacaine was a completely awake. I had an EKG & bp monitor,iv fluids, and extra nurses. It wasnt fun and I felt a lot of pressure during it but I survived and then was super diligent with antibiotics and cleaning afterwards. The dr also asked me himself if I would try and not take anything more the ibuprofen because he wasnt sure about pots & pain meds. He said he'd call me the next morning see how I was and if couldn't do it then he'd give the script. I wanted more than ibuprofen but I toughed it out with ice and ibprofuen. It took longer to heal but ultimately I was ok with precautions. Be honest about your problems and if they push you find someone else.

I've had two sleep studies. They are very awkward but we found u have an extremely crazy heart rate at night. My heart consistently spikes over 190 & 200 but will also drop to 30 in a matter of seconds and then spike back up again. No wonder I'm so tired.

Katy you have EDS right? Are you hyper mobile? I get pain around my diaghrphrsm a lot. I have pain everyone and recently described to give myofascial release a try. Yesterday was my first appointment, it was an experience and the jury is still out. But she told my diaghrphram was extremely tight. It's almost like the contractures that can happen in EDS built up around my diaghrphram. She thinks in time she can lesson it. Is that a possibility for you?

I've been sick since I was 12 and have never really been able to keep up friendships very long. Sometimes I have acquaintances that I see every once in a while, email and maybe text but nothing real. I have my parents that's about it, it's very hard for me being in my twenties I want to be normal, I want to be independat and I want to have friends but everything it takes to take care or myself takes all my energy, I dont have the ability to get out and meet people. I've been frustrated about it a lot lately because I feel stuck and trapped but I haven't figured out how to change it.

How often do you take it? My dr says it works best every three hours. But ofcourse you crash at night because he doesn't let his patients take it after 4 pm.

Awesome, Alex!ci never thought of posting these over here but there are the past few years conferances PDF notes on the EDS site. Sometimes a little hard to read but still good, 2012 http://www.ednf.org/index.php?option=com_content&task=view&id=1982&Itemid=88889194 And 2012 http://www.ednf.org/index.php?option=com_content&task=view&id=2219&Itemid=88889285

I'm impressed! And excited for you. I take midodrine. I've debated if I should go to him (or another eds specialist) but being so far away is rough. Your experience puts another check mark in the yes column though.

I believe you! My dr had me try that years ago. It has a vasoconstrictor in it. At least it did before they changed the formula. Maybe it still has some type of vasoconstrictor in it that works for you?!

I'm kindof in a similar situation. I'm in my 20s, single, & live with my parents. They take really good care of me but the part of me that wants my independence and a normal life roars all the time. It's really difficult. My parents are in their 50z but I have wondered and worried a little about what'll happen when they can't take care or themselves? I don't have an answer except to pray & try not to worry about the future. Along with continually looking for treatments and plugging away. I also get the too tired to dating issue. Having been sick since I was 12 guys haven't wanted much to do with me. So I have my doubts on getting married. When my brother got married it hurt so bad & when he moved into his own house I cried too. My brother doesnt t talk to me much. My mom says she assumes he doesn't know how to handle my illness. So if something happened to my parents I don't know what I'd do. I know there are independant living programs and social services to help if need be.