Roselover

Dizzy, I'm there with ya girl... fatigue wise. I almost didn't answer cause I takes way more effort to type than to just click my little mouse. Too tired to chew - yes! My family say they see it in my face muscles... to tired to hold any expression. No.. no cause has been identified for me Just wanted you to know you're not alone - wish I knew what to even do! (((HUG))) ~Roselover

Both my husband and I have been praying for Melissa and we specifically prayed for this port surgery yesterday. So glad you posted an update Kristen. Thank You! Love you Melissa! ~Melanie

Hi everyone, I didn't even know they had scheduled me for a follow up appointment after I saw Dr. Grubb last March. But I got a call yesterday telling me I am scheduled on Feb 5. I live on the West Coast and traveling is not an option for me now. I am going to be calling in a just a couple min to cancel the appointment. I know some have been able to snag those cancellation spots if they call right away, so if you're looking for an appointment with Dr. Grubb, call soon to see if you can get my spot. ~Roselover

I was prescribed Provigil, by my Neurologist, for fatigue. My insurance denied it. My doctor said she could keep me stocked with samples. Unfortunately, I worked well for me for the first two weeks. Then it caused my POTS to get worse - mainly my heart rate issues. Got so bad I had to stop the Provigil. I now know - after trying several other similar meds - that my body reacts this way to any stimulant. It begins feeling better and then quickly takes me to tachycardia. I do much much better on CNS depressants. Don't really know what that means -- but at least I'm beginning to understand my body. ~Roselover

I'm going to put this info on my blog in case some of my non-POTS friends see it! Sadly - I don't have cable either so if anyone can record it and has the capabilities to share let me know! I'd love to see it! And share it! thanks for the info!!! Roselover

Wow, interesting that you posted this. I was just thinking about it again the other day. This is the same for me - I'm at 5.5 years of illness, and though I have very severe fatigue - I almost never catch something - even when it goes through the family. If I do, it is very light and short lived, while others in the family have it bad. I do think I have less exposure - being home so much. I've wondered the same thing as wareagle... about the unidentified autoimmune overdrive. But I don't fit into any typical autoimmune disease category so the doctors aren't interested. Very good question - and interesting that there is a section of us that all experience this!

Welcome Kendra, There are a lot of griefs along the path of POTS and it's good to be able to share them and cry some. It helps move on - which I think you're seeing. I can really feel for you when you talked about "packing up your classroom" - it almost made me cry - just bringing back the reality of the losses. Glad you've found a place to help you not feel alone and keep learning. You'll see me pop in every once in a while... I don't write as much as I used to, but I still check in and try to keep up on what's new. I just wanted to say "Hi" too!

ME TOO!!!! (yelling and stomping my feet... only in my head cause I'm too tired to move more than my fingers to type this) I HATE it!! I have not found answers either and don't know where to turn. I've debated some of the CFS treatments out there - but don't have the energy to keep chasing down rabbit trails. I was at Vanderbilt recently. They are beginning to study the fatigue because they are finding that 50% of their POTS patients have severe fatigue. But they only have guesses right now and no help. Both Vandy and Dr. Grubb suggest trying some of the typical stimulants used for ADHD... like Adderall, Ritalin, and Provogil. I've tried them all and they make me feel better for a week or two and them my body goes into over drive and my Heart Rate is out of control. So those options are out for me. If anyone ever learns anything or gets ideas on how to deal with it... many of us will be very excited. But for now, I just try to cope best I can. BTW, Bee... I get periods as long as 6 months before I get a short period of relief. I just had a 4 month one... with a 10 day one week reprieve and now headed back into it. It's so hard on the emotions - not knowing when they will hit and how long they will last. ~Roselover

I found this quote... that best defines my fatigue: "This illnes is to fatigue, what a nuclear bomb is to a match. It's an absurd mischaracterization." Laura Hillenbrand (author of Seabiscuit) Whether or not it is my dyautonomia or an indication of the cause of my dyautonomia, I have yet to figure out. But it is understood by the specialists to be a common complaint. ~Roselover

I've been to Vanderbilt. But if you search "Vanderbilt" and look for "Vanderbilt Chronicles" by Sunfish you'll get a great description of what it will be like. They tend to tailor the tests they put you through - but it will also depend on what they are currently studying. But you will get a Posture study with catecholemines measured and an Autonomic Reflex Test. Then you will probably do several medication trials. You get the results and info of what you tried after you are done with your time there. I really suggest you read Sunfishe's post and you'll have a really good feel for what it's like. ~Roselover

Dizzy... did you end up coughing as well? My laughter seems to often end with a coughing attack too - like I have sudden congestion in my lungs... as long as we all were comparing, I was just curious. ~Roselover

Imitrex did not work for me... but then my neuro prescribed Frova... and that works great for me. I believe I had a "cluster" headache... though my neuro brushed it off as a migraine (she wasn't listening very well). When I had it, it was through the night.... I finally took Frova and it helped that one too. I woke with a bloodshot eye - right where the pain had been - like a skewer going through my eye and head. But the Frova helped that one too!

Dizzy, Just had to click on this topic! Yes... I get symptomatic from laughing too! Not as bad as you describe... but head pounding, flushing, tachycardia... Like Sophia and Firewoman said - I also get it with crying and singing. I'm sorry your great moments of enjoyment ended like this! ~Roselover

Very good advice Melissa - thank you. I'm having some of this problem myself lately... and I have wanted to just ignore it. But you reminded me of the reasons not to let it go on. I do have sensation to go... it's just not until I'm extremely full and then I can't release it all. I had a urology study done a year and a half ago and I totally agree - not the best test - but not even near the top of the worst!!! :-) Thanks Melissa! ~Melanie

Well, I don't have any good advice on dealing with your office. I thought of a heater at your feet - but it seems you've already thought about that. But - I CAN validate your cold intolerance! Once I'm cold - I do not warm up easily and it does throw my body into a tizzy fit! And my temperature does not always match the other people in the room! I use a lot of rice bags - Linen bags filled with rice. If you microwave it, then the rice gets hot and I ue them on my feet, hands, under blankets etc. You could use this in your office too - or maybe a heating pad - that helps me warm up to. ~Roselover