jesse1919

Hi all, Sorry it's been awhile- I had a bunch of other little things to take care of and there's just no time in the day when you're sleeping through 1/2 of it! Your right Steph, I would get the best care if I grew gills! I think I should grow a tail while I'm at it. You're right about side effects of meds, but I figure it's worth a shot. Beth- wow sounds just like me except I wouldn't say that I "can't" sleep at night, I just don't want to go to bed because I actually feel best just before bedtime. I think that's because my pulse is lowest then because my adrenaline is naturally higher during the day and drops at night. If I'm worried or anxious at all then I do have a hard time falling asleep. EM- nice to meet you. hope you're right about it disappearing suddenly. KathyP- sorry it took so long for your diagnosis. 2 months seemed like a long time for me. I am feeling better now that I'm drinking alot and walking more. I really didn't think that would help as much as it did. My OI is pretty minimal and I usually make it through the day without a nap. The only thing that hasn't changed is sleeping 12 hr/ day. Hopefully time and/or meds will help that too. Well, I have big things ahead of me. I'm flying back to L.A. tonight. I'm not looking forward to flying. It was not fun on the way out but it should be better this time I hope. Then I'm going back to work part time starting Thurs. I think I'll be able to handle part time. I'm just worried that I won't get back to full time and I won't be able to afford my apt by the beach and I'll have to quit my job and move back in with my parents and never have a girlfriend again and die alone.... but maybe I'm getting a bit ahead of myself? I'll try to survive my flight first. Wish me luck. Talk to you all later. - Jesse

Hi all, Well, you've probably heard a similar story before... I went to Mayo and got a POTS diagnosis and now I'm looking for a doctor in LA for follow-up. I found the two below but haven't tried getting an aptm yet. I can't believe there are only 2 POTS doctors in LA?! It would be really great to find one in the South Bay area (south of Santa Monica, west of Long Beach). There must be 1000 doctors in this area. -Jesse Dr. Frisca L. Yan-Go UCLA B200, 300 Medical Plaza Los Angeles, California 90095 310-794-1195 POTS, NCS, PAF/Secondary Autonomic Failure, MSA, Migraine Syndrome, Chronic Fatigue from www.ndrf.org William P. Stuppy, M.D., F.C.A.P., F.A.C.P., F.A.C.G. 1136 W. Sixth St. Suite 401 Los Angeles, CA 90017 Specialty: Gastroenterology; Heart rate variability (HRV) and esophagogastric pH. GERD (gastroesophageal reflux), IBS (Irritable Bowel Syndrome), Panic Disorder, and PTSD.

I guess you could say POTS is basically a blood flow problem. Too little flow to your brain (while standing) and you black out, get a headache, brain fog, fatigue... Too much blood pressure (laying down/ adrenaline sensitivity) and you get a headache, pain behind eyes, irritable, fatigue... It's plausible that improper blood flow to the brain could be a contributor to virtually any brain disorder.

Hi. Thanks for the responses. Wow Stephanie I guess I should be 'glad' I didn't get POTS in college. ADD kicked my butt enough. I know all about experimenting with meds- think I tried 8 for ADD. A gallon! holy crap I'm gonna grow gills I'm doing maybe 1/2 gal without much effort. Mayo sort of left me hanging. alergic to adrenaline? never heard of that. I wish they would have done those tests. The doc signed my FMLA (family medical leave act) form finally but that only allows for 12 weeks and that runs out in a couple weeks so I'm suposed to go back to work part time- but I still don't feel much better. I need to find a doc in CA to work with meds etc. (I'm at my parents in WI now.) There's one listed in dinet faq thing but naturally he's not listed in my insurance and downtown is an hour drive in traffic- I'll call anyway. Yes- it's only been a week but Toprol (beta 1 blocker) seems to make me a bit more tired/ brain fog if anything. Maybe a nonselective beta 1 and beta 2 blocker would work better because it would help constrict arteries/veins not just slow pulse so BP stays higher??? - Jesse

Hello, I'm new and I'm so glad I found this forum. I'm sorry to see so many sick people but maybe we can help eachother. Well, here's my story... I'm 27 male. I got my masters in engineering and have been working full time for a couple years. I was perfectly healthy (except ADD which was under control) UNTIL I woke up one day 3 months ago and I was soooo tired. I called in sick and figured I had the flu. I hadn't been sick before this for a long time. I didn't have any other symptoms- just dead tired. I tried to go to work the next day (afternoon) but I just felt so sick. I was seeing stars after walking slowly up one flight of stairs and decided I better go home. I slept a ton and was eating fine but didn't feel better so I saw a doctor later that week. She did all the basic tests- chest xray, blood, urine- but had no idea except maybe my ADD med (Strattera) was causing it. I thought that was crap becasue I never had a problem in the 2 years I was taking it. So she sent me to an endo. The endo did blood sugar, thyroid, and cortocotropin stimulation test- all normal. So she told me to eat my vegtables and excercise. Excersise!!! I can hardly stay awake after 12 hours of sleep! So I went to a infectius diseases doc. He tested for mono and lymes - negative- and had no other idea. So then I said enough's enough and went to Mayo in MN. I didn't have a referral for Mayo so I would have had to wait 8-12 working days, sitting in the lobby all day every day except 3 of those days until there was an opening, BUT while I was talking with the triage nurse my pulse was 130. She sent me to the ER where they did EKG (normal of course) and tested orthostatic pulse/ pressure which changed alot but they just gave me a saline IV and let me go. They did schedule a follow-up appointment the following week so I avoided the usual wait by going to the ER. While I didn't like the Mayo doc's lack of concern (just like the other docs), she tested everything- head MRI, more blood tests, 24-hr urine for pheochromocytoma, phychiatrist, tilt table and echo. Everything was normal except the tilt table- which wasn't very fun! Laying down pulse 120 press 130 (over?) standing pulse 150 press 105 (over?) I blacked out for a second when I did the breathalizer thing laying down. I didn't faint upon tilt but felt like crap. The doc said that either I got a virus or it's my Strattera causing me to be too sensitive to my own adrenaline. She gave me Toprol, said I should eat lots of water and salt, try to walk more, go back to work part time, see a local doc to adjust medication and see a neuroligist if I don't get better. Well, that's my story to date. I'll add more and read more tomorrow when I'm more awake. Take care.