Notgivinup

YES, I can totally relate. You said: I rarely have anyone that can help me make important decisions. Not thinking clearly is like torture Torture it is. All day long. I have to lie down to do bills, and some days even that only helps a little. I don't know. I just started taking iron, and got a rowing machine today. I've always hated to exercise, but maybe it'll help. I'll keep ya all posted. Wish I had some magic words.

Sorry about the double post. Told you I was brain dead!

You took the words right out of my mouth! "I guess I feel like I owe an explanation to everyone, because I know sometimes I ask questions and then haven't been the best at responding or participating in other's posts. I apologize, and hope to get better at responding." I too haven't been feeling "better", but am sick of health related stuff. I still read often but am usually too tired or brain dead to respond much, and for that I also apologize. On the iron thing. I'm sooo glad someone else has the opposite effect from it. I thought it was just me. I just started taking some because although I've not been tested the proper way, I'm sure I'm low. It is not normal to need to sleep 12 hours. I was found to be anemic when I was pregnant, and my mom has always had low iron. It's only been 3 days, but already I'm less tired. Still have POTS though. I don't really have any advice, except to eat before taking them, and someone else said Cream of Wheat and Black Strap Molasses, those are two great ways to get more.

You took the words right out of my mouth! "I guess I feel like I owe an explanation to everyone, because I know sometimes I ask questions and then haven't been the best at responding or participating in other's posts. I apologize, and hope to get better at responding." I too haven't been feeling "better", but am sick of health related stuff. I still read often but am usually too tired or brain dead to respond much, and for that I also apologize. On the iron thing. I'm sooo glad someone else has the opposite effect from it. I thought it was just me. I just started taking some because although I've not been tested the proper way, I'm sure I'm low. It is not normal to need to sleep 12 hours. I was found to be anemic when I was pregnant, and my mom has always had low iron. It's only been 3 days, but already I'm less tired. Still have POTS though. I don't really have any advice, except to eat before taking them, and someone else said Cream of Wheat and Black Strap Molasses, those are two great ways to get more.

I wonder which one I am. Can someone please give me their opinion, or best guess. I'm too cerebrally challanged! Female: 110lbs. 5'5" LOW BMI (skinny girl) Standing nori- 987 B/P HR. NORMAL supine HR jumps immediately upon standing-30 bpm or more-120-130. B/P decreases immediately upon standing, but sometimes goes high. Diastolic is usually a bit high, (80-90's) Except after resting supine at least 30 minutes. Hypovolemic 14% less blood volume Small fiber neuropathy dx by skin biopsy CC no treatment & no symptoms. Mild mitro valve prolapse-no symptoms Main symptoms---brain fog--constant lightheadedness-standing. Short term memory, bad. Confusion, unable to process information at normal speed. BB did not work-HR went down but felt bad. Adderall helps BUT only for a few days (10-12) then extreme muscle tightness, knots, stiff neck. And it's dehydrating. It's my double edge sword medication. I can get a few semi- good days out of it, then suffer terrible withdrawals and body pains when I have to go off. I hate it however it IS a potent vasoconstrictor. AND it improves mood and energy. (Speed will do that). I never see "pooling" in legs. But compression stockings help. I'm on zyrtec and adderall (off and on). Tried midodrine, mestinon and florinef. Sometimes when I'm peeing a lot, I'll take 0.1mg. florinef. Stops excessive peeing. Don't feel any symptom relief. I can take a hot bath and not feel bad. This one is confusing to me. Perhaps because I'm lying down? Hot weather however, makes me worse. So confusing. Anyone? Best guesses. I'm seeing yet another new neurologist in June. I don't have much confidence he'll be able to help either. You guys know more!

Not sure what's going on with my neck. It's tight A LOT. I was dx with disc degeneration about 10 yrs go, way before POTS ever started. But the pain from that kinda went away when I stopped working so much. (Pet groomer). And some phys. therapy. One of my first early symptoms of POTS was waking up with a headache every morn. That just went away by itself too. I also was in a car accident. Well, a semi-truck hit my 2 yr. old and myself while we were stopped at a stop sign. The impact, I guess, was mild because my air bag did not deploy. We were not hurt, and I did not go to the hospital. I was soooo scared for my baby though. I had to remain calm and act like everything was fine, when inside I was shaking and angry, this guy could of killed my baby! I didn't want my son to be scared, so I acted like nothing happened. Police & ambulance came and I asked the police to take us home. We were only a couple miles from home (on our way to Wal-Mart). I made it seem "fun" to ride in the police car. While internalizing all my real feelings. They drove us home and towed our car. I never thought about the possibility of whiplash. I felt physically fine. My son was not hurt. And for that I was grateful. I just wanted to forget about it, and let insurance fix the car. I still wonder to this day if that accident set off my POTS, because it was only a couple months later when symptoms began.

124/77 HR. 77 But.....and get this, I feel awful. I know somewhere this was discussed before, but of course with the way I feel right now, I can't find it. Why do I feel so symptomatic. Grrrrrrr. I hate this disorder!

Just thought I'd bring this old thread back because I LIVE IN OHIO. Youngstown to be exact. Any one else?

I actually crave raw onions a lot. I've even asked myself that question. Why do I crave raw onions. I thought maybe it was some kind of vitamin deficiency, even looked it up, but don't remember what I found. I don't know if eating them ever made me feel better or worse, so many variables with POTS. Tonight I'm going to make steak and onions. Maybe I'll see if I notice anything. BTW no doctor has told me with any certainty which kind of POTS I have. One said definitely Hyper-POTS, another said no.

My experience with Chelimsky was not a good one. Wish it was. He'd only see me once, then pushed me off onto his nurse practictioner, Brian ? can't recall his last name.They ordered a ton of tests for me, but also didn't seemed concerned with follow up. I had to call a million times. I guess I just don't seem sick enough to these people. He did say I was low on Co-Q10. Told me to get some and take it, which I did for two months and felt no difference at all. Maybe even worse.

Sugartwin, your doctors comment made me laugh. (as much as one can about this stuff). "Rare diseases run in packs".

Had doctor check for PCS. I have yet to have my follow up visit with him, but he didn't mention finding anything like that to my husband. As I was still groggy from surgery I didn't see him personally. The only thing he found (that I know of so far) was tons of endo and an ovarian cyst or two. I'll update more after I see him.

I just had a ton of endo removed. I'm trying to find a correlation between having endo and POTS. My big hope is that by fixing the endo, it'll help my POTS. I know I'm grasping for straws here, but it seems my POTS started at the same time I started having bad periods again. Exactly 2 years after my son was born. Maybe, only time will tell if having this surgery will help. My gyn said he lasered off TONS of it. He could not however tell me if there was any connection.

I'm having a D&C tomorrow morning under general anesthesia. I forgot (brain fog), to NOT take my adderall today. I don't want to postpone the surgery, as I'm in so much pain. Adderall xr has a half life of 10 hours. Should i be concerned? I'm afraid if I tell them, they will make me wait another month. I can't seem to find any info on stimulants and surgery. Please tell me I won't have to postpone!

Unfortunately for me, the opposite usually happens. I feel kinda normal.

Welcome, and sorry you have to be here. I know exactly how you feel when you finally come to the realization that your life may never be the same. It's heartbreaking, and you have to grieve. I'ts been over 3 years for me now. I still keep trying. I do seem to have some very sporadic semi-good days, with lots of bad days mixed in. I wish I had some words of wisdom, but I don't. I "think" I'm starting to adjust to this. You will too. And you're not alone. You'll always have all of us. It's funny how many people were so physically active before they got sick. I was the type of person who never sat down. Didn't watch much tv. Loved to just be doing things, anything. Anyway, I'm rambling and need to get to sleep. Just wanted to welcome you, and also remember people DO get better. Maybe never exactly the same, but with perseverance can still lead a good, fun life.

Also was D deficient. Can't remember the numbers now, and I made the terrible mistake of LEAVING my medical records with one very busy doctor. I should of gave him copies, but I thought he was going to be my new POTS doc. Now I don't know how to get them back, or how long it will take. Ahhhhhh, just another frustrating thing I have to do. Anyway, I take 2000 IU. Actually lately I've been forgetting.

Thanks everyone for your replies. Today I did the same thing as yesterday, but did NOT feel good. My newest revelation....YOU CANNOT STOP ZYRTEC cold turkey!! I felt ok yesterday because I still had enough zyrtec left in my system. Today I didn't have enough, and had WITHDRAWALS. Headache, nausea, terrible brain fog, all day. Once I realized that, I took one and within 40 minutes headache and nausea gone! Nowhere does it tell you stopping zyrtec will cause withdrawal, but a little google search and you'll find thousands of people who say it does! Most people get intense itching upon stopping, but for some.............headaches, and nausea occur. I think once the histamine receptors get use to the med. and then you just stop, histamine goes crazy. That's my un-educated, real persons, theory. Soooooo, will try again tomorrow, adderall + zyrtec. Nothing else. I just LOVE being my own guinea pig / lab rat. Notgivinup.

when my heart rate is high (126) standing. And B/P is low 108/82. My diastolic is always high. I'm standing in the kitchen tonight realizing that I feel pretty good. Clear headed, not dizzy. I take my B/P & pulse, expecting it to be somewhat normal. But NO, it's not, and yet I feel fine!! This stuff is driving me crazy. It makes no sense. I'm playing doctor with myself since it's been 3 years and no one's been able to figure me out. This morning the ONLY med I took was my cymbalta. I've stopped everything else, but added back in adderall. I took 20mg. around 3:00. Felt pretty good shortly after that kicked in, and the rest of the night. Weird. Oh, wait I forgot I also took two aleve for back pain. Help..............Please

lavender, I take neurontin at night only. It's for restless leg syndrome, which I've had forever. It really helps me sleep. I've been on it for over 15 years. I've never had any side effects whatsoever. Maybe that would work for you?

Kay, I'm going to go along with you and avoid gluten. I'm so sick of being sick. Tomorrow I'll eat the same thing for breakfast, lunch, and dinner. I'm willing to try anything. Today I didn't eat all day, and felt generally crappy, BUT at 6:00 I had some peanut butter crackers(wheat). About an hour later I felt WORSE. Tired, depressed, slight headache, and mild IBS symptoms. So who knows. Will post my results along side of yours.

Sex? Huh? Honestly, I know it's important, but I've not the energy nor the desire. I'm 46 been married 23 years, and probably in peri. Sad isn't it. Esp. for my poor husband. He's soooo patient and understanding. Ehhh, maybe I'll get my hormones checked again. Although I don't know why, they ALWAYS tell me they're normal.

I know, I was thinking the same thing, but am to afraid to try. Eric........Rama.......what are your thoughts?

When I go for my lap procedure I'm going to ask him to check for pelvic congestion also. I don't know if I have anything like that, but I do have varicose veins on the inside of my right thigh, (quite large), My mom has always had many, many, many large varicose veins all over both legs. Poor circulation is something she's always complained about also. Any connection IDK, but maybe. Anyway, I go for my surgery April 29th. I'll let you know what he says.

Thanks everyone. I'm actually looking forward, in a way, to getting this done. At least the severe period pains will be gone. Imt, wow adenomyosis! I've never even heard of that. Wouldn't be surprised if I had it. Bella, I haven't been on florinef for a long time. i did try it a year or so ago, but it really didn't help. Just made my B/P go too high. Thanks all for your kind words.