juliegee

Lavender, Are you on florinef? Florinef is known to drain potassium out of the body. Many on florinef have to take a 8mg slow release potassium supplement (prescription only) as balancing electrolytes can be tricky. Julie

Donna, If I were you, I'd be looking for another doc- someone who'll work with you to manage your regimen to get you feeling better. Maybe post on this site, ask members for a good doc recomendation based on where you live. A good doctor should be working with you to tweak your meds or try different ones until you get to a more functional place. Not sure if the sweats are due to excess weight as I'm tall and thin and am able to exercise. Could be hormonal as I'm mid-40's, but I don't have any other sign of perimenopause. I just thought the sweats were a "potsie" thing. I'm keeping you in my prayers, Donna. Julie

Donna, I also have sweats every night. I wake up with a soaking wet T-shirt and it makes me soooo cold. But, unlike you, my symptoms are pretty manageable right now. Your symptoms sound really severe. I know you've fairly recently gotten your pacemeker. Is your cardiologist managing your treatment? Whomever is, needs to know how badly you are doing. I wonder if a change in meds would help... Hugs- Julie

Yep. I was going to recommend that you look into Ehlers-Danlos Syndrome (EDS). Google it. I know that there is an excellent EDS website. That's what he seems to be implying may be the cause of yor POTS. Julie

Yep. That is exactly whatt my PT says about POTS/NMH patients. We are in a constant state of medical "shock." It is as though we are loosing blood volume through a bleed, but we're not. Great research! Julie

I'm sure things will go very well for you. I recently had a GREAT experience with versed during an endoscopy. My GI was older and very experienced. I recall the nurses spraying a numbing formula into my throat and then my doc pushed the versed into my IV and I recalled nothing else. Ages ago, (fifteen years) I had an ERCP (simliar to an endoscopy but a bit more involved.) The GI was very young and inexperienced. I had a bad reaction to the versed. I was very awake when I swallowed the tube. It felt weird, so I pulled it out, pulled out my IV and was very non-compliant. They kept on giving me more versed, which made me crazier. The doc eventually gave up on the test and sent me to another hospital where they performed it under general anesthesia. I totally blame my reaction on the young doc's inexperience. Please tell me that you are using a very experienced GI. If so, you have nothing to worry about:-) When's the big day? I'll be praying for you. Julie

My son's HR was more like 37BPM and it seems to have been caused by a SIBO (small intestine bacterial overgrowth.) Once that was treated, his HR went back to his normal 50-60BPM when resting. He is still on .2mg of florinef and there was NEVER any evidence that the florinef caused the low HR. BTW, he doesn't have POTS, he has NMH. The florinef increases his blood volume to allow him to function almost normally. W/O the florinef, he was fainting constantly and couldn't do any cognitive work, i.e. schoolwork. He was out of school for a year. He's back to school full-time and is getting straight A's. Florinef has been a miracle for him. I pray that the BB and florinef combo (once you work out the dosage) will be YOUR miracle. Hugs- Julie

Thanks for the advice, Momdi! I sometimes have to take magnesium to get going, in addition to my miralax and colace. Combining it with calcium as a great idea. Julie

Wow! Quite a change for YOU. I would definately let your cardiologist know about this change ASAP. My son's HR has dropped into the 30's before, when he was sitting. (I was just doing a weekly check as he's on .2mg of florinef.) I rushed him into the ER and they weren't impressed. He was asymptomatic at the time. But you ARE having symptoms- shortness of breath. I'd probably try to page your cardiologist ASAP. Keep us posted. Julie

Hi Guys, This is sort of a frivolous question, but I was curious. I know that the blood pools in our feet and legs. I have spider veins on my thighs and a few on my calves. I wondered if that pooled blood sort of seeped through and leaked out forming those tiny red spider veins. (Excuse my lack of medical terminology!) I have significantly more of these than my non-POTS friends. They're so ugly! I was wondering if this was a "potsie" trait. How about you guys? Gorgeous "gams" or a road map? Julie

Hi Dayna- No, I don't take calcium supplements right now as I am suffering with really serious constipation and calcium makes it worse. I try to get calcium through my diet and I walk a lot (weight bearing exercise!) And, yes, Thank God, IMT is covered by insurance. You actually need a prescription from a MD before you start. I can E-Mail you Dr. Peter Rowe's asticle advocating it if you want to show it to your doc. I showed it to my internist, who wrote my prescription. I'm so glad you're trying some new things and I PRAY they will make you feel better. Hugs- Julie

Oh Donna, I don't have much practical advice, I just wanted to pass my love on to you. I, too, am the Mom who does it all. Not just for my child, but for anyone else's who happens to be hanging around. We are rarely without other kids to feed, house, etc. When I am well, it's great. BUT, when I'm not- it's so hard. Other kids and parents don't easily "get it. I really feel for you. You are so important and valuable to your boys. They love and need you so much. Teens/boys have a hard time expressing that. Your boys just want you to be normal again- if it were only that easy. You sound like you are doing such a great job with them. I have a unique situation as my 14 y/o son also suffers from an orthostatic intolerance and GI motility problems. If I feel like I'm going to pass out, he tries to give me helpful hints. He's as "sympathetic" as a teen can be. You need some of that from your boys! Maybe try to see if you can enlist the help of a close friend or family member to try to explain to the boys your limitations. Let this person try to organize a chore schedule, etc. Then, when it's offered, accept help from those around you. I'm keeping you in my mind and heart and will be thinking and praying for you. Julie

Hi Dayna- "Integrative Manual Therapy" or "Manual Therapy" is a special types of PT that Dr. Rowe prescribed for Mack. He did it weekly for a year and it really seemed to help him. He's back to school fulltime. Since I've come down with GP symptoms, I'm doing it too. It seems to be helping as my bad days are getting fewer and fewer. Google it and try to learn more about it. The PT simply places his hands in prescribed patterns on various parts of your body- this is in an attempt to unblock or open up the body's natural healing process. It's very simple. For the most part, I just lie there. Sessions are one hour in length. I was pretty skeptical, but Dr. Rowe was adamant AND it seems to have helped Mack greatly. Bone spurs in your shoulders are common with rotator cuff injuries and indicate too much tension and rubbing of bones, muscles and ligaments- all really common with orthostatic intolerances/CFS/Fibromyalgia. Manual therapy could definately help with this, maybe in conjunction with traditional PT. I'm sure the same practitioner could do both for you. I've also had horrible rotator cuff problems and remember the PT having me do exercises, etc. They helped, but it takes time. Dr. Rowe also insisted that Mack give up all dairy. He showed us studies that indicated that patients with orthostatic intolerance and GI symptoms (YOU) should try a total dairy-free ban for a three week period to see if there is an improvement in symptoms. Mack and I both did this and have been dairy-free for over a year now. I saw a decrease in reflux, etc. But, most importantly, the inflammation throughout my body seemed to decrease, and I had NO more headaches, neck or shoulder pain. Dairy-free is hard at first but I will NEVER go back to dairy as it increases my daily pain and tummy probs. Most importantly, don't give up, Sweets! Things are tough now, but I know they will get better. Try new things. Don't accept your new doc's grim prognosis. Too many of us (with genetic origins) have gotten better. I know you will too. Hugs- Julie

During my 40/? reading, the pulse-oxygen clip on my finger had stopped registering. My whole body was freezing. A tech got a pulse in my neck (115) and got the LOW reading with an automatic cuff. He even repeated it several times. Lots of alarms were going off. I was in the ER because I was dehydrated following an obstruction. I hadn't been able to eat anything or drink more than a sip or two in 3 days. Not a fun experience. Julie

Oh Melissa- Enough already! We love you and need you here. Hurry and get well. I am sending lots of love, prayers, and healing energy your way. Swim home. Julie

Oh Dayna! I feel your discouragement....but I am hear to try to cheer you up. I KNOW my POTS is genetic. My Mom, Grandmother and son all suffer and I am so much better than I have been. I have had periods where my tachy was so out of control (180-200BPM), I could barely leave the house for fear of an attack when in public. Major anxiety with this! I've had unbearable headaches, neck and shoulder pain. Somehow it's all related to the autonomic dysfunction...CFS, fibromyalgia. PT can be helpful. I think I'm a little older than you are- I'm 44 now. Maybe age has mellowed this whole thing a bit. But, Dayna, there is sooooo much HOPE. My tachy is under control, subsequently no anxiety. I live with very little daily pain. A dairy-free diet and Integrative Manual Therapy (a la Dr. Rowe) have helped with this. I just have to remember to take my meds, drink like a fiend, and rest when I'm pooped. I also find exercise helps so much. I try to walk a few miles every day. I started with a block at a time... Don't give up, Dayna. We love you here. You have three beautiful bright shining faces that are your best reasons for staying hopeful. They need you and we need you, too. BIG HUGS- Julie

Hi Donna- Thanks for your help. I think my doc wanted to add the BB because he was trying to lower my HR and increase blood volume at the same time. So far, I've resisted the BB. (I've taken them in the past and they make me so tired.) The florinef and Thermotabs are definately helping. i feel better so I'm exercising more, which is lowering my resting HR to the 60's. When I stand, it goes to the 90,s. Very bearable. Let me know how midrodine works for you. Julie

I recently visited the ER with a reading of 49/0. Yep, I felt awful, but could still walk and talk somewhat- with my eyes shut. Dumb, but it made me feel better:-) Julie

Jacquie- I hate to bring this up, but could you be suffering from gastroparesis? Many of us with POTS have it. It seems to be the result of an autonomic neuropathy. If it is GP, the good news is that you can treat it and feel better. And, I agree the nausea is the worst! At the very least, have your doctor call you in a script for zofran or phenergan. Here's hoping it's just a tummy bug! Julie

Princeton! My goodness, I have supreme faith in my son's abilities, but that might be a s-t-r-e-t-c-h. Darn it! Well, his last report card was pretty good, but I'm guessing he'd better get cracking to get in there. Best of luck with your degree, Angela. I know how hard attending school can be with dysautonomia. I KNOW you will finish. Big Hugs- Julie

Hey Angela- When I have more time, I'll answer your questions. What a great project. In the meantime, I'd love for my son to attend your Dad's University :-) He'd be at the only school in the US that "got" his condition! He'll be ready in 4 more years. Out of curiousity, where is it? Which University? Thanks- Julie

I'm not sure if this applies to your situation, but you may find it interesting. When my son had his TTT at Hopkins. He had all of the symptoms of pre-syncope during his entire tilt- despite the fact that his BP remained at 120/80. (It usually runs 90/60- stress made it high that day:-) He felt anxiety, lightheadedness, nausea, etc. for 35 minutes until VERY precipitiously his BP dropped to 30/? he barfed and passed out. We were told by cardiologists there that this precipitious drop in BP is very normal with NMH. The patient feels horrible. Adrenalin is buzzing through the body in anticipation of that BP drop. All pre-syncope symptoms are present even before the drop. This may not be what's happening with you. sounds like your BP's always low. But, yor body could be "sensing" an even greater drop to come.... Julie

W- I also had a thought. Might explain all of his symptoms. How about gallbladder? I just had mine out after a few horrible bouts. (In retrospect my first bout was in my 20's.) They don't often consider that in a young person. Would explain the acid, vomiting, "yellow" high liver count, and PAIN. Should all be worse after he eats. A HIDA scan would reveal a problem. A GB ultrasound for me has always been normal. Don't let them rule out GB if that's normal- push for the HIDA scan. You are all in my prayers. Keep us posted if you can. Julie

Hi Nolie- Don't be afraid to try the florinef. Just start slowly (with your doctor's approval.) I started with a half tablet for a week and then 1/2 in the Am and 1/2 in the PM, etc. Your doctor's right. There is little point to doing all of that salt and water if you are just going to urinate it out. The florinef will help you retain it, thus increasing blood volume. My son and I both use generic. It works great. About Dr. Rowe- He's a pediatrician at Hopkins. I think he always was. He specializes in "difficult cases." Kids/teens with severe, mysterious symptoms. Your child certainly applies- I hope she's much better! I think over the years, so many of the kids' symptoms have pointed to dysautonomia that he's become one of two docs in the country who specializes in treating it. (Dr. Daid Bell in Lyndonville, NY is the other.) I agree, he's wonderful. Best of luck to you. Please let us know how the florinef goes. I'm thinking about adding midrodine (promantine) and I'd love to see how the combo works for you! Julie

Wow! You've been through the wringer with florinef! I'm so sorry for all you've been through. I just wanted to share a few thoughts. My son's doc at Johns Hopkins, Dr. Peter Rowe, has all of his patients start the florined very slowly- 1/4 pill a day for a week, then a 1/2 pill a day until you work up to a therapeutic dose. If you get the "headache from ****" you've exceeded the therapeutic dose. He has his patients increase in tiny increments until there is symptom improvement or .2mg is reached. (If symptoms don't improve, florinef isn't the drug for you.) Throughout this process, he does weekly blood tests to check electrolytes. Florinef has a tendency to drain potassium. Many patients need to supplement with a slow release potassium. He also recommends weekly BP checks to make sure your BP isn't getting too high. Lots of fluid and salt is essential to get this protocol (to improve blood volume) to work. Dr. Rowe recommends Thermotabs (OTC salt/potassium tablets.) My son takes .2mg of florinef and 6 Thermotabs a day. He also drinks, water non-stop. I've just started with florinef. I started really slowly a la Dr. Rowe's protocol. For now, I'm taking 1/2 in the AM and 1/2 in the PM. I take 3 Thermotabs. I think it's helping. I've accidentally skipped florinef a few nights and I've felt markedly more tired in the AM. Maybe you just started with too much florinef too quickly (without being able to increase salt and fluid), hence all of the horrible symproms. Best of Luck- Julie