roxie

I had mine done at the request of Dr Stewart. Was told there was no abnormality but after reading these posts about how you need to freeze it & stuff I wonder if mine was handled properly? The girls at the lab didnt even know what angiotensin or plasma renin were they had to look it up online. Does anyone know where else it can be done properly beside Vandy?

Wow, it sounds like you are making good progress exercising Elfie. I am soooo slow at it but don't give up! Does exercising help you in doing other things? Like with cognitive function or fatigue?

It's important to do the right type & that can be very hard to find. I found a program used for CFS created by dr staci stevens. We talked about it a few months ago here but this is what i copied & am building up to. OK, I finally found my exercise information. Here it is summarized: **All of these are to be done lying down.** Use heart rate monitor while exercising so that you will not exceed your personal limit. First and foremost work on focused breathing. These breaths should be taken slowly and deeply. Put a box of tissues on the stomach if you are not sure you are doing it right. The box should rise on inhalation and fall on exhalation. Inhale 3 sec. exhale 3 sec. Do this before you start exercises and 10x between exercises. [breathing helps oxygenate the blood & facilitates recovery from each exercise.] Next, work on TVA (transverse abdominal) These muscles are at your body’s very core. Start by making a Haaaaa sound when you exhale (as if you were fogging up a mirror). Do this to a count of 3 then release Start off doing 1 set of 4 reps to ensure no payback ~Toe points: Point toes then bring foot back towards leg as much as comfortably possible ~Contract thigh muscles (quadriceps) for count of 3- release ~Contract gluteus muscles for count of 3- release ~Contract biceps by bringing fist up to shoulder then back down to hips ~Overhead press: start fist by the shoulder, rotate fist outward, extending arms then back down to shoulder Once you are sure there was no payback, increase reps, then when ready increase sets ex: 2x/day then 3x/day. After you have increased to 10 reps 3x/day then you can add therabands to toe points, leg extensions (leg up in air, knee bent back toward face, push out to create a diagonal), bicep curls, overhead press. These are color coded according to the amt. of resistance. Purchase at sporting goods store or online. This next bit is not for everyone. It is very expensive. It is called the Pilates Reformer. If it is possible for you to use this machine the benefit would be great to those with POTS & ME/CFIDS. This machine works perfectly with this illness because most things can be done lying down which keeps the pulse lower. You can actually “walk” while lying down if it has a rebounder on it (mini trampoline). Many exercises are done with your legs in the air which helps the pulse rate to stay down even more so! It is almost as if it were designed for this illness.

I wonder how to tell the difference too? Maybe Sally can chime in ? She has CFS first & then only recently POTS.

This is interesting bc I've been thinking about taking magnesium lately. I was looking through old newsletters recently & saw this in winter/spring 2008 I have read on several websites that it's helpful for people with POTS to take a magnesium supplement. My son is a teenager with POTS, and his doctor didn't really have an opinion on whether magnesium would be helpful or not. The reason I'm hesitating is that I am under the impression that magnesium is a blood vessel dilator, which is why it's used to treat migraines. With POTS, our goal is to constrict the blood vessels, not dilate them, right? So how can magnesium be helpful?” About magnesium: While it is true that large doses of magnesium can lower blood pressure, magnesium is still almost an essential supplement for those with POTS/Orthostatic Intolerance. Studies in the late 80’s and early 90’s, done originally on patients with MVP, but later on OI subtypes like POTS in general, have shown that the majority of these patients were deficient in magnesium. The interesting part is that most of the time, just checking the blood for magnesium shows a normal level. But Stanford University developed a test (study for research and not available commercially) where they broke open the red blood cells and measured magnesium. This showed the majority of OI/POTS patients had low intracellular magnesium that contributed to the patient’s symptoms. So magnesium is an important part of treatment, although magnesium alone is usually not enough on its own to control symptoms. You should use just over-the-counter magnesium supplements in doses prescribed on the bottle or your physician can write a prescription for a magnesium supplement. & also read about taking if from this article: http://www.hospitalsoup.com/health-conditions/postural-orthostatic-tachycardia-syndrome-things-that-helped-me-with-pots-recovery What kind are you taking? In the above article she says magnesium glycinate is best. Does it make you super sleepy? I'd love to take it before bed but just started iron bc my ferritin is super low & you aren't supposed to take the two together

SO, I've been contempltaing mostly the whole gluten free thing because I have always had a lot of stomach problems and beacuase I have read that it helps a lot of you. My problem is I keep going back and forth as to if it is neccessary and being that I don't have the strength to shop and cook for myself I need my mom. She has reservations also because it takes a lot of planning, costs more money, and affects everyone! So we can't decide and if there isn't strong evidence to it helping why bother? on the other hand if it helps, it's totally worth it. So what are your thoughts? What improvements have you seen? Thanks

Babette- I go through the same feelings as your daughter it's very hard. It feels like my life is over because so many people say things like "oh to be 25 again" & all I think is my 25 stinks*, so it just feels like life has passed by. Even though some people say I have more life ahead of me.? What's hard is that we don't know if we'll get better & it really scares to me think that I may have to live my life the way it is today when my brain knows I could do so so so much more. I am not an incompetent person but because of POTS it sure appears/feels that way. It seems like I have to separate the two a lot. Like what happens because of have POTS & what happens because of who I am as a person. Ya know?! I have to tell myself I'm not working bc of POTS but me as a person without POTS would have the ability. There is a difference if that makes sense?? I defeibtely feel like I'd be worth more if my body could do more, that is a lie, I know, but a very very hard lie to shake

* I misspelled in my earlier post. What was supposed to be my senior year was one of the SADEST* Todd- do you have a link to the youths video? I can't find it Thanks Julie, it's a real challenge. I always say & maybe it'll help Mack? If we give up then we don't have anything. Even if it's baby steps at least we're moving forward. Honestly, I know of some people who were healthy & didn't have a list of accomplishments when they graduated. I think just going to school & graduating with this illness is a super accomplishment.

The spring I was supposed to graduate was one if the safeness for me, just thinking about it is making me teary. I ended up having to be homeschooled & not graduating on time. I felt soooo left out. I still do as everyones life moves on. & he's probably going to have the same struggles. Now, pol my age are getting real jobs & getting married. It honestly doesn't get any easy. Being 25 & still living at home sometimes makes me feel like I have an "L" tattood to my forehead & I comes across as a bum. My mom tells me it's not like that BUT it sure feels like it & I really don't know how to feel about it or tell ppl when asked "what do you do?" Enough about me, I hope documentary goes well & your son knows he's not alone.?

Hey godsgal! ?I got a sportline monitor last summer & noticed the same thing happening to me. Out of the blue it's shoot up to over 200. Really really scared me. Im going to guess that once you got scared seeing your hr it made your Bp go up? As lieze said it's probably SVT. ?There's a lot of extenuating circumstances for me right now but I am going to go to a cardio to have it looked at it be safe.? Anyways, SVT is a common thing in POTS patients as seen in this article http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ It talks about getting it checked out just to make sure it is nothing more serious but most of the time it's only SVT & more of an annoyance than anything else. I also have a problem where it'll all of a sudden go blank. Like I get those lines when it's trying to read, so I think I also get irregular beats too.?

Sue- I'll have to try milk of magnesia Lieze- soda does that to me too & it feels like the bubbles keep going on in my stomach so I very rarely drink it

I'm lactose intolerant so anytime I have diary its with a lactose pill so that's probably not the cause

What brand did you get? Ive never had that happen but one time i tried an different brand..I think it was called Juzo...& I broke out it this rash. It itched & I had a ton of red bumps. Went back to normal brand & never had the problem again

Almost everyday by the time night rolls around I seem to have a of bloating and gas pain. It can be really painful. And there are times my stomach gets puffy bc if it. I have to use a warm rice bag, massage my stomach & sometimes has pills to relieve some of it. It's especially a problem on a day I've done more than normal & been upright more. Anyone else? Anyone know how to get rid of it or what causes it?

Hi maxine, I think I have read the omega 3's can cause irregular heartbeats. What kind of vitamin d are you taking? I have been followin this POTS articlehttp://www.hospitalsoup.com/health-conditions/postural-orthostatic-tachycardia-syndrome-things-that-helped-me-with-pots-recovery & she strongly believes in vitamin d. However most dr's will give you a perscription for a synthetic form that isn't easily absorbed & can make you feel sick. I just had mine tested & am deficient. So the lady in this article reccomends liquid Vitamin d3.I'm using biotics d3 emulsion forte liquid drops Havent noticed a change yet, bit it's only been a week Hope this helps

The most important thing to do is talk with your dr about your problems and reservations. I had mine taken out with just novacaine without epi. I only felt a little bit of pressure through the whole thing. But I also only had two them had to take out, however they were impacted. They had me hooked up to a bp machine and ekg to make sure nothing happened. I was nervous and very tense. I kept trying to focus on things, like reciting thigns over and over in my mind. i ended up coutning the whole time, I don't know why. After that I only was given an antbiotic and ibprofun because he didn't want to risk reactions to anything stronger. YOu know, it wasn't a fun experience but for me at least, it was the best it could have been. i know I'm not the best with going under or strong pain killes. I ended up icing my facing alot & boy did I swell! BUT i was better in a wee k or so. If you do have to go under, maybe he can give you just a baby dose. When I had an upper gi, they gave me a baby dose of local and it knocked me out. they kept me monitored there too in case I woke up or anything wacky happened for me, airing on the conservative side unless i am in clear need of something stronger works the best & I have to keep telling myself "this to shall pass" hope this helps.

Hi flower, I'm sorry your daughter is having problems. It very much sounds like POTS. There is a NZ dr listed on the physician list page. He is in Christchurch. Would it be possible for you to travel to him? That may be the best bet. I believe it is possible for a child so young to have POTS. I got it when I was 12 but there were times I saw purple in my hands & knees years before that. I never knew any different. When I was diagnosed I didn't have a tilt table I had a machine that took my bp laying, sitting, & standing so it is possible to do it without a TTT I hope you are able to get her some treatment

That's interesting! I want going to call her just try to do the exercises as listed by the woman on the other forum. She has POTS too & feels its helped her. It may be good prep/stepping stone to Dr Levine's program. It's funny you say you felt impatient bc I feel that way stopping to do the breathing. Want to get on with it but it's not like I have anything else to do

I don't know much about meinieres but you may want to talk to an eye dr. I went to one & found out that I have trouble focusing & tracking & crossing my eyes - all of these can cause dizziness & headaches. I then had to go to vision therapy to train my eyes & I still do some of the exercises. It does help & is a common problem for people. A lot of people get labeled as having learning disabilities like dyslexia when really they have problems with their eyes- like double vision- that can be corrected with therapy http://www.visiontherapy.com/

Maybe you need something to support your neck? It just doesn't back as far& it's really a small difference almost like I have a fluffy pillow behind me. I hope it gets better or I'll just have to do it gradually, hopefully it gets Better soon

Ive worn my old recliner out & have looked & looked for a new one. Finally got one that is as close to my old one as possible except it's a teensy but higher of a recline in how it lays back, maybe 10% no more than 20% but today my 2nd day with it I'm feeling dizzier & more nauseas & it's like my brain stops working. Has any one exerpienced this? Will I adjust?

Props to you for not giving up firewatcher! I know it's hard & I struggle keeping up with exercises. It is not easy & like you my heart go over ?100 just lifting my arm and stuff. I think if you only have CFS your heart isn't as reactive so thats why it may be more beneficial for them.? I have tried little bits of it- the meditative breathing in between exercises & it's helps some but not a miracle?

Has anyone heard of or tried Dr Staci Stevens exercise protocol for cfs? I've read a little bit about it on this site (scroll down to the 4 or 5th post in the first link) http://forums.aboutmecfs.org/showthread.php?5522-Postural-orthostatic-tachycardia-syndrome-P.O.T.S./page4&highlight=Pilates http://forums.aboutmecfs.org/showthread.php?3894-CFS-anaerobic-exercise-protocol-(Staci-Stevens)-Can-anyone-explain-it&highlight=Stevens It sounds really interesting & I wonder if it would help POTS patients too?

Is there somewhere online you can find the family groups of food? I've never heard of that before Weird you said bird family- I'm allergic to chicken & turkey so I just assume all other things like that evern though I have been told chicken & turkey are different! I still tested positive for both! I'd have the strangest reactions too it felt like my throat was closing & with lots of mucus but then as it loosened I'd get hiccups that would last for days. It seemed like I constantly had hiccups. Once I stopped eating poultry the hiccups went away

I go through times when I loose a lot of hair. I have very thick & a lot of hair but I'll still loose a lot of it. I just recently found out that I have low ferritin & iron saturation. If you are going to have your iron checke also ask for serum ferritin. This is the protein that stores iron in your body & can be low even if you h&h are normal. It is also a precursor to anemia- before you become classically anemic your body will deplete it's iron stores. A dr will tell you the normal range is 13-150 however many feel that anything below 50 should be treated