brethor9

that's interesting caterpilly....I also probably have CFS according to the rheumy.....we sound very much alike my symptoms rarely correlate to anything they are all over the map one minute to the next ..... I really think all of this stuff is just part of a larger picture nobody has stumbled on yet.......

Thanks Pam and I would be so lost without all of the wonderful people on this forum!...thank God for that

Thanks caterpilly for clearing some of that up for me......I agree with you for me it is far more than cardiovascular symptoms. In fact I asked my specialist once why even when the OI isnt so bad why I still feel so sick? He said that's POTS and the autonomic dysfunction which I guess for me are far worse than the OI .... complicated......

Bren

I think now I have gotten to the point where I realize I am probably stuck with this for the rest of my life and that somehow I am just going to have to cope (I owe it to my son) my specialists have gone from telling me 1-2 yrs for improvement to benign chronic long term illness and the list of secondary issues keep getting longer. I guess I can handle having to live with this new life but what my personality doesnt allow is the not knowing why? I have to know the cause...its how my brain works.....I am a huge believer in cause and effect. I just wish more dr's cared about the why.......if their lives were drastically altered over a couple of years for no reason and to the point that they couldnt hold a job, friends or anything the slight bit fun or stressful, I bet they would want answers ;(.....sorry to ramble...bad day lol!

Bren

nice to see him back! wonder what his secret is? so he just had orthostatic intolerance (is it right that they say its just a cardiovascular illness)? he did not have any autonomic dysfunction? see this is where I get so confused about this syndrome. I have been diagnosed with all 3....orthostatic intolerance, POTS and autonomic dysfunction....... subcategories of dysautonomia....... or so explained to me by my specialist

Bren

The heat doesn't help thats for sure ......lol yeah! we are high maintenance......my specialist now thinks that peripheral neuropathy may actually be behind my autonomic dysfunction so if that's the case the infusions won't make much of a difference I think. That's why I think so many of us don't see much improvement with the saline...there are so many different reasons for why we are affected in the first place.....I get so sick of the band aids I would really love to find the cause so it can cure the effects I notice you have SFN do they figure that is what's causing your POTS?

Bren

Lemons!

That is totally what mine is like! Carotid spasms is exactly what it feels like and it doesnt coincide with my pulse.....it can actually cause tachycardia for me. I plan to talk to my specialist about it as its starting to happen more often and it freaks me out...

Bren

Hi Naomi!

I have actually stopped my saline infusions as I was having great difficulty even getting them started (no vein access, veins collapsing, fluid overload, possible porta cath insertion (decided against that)) and they made me feel worse also with lower BP. My nurse said she thought it was because the saline was so cold and my core was dropping because of it. Are they giving you refrigerated saline or room temperature? It may make a difference for you......

Bren

I hear you on that one Dana! Every time I try the littlest bit of exercise or exertion my system shuts me down immediately My Drs want me to do at least 10 mins a day so I figure if I can do a couple trips up and down the stairs I am doing good....I was diagnosed with high catecholamines baseline and standing.... I don't think exercise is the answer for everyone....I was incredibly fit before POTS- 6 pack abs and all! 1.5 miles a day now I can barely do my laundry....and pushing through isn't an option....this illness makes you pay if you play ;(

Bren

me too one of the worst flares in a while....come on fall

Bren

wow....need to pass this on to my specialist who is now adding saline infusion as part of his regular treatment protocol.......

yes! I totally get that...in fact I go through these episode where I get severe pain that pulses through my carotids especially the right side....its really painful and scary and makes me feel like I am stroking out....I have noticed though when these episodes happen my BP is swinging really erratically and I am having bursts of adrenaline...but like you I also feel faint with the slightest pressure on them.....very strange...

Bren

Lexcyn

I also have episodes like this also and I agree they are very scary in fact today when my nurse came....sitting my BP was 152 and as soon as I stood it went down to 130 pretty big jump.....I get chest pain also with these swings....if it gets really bad I take a small dose of beta blocker.....all just part of having POTS I guess

yep me too! I always say it feels like I am trying to take air through a straw......that my lungs are inflamed

Hi Puppy Love

When I first started Florinef that was my concern too but my specialist said that at such a small dose(1-2mg) we should only get the beneficial effects and not the side effects experienced at higher doses of steroids.......I am not a teenager but do have hormone imbalance issues and haven't noticed any issues with taking the florinef and it affecting my hormones...hope that helps!

Bren

Yep that's what I was diagnosed with having too high of levels of norepinephrine......arrgh!

I sleep at night maybe 2 hrs at a time as I am constantly waking up due to joint pain, neuropathy, head pressure, palpitations, etc...... I cannot nap.....I am always exhausted but it is not sleepy tiredness more like bone tired weariness....probably similar to CFS....before POTS I used to love to sleep..it was my favourite past time

Bren

I had blood gases done many times also and they always came back normal.......

Katybug....that is exactly the type of pain I have been trying to explain to my specialist like being sunburned or bruised..... he is now also referring me to have testing done for peripheral neuropathy...only I am opposite to you with the sweating thing....I hardly sweat at all anymore....weird and brutal in this heat he also just recently mentioned maybe trying IVIG to treat it? another mystery for us....... hugs

Bren

You aren't the only one Naomi I was doing ok for a little bit but then had to come off the beta blocker because it was making my blood pooling so much worse and I gained 25 lbs in 1 month...yikes....I also cannot start my saline IV infusions because they are unable to tap any veins anywhere (they are talking a porta cath and I dont want to go there).......so now I am back to being up and down again with the heart rate control.....now I am actually having bouts of bradycardia which I never experienced before the beta blocker....even though I have stopped it its still happening.....thats scary too! Sometimes I am tempted just to stop all the meds as I wonder in the long run how much of their own damage they are doing? So sorry you are still struggling too big hugs!!

Bren

actually my internist has just mentioned this treatment to me as I am not responding to meds very well and now possibly have peripheral neuropathy......apparently he said they are now using as off-label treatment in alot of illnesses including neuropathy, CFS, etc....he believes I may have an underlying low grade chronic infection and that adding the immunoglobulin antibodies may help my immune system.....Arizona Girl; I would also love to hear any info and input you have on this treatment

Bren

WOW Dana! so very lovely...what a talent you have....I agree you are so much better then most of those idol/voice contestants keep singing and keep getting you're videos out there...you never know who may be watching them...word of mouth can be an amazing tool!

Bren

I agree you should try the florinef first and get used to it before adding the beta blocker.....that way if you have side effects you will know what medication is causing them....good luck! Florinef has been very helpful for me

Bren

for me all the medications I take for POTS are a just a band aid solution but until they can actually figure out what's causing this illness and cure it....I guess that's all there is...... my specialist said all we can treat are the symptoms and even that is a shot in the dark most of the time

for the ones having the amnesia effect it could simply be too high of a dose....ativan/ lorazepam is quite a strong drug because it has a short half life.....like any other medication with us you should start out small....a quarter tablet may be all you need.....thats how it works for me.....some days depending on my system I take 1/4 some days 1mg.......with us less is always more IMO....

Bren