BEE

Okay let me clarify I am not by any means trying to discourage you just keep some of that in mind...again what works for some may not work for you vice versa...I hope that you can use this stuff and it helps you to become more functional without any side effects.

I used it they upped my dose and I dropped about 38lbs in a month and started having rebound anxiety..which wasn't anxiety to begin with. It just really messed with my system in high quantities but if it is a smaller dosage once a day or so hopefully it works and u can tolerate it!!

Bee

P.s. Are the shingles gone??

That is a great article..wil print it out for my doc...it explains some different topics..SO BIG thank you for sharing!!!

I can tell oyu to be very careful on this type of benzo..I was on xanax before diagnosed with pots..for anxiety purposes I suppose ..just remember that you can build up tolerance on it and become chemically dependent on it..BUT if it helps u to function maybe you should try it for a week. Have you ever tried Klonopin(which is a longer acting benzo and easier to come off of if need be?) I would ask about it if this will be long term for you.

Good luck..Bee

Glad it worked out for oyu for the most part...hope the UTI gets goin real SOON!!

Linda..I am so glad they have figured some of this out for you...you have had such a struggle with some of this stuff lately..GLAD your home and have found some triggers!!Big hugs sent your way!!!!

No more mouth wash POTSY pal!!!! BUt yes you know that I have had choking and esophageal spasms...ICKY for you Girly..

I also had the DOc you will see at University...I called him about symptoms a while back...and he was on call and he told me"POTS IS NOT DISABLING" needless to say I never returned I was in dire neeed of help from him and that is what he had to say...and also SOB is not a symptom of DYS... I was quite T'd off and said "IS it not DISABLING FOR YOU"???

At first I thought he was nice but since changed my opinion.

I am trying to get into Chelimsky...sad thing is I am from CLeveland area.

Bee

Or chicken-pox..I may be wrong but I tyhought they were another form of them(adult onset) I thought in the past I had heard that..maybe I am wrong.

The shingles may just be causing you to tense up your back muscles Dayna???

Anyhoo..how are you doing are they starting to go away for u?

Bee

I have had visual disturbances from the getgo The neuro I saw told me personally that they were caused by cervicogenical migraines(which I didn't believe) and in all reality after seeings ome autonomic specialists I have been told that for me that is true. I get the floaters quite a bit and notice them more in brighter light (daylight). I would check into it if oyu can but hopefully Jacquie they will go away for you (at least the headache) and they aren't anything too serious.

Take care..Bee

Jacquie I wanted to add do you have allergies..I am a walking histamine...they are telling me it is due to the allergies(just found out I am allergic to lots). Also there is Mast cell disorder????

Definitely could be nerve pain from the shingles..

Hey Jacquie Sorry to hear that your still weak and fatigued...it stinks but you know I go through phases of the fatigue and weakness(feels like my arms and legs are rubber and all over just weak.). I wish I had some advice to deal with this..just try and take it easy. I hope it goes away soon for you.

Glad there is no tumor...

Hugs..Bee

And this happened when???????????

I am so sorry Diz...I hope things are ok.

Bee

Oh no Dayna...I hope it isn't shingles but that would explain the pain..let us know

What a bunch or horse doo doo Ernie...You don't deserve that!! He made no sense...

Hope your doing okay...Bee

Take care girlie..and get some well needed rest ..I hope u feel better in the A.M.

I can only say that for ME I saw a chiro when I was having the pain in arms and back and such and especially the neck...after seeing two reputable docs on Dys. I was told that I should not return that it can make things worse. Now I must say that there are always conflicting opinions in this..and massage therapy I had cranial-sacral done for muscles spasms and I felt good for a few hours but then in two or three days felt I couldn't walk..remember this is just my experience. But if oyu have something nerve related or muscular it could make things alot worse for you Dayna.

I was told it was the coat-hangar effect from POTS and also neuropathy..(hands,feet,arms,etc)...it can be different areas at different times. But usually if my shoulder,arm,hand hurt it is only on left side.

How are your potassium levels and such are you keeping things balanced .I know you have gastroparesis but I know this stuff is alot worse when my electrolytes are out of whack.

Heat and ice alternating might help??(moist heat if muscular)

Bee

Dayna...Hang in there girl ...It happens to the best of us...it is all part of this crazy stuff.

You are not delusional these are REAL things that happen to us..one minute it is one thing the next it is another.

Watch out for chiropractors...not always a good thing for patients with DYS.

Bee

I had severe problems with swallowing with the onset of this disorder....I was tested for Gullian-Barre and MG. Negative on both. But at certain times throughout the month this gets worse for me..no pattern just happens. I also had esophageal studies up the ying-yang..nothing. I know there are lots of nerves in the throat and esophagus and nose..keep that in mind if the testing turns to be negative. I hope that it isn't anything serious for you..this symptom is really bothersome and scary for me at times.

Bee

I get this it just comes on all of a sudden and wipes me out for an hour or so I feel like my body has no energy and then a little later I am fine..or vise versa. Sometimes I find it more if I have eatin a bigger meal than usual but not all the time.

I live in Ohio..just south of Cleveland about 20 min or so.

Another trick is to cross your legs and flex your thighs while standing..moving around helps alot especially if you have to wait in any kind of line..or sometimes I will crouch down. Make sue you drink lots of fluids before,during and after outings.

My cardiologist is also familiar with general care so he addresses all of it.

Keep walking,or stand and kneel cross legs over each other and flex thigh muscles.and if worse comes to worse I will lay down wherever I am and put feet above head...remember guys stores that usually make us tremendously symptomatic have a patio section(walmart) or a beanbag/chair section. I just take advantage of those.

Bee

Right before I was diagnosed with POTS my neuro kept telling me the dizziness and weakness and pain I felt in my neck and head was from migraines..cervicalgenical migraines. Sometimes I would get the zigzags and lights without having a ture headache(no Pain) so migraines DO come in many forms.

Now if I could only figure out how to ease them without taking anything with stimulants in it... .

Ice and heat sometimes work but not all the time.

Good luck with this..Bee