brethor9

future I have been on it for well over 2 years without ever going over my 1mg daily dose unless I have an adrenergic storm or bad MCAS episode. Some days I even only take a half dose...I have never had any issues....I look at it this way.....it is the only medication out of every single anti-depressant, POTS medications that ever makes a difference.....and for me that makes all the difference in the world....I got past the worry of addiction along time ago....we are all addicted to something...the difference is this med helps me keep from being bedridden most of the time. Its not a cure but it helps! PS I know several MCAS patients who have been prescribed benzos as part of their treatment and have seen improvement along with the H1/H2 protocol....good luck with Dr Afrin!

odd how we are all different....my auto dr is fine with me taking ativan as it helps my POTS symptoms and the MCAS symptoms and just recently the neuropathy I have been experiencing....I cant blame my POTS on ativan as I was sick many years prior to starting it......and when I have an adrenergic storm (shudder) zantac and benadryl and ativan are the only things that can help

Hi Hip! I was actually put on ativan before I found out I had POTS and dysautonomia....of course because my ignorant dr thought it was anxiety like most people here lol.....the ativan helps take the edge off a little bit....it doesnt lower my BP much...lowers my HR a little....helps with my migraines, nausea, sleep, GI distress, leg cramping, flushing, joint pain, etc.......the reason it helps with so many of my symptoms that it isnt really indicated for is because I have suspected MCAS and when reading Dr Afrins material found it is also a mast cell binder (keeps them from degranulating) so for me it is a must medication!! Of course everyone reacts differently to benzos (clonazepam messes me up lol) and they all have different half lifes....ativan is short acting....while valium and clonazepam have double the half life...thats the only downfall to me with ativan IMO....good luck!!

I too also have degenerative disk disease and bulging in my lumber spine....I have definately noticed that if I throw this area out it can set off a POTS flare....I have not been able to get any of my specialists to pay attention to it ..... there is definately a link I think

I actually have the same reaction as Dani.....oddly enough I think my system has been so used to the high HR and massive adrenaline that when I lower it all too much I basically flatline....I dont think my system knows how to react without it..... all of the BB's have been horrible for me and especially made the pooling worse....antihistamines have been the most helpful but they have their own side effects on the system....with POTS you can never win it seems.........

brain fog/ drunk feeling....joint pain and burning.....GI upset...fatigue......general feeling of being sucked into the ground every time I stand (the oddest sensation)...it all ***** basically and keeps me from ever really being productive Bren

yep I totally agree with you chaos I can feel the change come over my system but it just isnt something I can control....my specialist said the autonomic system is also in charge of fight or flight......some are fighters (me definately lol!) and some are flight (crying jags etc) before POTS I was such a more passive person...not anymore I spend alot of time apologizing on my bad days.... oh well.... Bren

me too Jen! my specialists said it is because I have way too many catecholamines and my receptors don't work properly to get it out of my system....so even on a good day I still have too much....god help anyone when I am having a bad day I have just explained to everyone that I have an adrenaline issue and dont take it personally....I really cant control it..... Bren

bone pain/joint pain is one of my biggest problems also right now.....I totally sympathize my legs ache so bad I want to rip them off! I have had all of vitamin levels checked and they are normal....my specialist thinks its MCAS and neuropathy related.....I find if it is really bad I take some benadryl and 1/2 tablet of ativan to help. Bren

my doctor listed chronic exhaustion/ fatigue, chronic pain, inability to maintain homeostasis longer than 15-30 mins at a time, presyncope, chronic migraine/head pressure....he made it really very black and white that I could not work...I agree with Brye you are a liability to any employer even if you have a small chance of fainting or passing out...especially if it can happen at any time ;( I received mine the first time.....but I also sent 65 pages of consult notes, tests results, pictures, etc Bren

all I can say is I am right there with all of you......sending strength, courage and hugs to you all and hoping we all pull out of this downward spiral soon Bren

pneumonia was one of the most dangerous and infectious diseases also in the 1930's ....although I dont know if it would lead to gangrene....also diabetes mellitis and septicemia (blood infection) was common and I believe those illnesses could lead to gangrene.....the 1930's is when they just discovered sulfa antibiotics...bloodletting as treatment apparently was common also......not sure if any of that is helpful Bren

I am better with certain symptoms ie lightheadeness, head pressure etc but I am progressing with new symptoms such as peripheral neuropathy, chronic swelling and joint pain, loss of smell, migraines and the list goes on so at this point I would say NO Bren

yay peace!!! I am so happy it went great for you!! Its such a breakthrough for us when we finally get that Dr who gets how horrible this illness is.....and very nice that she did not make you suffer with the TTT......the blood pooling is kinda the clincher.....normal people dont have their legs mottle and turn blue ha, ha......big hugs!!! Bren

I have taken 1mg of ativan before bedtime for about 3 years.....it definately helps with my night time tachy episodes....clonazepam just made me really dizzy and yucky....shows every benzo is different.....I have tried every other med and its the only thing that helps. Although I did find out recently it is listed on Dr Afrins medication protocol for MCAS so I think thats why I get so much benefit from it its a mast cell binder...... good luck bren

stroke like symptoms were my first presentation with POTS.....it was terrifying! I would keep getting told it was anxiety or migraine and being sent home by the ER when I was walking into walls. I started to deteriorate so badly the dr I worked with was worried I was showing signs of MS.....did lumber tap etc...CT's, MRI's to rule everything out but that was a year after onset.......(I always kept thinking I could be dead before they take it seriously) when I started florinef the symptoms started to get better but I still get bad flares. Like every one else here I would never be able to tell the difference if I had something life threatening scary Bren

Hey Peace On my first TTT it was done at an autonomic clinic with very knowledgeable techs and doctors....it technically was a dry run to see what my body was up to and it lasted about 30 mins......I did not pass out but felt horrible and my legs had started pooling etc. They immediately scheduled me to come back for a second shorter TTT to test for catecholamines and to administer the meds. I was also a little apprehensive about the meds but felt comfortable that I wouldnt be in any danger....I went through the dangers with the doctor and techs and worst case scenarios. When they administered the isoproterenol my reaction was quick and severe.....the feeling of your worst scare multiplied by a thousand....pure adrenaline! it was scary because I wasnt prepared for the way it made me react but my wonderful nurses were right there with me and they quickly administer a drug to bring you down and counteract the effects.....my doctor apologized for putting me through it but it was a necessity to determine what my receptors and catecholamines were doing. In the end I was glad I went through it all because I think the more data they can get the better they can treat you...but that just my opinion good luck with whatever you choose to do Bren

oh boy Rama lol! I think I would rather stay dehydrated!

yeah good point on the MCAD thing Katy! I never even thought of that....may explain why my upper arm was so beet red and swollen...I do have a lot of skin urticaria and cold urticaria, etc maybe that is part of it. Its just another red flag in a long list of abnormalities that I believe one day will all add up to something and I may finally get some answers....hoping anyway

Hi I had a horrible migraine for 1 1/2 days after my tilt and massive leg cramps....not sure why....but you aren't alone...hug Bren

Hi Naomi yep they have tried my hands and arms my veins are so tiny and collapse so easily they just cant get a viable one to use so they thought subcutaneous would work because it goes into the fat layer but there should be no pain and no swelling.....hopefully my specialist will have some ideas I am really starting to wonder about the whole EDS thing.....

Subcutaneous infusions[, (a.k.a hypodermoclysis and sometimes referred to as simply clysis) were suggested to us by my Endocrinologist as a long term home saline solution. They are infusions given slowly just under the skin in the fatty layer above the muscle. ]A butterfly needle is inserted under the skin (often in the squishy part of your stomach skin) and fluid is very slowly dripped in at a rate of about 500ml/12 hrs. It is absorbed away into the blood stream and supposed to hydrate your tissues better rather than a normal Iv that goes into the vein. The idea was that this way the fluids would get to where they needed to and not be so quickly excreted out. that is how it is supposed to work anyway and its not supposed to be burning and painful long term. The nurse was concerned because the fluid just kept sitting there and the pain was very bad.....its a mystery to me

Hi All Haven' really been posting much lately as things have been hectic and I have been going through a bad flare. As I mentioned in a previous post my specialist has started me on biweekly IV saline infusions which are turning out to be very complicated indeed. So the first time it took 3 nurses to do a veinous access because I literally have no veins in my hands and when they do find them they collapse and roll...useless. So my fabulous nurse whom I love came up with the idea of subcutaneous infusion.....they put a lancet just underneath your skin and over about 7 hours it infuses saline into your cells. I was sooo excited about this method as the pump is completely portable and less invasive. Well.......went to start it today...the butterfly lancet went in fine but as soon as she started flushing saline in my arm started to burn and become very painful that was only with 4cc's of fluid....but the worst part was that in the span of a minute I had a huge lump on my arm from fluid build up .....it was not dispersing into my cells just sitting there. The nurse said this is highly abnormal and thank god they didnt put it through my stomach. I asked her if she had every seen this before and she said only in cases of fibrosis? or if something is wrong on a cellular level? So to all you smarties out there any theory as to what the heck this is all about? and why my muscles will not let the fluid in? I am looking at all you EDS'rs also...is this a sign? she also keeps mentioning how my skin is weird too baby smooth...etc I am stumped....now they have to go and get permission to see if they can infuse straight into an artery...I would love to say no but my specialist refuses because my sodium and blood volume is so chronically low Thanks for any input! Bren

Mine was gradual at the start and then sudden crash over the span of almost 5 years now. It does wax and wane but I would never say I am in remission because I never feel normal compared to what I had before this illness.....it is progressing as I am no longer just pooling in my legs but now in my arms and stomach, have mast cell issues and just recently was told it looks like I now have periphereal neuropathy at play....... like you Naomi I always feel sick in some way Bren

Quote ....in fact when they gave me only a tiny dose of isopropolol? (similar to adrenaline) I had one of the strongest reactions he had seen (it was nasty lol!) "beta 1 sensitivity is very common and often confused with hyper presentations because the subjective feelinsg are the same. " ........just to be clear this was not the only finding that led to my specialist classifying me as Hyper Pots.....it was based on many lab findings, autonomic tests and clinical presentation, consults with Vandy...etc....after my last follow up he said I am definately in the 10% population of patients who has the Hyper form and that my treatment would be more difficult and indefinate ....on top of that I am 1 out of 10 of the most progressive and complicated cases he has seen. Hyper patients do exist...not everyone is just straight POTS Bren