brethor9

I have used lorazepam for well over 2 years....1mg at bedtime no increase in dosage.....it has helped my symptoms ie nausea,headaches, sleep, stomach distress, allergic reactions....but I have suspected mast cell issues and they can help with that (that's another story .....I was also worried about tolerance and addiction but my dr said if it helps that's what is important. There is a difference between being addicted and dependant.....addiction is more used for recreation high, drug seeking, etc...many people are dependant on drugs to help them function ie; insulin, beta blockers; epilepsy drugs; anti-depressants which can also be horrible to get off of and "addictive" ....not pretty when you watch someone who has been on them for ten years try to get off.....anyway that's my opinion.... I say whatever helps you to feel even a little bit better is worth it

I feel the same way in the heat ...... I rarely get outside...makes me way too symptomatic.... I always thought it may be due to being over vasodilated which causes worse pooling which then causes more adrenaline compensation (tachy) , dehydration, and unable to properly regulate temp changes which the autonomic system has control over. I live in Canada and Fall is finally upon us and I have never been happier to see cooler temps....although I don't do great in the extreme cold either never a happy medium is there?

me too! I get dizzy just from drinking a glass of water lol.......I have always assumed it is a vagal response

so happy for you Peace that must take some stress off for you.......oddly enough I was also granted disability on the first try... I sent over 65 pages of consult notes, tests etc lol......they probably thought oh heck I'm not reading all of this! Just give it to her

Issie I totally agree with you about the anti histamines ....I reacted horribly to every single one....I actually asked my doctor if you could have a reaction to them? I finally managed to tolerate childrens claritin but had to titrate up very slowly. I think you are right that they are only another band aid really....you have to start at the mast cells themselves rather than just managing the symptoms. Even on the H1 and H2 I am still struggling which tells me that histamine release can't be my only problem. Is the quercertin just a supplement? I would try the nasal crom but it is so expensive and I have no drug coverage

Libby....big hug! I am so sorry you had a bad episode.....my mom was exactly the same until I almost fainted in a store one day.....and she got to see my very purple and mottled legs....its sad that we wear our illness on the inside and that people don't take it seriously

Spinner....My suspected mast cell symptoms are constant nausea, major gastro issues, dermographatism, several forms of urticaria, flushing, itching, shortness of breath, tachycardia, labile blood pressure, joint pain and swelling, headaches....etc, etc...... I could be mistaken but I don't think patients with other forms of POTS have the flushing issues or dermographatism, urticaria etc. In regards to the lorazepam oddly enough I have never had to increase the dose and in fact usually take less but my symptoms definately flare up bad if I dont take it....for whatever reason my system needs it right now. I have to be off all of my H1, H2 and other meds for immune testing on Wednesday and my system is already in serious revolt

Dizzy....I hear you on the toxins; I am gluten, soy, dairy, nut, low histamine free but I still fight with symptoms....

Nothing to be embarrassed about pumpkin its an honest situation that I am sure a lot of us experience; myself included. I think its a cause of adrenaline and oxygen control (heavy, fast breathing probably isn't best for us Potsies!) Like Katybug suggested try different positions that maybe don't stress your body as much and you get optimum blood flow...... I use to almost pass out....poor hubby thought he was going to kill me what helped me personally was taking a small dose of lorazepam or antihistamine beforehand.....or if you are taking a beta blocker you can always try a very small dose of that.....

I have taken small dose lorazepam for over 2.5 years....it is a benzo like klonopin and out of all of my meds it is the only one that has helped put any kind of dent in my symptoms....I have suspected mast cell issues and it actually helps alot with those.....it doesn't do anything for my adrenaline issues oddly enough. There are quite a few mast cell articles that recommend using any benzodiazipine as part of mast cell treatment (they all bind the mast cell receptors). Dr Afrin (a well known mast cell specialist has talked about it in his presentations.) Klonopin I couldn't take...found it way too strong and sedating and worsened my lighthededness....interesting how each benzo is different depending on the individual. I am not concerned about addiction as it keeps me from being bedridden.....I think that is more important

yes I have these issues too especially the sensation you describe bananas...the push pull sensation.....i also get the feeling like my feet are being sucked through the floor......it drives me crazy...and makes me feel crazy glad to know I am not the only one.....

I never experienced this until I started taking a beta blocker......I only take a very small dose when my tachy is really bad...but I find for days even a week after just 1 dose I start having episodes of brady and skipped beats. This is why at times; I think is it really smart to be messing with the system more or will I just eventually make it worse by taking all these meds? The brady feels almost as bad if not worse than the tachy

Bren

mytwogirlsrox;I agree with you and one of my specialis'st said basically any rapid rise in heart rate from sitting to standing over like 10 bpm isnt really normal.... I mean makes sense right? all you did was stand up and your heart jumps like 20- 30 beats??? definately not normal......

I found this definition in a article I was reading recently;

"The hallmark symptom of POTS is an increase in heart rate from the supine to upright position of more than 30 beats per minute or to a heart rate greater than 120 beats per minute within 12 minutes of head-up tilt.

so it isn't really based on immediate results....and another misconception many have including doctors is that BP isn't always an indication for diagnosis....you can have high or low blood pressure with POTS.

Bren

now that's interesting! I have wondered about cortisol as I was reading an article recently that said florinef is only one compound different than cortisol......I have had no symptom relief with hydration either....but have noticed the florinef seems to help with symptoms other than sodium retention and definately has an effect on my hormones...thanks for the article I will be forwarding it to my specialist

Bren

thanks Alex makes perfect sense

Bren

good luck with the florinef, Peace I hope it gives you some symptom relief......

Bren

Alex

curious? is that increase only relatable to surgery or any type of overly stressful condition? I am just thinking that there are times when I am having more stress than others (ie illness, moving, emergencies?) and wonder if increasing florinef would help offset the increase in symptoms during these times?

Bren

I have always had very visible veins and translucent skin.....I have resorted to using a sunless tanner pretty much all year round because it looks so unsightly. It has gotten alot more noticeable with the POTS

Bren

Alex, I am actually the same as you when it comes to betas....no matter how small the dose they just make me feel 100 times worse I suspect this could be because of underlying mast cell issues either way I just don't tolerate them well

Bren

beta blockers cause mast cells to degranulate....which in turn can cause an allergic reaction....they are contraindicated in people who have allergies and asthma too

yeah I have a love hate relationship with this drug......I hate the side effects but when I try to go off of it (which is incredibly difficult) about a week later I crash...so for now I have to keep taking it but its just kind of meh for me. Still looking for something else that might have some better results with all the other dysauto symptoms.

Bren

for me I have always had this problem...even as a young child..never done well with quick temp changes......I think it is more of an allergy thing but the dysauto probably makes the whole system much more sensitive.....I think its also why I am having problems with the whole mast cell thing....but was it the chicken before the egg is what I am still trying to figure out.....

Hi Peace

I also have been diagnosed with hot and cold urticaria....and I do get the rashing on my chest, arms and legs....especially when exposed to heat and then suddenly cold..... antihistamines have helped me a little with this.....give one a shot hopefully it will give you some relief

hey Mcblonde I am having issues with Florinef lately too......I went off for about a week to have some tests...started to downslide and now I am trying to get back on but having major tachy, jitters, mood swings....higher BP......arrggh....its one of those drugs that seems to turn on you in a minute!...and now I dont know what's causing what......

Issie....also the point you make about MCAS and edema makes so much sense.....it may explain why I am constantly low in blood volume yet retaining fluids in all the wrong places.... I am the same way I can't constrict too much or dilate too much or I get sick.