Annaliese

The more i read the more i think that this gradual reduction in BP over a year might be due to adrenal insufficiency ( because ive had huge anxiety). Hmm. Thoughts anyone?

Todd, you brought up the Q re regional versus overall hypervolemia. I had wondered this too. After watching that seminar series i mentioned above, it appears (at least to me) that the body prioritises blood flow to vital organs. So if you had neuropathy and your overall blood volume was normal for someone your size, standing would pool blood in your legs decreasing bp to vital organs. These organs sense a problem and activate the renin angiotensin system. So, my interpretation was, it's regional. What do others think?

I found this free webinar series on the renin-angiotensin system very useful in explaining how blood volume and BP are maintained by the body. http://drnajeeblectures.com I watched it all and there was no mention of blood pressure or volume sensors in the legs.....

I am aware that you can get flushing due to mast cell activation. Are there other types of flushing too? I am getting flushing consistently when I am lying down and also when i sit with my legs down (ie normal sitting). These are situations where i have the lowest BP. The flush doesnt feel hot, actually it's difficult to describe what it feels like. I have been scanned for tumors btw. Does anybody else have flushing whiich correlates with low bp (the low bp happens first, then the flushing)?

Are fibroids related too?

Hi Steven I read your story and i can completely relate. My dys started suddenly after c section and oh my word was i sick. My sister actually told me not to talk in appointments because i sounded a bit "knocked off" and she didnt want the drs to assume i was a psych patient! One of my biggest prolems apart from a 150 hr and high bp was whiteknuckle anxiety, i behaved like someone straight out of that trainspotting movie. And there's only so much you can take of high adrenalin levels before you just cry hysterically like as you say, someone has died. I did the hysterical crying thing for months and my partner would have to dress me and haul me up to the car and take me to a public place so that i would calm down. Not happy days. Things started to improve after my dr wanted to put me on some dodgy drug that causes facial twitching and admit me to a psych ward. It gave me a real kick in the arse. I thought, who are these people trying to put a neuro patient (i had already been diagnosed as having dys) into a psych ward. I got REALLY angry and thought if i dont start working out what is wrong with me nobody will. So i decided right then i would read EVERYTHING i could get my hands on wrt dys. I also ditched the crap drs and found some new ones. Within a couple of months i had discovered that my beta blocker really needed to be taken in the afternoon also. With this small alteration in meds my crying HALVED! I felt so much better. Anyway, i could go on but my points are 1) read alot 2) join as many help groups as possible 3) dont lose hope because a better treatment halving your symptoms might be just around the corner 3) get rid of crap drs and keep seeing new ones until you find one that helps 4) in addition to neuros, also see haemotoloists, immunoligists and physicians 5) get a really good GP as they quite often make the most diff in terms of locatin good specialists 6) remember you are not alone. Keep us posted on how you go.

Cgnursegirl. Here is a bit about mast cell disorders http://www.patient.co.uk/doctor/Mastocytosis-and-Mast-Cell-Disorders.htm

Anna, thanks for that info about IgA difficiency. Very interesting. My mother told me i always used to get a lot sicker than my 3 sisters when i was young-hmmmm.

Sally, sorry to hear that your hyst caused your dysautonomia. How are you doing now?

Ramakentish. Thanks so much for that info. No im not in Melbourne sadly. Im in Brisvegas. Have been thinking about flying to melbourne or sydney to see someone who has a high dys patient load and to get tilt tested. We have tilt testing here but they dont do blood work. Am seeing Terrence Frost here for haematology and he so far seems very good. How long did you go before you gave up on seeing specialists? I'm almost looking forward to the time when ive knocked on every door.

It's great for us that they are uncovering more conditions which are autoimmune in the sense that perhaps it will result in more research.

For me, the frustrating thing about articles is that they are word limited by the publishers. In some journals, the authors are forced to be ultra economical and sometimes key pieces of info are left out. Also, performance of academics these days (at least in oz) is measured increasingly by the volume of papers published and on average, this has lead to a reduction in quality. Ramakentish, on another topic, i just saw a very good haematologist yesterday. I explained about NO and angiotensin and he asked me what tests i wanted done.After taking florinef for a week and not having to drink every five mins i think that one of the blood volume or pressure regulatory systems has gone awry. Have you got any suggestions for what tests he should run because i have no idea? He is onto the mast cell testing as he has a special interest in that area. In the end 8 tubes of blood were taken but im going to have to ring up to find out which tests these corresponded to because at the time i was too ill to care. Any blood testing info you could give me would be much appreciated. I would usually find out these things myself but with 2 small kids im struggling.

Ive heard of this gene silencing business but dont know much about it yet. Am lusting over some medical text books but boy are they expensive. Im beginning to think i should have payed attention in biochem and physiol.

Yep, i think we have overactive sympathetic nervous systems. Too much stress, a virus, a surgery, a pregnancy and boom, sympathetic overdrive. All of the troops are called in at the ready in case theres an invasion. What's that, gluten? Bomb it! A bit of pollen, nuc it! No wonder mcad issues pop up out of nowhere. I think the secret is in calming the symp nervous system.

Hi cgnurse girl. Thanks for your post. It'sinteresting that bowel surgery caused the switch for you. Have you ever been tested for mcad issues? Was this the first time you'd hd surgery? Re your autoimmune theory. I didnt have pots before i got pregnant. The pregnancy triggered it. I do think there is an autoimmne response going on though that is perhps gradually regressing.

Momtoguiliana, thanks for replying : ) I have been wondering how youve been going. Did you ever get crazy anxiety which correlated with the the severity of your high BP? My main problem at the moment is anxiety. A close second is that i cant tolerate having my legs down even when sitting. My blood pressure can be ok ish but my pulse pressure is narrow (about 20). After about 5 mins of sitting i have a flush and then i get bowel cramps and feel like throwing up. Did this ever happen to you? I am currently getting tested for mcad as i cant eat histamine heavy foods. I could eat anything i wanted to before pregnancy (except curry) so its very mysterious. Because of low BP, I too now cant take beta blockers. This is a pain because they blocked some of my anxiety. Plus, now my heart rate is 130 which isnt that pleasant. Ive started a trial of florinef which makes my feel less light headed but it makes my legs ache. One other question, did you have tingling on your lower legs? To me it doesn sound like progressive neuroparhy because it didnt start at my toes and work up, it all of a sudddn was all the way up to my knees. Curiouser and curiouser. Very pleased to see that overall you are doing well. Oh, and when you stopped the beta blockerd, did you have to wait out a high hr period?

I am just wondering if anyone else has had a slowly reducing standing BP. I developed sudden onset high standing BP with very bad anxiety after pregnancy. Over a year my standing BP has gradually reduced (along with anxiety). I was pleased with this until my orthostatic hypertension turned into hypotension. For the whole year my pulse pressure has been about 20 and I am no more functional than i was a year ago.

Tremendous! My compulsive laziness might one day be treated!

Wahooooo! I could kiss you for posting that link. Thanks Ramakentish! : ) Let's hope it takes less than 10 years before it translates to a drug treatment.

Btw, im glad you said that mcad could be the result of abnormal symp activity or NO levels. That gives me some hope (i dont know why as im not sure which condition is worse).

I see you have mentioned the potential for a"myriad of potential sights of immune mediated pathologies". I have been wondering about this, particularly over the last few days as i have been trialing florinef. I have noticed my excessive thirst and dry mouth have disappeared perhaps indicating that without drug treatment, i have a problem with maintaining adequate blood volume. The low blood volume is registered, i feel thirsty, but somehow the water is not retained. I wonder what's going on here. Re MCAD, i dont trust that the studies reporting normal histamine levels in most patients means that there isnt an intermittent histamine problem in some people. Ive read many of the mcad posts and some people have typical mcad responses, their drs think they have mcad but its not been picked up through any test. Re mayo explanations. I think its not just mayo. Many of the papers explaining subcategories seem contradictory to me(but then again i could be misunderstanding something). Most frustrating is that pregnancy induced dys seems to largely be ignored in the literarure although everyone seems to use the same one liner quote effectively saying people who develop dys in pregnancy have a poor prognosis. Hmmm.

Ramakentish. Thanks for your reply to my post. I find it very interesting reading your responses. Re your above post: I agree that neuropathy cant cause high standing blood pressure but mast cell activation disorder (which is an autoimmune response) can. Have you seen this article? http://www.ncbi.nlm.nih.gov/m/pubmed/15710782/ In my dysautonomia case i got pregnant, my standing blood pressure and hr became high and at the same time i had symptoms of excessive sympathetic activity (huge anxiety, light/sound sensitivity) but also flushing, polyurea and diarrhea, food intolerances. The diarhea and polyurea dont fit in with excessive symp activity so i suspected mcad but didnt understand how it could cause high BP. Then i found the above article which explains how tht can occur. I also have fibromyalgia which is suspected to have autoimmune origins. So, in my case i am 99 percent sure i have autoimmune disease but that this has presented counterintuitively as high standing BP. Interestingly, my sympathetic symptoms have calmed somewhat over the last year and i now have low BP. I think the low bp might be caused by neuropathy as i have tingling on my lower legs. Sustained mcad, in my opinion, has caused this neuropathy. Id be interested to hear what you think about this article. BTW it is my suspicion that many people with dys DO have autoimmune disease as they seem to have associated medical problems which are known autoimmune diseases. One thing im trying to get a consensus for is does a negative autoimmune test mean that there are no autoimmune diseases taking place? My understanding is that a negative test means that the person does not have a KNOWN autoimmune disease. At least this is what a number of drs have told me. Ramakentish, do you mind if we keep chatting? As i said, i find these discussions very helpful. For example i did not realise that there is a disparity in the effects of NET inhibition centrally as compared to peripherally. What i really need to do is read more but i find it difficult since i have young children and am quite ill. Thanks again. BTW, you seem to have some science knowledge, do you mind me askng what your background is?

Ivabradine drops your heart rate but doesnt interfere with bp.

I guess i am asking the question about SNRIs for 2 reasons. First, a pure NRI, reboxetine causes a 35 beat increase in NORMAL people at 75 deg tilt ( http://circ.ahajournals.org/content/105/3/347) and second, a genetic mutation causing NET insufficiency has been implicated in some individuals with tachycardia and labile BP. Does a norepinephrine reuptake inhibitor mimic the genetic NET insufficiency? If not, why? Am i misunderstanding something?

BTW, is AVANZA a tretracyclic or an SNRI? ON wikipedia its listed as a tetracyclic but on other web pages it's listed as an SNRI.