Twiggers

Mine don't seem to come closer to together. They just go up initially. Along with HR

Storm coming in right now.. and I feel fantastic. I'm actually buzzing! Always happens to me. No bloody clue why though

Would like to reignite this discussion as my OI involves a strong increase in diastolic BP when standing.

Sometimes over 100 and increasing by 20 to 30.

However, my BP is always on the higher side.

Does anyone else have a resting BP around 130-40/80 then it rises 10 points or more when standing?

I have tried essentially every SSRI on the market and I've been on Cymbalta before (SNRI) as well.

Unfortunately with these meds the side effects are mostly too much to handle, however if you can tolerate one they do work nicely in the background for dysautonomia.

My History:

Lexapro - violent diarrhea and vomiting

Zoloft - constant urge to urinate that never went away

Prozac - suicidal thoughts and circulation that felt like over vasoconstriction

Paxil - stayed on this for almost a year and noticed a subtle improvement *Decided to come of it last month and now I am doing much worse..

Cymbalta - did absolutely nothing for me, almost like a sugar pill.

My plan is to try go back on one again because my life was better on paxil than it is now or was before. My GI issues completely cleared up, I had less anxiety and I felt closer to women in relationships and felt less detached. Since I came off paxil my life has deteriorated on several levels. This is likely a combo of withdrawal effects,however, I felt my pre SSRI body was much more unpredictable and disabled than during my SSRI period.

The greatest advice I can give dysautonomia patients interested in SSRI's is to aim low. What I mean by this is to aim for a low dose (higher doses lead to worse side effects and for no real gain for us) but also keep your expectations low because often the benefit of these meds are quite subtle and you don't realise the benefits until you come off them (and let me tell you that is no picnic).

Pseudo helps me sometimes.. other times it doesn't.

It releases norepinephrine from vessicles. Normally works once.. then your body has to restore the NE so it doesn't work for another few days.

Probably the only thing that has helped me when it does work tho.

I've had this since childhood and my libido has alway been way below that of my friends.

Think it's a combination of poor circulation and the constant activation of the Sympathetic Nervous System which over rides the Parasympathetic. The PNS is responsible for arousal and desire from what i've read, and the SNS is for ejaculation.

Is it perhaps possible that instead of one specific autoantibody being way too high as in most definable autoimmune diseases, we have many that are moderately too high? This would then account for the wide array of different symptom manifestations in POTS... yes? Some people might have higher levels of one than another or some have no antibodies to certain receptors etc...

I know in my case I have Graves antibodies and Hashimotos antibodies all just within range but much higher than normal persons.

The next step from here would then try to understand why we have a cluster of autoimmune antibodies too high - and go from there... Some sort of immune dysfunction at the cytokine level? Or is it from our malfunctioning nervous systems? I really don't know. But we need to figure this out.

I think there is absolutely a subset of patients with an autoimmune pathology To their dysautonomia/me/cfs. Howver, these antibodies are just one that thy have been able to pinpoint. It is probable that there are other autoantibodies at work as well, so if you don't test positive for achr antibodies, it does not mean you don't necessarily have an autoimmune process going on. This is part of what underpins the recent rituxan studies - the hypothesis that an an unknown auto antibody is being knocked out by the rituxan and thus makes the patient feel better.

Here's a case study of a dys patient w high achr tigers who experience improvement from rituxan.

http://www.ncbi.nlm....1177702aff-info

It seems that lowering antibodies and/or Cytokines really does result in symptom improvement in CFS and POTS.

However the recent Rituximab findings weren't very promising as a high percentage of remissions in CFS do not stay.

Regardless of this I still look at the positives and think that this area of research is the most promising and that we are getting very close....

Sorry you had to find us. But, you will get many of your questions answered here.

I'm HyperPOTS and hate the cold - I'm also vasoconstricted. So, you aren't alone with this.

Have you checked to see if you may have Ehlers Danlos (EDS)? And also Mast Cell Activation Syndrome (MCAS)? Many of us feel we were born - like this - of course we don't remember our early, early years - but, I can remember back to about 5 and was always sick. My "standout" memory was when I was about 8 and had a vaccine to polio and that landed me, my sis and a friend in the hospital and out of school for 3+ months. I have found with genetic testing that lots can be explained with genetics. Nearly all the things I deal with can be. But, whether or not there are things that can be done to improve quality of life ----well we will see. I am finding things that are helping - I'm by no means well - but, am somewhat better. Time is supposed to improve this - if the protocol I'm on is the right one. I would look into the Methylation Pathways and see if there is a genetic mutation that could be causing some of your issues. I don't know if you've done the 23&me genetic test yet . . .but, may be worth looking into.

My doc is thinking us "long timer" Potsies may have a MCAS connection and that can also be connected to autoimmune things. You might want to look into autoimmune things - as a good many here are connecting that with our problems too. I'm Hypogammaglobulin on subset 1 and showing positive antibodies to different things. So, this contributes to more illness - although I don't get sick that much - but, am really careful who I'm around and taking care not to catch something.

Yeah, you don't sound autistic ---maybe more artistic. Good going. You'll have to let us hear some of your music.

Don't let the search overwhelm you ---take it one step at a time. Hoping for answers.

Issie

Thanks Issie, you do sound a bit like me. I've read many of your posts before.

Yeah I have antibodies test positive for various things including graves and hashis but all are not too far out of range.

I don't have EDS based on it's symptoms. If anything my flexibility in joints is worse than most people and my skin is very dry and not stretchy.

As far as MCAS goes, well I haven't been tested for that and i'm not sure how you can confirm that but I have many of the symptoms.

I don't have flushing or abdominal pain. Dermatographism is quite mild, skin does go red and the lumps are not really big but they are there I guess.

I'm interested in this genetic testing, but is it worth it if you can't really do anything to treat it anyway?

Hey, thanks for the insight. But no i definitely don't have autism.

I'm a musician and play weddings etc, I have a degree in business and I am very good in social situations.

It's more just the fact that I don't feel well enough to use the energy...

Hi Guys,

I'm a long time reader first time poster from Australia.

The interesting thing about my case is that I have had the majority of these symptoms since birth. I am getting a TTT done next week to confirm POTS but I am close to certain that this form of Dysautonomia has plagued me for 24 years.

Poor/Slow Circulation

Brain Fog

Fatigue

Depression

Emotionless

Anxiety/SNS overdrive

Cold hands/feet

No libido

Light/sound sensitivity

Allergies

Anaphylaxis - Peanuts

Immune Dysfunction

IBS

Inability to stand for long periods

My supine heart rate is 85 and blood pressure 125/70. On standing HR goes up about 25-30 beats and BP goes up as well.

After a period of time my feet get very sore on standing, I get breathless and tired.

I have tried elimination diets, vitamins, herbs and thyroid/adrenal hormone replacement. None of which have helped me. Hydrocortisone lowered my sensitivities somewhat but nothing else.

When friends motivate me to come out I can muster up the strength and sometimes look like a normal person when with them, but If i over do it I get sick with a cold or sinus infection and need to recover. Most of the time i'm house bound feeling horrible.

So after being told I am depressed (which I am because ive been sick for so long) or told I fall into the chronic fatigue basket and can't be helped. I decided to take research into my own hands. After having two phone consults with Dr Holtorf CFS expert from America and trying his recommended treatments to no avail, I came across a CFS website that mentioned POTS. Every single symptom they mentioned I pretty much had since I could remember. Eg Problem taking showers, crossing my legs on sitting and standing etc...

I then found this website and have done hours of research thanks to you wonderful people.

So I am happy to at least have found a diagnosable and relatively treatable illness now that I can tell people. Even if I don't quite fail the TTT I will be still certain that i have a certain variation of POTS. I am seeing a Cardiologist who has an open mind and is willing to try any treatment that will improve my quality of life.

Based on my symptoms and individual characteristics i believe i fall into the Low Flow category or Hyper category. In contrast to many of you here, I prefer warmer, more humid weather and despise cold weather. My veins are extremely vasoconstricted and I am very cold sensitive. I don't get any circulation to my skin or extremities, leaving me quite pale.

I have never been able to relax, and I hope that some pharmacological treatments can help me do this and in turn improve my peripheral circulation. As sad as this sounds, I will take even a 15-20 percent improvement because I have no idea what feeling well is supposed to be like.

I hope that in the coming years we can increase awareness about this condition and in turn find a cure. In my opinion there very well could be an autoimmune cause behind this and that POTS and CFS are just variations of Dysautonomia under the same umbrella.

Look forward to discussing everything there is about this condition with you all.

Thanks