An Interesting Case

[Twiggers]

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

[Turtle]

Welcome!

You might have already considered this possibility, but as you don't mention it, I'll throw it out there because these things on your list caught my eye.

Emotionless

Anxiety/SNS overdrive

No libido

Light/sound sensitivity

Allergies

I was just reading a random website I stumbled across (http://www.mthfrheds.com) and the website owner believes he has found a genetic link to many of his family's ailments, which include dysautonomia, Ehlers-Danlos Syndrome, and autism. These things I pulled out from your list CAN be associated with autism and autism-associated sensory processing disorder.

I understand that the disorder forcing you to be homebound and unable to move about as you desire causes depression, but I also see a decreased desire for social interactions with others expressed in your post (when friends force me...). Many normal introverts would identify with a decreased desire to go out and with getting overwhelmed in social situations and needing time to recoup adter, but so would many with autism. The more severe forms of autism, which are often also associated with intellectual disability, usually get the media publicity, but there are many high-functioning individuals like doctors who are also on the autism spectrum. Allergies, asexuality and/or no libido, sensory processing disorders, and feelings of being overwhelmed are also common. They aren't symptoms of autism itself, but they are not at all uncommon with it, either. Having autism is also a potential explanation for why you believe you were born this way.

Is it possible that you're facing both autism and dysautonomia?

Here's one rough screening test. it isn't diagnostic, but it can point out if you're strongly leaning one way or another: http://www.wired.com/wired/archive/9.12/aqtest.html

[Twiggers]

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...

[Kellysavedbygrace]

Welcome to the site. Sounds like you are getting much closer to a Dx and that is half the battle (albeit the easier half.) It has been a blessing for me too. I'll be interested to hear about yout TTT. Please let us know how it goes.

[issie]

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

[Twiggers]

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?

[issie]

Yeah, I think it's worth it. I think there may be things we can do about it. Even if it is genetic and we have markers show up, that doesn't mean we will absolutely have a mutation occur and we get the illness. We are just genetically more predisposed to having the problems. With some of the things that showed up positive in me and I know it's in my family - I can do things to support myself better now and hopefully, it won't cause as much of an issue with me if it does show up later. Not only that. . . .the whole point of us and this forum and our researching and searching is to find answers. Right? So, it will give peace of mind ---at least, somewhat ----if we have more answers. That's just how I feel about it.

You don't base EDS on the dryness of your skin or really even the stretchiness of it. How limber are you? Can you bend and keep your knees straight and touch the floor with your hands - are your fingers really flexible and you can bend fingers back or across further then most. I can cross my legs and bend over and put my hands flat on the floor - and I'm no young chickee. I don't have to warm up and I'm super limber and double jointed. Not everyone has the stretchy skin. Did you fall down and sprain your ankles a lot? Where you the little bit clumsey kid in school? What about vision and eye sight - did you get nearsighted at a younger age? Lots of things to look at. As we age, we get more stiff and less flexible in our joints - because we get osteoarthritis at a young age. (This info is not just for you - but others that may wonder about this.) I'm sure you've probably read this stuff before.

The near positive antibodies are possibly some indications of issues.

As for the MCAS - this is so new in diagnosing and docs looking at it. It is very hard to get DX'd. But, one thing some are trying are the H1 and H2's to see if it makes any difference. My doc is RXing Allegra - one a day and Pepcid - one a day. I have to take them at night because they make me too sleepy any other time. But, some are getting results with just that. I'm recently on GastroCrom and noticing more improvement then with just the two. I also use NasalCrom and that seems to make a difference too.

You can do searches on the forum about anything that may be of interest and pull up many, many conversations about all of this. If you decide to do the 23&me testing, I can tell you of some people that have helped me with the data and maybe you will be able to sort some of it out. It is very complex and complicated - but, I think I got some valuable info from it.

Issie

[corina]

Hi Twiggers, welcome at the forum. Hope your testing will give you answers so that you can work from there!

[Elenapap11]

Hi Twigger.I ve been struggling with dysautonomia since the age of 27 and suffered from severe allergic asthma as a child so i know the emotional rollercoster you must be going through.It's hard being young and not able to live life as your peers; but this is also a gift because it will teach you to appreciate and view life in a much more meaningful and wise way.Try to fill your day with things and people that make you feel happy and peaceful because stress is a major factor for deterioration.There are many useful tips in this forum which can help alleviate symptoms but what is mostly therapeutic is the support you can get in here.I truly hope you'll soon find the right therapy for you.