Dysautonomia?

[Entwicklung]

Hi all,

I hope I'm in the right place here... If not please bare with me, I'm still relatively new to the site. However, I've encountered some wonderful and helpful people on here on some active forums who've been super supportive. I'm grateful for this.

Like many others, I've been on a long journey trying to find the root cause of my many symptoms / health issues. My bio includes some details, but some highlights are HR and BP issues, terrible brain fog and forgetfulness, aches and pains all over the place (particularly the kidney area), sleep problems (waking at 2-3am), exercise intolerance, cold intolerance (lately), vision problems (mainly with bright light), neck pain, gastro emptying issues, dizziness, sporadic migraine with aura ... The list goes on. Many of the problems appear on the pots/dysautonomia list and sometimes this is extreme, like I need to lie down all the time just to get through the day. Other days it can be better, but it's never perfect. Each day feels like I'm having to adapt a lot to make things work. I was previously very fit but now I'm reduced to struggling during basic tasks. Not right at 41. A strange symptom is that my pupils can't maintain a constriction under bright lights, they sort of opem and close instead of staying closed. This was suggested as an endocrinology symptom but I've heavily explored that avenue.

Another strange one is that my heart rate isn't dropping when I sleep, sometimes it even rises if symptoms have been exasperated in the day.

After a long, expensive journey root causes in the following areas have been ruled out: cardiology, gastroenterology and more recently, endocrinology.

Dysautonomia appears to be high on the suspect list at this point... I'm just feeling so lost with it all because it's debilitating and affecting my home and work life. I've not got the energy to play with the kids any more which is devastating for them and me

... I'm in my dream job and cracks are starting to appear so I'm trying to get to the root cause of my health problems so I can best fix them.

I've had a MULTITUDE of tests including all the bloods you can think of, echocardiogram, 24hr BP and HR monitors, SST, abdominal ultrasound, MRI of pituitary and abdomen, CT abdomen and urine analysis.... The only things these show up on the most part is a consistently raised ferretin (700), some other iron markers (potentially due to a heterozygous Haemochromatosis diagnosis that I have) and a raised renin level. An empty sella was noted on the MRI but nothing that has worried doctors at all as I've gone along this long, fruitless journey.

My question really is, how best can I start trying to get assessed for Dysautonomia?

Any advice, thoughts or advice VERY much welcomed.

[Entwicklung]

By the way, things that appear to help are:

1. Lying down

2. Cold compress to the neck (vagus nerve?)

3. Avoiding being too hot (cold seems to help with symptoms but is also uncomfortable)

4. Avoiding eating full meals (eating little is better)

5. Avoiding exercise (I'm trying to walk more because that's about all I can do without exasperating problems)

6. Avoiding stress

7. More rest

8. Staying well hydrated

9. Salt appears to help

10. Sunglasses

11. Breathing exercises are also useful sometimes to a small extent.

[Shimmyaway in reply to Entwicklung]

Have you looked at COMPASS 31 for a self assessment of dysautonomia? I think the USA site/clinic for FND in LA , called REACT has some info about dysautonomia. I suspect most FND sufferers have some degree of dysautonomia.. but have to whistle for assessment in this area.

You say that salt helps, and water .. I think Sanjay Gupta (POTS expert) in his podcast on POTS mentioned that, and also explained why .. worth looking up?

You seem to have had more investigations than most , but a lack of subsequent 'Entwicklung'. Best wishes.

[Entwicklung in reply to Shimmyaway]

Thanks Shimmyaway, appreciate the info here and you taking time out to reply.

Haha yes indeed, not much 'entwicklung' at all considering the time, effort and money put into the investigations. I think I just need to put my info in front of the right person, as often seems to be the case.

I've saw some of Sanjay's info before on YouTube (ninja nerd is also great to gain an. Insight into what's happening), but I need to revisit so thank you for this. I think it was his work I came across when looking at the gastro-cardio relationship, as I definitely notice troubles here. Research is important... At this rate, I'm feeling like it'll be down to me to figure out how best to 'live' like this.

Compass 31 I'd not heard of at all, so thank you... I need to look into this. I would be interested to see if a self assessment suggested I'm on the correct path.

Thanks again for this... Any advancements I'll post an update.

[Shimmyaway in reply to Entwicklung]

I do hope your research leads you to some better outcomes than you have managed so far, From reading posts on here FND is very much a DIY journey involving a lot of trial and error. One of the difficulties is not seeing a doctor with a holistic outlook, as each specialist has their own lens to look at the problem, and the NHS doctors don't have the time to fully think out the problems encountered by individuals, and tend to walk a predetermined pathway in terms of offering treatment.. or none at all.

I don't know if you have considered acupuncture ..some practitioners are really good at wanting to fathom out what is happening with the body, and even if their usual roadmap does not yield results will work by trial and error to try and help. I was impressed by what I saw on the 'beyondpain' website of an acupuncturist in Bristol and this encouraged me to try this route. It is slow progress, but the right enquiring attitude for dealing with the weird symptoms of FND (not sure if you have this diagnosis ..I do.)

The only other suggestion ( and not from a medically trained person) is to look to see if you are doing your best for your microbiome, which would impact your immune system, that sounds as if it is fighting lots of fires all at the same time.

Best foot forward

[Entwicklung in reply to Shimmyaway]

Ah thanks, really appreciate that. Hope you're making progress too - it sounds like you are which is great.

I've tried acupuncture a few years ago but I didn't have problems like I do now. I'm quite open to alternative methods and I'd much prefer a 'natural' escape as opposed to medication if possible. I'm only willing to take medication if there is a definitive diagnosis and confidence that it is necessary and will work to improve quality of life long term. I won't negotiate on this and lots of people around me don't understand, they just want me to blindly take whatever is offered to tackle symptoms. Given, I'm suffering more at the moment than perhaps I need to, but I would be very anxious about taking serious medications without the commitment of a diagnosis from a doctor at the minimum.

I currently do breathing exercises and have practiced win hof for a few years. At the moment I'm really struggling with cold exposure though because I've become really cold sensitive, so it's just breathing for now.

Interesting what you say about the gut here too, I'm on board with this being a key player. I've recently introduced ginger which seems to be helpful, and have some probiotics I'm going to try to build in too... I'm just a bit dubious on this as I do get some mega bloating at times which made me go down the SIBO rabbit hole... I wouldn't want to add extra biome if I'm already overgrown if that makes sense.

P.s I'm intrigued, how did you know what Entwicklung means? Not many people have come across that word before!

[Shimmyaway in reply to Entwicklung]

No problem with Entwicklung .. I once taught German, but I believe it is used in the computing world now ?

I think it is the quality/nature of the gut bacteria in the system that counts, rather than the amount .. ZOE/Tim Spector has lot to say about this. SIBO is too many of the bad guys isn't it ?

I agree with trying to avoid meds, unless absolutely effective. My acupuncturist tells me he treated a psychiatrist with depression not so long ago ..she came because she did not want to take the drugs ..which she probably prescribes on a daily basis to others!! After a doctors arm twist, I took 2 doses of a 10 mg SSRi and got constant shaking and paresthesia .. soon stopped those.

Unfortunately the solution is not in a tablet for most of us on this FND forum.. it's more systemic and more difficult to pin down...but we can't give up.

[Entwicklung in reply to Shimmyaway]

Ah I thought that might be the case! I only came across the word due to a love of BMWs in my younger days. Sensible / boring cars only these days unfortunately.

Yeah this is the kind of situation I don't want to get into with the meds. Some people have blind faith in the medical profession and think everybody else should too. I value it greatly and the efforts of our doctors and medical staff, but they're only human. Sounds like you're doing a great job figuring out what works for you though and making improvements!

Yes SIBO is more of the bad guys from what I understand... Dr berg has a great channel on YouTube that I rate highly, that's where I learned about this. I'll do some more research (that's for the Spector heads up), and see about more good guys. I know bread seems to be causing me issues, so I'm cutting that out for now to see how it goes. Seems positive so far (less bloating), but not the end of my issues by a long stretch.

[Shimmyaway in reply to Entwicklung]

Had you thought about gluten intolerance or considered taking magnesium. ?. good for sleep, good for elimination, and good for the heart . See Sanjay Gupta for the heart connection. Also good to calm the muscles for those of us who shake or tremor with FND.

[Panther5000]

Uncertain if it is the same in the United Kingdom. I went to PT a bit ago and they said if I wanted a dysautonomia diagnosis I would have to see a neurologist. Here in the United States they test your blood pressure while lying down for a time, then take it again 3 min later for three times. Then they have you stand up let it settle again for a few then take it ever 3 minutes for three times. If any of the numbers are off by 10 or more something is off with your autonomic nervous system. My PT did the test but can't official diagnose dysautonomia. But here PT helps people with this problem. Do you have swelling in your feet or hands? I have hopes that my nervous system will start working right again.

[Entwicklung in reply to Panther5000]

Ah that's interesting about the PT; sounds like they're quite knowledgeable. A neurologist sounds like the most viable option, but it also seems that in the UK cardiology deals with POTS. I'm looking into this at the moment.

No swelling here, only my belly I suppose, but I do need to lose some weight also.

Ah I hope you're making progress and that you see some improvements soon. Many thanks for offering your thoughts and experience.

I'll update with any progress.

[Panther5000 in reply to Panther5000]

My dysautonomia is not POTS. My blood pressure isn't well regulated. It fluctuates up and down while lying down or standing. The only heart symptom I have is my heart rate can increase while exercising higher than it should based on activity. So I can be biking and barely start and my heart rate is at a pace that should happen with strenuous prolonged activity. I also think my temp is showing signs of being affected to. For a year it has fluctuated between 99.1-100.3 rarely going down to my normal 98.6. Also uncertain but think my weight gain also is connected somehow since the autonomic nervous system regulates that as well. My weight has been fluctuating a lot lately.

[Panther5000]

It was a neuro PT which is more specialized here. They did somethings that I had no idea about. Some of the things you are doing could help so you won't have any swelling. Most my swelling went away once I started eating more salt.

[Entwicklung in reply to Panther5000]

Yeah salt seems to be involved for sure. One day I lost like 5 pounds then put it back on over a couple of days. The water balance has been off at times but seems to have settled now, which helps. I think when I suffered the worst pots symptoms ever it was all related to this. BP and HR went all over the place too. I'm working out little things that are helping but it encroaches on my life so much... Dealing with pain and other problems every day is draining.

[Panther5000]

I have only been once but I already love my nue PT person. She took the time to figure out what FND was affecting in her areas of expertise and chose the one that would help me the most at this time. It was working on my autonomic nervous system. She took some of the trial and error you have had to do out of it so I think I have seen results a lot sooner.

[Entwicklung in reply to Panther5000]

Ah that's brilliant! It's great if you can connect with somebody who is knowledgeable and genuinely cares. ⭐

[Shimmyaway in reply to Panther5000]

So what did your neuro PT recommend you do to help your autonomic nervous system? I have been doing a daily walk, deep breathing and yoga/Pilates ex for 2 years plus, and whilst I have always been fully mobile pre and post the FND diagnosis, my nervous system is still such that, if I rub my back, my foot starts jerking and if I hear a mobile, I am likely to make unpleasant noises which can scare some people...and I am not a panther!

[Panther5000 in reply to Shimmyaway]

I wear 20-30mmHg compression socks while awake.,3-5 g sodium everyday, 80-90 ounces of fluids mostly water and liquid IV, I also use a stationary bike for 10 min a day with the goal of my heart rate staying between 100-110. They said to exercise while sitting down at least for now. I do a warm up on the bike for 5 min just so I can get heart rate up to 100 fairly quickly when I start my 10 min. Then I do stretches after mainly leg ones. As my body can stabilize my heart rate and I have no other symptoms after I can start to increase the time I bike for. Until things improve they don't want me to do any other exercise. I am not to miss more than a day or two or I will have to start all over again. Things have improved but I am still experiencing symptoms after exercise. The heart rate is more stable than it use to be. This is to calm everything down and to teach my body to regulate things better.

[Shimmyaway in reply to Panther5000]

Hello Panther .thanks for taking the time to reply. So it looks like its the regularity and constancy of your 'regime' that is what is having the effect of calming your system down, and hopefully improving the self regul- ation .. .. which I will now try and build into my own regime, on my stationary bike. I don't have problems with heart rate or POTS, but after exercise, and often with none, my body shakes and I make weird noises as air as expelled from the chest.

If (a big one) I get to see a neuro physio again, I will mention what you have said. I saw a n-physio 2 years ago, but after finding a satisfactory fitness level, she just sent me away to fix myself... with no guidance. Since then the shaking area (now the chest) has changed, and with it noise production! Thank you so much for sharing the details of your regime...and happy pedaling.

[Lady4]

Let me check our pre-recorded Education Classes and see if I can find the diagnostic criteria. The test above that mentioned standing, lying, sitting etc sounds familiar for POTS, is that a heart rate variability* one?. I know they do a lot of floor exercises for POTS and restorative yoga comes to mind. Also I think a lot of people have HRV monitors (listening to their body).

* This is the time inbetween the heart beats.

[Entwicklung in reply to Lady4]

Ah thanks Lady4, I appreciate it. Yes my watch keeps an eye on hrv for me, it's in a poor state recently. Baseline mid 30s, but lower generally and sometimes in the 20s when things aren't great.

The restorative yoga sounds interesting and on the right path. I've read about recumbent exercises to help get going again, which I think will be needed. I'm doing walks, but when I overdo the activity in a day (absolutely pathetic compared to what I used to do), it has a negative impact on hrv and my sleeping heart rate goes up high. That's the bit that worries me also.

[Lady4]

Correction: test above is called the Active Stand Test where they measure heart rate and blood pressure.

HRV test is measuring breaths inbetween.

You have also got the Tilt Table Test (Cardio can diagnose).

The class I just watched shows breathwork is great to higher HRV (they measured before and after on a Lief Monitor).

I think graded exercise helps too.

So you are worried about sleep apnea?

[Bee-bop]

Hi there,

Has anyone mentioned Chronic fatigue syndrome/ME to you? I have this with dysautonomia and get many of the things you mentioned. I have to rest and pace, my dizziness etc is not POTS. Sometimes just having a name to things helps although there'sno magic wand for any of them. My daughter has FND and I think that rest and pacing is useful for all these conditions as well a CBT for FND, is currently what is prescribed.

[Entwicklung]

Hi all, I'm going to write this as a single response as I've had big news today after a visit to a cardiologist who also specialises in POTS. He did a full review of my extensive records and results, examined me and has confirmed a diagnosis of Dysautonomia.

This is absolutely huge, I feel like there could be light at the end of the tunnel now 🙏

He said I need further tests (tilt, stress and some others?) to see what systems are affected, so he can best help with the plan on how to improve things.

I really appreciate all the thoughts and input here everyone, and I'm sorry for the singular reply (I didn't want to write the same thing multiple times).

I'll update when I know more.

[Lady4]

Thats great, I am so pleased you are in a better place and hopefully on the way to getting your life back, be it with a few adjustments.

[Entwicklung in reply to Lady4]

Ah thanks very much Lady4, that's much appreciated. Although it's still going to take some time to get it all organised and firmed up (the type of disautomia issues I have?), it's such a great start and I have an end (or start!) in sight. 🔥

[Lady4 in reply to Entwicklung]

Your welcome. I watched a interview with a lady who has POTS, Long Covid & MCAS and pick up a few great pointers, so will create a post.

[Entwicklung in reply to Lady4]

Wow that's interesting, was listening to a similar podcast recently.

The cardiologist that I saw recently also wants to rule out mcas due to some unusual marking that happens when I rub my fingers over my skin, it's quite reactive. Seems like a lot of these things are linked together, as well as hypermobility apparently.

Will keep an eye out for your post!

[Lady4 in reply to Entwicklung]

I put a link to the official MCAS in another post for you.