Horners Syndrome And Worsening Dysautonomia

[m@t]

A little over a year ago I was extremely fit and was always out cycling or running etc. I would go on 40 mile+ bike rides after work etc.

Then suddenly I started having migraine style visual aura and episodes of fatigue that meant I would be wiped out after some exercise sessions but not others.

I stopped training for a couple of months and then slowly started to build back up my exercise, every 3 to 4 weeks I would then crash for no reason and need a couple of days in bed before getting back to it.

Then early this year I started crashing after just going to the shops to buy groceries.

I contacted a neurologist who noted my pupils were different sizes during a crash and told me I had autonomic dysfunction with horners syndrome and arranged an MRI and MRA head and neck which came back "clear". She offered no advice other than to get used to it.

My heart rate rises from 45 to 95 going from lying to standing on a bad day and when asleep it drops down to 29bpm. All normal aparently!

I then started having other symptoms such as my BP shooting way up high to 190/110 all of a sudden whilst sat at my desk. My hands going cold and clammy to the point where no blood could be got from them with a finger prick for blood glucose whilst at the same time my face and head becomes flushed and hot to touch. Often I will have a tremmor at the same time this is going on and a crippling visual migraine aura. On consulting a cardiologist he tells me this is all also autonomic dysfunction and nothing can be done.

I had a couple of 24hr urine colections which were clear and a blood test for catecholamines which showed up 2x the reference range of a dopamine metabolite, but it has been decided that this is unlikely to be a pheochromocytoma as the level is not high enough.

My GP wont refer me to the Autonomic clinic in London as "I'm not bad enough".

So basically I have gone from being quite atheletic to struggling to do a full day in the office for a desk job! I have had zero support other than being told to "not worry about it" or "its all psychosomatic, you need an SSRI". I am just about at the end of my tether as all I want to do is crack on and get back to work full time and do the odd bit of exercise.

No point in a GP follow up as I refuse to be put on an anti depressant and that is their only "advice", no consultant follow up for another 4 months and that will only be a 10 minute waste of my time.

I'm 36 but may as well be 96 as I have absolutely no quality of life as no one will give me any advice on what I should do other than "get used to it".

Anyone else in the UK ever had a similar set of symptoms and actually managed to get treatment of aby kind? I have already paid out to see the consultants listed above privately as my GP would not refer. I feel incredibly let down!

Matt

[Gordon73]

Matt,

I'm also UK based and have some similar issues to your own, and 6 weeks ago was happily running 10k's without a second thought but it's all gone to the wall. Started from a left flank pain and progressed to tachycardia and very labile BP, anhidrosis, and bunch of other autonomic symptoms. I spent a night in hospital on telemetry and the conclusion was "you have a constantly high resting heart rate" (was previously in the 50/60s). Most of the tests I've had to force the issue through A&E or private consults, only way to get swift action. Have a 24hr holter on Monday. On a slightly positive note, an exercise stress test looked OK (clinically) although it just wasn't me .. deconditioning aside, it was a pretty low work load by my standards and my heart was already approaching max. All very weird. Even if it is somatic, it seems beyond me or anyone else to fix thus far .. my conclusion is that it's much easier (but not necessarily better!) to have a readily identifiable condition e.g. an actual MI, and everyone jumps into action. Anything borderline leaves you outside the system.

G

[corina]

Hi Matt welcome to the forum, I'm sorry you are struggling. I understand how you feel re the SSRI but you may not be aware that it might be helpful in treating POTS! I do hope that you will find a way to get into an autonomic clinic, there ARE treatment options that your cardio may not be aware of. Don't give up!

[Katybug]

M@t and Gordon73,

Welcome to our forum. I, too, am sorry you are both struggling to get a diagnosis and even basic treatment. As Corina mentioned, an SSRI is a potential treatment for some POTS patients. Whether it helps or not is likely based on the underlying cause of your autonomic dysfunction. There are some basic "over the counter" or lifestyle things that many of us do to try to manage, even with meds on board. These are wearing compression gear (knee highs, full length stockings, abdominal binders) and salt and fluid loading (much more than than just the basic 64 oz. of water that is recommended for a healthy person). My doc has me drink at least 32 oz. of Gatorade or equivalent, plus another 64 oz. of other non-caffeinated fluids. I do also use caffeine (in small amounts like 1/2 caffeine coffee or 1/2 a can of Coke) when my bp is low and I need a bit of a stimulant. Not all dysautonomia patients tolerate caffeine. There are days when I can't have it at all if my heart rate is too high.

Also, m@t, your mention of your hands turning cold with no blood and facial flushing might be indications that you should look into Raynaud's Syndrome and/or Mast Cell Activation Syndrome (MCAS). I certainly can't tell you if you have these issues but they are certainly symptoms associated with those syndromes.

And, finally, not that it makes it feel any better, but many of us here have talked about how fit we were when this illness took over our bodies. I trained horses and walked and hiked with my dog daily and had an enviable body mass index when I fell ill. It is definitely one of the hard things to cope with mentally about this illness, and, although it doesn't make it better, please know you are not alone on this bizarre ride.

Take care,

Katie

[SarahA33]

Hello, Matt, Welcome to our forum! Regarding the catecholamine levels, would you happen to mind sharing them? If you don't feel comfortable publicly, there is always the option of our PM feature -- in the corner there is an envelope where you can start to type in my user name and it'll pop up. I was misdiagnosed as a Pheo for 2 years until I was correctly diagnosed with POTS with a hyperadernergic Component. I have a tremor when my NE/Cat levels spike, sweat, cold , clammy, brutal migraines, anxiety, the list goes on.. Anyway, did they send you to an oncologist to rule out a pheo? How tachy have you gotten? Sorry that you are going through these symptoms. Also, Katie mentioned maybe checking into Raynauds, I have that also, and my hands and feet (mostly hands) get ice cold and turn bright red or purple. I believe that most people are treated with a low dose calcium channel blocker like verapamil or amlodipine to help with that, could you possibly talk to wit your doctor about that? I know from personal experience that all the symptoms you are going through right now are very scary, just know that you aren't alone in this and you are on the right path -- packing yourself full of knowledge and searching for a doctor who is willing to listen and help, it might not be easy, but it is possible...

Sarah

Hello there, Gordon73, Welcome to the forum as well! I'm also sorry that you've found yourself with similar symptoms. Since you were able to get the stress test and they admitted you had a consistently high HR, did they put you on a Beta Blocker or another cardiac medication that will slow it down? I hope it is able to help you out so that you can get back to those 10k's! - Best of luck to you - Sarah

[AngieP]

Hi Matt,

Just getting in touch to let you know that I totally understand what you're going through. Like you I used to get up each morning and run up and down my local beach. Exercise was a big part of my life. Then, I started getting episodes where I would wake up with sore, heavy limbs and struggle to walk to the kitchen. I'd lay in bed at night with tachycardia and horrendous stomach cramps and wonder what was going on?!

The debilitating fatigue, weakness and brain fog would come and go - it was bizarre and frightening. On good days, I continued to exercise - sometimes it would trigger an attack and like you, sometimes I would be okay. I felt like I was going insane.

It took me three years to get diagnosed with POTS and I've met some very insensitive doctors along the way. My GP had never heard of POTS - my first diagnosis was anxiety/panic attacks. There is a real lack of awareness of POTS within the medical community.

My current cardiologist is amazing - I'm up to my third one. My first cardiologist misdiagnosed me with SVT and wanted to perform an ablation immediately which prompted me to get a second opinion. My second cardiologist worked out I had POTS but was extremely unhelpful - 'consume lots of water, salt and just deal with it'. Thankfully my current doctor witnessed one of my flare ups in hospital and took the time to listen to me. I feel very lucky that I met that man because I was at breaking point.

I guess my advice to you is don't give up searching for a doctor that will give you the care and treatment you need. My cardiologist put me on a beta-blocker and it has helped a lot. He also organised for me to see a neurologist, and arranged tests to get some nasty things ruled out (carcinoids, pheochromocytoma etc.) which gave me peace of mind.

I realise I'm lucky that I'm not plagued with symptoms on a daily basis, they come and go but this condition has greatly altered my life. I work from home so I can rest when I need to, I no longer exercise the way I used to, and I have to be very strict with my diet. And no matter how carefully I manage my lifestyle, flare ups still occur which is frustrating and scary.

What is happening to you is real - it's not in your head and I hope you get the medical care you need.

Angie

PS. I feel we have quite a few similar symptoms - like you my BP also shoots up during an attack, I get icy hands and feet and I shake. Feel free to PM me any time.

[m@t]

Blimey, I was expecting an email notification of replys but didn't get one and on checking back I see many replies!

Gordon

How much training were you doing? Have you looked in to Overtraining sydrome / unexplained under performance syndrome? I thought this is what I had originally, but in the end it didn't fit, I did however learn quite a lot.

One of the ways of identifying mild overtraining is to look at your waking heart rate every day and if it is say suddenly 10 bpm higher when you wake up one day then it is highly likely you have not recovered from your previous exercise session and should treat that day as a rest day.

Not sure how much use that is to you but it may be worth checking out?

Corina

I understand what you mean about SSRI's but the problem with GP's is once you get put on an SSRI or similar any new symptoms are put down as side effects and any if they don't relieve the symptoms you are then pushed up to the maximum dose before having to move on to the next one. Having seen someone go through this in reality coupled to side effects and widthdrawl effect I would rather give them a miss.

Katie

I wouldn't say I have truely POTS style syptoms, it seems to go on sasy a 4 week cycle. Sometimes my HR only bumps up by 20 bpm from say 45 to 65 bpm then at another point in the cycle it will go from 45 to 120bpm. I never have low BP, its always up in that 140/80 region or higher so I don't get a postural drop. I did ask my GP if my hands look like Raynauds and he said it wasn't Raynauds but he couldn't say what it was.

I see you have been diagnosed with Lyme, I had a Negative ELISA and a sub threshold IgG OspC band on the Western Blot which I may consider pushing to be investigated further. What was your experience?

Sarah

That's an interesting story you have there! I have had two blood and urine tests for catecholamines and metanephrines. The first when I just didn't feel right and everything was in normal limits other than plasma 3-methoxytyramine which had a level of around 250 with an upper reference range of 120. The second when I had the shakes and cold hands I don't have the plasma results for yet but the urine was in normal limits. What were you levels like? I have had no endocrinology refferal or anything else for scans of chest / abdomen etc. The worst I have got in terms on tachy is about 150, ah gone are the days of sitting at that heart rate for a few hours enjoying it as part of exercise!

Angie

Blimey, that is so similar to my symptoms! How are you managing your diet? I keep asking for advice on this but I don't get much of an answer from the pro's! I don't suppose you have ever had the migraine, horner's or RAPD too have you?

Can you give me any more info about what happened when you started on the beta blocker? I am guessing you aren't in the UK?

All

Thanks for your replies, it's great to have some others who seem to have a clue what I am on about! More than happy to get PM's if you don't want to continue here!

Cheers

Matt

[corina]

Matt, I noticed you checked the "follow this topic button", are you receiving email notifications now?

[m@t]

Corina, I checked that box on the first post, still not getting notifications! :-(

[corina]

Okay, thanks for letting me know! I'll see what I can do for you!

[corina]

Have you been checking "My settings" in your profile Matt? You can set/change notification preferences in your User CP (after clicking on notification options).

[m@t]

Ah ha, thanks corina, there was no tick in any of the email boxes on that page... Hopefully fixed now!

[Katybug]

When I became ill, I seemed to have an upper respiratory infection. So I was treated 3x over the course of 3 months for URIs. When I continued to get more symptoms, I was finally tested for Lyme and several Lyme coinfections (8 months after initially becoming sick.) My Lyme tests were negative but I was positive for Babesia. I was told that they were going to assume that I did actually have Lyme because I had Babesia. The doc said that the bursts of antibiotics may have screwed up the Lyme tests which aren't all that accurate in the first place. All of my problems started with the Lyme/Babesia. It is known that Lyme can be the cause of dysautonomia/POTS. I no longer test Poitier so docs will not give me antibiotics. However, when I have antibiotics for something else, I always feel "well" including my POTS, then I regress after being off of the antibiotics for a couple weeks. If you think you have Lyme I would pursue it. I have ridden/trained horses most of my life, so I know many people with Lyme since we are a hyper exposed population to ticks. Not one of us has ever been right since we were diagnosed with Lyme. Most are functional but in pain most of the time, but some have developed severe disability. It definitely needs to be treated if you have it. Unfortunately, the Lyme tests are completely unreliable. Have you been tested for Lyme coinfections? Many people actually have coinfections comorbidly with Lyme, and, many of the tests for coinfections are much more reliable.