Hello fellow neuro talkers,

I come to you in desperate need of help and guidance due to a mix of perplexing symptoms over the last 8 months in-particular (However I do feel like this is something than began around 5 years ago, but symptoms settled for some time).

My initial set of symptoms began in 2011, with the onset of the following symptoms: burning dry mouth, numbness and tingling in arms, burning pain in shoulder, severe lower back pain, rashes & onset of extreme depression overnight. I was tested auto-immune due the number of conditions in my family (Lupus, Neuro Bechets & RA), but the settled on a diagnosis of depression and after around three months the symptoms settled and I continued life as normal (numbness and tingling continued periodically but didn’t affect my life as such).

Fast forward to 2016 and the symptoms seem to return and then some. All of the symptoms above returned but with some more nasty symptoms, including drying of all visible passages throughout body, swelling of cheeks in face, numbness on right side of face, loss of taste, sexual dysfunction, extreme coldness in hands and feet, sudden onset of a lot of eye floaters facial flushing, waking in the middle of the night with my heart rate going through the roof, extreme sweating through the night, electric bolts throughout my body, constant itching, intolerance to alcohol (and the list goes on). To accompany the symptoms I once again came down with severe depression overnight, it’s like the level of something changes in my body and I turn into a person I do not recognise (outside of these two occasions I am a very positive person and it’s never been a demon I’ve struggled with).

Once again the medical investigations began, firstly with the doctor suggesting the symptoms were caused by a sinus infection, secondly referring me to a rheumatologist (who did blood tests for Lupus & Sjogrens) and said there was categorically no sign of auto-immune and wanted me neurologically tested. Prior to seeing the neurologist I underwent Nerve conduction studies and an MRI (both clear). The neurologist has ruled no sign of any neurological damage and has suggested something has upset my nerves which has resulted in my depression & anxiety. I sought a second neurologist opinion as by this point I had looked at symptoms online prior to the appointment and felt quite convinced that the cause behind this was sjogrens, in particular neurological damage by sjogrens (my reading online always leads me back to Ganglionopathy, as the symptoms described seem to fit). The second neurologist disagreed with this assumption and said I showed no symptoms of autonomic dysfunction he would expect to see (issues with heart rate), and came to the conclusion of a “brain stem mediated central pain hypersensitivity syndrome” and prescribed anti-depressants. Four months after beginning the tablets I am still in the same position in terms of symptoms, I am managing to work every day but my quality of life is not very good. There is no other options for me in terms of medical assistance as the NHS has referred me both to a rheumatologist and neurologist. The only option I can consider if going private to a rheumatologist and requesting a lip biopsy but it is not guaranteed they will give this to me, especially as two doctors have suggested it’s depression.

I understand that a lot of the symptoms I have explained can link to depression but I believe 100% that there is something further causing this. Has anyone had any experience with the symptoms listed above in relation to Ganglionopathy? And also experienced depression alongside it?

Thanks so much for your time in advance,

Warm wishes,

Kirsty

Hi Kirsty

Welcome to NeuroTalk.

I am in remission from Major Depressive Disorder. When I was not in remission I experienced some of the things that you have described. I do not have any signs of ganglionopathy or similar.

I was on an anti-depressant for some years. After a while I decided to discontinue, with approval and monitoring from my psychiatrist. This was uneventful.

Another option which you could consider is seeing a clinical psychologist with experience of using Cognitive Behavioural Therapy (CBT) with his/her clients. CBT takes time and practise to learn but there is good evidence that it can be highly effective for people with Major Depressive Disorder and other mood disorders.

Using CBT methods, which my clinical psychologist taught me, has been invaluable in my staying in remission.

All the best.

Did your symptoms return during a seasonal short day length time? (shorter sunny days of winter?)

If so you might investigate light therapy designed for SAD--seasonal affective disorder.

When I was still working long hours before retirement, I often went to work in the dark and came home in the dark (long days) and started to really feel awful at those times. The light therapy worked very well for me and I still do it each autumn...but I don't need it for as long as I used it at the beginning.

This is the visor I use:
FeelBrightLight.com – The World's smallest, most convenient light therapy device. – Feel Bright Light Deluxe

I notice that the price has come down quite a bit since I bought mine. I keep mine on a trickle charge and it still works after several years! I have avoided antidepressant drugs using this light source only 20 minutes in the morning, on the lower setting.

Some of your symptoms suggest to me low thyroid functioning. So if you haven't had thyroid testing, I'd get that done too.

There are light panels that will sit on a desk or table, and some of them today are quite good. Just Google "light therapy for SAD".

Hello Kiwi33 & Mrs D,

Thanks so much for taking the time to reply, very much appreciated.

First to answer you Kiwi33, do you really think that depression can cause such physical symptoms? I’m not foolish enough to not consider that having a couple of specialists saying similar things makes the possibility of depression causing this, but I find it hard to believe it can leave such physical, long-lasting symptoms? I think having seen many family members deal with the weird and no-so wonderful effects of auto-immune disease I am very aware and very quick to link back strange symptoms to it. For instance the dry eyes, nose, mouth initially led me down the sjogrens route, and then with the neurological symptoms led me down the ganglionthraphy route. It’s so difficult having these symptoms coupled with the depression onset as even-though I know that the symptoms were very real it makes me doubt myself.

I have in the hope of helping myself signed up for some CBT sessions which begin next week. I will try anything to help me ease these symptoms and make life better.

Mrs D these symptoms did being in September so the nights were getting darker, and I have had my thyroid tested but everything is fine there. Will look into your suggestion for sure.

Thanks,

Kirsty

Kirsty, the physical symptoms associated with my clinical depression were waking up at night, extreme sweating and panic attacks. These have largely resolved through using CBT and deep breathing exercises. They may have exacerbated by self-medication with alcohol (I am also in remission from alcohol abuse).

As far as your possible Central Pain Syndrome Dx is concerned as far as I can see, based on https://rarediseases.org/rare-diseas...pain-syndrome/, this most commonly arises from physical brain injury.

I don't know if that is part of your history but the information in the link might help you in discussing this with your health care team.

You could have more than one thing going on with you.

I went to a medical seminar when Prozac first came out given by
Eli Lilly. There was a psychiatrist giving the talk. He made a statement that was very illustrative of how dismissive doctors can be of their patients. He said when confronted with a patient giving a long list of symptoms, (he called this the "organ recital")
just prescribe an antidepressant, because that is all that is needed.Then began the discussion of how tricyclics are so much more toxic than SSRIs and to switch patients to Prozac now.

I have never forgotten that day...I lost much of my respect for doctors then.

Dry eyes, nose mouth etc can be from OTC drugs, RX drugs and certain vitamin deficiencies. There are papers on PubMed about dry mouth responding to lipoic acid, and biotin. There is a poster here who had painful dry mouth and found relief from
a dopamine agonist used for Parkinson's!

You can get dry mouth from extreme fear or anxiety, which is an adrenalin response. But that usually is temporary.

I think your symptoms are very mixed. To blame "depression" is lazy and perhaps not helpful.