Severe dysautonomia symptoms -- scared

[out****spot]

I have a history of severe depression, anxiety, PTSD etc.

I was determined treatment-resistant, yet continued to endure unbearable levels of stress due my living environment; no abuse per we, just intolerable levels of overstimulation.

One year ago, I finally crashed and developed a cluster of disabling symptoms that no one can really piece together (not that they're trying very hard).

Initially, it looked like 'adrenal fatigue' with symptoms like reactive hypoglycaemia, tinnitus, dizziness on standing etc.

Then, due a mildly elevated TSH (3.3), I became convinced it was hypothyroidism, given I also experienced weight gain, temp sensitivities, slowing of facial hair growth, low vit d, low b12, low body temps, peeling skin.

However, treating the thyroid did not work -- it only crashed me further and worsened my fatigue.

The symptoms that have become most worrying and disabling over the interim look like some kind of dysautonomia.

I notice: a ) unsteadiness of gait and feeling off-balance when I walk; sometimes I can sway violently side-to-side as if I'm on a boat. Exertion worsens these symptoms.

and b ) An extreme heaviness/weakness/fatigue, combined with a strong sensation of gravity pulling me downwards .. Sometimes when I move from lying to sitting, and sometimes when I move from sitting to standing. Standing seems to exert extreme stress on my body and I will feel my legs growing heavy, extremities tingling, a sensation of sinking into the ground, pressure in my face, and a sensation that I will eventually faint. I have not really stood longer than five minutes in the past few months. I can feel adrenaline pump through me all day and it makes me agitated, anxious and sensitive to noise. The cognitive problems are awful -- I feel like I'm in a fugue state often. I'm bloated and have frequent diarrhoea.

I initially saw a neurologist who dismissed me but ordered an Mri. However I was growing too weak to make it to doctors' appointments anymore and also became actively suicidal. My GP stopped believing anything was wrong with me due to my anxiety history so referred me to a psychiatrist who suggested a psychiatric ward, where I currently am. Because my nervous system has grown so sensitive with this, I have refused all meds. However, they have suggested ECT (it's my choice -- I'm here voluntarily). They are also going to look into neurological causes out of liability and have ordered an MRI and the neurology team will see me at some point.

It isn't really a horror story of POTS patient in psych. I know my history of mental illness led me here. But I am so scared because this almost feels like the end of the line -- I mean, the anxiety/depression was bad enough, but I feel physically disabled now at the age of 30. And being in psych in such an incapacitated state is scary. Not to mention going back home like this.

They wanted me to see the neurologist I saw as an outpatient but I googled and found that there is a neuro in here who specialises in POTS/dysautonomia and have requested to see him if possible.

On the one hand, it would be amazing just to have someone confirm the issue. I also pray the MRI shows something tangible (even though I doubt it will). But I don't even see what can be done really, given I never tolerated psych meds anyway, and all of this was probably caused by stress, which I can't reduce now.

My own guess is that I have developed CFS or post-viral fatigue given the cluster of symptoms -- adrenal, thyroid, dysautonomia. But I don't know how to prove that or again how it would help. The admitting psych mentioned autoimmune blood testing but I don't know how comprehensive they are going to be.

i don't have the energy or money to fight this all anymore. It feels like it's going to kill me. 

 

[Amalia01]

Sorry to hear that you are going through this.  My sister was just recently diagnosed with hypothyroidism and found out later that it was due to Hashimoto's.  Have they tested your thyroid antibodies?  A lot of thyroid patients struggle with proper treatment with the right medication (Some had to treat the adrenals or try different meds). Have they checked your cortisol levels?  Did you see an endocrinologist? The endocrine system has a large effect on hormones and how you feel both physically and mentally.  She really liked the website http://www.stopthethyroidmadness.com/ as it had patient feedback to treatment and offered a lot of information about the endocrine system.  She felt better prepared for her appointment with the endocrinologist and it went well.  I am not a doctor but I do know that this can largely impact how you are feeling.  When I have the sensation of gravity pulling me to the ground it is usually due to low BP.  I feel off balance as well at times. Have the doctors considered testing for a mast cell disorder? A lot of things can throw us out of whack. It can be really frustrating dealing with the doctors and trying to figure out what's going on.  I'm spacey so I hope I am making sense. 

[SarahA33]

Hi and welcome to the forum,

I really hope things start to improve for you soon and am sorry that you are going through a difficult time right now.   You mentioned feeling adrenaline rushes, this is a typical complaint amongst POTS patients. This can be caused by a # of things -If you have low blood volume or are dehydrated. Also, if your experiencing low blood pressure's or fluctuations in pressure's, as well as having a hyperadrenergic component of POTS. Changes in Blood sugar levels can also cause adrenaline surges.  Measuring the catecholamine levels(noradrenaline, epinephrine, dopamine) in your blood, through a blood test done in a lab (sitting quietly for 30 minutes, then standing 10 min apart) and also some doctors will do this additionally during a tilt table to  correlate w/ your symptoms. Mine were quite elevated and the addition of clonidine and beta blocker, which counter act adrenaline has helped immensely.

I think your on the right track with pushing for a consult w/ the POTS specialist, if for whatever reason you need to access another Dysautonomia specialist in your area in the future, here is our physician list: http://www.dinet.org/index.php/physician-list  Sending positive thoughts and wishing you the best - Sarah

[out****spot]

13 hours ago, Amalia01 said:

Sorry to hear that you are going through this.  My sister was just recently diagnosed with hypothyroidism and found out later that it was due to Hashimoto's.  Have they tested your thyroid antibodies?  A lot of thyroid patients struggle with proper treatment with the right medication (Some had to treat the adrenals or try different meds). Have they checked your cortisol levels?  Did you see an endocrinologist? The endocrine system has a large effect on hormones and how you feel both physically and mentally.  She really liked the website http://www.stopthethyroidmadness.com/ as it had patient feedback to treatment and offered a lot of information about the endocrine system.  She felt better prepared for her appointment with the endocrinologist and it went well.  I am not a doctor but I do know that this can largely impact how you are feeling.  When I have the sensation of gravity pulling me to the ground it is usually due to low BP.  I feel off balance as well at times. Have the doctors considered testing for a mast cell disorder? A lot of things can throw us out of whack. It can be really frustrating dealing with the doctors and trying to figure out what's going on.  I'm spacey so I hope I am making sense. 

Thanks for your suggestions. I did have thyroid antibodies present -- however, they were in range. I've read some people suggest that any antibodies = Hashimoto's, so maybe it's a possibility. A thyroid ultrasound was clear.

I did see an endo who said my symptoms look like hypothyroidism but that my numbers weren't bad enough.

Not sure how they would test for mast cell disorders?

I kinda feel like my whole body is broken. 

[out****spot]

12 hours ago, SarahA33 said:

Hi and welcome to the forum,

I really hope things start to improve for you soon and am sorry that you are going through a difficult time right now.   You mentioned feeling adrenaline rushes, this is a typical complaint amongst POTS patients. This can be caused by a # of things -If you have low blood volume or are dehydrated. Also, if your experiencing low blood pressure's or fluctuations in pressure's, as well as having a hyperadrenergic component of POTS. Changes in Blood sugar levels can also cause adrenaline surges.  Measuring the catecholamine levels(noradrenaline, epinephrine, dopamine) in your blood, through a blood test done in a lab (sitting quietly for 30 minutes, then standing 10 min apart) and also some doctors will do this additionally during a tilt table to  correlate w/ your symptoms. Mine were quite elevated and the addition of clonidine and beta blocker, which counter act adrenaline has helped immensely.

I think your on the right track with pushing for a consult w/ the POTS specialist, if for whatever reason you need to access another Dysautonomia specialist in your area in the future, here is our physician list: http://www.dinet.org/index.php/physician-list  Sending positive thoughts and wishing you the best - Sarah

Thanks. I put in a request to see the POTS neurologist. They said they'd ask but no guarantees.

It's hard to know if my blood pressure is going low. I tried to describe to the psychiatrist that standing feels like a strain -- my legs become heavy, adrenaline pumps out, my ears start to ring, and it's like this alarm starts going off internally which forces me to sit again. Of course, they're like "what are you afraid of happening if you stand?", passing it off as anxiety. 

[yogini]

Mental illness and stress do not cause POTS.  If you do have POTS or dysautonomia it is a physical condition.  POTS can affect your ability to deal with stimulation. You may have something overarching which is causing both the POTS and the mental illness. I encourage you to persist and not give up. If you find the right treatment, you could feel a LOT better.

[Amalia01]

outdamspot,

I was spacey when I responded but meant to include that you could have co-existing conditions (meaning POTS as well as something else).  The Sarah and Yogi had some nice feedback. I hope you get to see the POTS specialist and figure out what is causing this.