Spouse with Addison's disease and possibly bipolar

I would like to start by saying that this is not the first thread I was hoping to post but life has brought me to this point and I really could use some honest input. I have searched through many support groups and chats only to find that responses are few and far between so I'm hoping that someone here may be or has been in a similar situation.

My husband and I have been married for 15 years. I knew when we began dating that he was diagnosed with Schmidt's syndrome when he was 14, which, in his case is a combination of Addison's disease, type 1 diabetes and Celiac disease. I had a couple of years prior been trained as an EMT so things like administering an emergency dose of steroids in case of injury or handling the occasional low blood sugar was not a problem.

Fast forward 15 years, I sit on the board of a local non - profit art gallery and my husband is the musician in residence there. After a recent meeting some things came up that had something to do with a complaint about someone bringing their own beer to a show and when I arrived home my husband asked about the meeting and when I told him what what said he, I'll use the scientific term here, flipped out. It went something like f.u. followed by letting me know that I'm pathetic, attacking my enjoyment of ATS and how he has disliked me for sometime and was not honest about his feelings and then running screaming out the door saying he would never speak to me again. When he was finally willing to answer his phone I found out that he had wandered into the woods and planned to camp out there. An hour later he called to ask if I would come and get him as he was ready to come home and wanted to talk. The talk lasted about fifteen minutes before devolving into him screaming and rolling around on the floor.

This was a week ago and we are now separated (his choice initially) and he was very excited to have his, I'm a lone wolf adventure. He now has asked to come home even though he reverts to these kinds of behaviors when he spends any amount of time with me.

This has happened at least once a year since we have known each other and this past year it has happened three times so far. We have gone to see a marriage councilor for the first time and I'm hoping he will consent to see a psychiatrist even though I have mixed feelings on that front.

Lastly I wanted to add that other than this he can be and is the most amazing person I have ever known, and to be honest I'm not sure what I'm asking here other than I really needed to vent a little and I have grown to appreciate the openness and thoughtfulness shown by many of the members here. I am hoping someone has either personal experience with something like this or struggles with Addison's disease themselves.


Penny

You may want to check out Rife therapies with zappers for Addison's. They can really muddle the mind... I saw this first hand. A few electric treatments and it is possible to get someone who is not even bipolar...

Sorry to hear that. I don't really have any advice for you.

That is a lot of health issues. Having celiacs and hypoglycemia myself, my first thought was low blood sugar on top of a vitamin deficiency. I know that can really affect my mood and mental state. Is he taking vitamin supplements? When was the last time he had his vitamin levels checked?

Kokatsi,
Thank you for the information on Rife therapies. From what I understand, this therapy is used to reverse cellular malfunctions in a person who might other wise be healthy. my husbands adrenals are completely destroyed and I'm not sure help on that front can be had. Some people with Addison's have some adrenal function while my husband has none.

Ghost375,
Thank you for listening just the same.

Calstorm,
It really is a lot to deal with and I actually understand his anger to a degree. We just had a complete vitamin analysis and it looks great. We also looked at long term blood sugars and hormone levels. We are actually in very good shape for our ages ( I am 44 and he is 43 ) we are very active and we eat well. Low blood sugars are few and far between but he will on occasion allow a low blood sugar to happen if he feels my attention is elsewhere for to long. This is one of the reasons I see whats going on as something entirely different.

Penny

Since low blood sugar and vitamin deficiency has been ruled out, I am at a loss. It certainly can't be easy for you not knowing what is going on. Hopefully someone here can help, or at least point you in the right direction.

Originally posted by pennylemon

We have gone to see a marriage councilor for the first time and I'm hoping he will consent to see a psychiatrist even though I have mixed feelings on that front.

Psychiatrist ultimatum. You and he could have your lives back and perhaps even better than ever with a decision to go to a psychiatrist. There are not only medications that could be a life-changer but the actual therapy could help him gain clarity, as well.

Seriously, your happiness (and his) is too important to throw away because of some base apprehensions you may have about the psychiatric profession.

Originally posted by Cuervo

Originally posted by pennylemon

We have gone to see a marriage councilor for the first time and I'm hoping he will consent to see a psychiatrist even though I have mixed feelings on that front.

Psychiatrist ultimatum. You and he could have your lives back and perhaps even better than ever with a decision to go to a psychiatrist. There are not only medications that could be a life-changer but the actual therapy could help him gain clarity, as well.

Seriously, your happiness (and his) is too important to throw away because of some base apprehensions you may have about the psychiatric profession.

Thank you for the post Cuervo,

I would not consider mixed feelings base apprehensions. I personally have seen my share of psychiatrists. The hesitation is his. I would add that the complexities of Schmidt's syndrome are not fully understood and especially the medications involved with Addison's disease. Even endocrinologists do not fully understand the effects of long term steroid use on a persons mind.

Penny

reply to post by calstorm


Thank you for the kind ear Calstorm. I realize that a newcomers crumbling marriage is low on the priority list given the more serious discussions here and rightly so, IMO. It does help to get out of my own head without resorting to sharing with family, mine or his. I am still hoping that there is someone out there that has personal experience with Addison' s and psychiatric medications or methods that may have worked for them.

My goal truthfully is that we both have what we need and if that means stepping away then that is what I have to do. Letting go or holding tighter, the answer to that has yet to be realized. Thank you again

Penny

a reply to: pennylemon

I've got Addisons Disease too. The medication I take can sometimes cause my temper to become out of control. When I first was diagnosed, my doctor wasn't very familiar with the treatment for the disease and left me on an extremely high dosage of steroids for 3 months. I was completely out of control with my mood swings, high highs and low lows. I also had so much energy I litteraly ran up and down the stairs all day. I eventually got the medication issues straightened out but sometimes I have to double a dose if I'm feeling under the weather, as I'm sure you're aware its to avert an addisons crisis and high doses of steroids turn people in to monsters.

If he's been Addisonian for awhile, his medication shouldn't be the issue, I don't think anyway. What I've noticed is that the more time that passes the higher my dose needs to be. I would seek a second opinion and ask them to do a lab test for the Addisons Disease, in case it is the medication causing his issues. (I take hydrocortisone and florinef)

I hope everything has worked out for you, Addison's disease (well autoimmune diseases in general) are not fun to deal with. They tend to come in three's along with other conditions. I've got major anxiety issues and wonder their relation to my Addison's disease, I didn't start having anxiety and panic attacks until about 5 years after diagnosis.

a reply to: Jennyfrenzy

What a surprise to find this old thread in my feed, and a fellow crazy cat lady at that. I was going to say pleasantly surprised but I know how difficult living with the daily struggles of Addisons can be.

The sad truth is, so many doctors and endocrinologists really have very little understanding of what it's like to live with the day to day of it. Unfortunately as far as the general medical community is concerned, Addisons is essentially cured. Just take your Hydrocortisone and Florinef every day and stress doses as needed, Wa La. interestingly when it comes to mental health neither of these meds set off alarm bells. However, as one of his first doctors inside the county mental health unit said, if he had been taking Prednisone for the last 25 years, they would be very concerned. What they failed to realize is that these are essentially the same things. I have questioned many times the connection here and yet as long as the tests show that he is not in crisis, Addisons is not seen as having any impact whatsoever on whats happening now. The question sticks with me though.

It pains me Jenny to see you use the word monster and I wish I could give you a hug right now. My husband has described himself this way many many times and it's now been over a year that he's been away. As far as he and his bevy of Doctors are concerned this is the only way to keep the both of us safe.

He has since been diagnosed with Narcissistic Personality Disorder and Bi-polar with psychosis. As far as his doctors are concerned, he should never come home and I need find a way to accept this. It breaks my heart.

Penny

a reply to: pennylemon

You're so sweet Penny! Thanks for your kind words

I'm sorry that you have to deal with this and all the really difficult life altering decisions that come from it, breaks my heart too.

Your thread really got me thinking about the possible connection between long term steroid use and mental health issues. My paternal aunt also has Addison's, for probably 35-40 years now. She deals with mental health issues, also anxiety along with depression (wouldn't be surprised if their were some other issues going on with her too.) My issues with anxiety and depression never started happening until about 5 years of taking steroids every single day.

I found an interesting article: The Neuropsychiatric Aspect of Addison’s Disease

Apparently Neuropsychiatric symptoms are often the initial presentation of Addison's, interesting.

The neuropsychiatric aspect of this condition is not fully understood and not much has been documented about it in the English literature.

This part was very interesting, it's concerning steroids (emphasis added by me):

Although many of the psychological side effects from corticosteroid use are probably of little clinical significance, some of these side effects (e.g., mood alterations, hyperactivity, insomnia, and psychosis) have been described in approximately five percent of corticosteroid-treated patients.

Some case reports on corticosteroid use have even described suicide attempts.15,16 The theory that a past history of psychiatric illness is a risk factor for corticosteroid-induced psychosis is controversial, though according to a review by Patten and Neutel it does not appear to impose a significant risk factor.

So they don't really know, it makes me worried about a connection between long term steroid use and it's connection to my anxiety.

I've got an appointment with my endo on 10/2. Pretty sure my steroid dosage is too low, every day I get an "addisons stomach ache" (that's what my aunt calls them, lol) I'm going to ask her about her thoughts on a connection between long term steroid use and mental health and let you know what she says.

originally posted by: Jennyfrenzy
My issues with anxiety and depression never started happening until about 5 years of taking steroids every single day.

Mine started when the autoimmune (sjogrens) started. I'm on Plaquinel for the sjogrens which helps some people with depression (because it takes the edge off the Sjogrens symptoms) and others say it makes them worse. Mine is the same .. not helped and not worse ... because of the meds. I was only on the steroids for the first few months after diagnosis so I couldn't say if they helped or hurt my depression ...

a reply to: Jennyfrenzy

My apologies for leaving the thread hanging. Life jumped out at me when I was least expecting it and took me down for a while.

Before I go further down this rabbit hole I wanted to let you guys now that I have spoken with my husband about posting here and he has given permission to speak openly. I also wanted to thank you for sharing Jenny and Flyersfan.

When he and I met it had been 14 years since his diagnoses. Interestingly his first institutionalization was 4 or 5 years later at age 18/19. At that time no mention or possible connection to the complexities of Addisons was made and even now only one doctor has mentioned the risks of long term steroid use and Only in reference to Prednisone. Much like your Aunt he has now been taking hydrocortisone and florinef (essentially Prednisone) every day for thirty years.

Even now the connection touched upon in your link above is dismissed out of hand, even though we do know that there is a connection between physical trauma, by this I speak of the illnesses that often times brings about endocrine system failures, and mental health. I can't help but think that if we could begin to take a more holistic look at treatments early on , the effects of these stresses long term might be lessened.

To be clear here I realize that my husbands particular mental state cannot be attributed to Addisons alone. The first diagnoses of Bi-polar with severe psychosis does mirror many of the symptoms that come with long term Addisonian crisis, as you already know. His endo says no they are not at all related but, this Bi-polar diagnoses came after psychiatric observation and repeated behaviors that we know are also experienced in crisis. As you know behavioral changes, severe depression, mania, hallucinations just to name a few are known.

The second diagnoses of Narcissistic personality disorder is often times attributed to early childhood traumas. Which as we know also can be the cause of Addisons. In my husbands case he became ill with an unknown wasting disease that went untreated for almost two years. His parents, to this day say that they didn't know and thought he was just being dramatic. They still joke that they used make fun, telling people he had a rare tropical disease. He was left alone and his mother has said to me, more than once, that they just thought he was a weak child and was left alone for days. By the time he was diagnosed at 14, he weighed 45 pounds.

I try so hard not to be an angry person but typing this even now I feel it wash over me. His doctors now say that I need to run and leave him to his delusions as it is not healthy for me to engage to deeply with him. That he cannot be helped. It's this very thing that I cannot seem to do, to leave him again alone. Perhaps I am misguided in that I'm having a very hard time just turning away, although it's likely he will never return home.

My thoughts here turn to others who struggle and my hope is that someone can start to take a good hard look and perhaps immediate neurological support should be an equal part of any treatment plan early on.


Penny

a reply to: FlyersFan

Thank you for sharing Flyersfan. I am curious whether or not the depression is treated as a separate issue or in your case is it acknowledged to be associated with the diagnoses of Sjogrens ? Because here again there seems to be a known but little studied link.

Psychiatric disorders in primary Sjögren's syndrome constitute a possible clinical reality that each practitioner must be able to recognize and treat. In this article, two case reports of mental disorder as clinical presentation of primary Sjögren's syndrome are presented, suggesting that psychiatric manifestations in primary Sjögren's syndrome can occur not only during its longitudinal course, but also at the onset of the autoimmune syndrome.

www.ncbi.nlm.nih.gov...

Penny