I'm having multiple odd episodes that are keeping me undiagnosed. Help

Posted by johnwes5819 @johnwes5819, Mar 10, 2019

Hello,

I posted before in another group in its entirety but I think it's too broad and there could be a multitude of theories and explanations. So I'm going to break my story down into my most bothersome episodic symptoms. To start, everything on the surface looks like panic disorder or anxiety. However, my different episodes seem to be helping each other keep me feeling frantic more days than not so on the surface it looks like anxiety. I've had lots of lab work testing including thyroid, Lyme, sleep apnea home test, brain MRI, spine MRI, abdominal ct scan, and way too many doctor visits with no answer, but they do agree on one thing. The symptoms are weird and seem to be more than just anxiety. There are little bits here and there but unfortunately not enough to go on.

Keep in mind these episodes aren't all going on at the same time but they're not giving me any recovery time and feel like i'm sinking further down the hole. It's like fighting 5 bullies one at a time and losing. Just as you feel like you can get up another bully hops in.

Episode 1: After waking up with head pressure, teeth chattering, shivering, lower back pain, and sweating. Oral temperature is ALWAYS between 93.8 F and 94.8 during these episodes. Also, every day is constant cold hands and feet that never happened until all of these episodes started.

Episode 2: Brain fog, head pressure that feels like you're being pushed down when standing (like when you've had one too many drinks), usually later in the day when that feeling wears off, I'll have adrenaline body tingling, uncontrollable thoughts of self-harm and head chatter. (Not dwelling on things or worried about things, it's just the mind doing what it does and I have no control.) Also, my eye will twitch like crazy before and during these.

Episode 3: When standing for a long period of time, like cooking or washing dishes, and sweating starts to happen my heart rate increases and get extremely dizzy and feels like I'm being physically pulled down.

Episode 4: An overly excited feeling, almost like needing to yell or run to get adrenaline out, Heart rate is low.

Episode 5. Sharp colon pain, yellow stools (frequently), stools that look sickly or unhealthy, and constipation more often than not. I had a colonoscopy recently and I was told everything looks good.

I've tried SSRI's and benzodiazepines and they don't stop these episodes from occurring. I've tried strict diets and those don't help.

If you have any thought about even one of these episodes please don't be shy to comment. Thank you so much for taking the time to read.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Yes, I agree, because first of all, I have learned that the body seldom has just one problem to deal with since every part of the body works together with every other part, or it is supposed to happen this way. We are also learning that diabetes affects the eyes, the ears, the mind, and God knows what else during the course of our lives, so we need to concentrate on prevention of future illnesses and decline if we are to live a long life. As I watched my husband live in denial of his bad health and refuse to cooperate in better care, I saw the destruction slowly take place. When he started having bleeding episodes which put him in the hospital four times without good progress, I knew in February that he would not be alive for Christmas, even though the doctors were telling me nothing because he wouldn't sign a paper allowing me to be informed. There is a problem with the HIPPA law in this regard. There is so much we can do for ourselves to delay or prevent these horrible illnesses to our body, if we join together and believe we can do better. Cookies no longer make me happy.
Good health does! And I get much satisfaction in joining with others for support and education. We are a team. Dorisena

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I personally believe that an excellent diet with lots of fresh vegetables and fruit helps the body with the "feel good" feeling, and I believe that you should stay on a healthy diet for you regardless. There may minor adjustments for your body's personal needs, such as solving constipation or paying attention to dairy sensitivities, or allergies. I believe that after you have tried meds, without success, you should avoid most of them, except ones that your doctor thinks will prevent you from dying soon. I believe that you should try to spend much time with someone who cares about you and loves you, which was missing in my life for so many years. I believe that you should trust that some of these problems can be made better eventually. It is a process. It won't happen tomorrow.
But life and health can improve, even in old age. And don't forget that unhealthy stress should be made to disappear from our lives. But please, don't shoot the offender! Stay away. Dorisena

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Have your ever studied and understood the fight or flight response that the body can make in times of sudden stress? It also can happen at the dentist office if the dentist uses the wrong numbing medicines. It is what happens when a person at the scene of an accident lifts a car off a victim and saves a life. The body just responds to an emergency. When I have these sudden hot spells, it feels like an emergency and I have to step outside to cool down and calm down. I am not worried about it anymore because I don't pass out or anything. I march in place for cold feet and I wear socks to bed. I have had the problem for years, and blame it on a low metabolism and not enough exercise. The body needs more as you age, and that is a crazy thought. I'd rather be reading a book and sipping wine, but then I wouldn't stay awake to read. I find that colon problems come from not the right diet for me and stress. I have won that battle but I avoid a lot of people. I tried some of those pills the doctor prescribed and dropped every one of them as they made me feel like I need to go to the emergency room. I stopped the Xanax on my own three weeks before my husband's death because after a good cry, I realized the end was coming and I would be free from most of my stress. The funeral and luncheon afterward went fine. Sometimes you just have to admit where the problem is coming from and get opportunity to let go and move on. Sounds callous but it saved my life. I am not ashamed to admit it. Dorisena

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Years ago when I admitted my happy mood at being a widow, my new doctor looked at me and said "sometimes ya just gotta do what ya gotta do!" It made my day and I think of it often these many years. Dorisena

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I don't think there is any direct association between diabetes and cancer. It could be that people on a high carb diet who are obese...(and diabetic) are more inclined to get cancer. But not being diabetic, I don't think.

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My husband was diagnosed with diabetes and prostate cancer at the same time. He hadn't been to the doctor in years. He laughed. He had some treatment for the prostate but no surgery. He quit the program. The cancer came back as a tumor in his spine. He told everyone he injured his back and was having therapy. He was paralyzed before dying. I have survived two surgeries for cancer, breast and thyroid. I have type 2 diabetes. You can imagine that I am interested in any research and development because we know that diabetes does damage to the eyes, hearing, brain, liver, and God know what else.
A few doctors call Alzheimer's disease Diabetes III because of the relationship between dementia from diabetes damage and the actual Alzheimer/s. Also loss of taste and smell is associated with dementia of some kind and even hoarding is considered by some a precursor of Alzheimer/s. We need to study.
Then there is the issue of antioxidents which are known to help lower the risk. . We are talking carbs, of course. More study is need. Dorisena

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@afrobin

I don't think there is any direct association between diabetes and cancer. It could be that people on a high carb diet who are obese...(and diabetic) are more inclined to get cancer. But not being diabetic, I don't think.

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@afrobin Certainly there may be co-founding explanations for the link between type 2 diabetes and cancer but, if you look at the peer reviewed research, it is established that type 2 diabetes increases the risk of several cancers - and likely there is direct metabolic connection.Type 2 diabetes increases the risk for endometrial, liver, and pancreatic cancers ( may double the risk). It also increases the risk of bladder, breast, non-Hodgkin lymphoma and colorectal cancer.

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@afrobin

Do you have a doctor who is prepared to test you for EVERYTHING? Brain scans, hormone issues such as thyroid and adrenal. Could it be Addison's disease? https://www.mayoclinic.org/diseases-conditions/addisons-disease/symptoms-causes/syc-20350293 Leave no stone unturned until every organ in your body has been examined. I presume you live in the US so I hope you have insurance. Here in Canada, it would all be free. Let us know how this mysterious condition is diagnosed because there IS something not right. And it could be a simple fix. Take care!

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@afrobin Yes, I live in the US. I have symptoms of Addison's as well as Cushing's which is odd because they're opposite each other. I'm definitely doing my best to work my doctor to have extensive testing. Hopefully, my next set of tests will find something.

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@dorisena

My husband was diagnosed with diabetes and prostate cancer at the same time. He hadn't been to the doctor in years. He laughed. He had some treatment for the prostate but no surgery. He quit the program. The cancer came back as a tumor in his spine. He told everyone he injured his back and was having therapy. He was paralyzed before dying. I have survived two surgeries for cancer, breast and thyroid. I have type 2 diabetes. You can imagine that I am interested in any research and development because we know that diabetes does damage to the eyes, hearing, brain, liver, and God know what else.
A few doctors call Alzheimer's disease Diabetes III because of the relationship between dementia from diabetes damage and the actual Alzheimer/s. Also loss of taste and smell is associated with dementia of some kind and even hoarding is considered by some a precursor of Alzheimer/s. We need to study.
Then there is the issue of antioxidents which are known to help lower the risk. . We are talking carbs, of course. More study is need. Dorisena

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@dorisena I'm sorry to hear about your husband. That is really rough especially dealing with multiple things. I also agree with @lisalucier that the cancer / diabetes conversation would be a great discussion topic in the Connect Diabetes & Endocrine System group, https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/

The last 7 or so responses notified me and I get excited to hear possible theories or answers about what could be going on with my issues because I'm severely distraught looking for answers, then I see it's another conversation.

Plus it helps keep things on topic. 🙂

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@johnwes5819

@afrobin Yes, I live in the US. I have symptoms of Addison's as well as Cushing's which is odd because they're opposite each other. I'm definitely doing my best to work my doctor to have extensive testing. Hopefully, my next set of tests will find something.

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Could it be that your Addison's and Cushings are not well treated? You do see an endocrinologist regularly, right? It seems to me that he or she needs to work on your case in depth, taking it all very seriously. In complex cases like yours, it sounds like you need to be admitted to hospital where they can run all the tests, draw blood etc... at once and have you there in one spot so you can be seen by a variety of specialists, getting everyone on board at once.
Take a look at your medications on line and check out the side effects to be sure they aren't causing some of your symptoms...which they undoubtedly are. Drugs come with plenty of side effects! Often the cure is worse than the disease. The squeaky wheel gets the grease.

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