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

Posted by johnwes5819 @johnwes5819, Sun, Mar 10 3:31pm

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.

@barbbie

I prefer DOs to MDs. Most of my doctors are DOs. I find they have a better outlook on treating people with as little meds as possible. With my long allergy list to meds I find DOs far more sensitive to my needs. The last MD I saw for a procedure wanted to give me an antibiotic that produced anaphylaxis in me. He said it wasn't a true allergy, just a side effect. I refused to take it and he is no longer a doctor of mine. My PCP does OMM as part of my visit. He sees me for a half hour. He cares about me physically, mentally, and spiritually. He also happens to be the same age as my older son! My pain management doctor , also the same age as my older son and a DO, as did my PCP both asked me to be a patient of theirs – one through seeing me in an osteopathic clinic for osteopathic manipulative medicine and the other by a request from an older pain management doctor who couldn't deal with my allergies. They and my other DOs show more interest in the person they are treating than MDs who are looking for meds to get them out of the office. My husband's sleep doctor is a DO and the other day when my husband exhibited a strange behavior that has become normal to him, he has some form of dementia, the doctor pursued by asking relevant questions and asked me to get his other doctors to send him reports. He also expressed compassion for my situation. DOs aren't people who have been rejected by med schools as I use to hear. They just have, in my opinion, a deeper desire to help people in a different way than MDs. Osteopathy has been around for over a century.

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@barbbie As I stated before, I think there are great MDs and great DOs, and also some in each line who are much less than great. I think my PCP, an MD, does care about me physically and mentally, I just have other reservations about him since he did not diagnose me when I was sick. If I decided to change doctors I know I would definitely consider a DO, there are some in my area who are very highly regarded. One of our closest friends is an MD and he tends to not think as highly of DOs as he does of MDs but I think that's a personal prejudice.

I believe it is an old prejudice against them that is slowly going away, that makes people regard DOs less highly than they regard MDs. Bottom line, you need to see a doctor you are confident of and comfortable with, be it an MD or a DO.
JK

Liked by capausz

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@slynnb

@afrobin You apparently Googled "naltrexone" but did not understand that LDN is what I believe was being mentioned on this page. .. Yes, LDN ( Low Dose Naltrexone) involves the same drug used to treat addiction but it has different effects and USES in very, very small amounts – SEPARATE FROM AND NOT RELATED TO ADDICTION. That's why it is used to treat autoimmune diseases and, sometimes, fibromyalgia. It's also used to treat several dermatological conditions and other conditions. I have no opinion on whether it is effectivebut it is being used by certain doctors and is being researched and has been for over 20 years ( you can find research papers in the National Library of Medicine).

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Yes low dose naltrexone is not used for drug addiction but you cannot use opiates with it because of that. For drug addiction it’s used in much much higher doses even injections. But low dose like 1.5 to 4.5mgs is used for autoimmune conditions and inflammatory issues. I think how it was discovered was when it was used for addicts who were hiv. It was noticed that the effects were helpful to the disease because it helps the immune system.

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I go to a naturopathic doctor for any issues; the most challenging being recurrent UTIs. She is a godsend. There are not many naturopathic doctors in Quebec where I live. This one has a Masters of Science degree (3 years in university) and advanced training in naturopathy. This is not a person who has taken a 3 month, on line course as some do to become naturopaths…
She sent my blood for intolerance/allergy testing and the results surprised me. I knew already that dairy sent me into paroxysms of coughing and asthma so the result that I am dairy protein intolerant did not surprise me. Some other obscure results were however revealing such as an intolerance/allergy…to one particular nut, sunflower seeds, barley and a number of other foods. One thing I am relieved to know is that I am NOT gluten intolerant. My asthmatic reaction to bread was because many breads contain milk which I had never checked ! I now know exactly what to avoid and I read ingredients on all food products.
I now have a stool test to do.
I prefer lifestyle approaches rather than taking drugs…with all their side effects. Just watch an ad on TV for drugs and see all the warning signs…including cancer and death. No thank you! I will lose weight, eat even more vegetables, avoid foods I am intolerant to, drink more water, get more exercise, avoid sugar and stimulants etc..

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@afrobin Thank you for pointing this out about naturopath's. Anyone interested in going this direction please do your homework!!! There are many charlatans out there!!!

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@barbbie

I prefer DOs to MDs. Most of my doctors are DOs. I find they have a better outlook on treating people with as little meds as possible. With my long allergy list to meds I find DOs far more sensitive to my needs. The last MD I saw for a procedure wanted to give me an antibiotic that produced anaphylaxis in me. He said it wasn't a true allergy, just a side effect. I refused to take it and he is no longer a doctor of mine. My PCP does OMM as part of my visit. He sees me for a half hour. He cares about me physically, mentally, and spiritually. He also happens to be the same age as my older son! My pain management doctor , also the same age as my older son and a DO, as did my PCP both asked me to be a patient of theirs – one through seeing me in an osteopathic clinic for osteopathic manipulative medicine and the other by a request from an older pain management doctor who couldn't deal with my allergies. They and my other DOs show more interest in the person they are treating than MDs who are looking for meds to get them out of the office. My husband's sleep doctor is a DO and the other day when my husband exhibited a strange behavior that has become normal to him, he has some form of dementia, the doctor pursued by asking relevant questions and asked me to get his other doctors to send him reports. He also expressed compassion for my situation. DOs aren't people who have been rejected by med schools as I use to hear. They just have, in my opinion, a deeper desire to help people in a different way than MDs. Osteopathy has been around for over a century.

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@barbbie I also prefer DO's to MD's. I appreciate the approach of everything is connected and the best way to approach it, rather than treating the symptom. I've been through so many MD's but also DO's. Some of the DO's do the schooling but you can tell they don't care, or at least stopped caring. Glad to hear about your husband's sleep doctor. The world needs more doctors like that.

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I am no doctor but I am thinking about my older sister who recently died. She lived for years with panic disorder and although she was very bright and capable, and watched her diet carefully, she never got relief. She would not follow directions from mental health professionals and did not take her meds correctly. However she lived into her late nineties with daily panic attacks and had hospice care at the end. Family help did not work out well. She lived a traumatic childhood and I blamed her problems on anxiety from a bad start in life that she could never work her way out of, despite a successful career in office management, sales, and music. She was talented and beautiful but did not bond with people well.
She had one unsuccessful marriage and one successful marriage until the second husband died. I have no shame in seeking help with counselors and psychiatrists, and only had one panic attack in my life before I decided that was unacceptable and I overcame it. I think it is important to seek mental health care even when the counselor does not provide helpful solutions. Physical examinations are not enough. The head is attached to the body and is not a separate unit. Treat everything together as a whole. Dorisena

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@afrobin

I go to a naturopathic doctor for any issues; the most challenging being recurrent UTIs. She is a godsend. There are not many naturopathic doctors in Quebec where I live. This one has a Masters of Science degree (3 years in university) and advanced training in naturopathy. This is not a person who has taken a 3 month, on line course as some do to become naturopaths…
She sent my blood for intolerance/allergy testing and the results surprised me. I knew already that dairy sent me into paroxysms of coughing and asthma so the result that I am dairy protein intolerant did not surprise me. Some other obscure results were however revealing such as an intolerance/allergy…to one particular nut, sunflower seeds, barley and a number of other foods. One thing I am relieved to know is that I am NOT gluten intolerant. My asthmatic reaction to bread was because many breads contain milk which I had never checked ! I now know exactly what to avoid and I read ingredients on all food products.
I now have a stool test to do.
I prefer lifestyle approaches rather than taking drugs…with all their side effects. Just watch an ad on TV for drugs and see all the warning signs…including cancer and death. No thank you! I will lose weight, eat even more vegetables, avoid foods I am intolerant to, drink more water, get more exercise, avoid sugar and stimulants etc..

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Yes, when I gave up sugar and sweets after cancer surgery, I no longer have UTI's. And so far, no more cancer, as sugar feeds the cancer cells first. Dorisena

Liked by sirgalahad

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@dorisena

Yes, when I gave up sugar and sweets after cancer surgery, I no longer have UTI's. And so far, no more cancer, as sugar feeds the cancer cells first. Dorisena

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Hi, @dorisena – just wanted to point out a Mayo Clinic article on causes of cancer https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-causes/art-20044714 that might be of interest to you. It offers this information on a cancer causation myth related to sugar:

Myth: People with cancer shouldn't eat sugar, since it can cause cancer to grow faster.

Fact: Sugar doesn't make cancer grow faster. All cells, including cancer cells, depend on blood sugar (glucose) for energy. But giving more sugar to cancer cells doesn't speed their growth. Likewise, depriving cancer cells of sugar doesn't slow their growth.

This misconception may be based in part on a misunderstanding of positron emission tomography (PET) scans, which use a small amount of radioactive tracer — typically a form of glucose. All tissues in your body absorb some of this tracer, but tissues that are using more energy — including cancer cells — absorb greater amounts. For this reason, some people have concluded that cancer cells grow faster on sugar. But this isn't true.

However, there is some evidence that consuming large amounts of sugar is associated with an increased risk of certain cancers, including esophageal cancer. It can also lead to weight gain and increase the risk of obesity and diabetes, which may increase the risk of cancer.

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Thank you for the information. What I am really interested in is what increases the risk of cancer and whether or not diabetes makes the risk higher, because my husband did not take care of his diabetes and did not stay on the prescribed regimen and his cancer metasticized into a tumor on the spine which killed him in short order. I have been taught that there is a relationship between fat in the breasts and cancer, which I had and survived, so I am more careful about fat in my diet. I prefer olive oil and no longer raise hogs on the farm, so the lard is gone out of my life. I did not believe that sugar speeds cancer cell growth.
I thought it went to the cancer cells first, and neglected the good cells. Of course, I will continue searching for the latest information. I certainly am happy avoiding sugar and sweets, however, it is difficult to convince my friends of my content. I want to feel as though I am doing everything I can to avoid recurring cancer if possible, or have it return at a very old age and die quickly. I prefer not to die being run over by a truck. My husband ran over my leg with a disk and I survived that without losing my leg, so I tend to be careful about many risks. I am glad to hear that obesity is associated with increased risk of cancer, because I believe that dealing with his overeating disorder could have helped prevent his early death. His awful death was a big lesson for me.
What I read was that sugar 'feeds cancer cells" and that was a turn off for me. Dorisena

Liked by capausz

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as I recommended I believe you need to review your meds with mayo or ucla or john Hopkins and also see a immuniologist in regards to your extreme food allergies in area off grains and plants and also gut specialist to review your gut and gut walls and intestines and villi in the walls of stomach . I would encourage seeing a renal specialist for your kidneys and the metabolites and hypertensive condition and levels of fatty acids and liver and the link to this and possible fatty acid

Liked by sirgalahad

REPLY
@lisalucier

Hi, @dorisena – just wanted to point out a Mayo Clinic article on causes of cancer https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-causes/art-20044714 that might be of interest to you. It offers this information on a cancer causation myth related to sugar:

Myth: People with cancer shouldn't eat sugar, since it can cause cancer to grow faster.

Fact: Sugar doesn't make cancer grow faster. All cells, including cancer cells, depend on blood sugar (glucose) for energy. But giving more sugar to cancer cells doesn't speed their growth. Likewise, depriving cancer cells of sugar doesn't slow their growth.

This misconception may be based in part on a misunderstanding of positron emission tomography (PET) scans, which use a small amount of radioactive tracer — typically a form of glucose. All tissues in your body absorb some of this tracer, but tissues that are using more energy — including cancer cells — absorb greater amounts. For this reason, some people have concluded that cancer cells grow faster on sugar. But this isn't true.

However, there is some evidence that consuming large amounts of sugar is associated with an increased risk of certain cancers, including esophageal cancer. It can also lead to weight gain and increase the risk of obesity and diabetes, which may increase the risk of cancer.

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My 55 year old friend died of metastatic breast cancer that went to the brain. Her oncologist told her not to eat any sugar because it feeds cancer. She complied and perhaps lived longer…but sadly did eventually die…
This TED Talk by Dr William Li on Angiogenesis, Can We Starve Cancer is very informative concerning the relationship between what we eat and cancer. https://www.ted.com/talks/william_li?language=en

Liked by sirgalahad

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I say look to the medications you are taking. Look up each one and see which could cause your symptoms. Too often the cure is worse than the disease…
Case in point: I have been having daily coughing fits for 18 months….since I started on a drug to lower blood pressure. I finally looked up the side effects and there it is: coughing!

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@afrobin

My 55 year old friend died of metastatic breast cancer that went to the brain. Her oncologist told her not to eat any sugar because it feeds cancer. She complied and perhaps lived longer…but sadly did eventually die…
This TED Talk by Dr William Li on Angiogenesis, Can We Starve Cancer is very informative concerning the relationship between what we eat and cancer. https://www.ted.com/talks/william_li?language=en

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the only way to starve a cancer or tumour mass is to cut off the blood supply and insert directly into the mass stuff to kill it

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@afrobin

I say look to the medications you are taking. Look up each one and see which could cause your symptoms. Too often the cure is worse than the disease…
Case in point: I have been having daily coughing fits for 18 months….since I started on a drug to lower blood pressure. I finally looked up the side effects and there it is: coughing!

Jump to this post

@afrobin I was on the same medication a number of years ago — lisinopril? I called my PCP and told her I was coughing a lot and she immediately said it was from that drug and switched me. Apparently that is a very common side-effect of that drug. My sister takes it though and has no problem at all.
JK

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@contentandwell

@afrobin I was on the same medication a number of years ago — lisinopril? I called my PCP and told her I was coughing a lot and she immediately said it was from that drug and switched me. Apparently that is a very common side-effect of that drug. My sister takes it though and has no problem at all.
JK

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@contentandwell I just noticed I have been coughing, mainly in the middle of the night. I am taking lisinopril. I thought it was something else. I take a cough drop. Maybe I should have my MD try something else? If you cough should you change? I’m going to check with my MD to see if I need to change. Thanks

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