1. < Chronic Pain

Long term headaches and stomachaches

Posted by camicorn85 @camicorn85, Sep 13, 2020

For the past 10+ years I wake up with a headache every single day. I have been to several different doctors for my headaches, had mris, cat scans, I was prescribed a med from my neuro that worked short term But no longer does. No one can figure out why I have headaches.
I have pretty significant neck pain and stiffness everyday as well.
I’ve tried new pillows and adjusting my bed, seeing a chiropractor and working on bettering my posture, to see if my neck pain was causing the headaches no relief.
I’ve tried allergy meds sinus meds. Literally everything I can think of.
I have so many different symptoms throughout my body that when I take my list in to doctors they pick and choose what they want to help, but I keep getting negative results everywhere I go.
Was referred to a cardiologist for skipping heartbeats and he said I’m having PVC’s 10% of the time and to not worry but I FEEL these and sometimes they stop me in my tracks for a couple seconds or sometimes I have to take a big breath or cough to feel right again.
I have bile reflux and ibs and have to really watch what I eat, I’m in constant pain and I don’t know where to go from here or what to do. I’ve seen every dr I can think of. Because of how much OTC meds I take to get some relief, I have caused ulcers in my stomach and my stomach lining is inflamed. I’ve had 3 colonoscopies and 2 endoscopies.
Here’s a shortened list of my symptoms, I just don’t where to turn or what to do. I’m so miserable I have very low quality of life. I have a husband and three teens that deserve a better feeling mother.
Please help if you can!
Headaches everyday all day
Shortness of breath
Tingling and numbness in toes fingers sometimes legs
Palpitations
Pain in chest
Tightness in chest
Fatigue
Weakness
Tired
Get out of breath easily from activity
Dizziness

Sweating off an on all day.
As soon as I wake up I get very hot and sweaty
Pain in ovaries mid month and randomly throughout cycle
Excessive discharge mid cycle for a few days
Breasts hurt significantly a few days to a week before period

Throbbing pain in joints randomly

Forgetfulness
Irregular speech
Mix up words
Sometimes can’t get my sentence out
Stress
Anxiety
Hair thinning
Muscle pain
Body ache
Neck pain

Ibs
Bile reflux
Lump in left breast
Hiatal hernia
Umbilical hernia

Ovarian cysts

Nauseous every morning
Ringing in left ear when lay head over to the right

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opi | @opi | Sep 13, 2020

Hi
My wife suffered fro many of your symptoms . All the tests were clean. So the Med in house (we live in a senior citizen housing) suggested to visit a Psicho-Greater to get his opinion. He suggested to try to diminish the pains by taking a small dose of CLONEX.It did a miracle.

REPLY
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 13, 2020

@camicorn85 Hello and welcome to Connect. I'm Rachel, and am glad you came to seek help. We aren't Drs. but, we have experience.

You have an overwhelming list here! I'm so very sorry this is happening to you. I relate as my troubles began with my kids being teens and several symptoms you've listed, I have had or have. I have been diagnosed with chronic intractable migraines, occipital neuralgia, cervical spondylosis, cervical bulges/herniation, Fuchs Dystrophy (corneal disease) and Small Fiber Peripheral Polyneuropathy. My neuropathy was a result of B12 deficiency. It was a slow, ongoing deficiency over a few years and unbeknownst to me was the culprit of my exhaustion, heart palpitations, sweating and inconsistent body temps, heavy breathing and lack of ability to function basically. I was around 46 and thought I was premenopausal but, no. It was all deficiency. This lead to Polyneuropathy which began in my hands and foot however, I had awful pain in my neck, shoulders, back, and head. Prior to a neuropathy diagnosis, I had numerous steroid injections, nerve blocks and radio frequency ablations to head, neck, back. I've also had ovarian cysts which were removed by laparoscopy, as well as appendix removal.

Like you, I have had a lot of trouble shooting to narrow things down. For me nothing was straight forward, it took over 4 years to unfold. This is an immense amount of pressure to live with, especially as a wife and mother. My heart greatly goes out to you.

I'd be interested to know your list of medications and supplements. I may be able to recommend migraine treatments. Meds, unfortunately can cause more grief. It ends up being cause and effect and if the medication offers more than its offset. My migraines are genetic and it's as simple as that.

Have you had genetic testing, extensive blood work (looking for everything under the sun), spinal tap to rule out autoimmune diseases?

REPLY
1 reply
camicorn85 | @camicorn85 | Sep 13, 2020
In reply to @rwinney "@camicorn85 Hello and welcome to Connect. I'm Rachel, and am glad you came to seek help...." + (show)
@rwinney

@camicorn85 Hello and welcome to Connect. I'm Rachel, and am glad you came to seek help. We aren't Drs. but, we have experience.

You have an overwhelming list here! I'm so very sorry this is happening to you. I relate as my troubles began with my kids being teens and several symptoms you've listed, I have had or have. I have been diagnosed with chronic intractable migraines, occipital neuralgia, cervical spondylosis, cervical bulges/herniation, Fuchs Dystrophy (corneal disease) and Small Fiber Peripheral Polyneuropathy. My neuropathy was a result of B12 deficiency. It was a slow, ongoing deficiency over a few years and unbeknownst to me was the culprit of my exhaustion, heart palpitations, sweating and inconsistent body temps, heavy breathing and lack of ability to function basically. I was around 46 and thought I was premenopausal but, no. It was all deficiency. This lead to Polyneuropathy which began in my hands and foot however, I had awful pain in my neck, shoulders, back, and head. Prior to a neuropathy diagnosis, I had numerous steroid injections, nerve blocks and radio frequency ablations to head, neck, back. I've also had ovarian cysts which were removed by laparoscopy, as well as appendix removal.

Like you, I have had a lot of trouble shooting to narrow things down. For me nothing was straight forward, it took over 4 years to unfold. This is an immense amount of pressure to live with, especially as a wife and mother. My heart greatly goes out to you.

I'd be interested to know your list of medications and supplements. I may be able to recommend migraine treatments. Meds, unfortunately can cause more grief. It ends up being cause and effect and if the medication offers more than its offset. My migraines are genetic and it's as simple as that.

Have you had genetic testing, extensive blood work (looking for everything under the sun), spinal tap to rule out autoimmune diseases?

Jump to this post

Hi and thank you for your response.
Over the last 10 or so years, I have had many blood tests, full thyroid panel, and tested some of my hormones. The endocrinologist I saw recently was not helpful and told me to seek therapy after saying he’d run a couple tests but he thinks they’ll come back negative, that was a bummer for sure, BUT I did start seeing a psychologist a few months ago and my mental is health is slightly better, but these symptoms consume me. The fight to find an answer consumes me and I think that is why my mental health has declined. I have been in a bad depression for the last 3 years.
I am currently not on any meds or supplements besides OTC pain relief.
One of my blood tests a few years ago showed a b12 deficiency so I went in for 8 weeks for shots and the blood test after that showed it was normal levels. I’ve also had one blood test more recent that showed normal levels.
I did not however feel any different after the shots.
I started taking vitamin b12 orally after that but still felt no improvement after months of taking it.
I’ve been to an ENT to rule that out as a cause to headaches.
My biggest problem is I get very discouraged after being told there’s nothing wrong, or that the test is negative so I try another avenue. It seems a bit crazy to hope for a positive test but at this point I want some answers.
I have migraines which I assume are genetic since both my parents have them and mine started around puberty. I only have 4-5 true migraines a year and I take maxalt for those, which normally knock them out within a day.
A few years ago I was prescribed Trokendi XR and that was a miracle drug, I for the first time in many years didn’t have a headache everyday, but due to insurance issues I had to stop it. I got that situation taken care of and a few months later I was back on it but this time it did nothing.
I wake up every morning and a lot of times a couple hours before I need to wake up, with a pounding headache that circles the top of my head plus pain where you would wear a headband.
I have had 3 accidents which resulted in whiplash so I thought that was an avenue to try so I’ve been seeing a chiropractor but that’s been a few months and I feel no relief or difference in my neck pain or headaches.
My parents just told me about their pain doctor so I thought about calling him to see about a steroid injection, but I feel this is just a bandaid and not going to give me the answer to the cause of these issues.
I am going to follow up with my pcp tomorrow and ask her about some of the things you mentioned.
I know there is a reason for some of this but getting there has been the hardest battle.

REPLY
2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 13, 2020
In reply to @camicorn85 "Hi and thank you for your response. Over the last 10 or so years, I have..." + (show)
@camicorn85

Hi and thank you for your response.
Over the last 10 or so years, I have had many blood tests, full thyroid panel, and tested some of my hormones. The endocrinologist I saw recently was not helpful and told me to seek therapy after saying he’d run a couple tests but he thinks they’ll come back negative, that was a bummer for sure, BUT I did start seeing a psychologist a few months ago and my mental is health is slightly better, but these symptoms consume me. The fight to find an answer consumes me and I think that is why my mental health has declined. I have been in a bad depression for the last 3 years.
I am currently not on any meds or supplements besides OTC pain relief.
One of my blood tests a few years ago showed a b12 deficiency so I went in for 8 weeks for shots and the blood test after that showed it was normal levels. I’ve also had one blood test more recent that showed normal levels.
I did not however feel any different after the shots.
I started taking vitamin b12 orally after that but still felt no improvement after months of taking it.
I’ve been to an ENT to rule that out as a cause to headaches.
My biggest problem is I get very discouraged after being told there’s nothing wrong, or that the test is negative so I try another avenue. It seems a bit crazy to hope for a positive test but at this point I want some answers.
I have migraines which I assume are genetic since both my parents have them and mine started around puberty. I only have 4-5 true migraines a year and I take maxalt for those, which normally knock them out within a day.
A few years ago I was prescribed Trokendi XR and that was a miracle drug, I for the first time in many years didn’t have a headache everyday, but due to insurance issues I had to stop it. I got that situation taken care of and a few months later I was back on it but this time it did nothing.
I wake up every morning and a lot of times a couple hours before I need to wake up, with a pounding headache that circles the top of my head plus pain where you would wear a headband.
I have had 3 accidents which resulted in whiplash so I thought that was an avenue to try so I’ve been seeing a chiropractor but that’s been a few months and I feel no relief or difference in my neck pain or headaches.
My parents just told me about their pain doctor so I thought about calling him to see about a steroid injection, but I feel this is just a bandaid and not going to give me the answer to the cause of these issues.
I am going to follow up with my pcp tomorrow and ask her about some of the things you mentioned.
I know there is a reason for some of this but getting there has been the hardest battle.

Jump to this post

@camicorn85 Have you been seen by a neurologist for your B12 deficiency? I assume you have as you have daily persistent headaches as well. A neurologist should be able to further define whether your B12 deficiency has caused neuropathy. Injections are bandaids and in fact can cause permanent nerve damage but, so can B12 deficiency....which explains many of the symptoms you listed. It was as if I wrote your list. My daughter wakes up daily with headaches, she is 19. Yes, like you, hereditary. It sucks and I feel bad because I've done this too her. I hope your PCP is a good one and knows to steer you to the proper specialist. The ideal scenario is when your Drs work together for your cause and betterment. The Mayo Clinic provides that type of team approach to find proper diagnosis and plan forward. Have you researched being seen a medical teaching institution or medical college? Are there any in your area? Mayo Clinic has 3 locations, MN, AZ and FL.

As far as mental health goes....yup, it's a huge challenge. I'm happy you are working with a professional to help see you through these unknown, frustrating and testing times. We all know that stress can create more pain and on and on it goes. Kudos to you for seeking help.

Good luck with your PCP follow up. My advice is to not give up, be your own best advocate, educate yourself by research and networking here on Mayo Connect. Drs dont always like that we do these things because we may throw too much at them but, who cares! It's our body and we know it best. Stick to your guns and keep checking things off the list until you land on a clear diagnosis or in some cases, multiple diagnosis.

My best to you. Good luck.🍀
Rachel

REPLY
ellens | @ellens | Sep 13, 2020
In reply to @camicorn85 "Hi and thank you for your response. Over the last 10 or so years, I have..." + (show)
@camicorn85

Hi and thank you for your response.
Over the last 10 or so years, I have had many blood tests, full thyroid panel, and tested some of my hormones. The endocrinologist I saw recently was not helpful and told me to seek therapy after saying he’d run a couple tests but he thinks they’ll come back negative, that was a bummer for sure, BUT I did start seeing a psychologist a few months ago and my mental is health is slightly better, but these symptoms consume me. The fight to find an answer consumes me and I think that is why my mental health has declined. I have been in a bad depression for the last 3 years.
I am currently not on any meds or supplements besides OTC pain relief.
One of my blood tests a few years ago showed a b12 deficiency so I went in for 8 weeks for shots and the blood test after that showed it was normal levels. I’ve also had one blood test more recent that showed normal levels.
I did not however feel any different after the shots.
I started taking vitamin b12 orally after that but still felt no improvement after months of taking it.
I’ve been to an ENT to rule that out as a cause to headaches.
My biggest problem is I get very discouraged after being told there’s nothing wrong, or that the test is negative so I try another avenue. It seems a bit crazy to hope for a positive test but at this point I want some answers.
I have migraines which I assume are genetic since both my parents have them and mine started around puberty. I only have 4-5 true migraines a year and I take maxalt for those, which normally knock them out within a day.
A few years ago I was prescribed Trokendi XR and that was a miracle drug, I for the first time in many years didn’t have a headache everyday, but due to insurance issues I had to stop it. I got that situation taken care of and a few months later I was back on it but this time it did nothing.
I wake up every morning and a lot of times a couple hours before I need to wake up, with a pounding headache that circles the top of my head plus pain where you would wear a headband.
I have had 3 accidents which resulted in whiplash so I thought that was an avenue to try so I’ve been seeing a chiropractor but that’s been a few months and I feel no relief or difference in my neck pain or headaches.
My parents just told me about their pain doctor so I thought about calling him to see about a steroid injection, but I feel this is just a bandaid and not going to give me the answer to the cause of these issues.
I am going to follow up with my pcp tomorrow and ask her about some of the things you mentioned.
I know there is a reason for some of this but getting there has been the hardest battle.

Jump to this post

Just one suggestion: oral B12 must be sublingual. As people age, their ability to absorb B12 through the stomach fades away.

REPLY
kay71 | @kay71 | Sep 14, 2020

You probably have tried a sleep study to see if you gasp for air. I have sleep apnea and use a CPAP machine. If I don’t use it, I wake up with a terrible headache, tired, and many of your symptoms! Also, I found out that I had many symptoms from taking Prolia. I hope you don’t take any bone strengthening drugs because hey can sometimes make you very ill and doctors don’t know why because their tests all check out.

REPLY
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