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Long term headaches and stomachaches
Chronic Pain | Last Active: Oct 22, 2020 | Replies (6)Comment receiving replies
@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?
Replies to "@camicorn85 Hello and welcome to Connect. I'm Rachel, and am glad you came to seek help...."
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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.