Overactive Gallbladder / Hyperkinetic
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Looking for anyone with similar stories and if they’ve had any specific testing or resolution that helped.
For about 2 1/2 years I have had RUQ pain. I am an avid video gamer and it would hurt to just sit in a regular sitting position for any long period of time, I would have to adjust myself quite frequently. The only relief I would have would be to lay down flat or be standing up any walking. I went several months without going to a doctor. Finally went and had a CT scan of the abdomen with barium ( contrast and no contrast) everything came back clear. Doctor said if pain wasn’t getting worse basically stay doing what I was doing. That’s was January 2016. Fast forward to December 2017, my grandmother ( who raised me as my mom) passed away. It was an incredibly stressful time, and it caused my pain to flare quite bad. I went to the doctor and without doing any testing he thought I may have ulcers. He put me on carafate 4 times a day and omeprazole 20mg, twice a day. He said to come back in 8 weeks. During that time I went on an ‘ulcer diet’ eating very strictly and bland foods and veggies, I weighed 140 and lost 10 pounds. Went back to the doctor and he basically said if that didn’t work he didn’t know what. So I found a GI specialist. In March of this year he sent me to do an upper endoscopy to rule out ulcers. It came back clear except a mild to moderate case of gastritis. Which I did have some acid reflux issues, but nothing too severe. But he said he didn’t believe this would cause the pain I was having in the RUQ area. But did put my on pantoprazole 40mg once per day. So he sent me for a HIDA scan with CCk ( kinevac) my ejection rate came back at 89%. I didn’t have a recreation of pain however, I felt fine the whole time. My gallbladder did take a bit to show up though. I also had an abdominal/ GB ultra sound which came back normal. Doctor said he believes I should have my gallbladder taken out and referred me to a surgeon. Says they had another patient who had same thing, has success with surgery. Well, I made an appointment with the surgeon but it’s not until July 24th.
Last week ( last week of June here in 2018) , I started having a lot of muscle twitching ( life was pretty stressful but thought I had it under control) and then I went to work and started feeling really sick. I got incredibly nauseated, I started kind of convulsing due to feeling so sick. I was freezing cold and sweating. This went on for 2-3 days. Usually would happen when I first woke up and these would not be triggered by food.
I ended up in the ER on Wednesday of that week, because I was also having a very fast heart rate. They did a CT scan of my heart and lungs, and upper chest X-rays, EKG, said everything came back normal. Blood work, electrolytes, urine, etc. they sent me home and said to follow up with my PCP. That night I went to bed at 10pm, woke up at 12:30am from a dead sleep and the episode started all over again. Nausea, just over all very sick feeling etc. I took nausea pills which helped a little bit but felt very week all over . I went to him the very next day and he wasn’t much help. Told me to go to neurologist and possibly endocrinologist. ( I setup the neuro appointment for end of August, although the twitches aren’t really that pronounced now) but he really couldn’t do much else for me.
I’ve still till today been waking up with nausea and I’ve been eating barely anything again, I really just force myself to eat cause I have no appetite and I usually love food a ton. Nothing but water, some Gatorade ( as suggested by doctor) fruits and veggies, chicken and rice with no seasoning, some potato dumplings. Whole wheat toast with a little peanut butter, raw almonds. And only a little bit at a time. I’ve dropped weight again after gaining it back. I am on vacation this week for the 4th, but I haven’t felt like doing anything because I have this general feeling of illness. I also got an Apple Watch to monitor my heart rate. On the couch it’s anywhere from 78-100, but if I do anything like house work, walk around outside, sing, talk - it shoots it to 140-150. I was vacuuming on Sunday and noticed it went to 175. I did tighten my watch and everything. But like i said, at the ER they said the CT scan and EKG showed fine. I’ve also noticed I’ve started getting really really cold feet ( I’m usually a cold person) but they are freezing cold half the time with socks on even and just start to get real sweaty. Sometimes even with no socks. Just starting to get sweatier than normal.
After the ER I started taking a daily supplement after dinner of 200mg of chelates magnesium. Gives me a little diaherra the next day but nothing too bad. This morning I felt like my stool was lighter than it should be but I can’t tell 100%, I can tell that not all my food is digesting properly though.
Sorry this is so long, just want to really get this put out there. Someone suggested POTs syndrome to me, but I’m not sure. I do have another appointment next week with a new GP who has expierence with that just in case.
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Guest sharyejane
Posted
Your story is amazing for me because I can relate to a whole part of your symptoms. In December last year (17) I became very ill what was supposed as Diverticulitis and GB. Had blood work CT, Ultrasound, MRI Abdomen tests which come back with fatty Liver, sludge in GB and I know I have a bad Pancreas.
I too had freezing cold legs and feet yet the top half of me would be sweating it was very weird indeed and at the end of Dec I was eating just Porridge and even drinking water became a trigger to sweating. There is no doubt what I have is an eating disorder and yet the specialists say its not even though the evidence points to GB let alone my other issues.
I do believe stress has played a big part of my illness whatever it turns out to be but after eating and also laying down/sleep are the two main times of illness. heart rate would rise and severe temperature yet no actual temperature measured, I nearly brought a new thermometer!!! These attacks would last anything from full digestion period of up to 3 to 5 hours or immediately after eating, I could not make any deduction as to what was setting it off, all I can say is chest pain and right hand side pain were key. I also used to get a pain in my left arm pit which could travel across the chest from either side I do have to say that sweating is damn awful especially now its hot but my house is very cold and in winter this sweating was just unreal. I did not know what was happening to me and Dr's were of no help generally but I do understand my then situation did point them to other things, they really took notice though in Dec when I lost 35 Lb in weight through sickness and loose stool. I am still lost but I have the bulk of it under control with diet and in this weather we have now I could not tell you whether its still illness or heat?
Please keep your thread updated with whatever happens with you I may just have what you have and vice versa. Thanks Julian