URGENT PLEASE HELP

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Hi all,

This is something very urgent and stressful and I'm hoping that anyone can help me out as I am at a loss... I am 17 years old, female and have not been to school in months, have not left the house only to go to hospital or clinics.

In short:

Old chronic persisting symptoms:

Severe abdominal pain )every day) made worse when having a bowel movement

Nausea (every day)

Vomiting

Migraines (since I was 14 years old)

Acid reflux ( diagnosed 9 years old)

Stomach upset feeling

Anxiety (however currently on cipralex as they thought migraine was tension headache)

New symptoms (popped up 1-2 months ago)

Whooshing, ringing in my ear

Dizziness, lightheadedness, faint feeling

Seizure (happened once so far)

Left side pain

Shaking, teeth chattering, fast heartbeats

Frequent urination every 10-15 minutes + hot urine

My story:

6 months ago I had severe vomiting and severe stomach and abdominal pain. Went to the ER did not find the gastritis infection but did an endoscopy which showed inflammation and acid. Took all sorts of medication for inflammation and antacids 2 months after the pain sort of calmed down but the vomiting and nausea never stopped. I lost about 9-10 kg, I do not drink soda, eat beef, don't eat chocolate, no alcohol, no acidic anything my diet is mostly plain and some days I barely eat anything as I know it will cause pain and vomiting.

Months after the vomiting got worse and the abdominal pain increased to the point I was screaming in pain. I've done another upper endoscopy which showed a normal stomach and a colonoscopy which showed mucus but the doctor said it was "normal".

In total, this has been going on for 6 months and I believe that my body is giving up. 4 days ago I had diarrhea (I am mostly constipated not having a bowel movement for weeks but I took a laxative) and vomiting and severe pain at 1 am where I was screaming and my mom found me on the bathroom floor. The next day, I suffered a seizure had a head CT scan done it came back "normal" had an MRI done came back "normal of the brain" but it showed a severe deviated right septum which the doctor said could be a cause for my migraines. I am supposed to be doing an EEG today but doctors do not believe that the seizure was caused by neurological problems the EEG is just to rule that out.

I have done an abdominal CT which did not show anything but a small mesenteric lymph nodes which the doctor said is nothing to worry about because it just showed my body was previously fighting an infection.

I woke up this morning very dizzy, teeth chattering, and shaking and feeling like I was going to have another seizure. The only thing that helped calm down was warm water, a cold compress, and some Corn Pops. About a week ago I had to go to emergency because I was vomiting a lot and in a lot of pain and my mom did not want me to get dehydrated. We waited for 3 hours for the doctor to show up and all he said when I told him about ALL of my symptoms was that it is anxiety. I have had worse anxiety in the past and have never experienced this before. I have always been taking my anxiety medication for years and am confused to as how he could still think it is anxiety if the medication is not working. I have seen a psychiatrist and she told me she believes some of my symptoms like the ones I have had for years: panic attacks difficulty breathing etc in situations is anxiety but what I am experiencing now cannot be anxiety especially because anxiety cannot have me waking up screaming in severe pain.

My whole family is on edge I am terrified of having another seizure and I truly truly do not know what to do. The doctors are jokes here and I in my condition I do not know if it is possible to get outside treatment. Can someone please please offer me any advice on what to do or something.

Thank you

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11 Replies

  • Posted

    Based on my own experiences with a lot of your symptoms but not the seizures I would recommend looking at your diet.

    I had the fatigue, the pains, and lots other of what you mention and it was all because I didn't know it but was allergic to oily fish and I was eating a lot of it!

    Do a food diary immediately and cut your diet to very basic and start rolling out the possibility that this could be a food allergy or intolerance.

    Let me know.

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    • Posted

      Thank you for your reply. Did an EEG which showed no abnormal electrical activity in the brain. They believe that the seizure was due to some imbalance in the body or lack of oxygen or something yet I do not know nothing is ever for certain. Went to see an ENT for dizziness , tinnitus etc showed a middle ear infection but she thinks it's some involuntary anorexia nervosa? Have you ever heard of this? I'm not sure how this is possible as I have never had any body weight issues, no dieting etc but it isn't making it seem as if I am choosing to be in this position and cause this suffering onto myself. Not sure what else I can do...

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  • Posted

    It is so surprising what anxiety can do to your body and your mind, it is a serious illness, so if doctors have ruled everything out then if I were you I would see about different medication for your anxiety, don't underestimate anxiety as it can lead to a lot of your symptoms, just keep working with your doctors, honestly trust them. That's the best advice i can give you. Good luck x

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  • Posted

    We have so many of the same symptoms!!!!! I'm a 18 year old girl and have been suffering from extreme nausea and burping for a few months now. It's so frustrating and I can totally understand how it makes you feel defeated.

    Are you taking any anti nausea medication?

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    • Posted

      i was however I am on the SSRI cipralex for anxiety and I remember it causing fast heartbeat when I took the two. I hope you find relief with your nausea and burping I totally understand. Have you gotten an endoscopy done? Sounds like GERD which is a lifetime thing. 
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  • Posted

    Ask your doctor about secretin stimulation test for Zollinger-Ellison syndrome, I had hyperacidity which caused fast heart beat , muscle twitches,headache, and anxiety.... mine was gone after omperazole. Good luck
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  • Posted

    Although the severe constipation and mucous may suggests cystic fibrosis and rule out ZES , the lymph nodes made me worried about ZES , however cystic fibrosis can also be diagnosed with secretin stimulation test but the best way is by sweat test which is quite cheaper and more specific ,but most doctors think cystic fibrosis is infant's disease ,I would do the sweat test first if I were you(assuming there's nothing wrong with your brain and nerves and your anxiety is due to your pain)

    Good luck

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  • Posted

    Hi z13479

    Have you had your B12 checked..B12 deficiency can cause a lot of the symptoms you have described. If you are not eating your B12 can become very low. Ask your doc to do a B12 test ...best wishes....

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    • Posted

      hi, yes B12 has been checked and is normal. Althogh Vitamin D is severely low. Can the symptoms be the same?
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    • Posted

      Hi z13479

      If you go to a very well known search engine  (cant mention on here  because it may be moderated) and search 'B12 and epilepsy'.. it doesn't only involve B12 itself but involves all the B complex vitamins.... check it out...

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  • Posted

    Hello,

    Very sorry to hear and I can feel the pain with you (and your family)

    since my 14 year old daughter has been in a similar ordeal and missed a lot of school, but when vomiting one's heart out, it's impossible to go,

    and no, it is not school anxiety, or school absentism, dear paediatritian-quick-to-conclusion-jumper.

    'Everything tested' is also a word, I truely dislike since wether we nor you are tested 'everything' (which is impossible).

    We e.g. are missing a pelvic angio- and venogramm (including exclusion for pelvic congestion re pain) for example or a capsule endoscopy to assess small bowel or brain MRI since having braces (huge artefacts with metal in MRI)....

    have you had all those tests?

    We also had thyroid; cortison and HIEE (pheochromocytoma exclusion) in urine tested, parathyroid hormone (as Calcium is on higher end but bones have oedemas).

    But no catecholamin or C3, C4 or C1Esterase inhibitor (hereditary angioedema that can manifest only in abdo pain) test though

    and the one off porphyria urine test was a farce.

    Have you had all these?

    .... See, there is a lot to be tested that concerns abdo pain and/or seizures and rest assured, it takes years to click through that list, IF seen as a possilbility by a doc finally. 

    (please read up on neuropsychiatric porphyrias, some forms of porphyria do NOT have any skin manifestiations like blisters. But abdo pain, too.)

    Taking the birth control pill to avoid further normal functional but on bigger end (3cm) luteal hemorrhagic cysts.

    We had the appendix removed (pain there), but unfortunately no gynaecologist was called to check for endometriosis, the subtle endometriosis, that needs a certain light and experience of surgeon.

    BUT I can tell you one finding we had and never would have thought before:

    EDS (Ehlers Danlos syndrome), something wrong with connective tissue explaining so many prewarning but not severe symptoms (like constant ankle injuries, holding pen problems, blurry vision)...

    and EDS has a hell lot of manifestations since it concerns very different genes all encoding the making of collagen, connective tissue and this stuff sits everywhere.

    Unfortunately most docs don't know about it,

    unfortunately for the most common one, there is no genetic test (hypermobility type, only 10% TNXB gene positive) and this rubbish EDS also can muck up the gastrointestine function (gastroparesis, constipation very common)

    - have you ever had a gastric emptying study? it's really easy and not that expensive (compared to genetic testing)-

    and

    there is a very rare influence due to this connective tissue weakness called 

    Chiari malformation type 1 (CMI),  

    where epileptic seizures are common thing to happen. 

    10% have some hypermobility and as long as one is a contortionist or gymnist or does funny things with skin, it doesn't matter.

    The problem comes then, when pain is due to it, too.

    Seizures are a bit like 'fever', a symptom and so many possibilities.

    But then again: a list of exclusion or confirmation to be done to consider and ask about from EDS to porphyria please. ???

    (POTS is very commong for EDS too. My girl has 200pulse often.)

    Would a wheel chair be an option at school - when nausea and vomiting were manageable- as a helping tool to use the energy in classroom, not for the many physically exhausting walks? (We have that now in place)

    We needed 3 rheumatologists and we had at least 5 'Dr.Feelgood's as I call them. Doctors who brush EVERYTHING onto psychology, anxiety, and yes, as powerful as that can be, no, it is not always the answer.

    You need quite some stamina to keep on fighting for the next referral and see another doc or specialist, no specialist knows it all,

    a pair of fresh eyes allows a new look and new ideas

    (and a credit card for the dept, we as parents do take this on us,....)

    Best of luck!

    We btw drink our green juice daily, we do take PEA and Amitriptyline (for pain, not for depression), Q10 just trying to support the own system, the nausea and vomitting has eased over the passed year and after appendectomy, but was horrid, really so bad vomitting blood at a point and loosing weight (gastroparesis positive); and will get tested for some infectious diseases like Lyme, as I was obvious to the blind eye (erythema migrans, and blood positive) infected with Borrelia and she around me at that time, exposed to same infection risk, but not treated with weeks of antibiotics as I was....there are 100s of possibilities from nothing to something, from something treatable to something not treatable.

    I always say 'knowledge is power'.

    ALL ALL THE BEST!

    Hang in there!!!!! It's really, really hard!

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