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New Member! Excited To Be Here And Have Questions


jkoconne
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Hi all,

Im new to the dinet forum but ive been reading it for a few months now and think its great! I was officially diagnosed with POTS in Aug but have been dealing with symptoms for about 5 years. I've been on a long journey to finally have some answers! but as you all know the diagnosis of POTS also leading to a whole new bundle of questions. I am going to list a few and if you can relate, have experienced the same thing, have questions too or just want to comment that would be great :)

1) Did anyone start feeling symptoms after Mono? The first bout of mono i had started my GI symptoms, The second time i had it my chest symptoms started.

2) My GI symptoms are terrible and appeared first, anyone else have this happen?

3) I've had terrible reactions to medication, doc's always told me it was an allergic reaction but when i went to an allergist he said that was not the case. I did a blood test and said i have inactive liver enzyme pathway so medication does not metabolize correctly. Has anyone heard about this before or have it too?

Its been helpful with medication dosage and which medications aren't dangerous.

4) Does anyone get craniosacral massage/body work? Its so helpful to me, best type of therapy I've found but insurance doesn't cover it :(

Please forgive my misspelled words...i've never been very good at it.

Hope you are all having a good day! there are always ups and downs but I'm trying to stay positive!

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Hi! :) Yes to question 2! GI symptoms are my worst symptoms and they appeared first. I have tried chiropractic therapy and energy healing and I did notice a slight difference after the first couple of sessions but sadly my insurance doesn't cover it either. Welcome to the forum!

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You're Welcome. :) I'm slightly lactose intolerant, but I think that's it... I really haven't found anything yet that consistently helps. Sometimes phenergan will take the edge off and other times not. Also Ginger or aloe Vera will help sometimes too. It's really hit or miss though.

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Same here, I feel ur pain with the gi issues ladies :unsure: I had several symptoms present at once but the gi ones were severe. Ive tried a few meds for the tummy, lomotil, zofram, bentyl, and didnt like any of them. Lomotil made my tachycardia worse. Out of desperation one day I used apple cider vinegar and honestly it started to settle things Including pain. It didnt fix it but it helped.(of course I phoned my doctor first)Everyday I use immodium, vinager and a good probiotic and am finally getting my appetite back after losing 35 lbs. Ohhh how Ive missed food lol

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My son's symptoms started with GI issues. He would have occassional abdominal pain, stomach aches and vomiting(started in 5th grade). The GI dr couldn't find anything wrong. The symptoms became more frequent and new symptoms kept starting. Many symptoms have come and gone, but the GI symptoms have always been a constant. We haven't found anything for the nausea yet...zofran, ativan, every over the counter med, supplements, etc... the list is very long. If he could get rid of the nausea he could be a functioning person who was able to leave the house.

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Welcome! I hope you will find this site as helpful and suppportive as I have.

My 24 year old daughter was diagnosed with POTS 16 months ago (after a viral illness). Among her many symptoms, GI issues are included. She also is unable to tolerate meds (even meds that she was able to tolerate before). She also has in inactive liver enzyme that causes her liver to metabolize drugs very slowly. She has tried craniosacral therapy, massage and acupunture. None of which have helped.

We have been to so many doctors that I have lost count. The latest doctor said that he believes the virus that she had in June of 2011 is the cause and he is running a variety of tests (he is an infectious disease specialist so many of the tests are related to B cells, NK cells, T cells, etc.) Oh how I wish I had taken a biochemistry class to understand some of this!!! We should have the results in about 10 days.

Hopefully we will know more in a few weeks!

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I can speak to the GI symptoms....they are awful! I've gained 11 pounds in 2 weeks and am so bloated that I had to go buy larger scrub pants just to fit around my round tummy - saw the doc today who shrugged his shoulders and said it was all related to the dysautonomia - manage as best as I can - "You're doing fine" - sure I am! I look like a "teletubby"!!!!!!

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Thank you for all your responses! I finally feel like im not the only one going through all of this! But its also unfortunate that you all feel this pain too. Ive tried soo many GI medication..the list is too long to type..and only zofran and phenergan (sp?) has helped. I take zofran regularly to be able to eat and on worse days phenergan. My Gi symptoms are the only symptoms that are constant while the others come and go.

Im 5'2 and for the last 4 years I was only 85-90 lbs. With a lot of zofran and hard works i just broke 100 lb! im very excited but the pain with eating is so hard. Each meal i have to motivate myself. If I could get my GI symptoms managed I feel like i could be a functional person and take more classes in college. With the exception of the flare ups of other symptoms here a couple times a month.

Is there a subgroup for POTS who GI symptoms are the main issue?

Hope you're having a good day!

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