Does This Sound Like It Could Be Pots?

[jessie45]

Hi everyone, I know no one can diagnose me, but I also know there is a lot of experience here so just wanted to see what you thought.

It is hard to narrow down my symptoms precisely without writing a novel so I will try to make it as brief as I can. I bolded symptoms so if someone doesn't feel like reading the whole thing they can see the main points

Currently, I am having
-- frequent/almost constant nausea, worse with movement, standing/walking, and much worse after eating. This seems better when laying down still weirdly enough..

--Vomiting most times I eat, if I eat more than a very small amount. Sometimes it's like acid reflux type thing and will just come up into my mouth almost by surprise after feeling nauseous and other times it takes more effort. That was especially how it started- like worse with sitting up, movement, bending, etc. Often if I stayed laying down I would not vomit.

-- Pain constant epigastric pain/tenderness that feels like a gnawing/throbbing at times. worse after eating, but sometimes worse when haven't eaten for awhile too. Also sometimes sharp pains in the lower parts of my abdomen on either side, and sometimes pressure pain across by my belly button. I can feel intestines here at times.

-- Abdominal distention/bloating Large distention to the point where I look 6 months pregnant after eating. This has not been so bad over the last 3 weeks (like not looking 6 months pregnant-wise), but probably because I'm eating even less. Still having bloating after eating anything.

--Constipation not quite as bad right now as it had been, in spring 2012, all my gastro symptoms "started" rather suddenly I felt, after a trip away, I became very constipated and eventually very distended/bloated. I had to take laxatives because after 6+ days absolutely nothing. I thought it was a fluke and I would be back to normal but I kept getting immensely constipated like that and very distended/huge bloating, pain (the pain was worse back in summer and fall 2012) etc. I had upper endoscopy and colonoscopy fall 2012 which were both normal. I went gluten free for almost a year and only recently started eating it again. It seemed to make an improvement for a short time, but then symptoms started getting worse. Did cut out dairy for a number of months too, but still with both of these cut having worsening distention, etc. Tried lots of natural treatments etc and nothing worked. Eventually went back to doctor

--Also weakness and lightheadedness happening most days when standing/walking. When I'm at work and on my feet for long periods of time I notice this gets a lot worse. I am not sure if these other symptoms are related to my decreased eating or something else. It seems even on days when I get more food or more calories in it's still happening, so it makes me wonder.

Previous symptoms
--Fainting/near fainting I fainted last summer, when the gastro issues were happening but the vomiting hadn't started till this spring. I have had quite a few very near fainting episodes where I know I would have fainted if I hadn't sat in time. Very hot, very nauseous, eyes going black, ears feeling like they were in a tunnel, everything sounding far away, etc. This day I fainted I had eaten two big cookies and a large salad, so there is no way I fainted from lack of food… I haven't had a really bad "almost faint" since probably June.

--Brain fog/concentration issues/memory loss I get this feeling that my head is in a fog, it's hard to think straight, almost feels like I'm out of my own body if that makes sense. I was getting this a lot, but haven't had it badly since probably mid june, although I still am a bit slower than usual with concentration etc, but that could be from the food stuff. Also very significant with this was that in spring 2011 before my gastro issues really started at all, I had MAJOR brain fog and memory loss while in university. I suddenly could not remember things while doing my work placement, I would turn around and forget what I was doing, what I had just read. Walk out of a room and not remember if I just did something or not, ETC. it was awful and I knew something was really wrong.

--At this time I was also having a lot of heart racing/tachycardia up to 130's, 140's, and at times chest pain. I went to the doctor and they ran many blood tests. When everything came back normal he said it was anxiety. I was very surprised as I felt I was becoming anxious BECAUSE of the symptoms, I did not feel that I was anxious until the symptoms started happening. He gave me xanax and effexor and when I noticed a big improvement with the xanax I realized he must have been right, so I kept taking them. Through that fall I was having random episodes of chest pain and tachycardia. They would often come on very unexpectedly, when I would feel relaxed and not anxious? Such as one occasion where I was watching a funny show with my family, then I went to get up off the chair and started having really bad chest pain. They chalked it up to an anxiety attack but I never felt that was what it was. [i did sometimes have the heart racing anxious feeling related to school stress too though.] I have had ECG's which were normal or just somewhat tachycardic. I have also had an echocardiogram which was normal. Eventually I was not having chest pain anymore, and the heart racing seemed to also stop. I am not sure the last time I have had these but probably more than a year ago. I have had heart rates into the high 110's or 120s at times, but it does not have the same bounding out of my chest feeling I had before that made it feel so horrible.

Random things
-I am always cold and my hands and feet especially. Everyone who ever touches my hands always says they are like ice.
-my big toes have been numb-ish for probably 2+ years. I occasionally get numbness to my fingertips

-I have had a few times where my hand would seize up if I was putting a lot of pressure onto something, and I would drop the object. (Don't know if that's related to anything or not, but scared me when it happened, it was like I couldn't control my hand for a minute).
-Although this hasn't happened for probably a month at least, there was a time for a few weeks when I would eat, and be very awake and alert and fine. Then after finishing a pretty normal sized meal, I would feel EXHAUSTED. Like so tired to the point I could not keep my eyes open and had to have a nap. Felt like I had taken a sleeping pill.

-When I am laying my heart rate is in the high 60's-80's and upon standing it's high 90's to 120s. A couple times I have counted recently and it's always went up > or = 30 beats. 80 to 110, 68 to 102, 88 to 122, etc.

-Headaches- I had very frequent headaches, and they would get very bad. Sometimes migraines. These have been better since last summer. There was a period of time last summer when I was weaning off the effexor (as I didn't feel I needed it anymore..) that the headaches were horrible and mostly every day. I think in hind sight it was related to coming down from the effexor as it has quite bad withdrawal, but I also wondered if it was related to gluten at the time. I also had really bad fatigue at that time, like practically falling asleep at work. This also could be related to the effexor. My fatigue now I think is expected with the way/small amount i'm eating.

-problems falling asleep- this could be related mostly to doing shift work, but often have a hard time getting to sleep, even if I was tired. Could be abdominal discomfort sometimes, sometimes no apparent reason. I also had a period of time where I kept waking up and couldn't get back to sleep for no apparent reason which is very unusual for me.

Overall, when I'm laying down all my symptoms seem better, and when I stand up, I immediately feel somewhat dizzy and weak, and the nausea seems to get worse. However, I am not sure if all of this is just related to my gastro issues. I am most concerned with what's going on that way and have been devoting all my appointments to that.

I have not really considered these other symptoms or thought my period of "anxiety" may be related to my current symptoms until recently. I had a flare up of the nausea and vomiting, could not keep even liquids down and had to get IV fluids in emerg. At that time, the nurse stated my pulse was 66 which shocked me as I thought my pulse was always high and had never ever seen it that low. When I went home, I started counting it while laying and came to realize that it was consistently much lower when laying down. I also started to wonder if the nausea was related more than usual to moving as it seemed so heavily linked. Strong anti nausea medications have not been working much at all for me. I have had a lot of gastrointestinal testing done and nothing much is showing up so far. The doctor is now thinking gastroparesis, and I have just had a gastric emptying test and small bowel follow through. However, with the gastric emptying test, it was a 4 hour test, and she said I could leave at 3 hours because <10% was left now. I don't know if it was still high at 2 hours and then suddenly released (as the tech mentioned that was possible??) or if that means I don't have gastroparesis, still waiting for the results from my doctor.


I just want to be better. I am wondering if I should be getting a tilt table test now after the reading I have done? I know a lot of my symptoms could be just linked to the eating though perhaps. It's hard to know. What do you guys think?? Should I mention this to my doctor?

Thank you

[kayjay]

Absolutely check with your doctor. I also would look into celiac disease and gluten intolerance- as well as accompanying nutritional deficits.

In some ways pots is a diagnosis of exclusion -meaning doctors can't necessarily find a "disease" so we are labeled by our symptoms (a syndome- not a disease).

I have POTS because I don't have MS, Parkinson's, dehydration, adrenal gland tumors, severe anemia etc. (hopefully this makes sense)

It certainly could be pots, but it also could be something else entirely.

Best wishes- I hope you get some answers and are feeling better soon.

[jessie45]

Thank you Kayjay. Celiac has been ruled out both with blood test and intestinal biopsies. Gluten intolerance you can't really test except by going gluten free and watching for symptom resolution, but I was gluten free for almost a year and symptoms just continued getting worse so that basically rules that out. I think I was/am a bit sensitive to it but it's definitely not the issue.

I see what you mean, that does make sense, thank you I hope so too

[corina]

Hi Jessie45, welcome to the forum. It seems like this could be POTS. You could talk it over with your doctor and ask if seeing a specialist would be necessary/helpful to get more answers!

[jessie45]

Hi Corina, thank you for the welcome, and for the advice!

[Guest Alex]

Hi Jessie and welcome.

While your symptoms do sound like dysautonomia it's really anyone's guess. As suggested above only a doctor or a team or doctors can order the necessary tests and rule out certain conditions or confirm POTS/dysautonomia (which is a diagnosis of exclusion).

A tilt test would be the golden standard diagnosis test for POTS - that's how I was diagnosed (and probably most of the other members of the forum) but I've only had the TTT after a whole bunch of other tests were performed in order to rule out other conditions. It might be a good idea to bring this to your doctor's attention and go from there.

Best of luck and keep us in the loop.

Alex

[jessie45]

Thank you for the welcome Alex Thank you, when I visit my GP I will mention this and see where he wants to go from there, he is an awesome very caring doctor so I trust he will do the best for me. (Couldn't say the same for other doctors in my past...)

[RichGotsPots]

Welcome! POTS is not just a racing heart rate but an increase in heart rate of more than 30 beats/min from the laying position to the standing position. A tilt table test makes the testing more objective. But if you have a pulse ox or a good continuos heart rate watch you can do this your self, then have it confirmed with a tilt test. Lay flat for 10 min, then stand up slowly for 20 min in one spot. Make sure its a quiet place with no TV or radio or other people talking to you. If you can take you blood pressure every 2-3 min, so have a clock in front of you. I never knew that I also had a drop in blood pressure too because in the dr office they tell you to stand but take the blood pressure right away. On the tilt table it took 5 minutes for my blood pressure to fall over 50 points in one shot. It started at 122 systolic, then when titled up went to 144, then after 5 min. It all of a sudden dropped to 90. Also I had my BP taken on a pulmonary stress test where I walked and then within 2 min it fell that low.. So often there can be a delay.

If you test positive on the tilt table test, then see a special neurologist about getting a sweat gland nerve fiber skin biopsy for autonomic nerve damage or a QSART.

Good luck!