I Might Have POTS!?

Hi everyone! I just found out I might have POTS. I have never heard of POTS until my doctor mentioned it to me today and I wanted to compare my symptoms to those of others who have been diagnosed with POTS and learn more about it.

I'm 20 years old and I've been having a lot of health problems for the past year and I thought they were all GI related until now. I had 2 lap cholys, one last July and my second six weeks ago. Over the past year I've been suffering from chronic nausea, vomiting, loss of appetite, intense upper right abdominal pain, dizziness, low blood pressure, headaches, weakness, hot and cold flashes, and insomnia. I dont know if POTS would explain all of my symptoms but I definitely think its a possibility.

Since my surgery six weeks ago all of my symptoms have become worse. I can barely walk up my stairs at home..I usually have to crawl or be carried. I always have to hold on to walls and random objects when I walk around in public. Sometimes when I stand up too quickly I almost fall over and need to sit on the ground. I usually have the sense that everything around me is moving even though it is still. I always thought all of this was because I have low blood pressure but it makes sense that it would be something more.

Please let me know if any of you have similar symptoms and what you did to help them!

[Lipham]

I have quite a few of the same symptoms you do...but from the looks of it the major thing you need to do is a Tilt Table Test, because that will give you and the doctors more insight on what's going on.  Stay hydrated, eat a lot of salt, wear compression stockings (they help me a bit, but it ***** wearing them).  That's my best advice, sorry it's not too helpful.

[Heiferly]

What gives me pause is that it sounds as if the dizziness you are experiencing is of a vertigo nature, not the lightheadedness that tends to be associated with POTS.  Have your doctors scheduled a tilt table test to confirm a dysautonomia/POTS diagnosis?  

If it is POTS or any other type of dysautonomia, one option you have is heading to the Cleveland Clinic's autonomic clinic for comprehensive testing and treatment recommendations since you have the advantage of living in Ohio.  They have tests available that aren't done elsewhere that may provide valuable insight into your condition, particularly if there is autonomic neuropathy involved in some of your symptoms.  

I'm reluctant to advise you on what to do to treat your symptoms under the presumption that this is indeed dysautonomia, because while that's certainly possible, it's also possible that this may be something else and that any advice we give could potentially be bad advice if based on a faulty assumption.  Staying well hydrated is critical for anyone with low blood pressure, so I'll say that without reservation.  Large quantities of salt can be rough on the stomach, so considering your symptoms, I would advise you to consult with your doctor before making any dietary changes to increase your sodium intake (which is done to cause water retention, and thereby raise blood pressure).  

There is a type of walker called a "rollator" walker that has wheels so that you just walk at a normal pace, continuously pushing it forward (no lifting and shuffling), but you still get the benefit of the stability from having something to hold on to as you go.  It also has a seat built into it, so at any point if you get unsteady and need to sit, you have a chair with you.  (It has locking breaks to keep it from rolling when you're sitting).  There are also two models that I know of that have foot rests so it can be used as a transport wheelchair as well, but the vast majority of them do not have this feature.  Either way, it sounds like a rollator walker would help you considerably with your mobility until you get this sorted out, so that you don't have to cling to walls/objects.  If your doctor writes a prescription, your insurance should pay for it.  Something to consider.

Because of the headaches and vertigo, you also may want to consider a consult with a neurologist just to rule out other diagnoses which could be causing these if you haven't already been evaluated by a neurologist.  

[halbashes]

I too would definitely recommend Cleveland Clinic to evaluate the possibility of POTS, or some other form of Dysautonomia.

Could you elaborate upon some of your dizziness symptoms?  Your description does sound a bit more like vertigo than the usual dizziness/lightheadedness associated with Dysautonomia.

Have you had any trouble controlling your blood sugar that you're aware of?

[Mshorty880]

Thanks for your suggestions! I have already seen a neurologist and received five rounds of IV infusions. I'm seeing a cardiologist at the Cleveland Clinic this week; I researched the tilt table test and will ask more about it when I'm there. I've had low blood sugar in the past but I don't think it has been alarmingly low to an extent that doctors have been concerned. I am constantly extremely thirsty and drink about 15-20 normal sized water bottles each day. One of my doctors suggested diabetes incipidus as a possibliity.

I'm constantly dizzy and nauseous, my dizziness increases when I stand up and/or begin to walk. I often feel faint when I am laying or sitting and then stand up too suddenly. Even when I am laying still, I have the sensation that the room is spinning around me. These sensations get worse when I move my head or body. I have an incredibly difficult time walking upstairs, carrying things and walking uphill.

I'm confused because my symptoms sound like I have both vertigo and pots. I experience the moving and spinning feelings of vertigo and the lightheadedness and weakness of pots. Both conditions involve nausea and vomiting. I feel like I could have both. Is this a common combination?

[daisylamb]

Dizziness and nausea was my most disabling symptoms, just as you described. I even had inner ear surgery, which made me much sicker. Not enough blood gets to the inner ear and upsets the equilibrium. I hope you get some good help at Cleveland Clinic. I would like to hear about your visit. This has been a part of my life for many years and my daughter's for ten.
Blessings to you,
Mary

[Heiferly]

Mary,

You've been to Cleveland Clinic's syncope/autonomic clinic, right?  (Sorry if I'm confused and that's incorrect.)  What did they say about your equilibrium issues?  Did they do a biopsy to check for autonomic neuropathy in case that's contributing?  

[daisylamb]

Yes I saw a very nice lady doctor and she told me I have oscillatons of blood pressure suggest labile autonomic nervous function and possible cardiovascular sympathovagal imbalance. There is a lot of written results from the TTT, but I don't know what it means. I will be seeing a specialist in about two weeks, from Toledo. I am looking forward to seeing him. Since I take so much medicine, my tilt was much better since the last one. Anymore testing will be up to my new doctor.
Thank you for asking,
Mary

[Mshorty880]

I just had a tilt table test at the Cleveland Clinics autonomic clinic and I have late POTS. My heartrate didn't get excessively high for 15 minutes but I almost passed out. My doctor prescribed Florinef, told me to eat more salt and suggested support stockings. Did these help anybody with the nausea and dizziness?

[halbashes]

The Florinef, increased salt, and support stockings are likely to ease your lightheaded/dizziness symptoms.  I'd also recommend avoiding certain triggering situations like standing in long lines, or extreme temperatures.

Have you ever been to an ENT Specialist?  The reason I ask is because of your vertigo symptoms.  If increased salt worsens your symptoms, then there may be a co-existing problem causing the vertigo.

Your current treatment may be helpful to your nausea as well, it really depends on the patient.   If your nausea symptoms don't improve, then you can ask your doctor about anti-nausea medication.

[LivingInHope]

You said "drink about 15-20 normal sized water bottles ".  It made me think of an old doctor show episode where this girl was drinking lots of water for a diet and they diagnosed her with water intoxication.  According to "wrongdiagnosis" a com website, One of the underlying causes of water intoxication can be diabetes insipidus.  Another can be low salt levels in the blood.  Symptoms they list include:
"Nausea
Muscle cramps
Disorientation
Slurred speech
Confusion
Hyponatremia
Gastrointestinal dilation
Dilated bladder
Hydronephrosis
Edema "

I sure hope they do a 24 hour urine checking your sodium level and volume of urine.  Also, I hope they check any endocrine hormones that might have to do with some of your symptoms.  Have they done a 24-48 hour holter monitor yet?  Do you feel your heart racing at night (just one of many possible reasons for insomnia)?  

A tilt table test is what revealed P.O.T.S. for me.  But, I don't drink as much as you do, although I am often very thirsty.  Yet, they were giving you IV fluids- did you exhibit orthostatic hypotension- is that why?  I know they have made me feel worse before when I was given IV fluid bolus style (fast).  It made me shake and I didn't feel better.  How did the IV fluids make you feel?  

Water is a natural diuretic and can lower your blood pressure.  Did they say anything about how much water your drinking?  

You said you had 2 lap cholys- did they reveal anything about your gall bladder as to why you have that upper right abdominal pain?  Have they checked your GFR for kidney function?

[halbashes]

It's not uncommon for patients with Dysautonomia to experience episodes of extreme thirst.  (MedHelp's Dysautonomia Tracker even includes "Polydipsia" as a symptom for those of us who experience this.)  I'm not sure if anyone in our community has been diagnosed with Diabetes Insipidus, but you definitely make a good point in bringing this up.  This too, along with the electrolyte abnormalities that often go along with Dysautonomia can both cause symptoms of extreme thirst.

I'm surprised you had trouble tolerating IV fluids.  Was it a dextrose solution instead of a saline or electrolyte solution perhaps?  Most patients with Dysautonomia feel better after IV fluids.

[LivingInHope]

Not sure what kind of solution.   But when ever they give it to me bolus style (fast free flow, not measured drip), it gives me the shakes.  It's because they thought I had dehydration.  I have the extreme thirst problem you mention, but don't think I get past 10 glasses a day at most.  I often gulp down a whole glass at one time because I'm so thirsty.

[Mshorty880]

I've had a 24 hour urine test before which didn't reveal anything. Last week I had a urine and blood test in which I could only drink 3 liters of water 24 hours prior to it. The nurse said the results looked pretty normal but shes still waiting to hear back from the nephrologist. The doctors I've spoken with are now doubtful I have diabetes insipidus but still don't know if I'm having problems concentrating urine.

The IV infusions were for migraines. I typically felt pretty sick directly after the infusions, but my headaches improved during the following week. The became worse after that and are currently pretty bad. The infusions occurred about a six weeks before I was diagnosed with pots.

My right upper abdominal pain is the most frustrating part of my illness because doctors cannot understand it. I get stabbing pains that often radiate to my side and back many times intermittently each day. It happens a lot after I eat. Doctors are reluctant to explore my biliary area internally because its so small and scarred down.

I have tried nearly every nausea medication on the market: zofran, tigan, kytrol, phenergan, anzamed, reglan, and composine. None of these have provided relief. I know nausea and vomiting are listed as symptoms of pots, but I wanted to know if anybody else had very severe nausea. My nausea is constant and is always at a 9 or 10. I vomit up to 5 times each day and am constantly dry heaving and retching. I wanted to know if this could be completely caused by pots, or if is more likely gi related.

I have been on flourinef for a few weeks now and havent noticed any improvements. My blood pressure is occasionally higher than usual but I dont feel any better. My cardiologist will probably start me on beta blockers in about a week.

I'm in the Cleveland Clinic Childrens Hospital for Rehabilitation in the chronic pain unit. I've been living here for 2 weeks so far. I do physical therapy and pool therapy each day, the activities make my symptoms exponentially worse. The pool is extremely difficult for me because I am constantly moving, as is everything around me. Its very difficult because I thought that getting out of bed and being active would make me feel better, but it only makes my nausea, dizziness and stomach pain worse.

[enzymelover]

Hi. I was wondering if you've had an MRI of your pituitary yet. Sometimes a pituitary lesion  can be present even though blood and urine tests are normal or near normal. This could certainly cause diabetes incipidus, and all of your other symptoms.
Has your endocrinologist talked to you about the possibility of pituitary dysfunction?

[halbashes]

I'm sorry your nausea, and vomiting symptoms are so severe.  Have your doctors recommended for you any dietary changes?  Do you happen to be temperature intolerant at all?  For example, I'm temperature intolerant, and unable to eat warm foods.  My diet requires mostly cold, or room-temperature foods.  You may find that eliminating foods of a certain temperature helps to alleviate some of your nausea, and vomiting.

Gastroparesis, (Delayed Gastric Emptying), is also common in Dysautonomia.  Milder forms can be managed through diet, and medication.  A Nutritionist may be able to help you learn which foods are easiest to digest in patients with Gastroparesis, but because your symptoms are so extreme I'd recommend that you see a Gastrointestinal Specialist as well.

Lastly, eating several very small meals each day is preferred over larger meals.  Not only because smaller amounts of food are easier to digest, but because smaller amounts of food will have less effect on blood pressure.  Low blood pressure can also cause significant nausea.

[Mshorty880]

I've had several MRIs that turned out normal. I also had a similar scan to look at the main nerve of my brain, I think it was called an MCI or something similar.

As for dietary changes, I'm lactose intolerant so I try to avoid milk products but I've never heard of temperature intolerance. How did you figure that out? Is there a test or is it just something you need to experiment with?

I had a gastric emptying study a year ago before my first lap cholysystectomy that showed delayed gastric emptying. The test was repeated a few months after the surgery and the gastric emptying rate was slower than average but still within the normal range. I still have all the symptoms of gastroparesis but doctors dont seem to think I have it. I have an appointment with my gi doctor this Friday, so I'll be sure to inquire more about gastroparesis.

I've been trying to eat small meals more frequently all year, but its been very hard because I always forgot to eat when I was away at school. Its a lot easier to eat frequently when I'm at home in the hospital. I'm served three meals a day and I try my best to constantly graze and munch between meals. Eating usually makes me feel a lot worse so its tough to eat a lot at once. I'm eating as much salt as possible and taking flourinef to try to raise my blood pressure. Its sometimes higher than normal but not consistantly and I still feel just as lightheaded.

[LivingInHope]

The MRIs that you had- did they specifically target with and without contrast looking at the pituitary, or were they just general brain MRIs?  The contrast look at the pituitary is really important for detecting lesions on the pituitary.

[evo123]

have you had an MRI of your adrenal glands a growth there can cause similar problems.  I to may have POTS and have an adrenal tumour, my doctors are currently trying to work out which is making me unwell...do I have POTS or is it the tumour.
I hope you get some answers soon.

[halbashes]

Do you experience more symptoms in warmer or colder environments?  If you experience more symptoms in warmer environments for example, then you may also be intolerant of warm foods as well.  I'm sorry if I didn't explain that well in my previous post.  Does that make more sense?

[Mshorty880]

I dont think my MRI looked at the pituitary or adrenal glands because it was primarily for migraines. I'm seeing my cardiologist wednesday and an endocrine specialist soon so I will ask more about future MRIs.

Also I'm not really sure about temperature intolerance. I get frequent hot and cold flashes so its very difficult to tell. My symptoms do get worse when I spend time outside in the sun though. Do you think this means I'm heat intolerant? I'll ask my cardiologist for more details about this. I'm pretty sure she will increase my dosage of flourinef and probably add beta blockers or something else too. I have been on flourinef for three weeks and am still having dizzy spells that keep me crawling on my hands and knees when I am not in bed.

Thanks again for all of your helpful suggestions!

[Mshorty880]

Also about the gall bladder area pain, my gi specialist told me its just post choly syndrome, which basically is a general label for pain following a choly. There isnt any treatment for this..she basically told me there's nothing she can do about it and I'll just need to live with the stabbing pains. I already posted in the gi community about pcs but has anybody here had cholys or right upper quadrant pain?