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17 year old with POTS
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17 year old with POTS

Hello, I am a 17 year old female with POTS.  I decided I would finally post my story here to see if anyone has any suggestions.

Since I was a little kid, I have had vaso-vagal syncope from pain which I inherited from both of my parents.  In early 2007 I developed a sinus tachycardia up to a heart rate of 210 bpm during exercise.  In October of 2007 I got mono with a primary symptom of dizziness.  After that, I kept on getting episodes of dizziness which were diagnosed as migraines, and helped by migraine medicines, and later I developed headaches too (which are currently controlled by taking the birth control pill continuously and occasionally using Imitrex and Tylenol).  I then developed stomach pain which was diagnosed as lactose intolerance.  The stomach pain got better for a while but then it came back and I was diagnosed with constipation.  I was started on a daily laxative which needed to be increased many times because I would still get constipated (I currently need 3 different laxatives to avoid constipation).  I then developed autonomic nervous system problems like dizziness, shortness of breath, flushing, cold intolerance, dilated pupils, occasional low blood pressure, and urinary symptoms.  I also feel most comfortable with my legs up.  My current main symptoms are shortness of breath, nausea, dizziness, fatigue, stomach pain, and occasional headaches.  I was diagnosed with POTS and was started on Florinef which has helped a little.  I have tried Midodrine twice and it helped a little bit one time.  I have also tried Pyridostigmine which made my symptoms worse.  I drink 80 oz of fluid a day and try to eat salty foods.  I am a vegetarian and very lactose intolerant.  I avoid beans, caffeine, and foods high in fiber or fat (because of gastroparesis).  Before I got sick I weighed 110 pounds and my current weight is 140 pounds.  I am 5 ft 4 in.  I find it very difficult to exercise but I am currently riding a recumbent bike and walking a little bit.

The tests I have had are blood tests (normal, occasionally low iron, also still showing an elevated level of Epstein-Barr antibodies even 3 years after the mono), stool tests (normal), urine tests (normal), KUB’s (showing a lot of stool and sometimes a lot of air), abdominal, pelvic, and chest CT scans (all normal), brain MRI (normal), Smart-pill (read by first doctor as normal, read by second doctor as possible gastroparesis), colonoscopy and upper endoscopy with biopsies (normal), gastric emptying scan (showing gastroparesis), EGD and small bowel manometry (showing gastroparesis), upper GI small bowel follow-through (showing severe GERD and slight dilation of the terminal ileum), hydrogen breath test for small intestinal bacteria overgrowth (normal), rectal manometry (showing pelvic floor dyssynergy and megacolon), HIDA scan of the small bowel (showing slight delay of the small bowel), Sitzmarker study (normal, but was taking laxatives during the study), EKG’s (normal), stress echo (showing sinus tachycardia), holters (showing sinus tachycardia and 10% PVC’s), and echo with bubble study (normal).

My current medications are Prevacid (30 mg 1x a day), Florinef (0.1 mg 1x a day), Amitiza (24 mcg 2x a day), Neurontin (300 mg 3x a day), Reclipsen (1x a day for migraines), Reglan (5 mg 4x a day), Docusate (250 mg 2x a day), Ambien (3.125 mg 1x a day), Milk of Magnesia (2 ½ Tbs 1x a day), Culturelle (1x a day), Salt (½ tsp mixed with water 1x a day).  I also take as needed Midodrine (2.5 mg), Imitrex (50 mg), and Zofran (8mg).

My questions are:  How do I get enough salt and fluids especially when I am nauseous?  Should I undergo autonomic nervous system testing somewhere (I have been evaluated at Stanford but they don’t have an autonomic lab)?  Should I try a beta-blocker like Propranolol?  Would it help to raise the head of my bed or wear compression stockings?

Thank you in advance for your help.  You guys seem like a really supportive forum and I am excited to get your feedback!
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Avatar_f_tn
My son,15, has very similar symptoms to you.  He has  nausea, dizziness, constipation, gastroparesis, headaches, migraines, tremors in both hands, and more.  Most of these symtpoms are under control or less severe with medication.  He sees a POTS specialist,(neurologist and gastroenterologist) and has had autonomic testing.  

He, too, even with daily laxatives only goes to the bathroom once every 5 days or so.(without laxatives every 10 to 12 days).  He had put on weight from inactivity, but has since started taking it off since he is feeling better, he does water jogging.

Please read up on the reglan, it can cause permanent bad side effects.  My son takes erythrocin(sp?) for his gastroparesis (250 mg 3x a day).  To get extra salt, his doctor has him taking Thermotabs(over the counter med-2 pills 2x a day).

He wakes up nauseated every day, and was unable to get out of bed until 12 pm to 2 pm (sometimes later).  Since increasing his current meds, he has returned to school after not attending for 1.5 years(he only goes 4 hours but that is a big improvement).  Zofran did not help him at all.  The doctors determined that his nausea was neurological, possibly from silent migraines and insomnia.

My son's main meds are doxepin, fludrocortisone and erythrocin.  Plus he takes several supplements (thermotabs, CoQ10, L-carnitine, vitamin D, vitamin E, B12).

Christy
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Avatar_f_tn
Hi,

I just read your post- I'm so sorry you've been so sick. This condition can be just awful.

My teenage daughter has POTS, as well as migraines and a multitude of g.i. issues including gastroparesis, abdominal migraines, cyclic vomiting and I.B.S.

Her main specialists are: the neurologist and gastroenterologist team that did the tilt-table test, her gastroenterologist, and her cardiologist.  They're all at top-notch hospitals.  The cardiologist said he doesn't think tilt-table tests are necessary for diagnosis and he wouldn't have bothered doing one- her symptoms are classic.  

He said there's a list as long as his arm for medicines for POTS, and what works for each person is different.  He had her give him her top 3 symptoms for him to focus on first.  

I have read that beta blockers are the first defense against POTS.  Here's a link to a Mayo clinic doctor talking abut POTS, including about beta blockers:  http://newsblog.mayoclinic.org/2009/02/27/mayo-clinic-study-identifies-pots-treatments/

The cardiologist told us to raise the head of the bed by putting a cinder block underneath it.  She's also on Thermotabs, like Christy's son.  She takes 4 tablets, twice a day.  (Definitely check with your dr first, but both the cardiologist and the neurologist/gastroenterologist wanted her on them).  That covers the salt, thankfully, because right now she just can't eat.

I know getting enough to drink can be almost impossible when you're nauseous.  It's just miserable.  And then that makes things worse.  My daughter usually has a really tough time with liquids- even worse than with solids.  The dr said that has to do with the way her nerves are interpreting the liquids.  What cuts her bad stomach flares is being hospitalized with just i.v. liquids- nothing by mouth for a few days.

She's on quite a bit of medicine, but the doctors and pharmacist all okay it.  And we're about to start more.  But the cardiologist said he won't give up until we give up- and we won't give up.  :)

Lots of warm thoughts going your way.  Hang in there!





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Avatar_f_tn
Thanks for your comments.  Reglan is actually just as safe as any other medication if only taken for the FDA approved amount of time.  I will be switching to Domperidone in October though for my gastroparesis.  I have not heard of Thermotabs.  I have been unable to tolerate salt pills so would this be any different?  I am taking so many pills a day I would prefer not to take 4 extra pills if there was an easier way to do it.  IV fluids seem to help me at some times but other times they seem to do nothing.  Would it be a good idea to undergo autonomic nervous system testing somewhere?
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Avatar_f_tn
Hi again,

The Thermotabs are actually salt tablets too.  I wonder, though, if you might be able to tolerate one kind even if you can't tolerate another- I know that for my daughter we sometimes have to switch brands of supplements. The Thermotabs box says that they are buffered, which might make them easier on your stomach. We order them from Rite Aid online- here's the link:  http://www.riteaidonlinestore.com/qxp149791_333181_sespider/thermotabs/salt_supplement_buffered_tablets.htm

And I know what you mean about not taking more pills- she takes close to 50 a day, which doesn't include the liquids. It's rough. And when she's throwing up, they come back up too...

I know drinking is hard for you, but if you are able to drink can you drink Gatorade? The dr actually suggested putting salt in Gatorade, but my daughter said it was really gross.  And it's interesting that you mentioned that the i.v. works sometimes and not others- the last time she was hospitalized it just didn't turn the flare around like it used to. I don't know why, but I do know that her symptoms have gotten progressively worse over the last few years.

About the autonomic nervous system testing- it was her g.i. who sent her for it, and that's how they diagnosed the POTS. They could also tell that her migraines, that we'd thought were relatively under control, were actually chronic and underlying, and they said that migraines can contribute to dysmotility. They could also see that she was slightly weaker on one side than the other.  Both of those were through the exam, not testing, but they caught them when her regular neurologist didn't...The tilt-table test confirmed the POTS, and they also measured her sweat output, which helped them determine that she had a possible mild underlying autonomic neuropathy.

Does your neurologist specialize in autonomic issues? If not, it might be worthwhile to see one who does. I think it's such a specialized field.  And do you have other specialists? My daughter has a neurologist who works just with her migraines (he says everything else is out of his league), a team of an autonomic neurologist and a pediatric gastroenterologist who specializes in autonomic disorders, a pediatric gastroenterologist who specializes in dysmotility issues, a cardiologist who has a tremendous amount of experience with POTS- and soon, a rheumatologist and a geneticist. I'm tired just writing the list!

Please let me know if you'd like me to send you a list of the medicines she's taking, to talk to your dr about. I keep hearing that what works for each person is different- we're still working on it for her, but maybe there are medicines in our list that your dr hasn't tried yet!

I was just telling my daughter about you- I think it's fantastic that you are learning so much and advocating for yourself. Have you found the yahoo group for gastroparesis? It's a fantastic source of information and support. Here's the link: http://health.groups.yahoo.com/group/gastroparesis/

I hope you're feeling better today- please let me know if you'd like any more input.  :)
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Avatar_m_tn
Hi there,

Just wondering if you have looked into seeing whether you also have Mast Cell Activation Disorder which can cause a lot of GI issues and some feel may be a trigger for POTS? Getting that under control has really helped my POTS issues. The two specialists in the field are Dr. Cem Akin and Dr. Casatells - now both at Brigham and Women's in Boston. For more info, there's a great site a patient put up with lots of info: http://mastcelldisorders.lefora.com
The treatment requires some "dickering" but is quite basic - a combo of H1 and H2 histamine blockers and sometimes Gastrocrom is added to help......
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Avatar_f_tn

Hi there :-)

I'm really sorry to hear about your struggles, and all those tests you had to go through!

What kind of tests lead to your POTS diagnosis? Did you have a tilt table done?
You did not mention any heart rates in your story - Do you know what are your BP and HR laying down and standing up for 3, 5, and 10 minutes? (with arm level with your heart- you can prop it up on books or a piece of furniture)
It is difficult to know if you would benefit form a beta-blocker without knowing this.

*Should I undergo autonomic nervous system testing somewhere (I have been evaluated at Stanford but they don’t have an autonomic lab)? -
I think that if it is a possibility it could be a very positive experience.
Since you seem to be struggling with controlling your symptoms despite all the tests you had done, and the medication you are on, they might be able to give you some insight that non-specialists can't.
They can look at your test results with a different angle, order more if need be, and refine your diagnosis.
It is nice to talk to people that DO understand what a dysautonomia is, and do not look at you like you are coming from out of space :-)

*How do I get enough salt and fluids especially when I am nauseous? -
Lovemygarden is right in saying that the buffeted salt tablet might be gentler on your stomach.
When I'm feeling nauseous I like to drink Perrier water - It helps settle my stomach and does contain some salt.
I also make my own salty drink - I started with 3/8 of a teaspoon in 1 liter of water plus some Crystal Light like flavoring. One with a strong taste camouflage better the salty taste. Now that I'm used to the taste, I increased the salt to 1/2 a teaspoon.

*Would it help to raise the head of my bed or wear compression stockings? -
Raising the head of the bed does help some people. and it is recommended in many medical papers that I have read on POTS. I have never tried it.
Compression stockings are highly recommended, but most people find them hot and uncomfortable. Because of my combined height and weight, I have never been able to find out a pair that does not ride down and make my toes numb.
Be sure to buy a pair that are waist high and at least 30mmHg at the ankles.
Here is a thread about them -

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Compression-stockings/show/936330

Sadly with POTS no two people benefit from the same therapeutics, so it is a question of trial and error.

Good luck and keep us posted.
:-)
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Avatar_f_tn
Hi-

As I was reading the last couple of posts, I remembered something our specialist team said (the ones who made the POTS diagnosis)- they said that if we couldn't get my daughter's symptoms under control, we'd see a metabolic specialist the next time we're there.  They think, based on family history, that it's mitochondrial based, but they don't test for that unless someone doesn't respond to treatment and they need more specific information.  Have your drs talked about seeing a metabolic doctor?

I know it's a lot to take in- just remember, knowledge is power.  You're doing a great job getting information and advocating for yourself- and that's a truly empowering thing.

:)
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Avatar_f_tn
Lovemygarden: how many mg of sodium are in the thermotabs and how many does your daughter take a day?  My POTS doctor said to get 2 to 4 grams of sodium a day and currently I'm only getting about 1.5 grams.  I've tried drinking gatorade and that worked for a while but I have this thing that happens where fluids make me nauseous so then I start associating that drink with nausea and then I need to change drinks.  It's frustrating.  How many liters of IV fluids does your daughter get when she needs them?  I've been getting 2 liters when I need it.  My current doctors are my general pediatrician, an adult regular GI doctor, an adult GI motility doctor, a regular adult cardiologist, a cardiologist specializing in POTS, an infectious disease doctor specializing in mono-related problems, and a general neurologist.  I'm also going to see a geneticist because of the possibility of Ehlers-Danlos Syndrome.  I haven't had a doctor mention yet about seeing a metabolic doctor.  Thanks for sharing the group about gastroparesis!!

NYCpots: How do you get tested for that?  Do you need to colonoscopy to test for it?

Globalhiking: I was diagnosed with POTS just my telling my story and the doctor taking my blood pressure and pulse laying down and standing.  My POTS doctor doesn't believe that tilt table testing always tells the whole story which is why she diagnosed me without it.  My doctor does specialize in POTS but doesn't having an autonomic testing lab.  On Florinef and taking lots of fluid and salt, my heart rates have gotten a lot better but my symptoms haven't gotten better.  Before adding Florinef my blood pressure would be about 105 systolic laying down and standing and my pulse would go from 80 laying down to 115 standing.  However, my blood pressure would drop sometimes into the 90's systolic and it has gotten as low as into the 70's systolic.  After adding Florinef my blood pressure is about 110 systolic laying down and standing and my pulse goes from about 70 laying down to 90 standing.  I've tried adding salt to 1 liter of fluids but I just can't tolerate the taste.  Thanks for your help.
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Avatar_f_tn
Yes, many Drs think that a tilt table test does not mimic real life since, when you are strapped to the table, you cannot use your skeletal muscle pump.
My cardiologist, like yours, told me that he does not need a tilt table test to tell me that I have POTS; he just take my BP laying and standing for 10 minutes.
But he still thinks that for an 'official' diagnosis a tilt table is warranted - By following a protocol it takes away all the variables that can influence the test, and more so if they will test for catecholamines levels like Noradrenaline (Norepinephrine).

About the beta blockers - As you might problably know, they can drop your BP quite a bit even at a low dosage, and have a host of side effects.
Since your SBP at 110 is slightly below 'normal', and your standing HR is 90 (my very humble opinion, and I'm no Dr, is that the Florinef seems to have done a good job at increasing your BP and lowering your HR, and maybe BBs would push you a bit too much over the line), your Dr should be able to guide you as to wheather BBs are the best option for you.
There is a drug called Ivabradine that lowers your HR w/out having a direct influence on the BP, and does not have any side effects like tiredness.

About salt - Have you ever tried a Japanese drink called Miso (it is made out of fermented soya)? You drink it hot like a bouillon, and it has a few grams of salt per portion.

:-)
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Have you tried to see if you can get a Rx for custom-fitted compression hose?  They do custom-fitted if there's anything remotely freakish about your dimensions.  (Yes, I can say "freakish" because I, myself, fall into this category.  And no, I'm not just tall and lovely like you.  I believe one of my legs is an entirely different height than the other.  I forget how the gal at the medical supply store tried to state that politely, but yeah.  :-p  At any rate, if you won't fit properly in the ready-made ones, they literally measure your legs exactly and make a custom pair (or pairs) precisely to your measurements.  It's pretty nifty.  Mine fit great!)

I wasn't 100% positive that this was available on both sides of the pond, but this document seems to indicate that both the US and UK benefit from this service:

http://docs.google.com/viewer?a=v&q=cache:UzDpM3d8z4IJ:www.worcestershirehealth.nhs.uk/Intranet1_Library/foi_internet/foi_files/class_9/Clinical_Policies/300903%2520G%27line%2520for%2520assessment%2520and%2520application%2520of%2520compressio_.pdf+redditch+compression+hosiery&hl=en&gl=us&pid=bl&srcid=ADGEESgLMLPekjv3ARIR47LXy6P9E8H9JRHm6f_cAGYEXS8Kp-ueWSScpJa2u3D08ZKWkmx9Z580FjvcRst9IHFTcnxoq0T7d084HU8Jd58la6rA7tRkVLkUdmSYNPmRSrRG3n3hof7v&sig=AHIEtbQMsrp0sTFQxqisJZCX9vpAwxrY1g

Yeah, I know, massive URL.  But it avoids having to download the PDF, which is a waste just to see that they indeed will custom-measure your legs.  Also, it looks in this document like they only take a few measurements, but at least on mine they measured in like 20 different places up and down my leg, plus each length.  It seemed like a very precise business, and only a specially certified woman there was allowed to do it.  Worth looking into if you haven't and you want to give the compression stockings another shot...
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612876_tn?1355518095
If you have the means to get more extensive autonomic testing, I would recommend it.  I usually say that this is up to the person's preference more than anything else, but I feel a bit more strongly in your case and there are a few reasons why.  You've given a few indications that point to further autonomic dysfunction beyond "simply" POTS.  Which is to say, it seems as though there may be things that further testing could pick up on and possibly lead in different directions that might help better indicate which treatments would be optimal for you.

One thing that you mentioned is pupillary dysfunction, which can be specifically assessed in an autonomic lab.  Urinary symptoms are another autonomic red flag, as are the extensive digestive system issues you've been having.  I also noticed that you mentioned flushing, which piqued my interest as well in this regard.  

I know that it would be a long trip for you to get to one of the hospitals that has a full autonomic testing facility, but if it is something that you have the means to do, I think it might be very valuable in your case.  
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Avatar_f_tn
globalhiking: Ivabradine doesn't appear to be available in the US.  I haven't tried miso, but I'll try it and see.

Heiferly: I haven't tried getting a Rx for custom-fitted compression hoses, but the ones that I bought seem to fit well but I haven't had any benefit from them, so I don't know if it's worth it.  I might try it though.  I hadn't thought of the possibility that I could have something different than POTS, but it seems like autonomic testing might be the right thing to do.  Early this year I tried to go to the Mayo clinic but I got "rejected" probably because Stanford is right in my backyard.  My mom was thinking of having us try and go to Vanderbilt for testing.
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Avatar_f_tn
I did a laying, sitting, standing blood pressure and pulse measurement today and was wondering what someone thought of this.  This is on florinef and taking lots of salt and fluid.  I assume this would all be a lot worse without the florinef.

Laying down: bp 110/61, p 62
         Sitting: bp 104/64, p 74 (immediately)
                    bp 109/64, p 70 (1 min)
                    bp 107/66, p 73 (3 min)
     Standing: bp 109/71, p 90 (immediately)
                    bp 109/78, p 96 (1 min)
                    bp 117/77, p 85 (3 min)
                    bp 119/69, p 87 (5 min)
                    bp 112/85, p 97 (10 min)
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Avatar_f_tn
Hi there :-)

I'm sorry to have recommended Ivabradine - I did not know that it wasn't available in the USA.
Here in the UK it has become quite popular with POTS sufferers, but it did not work well for me.

Your BPs and HRs are quite good on the Florinef plus salt and fluids, although 97 standing might be a tad fast compared to your 62 laying and 73 sitting - Do they approach what your normal would be?
How do you feel after standing for 10 minutes?
Have you talked to your MD about the BBs?

:-)
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Avatar_f_tn
Heiferly,

Thank you SO much for this looong URL :-)
Funny enough the document is from the NHS South Worcestershire, exactly where I live!
Did you know that? Are you psychic ;-)

I will certainly look into having a custom pair fitted.
I'm seeing my GP next Tuesday.

:-))
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Avatar_f_tn
These heart rates are better than they used to be without florinef.  For a while I was having a resting heart rate in the 90's too.  After standing for 10 minutes I feel dizzy and short of breath.
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612876_tn?1355518095
LOL, Oh, if only I were psychic!!  You have Redditch listed on your MedHelp profile.  Being that I know *nothing* about the NHS, I searched specifically for Redditch as part of my search string so that I would (hopefully) find something relevant to you.  I figured if you lived in Scotland and I found something in London, for example, that wouldn't be very helpful.  

Good luck with the stockings.  I hope you can get some custom-fitted ones and that they work out as well for you as they have for me.  :-)
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612876_tn?1355518095
Although it appears that your BP and HR are under good control with your current treatment, I would definitely discuss your continued symptoms with your doctor and possibly consider seeking more extensive testing.  Have you had a cardiopulmonary stress test?  (Excuse me if I already asked you that; I have brain damage to the memory part of my brain.)  

There are tons of different avenues that can be explored, from autoimmune to mitochondrial disorders, and comprehensive autonomic testing is a really good starting place since you already have the known POTS diagnosis.
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Avatar_f_tn
I had what I think would be called a cardio stress test (no pulmonary) in early 2007 because I was having a sinus tachycardia at soccer practice.  All it showed was that I had a heart rate up to 210 when I exercised.  I haven't had one since I got mono and all of this started, but I have had a full echo.  I'll probably go somewhere to get autonomic testing, but I just have this fear that I'll go somewhere and they will say that I don't have POTS (because I've never had any testing to show I have POTS) and they don't know what I have.
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