Is This Pots?

[bond.007]

Hi,

My 22 year old son has been unwell for 15 months. His symptoms came on suddenly. He was in several hospitals with numerous symptoms.

He had tachycardia, crushing pain in heart area, crushing pain in kidney area, delayed urination, flushing , extremely sensitive nerves, severe sweating, feeling very hot yet having a normal temperature, dilated pupils, breathlessness, sensitivity to cold and heat, body tremors, severe indigestion, bloating and various other symptoms.

He was diagnosed with POTS after he went from a supine position to a sitting position while connected to a heart monitor in March 2010. His heart beat went 3 times faster instantly. As he has difficulty travelling by car ,due to nerves in his heart area becoming super sensitive due to micro vibrations on the road and causing crushing heart pain, he has been unable to return to the consultant who diagnosed his condition.

We recently found a consultant locally who performed a tilt table test. This was performed with my son wearing support tights. The consultant was aware of this and said they would not influence the result. This showed my son to have very high blood pressure, fast heart rate instantly on any movement. He has equally high readings when lying flat as when tilted to an upright position. Consultant was looking for syncope to occur and was not familiar with results he found. The most comfortable position for rest is to lie with 4 pillows behind his head. He needs to rest three times a day for 2 hours at a time. His whole life is at a stand still. My son also has pooling in his limbs when he showers. He is also super sensitive when the water touches his body. it can cause the crushing heart pain. Top half of his body goes very pale and bottom half goes dark red.

He takes salt on his food, wears support stockings, wears ankle weights for some periods daily, eats little and often, drinks lots of water, drinks isotonic drinks, does toning exercises to prevent blood pooling in lower body. He does not take dairy products or tea or coffee.

Does anyone have similiar problems with high blood pressure and tachycardia when lying down and also when standing? The consultant who performed the tilt table test said that with POTS symptoms go away when you lie down.

I would really appreciate any help.

Many thanks for all the wonderful information on this site. It has been of enormous help to us.

[HopeSprings]

I'm sorry about your son. It sure sounds like POTS or some form of autonomic dysfunction. Are you saying he has a high resting heartrate and then it jumps up from there when he goes upright? If it goes up at least 30 beats (or I believe over 120) it meets the criteria for Orthostatic Intolerance. I do think the heartrate is supposed to come down at least somewhat when laying down, however. Sounds like he is taking all the right conservative steps. Maybe medication would help? I was just curious since this the symptoms are relatively new... were there any precipitating factors that you can think of? Any injury, trauma, illness, new medication before the symptoms began? I just always wonder how a perfectly healthy person can suddenly develop all this dysfunction out of the blue.

[toddm1960]

For starters wearing support tights will have an affect on the test results, you should also be off all drugs that slow or speed up your HR. Naomi is correct if your HR increases by 30 bpm or goes over 120 in the course of your test......it's POTS. Then it's a matter of trying to find his underlying cause. In some cases if you can find this and treat it you'll have some symptom relief, it doesn't cure it but it can sure make life a little easier. One thing in his favor is the age he came down with it, alot of research points to this age group of as having a good recovery rate. Good luck and I hope you can find somethings to make him feel better.

[Csmith3]

You are describing aspects of autonomic dysfunction but my instinct says that either there is more going on than POTS or it isn't POTS.

I expect you already know that you are listing quite a lot of symptoms in common with autonomic neuropathy. POTS can be a cause, but there are many more possibilities. If you haven't already, I would visit a neurologist who has expertise in autonomic dysfunction.

As POTS is a syndrome, there is variation in symptoms and it is possible to see subsets of people on here experiencing similar symptoms. I have different symptoms from your son (no hypertension or tachycardia when lying down) so I'm afraid I can't offer any specific help. I would also echo previous comments that sudden onset of such severe symptoms is uncommon unless there has been significant trauma.

My heart goes out to you and your son who must have had a very difficult 15 months. Best wishes in finding the cause as soon as possible.

[bond.007]

Hi Naomi,

Many thanks for your reply.

[bond.007]

Hi

[bond.007]

Hi

[Csmith3]

Hypertension is uncommon in POTS but is possible.

The other thing that is odd is the kidney pain. Has he sustained kidney damage? This isn't something that I would associate with POTS and makes me think something else is the trigger to the autonomic symptoms. Could someone check that out because that might lead you indirectly to the diagnosis.

I wouldn't place too much weight on the view of the neurologist. Unless they have the specific expertise in the area of interest, the views don't mean much more than they don't know the answer. I saw 7 neurologists before being diagnosed by one that was knowledgeable about dysautonomia and I have classic symptoms of POTS.

I feel for you being left to read up on POTS and make a DIY diagnosis.

[toddm1960]

I'm not so sure hypertension is rare in POTS, there's just way less research done on us with orthostatic hypertension. I think you'll find it's about 50/50 hypotension to hypertension. Many on this forum also fit into multiple categories, they have POTS along with PAF

[firewatcher]

Bond,

The sudden onset and kidney pain make me wonder about pheochromocytoma, an adrenal tumor.

Wiki link to pheo

I have hypertension with my POTS, but my HR and BP plummet when I am flat. An endocrinologist can test for a pheo, but you need to get him to a neurologist as well. Good luck and keep us posted!

[arizona girl]

He has had all the cardiovascular and renal utltrasound that shows no defects in those areas, right? The abnormal tilt was the main finding? His symptoms do sound like an autoimmune autonomic neuropathy. Has he had screening for small fiber nerve damage yet (those are the autonomic nerves)? A skin biopsy and qsart test can show if there is damage to those nerves. His large fiber nerves have been tested and he has had CT of the brain to rule out MS? Also does he get sick with infections or feel sick and not have a real fever but is hot to the touch? I' m not sure where you live, but not all neurologist are the same. The type of neurologist that is the best for this type of screening is one who specializes in autoimmune neuromuscular illnesses. A good one can rule out many rare conditions that aren't commonly thought of. More often then not Pots is not an end diagnosis, but can be caused by many illness. The fact that he goes up on standing and is sensitive to many stimuli, point to the need to look deeper.

If you haven't taken the time yet go to dinet's main page and read under mechanisms and causes, you will see many different reasons you can have pots symptoms. Read through the and see if any fit your son. Improvement can come if the right cause is found. Something like anemia can be treated and cured, other conditions are life long but can be managed. If your any where near the west or southwest USA, we have several doctors that can do the right screening or may be able to refer you to someone in your area.

You are right to keep pushing for better answers, and if that takes seeing new doctors, then don't feel bad about needing to do so. You are doing the right thing for your child. There is also dynakids website, you can look at too. There are a lot of parents on here with kids the same age as yours. So you should get lots of suppport here. If you'd like some doctors names, just ask.

[toddm1960]

Firewatcher that might be a very good call on pheochromocytoma......you're one smart egg. Hey you want to take my case over

[issie]

Has he been checked to see if he has Ehlers Danlos? The laxity of connective tissue and circulation issues that go along with this could cause some of the problems. Does he snore? I also have sleep apenea - there are two types. One is obstructive the other in the brain. The autonomic dysfunction can contribute to this and it is possible to have both kinds. If he isn't getting enough oxygen to the brain when he sleeps - this could be part of the problem. Sometimes, I have to use oxygen with a CPAP always to sleep and still have to be inclined. You can purchase an oxygen finger meter and it will show his oxygen levels along with his pulse. This is helpful to figure this out - if he can't go to a sleep clinic. They are sometimes bringing the sleep clinics to a persons home - so that is a possiblity. Look into the hyperadrenic type of POTS. Also, mast cell activation disorder. I just found out that there is a third type of POTS and it is a combination type with extremes in both directions - this is a new thing to me. I wondered why the regular POTS treatments didn't work for me. If he is hyper POTS the salt loading might not be the best thing to do - that could raise his bp even higher. It also creates more fluid in his body and could contribute to more swelling of his extremities.

Here's hoping for brighter tomorrows!!

[issie]

Another possibility is food allergies. I've been leaving off glutten, dairy and sugar - since these can trigger an autoimmune reaction. Autoimmune problems can be found with POTS patients too. I'm doing better since leaving these off. I figured out that allot of my hot flashes and tremors were/are related to certain foods. (All this time I thought it was hormone related. It wasn't.)

Just another side note - salt is really hard on the kidneys.

[Lovebug]

I have most all the symptoms you listed for your son with the exception of a few. And I'm one of those Dysautonomics that get tachy & high BP when upright. Before I was diagnosed, I had episodes (I call storms) where I had severe abdominal pain (sometimes accompanied with chest pain), pain in my flank (near kidneys), tachycardia (140), high BP (150/110), & extreme anxiety. They were almost like adrenaline surges and I could be lying down when I had them. My doc suspected a Pheochromocytoma but that was ruled out. When I finally got diagnosed, my cardiologist suggested fluid loading and a very, very low dose of mild beta blocker (inderal). I quickly improved. I also had a low Vitamin D which made my Fibromyalgia severe so taking that helped. I also went to a chiropracter & it helped some. Now I'm doing much better. I also take Celexa (very low, low dose) to help with my GI symptoms (mainly the pain) and it works. Good luck to you and I'm wishing for a speedy treatment for your son! Please let us know how it is going.

One thing you should understand is that Dysautonomia is the "mother" or "umbrella" of all the autonomoic diseases. Within it you can have differnt types of problems but they are all related to Dysautonomia. For example, I have: GERD, IBS, Fibromyalgia, Chronic Fatigue, POTS, & OI. Some things overlap and it can be confusing. But it sounds like your son definitely has Dysautonomia with a component of POTS/OI. With his GI disturbances...I'd say IBS also. Just remember that anything the autonomic nervous system controls can be affected (hormone levels, digestion, vital signs, brain function, basically...any & everything).

[bond.007]

Thanks again.

Edited March 22, 2011 by bond
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[bond.007]

Thank you.

[bond.007]

Many thanks for your reply.

[Godsgal]

I would get him the full work up. Ask the doctor about CSF leak since you mentioned he had fractured his neck. Lots of things can cause these symptoms. Seek out every professional you can.....that's what I did until I got answers. I saw immunology, rheumatology, several neurologists, cardiologist, electrophysiologist, endocrinologist. And sometimes our condition is worth going straight to the horses mouth for answers.....like to the mayo clinic, Vanderbilt, some tertiary care place that knows about this condition. It's exhausting but his health is worth it. Carotid artery ultrasound is sometimes done with the really high blood pressure issues. Have them check for Carcinoid syndrome too.

Prayers for you and him,

Jared

[bond.007]

Hi

[bond.007]

Hi

[bond.007]

Once again thank you issie.

[bond.007]

Hi Lovebug,

Thank you for your help.

It feels as if a tiny surge in adrenaline causes an extreme reaction in nerve endings.

Edited March 22, 2011 by bond
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[bond.007]

Hi Godsgal.

Many thanks for your help.

I will certainly take your advice and have the checks made.