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A New Poster, Possible Dysautonomia? A Young Mans Nightmare


dale23
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Hello everyone, I just want to say that im probably going to be forgetting a few things in this post but I want to just get my general symptoms, life etc as it has been the last 3 years.

I am now 24 years old,male, from the age of 12-18 I was an active soccer player with little to no issues regarding my health. At about age 21 I began to have severe stomach pains, and runs of tachycardia that were unexplained by anyone. Late age 21 I went to my doctor and my blood pressure was 156/85, I was put on Hydrochlorothiazide 25 mg, several months later I began to have the extreme tachycardic attacks where I would be laying down and suddenly my pulse would jump to 150-160 bpm. Eventually I went to the hospital and my blood pressure was an incredible 198/93, now I was put on another drug "Losartan 100" around this time I had also been experience shortness of breath accompanying my tachycardic attacks. I was sent to a cardiologist who did a stress test which was normal, he also did 2x echocardiograms and unfortunately he says I have very mild Left Ventricular Hypertrophy which is what can happen if you have hypertension for awhile, however he assured me it wasn't significant enough to worry about.

I still had no answers for my tachycardic attacks. At this point going up my stairs to my apartment was getting really hard as my HR would easily jump to 170-180 and the shortness of breath was really bad. It seemed that going up stairs would really increase my heart rate to an exaggurated level. I remember getting a 140 heart rate climbing stairs, but 180 and with chest pain, no way. I am guessing that these tachycardic attacks probably began several months after being diagnosed with hypertension, but my cardiologist assures me there is no connection. Fast forward to 23 and at this point im tachycardic doing just about anything, getting out of bed, climbing stairs, bending over etc. Finally my primary care doctor referred me to a very nice and very understanding Electrophysiologist, i'll call him Dr.E. Dr.E told me that he believed I was suffering from Supraventricular Tachycardia and that he could treat it if he was able to catch it, he gave me a 48 hour holter monitor and hoped for the best. Unfortunately the holter monitor didn't catch any SVT's, it did however catch random runs of sinus tachycardia going all the way up to 180, for instance waking up my heart rate was 160. As much as I believe Dr.E could help me he really didn't have much to say "Sorry Dale, you do seem to have some sinus tachycardia but no SVT or anything that would cause concern, we can put you an a beta blocker though" at this point he put me on Toprol XL 25 and the tachycardia lessened.

Around this time "this is embarrassing" and this occurred BEFORE the beta blocker I began to become impotent. For a 23 year old guy to suddenly not be able to get an erection is a pretty terrifying thing. My glucose is normal, testosterone is normal and the doctor can't really explain why I am having this problem. It was at this time that I was also put on Xanax 0.5 twice daily for my anxiety, it has helped admittedly and the Toprol seems to control my erratic heartbeats most of the time, but i'd really like to get off the Toprol without having a problem. I knew that the HR wasn't connected to anxiety like my doctor suggested, I tried going off the Beta blocker but remained on the Xanax. I still had the extreme tachycardic attacks I was just less fearful when they were occurring because of the Xanax. I am back on the beta blocker now, otherwise I couldn't do anything. So I essentially proved to myself that the tachycardic attacks are NOT anxiety related.

My friend on another website actually saw my symptoms and suggested I come here. My main symptoms I guess are exercise intolerance "I can walk, bike but cannot run, jog", erectile dysfunction, random tachycardic attacks, exxagurated tachycardic response to exercise "180-200 climbing stairs without Toprol, 150 walking without Toprol". Shortness of breath is also a symptom that comes and goes, so I haven't paid much attention to it, all Pulmonary Function tests were normal, o2 levels normal usually around 98-99

I guess his suggestion was the the impotence combined with the tachycardic attacks that seem to get worse when climbing elevated things like stairs may suggest some sort of ANS dysfunction. Anyway I am sorry for rambling here, it's hard not to cry "I know that sounds pathetic" when you are dealing with these issues at the young age of 24. Im really hoping someone here can provide some insight and suggestions as to what may be going on here, if this might be some form of POTS or another form of NS dysfunction. He seemed to think you would be able to help.

Thank you all for your time,

Dale

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It doesn't sound like you've had a tilt table test and/or autonomic testing. That would be where you should start. That way you can find out if you have POTS. It's best to try to get in with a doctor who is familiar with POTS. There have been lots of discussions on tilt table test and what to expect. You can do searches on the forum and find a whole lot of information that way.

The one thing that especially stands out is that with even waking you have the high tachy events. Some of us for sure do this. Since that is not a postural issue but some other sort of thing causing the surges. I'd suggest looking into mast cell activation syndrome (MCAS). Again, there is lots of info on here about that. If this is a problem then beta blockers make it worse. There are meds that can be used like clonidine to bring down your blood pressure that won't cause a mast cell release. But, many of us are finding that using the meds for mast cell release and getting that under control is helping the high blood pressure and heart rates.

So sorry that you at such a young age are having these issues. I totally understand as I've had some sort of dysautonomia for the majority of my life. Lots of ups and downs. It's just very scary when you don't know what is really wrong with you - because you don't know what kind of battle you are fighting. But, hopefully, others will chim in here and give you a direction to start looking into. There are some really good people here and they provide loving guidance and support.

Issie

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Your first paragraph somewhat describes my son, except his illness started when he was in the 5th/6th grade(slow progression). He is now 18. He played soccer 11 months a year, and his first symptom was stomach pain/abdominal pain. He has been diagnosed with POTS and MCAS( as Issie described above.) I agree with Issie, that autonomic testing , Tilt Table Test, would be beneficial.

Through testing, they also discovered he does not sweat anywhere on his torso. I sometimes wonder if that could have been caused from goalie training(back up goalie, usually a forward), where the soccer coach continually kicked a soccer ball at him and he had to stop it, usually with his torso. Impact after impact.

This is a good place to gather information and get support.

Christy

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Hi Dale,

Welcome. Sorry you are having to go through this. As the other ladies said, it sounds like a tilt table test and autonomic testing is in order. You can check the dinet.org home page for the "Doctors List" which is organized by country/state. Or if you are comfortable, you might want to let us know what state you are in so people can give you doc's names.

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What is your typical heart rate when totally calm, laying flat in bed? Any idea how much it goes up when going from laying down to standing or what your daily average heart rate was from the holter test? As has been suggested you should definitely try to see an autonomic specialist and get a tilt table test. I would also start reading up on autonomic disorders as much as possible so you can be prepared to ask questions and get the best treatment possible. Many doctors have little knowledge of these types of illnesses so sometimes you have to take charge of your own treatment.

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That hypertension bothers me significantly, have you been tested for pheochromocytoma?

What are your symptoms? Do you feel dizzy, lightheaded etc?

Have your doctors suggested going to a place like vanderbilt or Mayo where they can do some vigorous testing as your case does not seem typical at all.

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That hypertension bothers me significantly, have you been tested for pheochromocytoma?

What are your symptoms? Do you feel dizzy, lightheaded etc?

Have your doctors suggested going to a place like vanderbilt or Mayo where they can do some vigorous testing as your case does not seem typical at all.

Thank you guys so much for all the responses so far.

Hey Jangle, very interesting question. One of the urine tests that I did came back HIGH VMA which would suggest Pheo, but after 4 more urine tests it was normal every time. I also had a urine test that showed HIGH CORTISOL but once again on repeat tests everything was normal. Believe me it bothers me too hehe.

I do have other symptoms, but the ones I listed are really the most troublesome.

Unfortunately no one has suggested I go to Mayo or Vanderbuilt, my location is New York City so I was hoping that at some point I could go to Beth Israel, but the doctors just keep giving me the urine tests for VMA/Cortisol every month or so and blood tests for metenaphrines. So far only 1 positive VMA test, ive also had kidney ultrasounds, the next test my doctor wants me to do is a Nuclear Scan of the kidneys.

I totally agee that the hypertension is bothersome, it scares me every day I just want to fix it. :(

Thank you for all of the awesome responses so far, keep all suggestions/responses coming!

Dale

PS- And you guys are correct so far I have done no autonomic testing. Before the Beta Blocker my resting HR was about 90-95 and upon standing it would easily jump to 120-130 and then fall down to about 100 after a few seconds.

Also before the beta blocker I would get really itchy legs/feet on standing.

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If you are in NYC you might consider trying to schedule an appointment with Dr. Tullo in West Orange NJ. He specializes in dysautonomia and is likely easier to get into then the NYC docs. I just scheduled my first appt with him in 3 weeks, but several others on the forum have seen him and had good things to say. The website www.njfaint.com

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Dale,

I am sorry to hear about what you have been going through. If anyone can sympathize it is those on this forum. We know what that tachycardia can feel like and how challenging your past few years have been. As with others, i agree, a tilt table test needs to be done. Also, there is a "poor man's tilt table" where lying, sitting, and standing blood pressure and heart rate are recorded. Dramatic changes in HR or BP can be a sign of pots. This is done by electrophysiologists. Also, in regards to jangle's response about a pheochromocytoma, there is a also a blood test to detect it though i think i remember reading that the urine test is more sensitive. As far as kidneys are concerned, pheochromocytomas do not necessarily have to be in that location. They can be somewhere else in the body--something to consider when limiting things to kidney scans. "Because chromaffin cells also are situated in nerve tissue throughout your body, pheochromocytomas occasionally arise outside of the adrenal glands (paraganglioma). Common locations for paraganglioma include the heart, neck, bladder, back wall of the abdomen and along the spine.http://www.mayoclinic.com/health/pheochromocytoma/DS00569/DSECTION=causes" The test for these is urine catecholamines and plasma catecholamines. Another thing is that there is a type of pots called hyperadrenergic pots that can cause high blood pressure. Man i feel for you, when my pulse and bp are high it feels like i am knocking on deaths door, only for me it only lasts for minutes. I know you want to get off the beta blocker, but i think it is important to assess quality of life in that idea. I was against medicine for a long time, and for me, it makes my life much more liveable. You may want to look into SSRI's as they are less addictive than xanax and can help block the adrenergic (adrenaline) pathways.

When people talk about autonomic testing, there are specific tests they are referring to. Some can only be done at autonomic testing centers like vanderbilt and mayo clinic. However, those that can be done outside of the aformentioned clinics are done by a neurologist who probably will have never heard of pots. The types of test that are done for this sort of thing are sweat tests, QSART, and vagal reflex. As far as i am aware, autonomic testing really can only detect that you have pots if the tilt table test cannot. It is not going to change your symptoms, although it may change your therapy, and thus provide more relief in the long run. Another reason these tests can be important (QSART) is to rule out neuropathy that can be continually damaging to your nervous system. I believe there is a dr. up in NY who specializes in pots, its either julian stewart or phillip low i believe, not sure.

Pots is more than just heart rate, although it is definitely the hallmark symptom for some and the method of diagnosis. Here is a list of symptoms that we experience via a poll http://forums.dinet.org/index.php?/topic/22986-the-symptoms-we-get-from-pots/#entry214229.

If i were in your shoes, these are things that i would want done:

-Tilt Table Test

-Event Monitor (different than a holter or 24 hr. monitor in that it is worn for a month and can provide a different picture to cardiologists)

-Brain MRI (Specifically the brainstem, where heart rate, blood pressure, and arousal are controlled)--not to scare you but the varying levels in your blood tests of other issues may signal a higher disease process than just the adrenal glands.

- TSH, PTH, T3, and T4 blood tests--to check out your thyroid--follow up on the low cortisol

- Plasma and urine catecholamines also urine metanephrines to test for a pheochromocytoma

- Comparative Metabolic Panel--though i would sincerely hope that this has already been done to check for normality in sodium and potassium levels etc.

- CBC (complete blood count) to rule out polycythemia--though i would hope that this has already been done as well

-VIP (vasoactive intestinal peptide)

-Arginine Vasopressin

Your doctor will most likely not want to do these tests and many of them are out of the scope of cardiology. But the bottom line is, they do not know what is causing your symptoms and remind them of that when they refuse your requests. Have a reason why you want those tests done and make it a good one. All of the aforementioned tests are not unreasonable for the symptoms you are experiencing.

Slightly abnormal blood tests can be due to the collection process etc. but if they were abnormal, that is a good place to start. Are you urinating after these high bp, high hr events?

As for tears, i cant count the times i have cried over what i have, pots. We know how you feel.

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Hi and welcome. You do sound somewhat atypical perhaps for POTS- but atypical doesn't mean you don't have it. (I have atypical symptoms too.) Also, under the big umbrella of the Dysautonomia diagnosis, POTS is only one subtype so as others have said, it seems autonomic testing would be in order.

Julian Stuart is also in NY I think and I believe he will see people up to the age of 29, so you might want to look into seeing him if that's an option for you.

Good luck! Sorry to hear you're having so many challenges.

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Welcome to this forum. I'm so glad you are here.

No, you do not sound pathetic and I can totally relate to where you are. At times in this journey I've had problems with sexual function and it makes sense bc it is controlled by the ANS. I do believe the worst part of this journey is knowing that there is something wrong and the doctors can't help. I really agree with all above - great advice. I am with Issie and ChristyD on ruling out hyperadrenergic POTS with Systemic Mast Cell involvement and it sounds like you've already ruled out Pheocromocytoma but having a full workup at a major autonomic lab would probably give you peace of mind.

You may also want to watch the "Changes: POTS" Video- there is a link on one of these forums- just search for video in "all forums". It is very educational when you are trying to get your head around Dysautonomia.

Keep us updated w your progress.

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