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Kitlyn????????
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Kitlyn????????

Hello Kitlyn. I was just wondering if you were still out there and saw my post in response to yours under my page on Dysautonomia?? If you truly want to seek help, post to Ryan (RCA619) on the Anxiety Support Forum. I also have an entire topic discussing the problems and the results from the neurologist/physiologist there. Ryan has helped me to open my eyes to the possibility that I am not suffering from anxiety only, and particularly due to my reaction to the SSRI meds. he recommended that I may have some varient of dysautonomia and to get checked for it. If you haven't already, please check out the topic there, or start your own topic so Ryan (RCA) and I can further assist you. This is not the place for people dealing with panic attacks and dysautonomia. I usually get better support and comfort there too, esp. with Ryan there, who has opened my eyes to a lot of things.

~Crystal
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Hya : they had reset my password and i couldnt; get in.. i did see your post to me about the dsyt,,and MVP etc.. Yes as i was saying ..i have had the awful palps since 29 and am presently on atenonol since that age approx.. i started on 25 and went quickly up to 50..and then two yrs ago to the whole 100 mg.. I have been a smoker since age 15.but ceased to smoke at age 20 but then started again full throttle at age 35 . Regular. I have since quit this time for good.. after a bad scare w tachycardia for a few seconds in April. I have not been well this yr ..as you may see my other postings here since neuro had found two spots on MRI on my brain,,,and after that my heart rate increased alot.. so much so i stopedmy social drinks on weekends.. which i miss terribly. I do think that i may have dyst..i know i have trace regurgitation.. but not much prolapse , normal heart and no enlargment. My mother and sisterboth have a heart murmer but it has never bothered them at all like me. No meds for it. I was always on valium at 20's and took a low dose for anxiety.. but then was swtiched to clonazapam 0.5 mg  afew yrs later works good for the anxiety yes it does lessent he palps if in the rt dose they uped it to two of those 0.5 mg a day but i hate to take so much. I am  avery highstrung and talky gal ,  like my father was .. highstrung and always been nervous. I thank you from the bottom of my heart for your caring and posing.. lets contimue to chat ...peace k
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183202_tn?1219857259
Hello kitlyn,

This is what I posted to you before (which I take you never read):

I wish I could guide you in the right direction. If you have indeed been suffering this for many years it is a possibility you could have some form of dysautonomia. Whether or not you have the MVP varient is dependent on whether you truly have full blown (primary) Mitral Valve Prolapse or just have some slight prolapsing of the valves. It is more common in those with primary Mitral Valve Prolapse who have received their problems hereditarily.

Yet it is still possible you could have a version of dysautonomia. You could always give a beta-blocker and a benzo. combo. a try. It blocks the beta receptors to the heart, brain, etc. and is very good for sufferers of dysautonomia. I'd recommend either a non-cardiac specific one like Inderal or a cardiac specific one like Toprol XL or atenolol, depending on what your primary complaints are. If you get mainly chest palps, chest pains etc., a cardiac specific one will suffice. I'd also recommend getting on a longer-lasting benzo. Lorazepam works great for me, and clonazepam (Klonopin) is another GREAT benzo. to stop the release of adrenaline through the body. The two work drugs (the benzo and beta-blocker) work in sync to alleviate dysautonomia symptoms. Alone they don't do diddly squat. It will help a little, but not get rid of the symptoms completely.

I see you are on atenolol now?? that is one varient of a cardiac-specific beta-blocker. You could always just try getting a benzo. in there for the remaining symptoms. Start off low, though, and work your way up. I don't recommend Xanax at all though. I heard it can sometimes agitate dysautonomia symptoms, and it is not a longer-lasting benzo. like Klonopin, or even Ativan is preferred since it targets anxiety and adrenaline releases specifically. So give one of those two a try (if you want). :)

I am on a cardiac-specific beta-blocker (Toprol XL) and Lorazepam 2 MG TID, and it works great to help restore the balance of my ANS. I still get the increase in HR and lower BP upon standing, yet it doesn't bother me and I never notice it. The only reason I know I have it is due to my visit with the Dysautonomia specialist. I may switch to Inderal from Toprol XL if my symptoms ever get worse again, and the Toprol XL and Lorazepam alone isn't enough.

If you could find a doctor, even a cardiologist or neurologist in your area who is knowledgeable on the field and can get you the proper testing and diagnosis to see if you have dysautonomia, that would be wonderful!! I luckily had one right in my area, and the only other specialists I know of are in the Cleveland Clinic and Mayo Clinic (but it is EXTREMELY expensive to get in!!).

You could also just have panic attacks, which can cause increased HR and syncope/near syncope. But you should get tested first to find out for sure.

I wish you luck!!! My shrink (Psychiatrist) finally believes me when I mentioned to him that I believe I have Mitral Valve Prolapse Dysautonomia!! He took it from a medical standpoint and agreed with every word. He doesn't know TOO much about it, but he did not disagree in my research and findings based on my symptomology and gut instincts.

Are you seeing anybody for these problems now?? If not, I HIGHLY recommend it!! I wish you luck as well!!

~Crystal
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183202_tn?1219857259
Kitlyn: Here are the posts from the Anxiety forum in regards to the same topic I posted on here. I have been talking with another person who has been diagnosed and is well-versed in Dysautonomia on there named Ryan. He is your best bet to go to if you think you may have MVPD (Mitral Valve Prolapse Dysautonomia). However, as Annie stated, there ARE other causes for dysautonomia, and if it turns out you DO have dysautonomia, then it is probably another varient aside from MVPD, perhaps POTS or some other problem.

Yet the spots on the MRI/CT Scan are also very concerning. What did the doctor have to say about it?? Did they suspect something else could be going on?? MS (Multiple Sclerosis) can also cause this. Or you may be a candidate for Lyme, which causes MS type lesions, and many sufferers of Lyme go misdiagnosed as having anxiety and panic attacks as well, and also experience heart palps., tingling sensations, lightheadedness, etc. I would get these checked out: request a Lyme test - in particular the Western Blot test-to rule this out, as well as any tests for MS.

If these can be ruled out, and the lesions are benign, then the cause is likely anxiety/panic and possible dysautonomia, esp. if you have syncope/near syncope when standing.

~Crystal

Anyway, here is the convo. between Ryan, a sufferer of Dysautonomia, and myself on the Anxiety forum. I recommend posting to him on there more so than on here. He can also help you along (aside from myself) on this:

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RCA7591
6/4/2007
C4  .

Hi Crystal,

Here's my objective apprasial of your situation:

(1) The doctor can not objectively rule out MVPD, as he did not review your cardiac work-up's. The ECHO would be most specific to prove that you indeed have MVP. Although you may indeed have MVP, it may not be the cause of the Dysautonomia (there are dozens of other etiologies).

(2) The doctor cannot objectively include POTS as a diagnosis based on your BP and pulse readings upon assuming the erect (standing) position. The vast majority of persons will show similar findings, PARTICULARLY those persons who take beta-blockers and similar antihypertensives.
The only objective means to include POTS as a diagnosis is to perform a tilt-table test, which this doctor apparantly was reluctant to do. Yes, syncope (passing out) is a possibility, but it isn't dangerous when performed in a controlled environment. I would strongly recommend having the tilt-table test performed.

(3) Your past history IS IMPORTANT! Your pre-medication history would give a greater insight into what form of Dysautomonia you were/are suffering from. Dysautonomia is mainly a clinical diagnosis, meaning that your subjective symptoms are the main determining factors for treatment. The goal is to TREAT the symptoms. The underlying cause for most forms of Dysautonomia have no specific *cure*, so the focus is on treating the symptoms and improving the quality of life.

It is of my strong opinion that you are suffering from MVPD.

My suggestions to you:

(1) Don't give up on this doctor yet. Obtain copies of your cardiac work-up and other laboratory findings and present them to the doctor at your next visit.

(2) If after reviewing the "proof" the doctor is still convinced that you have POTS, ask him to prove this with a tilt-table test challenge. If you pass the tilt-table test, you are unlikely to have POTS. If you flunk the test, you likely have POTS (but not always).

(3) Let the doctor diagnose and treat you, even though you (and I) are reasonably certain that he is wrong. If his treatments fail, he will need to look into alternative causes of Dysautonomia.

* Do not be persuaded to take any SSRI/SNRI drug, ever!

You may not realize it, but he DID take you seriously. The fact that he did not dismiss your symptomatology as "panic attacks" is a very good sign. Thus he feels that you suffer from a real physical condition. Now, he just needs to figure out which form of Dysautonomia/Autonomic Dysfunction you have. Try to be patient with him while he figures it out (he just met you).

Also, keep in mind that any prolonged illness may present with symptoms of panic/anxiety/agoraphobia, all secondary to the underlying disorder. These will improve once the underlying disorder is treated. Dysautonomia is almost always misdiagnosed as "panic disorder", but the treatment for panic disorder alone will not treat true Dysautonomia.

In the mean time, if your symptomatology worsens, I'd recommend the Inderal 40 mg BID in place of Toprol. As suggested before, I would also obtain Klonopin 1mg BID from the shrink. This is the treatment for MVPD.

--Ryan--


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DragonTU84
6/5/2007
C5  RCA (RYAN)


Hello Ryan. Thanks again so much for your support and your advice. In regards to your points/notes:

1) I indeed DO have MVP, as I have been diagnosed by two different doctors/technicians who performed an ECHO on me: One in August (5th) 2005 and another in December 19, 2006, more as a follow-up ECHO due to the recent incidents/symptoms which struck in October. I agree with you that the doctor cannot rule out MVPD as a diagnosis. Yet I think due to the fact that he discredited that I even had the full-blown MVP, he is thus sort of looking for another possibility (another dysautonomia) causing my symptoms

2) I was reading online that POTS can sometimes accompany patients with MVP and MVPD, since it is even uncertain as to whether Postural Tachycardia Syndrome is a form of dysautonomia in and of itself or if it is just a varient of a more complex form of dysautonomia, maybe in my case MVPD??

Also, due to the low blood volume that sufferers of MVPS/MVPD suffer from, I read that it is no surprise if there is in fact an increase in heartrate and even a decrease in BP upon standing. Maybe I could bring this up to the specialist as well??

3) Well, my doctor was pleased I was on the beta-blocker (Toprol) and seemed indifferent towards the fact that I was on Lorazepam. He kept asking me if the Toprol seemed to improve my symptoms moreso than the Lorazepam, but I told him both worked perfectly together to reduce my symptoms.

Yet don't worry. I am not giving up on him at all. I am trying to get ALL copies of my bloodwork/blood tests, EKGs (Haltar and regular), Stress Test that was performed in December, EEGs, ECGs, etc.

Also, about the tilt-table test, do you know exactly how the procedure works?? I was reading that they inject you with something to increase the chances of a reaction on the tilt-table, then inject you afterward to calm the system back down. I am on medications, and don't want to do anything invasive as injecting something to provoke symptoms.

And yes, I am quite aware that panic and anxiety and all that are secondary to the underlying cause, whichever Dysautonomia it really is (which I think MVPD). I am still in the process of gathering up all of my records for when I am able to return and see the doctor again once and for all.

~Crystal

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RCA7591
6/5/2007
C6  Crystal

Hi Crystal,

The fact that you do have MVP (confirmed on numerous occasions to boot), would strongly indicate that you do suffer from MVPD. You should absolutely obtain copies of the Echo, Holter Monitor, ECG's, and other work-up's, and present them to this doctor. I think once he see's the "proof", he'll change his attitude (and diagnosis).

POTS has many etiologies, everything from rare autoimmune diseases to autonomic dysfunction. It could occur with MVP, but I honestly don't think that you have it. If you did, you would likely have had past episodes of syncope or near syncope.

The tilt-table test should be performed in all cases of Dysautonomia, as it will shed some insight into how your blood pressure reacts to stressors and positional changes. Basically, you are strapped to a table on a 30-degree angle. The table is then raised to a 70-degree angle, and you remain in this position for 45 minutes. During this time, your blood pressure, ECG, and pulse are monitored for gross changes. If no gross changes are present after 45 minutes, the table is returned to the 30-degree position. An IV line is started, and a small dose of Levophed or Isuprel is injected (these drugs mimick Adrenaline). The table is again raised, and the vitals monitored for gross changes. The Isuprel has a very short half-life, several minutes. The drug is used to evaluate your reaction to stressors, and is an important part of the test.

The test measures your baseline vitals, and your vitals under stress. In the case of POTS (and other froms of autonomic dysfunction), the blood pressure drops rapidly upon assuming the upright position of 70-degrees, resulting in symptoms of lightheadedness, panic, visual disturbance, audible disturbance, etc. Very rarely, syncope results.

Contraindications for the second part of the test (Isuprel) are Hypertension, Pheochromocytoma, and allergy to Sulfites. The drug has a temporary pressor effect on the myocardium and stimulates Beta receptors, overriding the Toprol. The test can still be performed without the Isuprel infusion. The effects are short lived, however, and the dose is very small (1:5000).
The dose is similar to what you body produces during an anxiety attack.

As far as the Benzodiazepine is concerned, it is a key element in treating the symptoms of Dysautonomia in any form. The Benzo and Beta-Blocker work in concert. Remove one, and the symptoms return. They must be used together.
Tell him that the Toprol and Ativan work together, but not separately.

-Ryan
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183202_tn?1219857259
I am going to post to you some posts that I (and others from the Anxiety forum) have posted about Mitral Valve Prolapse Dysautonomia. Here is one that I posted to Annie the same day that I responded to you:

"No, I have never brought up the topic of dysautonomia on this forum. I am discussing it quite thoroughly with another sufferer of Dysautonomia on the Anxiety forum/board, and he agrees with me that I suffer from Mitral Valve Prolapse Dysautonomia.

Just because I got a drop in blood pressure and an increased heart rate upon standing does not indicate that I suffer from Postural Tachycardia Syndrome. This symptom is ALSO seen in patients suffering from MVPD, as well as the Panic Attacks, dizziness, clamminess, paresthias and other symptoms I have had to endure over the past couple of months.

You are correct when stating that Dysautonomia and MVP are two totally different entities. Yet, since MVP (Mitral Valve Prolapse) is a hereditary disorder, it has been shown that in 40% of sufferers of MVP, during the formation of the fetus while the prolapsed valve is forming is the same time that the ANS (Autonomic Nervous System) is also being formed, and in 40% of cases it has been shown that there is a link between autonomic nervous system dysfunction and those suffering from Mitral Valve Prolapse. The cause is not the heart itself, but there is some correlation to the fact that the two are forming around the same time while in the fetal stage. This leads many suffers to in their teen and early 20's years to get onset attacks of what they claim are "MVP attacks" of chest pain, chest palpitations, panic attacks, lightheadedness and dizziness, etc., yet the cause is NOT because of the prolapsed valve but rather from the dysautonomia that is seen in 40% of patients with this valvular defect.

I am not discrediting the doctor when he says "POTS," but he also failed to believe I have the full onset MVP, when I have two echos within the past few years for proof, as well as all the symptoms that correlate to the dysautonomia often linked with sufferers of Mitral Valve Prolapse. I know deep down that I have it nailed on the wall this time, and I am in a way thankful for his finding that my blood pressure drops and my HR rises upon standing, because this just further proves the credibility and my belief that I have Mitral Valve Prolapse Dysautonomia.

Thanks for your response, but both the person on the Anxiety forum (who suffers from Dysautonomia) who I have been discussing more thoroughly my symptoms with and I fully believe I suffer from the Mitral Valve varient of Dysautonomia.

Also, I heard that POTS is sometimes questioned as to whether it in fact is a full-blown dysautonomia, or just coincides/is part of a more complex dysautonomia/dysfunction of the ANS. Also, sufferers from MVPD often have a lower blood volume than normal (only 80% of that which the average person has), which leads to this increase in HR and decrease in blood pressure when standing. But I have NEVER had syncope or near syncope in my life. I have had other symptoms, but never full syncope seen in patients with POTS.

Yet I'd love to keep in touch with you. And believe me, I am not discrediting the doc. He just doesn't know me or my full symptomology. He is only going by the fact that I had a drop in BP and increased HR upon standing, which as I said is also common in sufferers of MVPD. I just need to show him the paperwork and proof that I indeed DO suffer from Mitral Valve Prolapse. My birth mother has it as well, and has minor panic attacks and heart palps, yet I do not know if she has the dysautonomia version like I get or if it is merely panic attacks for her.

~Crystal"
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362885_tn?1201486528
Hi guys I am a sufferer of POTS/IST used to think I had neurocardiogenic pre-syncope, but with the tachy it was deff. POTS.  I do have a question though...I usually get my visual, hearing, creepy crawly rush that starts at the bottom of my feet and goes to my head and heart (not a typical adernaline rush) but then I feel the vision closing in and hearing loss and feel like paralyzed like im gonna faint.  Then it seems to pass, often this continues to happen for about an hr on and off in like waves.  But the main thing i wonder is why do my situations happen when sitting down not standing up etc?  I have rapid pulse that just shoots up for no reason for a few seconds then goes back down but a high pulse upon even little movements.  I have vision problems when i get into one of these funks and it has happened like 4 to 5 times in my life lasting 5 to 6 months of uncontrolled sypmtoms then for some reason the right combo works (then all of a sudden it stops)  not sure what thats all about.  I cant even stand up without my pulse going crazy it even jumps occasionally 140 to 160 for a few seconds when lying down, its uneven & my vision at these times doesnt seem to work its weird.  I also have pressue in head neck, hard to breathe (sometimes feels like i hold my breath its weird) i am dizzy, lightheaded especially upon quick standing but most anytimes.  my period screws stuff up more, I didnt do this bad with these symptoms with bariatric surgery, but this tonsilectomy (3 po bleeds) has started this nightmare over again. Its just a crazy battle & I need ANY help!  thanks in advance
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