We Look For Cures But Run Into Walls, But Are They The Right Walls?

[KathyP]

Hello everyone!! I have been here for some time. I read mostly. I haven't posted in a very long time. Since my diagnosis with dysautonomia I have went back to school. I studied every aspect of the Autonomic Nervous System, the Cardio System and every other aspect of Anatomy and Physiology. This has taken me 3 years.

I have pushed myself past my diagnosis in search of something else. What I, personally have found is that I was looking in the wrong place the entire time. I have found that my disorder was a precurser to something else. My "dysautonomia" was a sign of some other underlying condition. My hormone levels were so out of balance my body went into a state of panic, screaming at me with my symptoms. I am stressing, first and formost, that this is my own personal case and does NOT reflect the out come of any other suffer here. I pray for each of you who suffers with POTS or any other form of Dysautonomia. Dysautonomia is a dysfunction of the Autonomic Nervous system, or the fight or flight response after all, and an imbalance some where is causing this response to react.

The one thing that I want to stress most of all is.......PLEASE PLEASE PLEASE, don't stop searching. Be insisting with your doctor. HE WORKS FOR YOU. Make him do the job your insurance or even you yourself pays for. If he doesn't, get another one. I was once so crippled with my symptoms that I couldn't leave the house. I found a doctor who listens to me and was willing to look farther than his own busy schedule. Now, I have graduated from school, I am starting a new business and can move forward, knowing that I have limitations that I listen to.

You have the ability to grow past the your limitations. There is hope always.

To start, demand a total and thorough examination. DO NOT only look at your symptoms. Your body is telling you something. If you have to have every blood test, there is, done then do it. Hormone levels, I can't stress enough the importance of checking all levels of reproductive, thyroid, adrenal, glucose and insulin, and even parathyroid hormones. Talk to your doctor!!! Ask about multivitamins.

I understand that some may have such debilatating symptoms that just getting them under control is the main issue. But don't discredit the fact that POTS and dysautonomia may be a sign of another underlying condition or inbalance. I read many articles posted here that were written by doctors and they don't seem to ever know what they are dealing with. I say, stop looking at the symptoms, and deals with true signs by looking at the body as a whole, and not just cardio and nervous seperately.

Please know that there is hope.

KathyP

[firewatcher]

Kathy,

If you don't mind my asking, what underlying condition? My hormone levels are also "off," almost to the point of hypogonadism, but no doctor has yet mentioned that word. My OB/GYN now has me on hormone replacement therapy, but it does not help my POTS symptoms.

[KathyP]

Kathy,

If you don't mind my asking, what underlying condition? My hormone levels are also "off," almost to the point of hypogonadism, but no doctor has yet mentioned that word. My OB/GYN now has me on hormone replacement therapy, but it does not help my POTS symptoms.

Getting your homones back into balance takes time. Be patient! Mine took many years. The condition I was diagnosed with was Polycystic Ovarian Syndrome, which required a hysterectomy. That is what started the hormone imbalance. From there that imbalance of ALL reproductive hormones led to my other endocrine hormones, such as adrenal, thyroid and parathyroid to be completely off.

I had bio-identical hormonal replacement cream for all of these until my levels went back to normal, which when balanced, I had to wean from very slowly. While I was unbalanced hormonally I was extremely symptomatic for dysautonomia. My heart was going crazy. I had vasovagal depressor syndrome, orthostatic intolerance (I couldn't stand for more that 20 minutes without feeling faint.), PVCs, and severe anxiety.

The blood test that I had proved that I had 0 level of any reprodutive hormones, of course. That made my endocrine system pump out more hormones to compensate. My thyroid was up and down like a yo-yo. My cortisol level was through the roof.

Before I had my hysterectomy, I had very bad anxiety and heart palps. Learning to control that alone was a nightmare. That was all I was focused on. I didn't care what was causing the problem. I only cared about dealing with the symptoms. So, after many drugs to control the anxiety, I learn meditation and self hypnosis (no kidding). Then I decided to go back to school. I graduated with a Science degree as an anatomist in research. I can work with research, but in no way can I diagnose.

But I do know what I have been dealing with and can only speak from my own experience.

Each person here has an individual case which is completely different from others. You have to find what is happening with your own body. Sure you can come here for support. This site got me through some very low times. This site gave me the light of hope when I was first given the news from my doctor.

I can't give names of doctors who specialize in Dysautonomia, there are hardly any. Look in the Taber's Medical Dictionary. You would be amazed at the definition of Dysautonomia.

As for recommending a doctor, I can tell you that any MD who can run a test and know what is normal and what isn't normal can do a thorough exam. With everything I have learned, people with dysautonomia developed the syndrome because of a freak virus, heredity, Lyme disease or even through metal poisoning. I haven't seen many men with this. Are there alot of men at this sight? Menopausal woman can experience dysautonomic symptoms as well. The posibilities are endless.

My main point of this is to stress, NEVER stop searching, never stop hoping. It is very easy for a doctor to say, "Well, all I can say is that you have POTS." And then they leave it at that. Then they get frustrated with the patient when the treatment they gave for the symptoms no longer works for them. Doctors stop there. They don't realize that there may be another reason. They need to take one step further.

Our bodies are an amazing machine. This machine is meant to work like a symphony of music. Each instrument complementing the other. Without the drum, you have no rythm. And that will throw off all the other instruments.

The Autonomic System has a sympathetic and parasympathetic region. Anxiety is sympathetic - heart rate, stomach problems, gerd, dry mouth (ready for fight).....it dilates the blood vessels which can drop the blood pressure. The parasympathetic controls the rest and digest area - tired, salivation, digestion (which affects the blood pressure), colon problems, and urination problems. Have you noticed your breathing? Are you breathing too fast, or hyperventilating? All this is connected through the nervous system. But these are all set off my something outside the body or inside the body.

I am sorry for rambling, but I am only saying all of this to give you a different perspective and to share what I have learned. Look at your body as a whole working machine. Don't be afraid to consult your doctor.

Peace!

[Ernie]

Hi,

I have 3 brothers and that have POTS and NCS. I have 6 nephews and 5 have POTS and NCS. In my family sex does not matter whether or not you have the disorder.

[KathyP]

Hi Ernie!

My father has NCS, do to a very low blood volume. He was recently diagnosed with Myelo-dysplastic Syndrome, which is a disease where the red bone marrow can't produce mature blood cells to sustain a healthy blood volume.

While he was very symptomatic with the Neuro-Cardiogenic Syncope, he had to increase his salt. Then he went into congestive heart failure. Now it is a very sensitive balancing act to keep him on an even keel.

The reason I was asking about the number of men here is because I haven't seen many at this site. There is predominently women here. Also, in my studies, I have found that woman have more issues with the hormone factor do to menopause.

Dysautonomia runs in my family, with the guys as well as the girls. But, the girls are much more sensitive to symptoms.

[ramakentesh]

Ive been searching pretty hard lately and Im pleased to say that the primary causes of POTS are pretty close to consensus and with that there should be better medical interventions in the not to distance future.

'

With everything I have learned, people with dysautonomia developed the syndrome because of a freak virus, heredity, Lyme disease or even through metal poisoning. I haven't seen many men with this. Are there alot of men at this sight? Menopausal woman can experience dysautonomic symptoms as well. The posibilities are endless.'

Yes, but the likely culprits are peripheral autoimmune denervation (post viral), overexpression of angiotensin II resulting in reduced nitric oxide (nMOS), genetic polymorphisms or epigenetic changes to the NET protein, connective tissue disorders or Mast Cell activiation disorders.

Im a male and Ive got POTS - it is unclear whether i have any family history though.

[mkoven]

KathyP, Does this mean that you continue on a hormone regime? If so, are there concerns longterm about cancer or clotting? I can say that my symptoms definitely feel hormonally triggered. I had my first bad episode at 35, and then only intermittently before my period. I'm 42 now, and my cycle feels like it's the most direct culprit. But no one is willing to put me on hormones (me included) because of a history of complicated migraines and a family history of breast cancer.

[KathyP]

KathyP, Does this mean that you continue on a hormone regime? If so, are there concerns longterm about cancer or clotting? I can say that my symptoms definitely feel hormonally triggered. I had my first bad episode at 35, and then only intermittently before my period. I'm 42 now, and my cycle feels like it's the most direct culprit. But no one is willing to put me on hormones (me included) because of a history of complicated migraines and a family history of breast cancer.

Being of age 42 and with you still having your ovaries, it may be unlikely that a hormone replacement would be considered. Most women are close, or in to peri-menopause at this age. I had a complete hyst, in my 30's. I am currently on hormone replacement, but am weaning off, very slowly, so my body can be somewhat normal to the natural course of menopause.

When it is time to lower my dose, I experience retinal migraines. Before my hysterectomy my hormone levels were all over the place. When there was a surge, I would be highly symptomatic, when there was not enough, I would be very symptomatic. So it seemed to be a delicate balancing act. But, there came a point when problems became so severe I had the surgery.

It is wise to have your hormone levels tests first before doing any kind of replacement. Your doctor would know best. There are alternatives besides the generic hormone replacements out there. This is where the advice of a gynocologist would be helpful. Endocrinologists deal more with this issue as well.