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Hope


KathyP
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Hello All;

I have not been back to this site for quite some time. I have been extremely busy getting back into a normal life. I was diagnosed with Dysautonomia in 2004. My cardiologist diagnosed me with Inappropriate Sinus Tachycardia, VasoVagal Depressor Syndrome and a severe Anxiety Disorder. I was so ill and agoraphobic I didn't leave my house for a year. I was so depressed and nothing I did seemed to help. I found a doctor who really listens. He gave me hope and wasn't afraid to ask other doctors their opinion. I kept my faith. I was bound and determined to beat this and/or to find a way to cope and move on. I have run into very difficult times, but those have getting fewer and fewer with each passing day.

I had a hysterectomy in 2003 do to Polycystic Ovarian Syndrome that was so bad that I would be bed ridden during monthly cycles. This, I have come to learn, is a form of Dysautonomia as well. I suffered with this my entire life. It was also found that I have mitral valve prolapse/dysautonomia. I had a TTT and my cardiologist suggested a beta blocker, which my internist prescribed. A while back I wrote a thread, in this forum, describing a total bio-identical hormonal compounding I started. This included a total hormonal blood work-up which included testing my levels of all the hormones; all reproductive hormones; thyroid TSH and T3 and T4; insulin and blood sugar fasting; Cortisol; Adrenaline and Seratonin levels. I don't mean to be redundant in any way, but in my opinion as well as my physician's, MY case of Dysautonomia was contributed to my breakdown of inproper levels of my reproductive hormone levels. All hormone levels in the body work off of eachother. If one is out of balance for a long period of time the other hormones compensate for what is lacking. When all of the hormone levels become too out of balance and the body is working overtime this can cause a breakdown of the autonomic nervous system.

My panic disorder started right after my first child was born and progressively got worse after my next child. This is suspected when it all started 14 years ago. After countless blood work and recently reviewing all testing from the beginning the pattern makes sense to me what was going on with my aspect of dysautonomia. I had insulin resistence caused by my polycystic ovaries. I had symptoms of Hypo-Thyroidism, my cortisol levels were very high, and the serotonin levels were completely out of balance.

Through trial and error, as well as adjusting hormone levels medically, I am now down to only reproductive hormone replacement. I am no longer on glucofage or levothyroxine. I have been on a strict regiment of at least 7 - 8 hours of sleep each night, and religiously taking my beta blockers and HRT cream everyday. That is all the medication I am on now. I too, was told that symptoms were all in my head when I went into an emergency room. I, personally, decided that it might be a good idea to talk to a psychologist who helped me cope with alot of issues I didn't realize mattered. Now I am feeling better than I have in several years.

The reason I am writing this thread is not to tell you to do the same things that I am doing. I am writing this to give hope that it is possible for everyone with dysautonomia to get relief and to feel better. It takes a great deal of faith, an understanding doctor, patience, and alot of trial and error. I have also learned to swallow my pride once in a while and admit I need to try something new. I am sure some of you may not have the possitive outcome that I have had, but no one knows what the future holds. Each one of us is different with different issues.

I write this to all of you because I came here in the beginning of my diagnosis with a feeling of hopelessness and frustration. I thought I would never feel healthy or have energy ever again. Now I am seeing a light at the end of the tunnel and I know it is not an oncoming train. I still get symptomatic and run down once in a great while, but I can deal with it and it is not as bad as it was.

If I was ever to give any advise to anyone here, without being offensive to anyone, it would be to never give up hope. Talk openly to your doctor. Research as much information as you can. Listen to your own body, it is giving you signals constantly. If you can afford medical testing and blood work insist on tests and researching every avenue. Talk to your parents and grandparents about their health history. It is my opinion that dysautonomia sometimes can be a hint to something deeper that can be simple to treat. Dysautonomia is not the end of your life or a prison sentence. I truly believe that it is an obstacle along our path in life. It will teach us more about ourselves as well as make our hope, faith and patience stronger. I hope I haven't offended anyone with this thread. I just wanted to share my success. I am not sure about the different forms of Dysautonomia such as POTS, irritable bowel, etc. I know that I may never be completely cured of dysautonomia but I do know that there is hope for better days. I do know that there is hope for everyone here. Take care!

KathyP :rolleyes:

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Kathy, I've been estradiol for many years due to osteopenia which is now osteoporosis.

I went to a conference about the bio hormones. This was a medical doctor (female) who discussed all these tests etc and how they all work together. It all made sense, but in order to get the work up it was about 7000 out of pocket as only certain labs will do the tests, she is not covered by any insurance in my area, so I was pretty leary. if something is totally legit, it seems the insurance would cover and the doctor wouldn't want cash out of pocket as opposed to insurance.

That being said, my friend and I did find an ARNP that ordered basic labs and prescribed these compounds and a pharmacy here in town that made them up.

I titrated the dose per her instructions, but found I could just not tolerate them. My friend had better luck for about a year. She really liked it much better than the standard hrt she was on.

However in the last several months she has had continous break through bleeding. (I had a hyst in 86, but have my ovaries) She now has to have either a hyst or ablation. She is 61 and I am 51.

I am REALLY glad these meds are working for you and hope they continue to do so. Anything that works for people, I'm all for. And hopefully you will just get better and better.

My concern is for those people that are so desperate to feel better, they will do anything it takes, including seeing less than reputable people and spending money that, frankly, most of us probably don't have.

My suggestion for those willing to try this route, is to see a reputable doctor, that does deal with insurance, and labs with coverage. My point being, you shouldn't have to pay for everything out of pocket to see if this particular route will work. There are doctors out there very willing to try these meds, if you are willing to look for them. Any doctor that has ties with only one lab, or will only use one lab, immediately raises a red flag to me.

We know of course, there are weird tests out there that only a select group of labs across the country do. However, any type of hormonal testing can generally be done in any lab.

So if it works, go for it, but do beware of the less than savory people willing to make lots of money at your expense, whether emotional or financial.....morgan

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Hi Kathy,

I just wanted to say that I am glad that you found a treatment that works for you! :rolleyes: Thanks for sharing your story.

Jacquie

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Hi Morgan and Jacquie;

Thank you for your kind words.

I totally agree with you Morgan. Everyone needs to be aware that there are labs out there that pray on people's needs to feel better.

I did not go through any fly-by-night online or pharmacy offer for hormonal balancing. I talked with my Primary Care Physician who is an Internist about these tests. My Gynecologist, who I've seen for many years, ordered all the testing. I took his order slip for all the lab work to my regular lab where I have all my blood testing done. They then sent all the results to both my GYN and PCP. For me it was like any other blood test that I had done, they just took out a little more blood for all the testing. My insurance covered all the lab work like they usually do. Then my GYN wrote up the exact prescriptions I needed to get my hormone levels back to a normal range. I did not attend any seminars, nor did any woman/man, I never met before, tell me what I needed to feel better.

Any doctor can order these tests. Checking all hormone levels is nothing new to doctors. This is something that should NEVER cost anyone $7000.00. I agree that there are pharmceutical companies that want people to believe that Bio-identical Hormone Balancing is something new. But it is not new. I feel, for me, it was worth discussing with my doctors and they were very open and honest with me. We worked as a team which is how it should be. People have to realize that the drug companies and doctors work for us, not vice-versa. If our doctors can't work with us we need to find a new one, and there are many out there that don't act like they are superior and know all. The same goes for pharmecutical companies. If the technology, testing and medications are out there I say take advantage of it and don't be afraid to talk openly with your doctor to tell him what you want. Doctors have nothing to lose by doing these tests. They just read the lab results and prescribe as needed.

I, by no means, suggest that anyone do as I did. I posted threads, in this forum, to share ideas or to ask questions. I would never suggest anything outside of talking with your own physician to find what helps. I only meant to share my story to show that there is hope out there. We need to have hope and patience to find what works for each of us. Most importantly, we should never stop looking. Take care!

KathyP :rolleyes:

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I totally agree Kathy! Thanks for your positive input...The reason pharmaceutical companies do not like these meds is the short shelf life and they can not be manufactured in great bulks like other meds, then sold at a great profit. They have to be compounded at a pharmacy.

That's why flu shots are so hard to come by every year....

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