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This is what helps for me personally


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I've been diagnosed with Dysautonomia, POTS, Ehlers-Danlos, NMH.

Before my diagnosis I was a pretty private person. Since all of this has happened I have learned to adjust so that I can share my story and experiences. This is my trial and error with medications and why I take them.

The first 2 years of my illness I was so sick I nearly quit my job, I was considering handing over the kids to my ex-husband and I was thinking about selling my home and moving in with my parents. Most days I could barely get out of bed and crawl to the bathroom. I had to keep fighting!

I was anemic during the first 2 years of my diagnosis of POTS. My blood count was almost low enough for a transfusion, so I was extremely exhausted all of the time.

The adrenaline from watching an exciting movie would cause me to have extreme irregular heart beats, PVC?s, tachycardia and even V-tach. Standing up to cheer my son on at his football game would nearly cause me to pass out on the person in front of me.

Note

Because of extreme sensitivity too medications they always start me on a very small dosage and work me up if necessary. Some medications I still take a quarter of the recommended starting dosage, my system doesn't need much.

Tachycardia -

I went through a series of beta blockers (Metoprolol, Propranolol and some others I can?t remember) before I found one that worked for nearly a year. Many of the beta blockers would add to my extreme exhaustion, I could sleep nearly 24/7. Some would cause my heart rate to drop and stay in the 40?s which made me feel as bad as being in the 160?s. Some didn?t properly control my tachycardia and others caused extreme shortness of breath. When the Atenolol finally quit working they switched me to Betaxolol which I?ve been on since.

Anemia

I take a combination of Epogen and IV Iron. Epogen works two-fold for anemia and it?s used as therapy for increasing and maintaining volume in some Dysautonomia/POTS patients.

The combination Epogen & IV Iron has helped with the extreme fatigue and cognitive difficulties; I have less nausea, tremors and the constant need to sleep.

IV Fluids

I have a standing order now to get IV fluids when necessary, this alone is great peace of mind :blink:

Joint & bone pain

I suffered from severe joint pain for over 10 years before my POTS diagnosis. I saw rheumatologists from Oregon to NY, looking for any answers and relief that might be available. It was my POTS cardiologist that finally saved me by prescribing Neurontin for me. What a lifesaver it?s been to control my joint & bone pain.

SSRI?s

SSRI?s have been used to treat neurally mediated hypotension & syncope.

I tried Celexa but it increased my headaches dramatically.

I take a very small dosage of Zoloft.

GERD/Stomach problems

I continue to keep it simple by using Pepcid and Mylanta.

Headaches/Migraines

I use Tylenol. Imitrex for Migraines.

I do basic recommended things. I prefer to wear a good brand of nylons vs. compression hose. The pooling in my legs isn?t as severe as for most patients so this allows me to make such a choice. Many have severe pooling in their legs and need to purchase good compression hose.

I drink 1-2 cups of coffee a day to help with hypotension. Coffee is a vasoconstrictor. I have to be careful though because some brands of coffee cause me to have severe tachycardia and coffee is considered a diuretic, so you don?t want to loss large quantities of fluid if you?re trying to maintain them.

I use a minimal dosage of Florinef to help with Hypovolemia and fluid retention.

I have Zofran when I can?t tolerate the nausea for one more minute. Phenergan doesn?t work for me.

Sleep aid

I use Sonata but it usually only helps me go to sleep, it doesn?t help keep me asleep long term. The bright side is that I don?t usually feel hung over from this medication.

I take Synthroid because I had a preexisting thyroid condition.

I have also found some vitamin supplements to be extremely helpful.

I drink plenty of fluids to help maintain my volume.

I had an allergic reaction to Midodrine.

I?m sure that I?m forgetting things but these are the basics for me.

I haven?t found a cure for POTS but it?s taken me 3 ? years to find improvements to my life. Every single person is different so what works for one person, might not work for someone else. I haven?t eliminated all of my symptoms but in many cases minimized them to toleration. I continue to have the frustration of new symptoms and the process starts all over again. Research what it is, why, what is known to help, what others might be doing for it.

I hope this helps.

Steph

To very helpful WebPages are -

http://home.att.net/~potsweb/POTS.html

http://potsplace.com/what_helps.htm

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Hi Steph;

THANK YOU for sharing your experiences. I agree that "what works for one person might not work for someone else". But, just as important, experience and empathy have great healing powers as well. I have seen many of your posts here that have made me feel alot better when I had down days.

You have been through so much!!! Through your experiences, here, you have given hope and ideas for others to take to their physicians to discuss and try. That is a big thing!!!, especially with a sydrome that not many doctors are familiar with.

Thanks again!! Bless you!

KathyP :blink:

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Hi Briarrose,

Thanks for sharing your treatment journey. This is very generous of you.

It is also encouraging to see that even if you were so sick a few years ago now you are almost back to a "normal" life.

Ernie

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