Broken_Shell

Hi All,

Just a quick update... I am still experiencing bad pain with my arms and having a difficult time using the computer. Adding this new problem, which doesn't seem to be going away, has been frustrating and disheartening on top of the dysautonomia. I still don't know what caused this problem or why it isn't improving with the occupational therapy. At any rate, I wanted to let you know you are in my thoughts and I am trying to get on the forum and post every so often when I can type a little. I am praying for you all and welcome any new members that I may have missed!

~ Broken_Shell

I am so sorry to hear of your situation. I am not aware of a specific link between epidural injections and POTS, but I can see where there could be an association with the CSF leak or any type of "neurological trauma" that your body perceived from the procedure or the aftermath. I am glad that you have a thorough cardiologist working with you, but frustrated that the epidural doctors have written you off. I have been affected by this condition for nearly 8 years, and I send you strength and positive thoughts.

Broken_Shell

Hummingbird,

I used Miralax for years and didn't have any major side effects or problems. I took less than the recommended dose and adjusted the amount each day based on my bowel function. There has been some discussion on the forum about Miralax in the past, but it is not absorbed and stays in the GI tract, so it may be worth a trial using a very small dose. In the past, I had severe constipation and was helped by and able to tolerate very small doses of Senna. One other thought, have you tried taking Fish Oil? That always increased my bowel activity. Good luck!

Broken Shell

Continued prayers and hugs for you God bless your amazing daughter as well. Please hang in there and keep us updated... and don't stop wearing your make up! Ha Ha Don't lose your sense of humor.

I can relate. I hate to have to do this, but I have to tell people "Don't make me laugh." If I have to laugh, then I try to at least sit down.

Have you tried Miralax?

Hugs and support are coming your way every day! I pray that you get to Vanderbuilt soon and they can figure out what is going on. You WILL be able to go home to your kids - don't lose faith or let that thought slip from your mind.

~ Michelle

I have tried both flax oil capsules and ground flax seed - both caused me to get immediately flushed in the face, dizzy, and an onset of autonomic symptoms. I have had a similar with cod liver oil capsuls and olive oil. I seem to have a general intolerance to any type of oil, but I am not sure why.

Erika,

(I am having someone else type this post because the pain in my arms is severe). I just wanted to check in on you and find out how you were doing. Please know that I am keeping you in my prayers, and I hope the new neurologist can figure out what is happening. I am sure that they have ruled it out, but I just want to make sure that you have been checked for myasthenia gravis. Hang in there, and remember that your "forum family" cares about you.

Broken Shell

Nikki,

I was diagnosed almost 8 years ago and still have not found a combination that works well for me. That being said, my symptoms seem to change a lot and it is only recently that I have begun exploring "traditional" POTS medications and treatments. Before that, I was sent to many specialists who just tried to treat the symptom in their specialty and did not understand the big picture. However, for YEARS after my diagnosis I constantly told doctor after doctor that I felt like I was on a boat, I felt floaty, I felt like my head was not getting enough blood or was disconnected from my body, I was on an elevator, etc. they all looked at me like I was crazy and said they couldn't explain the symptom, even when I told them that I had been diagnosed with dysautonomia. Unfortunately, I don't have much in the way of treatment advice, except just to tell you to hang in there and keep trying things. Do not give up until you feel like yourself again, and don't let any doctor tell you that you are adequately treated if you still do not feel well! In the last year, I finally have less periods of time where I have the boat, floaty feeling... even if it is gone for a few hours of the day, but I will take that over nothing. It is like coming up for a breath of fresh air and reminds me that there is hope. I can't really attribute the reduction of the symptom to anything specific, but I know that I am headed for bad flare when the symptom goes back to being as severe as it was in the past. Just hang in there, keep going with trial and error, and know that I send support.

~ Broken_Shell

Honey, you are in my prayers and thoughts! Please keep us updated when you can. It's ok to be scared. I am glad that you are in the hospital though. I send you big hugs!

~ Michelle (Broken_Shell)

This is a brochure from DYNA, but look at page 5.... it lists a lot of symptoms that many of us here ask ourselves "is it POTS/dysautonomia"?

http://www.dynakids.org/Documents/You_Have...a_Condition.pdf

Suzie,

Don't let anyone tell you those symptoms are ridiculous. I feel strange sensations all day long that I can barely describe. Many relate to "dizziness" or lightheadedness, but not in the tradition sense. I feeling like I am suddenly falling, sliding, my head is "floating", tilting, etc. My HR and BP are pretty constant through these symptoms, sometimes I go into a cold sweat or my hands get clammy. I also get both cold sensations and warm sensations that often start in my chest. Sometimes I get visibly flushed, sometimes I don't. For years I was afraid to describe my symptoms because they sounded so crazy, but they are all dysautonomia. Hang in there - you are not alone!

~ Broken_Shell

Hi,

When I take 400 to 600 mg Advil several days in a row I seem to feel better. Has anyone else noticed anything like this? Just curious. Thank you.

~ Broken_Shell

Hi Ladies,

Here we go again on the topic... I am looking for another option to try and shut down my periods because the hormone cycles are making my dysautonomia completely disabling... I am wondering if anyone has any experience with Ortho Evra patch. Thank you!

Thank you and well stated... pats to everyone out there for fighting each day!

Checking for a chiari maybe?

Yes, mine start out purple to the point of being almost black in patches, but then after a few minutes they are bright red. Half the time my toes look scary - like they could be damaged by poor circulation, but the cardio says its venous pooling and I shouldn't be too concerned about it.

Oh Erika!

I am SO sorry this happened. Do you feel weak or like your muscles are tense and won't move? With the shaking symptom, I am wondering if a low dose of benzo would help. Your hr and bp are ok from what you said on your post, but maybe your body got over stressed and just needs to calm itself down. If you feel like the muscles are tense, then it might be worth a try - just a tiny dose... like 1/4 of a pill. Sometimes when I get a bad flare I feel like my whole body braces up and gets tense and trembly. Let us know how you made it through the night when you can, ok?

P.S. Thanks for the PM.

~Broken_Shell

Suzy,

Great to hear from you! I am SO happy that you have found inner peace and that you are feeling better these days. I wish you all the best, and I hope that you continue to find positives and progress in your life. Enjoy taking pictures!

~ Broken_Shell

Cathy,

I was admitted to do the prep for my colonoscopy because of my dysautnomia. I did ok, but I was really weak and dizzy and had a lot of tremors during the prep. I think the hospital I went to had an option would you could come in the AM to do the prep in an area supervised by nurses. Maybe this is an option? Call and ask if they have something and explain your situation. It is mostly intended for elderly or mentally disabled who need assistance or supervision. Else, make sure that you have someone with you while you are doing it.

~ Broken_Shell

Chrissy,

I am so sorry to hear this, but believe me - I hear you loud and clear. I am having a bad time right now... I almost called my mom at work and asked her to come home and take me to the hospital a couple days ago. I have called the neurologist, GI, and endocrine docs. What did they say... well, the neuros to talk to GI, GI says to talk to endo, and endo says to talk to neuro. Have we come full circle yet? At least the cardio got back to me and saw me, but he kept looking at his notes and saying, "you have one of the worst causes I have ever seen a patient with..." I have heard complicated, unknown, and anomoly more times than I can count. I wish there was an answer for all of us!

Have you ever tried or tolerated Reglan?

On a side note, I think maybe we should all show this brochure to our docs who don't understand what dysautonomia is... For years I was told my symptoms couldn't be linked to a common diagnosis, but except for hypoglycemia they are all there...

http://www.dynakids.org/Documents/You_Have...a_Condition.pdf

Hang in there... I am praying for you. Keep us updated if you can.

~ Broken_Shell

Same here. I don't know why we get short of breath. I do notice that when I am at my worst, I find I am "bracing" my chest. What I mean is, imagine you are playing football(I never have, but picturing...) and you are getting ready to get hit. You automatically tense up your body to help protect everything from the hit. Well, that's what I mean about my chest/shoulders. It happens everyday, almost all the time, at varying degrees. So, in a way it sometimes seems like a mechanical problem for me, not letting my lungs expand well. Anyone experience that external tightness? That has only been happening since I developed POTS.

Any, once the adrenaline starts to flow, you can forget it! It is automatically more short of breath!

Odd that you mention that... I frequently tell my family that I feel "bracy" - exactly as you described, but I do it with my back, neck, legs, whole body I guess... It is accompanied by these wierd sensations like I am tipping sideways or the floor is shifting under me. Sound familiar to anyone else?

~ Broken_Shell

I am the same way right now... I think it is because talking is like exercising - it stresses our bodies. Plus, when we are talking then aren't breathing like normal - add that to already insufficient blood perfussion and tachycardia and it can certainely produce our symptoms.

~ Broken_Shell

Welcome Noreen!

I am glad that you found us, and I hope that we can provide you with support and helpful information! I am sorry for your suffering though, and hope that you are able to find a good combo of treatment that will help you be able to feel a little more like yourself again.

~ Broken_Shell