Hi, I'm New To Dysautonomia!

[AshleyPooh]

Hi all, I just signed up for this forum because so many of you had good advice and thought I'd share in.

My name is Ashley, and I am being tested by my cardiologist for Dysautonomia.

My tilt table test is on the 9th of July, so pretty soon from now.

I just wanted to share with you my symptoms, and see if anyone with similar problems has any good advice about the condition and what I should do.

My symptoms are:

Low blood pressure (started over a year ago, noticed it when I started working as a cashier). I began having phases of feeling tired, out of it, ' going stupid' is how I described it. I began counting change badly at work, making stupid mistakes, going really slow. At first I associated this with blood sugar, but began to realize that I wasn't getting the hunger pains that low sugar caused. I informed my mother about this, and mentioned that I seemed to also have issues when I bend over to pick things up, or when I clean out my turtle tank. She mentioned blood pressure so we started taking it, and lo and behold, it was low. At first , it was okay for the most part, in the 90s/60s, but would dip low occasionally to 75/45 or in the 80s/50s. This is when I'd noticed the 'going stupid' feeling. Over time though, my normal got lower and lower, and the dips got really really low. ( 69/37 has been the new lowest i've seen). Now, you might think this would make me go to the hospital, but for some reason, my blood pressure would bounce back up almost immediately, and just fluctuate low whenever it felt like it! I worried that if I went to get seen, they wouldn't see anything wrong with the blood pressure... so I waited.

I began having upset stomachs around this time too, and did go get seen for that. No one could tell me what was wrong, and since I didn't have insurance, I got labeled as "IBS". My stomach has always been troublesome, but on the slow side, not upset stomachs. We speculated on the gallbladder, but with no insurance I couldn't get it checked... and so I waited...

I became more chronically tired, short of breath, exercise intolerant. Every time I went outside, the heat made me feel like I was shriveling up and had to sit down or get back inside. I had anxiety issues, sleeping problems... I had no idea what was wrong with me.

Finally the worst thing happened: I got fired. I lost my job because I went to work, my blood pressure crashed, and I made a ridiculously stupid mistake ( read someone's ID birthday wrong), and sold alcohol to a minor: something I would never EVER do. (thankfully the minor was actually an undercover sting cop... or unfortunately, can't say which)

I was so horrified, I went into a depression. I was terrified of getting another job in case the same thing would happen to me again. My health got worse over all, but I didn't look sick enough I suppose to be taken too seriously.

Eventually, I went to a low income clinic where I talked to a doctor about my problem. She tried to speculate about anxiety and depression, but when I continually re-enforced that I had low blood pressure and my heart went too fast sometimes, or even too slow, she decided that a cardiologist was needed. I am uninsured, so she applied to a charity program here in my area. I amazingly got accepted!

My cardiologist is named Dr. Cox, and she is a sweet woman who actually listened to me. I told her about my blood pressure being low, and also explained that I get so nervous at doctor's offices that my bp runs a bit high there. She understood. She told me my symptoms sound exactly like Dysautonomia! She listened to my heart, and said that she could sense the pulse changes just from going from sitting to laying down. She scheduled me for a sonogram to rule out physical heart problems, and a tilt table test after that to check for Dysautonomia.

I have the Sonogram on the 3rd, and the Tilt table test on the 9th. I am looking forward to them, because I am so desperately tired of feeling this way. I want to work again, to enjoy exercise again. I don't want losing out on a little sleep to jack my heartbeat up to 129, or not be able to work in the yard because of the heat!

So I have read up on the symptoms and treatment options for Dysautonomia, and I wanted to ask you all about a few things:

1) Is it possible for the Dysautonomia to be causing the dark circles under my eyes? I look like a zombie, they are always so bruised (even when i get enough sleep)

2) How well has anyone done with conservative non pharmological approaches such as compression socks and /or upping salt and fluid intake? I drink tons of water, but I don't think I'm getting enough salt to fix this blood pressure, even though I've tried adding it in my diet.

3) Wht options are there for people whose digestive system is affected by this syndrome? I can't take laxatives b/c of the random upsets, but can't take stuff to stop me up b/c I am chronically slow also! ARGH I just need something to keep things moving steadily

4) Are there any causes of the Dysautonomia stuff I described that I should be looking into? I have heard that adrenal problems could be something, as well as Norepinephrine issues? Should I suggest that to my doctor?

5) Would it be better to switch to a Neurologist? OR stay with my cardiologist? I'm not sure how much she knows about this condition! I live in Florida, and can't seem to find any specialists on POTS or Dysautonomia in my area

Any other random advice would be helpful. I am just so glad I found you guys/gals, because I thought I was going crazy with all of these weird problems that no doctor seemed to be able to catch on blood tests or anything!

Also, I will write to let you all know how my Tilt table test goes!

[volo]

Welcome to DINET, Ashley. Sorry to hear that your symptoms caused the loss if your job and in such a terrible way. It's understandable that you'd have a lot of emotions surrounding that. To address some of your questions:

1. I didn't get dysautonomia until my 50's and I never had dark circles under my eyes, but they started within a month of my symptoms, so I think it is possible these are connected.

2. For me, I had to drink lots of fluids because one of my symptoms was extreme thirst. Compression hose and salt help a bit, but midodrine is what helped me the most.

3. I've found exercise was the best solution for my digestive problems. As soon as I could (for me, only after midodrine) I started walking and exercising on the recumbent bike - at first for only a couple minutes at a time, but now I can walk or exercise for an hour. I try to make sure I take more than 10,000 steps a day and since I have been doing this, my digestive problems have almost disappeared. I still eats maller meals, and add two substantial snacks to my day, and also eat lots of fiber, vegetables and fruit, and this helps too.

4. I don't read as much as I feel I should on dysautonomia as I'm focussed on getting back to work and on doing the things I have learned help make me feel better, but I would advise to read all you can, including the material on DINET.

5. I have POTS and am treated by a cardiologist and am happy with him, as he is a POTS specialist. However, he also refers me to other specialists for further tests as we are still looking for the underlying cause of my POTS, and I expect a neurologist will be next on our list.

I received medication within a week of the TTT and that made a big difference in managing my symptoms. I hope things go as well for you.

[corina]

Welcome to the forum Ashley!

[looneymom]

Hi Ashley,

Sorry to hear about all your symptoms. My son has POTS and he has some of the exact same symptoms. So I will try to share with you what has helped him.

1. Try to drink 2-3 liters of water a day and salt your food. If you like Gatorade, you could alternate between it and water. My son also uses salt tablets but since you have not had testing done, I would not start using them yet. The water and Gatorade, will help keep your blood volume up which helps keep your blood pressure up.

2. My son has also had trouble with dark circles. Do you have problems with sleep, allergies, or thyroid? Dark circles can indicate problems in these areas. My son's seems to be getting better in the area. He does have sleep issues. He has a hard time getting to sleep but then wakes up 4-5 times after he gets to sleep. I am trying some supplements that may be helping but still not sure how much. I will post about these later on.

3. My son has never been diagnosed with IBS but also has issues with this. The only thing that helps him is the supplement Magnesium Citrate. He started out taking 1000mg but now only takes 500 mg a day. POTS patients seem to need more magnesium to keep going.

4. My son was diagnosed by a cardiologist and he also works with a neurologist that helps his POTS patients with other symptoms. It's a good team situation. Hopefully you have found a doctor that knows something about POTS and is willing to look at the latest research on POTS.

5. If you can exercise, try to do some everyday or every other day. My son is exercise intolerant. In the beginning, he could not walk or stand. He rode a stationary bike Monday, Wednesdays and Fridays. He rested on the weekends. Walking is better, just don't over do it.

6. My son has low blood pressure issues. I monitored his blood pressures daily and emailed them in to the cardiologist weekly. This was really important after he was started on medication. He does not do well with heat. Fall and winter are his favorite time of the year.

7. Brain Fog (confusion, loss of memory) is also part of POTS. My son also has this problem. The cardiologist put him on Zoloft and this has helped greatly.

8. Fatigue and pain can be awful. Get you B, D vitamins, and iron checked. My son was D and iron deficient.

Lots of information on the forum. Keep track of your symptoms and work with your doctors. Keep posting questions. No question is a dumb question on this forum. We all want a cure for POTS. The right medications can help keep your symptoms under control.

[AshleyPooh]

Thanks for everyone who has replied. Knowing there are other people out there who won't think I'm crazy when I try to explain certain symptoms , who are supportive, makes a huge difference.

I do have a stationary bike, so I am definitely going to start using it, as well as some lower leg exercise training, to get the muscles there bulkier. I drink lots of water, but I coul be adding more salt I suppose. I have an entire family riddled with heart disease, so when I decided to go low sodium a few years ago, it seemed the wisest choice. Little did I know!

I do have thyroid disease that is treated, and allergies, both i'm sure contribute to the dark eyes but not all of it. It seems like the bruises are more like lack of blood flow or oxygen or something? hard to say. I tried to get my regular clinic to check my vitamins, they told me it wasn't ' warranted'.... aka we don't want to pay for it. I will be asking my cardiologist about doing that though.

The Magnesium citrate seems like a good idea for the stomach, a lot more gentle than stimulant laxatives. i just didn't know if it would worsen any dehydration, but i suppose if i drink enough water to compensate I'll be fine.

I have the same troubles with sleep actually. Takes a while to get to sleep, and wake up often in the night. A lot of times, the trouble getting to sleep seems to be either that noises startle me very easy, or I sometimes go to bed with this weak unpleasant feeling that prevents me from sleeping.

I have thought about the Zoloft thing, and I may have to do something like that. I have been feeling so apathetic, no motivations to do anything. Last time I tried an anti depressant was for my muscle problems. They tried me on Savella, but I kept getting so sick from it, even at half the titration levels, i had to quit. I've become very sensitive to medications these days. I tried Singulair for my allergies, and it caused terrible nightmares, and once caused extreme Mania to where I was running in place in my bathroom in the middle of the night to get rid of it! I definitely wonder about the norepinephrine thing, b/c I feel like my brain chemicals are 'off' , if that makes any sense? like when I get stressed, if I start relaxing I almost feel like crying. It's weird lol.

Here's a question someone might know:

Has anyone ever heard of this syndrome being triggered by Bacterial infections? I developed MRSA staph about 3 years ago. After 3 infections in one year, my immune system crashed and I got Hashimoto's Thyroiditis. Ever since then, I've had these problems, and always thought it was from the thyroid, but now definitely know better. I just keep wondering if that bout of staph triggered something, or damaged something...

Also, this is perhaps not a question that you can answer, but I feel the need to ask it anyway. How many of you, with proper treatment, were able to continue holding down your job? Or if it's your son or someone you know, were they able to move on to going back to a job with any degree of normality? I want to be a nurse, but I'm afraid of this condition b/c nurses have to stand up for long periods of time. I'm hoping the medication puts me somewhere close to normal again, but is this too optimistic? I read somewhere on here that a quarter of people with POTS are disabled! That's just terrifying.

Again, thanks for responding. It's nice to know there are folks out there like me, even though being like me ***** right now hehe

[looneymom]

AshleyPooh

It sounds like what happened 3 years ago might have triggered all this. Be sure to share that with your doctor. As far as being able to get back up and go again, that is really going to depend upon the severity of your symptoms. Everyone is different with POTS. For my son it has been a very long haul because his body has not responded to medications that normally helps POTS patients. My son has not been able to return to school due to the severity of his symptoms. If you would like to know his story, it's written in a blog called survivingpots.com.

Do not let yourself get discouraged. Keep a positive attitude. For people that have plain old POTS and no underlying condition, they usually respond well to medications and exercise in moderation. There are post on this forum that tell of other people's improvement. Look at Daddysgirl. She has her life back and is functioning at a normal level again. Feel free to post her and ask questions about her treatment. She went through a program with a doctor in Texas. Keep asking questions and feel free to pm me anytime you like. I'm glad you will be having a tilt table test soon. My son had two of them. Both times confirmed POTS. Who knows, maybe your test will come back negative and then you won't have to worry about having POTS.

[AshleyPooh]

Hi looney, thanks for responding.

I am looking at your blog, and I noticed that your son has myofascial pain syndrome. I have that as well, although it sounds like a good degree less severe than your son's. Mine started around the time of my thyroid disease, just muscles in my shoulders and back aching a lot, needing massages. Started getting knots in my back that needed working out. I feel for him, it can be pretty hard dealing with it, especially when everything you try to do to help it seems to hurt it.

My main source of relief is my heating pad. That and massages are the two main things I can think of. I hope your son finds relief soon!