Something Attacking Autonomic Nervous System??

[Godsgal]

Saw a top Neurologist in the area yesterday. No MRI's, CT scans, blood work done so far is showing what's wrong with me. I have POTS, blood pressure swings, high heart rate, burning skin, breathing difficulties, circulation problems, body temp fluctuations, shaky hands, muscles twitches, vision changes, can't do physical activity, hives, large sudden lump/tumor in leg. It came on very acutely.

He thinks something is attacking my autonomic nervous system. Maybe a virus, genetic issue, or the mold that I was living in is causing it.

Anybody have ANY experience with this???

I tried to go see a POTS specialist this morning and my blood pressure in the car went from 85/68 to 140/98 in 10 minutes. I had to come back. I was pretty nervous. Would that have triggered the change????

I think I may have MCAD also.

ANY THOUGHTS FROM ANYONE WOULD BE APPRECIATED. I feel like I'm dying over here! I'm only 29 and have 2 young ones 3 and under.

[lieze]

I just wanted to say we were also living in mold when my symptoms started.

It got so bad I could not breathe in there at all.

I continued to have symptoms in two other houses so I couldn't figure it out.

Maybe we are just running into mold wherever we go?

[Godsgal]

I just wanted to say we were also living in mold when my symptoms started.

It got so bad I could not breathe in there at all.

I continued to have symptoms in two other houses so I couldn't figure it out.

Maybe we are just running into mold wherever we go?

Did your symptoms get better when you were out of the mold? I've been out a little over a month and I feel like I'm getting worse!

[lieze]

Did you get your mold cleaned up?

I guess I should have asked or have you moved out?

I think that is the first step.

I would definately get the spot on your leg looked at.

I have been living with with this for two years and I'm still alive.

Since initial symptoms presented I have gotten gradually better my biggest problem right now is just my stomach/weight loss/weakness.

I've developed a lot of food allergies since so be careful.

I carry benadryl.

If you start to have a reaction after you eat where your face turns red, heart starts racing etc you might be having an anaphylactic type response.

I had no clue and just ate expecting to be normal and would be hit with periodic symptoms after eating.

Spices get me especially garlic and onion.

Keep posting-I'll keep an eye out for you.

Try not to stress, investigate symptoms that pop up.

Don't be surprised when tests come back okay but at the same time keep reporting your symptoms to your doctor.

Don't be surprised if it's always changing.

You're not crazy-and it is scary.

I'm 44 and feel more like a 4 year old at this point emotionally.

[lieze]

No I did not get better.

Symptoms continued.

If I went back to the house it was all I could do to go in.

It would feel as if my throat was closing up in me.

We got it cleaned up.

At first my doctor thought I had POTS now she's not sure.

I have not had extensive testing.

[Will_I_am]

Godsgal,

Sorry I can't help.....I belong to the What is it club? I too have the bp swings like that at home,work, or Doctors office. I also have some of your other symptoms too but not the hives or tumor. You said the Doctor did blood work has he done an ANA Titer blood test for lupus etc. Look up Lupus and autoimmune diseases and compare symptoms with yours. Have you seen a rheumatologist? Hope you feel better and can get some sort of resolution.....Best of luck.

[janiedelite]

We discovered a huge mold problem in our house a year ago, moved to my parent's while it was getting cleaned up professionally, and within 2 weeks of being out of our house I had an increase in energy. The mold wasn't CAUSING my POTS but was certainly contributing to the fatigue.

There tests that can be run to check on issues that might be underlying your autonomic problems. My local docs ran as many as they could like autoimmune issues, diabetes, etc. However, I did have to travel to Mayo in order to be really comprehensively tested. Is there any autonomic specialists near where you live? Maybe they could do genetic testing and/or test for any underlying causes?

Maybe your current neurologist would know where to refer you? Also, on the DINET main page there's a link to a list of physicians in most states who specialize in dysautonomia.

[lieze]

I get very worked up in the car also-if you can get someone to drive you.

Just lay your body back and try to relax as much as you can.

Take slow gentle breaths using your belly.

I imagine I have a little balloon in my belly that fills up with air and then all the air comes out.

This condition has really done a number on my anxiety level. It is really difficult to differentiate what is nerves and what is actually physically going on with our bodies.

Hang in there.

Big hugs.

[MomtoGiuliana]

I think many of us are living with this syndrome without an answer as to the cause, unfortunately.

All the symptoms you list (eg the lump) may or may not be due to the same cause, of course. so that makes it all even more confusing.

For a lot of people, POTS worsens when allergies are out of control (according to my dr). The hives sound like you are having an allergic reaction (obviously). A number of patients on DINET have been diagnosed with MCAD diagnosed by episodes of flushing and abnormal increases in urine methylhistamine.

http://hyper.ahajournals.org/cgi/content/abstract/hypertensionaha;45/3/385

As far as bp shifts, 85/68 to 140/98, could be explained by severe stress in almost anyone--however this sort of shift is also common in dysautonomia patients. Did you have other symptoms as well that made you decide to turn around? Has your dr told you that a bp of 140/98 is dangerous?

One thing that happened to me for awhile (while I was sicker than I am now and all of this was new and very very scary) was that I checked bp and heart rate a lot and got alarmed, a lot. This created a negative feedback loop, for me. One thing that helped me was to learn some breathing techniques (eg read Spontaneous Healing by Dr. Andrew Weil for guidance on this) and visualization techniques. B/c bp and hr is also affected by emotion. (This is one reason we get misdiagnosed with anxiety and depression instead of a physical illness!).

Hope you get some more answers and get treatment so that you feel better soon. It is especially hard to be so sick and also be a caregiver to young children.

[lieze]

I check a lot too and what I see is I do get wacky but I seem to come back to normal fairly quickly so I'm just kind of all over the place.

Did you get a floaty disoriented feeling as all this was happening with an overall feeling of fear.

That is the thing that gets me most.

Sometimes if you can just pull over you can get your bearings again.

I have felt that way driving dashed home and the moment I hit the driveway and start walking in the house felt all of that going away.

Sometimes it does take longer and I do have to lay down.

It's a horrible feeling.

Seeing the wacky vital signs increases the element of fear.

And let's face it having your blood pressure going all over the place does not feel good at all.

[Godsgal]

I have been out of that house now for a little over a month. I started getting burning skin episodes (like hot flashes) while I was there and the near fainting episodes. Two days out of the house is when I was hospitalized the first time and I haven't been better since.

Family was driving me through the everglades and I decided to turn around because my condition is so confusing and I was afraid of being an hour away from help in the middle of a swamp with my blood pressure all over the place. Plus I was getting hot and cold, back and forth. Miserable. I wouldn't have turned around had I not been in the middle of nowhere.

Nobody told me it was dangerous to have bp at 140/98 but my cardiologist's assistant told me it was dangerous for it to go up and down by so many points (from 85/68). It's frustrating ya know???? I'm so new to this I don't know what to do when this stuff happens to me. Nobody really explains this stinking condition to me and I have to wonder about the symptoms. It's terrifying to suddenly be living with a wheelchair at 29 and top doctors tell you something is attacking your autonomic nervous system. I'm beginning to realize that this is a miserable condition that you have to live and suffer with at home. It's very challenging. And my mother in law doesn't understand it and tells my husband I need a psychiatrist. That doesn't help either.

But I absolutely LOVE this site and the incredible support everyone provides me. I love knowing no one is going to judge me and tell me I need a shrink!

[jenwic]

I am wondering with your symptoms if part of it is MCAD, like you said. With that you can have "allergic reactions" or anaphalactic reactions to most any thing. Some of the way you're feeling sounds like my allergic response to peanuts (blood pressure swings, faintness, weakness, shortness of breath, no energy, fast heartrate.) Taking Benadryl helps me when I feel really bad. I know you probably don't want to add more meds into the mix, but I still wonder if an antihistamine might help.

[lieze]

My blood pressure fluctuates quite a bit as I said and for a person with POTS my understanding is that is normal.

If I get a wacky reading I do not worry so long as I see it come back to a normal level.

And I do maintain that normal level most of the time.

In my case I like to get up and move around a bit on a good day I will see a 105-110 systolic with light activity around the house and that makes me feel good to get my blood pumping.

Getting in the car to go anywhere though 9 times out of 10 I can become a basket case.

One of my initial problems while driving was hyperventilating, seems I'm taking a break from that.

I don't blame you one bit for turning around.

Try to focus on finding a comfort zone and then slowly expand that if possible.

Many things just like that appt can wait for another day or there might be a better opportunity.

[nmorgen]

Hi Godsgal,

I was wondeing what meds youa e cuently taking and what type of POTs you were diagnosed with? My blood pressure can jump up pretty high. Yours doesn't seem that high compared to some of my bp spikes. I also get flushing and hives, which I believe is probably mast cell activation. All of your other symptoms seem pretty aligned with POTs except the tumor. You should really have that checked out.

Try to relax and not stress out too much. It just makes everything worse. Good luck and I hope you get better soon.

[Dizzysillyak]

Hi ...

I'm not sure if anyone else has told you this yet but IMHO, gluten should be your first suspect here. In fact, if your nuerologist doesn't know this by now, you may want to change nueros. Other foods such as casein, corn and soy are problematic for a lot of people too.

I'd also look at other possible toxins though. Do you have toxic mold ? Are you being exposed to low grade toxins regularly ? What are you eating ? What drugs or supplements are you taking ?

Foods seem to be a big contributor to toxic effects so getting these out of your diet could help you within a few hours or days. Things like aspartame, High fructose corn syrup, dyes, hormones in meats, etc ...

IMHO, A diet of organic fresh meats (no deli meats), fruits and veggies would be the quickest way to see if it's something you're eating ... Within 24 huors of cleaning up my diet, I didn't feel jittery all the time. Just look at my signature to see what else has improved ...

Drugs and supplements can contain toxins too. In fact, I'm still finding that I can't tolerate most supplements because they cause me to feel so revved up that I can't sleep at night ..

hth ... Marcia

[cmruls]

I agree with you. Gluten(wheat), corn, milk(diary) and sugar all set me off. I believe these cause an allergic like reaction/intolerance. Try an elimination diet. Eat fish, fowl, meat, fruits and vegetables. More protein and less carbs/sugars. I feel much better when I make better food choices.

[Godsgal]

Hi Godsgal,

I was wondeing what meds youa e cuently taking and what type of POTs you were diagnosed with? My blood pressure can jump up pretty high. Yours doesn't seem that high compared to some of my bp spikes. I also get flushing and hives, which I believe is probably mast cell activation. All of your other symptoms seem pretty aligned with POTs except the tumor. You should really have that checked out.

Try to relax and not stress out too much. It just makes everything worse. Good luck and I hope you get better soon.

Hi...I have no clue what type of POTS I have. No one has ever told me. I got the serum tryptase level checked and mine was normal. I have so many of the symptoms of MCAD I was shocked. Not sure if there is another way to check me out in that way. I'm taking Toperol, Celexa, Midodrine, and Fludrocortisone.