Lovebug

Hi Chaos......isn't that the truth regarding neurologists!?! Before I was diagnosed I was sent to a neurologist who ordered a Brain MRI. When I went back for my F/U and the MRI was normal, I asked him about Myalgic Encephalopathy (ME) and he didn't even know what it was! Ummm, who treats it if not a neurologist!?! lol!

Lovebug,

I too have chronic constant disabling severe abdominal pain.

Well, I must say that I've had some significant improvement over the past 6 months. I attribute it to hydration, my beta-blocker, & mainly my SSRI (Celexa). I take the tiniest dose of Celexa but it works. If I start having trouble, I increase the dose ever so slightly. I've only had to increase the dose once.

I can see where it would be difficult to convince your doctor to be concerned about this. The main reason is b/c our body temperature fluctates so much during the day, as well as the month. This means on any given day we can have a temp up to 99 or 100 without concern from a doctor. It isn't until a temp gets high enough to indicate an infection that a doctor would be concerned. Even a temp of 101-102 isn't a "huge" concern. I think the reason "we" feel bad with even a slight temperature rise is due to the Dysautonomia....our bodies just do not handle things correctly. Get this: I have small blisters on the back of my throat and constantly swollen lymph nodes in my neck that no doctor I've been to seems to care about. With high EBV levels, I thought surely there would be some course of treatment but to no avail...?

I hope you get to feeling better!

So, this morning she woke up with a fever of 104.4, which was pretty scary to say the least. She hasn't been above (or even near) 104 since around December, so it was quite defeating to see her body temperature get so out of control after months of remaining low-grade at worst. I immediately got the sheets/blankets off of her and turned on the fan. I felt around her body to check if she was sweating and there was not a DROP of sweat anywhere on her. Her skin was red and flushed on her face, head, neck, chest and arms, and was burning hot to the touch. Even the whites of her eyes were very red. I got a wet rag and started wiping her down, letting the water evaporate under the fan and trying to simulate the way sweating would work. Within 10-minutes she was down to 103.5 and another 20-minutes she was down to 103. At this point she was tired of having a wet rag on her so she decided to get up and try to drink some water, etc. Her temperature continued to fluctuate throughout the day but generally stayed between 101.8-102.3. Right now it is around 101.4 in our dark, cool living room.

We have an appointment with a neurologist next Tuesday and hopefully we can start working on figuring this out. I honestly do think that she is completely unable to sweat or cool herself down, which results in this hyperthermia-like state she can get into. It also seems to be greatly affected by times when she is anxious, excited or stressed, further pointing to something nervous-system related. I will let you guys know what we find out (if anything).

Yes...you were sweating for her (good job)! I so hope you find answers. You both will be in my prayers and please keep us updated.

Neshema, I know you said it helped your endocrine problems, but did you see any improvement in your POTS? I am trying to get my Vitamin D up right now.

I could feel a difference, albeit slight. But at the point in which I started taking it I was at one of my lowest points of being sick. I felt like I had a bit more energy (if you want to call it that) after taking it.

I was Vitamin D deficient also but am since resolved after a year of treatment. It didn't really jump up until I took the jumbo weekly dose (50,000U once a week for 8 weeks). Many of you should note that if you wear sunscreen, the sunlight exposure is pointless. Our society promotes protection from skin cancer (sun screen) but now we're all Vitamin D deficient! Irony, huh?

I experience this too. Especially when I'm lying on my back and turn to my abdomen......it's almost unbearable. I've been to an ENT (probably 2 years ago before I was diagnosed with Dys) and nothing was found. I had my carotids checked in the doctors office with no bruits so I guess this is all just Dys. It is nice knowing we are all in this together though. That is one of the reasons I love this place. It's like having an on-call doctor at our beck & call.

Hi Tennille,

I, too, have been thinking about you, worrying about you, & praying for you & the hubby. I'm so glad things are finally starting to settle for you. Hang in there. And please know that heart patients often have problems with their anger and they turn mean. I lived through it with my dad & my husband lived through it with his dad. Also, as a nurse, I've seen it from my patients. It does get better in time so take heart. Also, keep looking for a doctor that will treat you right. When I first got sick, I went to Mayo in Jacksonville and that doctor told me "if you tell yourself you are sick long enough, you'll be sick".....I was deflated thinking I had done this to myself. So I did what he recommended: exercise, exercise, exercise. I did strenuous exercise for over 8 weeks. Then my symptoms got worse and I knew something was really wrong.

We love you, keep us updated.

She sounds like an atypical dysautonomia case to me. If you look at your situation, she was in atypical circumstances (cancer, pregnancy, post partum, chemo) & no other causes were found after exhaustive testing. I certainly agree with everyone else here and think you should seek a doctor well versed in autonomic dysfunction & have more testing done but I'm willing to bet she has Dys which could have caused all of these crazy symptoms...or at least be a part of them.

It's ironic that you are in Computer Science as my husband is a Computer Scientist also! I completely understand your need for an answer and you have every right to get one. So keep trying until you find a compassionate doctor that gets her functional again...it IS possible. Besides, even if it weren't, you have a whole messageboard praying for you now!

You are doing the right thing by seeking out more help. If it's any concilation, most of us will develop a new, odd, or different symptom and run to this board to see if others have had it. But we are all so different too so keep that in mind.

Hi Jread! Welcome, Congrats, & Hang in There! Your wife definitely needs you and you've really stepped up to the plate. God has a special place for you, that's for sure! Regarding your wife's temps, it really threw me off at first b/c not many here complain of temps. There's lots of flushing and some that have low temps but my thoughts are this: Dysautonomia can affect ANY & EVERY thing that is automatic in our bodies. Anything that the autonomic nervous system controls can be affected. Thermoregulation is definitely a part of this and just b/c others don't have this symptoms doesn't mean it isn't the primary symptoms your wife exhibits. I would highly suspect Dysautonomia since the doctors weren't able to identify anything else (infection, etc)....it seems to fit (especially with the heart racing & high BP). And the weird thing is that who knows what is triggering that particular symptom in your wife!? It's extremely difficult to pinpoint these things.

For me personally, I have severe abdominal pain along with other symptoms (heart racing, tinnitus, high BP, fatigue, frequent sore throats, dizziness, numbness, brain fog, & on & on & on...). BTW, I had a high EBV (virus causing mono) when I first got sick and I was diagnosed with CFS. ALL of my lymph nodes in my neck stay swollen.

Prayers are sent to you and your family. I so hope you will be reunited with your little one very soon. And God bless your parents for filling in when needed. Please keep us posted b/c once you're here, you're family!

YES! I started out having these type of surges. My cardiologist put me on a beta blocker (Inderal). I also fluid load.

AwwwwRIGHT, Girlfriend!! Great news! Keep it up and know that you will have setbacks but it doesn't matter as long as you keep going. You know you have all of us for support!

Wow, what an amazing success story! Sounds like you have worked hard for it. All this talk lately is making me want to try exercising -- but where to begin!?

This is what I'm doing: http://www.hyperadrenergicpots.org/BENEFITS--OF---EXERCISE.html I'm up to 5 minutes...YEA!!!

Ernie,

Soooo glad you have found your way! I have never been to the point where I've stopped working but sometimes I'm just plain miserable. B/c my doc has me feeling better on meds, and I'm starting an exercise program of my own, I have decided to try & play the violin. It's never too late I guess and it is a hobby to keep me going.

The funny thing is I came down with POTS when I was at my MOST active. I was running between school and work, hardly sleeping.

My echo showed my heart at a normal size too.

Me too! And I've always been an active person...ran track in high school & college. I started working out with weights after college, as well as running. My mom said as a child I never walked anywhere, I ran! But I really started getting bad symptoms (mainly IBS stuff: abdominal pain/diarrhea) when I was working out 6 days/week for 8 weeks. I had to stop from the symptoms.

I have most all the symptoms you listed for your son with the exception of a few. And I'm one of those Dysautonomics that get tachy & high BP when upright. Before I was diagnosed, I had episodes (I call storms) where I had severe abdominal pain (sometimes accompanied with chest pain), pain in my flank (near kidneys), tachycardia (140), high BP (150/110), & extreme anxiety. They were almost like adrenaline surges and I could be lying down when I had them. My doc suspected a Pheochromocytoma but that was ruled out. When I finally got diagnosed, my cardiologist suggested fluid loading and a very, very low dose of mild beta blocker (inderal). I quickly improved. I also had a low Vitamin D which made my Fibromyalgia severe so taking that helped. I also went to a chiropracter & it helped some. Now I'm doing much better. I also take Celexa (very low, low dose) to help with my GI symptoms (mainly the pain) and it works. Good luck to you and I'm wishing for a speedy treatment for your son! Please let us know how it is going.

One thing you should understand is that Dysautonomia is the "mother" or "umbrella" of all the autonomoic diseases. Within it you can have differnt types of problems but they are all related to Dysautonomia. For example, I have: GERD, IBS, Fibromyalgia, Chronic Fatigue, POTS, & OI. Some things overlap and it can be confusing. But it sounds like your son definitely has Dysautonomia with a component of POTS/OI. With his GI disturbances...I'd say IBS also. Just remember that anything the autonomic nervous system controls can be affected (hormone levels, digestion, vital signs, brain function, basically...any & everything).

I somewhat agree with you...I was actually exercising strenuously when I first got sick. And then I quit and became worse & worse. I'm really good at pushing myself. I took a stress test at the end of January and lasted 10 or 15 minutes. I thought "this is great"...they even gave me some IVF and I shopped afterwards, felt great. Well, the next 4-5 days I was suffering, stuck supine in my recliner b/c I was orthostatic again. I had all my Dys symptos. My cardiologist told me I just need to go slow and realize that anything I do will take me longer to recover (such as surgery, etc). He recommened 5 minutes of walking (NOT walking fast)...just walking. Then to gradually increase it. I've started out with 3 minutes and will be increasing to 5 this week. I do 2 weeks before increasing. We'll see how it goes.

I am curious as to what Dr. Levine's program is...can anyone post what he says to do? What is his regimen?

I agree with your statements "feel like I am being blamed for having this illness"! For a while I was a recluse and I was accused of being depression or it being "all in my head". I finally had to say..."if you felt this bad, wouldn't you be depressed!?!". I even had a doctor tell me, "if you tell yourself you're sick enough, you WILL be sick"! Even my own mother thinks I just worry & stress myself out. I told her that it's hard NOT to be stressed with this and that this condition preceded all the worry. Furthermore...do we blame diabetics b/c their pancreas isn't working right? Do we blame cancer patients b/c they have an overgrowth of malignant cells.........how dare they!!!! What about stroke patients? **** them for having a blockage (or bleed) thus allowing a stroke. It MUST have originated in their heads (no pun intended)!Even for diseases that the patient could be blamed for, they get better treatment than we do: i.e. liver disease (alcoholics), heart disease (diet & smoking), drug users, etc. Sorry for the rant, lol!

Both your stress tests look to confirm S&S of Dysautonomia to me. Basically you have no ischemic changes (i.e. no heart blockages) yet can't tolerate exercise. I was the same way when first diagnosed...I couldn't sit up without a pounding headache (hi BP) and my HR being elevated. I was miserable. Once I found my cardiologist (who happens to treat Dysautonomics), I have been a different person who has been able to maintain work. It has taken me >6 months but I've improved gradually & am happy about that. One of the first things he told me was to fluid load (I drink 4L/day) and you need the sodium to hold onto the water in your body (otherwise you urinate it all out). I've never taken a salt tablet but try to eat things high in sodium...such as canned veggies, snacks, & table salt. You don't go overboard on it, you just need to replace some electrolytes b/c you dilute yourself with all the water you drink. Powerade Zero is a good choice to get fluid AND electrolytes but I can't tolerate it due to GERD. I also have severe IBS so I can relate on that point. Your best bet is to get a doctor that is empathetic and knowledgeable about Dysautonomia. Let us know how it goes!

Yes...I read your posts and it sounds to me that you were given way too much of a dose. My cardiologist told me he had a pt that had to CRUSH the 10mg and dip her finger in it to get a dose b/c 1/4 of the pill was too much. Therefore, I started out with a quarter of a pill and worked up to half. Then I worked up to half twice a day. You should start with a quarter. However, if you increase the dose and still have those bothersome symptoms, then obviously this isn't the drug for you. I just think starting off too high is a detriment. I certainly hope it works out for you.

BTW: I'm a nurse as well and can understand your concern for having a clear mind. I would suggest doing it when you have a few days off in a row. That's what I do when I'm trying ANYTHING new (including vitamins or activity).

I'm a nurse and I've documented "tolerated procedure well" many times and that means just that. But from the description (& all your complaints DURING the exam)...you did NOT tolerate it well and that should not have been documented. In this case, I suppose it means you didn't die!!!

Regarding your results, you sound positive or at the least you have OI. However, I'm not well versed in the art of tilt table tests (or reading them). I so hope you get the help you need. Try drinking tons of fluid to keep your BP down (worked for me). I drink ~4L/day. If I don't, my BP is high and I sometimes get a headache.

Check this out (may help): http://www.ndrf.org/orthostat.htm

[What dose benadryl do people take?

Years ago I took it as a sleep aid but could only do 12.5 mg (half a dose) - makes me nervous to try it if it is going to knock me out

If I ever take it, I'll start with 12.5mg or lower. My doc tells me "slow & low" and I mean, a very low dose!

The smurfs live in my back yard.

Cap'n Crunch is my father.

And I get ALL of my symptoms from sleeping in my dog's house every night.

LOL!!! I've had the same experience with the ER that you just described like 3 or 4 times (prior to my Dys diagnoses). Of course, one of those times I really needed to go b/c my potassium was low and causing cardiac arrhythmias. But my Dys Doc warns me to stay away from the ER as much as possible. He doesn't want them messing me up.

Thanks, everybody. After doing some reading around the site, I tried a Benadryl and it worked! Within two hours of taking it, I feel able to get air normally. That makes me think I better learn more about this MCAD thing.

Julie

Wow....maybe I should try that. See, that's why I love this place: ask & you will find answers (or at the least, camaraderie).

I'm not downplaying your symptom but I get this often. As a matter of fact, I had it so bad last night that I couldn't sleep. I have no clue what brings it on or how to deal with it so I just try to ignore it. If you have a pulse oximeter, check your oxygen levels. If they are normal, it is likely your Dysautonomia. If it is low (93% or lower) then seek help. If you "feel" like you need to seek help or that "something is just not right", you definitely should seek help. I agree with the others...a walk in clinic may be better than the ER. Please let us know how it goes.