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Weary

An autonomic attack

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Doctors now say to me "you've got alot going on". The odd thing, is they all started saying this at the same time. Even my lawyer said it for the first time. It's like there was some signal dispersed far and wide that I've now passed some kind of threshold.  I was not amused when new primary asked on the phone how I was doing. I said "hanging in there"; he chuckled and said Hanging in there not so bad when you consider all that you have going on.

on to the autonomic attack. This one was a bit different. I noted the steps as best I could. Sounds like  a migraine with aura but I don't think so:

Autonomic attack

Aug 19

 

Was soaking feet.  as usual in magnesium chloride and other things with 97 deg water as I do nearly every night when after 10 or 15 min feel felt like burning and I didn’t feel quite right. About 9:45 pm. Thought maybe was irritating feet since do it so often and removed feet.

Suddenly got a hot flash. 10 pm. Have not had one in a while. Note I do not think these are hormonal but a vasomotor instability due to dysautonomia and part of an aura.

(theres a couple of sites, but i'm too tired to find the links to paste them in)

Then pretty much immediately. head starting pounding. Migraine like pain but all over both left and right side and back of head like usual but also left nasal, a common site of nerve pain (ever since got the recurrent virus that started it).

Realized in retrospect has having heightened olfaction for at least an hour before hot flash, maybe longer.

Went to bed (11 pm), head a little worse including back of head pain

 

Took blood pressure (frequently do this) and saw my heart rate was lowest it has ever been – 51!  (Two weeks ago it had reached a new low of 56). My bp a little higher than usual but that happens day after certain foods. Usually heart goes up with attacks- now its going down?

My body temp either that night or next moning (can't remembe) was lower than i've ever seen it 96.9

 

Tried to sleep but was dizzy and felt like would pass out. Heart was also pounding.

 

Was too hot one second and too cold the next   Kept putting sheet and blanket repeatedly on off. Occasionally alternated so fast felt like was both hot and cold at same time

Feet started burning again

 

Tinnitus started.

 

(Note I checked my usual overnight visual aura and was a bit different with wider central black area but hadnt yet fallen asleep so cant really compare).

 

But did sleep (by about 12:15)

 

No zaps or interruptions and slept all the way until 5 am awake I think from noise or dizzyness. Every time I moved muscle in bed heart would pound. (Head still hurts)

Heart rate measures in morning:

 

     56    supine

     64   sitting   (right away)

     83 standing  (after half hour)

 

The next day, there was minimal difference in heart rate with different positions but ever since then, the alternating hot and cold has continued. I used to get that daily much of day- but it had stopped until Aug 19. Day after though big differences again.

Alot of my heart reactivity isn't postiion dependent necessarily, but with any movement regardless of gravity. that does not fit well into usual model.

My white blood cell count is down to 3.5 (normal in that lab 4-11); i think lowest its ever been. I asked the doc why I bother to get blood tests if all they do is ignore my numbers. Mentioned I keep collecting clues with lab tests, but then people ignore them or just repeat them until they happen to catch a normal value and then think "resolved".

Alot of foods cause jumps in bp as I mentioned. I think macadamia oil was latest culprit. too many food senstitivies to mention and wondering of glutimate more than tyramine main sources of trouble- but not sure.

Anyway, I choose i a good user name for myself. I really am Weary. Feel like i have been watching for a quite a long time now one body system declining. Would take too long to list them all. Generated a 10 page list a couple of months ago- and even since then more has cropped up. Ok, guess i'm through rambling. At some point soon, i have to stop reading medical journal articles ('m qualified to do this), stop going to a zillion specialists, stop taking lab teststhat are ignored anyway, stop taking EKGs whose abnormalities are ignored anyway, stop taking urine tests whose values are ignored, stop posting - just make myself comfortable as best I can and let whatever happen. I really have done what I can for a very long time.

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Curious: has your thyroid ever been checked? Not just the TSH but all thyroid tests. Have you ever found you underlying cause for your dysautonomia?

Encouragement: I know the bad days seem like they stick around forever, but they do get better. I know the feeling of doctors that don't listen.

My boss (who has a PA) told me a few weeks ago that the ranges are averages and 0.5 is something most doctors ignore because it is close enough. I think it is stupid but I kind of understand. When baking does half an ounce of extra liquid really make that much of a difference in your final product? On the opposite side, when measuring in a lab it could be disastrous. 

I hope things get better for you. I was doing great and I have noticed myself declining slowly the last month or so. I made an appointment to see my specialist, hoping for a med change and hopefully it will get better soon. 

I do the same thing as you. I question all my tests. I point things out. If the doctor dismisses me then I find a new one. I don't have time for a doctor to treat me as a lesser because I want to understand. And sometimes pointing it out can make them think of something new. 

Don't give up! Take a break if you need it but never give up. :D

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Hi @Weary - I am sorry you are not feeling well still. But maybe I can encourage you a bit: A HR of even 50 is not a concern but I understand why it bothers you. When I first got ill I did the same as you - the low HR concerned me when it showed on a halter monitor as low as 47. I was freaking out. Today I know better - it is OK if it goes down to 50, especially if it happens often.  What concerns them is if it drops suddenly, from fast to slow, with symptoms like feeling like passing out etc. --- The change in your EKG - I remember you mentioned in a previous post that it says "unspecific T-wave abnormalities" - is usually not of concern. I have T-wave inversions and since it is chronic and I had normal heart cath it is just one of those thing that my heart does. It depends what type of abnormality and in which lead. So - if you doc keeps dismissing the EKG then it might be that it truly is NOT something concerning. -- A low WBC is not necessarily concerning. My daughter has always a lower-than-normal WBC. Mine has been lower than 3 and no big deal. Elevated WBC often means bacterial infection and a very low WBC or a sudden drop in WBC is often seen with viral infections. You mentioned that you have a recurring viral infection - it may simply be from that.  My doctors are also not concerned about that. You said that you have been seeing many specialists and had repeated blood tests and urine samples done. If no one is concerned about the test results then maybe you should not either? --- I am happy that the HR readings you posted appear to be a normal change. We all have changes in BP and HR throughout the day and it is normal for them to change with position changes. Changes in temperature cab happen as well - and some people just have a lower-than-normal temperature.  --- I also know that warm foot baths can cause a drop in BP that can cause the symptoms you mentioned. Maybe that was what happened to you. Even healthy, non-dysautonomic people can have that happen. --- I hope this helps. Since you have been so thoroughly checked and nothing has been jumping out at anyone as a reason why you are feeling so bad it could maybe be a relief to you. --- I know several people that had years of unspecific symptoms after a very bad viral infection and nothing ever showed up. Sometimes the body changes after a big immune event like that and it takes long to regain balance. Hopefully that is all what is happening to you. Best wishes!!!

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@both of you 

Thank you very much for the encouragement. I really greatly appreciate it. I think i'm under the illusion that giving up means I will be able to rest easy, but it may well be false. The discomfort probably comes from the symptoms of this beast alot more than trying to troubleshoot it (not counting medical obstacles)

 

@stay at home. You are probably right- taking a break for a while then regroupting may be better than giving up. have not tested anything but tsh fora few years so not a bad idea to retest just in case - thanks - ditto cortisol which can produce fluctuating temps,. Agree on the finding new docs, but also lately finding thats exhausting. the symptom list is 10 pages so initiating each new doc takes so much effort and time. My new internist is amiable at least so perhaps that's enough for now. The PA comments don't help at all. I'm aware of what those idiots do and it just does not serve chronic illness well. They should be looking at trends ,e,g. , my recent drop in WBC, and also its bad enough so many of them ignore trends and only use "normal range" that then to further say " well, its close to normal so lets ignore that too". the ranges are supposed to be 95 percent confidence itervals (95 percent of "normals" fall in that range) but both the reference population as well as a different confidence intervals, e.g. hospitals set the range so that its harder to fall outside of it, and at the other extreme, docs who run their own labs set the range so that it's easy to fall outside it, and chain labs like quest and labcorp are in the middle. It's impossible for docs to keep up with the literature like I do, so what bugs me is when they are not open to considering the new research they know nothing about. Anyway, i think i'm rambling again. Thanks again

@Pistol  As said above, thank you very much for support. But as I said in another message (you may have missed it), for some reason you and I are like polar opposites on our views! Maybe i should be clearer - the concern is not that I'll have a heart rate of 51 one second and be dead the next, the concern is that this reflects that this beast has not stabalized. It's a marker things are  not improving, and likely shifting as systems try to accomodate the new normal. Also find it really absurd that you say if theyre not concerned about test results, then i shouldn't be either! Do you think these folks care if I or you live or die? They just want to avoid lawsuits and get thru the day. Perhaps the good ones will be interested by something. But that's the limit of it. Low WBC is not normal for me; they should be looking at trends. And yes, occurred to me might be my recurrent virus, but instead of thinking "its just that" like you do, i'd say this is then prime opportunity to figure out exactly which virus it is since its accomponyed by distinct symptoms. Perhaps its any virus would make dysautomia worse (as is well known) but there may be a tighter link as i suspect direct damage from virus to peripheral nerves. there's been uncertainty  as to what the virus is. so now if we wait until my wbc normalizes, we will have missed yet another opportunity.

so as always, you and I just don't agree on anything! except of courfse wishing all of us recovery.

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@Weary - I am just wondering: what condition or group of symptoms do you refer to as " the beast"?

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I occasionally take breaks. When I am stable enough I don't deal with any doctors for a few months. Just because dealing with them can be so exhausting. Finding good doctors are so hard and just getting to them, being rushed out, and being made out like you are crazy is just exhausting. I am currently back into trying to find out what is my underlying again. I am seeing my specialist tomorrow with the hopes he can help me to at least be pointed in the right direction. I am sure I have autoimmune but the tests keep coming back negative and I can't prove I have it or what kind. 

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I alternate as well- I refer to it as going back on the doctor circuit. I do better when I stay away for all those reasons you list as well as recovery time, but then perhaps i forget, or new crops of symptoms make me want to branch out again...and back on the doctor-go-round I climb. I try to avoid flu season (as well as first few weeks after schools are in session becasue bugs fly then too) so am trying to cram in a bunch now.

In my case, I have established AI disesase, so dysautonomia blamed on that. That can have a downside too, since no one will believe me these symptoms started with a recurrent virus. as far as theyre concerned, they have their little parsimony story. Some of them still want to rule out pheo , even though only 1 percent of people with my symtpoms and test results will have pheo, cause their med training says so. But if its not that, they ignore it.

Which specialist are you seeing tomorrow? i have an appt with one of my rheums tomorrow. Not sure why I made the appt. haven't been to this  one is 15 months and part of the circuit seems to be to go back occasionally just in case you end up needing them again. Going to be tricky as bp way up today from some foods. not sure what tomorrow will hold. if i'm hypertensive crises at these places, they get all flustered and nothing else gets done.

Still need another cardio, and now for first time need a derm...have a new patient allergy appt end of sept (check out mast cell stuff), back to retinal specialist early november, a different rheum in decemeber..,likely another go round for bloods in november, thinking about a particular integrative doc but don't have the energy to give him all my med records (and he's super expensive), thinking about a neural evaluation (will cost me 3,000 bucks) and lots of energy, thinking about a dsyautonmia center..I went from the best full time job to the worst full time job. .

good luck tomorrow

(pistol: by the beast, just meant a general term for all the med stuff going on with dysautonomia. i think some parts of the dysautonomia more uncomfortable than other parts; eg. adrenal excess that won't shut off is unpleasant, the weird heart rhythms unpleasant; makes it hard to just enjoy the moment.

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I am seeing a neurologist. He is the only POTS specialist in my state. I need some med suggestions since mine are not working as well as they used to. And I am hoping he will have some ideas for underlying. Autoimmune runs so high on my mom's side and I have learned some new things since I seen him in January so I am hoping at the very least he might know someone good in my area. Or maybe he will suggest Vanderbilt or Cleveland Clinic to try and find my underlying. 

I found out my grandmother had the jak 2 gene which caused her myleofibrosous (not sure on spelling) and one sister has Sjogren's and Lupus and another has Hashimoto's. Plus I have a rash that has been moving and irritating me since April. It is the longest it has been around. Dermatologist just keeps throwing creams at me. I am also coming across information that what is normal for me is abnormal for most people (back pain and noisy joints). 

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3 hours ago, StayAtHomeMom said:

Plus I have a rash that has been moving and irritating me since April

Any chance that Dermatologist would be ready to do a punch biopsy of the rash?

Long shot, but worth asking, especially if they were reminded of your family history with autoimmune. Might lead you to some answers regarding those autoimmune issues. Or, they might want to wait it out. Hope you get one that wants to be more proactive. I know what it is like to want answers.

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7 hours ago, KiminOrlando said:

Any chance that Dermatologist would be ready to do a punch biopsy of the rash?

Long shot, but worth asking, especially if they were reminded of your family history with autoimmune. Might lead you to some answers regarding those autoimmune issues. Or, they might want to wait it out. Hope you get one that wants to be more proactive. I know what it is like to want answers.

She did when I first seen her a few years ago and diagnosed me with polymorphic light eruption. Most people get it when they go on vacation and their bodies aren't used to that much sun. And she did an ANA that came up negative. My thing is I have been getting it almost every year for the last 7 or 8 years. And this year has been worse. It covered my face (first time that happened) then it disappeared after a month and showed up on my forearms. I went and seen her and she gave me another steroid cream and it cleared it up but then it showed up in my upper chest and shoulders immediately after. It is itchy and obnoxious. The longest it has ever showed up was 2 weeks and it resolved on its own except this year. 

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8 hours ago, KiminOrlando said:

I think I remember you telling me that. 

It sounds like something is brewing though. Waiting for it to erupt is so difficult. 

Hang in there.

I am hanging in there :) I am physically and emotionally in a better place than I was 2 years ago so that is the upside. 

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