Shane

Extreme hypersensitivity and internal anxiety. Glass drops, loud thunder I literally start crying. Hyperventilate easily, cold chills in my back all day but my body is warm. Heat is horribly uncomfortable, not that my system can't handle it seems to bring out my anxiety. Fingers tremble for no reason at all except I am a bit keyed up about something. Its like any normal level of excitement sends my body sensations over the edge. And when I (say) come home from being out somewhere my body just crashes.

Saw Dr. K in Hartford today. What a wonderful doctor, I highly recommend him to anyone in the Northeast that can reach him. He says that likely the tests at BIDMC will come back negative (I kinda already assumed that given the chatter between the techs during the tests) that I don't have autonomic dysfunction, but I do have autonomic over-excitation likely due to chronic hypervigilence about my symptoms post my tick-borne illness last year. Curiously he agrees that the symptoms are being triggered by an underlying anxiety I don't really have control of "mentally" much the same as PTSD. He is recommending I get to a psychiatrist to see about meds to address this. I assume this means an SSRI/SNRI/Wellbutrin, etc. Anyone care to offer up some recommendations what has worked for you?

@StayAtHomeMom thank you. Yes, standard thyroid workups(normal), serum cortisol (a bit high), norephrine/ephrenine plasma (normal), CRH Stimulation Test (normal). I did my own saliva cortisol (3 pm reading was 2x higher than normal) and thyroid panel (T4 Free was a bit high as was Reverse T3 high) but the endocrinologist pooh-poohed them.

Went to BIDMC today, had my tilt (45 min) repeated, Valsalva, a palm/foot skin potential shock test. I tolerated everything well, only got slightly dizzy for about 5 seconds on tilt. The technicians did the tests not the Dr.s which I was disappointed about, but if I read between the lines from their comments is that I had the proper responses and went so far to say I would make a good physiological specimen for normal results. Unless they were just blowing smoke at me (I doubt it) I think all negatives. They said I'd get a call when the Dr.s reviewed the findings. I guess this is good news with a negative tilt at Yale as well. It seems the HR stayed around 90-100 and BP 120/75 can be ruled out as they didn't seem to spike/drop. Only worry here is they don't do the QSART but I don't really know what that would show as I seem to sweat normally. So with all negative on cardiac, pulmonary, and endocrine, still can't explain the fatigue (especially before 5pm), almost fall asleep after meals, low body temps, morning chills, poor temperature regulation, heat intolerance, high level of unconscious anxiety/startle and SOB/hyperventilation. Thinking of having this PCP prescribe Wellbutrin as maybe there is a psychogenic angle, can't hurt to trial as it should give me energy and reduce anxiety. Only other possibilities that seem remote like sleep disorder, gastrointestinal, autoimmune, metabolic, I guess ...who knows I'll just keep turning over rocks.

@Pistol thank you. this is interesting, even though the endocrinologist has been returning negatives so far, I got my saliva cortisol test back and 3 of the 4 samples were normal BUT the one I took at 3PM was 2X normal. I don't think that is just a coincidence when I normally "crash". Also, I had ordered a Thyroid panel which was pretty normal except High T4 free and High reverse T3. Pretty sure the medical community (and my endo.) could care less about those readings, but it makes me wonder. Hopefully, the CRH Stimulation test comes back next week, or I find out something at BIDMC when I have my workup on Thursday.

@everyone thank you. descriptions are great. I think the only way I vary from what you are saying is when I am out I don't feel like I a making much effort or tension to walk, sit, etc. my HR is up at bit (90-95) as you'd expect going to doctor and such, but I just "feel" better. In fact, since this happened when I am out I'd argue I use roughly the same amount of energy when I am home (try to walk the house around to get steps on my Fitbit up) and not like am at a job, or stressing my body that much during an event. Even weirder, this was happening in a smaller way, before this acute event. Days I didn't have class I felt worse that when I went to class all day and my best days were when I came home around 6 vs. 2 (granted then I just did "feel" as good no crash). Actually, the more I think about it this pattern (albeit different in intensity) has been happening for a long time.

@JillCT My own experience is I did a home TTT and had much the same result you are describing (which I think would meet the criteria for POTS). However, I went to Yale and got the TTT and it was negative. I've been concerned enough about my symptoms that I am heading to Boston (BIDMC) to be retested and have additional ANS testing. Others probably have better advice, but having a real TTT will probably get you more answers. I wish you luck and health.

This may sound weird, but I have noticed something strange... I am around the house all day (alone nothing to do), I get fairly fatigued but I don't "crash" (meaning not laid up on the couch all day) OR... I leave the house for the day, feel pretty normal (almost never fatigued during the event) but within minutes of arriving home I crash (laid up on the couch) The strange caveat here is if I arrive home at 2pm I crash WORSE than if I arrive at 6pm! So it isn't like the amount of energy I expended has anything to do with how fatigued I am...like home just triggers it. It seems the more engaged I am, the much better I feel (physically). Almost like coming home or not being engaged in something gives me some kind massive metabolic or adrenal drop that wipes me out. People have told me this might be depression instead, since this pattern has been going on to a lesser extent even before I developed acute ANS symptoms two months ago. At some level I am inclined to agree, although I don't "feel" depressed I just can't see how ANS dysfunction could affect me in the strange way. Thoughts? Thanks.

@WinterSown thank you. should have specified, Boston. @RecipeForDisaster thank you. I will call back can't imagine they will only do TTT (although that is all Yale did)

I got a referral to BI, but when they called me for an appointment they said (contrary to what they told me in the initial call) was that they only do the TTT. Has anyone been there and got additional test?

Just managed to get the notes from my TTT at Yale. "After 10 minutes supine position, the patient was elevated to the 70 degree position for 35 minutes, with no contiguous heart rate or blood pressure recording. There were no symptoms. There was no significant change in either heart rate or blood pressure. Impression: Normal Tilt Table test" Of course, I am assuming TTT is really testing orthostatic intolerance (and I guess the ability of release whatever chemicals are required handle the postural change). Hopefully, the further autonomic testing at BI will hone in on the temperate regulation problem. Only other hope is the endocrinologist finds something when I do the CRH Stimulation test. Funny I am guy, but I think this must be what woman feel when they hit menopause. Trying to think if these two avenues come up negative, what is another source of this.

Ever since this started two months ago I've not been able to control my temperature. The only relief I get is sleeping (never a problem) and most nights after say 9pm. Cold from (literally) the first move my body makes as I wake up (temps usually 96-97.5). Going outside in the heat, or worse taking a shower will crush me for the rest of the day. If I do manage to warm up, it seems my body decides "warm" is "hot". I have to fan myself or not make a move until I feel somewhat comfortable again. Upping or lowering the thermostat in the house does nothing as "cool" becomes "cold". What is weird is when I travel to the doctor appointments (or anything that is scheduled and not passive) I don't feel that cold, but when I arrive home, boom, I start to feel temperature regulation issues again. This is freaking me out a bit. Does anyone have reflections on this, or what techniques are you using to deal with this? I've read Mestinon and possibly other drugs might help with this, but certainly can't self diagnose this till I get a full evaluation at BI in a few weeks. I'd suffer every other symptom to not have to deal with this one, its debilitating to the point all I can do is curl up on the couch or walk around a bit when I can handle it. Thanks.

@KiminOrlando thank you. It was taken at 9:00 AM and apparently was a bit above normal. Don't know the exact number. Can you give me an example of a metabolic type disease?

@ks42thank you. I will ask the Endo about this, I do know from reading on this Reverse T3 is basically ignored by most Endos I only found it by paying for the labs myself. @yoginithank you. That is helpful, I only am bothered with the head rush/pounding for like at worst 30 seconds, and as I said I could stand for hours. Also, would agree with OH but I just tried a poor mans OH test at home and no change in BP, as well during the TTT my BP stayed constant as well. In the running still for me are: 1. orthostatic "something" 2. Endocrine 3. (maybe I guess) CFS 4. Looking for something else like (say) sleep apnea but I don't see at 21 and not overweight and I don't snore so seems remote. Can't shake the fact that I am just hammered by hot showers, wake times/morning are brutal, and fatigue doing nearly nothing (plus no diagnosis after all these tests) just seems like autonomic dysfunction to me.

All endocrine tests, TSH, T3 free, Antibodies, serum Cortisol ... all normal.. T4 free (above normal), Reverse T3 (above normal) Endo seems unconcerned. Have CRH stimulation test next week. I assume if I had a thyroid problem it would already have shown up.

So frustrated. Called the cardio back, they said since the Florinef didn't make any difference, there was nothing more they would offer. I asked for a referral for sweat/valsalva,etc. testing (since I already had the tilt) or at least someone they knew that had experience with autonomic issues...they said to get those tests you have to go to the ER, ***!! Ok, so whats the plan, I guess I will take 3 showers in a row, take a 5 mile walk in 90 degree weather and then plop myself down in the Yale ER.

On the phone with the other cardiologist in the group I saw. He said you should notice "something" within 10 days.

Sorry for the dumb question. But what is a "surge". Is that like an massive adrenaline rush or something?

Thanks everyone. I've been thinking if wasn't being bombed with low temps 96-97 (basically all day), I don't think I'd really be that non-functional. My body just doesn't feel warm ever, except maybe at 9-10pm. Seems to burn all my energy all day. I have noticed my resting heart rate is often around 55, do know that it matters. Has anyone had success with a drug that helps with body temps?

Really scratching my head on this one. As I have said I was negative on the TTT for OH and POTS, but really believe there is some ANS dysfunction here. I don't get blood pooling in my legs, I do get a bit lightheaded (initially) when I stand up (HR settles quickly never tachy), I could stand up for hours, not suffering most of the other orthostatic symptoms, but... I take a hot shower, step out and dry off...might as well go to bed I am gassed. I wake up in the AM after a great warm sleep, on first movement I get a chill in my back and suffer with low temps for at least 1/2 the day. Fatigued and feel like its 9PM all day. Its like my ANS doesn't know how to vasoconstrict anymore (strangely I'd assume I have blood polling or worse dizziness) I've read the factor "sympathetic withdrawl" which seems to say that part of the ANS isn't getting activated. My theory is lack of vasoconstriction is causing these symptoms and robbing my energy... does that make sense?

I have been on Florinef .1mg QD for 6 days no real effect, cardio upped it today to .1mg BID. What is a typical time it takes till I'd start seeing an effect? Thanks.

Yes, TTT was before Florinef. HR did increase on TTT, but didn't sustain or hit any level to call it positive. Thanks.

I've been watching my BP the last week rarely is more that 10 off in either direction, is 110/70 considered low BP? My cardio put me on 0.1mg Florinef 1x, even though my BP didn't change much in the TTT (presumably because of low blood volume). Also, been watching my HR on the Fitbit and I average like 55-65 lying or sitting, 75-80 walking around with an occasion short spike to 95-100. Even with a negative TTT, can you have POTS with what is (I assume) such a low HR?

TTT was negative for both tachy and hypo. Cardiologist 2 days ago put me on Florinef (0.1mg 1x) anyway because it still seems symptoms point to low blood volume. Endo has done every workup (negative except slightly high T4free and RT3) except CRH Stimulation test, but may wait as I'd have to get off Florinef for a couple days. I have been a bit low on potassium over the past year but ok lately. I'll see how it goes, but want to be prepared for next step, because I am basically home bound other than doctor visits (strangely I feel less symptoms when I go there, but crash a bit most times I come home) Symptoms: 45 days of h***. Low core body temp in AM 96-97 improves by late afternoon, palps 24x7 inescapable, SOB better as the day progresses but always there, severe head rush on postural changes that has improved as time has passed (still there though - a bit tachy but always settles down), eating causes SOB, later meals better, energy pretty much in the crapper. Cardiologist knows EP at Hartford hospital if I need to go that way. How long is the queue for Vanderbuilt, Mayo, NYU Lagone, etc? It seems like it freakin' 6 months. Just want to keep all options open. Thanks.

One thing I have noticed is that my palpitations never seem to go away 24x7 (since they started 2 months ago) even when standing/sitting/lying down (and I'd argue they are just as forceful and don't follow my heart rate whether its 65 or 90). I've read they should abate when supine. Also, I have read that is common observed difference between POTS and Pheochromocytoma (and possible other conditions). Does this make sense?