Matter Of Time Til The Word I Was Dreading To Hear

[Bigskyfam]

Blue. Interesting! Yet so simple which came first anxiety or pots. I started seeing a counselor before my pots initial flare. I think I've had pots for a while and those little "anxiety" flares were actually the syndrome making a peek into my life.

I remember my counselor saying wow you are aware of your stressors and surroundings and are level headed. Which makes me believe it's pots symptom.

[gjensen]

I had some flares early on that I called anxiety attacks or panic attacks. This was before I knew what was happening. It was one of my first clues something was wrong. Looking back, these spells were all dysautonomia. I just did not know what was going on. It is scary when you do not what it is, and none of the doctors could tell me what was going on.

Once I started figuring it out for myself, I started settling with it. As I began to understand what was happening, it would not bother me (emotionally) as much.

Half of the battle for me is understanding.

I have some new things going on that trouble me. It is not as much the discomfort, as the not knowing what is going on. Until I figure it out, or it is explained to me, I will wonder.

[Katybug]

Bigsky,

I was reading up on prostaglandins due to some MCAS business I discussed with my doc. In my research I started finding articles (several on PubMed) regarding prostaglandins being a major factor in dysmennorhia (I know that spelling is wrong but I can't get it straight in my brain just now). The articles went on to talk about using COX-2 inhibitors (like Celebrex) for relief. I know you have been looking at all your options so I wanted to mention this info to you so you can look into it and talk to you docs.

The doc I spoke to just heard a talk by a major mast cell expert regarding the fact that the prostaglandins released by mast cell degranulation cause cognitive dysfunction and that the doc has had success with some patients that were tried on an aspirin protocol as a prostaglandin inhibitor. I have been having severe cognitive issues following a bad bout with my gi tract (all suspicious of MCAS). I've taken only a quarter of the dose called for on the aspirin protocol and it feels like someone gave all my brain cells back, the drunken feeling is gone, my IQ feels back to normal. All in 3 days.

I can't live on daily aspirin especially right now with a surgery coming up, but I am very curious about this mast cell/prostaglandin connection now that I've started this research.

[spinner]

See, theyre right in a way. Your' body is extremely anxious although you have no psychological

disorders.

Anytime you are sick your body is anxious. It is telling you it is sick because it doesnt work the

same way it has for your whole life.

I got sick when i was 50. This is a very common age to experience a first serious medical

issue. Naturally they told me i was "anxious" when i couldnt breathe right (palpitations, pvc's,

neurological inflammation, sleep apnea, sudden onset, extreme heat/exertion sickness, etc).

I WAS anxious. But i was also sick. I knew exactly how my body worked and i knew something was wrong with it.

The diagnosis is pure **. WHY are you sick and therfore anxious? Its the same with "panic attacks". Its not that you are panicking psychologically. Your body is essentially going into a form of shock. An autoimmune response. And autoimmunity is fairly far along in terms of actual sickness.

[blueskies]

Anywhere from 3 to 5 minutes after I get into bed most nights I have an 'anxiety attack.' Heart rate increases, body feels like it's vibrating/inner restlessness (hard to explain the feeling but it's a symptom of an adrenalin rush) and I get anxious. Getting up and taking a few steps stops it immediately, I figure I'm using up the adrenalin by expending energy). If I stay lying there it will last a couple of minutes (not sure of time frame but it feels like a couple of minutes) and then die down. Then I go to sleep.

It doesn't happen every night but it happens most nights. On the nights I remember, as I'm getting into bed, that it's probably going to happen it doesn't catch me unawares and I feel a bit less anxious, but still v. uncomfortable. On the nights I don't remember to expect it, I feel much more anxious when it happens. It's an unpleasant feeling.

Way back when (pre pots diagnosis) docs told me it was panic attack. But it's obviously not, as far as I'm concerned. It's a weird thing my body does as it's relaxing. It can happen in the daytime too when I start to doze off on the couch. And it can happen when I wake during the night and need to get back to sleep.

Between this feeling and the body jerking (increased myoclonus maybe) that I've experienced lately it makes getting to sleep a journey, that's for sure. Both 'anxiety attack' or body jerking can happen if I happen to doze off on the sofa during the day. If it's day time I'll usually think, stuff this, and get up/sit up and go on about what I was doing before getting sleepy rather than trying to relax enough to doze off again. It's double whammy when, as I'm going to sleep, I get the anxiety/adrenalin rush, get over that. Then find myself relaxed again, and increased myoclonus jerking kicks in. Then I'm fully awake -- again. And just exhausted.

blue

[Lethargic Smiles]

The cardiologist that referred me to Mayo set my appointment for 6 wks after the Mayo appointment. If not for the Mayo trip, I would have been ok with that. I just tend to feel that with him being the referring physician, he would be interested in the outcome. To me it is a red flag, and revealing.

I just wanted to throw it out there that it took a few weeks (I think maybe 4) for the complete write up from Mayo (includes all of the testing, testing interpretations, doctors notes/impressions, treatment plan, recommendations) to get put together and sent out to me and my doctors. An EDS specialist I saw in Chicago who does a thorough write-up said to allow 3-4 weeks for his report. If your doctor knows this, maybe that is why he scheduled it a ways out from your return.

If when I am in a doctor's presence, I do not feel respected and as though my concerns are being taken seriously, it doesn't work for me no matter how "good" the doctor is. What I've noticed is I do well with confident (but not arrogant) doctors. They view complicated patients as a challenge rather than a threat and are not intimidated by patients educating themselves or asking questions whereas unconfident doctors tend to find this type of patient threatening. Also, confident doctors are more likely to tell me they don't know something whereas an arrogant or "feeling threatened" doctor is more likely to make something up or brush off my concerns than admit not knowing.

[gjensen]

The cardiologist that referred me to Mayo set my appointment for 6 wks after the Mayo appointment. If not for the Mayo trip, I would have been ok with that. I just tend to feel that with him being the referring physician, he would be interested in the outcome. To me it is a red flag, and revealing.

I just wanted to throw it out there that it took a few weeks (I think maybe 4) for the complete write up from Mayo (includes all of the testing, testing interpretations, doctors notes/impressions, treatment plan, recommendations) to get put together and sent out to me and my doctors. An EDS specialist I saw in Chicago who does a thorough write-up said to allow 3-4 weeks for his report. If your doctor knows this, maybe that is why he scheduled it a ways out from your return.

If when I am in a doctor's presence, I do not feel respected and as though my concerns are being taken seriously, it doesn't work for me no matter how "good" the doctor is. What I've noticed is I do well with confident (but not arrogant) doctors. They view complicated patients as a challenge rather than a threat and are not intimidated by patients educating themselves or asking questions whereas unconfident doctors tend to find this type of patient threatening. Also, confident doctors are more likely to tell me they don't know something whereas an arrogant or "feeling threatened" doctor is more likely to make something up or brush off my concerns than admit not knowing.

He does not know that, well . . . I do not think that he does. He commented that he had not referred somewhere there. I do appreciate the objective view. I really do. I have become quick to make judgments of this sort. Like many, I have had trouble finding someone that I feel good about. I keep thinking that I do.