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Musings and Sometimes Funny Stories

This here’s just a blatant travel brochure for Washington. Kevin and I kayaked for 10.14 miles yesterday in Possession Sound out of Ebey’s Landing in Marysville. Sort of the surf to last week’s turf. One meclizine at the beginning and I had a 95% day!

This is the look back across the water towards Mt. Pilchuck and the northern Cascades.

Me, inside the hold of a sunken barge used as a break water.

This little sea pupper climbed on the back of my boat and got seal snot on the rudder mount. So stupid cute.

My NW Action Figure paddling in a slough.

The reason my sister calls me ‘schmoopy’.

Have a good day everybody! :two_hearts:


You two are awesome! Love how your kayaks are kissing :kiss: We are in your hubs old stomping grounds, well south of there at Lake Tanneycomo in Branson. Sway of the travel trailer behind us in the SUV for 6 hours was no cake walk but not too shabby either! Campsite overlooking the lake and fishing this afternoon. Wish y’all were here so your NW action figure and my SEMO redneck could hang out while we hold each other steady walking on the floating fishing dock :joy: Happy Sunday!

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That would be awesome! Your weekend sounds great!

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I can’t think straight, so I came here. This is the only place I can think of that I can talk about whatever’s going on with me without having to verbalize.

I’m guessing I’ve found the end of the serotonin free fall that is giving up Effexor, or maybe close to it. Sunday of last weekend was one of those migraines that wakes you in the wee hours and makes you choose which way to face the toilet first. Fortunately, the bathroom is small and the various bits of porcelain with drains are close together. Lots of MAV dizziness thru the week and then comes Thursday. Blew a red light with cars in the intersection and failed to react at all, except that cognitive thing where you look back and go - FUCK! and then wonder where the emotional response to that cognitive realization went. That day was a huge mess. Rescue meds of one type or another every day since (but most the dizzy, nausea ones rather than pain).

I like my homeopathic doctor, but I’m doubting what is basically a ‘trust me’ treatment protocol. So, I have some decisions to make. But maybe after the compazine settles down this woozy nausea. :frowning:

Sorry to hear this Em. Couple of options

#1 Go higher on the Prop which you already on

#2 Try adding Verapamil as this was something we always spoke off. Also had a very tolerable side effect profile.

#3 Wait out the bad patch and baseline shows up one day and ta da…nothing needs to be done…every bad patch seems like it is never ending untill one day it does ! I had a similar bad patch quite recently.

Thanks Vigs. Barring patience as an option, I need to go see my neurologist. I don’t think my regular GP has enough experience with MAV or the willingness to even begin to prescribe the right meds in the right doses. My homeopath has another appointment with me in three weeks. I’ll talk to him about it, but I suspect he’ll tend toward simple solutions like ginger. I’m already living on that. I don’t want to mess up his course of treatment (provided you consider cortisol support and bomb making materials a treatment plan), but I may have to see So Hee anyway. I also keep gaining weight. How’s that possible? He did do the more nuanced thyroid tests and that’s fine.

I’m working to find a way to take a month off soon. I think that’s probably the best thing I could do.

That could work too. So Hee is a neurologist if i am not mistaken. You can show her the Dr.Hain flowchart and discuss options.

All of the anti-depressant MAV category meds have weight gain a side effect except Wellbutrin.

Wellbutrin does sometimes, too, though less often. I’m wondering if I’m honest about it whether I can even get back on an antidepressant, what with the whole suicidal thoughts problem.

So Hee Kim is my neurologist. It’s been a year already, so I should go see her anyway. She is wonderfully young and teachable. :slightly_smiling_face:

Zonsamide is another choice which has weight loss as a desired side effect. It is same family as neuro toxin Topomax :stuck_out_tongue:


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Got bored in a meeting.

Well, apparently this upset a friend. This is what I see during a brain stem aura. The static I always see. The refractions, halos and double images are frequent but not constant. The hallucination birds are common. The rotating barrel is rare.


So, I just told Diana @Diana21 she could vent. I’m gonna vent, too, but I’ll do it here in my personal space so the world doesn’t have to read it if they don’t want to. Hers was actually MAV related and is an important topic dealing with the emotional toll of MAV. ( Mine probably isn’t even MAV related, but who’s to tell. (Thanks again James @turnitaround for giving us valuable space to talk about our personal experiences.)

Some days being me is frustrating. Today is just such a day. I’ve been nauseous a lot lately. Bloated. The typical joys of IBS. Today took it to a new level.

I’m talking on the phone after lunch. Having an unusually enjoyable conversation with a sales representative who really finds purpose and pleasure in his job at Godaddy. (You go Flynn!) During the end of the conversation I start feeling so very not right. He can’t tell because unless you happen to be looking right at me, I can sound normal during nearly anything, provided I don’t have to keep it up long. I did manage to hang up the phone.

Without much warning other than a creeping brain fog, sudden motion sensitivity, photosensitivity and blurred vision, my whole system decides to violently purge. The bathroom is mercifully right next to my office. And the fixtures are close together. And then pain - big time, gasp, cry, panic pain in the lower right quadrant of my pelvis. The sort of pain that doubles you over and suggests maybe a call to 911. (I didn’t call 911.) I sort of limp and hunchback my way to the bedroom with an ice pack (small house footprints are a really good idea). An hour of squirming and gasping and looking up things like appendicitis and strangulation of the intestines later, I realize I’m late to PT. I have to go to PT because my shoulder and neck have been on fire in a crazy searing pain for weeks. Just sitting at my desk makes my eyes water by the end of the day.

My PT is a lovely woman who basically said she’d work the shoulder and suggested maybe my dumbass should have gone to urgent care instead. (Didn’t do that either.) She won’t touch my pelvis until it calms down. Holy piss did that shoulder work hurt today. I have a huge pain tolerance, but man oh man that hurt. She used the phrase “oh honey” about a half dozen times as she ground her elbow into a bunch of very knotted and inflamed tissue and held it there. (Way more polite than that hissed profanity sound I was making.) She lets me hide under the covers with the lights off when the PNW cloudy, curtained outside light feels like a spotlight. She’s not the judgmental type.

Anyway, not regular IBS. Not really the abdominal migraines I occasionally do for variety. My best guess is I tore some pelvic scar tissue during a MAV inspired purge. I’m gut punched now, but not in searing, stabbing pain (except the shoulder) and no fever. Moving on.

While this may seem an under reaction, I should note it’s common enough for me to have some medical disaster or another that when my 17-year old came downstairs to find me prone on my bed icing and squirming and I asked him to please walk my dog, his response was to say “But I’ll have to put pants on and I just paused my game to get a snack.” If you ever feel like a big deal, just ask a teenager. They are fantastic at keeping you humble. This is the same kid that saw an opportunity to lose his virginity while I was at the ER getting an IV migraine cocktail. (Classy.)

I got back from PT and enjoyed some more purging, but not so violently as before. So yeah, if I spike a fever or the pain ramps back up to intolerable levels, I’ll go to the ER. Otherwise, I’d just as soon save myself the time and expense of yet another MRI, colonoscopy, and/or endoscopy to find nothing in particular wrong with me. These waste bucket diseases are a drag.

Ah, thank you. Venting session complete. I’m going to finish that staff report I was working on and take shade from my husband for not going to the gym tonight. I went Sunday and yesterday, but missed Monday on account of the shoulder pain. He’s a go anyway sort of guy. He says things like ‘you do what you need to do’ but then later will point out I haven’t been doing healthy workouts lately. Then again, he’s been meaning to make a PT appointment himself because his version of healing is hitting it harder.

Oops, that last little bit was some more bitchy venting. Sorry.

Ok, now that’s out of my system. Again, thanks for letting me vent. It really helps.


Emily, I don’t know if to laugh or to cry with the above statement, my teenager is a 13 year old girl and the craziness has started and I know it’s only getting worse, they can be such pain in the butts sometimes lol today I asked her why she didn’t pick up the piece of bounty on the floor instead of walking over and she said because she didn’t put it there :woman_facepalming:t3::woman_facepalming:t3::woman_facepalming:t3:

Anywho …I’m sorry you had a bad day, with my endometriosis and my pcos I completely understand the feeling of not knowing if to go to the ER or to just stay home and see if it gets better (in my case cause I don’t want my medical debt to keep growing). It really sucks, specially because it only means that if you are willing to wait it out is because these crazy painful episodes are almost a norm in your life (compared to a healthy person who most likely would run to the ER for things even less serious or painful).

I hope your pain gets better but don’t wait it out for too long either, better to be safe than sorry :heart:

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It was PCOS that led to endometriosis that led to the hysterectomy that caused the scar tissue. (The Biblical begats of Emily’s lower half misery.) My husband wants me to go back under the knife to cut all my organs apart. I seem to recall it’s surgery that caused the scar tissue in the first place. Not too keen on going back to square one.

Kids get this way because if they stayed like they were at 9 years old, you’d never let them move out. By the time they hit 16 you’re starting to get panic attacks they won’t launch and ever leave your home.

I was already sleeping and crazy thunderstorm woke me up, good luck trying to fall asleep again so decided to come back here and ask how’s the pain?

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It’s actually a lot better, thanks. Had ice in two places. That helped.

Where do you live in Tampa? I went to Eckerd College in St. Pete.

I’m in westchase, about 45 min from st Pete

I’m glad the pain is getting better, keeping fingers crossed that it stays like that

I think it was a scar tissue tear. I’ve done it before, just not in that area and in such flagrant fashion.

I’m near Seattle now. My parents and in laws all live in Florida, as does Anna @Manatee. I miss the manatees and dolphins. There was a girl in my dorm that played the bagpipes. We ostracized her to practicing outdoors. She would go to the seawall and gather up crowds of manatee and dolphin as her offshore audience. At 46 that seems a long time ago now, whole lives have been lived since then.

Lol at the manatee audience :joy:

We’ve been here only for 2 years and 3 months, we moved from PA, the main reason being wanting to have more to do and explore and to not have to deal with the cold and snow, little did we know that we wouldn’t be able to do much anyway because after we moved is when my health went downhill …I’ve always dealt with the pcos part but always had it under control then it all hit me and discovered that not only did I have pcos but severe endometriosis adhered to my ovaries, my uterus, my bowels and hip joints, lost an ovary because of that, was put on mirena to keep the endo under control and that’s when migraine pain got worse and then the chronic dizziness and here I am, going to the beaches only to sit on the sand because the movement of the water is now a mav trigger too :woman_facepalming:t3:

It’ll get better. Sometimes it takes a year. Be as patient as you can. But don’t let MAV put walls around your life. Have fun anyway. MAV can’t kill you. Sometimes the choice of a few days unpleasantness is worth it for the fun or freedom gained.

Hysterectomy cured the endometriosis for me. I kept both ovaries though they’re failing. Scar tissue is cruel. Mine is pretty much diaphragm to pubic bones. I’ve had about 100 PT sessions in the last 2.5 years.

I’m certain there is a link between MAV and PCOS and I expect both are at least partially metabolic disorders.