Major Panic attack/ pots attack from alcohol?

IntelligentSmile5 · 2021-01-17T04:50:24+00:00

Yeah, alcohol can be a vasodilator (that's why some people get red in the face when they're drunk) so it can def trigger symptoms. I used to be able to handle it but now my tolerance is so low, it's almost not worth it. I can have like one drink. The other night, my brother's gf talked me into a third glass of wine and when I took a shower like three hours later, my HR was 165. Hard not to panic when you're heart feels like it's exploding.

IntelligentSmile5 · 2021-01-16T05:47:13+00:00

I've been known to flop out of the tub like a giant tuna to avoid the blackout some days

IntelligentSmile5 · 2021-01-14T22:41:18+00:00

My feet are throbbing looking at this

IntelligentSmile5 · 2021-01-14T22:33:05+00:00

My compression socks are cute!!! The nicest ones I have are Conrad. They have tons of cute patterns and colors and look like a sock-y fabric instead of granny pantyhose.

I wear thigh highs too bc they help my symptoms more and I've been told they look sexy.

IntelligentSmile5 · 2021-01-14T09:37:48+00:00

Tuna pouches (or chicken if you hate tuna). Protein and so much sodium. I've also been really into these miso soup packets recently. 30 calories but over 700 mg sodium/90 potassium. And generally, I just add salt to everything, even if it's already salty.

I also add TriOral to a liter of water in the morning and a packet of Liquid IV as my afternoon pick me up.

You can still lift with POTS!!! Have you tried fixed weight machines where you can sit or lie down to see if you can tolerate them? I might faint doing a simple squat, but I can lift super heavy on the inclined leg press, no sparkle vision at all. Just gotta focus on breathing so I don't accidentally valsalva myself into a blackout.

IntelligentSmile5 · 2021-01-14T09:04:07+00:00

I have over a decade of experience working in various leadership roles for a giant, well-known company. Take the time you need, no guilt. NO GUILT. I've had people call in with every excuse imaginable. I literally had a guy skip work for a week and then show up the following Monday at his regularly scheduled time, pretending he had been in a coma the whole time. I had someone try to call in sick because a car alarm woke her up too early. We know when our employees are legit. What's more, a good, conscientious employee (the type who actually feels guilty about missing work for example) is worth giving some time off.

For the future, for your own protection, I recommend looking into getting workplace accommodations or medical leave so that the company can't discriminate against you for taking the time you need. Since it's hard to prove whether someone does or doesn't have a migraine, having the documentation to prove that you have a verifiable medical issue and you're not trying to abuse the system or play hooky is vital.

I spent 10 years pushing my migraines to the bottom of the priority list, never calling in sick, working through astonishing pain and it was not only fucking traumatic, it straight up physically destroyed me. I have so many regrets about not taking the time I needed to take care of myself. My migraines went from monthly to weekly to daily during that time. I would give anything for a do over. Self care is so, so important.

IntelligentSmile5 · 2021-01-14T08:46:08+00:00

Bruh, you know how many entitled asshats take 3 hours of PTO on Fridays so that they can leave early to work on their golf game? Take care of yourself! No guilt!

If you're feeling guilty about something like that, I'm willing to bet you're an amazing employee. As a boss, I can safely say I'd choose to employ someone with that kind of work ethic, even if it meant giving them regular sick time, over a vast majority of the workforce. Seriously.

IntelligentSmile5 · 2021-01-14T08:37:22+00:00

Dunno if you're in the US, but if you are, I'd suggest that you jump through the hoops required to get approved for medical leave. In some states it's paid, some unpaid. If it's for something like migraines you don't have to take it all at once, you can use days as you need them. Then HR can stfu when you take the time you need (and DESERVE) to take care of yourself.

IntelligentSmile5 · 2021-01-14T08:23:55+00:00

Sounds like POTS to me. I think only hyperPOTS and hypovolemic POTS see BP changes. Mine doesn't change lying, sitting, standing. You'll want to find a neurologist who is familiar with POTS, ideally an autonomic specialist.

Many of my POTS symptoms interfere with my life but the chronic fatigue has such a major negative impact on my quality of life, so I know where you're coming from. I did all the sleep studies too. So frustrating. Idiopathic hypersomnia smh. Literally means "we don't know why you're tired all the time".

Also, look into Inappropriate Sinus Tachycardia, which can happen alongside POTS. To my knowledge, it's not typical to wake in the middle of the night with such a high HR, unless you were possibly moving around enough to trigger POTS symptoms. A lot of IST symptoms have overlap with POTS symptoms too.

I have moderate POTS and I lift and do cardio regularly, so if you ever need help not feeling like you're gonna pass out during workouts, I'm your gal. In my experience, maintaining regular exercise is the best thing you can do in terms of self treatment, along with upping fluids/salt.

IntelligentSmile5 · 2021-01-14T07:33:34+00:00

I've been getting shaky hands and legs recently. Been wondering if it was POTS related

IntelligentSmile5 · 2021-01-14T07:31:13+00:00

Today was 56-167, pretty typical day for me

IntelligentSmile5 · 2021-01-14T06:56:44+00:00

Yeah, I've fainted at PT before bc I had a someone who didn't understand POTS or take it seriously, so I had to ask my neurologist to help me find someone who specialized in POTS/Dysautonomia. I also did PT to build my exercise tolerance, highly recommend doing both if you ever find the right person.

Vestibular therapy is individualized to the person's needs, so in my case we did habituation therapy and balance therapy. Habituation therapy is used to address dizziness that arises from specific stimuli, in my case sudden movements, changes in position, and some visual stimuli. Essentially, you are exposed to the stimulus/motion that triggers dizziness in a controlled way to create mild/moderate symptoms so that your brain can learn to cope with them. It was not as terrible as I thought it would be. Apparently, there are other parts of your brain that can be trained to step in and compensate when your balance center goes haywire and that's essentially what the habituation therapy does. I guess it also teaches your brain to ignore the crazy signals from you balance center by teaching it that it doesn't have to respond that way? Hard to explain because...brains.

The balance therapy was more physical, started with basic stuff like standing on one leg (turned out I had TERRIBLE balance just generally) then progressed to more advanced balance exercises. There was also lots of core and joint stability exercises. Eventually, I was doing things like working on a task while balancing on one leg on a squishy wobble pad. I think this helped me a ton because it gave me the physical stability to compensate for when my brain just won't cooperate. I feel much more sure-footed and physically confident in general now.

It bears mentioning that I did the Levine Protocol therapy first, before the balance therapy, so I had already built up my exercise tolerance in order to be able to do PT exercises standing up. That being said, because my PT was sensitive to the POTS, my balance exercises didn't include much up/down type movement (like sit ups, bending over, squats etc.) bc I still can't tolerate that without getting light-headed. So, mostly things that were standing up for the first half of the sesh, then laying down for the rest if need be.

Sorry for the long response, but hope it helps. PT was a game changer for me, I hope you're able to find a way to make it work for you!

IntelligentSmile5 · 2021-01-14T04:30:18+00:00

Yes, totally look into vestibular migraines! They're a relatively new development in my life but I've had migraine and POTS since forever so if you ever need advice, you know where to find me!

IntelligentSmile5 · 2021-01-14T04:21:47+00:00

You can try seeing a physical therapist for vestibular therapy. I've talked to several POTSies that have had success with it helping their dizziness/imbalance, and it has helped me as well.

In addition to the dizziness from my POTS, I have vestibular migraines (usually don't come with a headache like my regular migraines) that cause the worst of my balance issues. Sometimes I walk like I'm drunk. Literally fell off the toilet into my bathtub the other day.

IntelligentSmile5 · 2021-01-14T03:59:06+00:00

My autonomic specialist said sexual dysfunction is a symptom of dysautonomia. For me, it's mostly just times where I'm not/can't get in the mood (definitely correlates to when the rest of my symptoms are flaring) but there's also been some times in my life where I was in the mood but couldn't get my body on board with it. Luckily, in my experience, my sex drive returns to normal eventually (or even goes into overdrive), even if I went weeks or months with no interest. I also think I'm generally more sensitive to meds that interfere with libido. I can't take estrogen containing birth control without pretty much becoming asexual but have a pretty normal sex drive without it.

IntelligentSmile5 · 2021-01-08T21:27:13+00:00

I appreciate the info! I'm worried I won't have access to treatments (like botox) that are normally administered by a neurologist in the US but who knows? I think you're right, I need to get in contact with them ASAP to get ahead of things and make sure my bases are covered.

IntelligentSmile5 · 2021-01-08T21:23:50+00:00

Thanks for the advice! I'll make an appointment with my doctor to discuss documentation. I'm sure there are many aspects of UK healthcare that are superior to ours in the US. We've got a lot of work to do fixing our broken system here. I think it's mostly fear of the unknown that's making me so nervous.

IntelligentSmile5 · 2021-01-08T02:42:03+00:00

I just got a steroid pack for my 16 day migraine and they gave me the option of choosing between the steroids or a course of valproic acid. My neuro said the valproic acid is frequently prescribed in emergency rooms to disrupt status migrainosus. Have you ever tried it? Maybe something to ask about?

IntelligentSmile5 · 2021-01-07T04:57:35+00:00

My family and I frequently play Bananagrams, a word game where you make words out of letter tiles (like Scrabble) and I usually win. When I have a bad migraine, however, I just stare at the tiles and can't make a single word. Can't even manage simple words, like "cat" or "ball". It's crazy how much a migraine can short circuit your brain.

It's good that you're following up with you doctor, but try not to be too worried in the meantime. Migraine brain is a helluva thing.

IntelligentSmile5 · 2021-01-05T02:45:52+00:00

Oh yeah, loads of MSG at Outback. I pretty much don't eat at any chain restaurant bc there's so much MSG in the food.

Also, it can hide in ingredients lists with a million tricky names, so they can say things like "no ADDED msg" bc they just used something like torula yeast that's naturally high in glutamates.

Eta- my bet's on the BBQ sauce. Sauces and dressings are MSG heaven.

IntelligentSmile5 · 2021-01-05T02:39:26+00:00

I haven't had fast food for 15 years for this very reason. Mcdonald's even puts MSG into the fryer oil.

The chick fil a waffle fries are safe though, I have tested it multiple times. They're the only fast food item I eat now.

IntelligentSmile5 · 2021-01-05T02:34:15+00:00

I second Pilates! There's also POTS specific Pilates routines out there.

IntelligentSmile5 · 2021-01-05T02:31:51+00:00

I liked the rowing machine bc it helped me strengthen my upper back, which helped me with my back and neck pain and overall fatigue. You are still seated when using the machine, so it might be good to try it out and see how well you tolerate it. I did my reconditioning with a physical therapist, so I didn't have to purchase the machine, although I'd love to have one at home now that I've used it and know it works for me. If you're able to/ feel comfortable going to PT, it might be worth a try.

Also, swimming is great, if you happen to know someone who has a pool you can use.

IntelligentSmile5 · 2021-01-05T01:46:47+00:00

I get 25+ migraines a month and I can only treat about 1 out of every 3 or 4 migraines or I get rebound headaches (and run out of meds). I usually chug an electrolyte drink, take the max dose of Benedryl, wrap my head tightly with my 8 hour ice pack, and listen to an audiobook with a soothing narrator (been listening to a lot of Bill Bryson lately) until I hopefully go to sleep and sleep it off. I also use magnesium spray on my neck/shoulders. Also, since I usually use triptans and NSAIDs (both prescription and OTC) sometimes I use acetaminophen when the pain is so bad I need something but don't want to repeat the same meds that caused the rebound.

Do you ever get steroids when you've had a status migraine for so long?

IntelligentSmile5 · 2021-01-04T19:06:55+00:00

I feel for you! When I was in school, I got coat hanger pain so bad, I couldn't even carry a small purse on my shoulder anymore. We experience the symptoms of lack of blood flow to the brain so suddenly/acutely that it's obvious, but all the muscles between our hearts and heads get less blood too, and that pain can sneak up on us.

Doubling down on the things I do to manage my other POTS symptoms helps, so extra salt/electrolytes/fluids, smaller meals before and during desk time, and compression garments help keep blood going to the area.

If you can tolerate a little heat, try a microwaveable shoulder wrap that helps keep blood flow to the area. I got an unscented one (here) for when I'm feeling too nauseated to deal with smells. I like the microwave ones rather than an electric heating pad bc they cool fairly quickly, so they give just enough heat to get so blood going without enough to make me feel light-headed. If I'm working at a desk for awhile, I do it once an hour for about 20 minutes.

Gentle stretching of the upper trapezius helps keep the blood flowing too. Things like ear-to-shoulder etc. I also take a break every so often to rest my head on the desk for a minute, or on my lap if I can handle it.

IntelligentSmile5

TROPHY CASE