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Extremely Frustrated (Potsie Runaround)


Becia
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So the past month or so has been pretty rough. Came down with bronchitis, found out I was allergic to one of the antibiotics they tried me on, migraine city happening because I couldn't stay hydrated with swallowing issues (and when you feel that bad, you really just don't want to eat), two doctors appointments (new cardiologist and neurologist not so new), "try this new medication, its different than you've taken before", fought with insurance to get medication approved, got put into hospital because two shots of dilaudid/zofran/benedryl wouldn't break the migraine/vomiting streak while I waited for medicine to be approved, get out of hospital, still fighting migraine but kinda keeping food down, get new medicine approved, take all five my insurance will approve for a month within a week, take three injections of imitrex a day apart from each other even though imitrex in the past never worked with me, doctors office never calling me back except to go to ER because I'm back to three days straight of throwing up, ER doesn't treat chronic pain, sends me home, tells me call doctor, I call doctor, he tells me go back to ER after I give meds from first visit a chance to work....*TAKES DEEP BREATH* lay around all day unable to eat/drink, trying to take pain meds and phenergen, just to be roused at 10:40pm by your medical power of attorney telling you "Your father is on his way, you're going back."

At 4am this morning I got back home from the ER, where they tried two injections of stadol/zofran/benadryl this time, told me "You should be feeling relief, you're not dehydrated, but we gave you a liter of fluids anyways, here's a script for Fioricet, go see your normal doctor, your neurologist really needs to get these under control better, out the door you go."

This would be the second trip in a three days I've had to drive an hour away (to the hospital my neuro is at) for care, just to be shown the door with a level 10 migraine after a few hours. And everyone keeps telling me "You've gotta relax and take it easy, it will help this," well, I did my best, but trying to do this with my father in the room, there's a reason I chose to go with friends to the ER. Dad keeps talking to me when I just wanted to put on some Josh Groban and listen to some music to block out the ruckus outside the door while the meds tried to do their job. Nope. We had to keep talking about the price of gasoline these days, how they couldn't have made the road straight from point a to point b, and "will those people out there ever turn those alarms off?" At one point I was in tears with him, and I had to explain over and over "I cannot control this, please stop asking me to talk."

And trying to explain dehydration in a POTSie to a doctor is like introducing a chicken to a mule... it just doesn't work. Yes, my blood chemistry is halfway normal (stuff like electrolytes are on the low side), but my urine chemistry shows that my body is shutting down (I can't remember the name of the hormone/chemical excreted, but when you are dehydrated, it shows up), does this not mean anything? For a person who is supposed to drink minimum 2-1/2 liters of water A DAY, and hasn't been able to get more than 20 ounces in without throwing it back up... how am I not dehydrated to you?

My headache is currently a 8-9. I am dizzy, my heart is all a flutter (and not the good "I'm in love" flutter), I haven't been able to eat in about 2 days, and I'm wearing long sleeves because I have bruises up and down my arm from all the blown veins after last night and Sunday (but noooo, you're not dehydrated.. I used to be a phlebotomists dream poke). With as much zofran I'm on, I admit I am a smidge hungry, but I'm terrified of eating because I cannot do throwing it up. That hurts the throat and swallow effect even more. And I really really REALLY hope that I can get my port/PICC line approved (they are going back and forth on it because of infection rates being scary), because there's no where else to poke. And I can't eat and drink at the same time. I'm 32, and know all the flavors of Ensure.... the chocolate and I are in a relationship ;) But what I really want right now? Pancakes. Hashbrowns. Fajitas. If we could have those at the same meal, and my stomach be okay, that'd be awesome. Oo, and I want a margarita too!

I know POTS is a rollercoaster, but can I please get to that nice little portion of the ride where we're coasting on flat ground? The extremes are not my cup of tea.

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BUN and creatinine are usually elevated in dehydration, so I'm thinking that's what you're thinking of. Also your hematocrit can be higher due to lower plasma volume. At least they gave you some fluids anyway.

So sorry to hear that you aren't feeling any better. I was hoping after you got those new doctors they were going to help you more :(

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Rest and rest Becia. Sorry it's such a rough go. Have you seen Dr. Grubbs yet? Drink as much as you can and stay hydrated. How far do you live from Cleveland Hospital. Maybe their emergency room would call in a POTS specialist. Don't know if this would work but it's just a passing thought. Or the hospital emergency room that Dr. Grubbs is associated with if you have already seen him. Maybe that would be a possibility? You have got to get these doctor's attention somehow to get a handle on all this.

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Becia,

Is the neuro you are seeing a headache specialist? There are neurologists that have a subspeciality in headache or even more specifically, migraine. I know headache.org has a physician's list by state if you would like to find someone in your area.

Hoping this episode passes soon.

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Hes the headache specialist of this practice, I believe (kings Daughters in Ashland Ky). He saw me when I first was in the hospital there, and has become my normal neuro since my other one didn't listen to a word I said when I said "I'm allergic to that." over and over again. And I'm four hours from both Toledo and Cleveland. Haven't been seen by Dr Grubb, still on wait list.

We all are thinking my tachycardia could be a problem with this, because it's been so fast lately. Add to the fact I'm constantly dehydrated, even a liter makes a huge difference in me (I'm upright today, halfway communicative, been to my therapist appointment, and am going to church dinner later with a friend), which is why we keep hoping for fluids on a more consistent basis, so I'm not overloading my stomach with them, and that my cells have a chance to absorb it better. My main cause of nausea outside of the migraines has been the fact I drink so much, I never want actual food, so when I do eat, its like my system goes in reverse.

I am trying to rest. I told them that was what yesterday was for me, a rest day, and they freaked because I hadn't gotten out of bed. Well, had no reason to. I was tired, my stomach wasn't handling food, I was sipping on water, but I know its never enough.

Its a wild ride. Like I said, I want that little slow down part for just a little bit.

I came home from therapy with the full intent of trying to eat a piece of chicken in a tortilla. I haven't even been able to attempt it, I'm scared of the pain from throwing up making my headache worse. Im making more homemade applesauce, but even I get sick from small bites of that. And I'm supposed to go to church dinner later? I think I will be sticking with water.

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Sorry to hear you are dealing with this again. Have the doctors ruled out other causes of headache and nausea besides migraine? I hope you get to feeling better soon.

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So far, no one has really ruled anything out, other than you have migraines and they are flairing up again (I managed to control them for the longest time via diet, and the very rare pain shot in the ER). I think its the florinef for some of it, since I started taking the double dose, they've gotten so bad. For the rest of it, I'm not sure. I always have some sort of headache, but since they seem to waiver into migraine territory, and set off the nausea and vomiting a lot more (I have some of that just from overloading my stomach with fluids it seems, trying to get my 2-1/2 liters in). I feel like I'm just a walking cundundrum... not sure what's doing what, but I know what I'm feeling, and it really isn't cool.

I made myself eat a few bites of dinner tonight (some weird ham casserole that was actually quite good, peas,and cornbread... I am such a southern girl, I love cornbread), and went to a meeting afterwards, and about 15 minutes after eating not a whole lot, I had to excuse myself to go throw up again. It didn't help that I was really hot (the AC wasn't working right), but it hurt. Swallowing wasn't too bad, as I took small bites, and made sure they were "moist" per my occupational therapist who did the swallow study, but coming up, I could feel my throat trying to clamp down after I threw up, so trying to sip some water to get the "flavor" out of the back of my throat was a bit hard. I managed to swallow a zofran, and I use peppermint essential oil in my water sometimes to help cool my stomach, as well as cool off. Been sipping on it, and I'm okay right now, just a little sore.

Is anyone else on a preventive for their migraines? I was tried on Topamax a long time ago and shook like crazy with it (I couldn't even hold a pen right, nor hold on to the steering wheel of my car, I just kinda had to wedge my hands in the grips), and they had me on Neurontin for a bit, but I never really saw much reduction. I've kept the same trigger-free diet (mainly allergens like peanuts, artificial sweeteners, eggs) since this flare-up, tried to eliminate other things that I thought might be causing them (like chocolate), but to no avail. I'm terrified to be adding yet another drug to my system, seeing as a few months ago we had to wean a bunch out of it, and I did pretty decently for a bit...but I was also hydrated via IV when we did it, and it eased so much of the pain.

Am I putting too much faith in having some regular iv hydration to boost my energy and hydration levels? I know how I feel prior to IVs in the hospital or the ER, and how I feel after, and like I've said time and time again, it feels like I've been rejuvenated. I have energy, I have focus, the ability to push past my normal pre-syncope feeling, and even better, I have the ability to work on my swallowing more. The more I have to drink, the more my throat doesn't like to accept solid foods, like I'm still having to retrain it from the "starvation syndrome" I was diagnosed with back in February. And if I drink all my fluids, yeah, I can get some calories in via ensure and the such, but its still a texture thing: my throat is still only accepting fluids, I get so full on them that my stomach doesn't want solid food after I work to get it down, and it all just goes in reverse. And I'm hoping, with some regular hydration run in at a pace my body can really absorb it (instead of 15 minutes tops for the liter, which hits my kidneys like a waterfall), and maybe some of this stuff can self correct? Like, I can get back on some even keel?

I'm really nervous about this, but yet, hopeful. I remember how I felt coming out of the hospital last February, and man, I want that back again. I want that energy, I want good feeling, I want that ability to fold my own laundry, and not pass out. It was nice for a brief moment to have my hands above my head to wash my hair, and not pass out.

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I'm on depakote for migraine profilactic. Topamax made me feel like I was dying a slow death and neurontin didn't do anything for me good or bad. The only side effect I'm having from depakote is significant weight gain. But going on depakote is also how we figured out my gi issues were actually abdominal migraine. Within a week of starting the drug, my gi issues were almost gone. Now, I have mild gi symptoms with my migraines but nothing like before when I was spending nights on the bathroom floor in the fetal position. I use maxalt for the breakthrough migraines.

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Yeah, the neuro in hospital at KDMC (Dr. Kimm, such an amazing, ecentric woman) mentioned depakote, but then saw I was on a double dose of Florinef and said "You're already on that, and I'm sure you probably already hate yourself, so no depakote for you" (her exact words, I just about fell out of bed laughing). and my GP and I talked about abdominal migraine as well. Must research more on that.

Maxalt never worked for me, and I'm allergic to the ODT type of everything. I used it for maxalt one time, and it gave me a worse headache. On this go around, I've tried Imitrex Statdose (the shot, which worked faster, but never got rid of the headache at all... I could tell the meds were in me, but headache the same), Axert, have a script for Fioricet (which Ive taken in the past with halfway decent results), and I've resorted to taking my emergency Tramadol (what I take if I have joint or other injuries from falls and such, I try to avoid it so I can not have extra seizures). I currently rate my headache about a 7, the fluids from last night helped a bit to boost me, and I've been trying to hydrate better, which if i'm hydrated right, it helps, and if i can control the nausea and vomiting and get actual food in me that wont set off that firework display, it helps too. But I also didn't take all my florinef today... I cut down to .1, and just used my 30mg total of midodrine too.

I think I was on Midrin? for breakthroughs last time? Something with an M, that wasn't a triptan I believe. Triptans all seem like they make it worse (and I have been on Maxalt, Imitrex various forms, Relpax, Axert...)

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An increase in the Florinef caused headaches in me as well. It's a common side effect. I can only tolerate .1 mg once a day. Maybe the headache will improve if you continue to keep the dose lower... Beta blockers are also sometimes used to prevent migraines. Not sure whether you tolerate those.

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My cardio doesn't think I can tolerate them, I mentioned that the first time I met him that I need something to control the tachy, and looking back at my history that he had, I'd apparently been in them prior to my ablations with little luck (one made the pvcs worse in two days compared to the other). Which reminds me, I gotta call him tomorrow.... I don't see now having my appointment I'm July will make much difference before he formulates a game plan, and if I do proceed with a mediport for hydration, I want him involved.

Anything that has me passing out less, allows me to think halfway straight, lessens the pains in various body systems, and can get me back on my bike, I'm all for.

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Hi Becia,

I'm sorry to hear that you are having such a tough time. I've had two different migraine specialists over the years going back more than 12 years and I tried every preventative they had. So much medication, one trial after another (is it any wonder I have sensitivities to medications?). The only preventative that helped was cyproheptadine (called periactin in Australia). It was like magic. Within days my migraines disappeared. I could not believe that a H1 antihistamine could do this. This happy state lasted for 3 months and then I was back at the neurologist's telling him it had suddenly stopped working. He told me to have a 'holiday' from this med and retry it again at a later date. I did so and I it's helped for , I think, 3 or 4 different periods of time over the past 8 years or so. But it was not as effective as the first 3 months I used it. And now I get no relief from it. And last time I tried it for a couple of days it made my constipation worse.

I was watching a you tube presentation of a Dr who treats pots in kids and teenagers and he mentioned periactin for migraine prevention. On the box it says it's indicated for migraine in teenagers if I remember correctly. But it worked for me for some time. It also caused me to be very hungry all the time, put on a lot of weight and could be constipating -- a big problem for me. Perhaps you could look into this with your neurologist if you already haven't?

Dreaded migraines. I call them 'the beast.'

blue

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Well, my doctors appointment went fairly well. Looks like in about a month or so, I should have my port... just gotta make it until then. I've already been in the ER twice this week for hydration, and it looks like someone beats me at home with all the bruises. Long sleeves here I come (in 90 degree weather, yech, I'll just stay home). He thought just staying hydrated enough may be enough to help break my migraine streaks lately, along with keeping tabs on my triggers, making sure i'm getting some nutrition (which with the port, should be easier, so I can focus on swallowing real food rather than drinking everything and anything other than a real good margarita right now), and could possibly lessen my tachycardia a bit more too. Just told to keep my other doctors informed of everything, and keeping my faith.

Thanks to everyone for their kind thoughts and recommendations. I'm taking them all to my doctors and going from there. Something has to give at some point.

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I was thinking (can you smell the smoke?).....before all my issues got this bad, a neurologist had put me on verapamil for my migraines. It's a calcium channel blocker, usually used as a bp med. But back then, it did help my migraines. Might be another option to talk to your docs about. I'm on it now to control my heart rate since I had to quit the beta blockers due to mcas. Nothing seems to be helping my headaches at this moment but I truly think that is due to my neck issues and hopefully the surgery sorts that out. The whole migraine thing is so complicated when you have to factor in the POTS, MCAS, EDS, seizures, etc., etc. that so many of us have in some combination.

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