ER visit last night

[Guest Mary from OH]

Well, I spent last night in ER. I look like I may be headed back today. On Tuesday I saw both my PCP and my neuro. My PCP dx me with a horrendous sinus infection. The rapid strep came back negative (but, I'm still not convinced I don't have strep). They're growing the longer culture, I'll find out tomorrow. She put me on Biaxin, which I've been on before, but it's been a few years. This is my third antibiotic within less than a month. The same day I (finally) saw my neuro. He decided I've been having too many migraines (no fooling!!) and that I've been needing to take too much medication (which he has prescribed) and that I'm probably in a rebound cycle. I was only taking them every other day if needed. Never 2 days in a row. So, he decided to take me off all my rescue meds (triptans and narcotics) and put me on oxycontin. This scared the pants off of me. He explained that it would be for a short time to get me out of the pain cycle I was in. I kept trying to explain that it was because of all the drastic, rapid weather changes for the last 6 months or so. I started both the meds the same day. I started itching like CRAZY!!!! I got a migraine from #$%^& (I've already had one for 2 days because of the weather fronts). By evening when I took my 2nd dose of antibiotics, I started vomitting. I had begged my husband to take me to ER when he got home from work. I THOUGHT he was feeding my daughter and then taking me. I was wrong. So then, I had to wait until he put her to bed. Then, he finally called a neighbor for me and she took me. I couldn't stop throwing up. I couldn't even keep water down. It took them SO long to see me. After about 2 hours of waiting, a dr FINALLY saw me. He gave me 4 meds per IV. IT WORKED!! THANK GOD!!! My migraine stayed away until I woke up this AM. I called my neuro's office. He is in the other office today. The recpt finally called me back and said to go to ER. I told her I was already there!! She said she would "try" to get ahold of him, but that he was seeing patients in his other office. I could just scream!!!

I hope my ramblings make some kind of sense!!

Marissa was only at school about 25 minutes and I get a call from the school saying that her belly hurt!! Great!! She's already had 3 intestinal ileus this month (whoops, February!!)!! I do need a vacation!! She's been ok since.

Today is our BUSY day!! She has her Tiny Travelers class after Kindergarten. Then I have to go teach. Then she has tap class and then Ballet class!! ARRGGHH!!!

I wonder if I should carry my "puke bucket" around with me today?!!

Thanks for listening to me vent!!

You should have heard me trying to explain to the ER dr last night about POTS!! It was actually amusing!! I don't know WHAT the heck he was talking about, but he started to talk about some kind of "spots" on your back from TB??? Obviously, he had NO CLUE!!!!

[geneva]

Mary, you poor thing...what an awful cycle you are in right now. I know what those nasty sinus infection are like and I can't imagine taking 3 rounds of antibiotics since they make all my POTS symptoms MUCH worse. I really can't imagine taking the 2 drugs you were given at the same time. I send out my heartfelt support for you trying to kick this infection.

It sounds like from what you said -- or maybe didn't say -- that your hubby wasn't in a particularly supportive mood last night (I am sure he is most of the time but perhaps it was too much for him last night). I think that most of us would rather eat worms than go to the ER where we will be treated like aliens (LOL) so if we say take me to the ER, it should be an indication how very sick we are. I know with your condition and your daughters, you have more trips to the ER than most but I am sorry you didn't have all the support you needed last night. And then to have to educate the doctor on top of that! btw, I no longer ever say I have POTS, just dysautonomia. Most have at least heard of the ANS! Thank goodness the IV meds worked for you. Is the doctor going to take you off the new meds or do you just continue and tough it out? good luck either way.

Yes, Mary you DO need a vacation so get rid of the migraines and sinus infection and plan a getaway, even if you are only able to daydream about it!

Hope you and Marissa BOTH have a better day today.

[calypso]

Oh my, Mary, that sounds like an awful night. Hope you start feeling better soon. I think it's fair for you to cancel all commitments and stay home and rest.

Amy

[Jenn202]

Hi Mary - I'm sorry you have had to go through so much so far this year. My husbamd suffers from severe migrain so I know how incredibly debilitating they are.

I am on long term abx for my Lyme disease, and it causes my hypovolemia to be pretty bad which is probably why you got so ill this time... Biaxin is hard on the system....

I hope you feel better, and can get your migrains under control again.

[Guest Mary from OH]

Geneva-

I was in too much pain to even try to educate the idiot dr. I tried ALL the acronyms - dysautonomia, autonomic nervous system disorder.... etc. I finally just looked at him and said, "give me LOTS of fluids!" My cyber vacation of choice right now is Hawaii!!! I REALLY want to go there!!! I guess a girl can dream!!

Amy,

If only I were that intelligent and not so pigheaded. I just keep going until I drop. Literally... Although I did cancel my teaching yesterday because the pain was so bad, I thought I'd die! But, today, it's a little better. And most of my commitments are for my daughter, so I'm sure I'll just keep pushing myself. I'm sure I'll regret it by tonight!! Why do I (we) do these things??!!

Thanks guys!!

You're all I've got, other than my mommy!!!

My friends, just don't "get it"!!

[Guest Julia59]

I just wanted to chime in and tell you that i'm thinkng about you Mary. I don't get migraines, so I can only imagine what it must be like for you. I know how bad I feel with the headaches I get from my chiari/cervical/cranial instability----at the base of the skull. It has never gotten to the point of making me sick to my stomach, but I remember days I had to walk on my tippy toes.

I wish they could find what causes these horrible migraines that so many people get so better treatment can become available. Your a better woman than I, as I don't think I would handle it as well as you do.

I hope everything gets better for you soon.

Julie :0)

[purplefocus]

Mary,

I'm so sorry you had to deal with the incompetent people at the ER. I'm praying for you to get out of this cycle you seem to be in. I know life is just too hard at times, but some how we do have to find strength to push on. I have the wake to attend tonite and then the funeral tomorrow. It has been tough, but so far my symptoms have stayed intact. I hope you daughter is well. I guess as women, no matter what we are going thru, we feel like we have to keep going. Maybe something that is in our genes when we are born . Peace to you Mary,

Purplefocus

[Guest tearose]

Well, another trip to the ER! Mary! What are we gonna do with you? Don't they know you yet? I am waiting to hear that one day they treat you with respect...don't they keep records to review when you get there? You would probably faint in amazement if the ER doctor knew something about POTS!

So, how is the head now? I suppose they will have to address this more since you are not responding to the usual treatments. You certainly can not function with migraines.

I hope they can help you soon!

And what was the ordeal with the spots and TB? Did you get a student doctor?

Please don't leave home with your bucket just wait till you can manage without the bucket.

feel better soon, tearose

[Gena]

Mary,

You've definitely been through the ringer. It sounds like you need to take the day off in spite of your obligations and just rest, rest, rest.

One concern that I had when reading your post, is that with all of the antibiotics you've been on, it's very importatant to take some probiotics (acidophilus) to ensure you keep your intestinal flora in balance. (You can get it at a healthfood store. Maybe even Wal-Mart) Otherwise all of the good litte bacteria in your intestines get wiped out by the antibiotics and this will lead to diarrhea, vomiting, etc. resulting in more dehydration issues and possible yeast infections, etc.

It sounds like your gut is already a little out of whack, so you may try doubling up on the dosage of acidophilus for a few days until everything settles down again.

I sure hope they find something to relieve your migraine pain fast. Please take it easy and don't burden yourself with too much.

I'll keep you in my prayers.

Gena

[morgan617]

my gastro doc always gives me a med called q-flora when I'm on antibiotics as it helps keep your gut flora stable. No side effects at all. Also, I wasn't on for awhile, but was wondering if you have tried topamax for your migraines. My son has the most horrendous ones and they started him on it about 8 months ago and he's had one headache and a couple tylenol took care of it. He does the whole light, puke, heads gonna pop thing with his. He takes a very low dose. He started at 25 mgs and is on 50 now. You would have to pry it from his cold dead fingers to get it away from him now, it has made such a huge difference in his life. He had very few side effects, (a little tingling in the extremeties and a little weight loss, which have both resolved) . You may have tried it it,I don't know, but just wanted to suggest it in case not. Hope you start feeling better very soon! morgan

[Guest Mary from OH]

Morgan,

I take 200mg of Topamax a day as my preventative. My problem right now is getting an abortive that works when I get one!! The weather here in OH has been so variable and it absolutely KILLS me!! The barometric pressure changes is the worst trigger for me!!

If only I could live in a little plastic bubble!!

[danelle]

Mary, I am sorry to hear of your ER visit, Gosh I hate those. You have to explain POTS to them every time you have to go in and then they still don't get it because they don't listen!!!

It is odd that you said something about TB spots on the spine because someone who found out I had POTS apparantly decided to "investigate" it herself and she told my sister that that is what she found-that I had TB of the spine??!! Go figure, now that you have said that too, I think I am going to "research" it myself to see how they came up with such an absurd thing. Maybe they were spelling it wrong or something.

I sure hope that you and Marissa get over your humps and have better days in the near future. I know you will.

God Bless,

Danelle

[dream02]

Hi Mary,

Sorry it's been so rough on you. I too have migranes and can totally sympathise with you. When it gets so bad you have to go to the Er it's like "Hey! Give me fluids, drugs, and when I start to feel more human we'll talk." Doesn't work of course but dang..... I hope the weather settles out for you, that's one of my triggers as well.

You're in my thoughts,

Denise

[danelle]

Mary, I just found it. Pott's disease is TB that affects the spine. Good grief Can't people spell-well I shouldn't have said that because we POTS folks can't spell too well especially during our worst time Anyway, just thought I'd let you know where that came from because I needed to know for myself too. Now I can tell my sister to tell her mom she spelled it wrong when she looked it up(in case you are wondering, we have the same dad not mom) but I love her just like my full brother and sister and other half brother. My dad got around

Danelle

[morgan617]

Yeah Mary, I'm sure you can't use imitrex or anything. I am so sorry. I really am not sure what Jake's triggers are. We have had really mild dry weather this winter, so maybe that's part of it. It will be interesting to see what happens if it changes drastically. But then he CAN use imitrex. Have you been tested for trigeminal nueralgia? I think that's what it's called? Some people use tens units for that. I know the pain is intractable with it. My headaches are all muscular but I swear sometimes they have to be as painful as a migraine. Sorry i couldn't be more help. morgan

[blackwolf]

Dear Mary, I'm SO sorry you have to go thru all of this junk. I avoid the ER like a plague, the docs there are so behind the times.

How are you both doing now?

I wish I could help you with the migrains ( or as my aunt said mipains). Years ago I used to take a drug called midrin. I don't know if it still on the market or not, but it was good to me. It did come with tylenol in it or with out. I did read in an article a while back about Topamax causing worse headaches for about 3-5% of those who took it.

Hope you feel better soon.

Blackwolf

[goldicedance]

Yeah Mary, I'm sure you can't use imitrex or anything.  I am so sorry.  I really am not sure what Jake's triggers are.  We have had really mild dry weather this winter, so maybe that's part of it.  It will be interesting to see what happens if it changes drastically.  But then he CAN use imitrex.  Have you been tested for trigeminal nueralgia?  I think that's what it's called?  Some people use tens units for that.  I know the pain is intractable with it.  My headaches are all muscular but I swear sometimes they have to be as painful as a migraine.  Sorry i couldn't be more help.      morgan

<{POST_SNAPBACK}>

Mary, From one migraine sufferer to another, I sure hope your's has abated. Several years ago, mine were so severe that I was hospitalized for several days to try to get the migraine out. I have been very fortunate since I have been under the care of a headache specialist. I take massive doses of neurontin (3600) and zoloft (250) as my preventative medications. Then my doc gave me a plan--first maxalt, then double maxalt, then dhe nasal spray, then dhe injectable--spread out over say 48 hours, percocet. If all that doesn't break the cycle, then DHE intraveinously. Dr. Low said neurontin has to be taken in giant doses as a way to help prevent migraines.

Hope you are feeling better.

Lois

[Guest Mary from OH]

Lois,

Thanks, I am doing a little better now. I thought I was "dying" for about a week!! I tried the massive doses of Neurontin before. They made me too tired!! LOL!! Now, my preventative is Topamax. I really had to go up on that one SLOWLY!! It threw me for a loop too!! But, it definitely helps!! My neuro is doing a blood level check to see how much I am actually getting.

Right now, he has taken me off my triptans and narcotics. So, he put me on Oxycontin!! Lovely!! I'm going to a NEW neuro tomorrow!! Wish me luck!!!!

We have a new front coming in and I can already feel it!! I should be in *great* shape for my appt tomorrow!!

Thanks for your kind thoughts! I'll keep you updated!

[MightyMouse]

LEt me know how that topomax works for you. Hey, a nice side effect is weight loss (well, would be nice for me ). I'm on oxycontin too. Currently, I'm only on 10mg, but I'm allowed to take as many as 4 of them (40mg is my docs standard dose).

Neurontin only made me tired when I went over a total of 900 mg per day (300 x 3 time a day). They bumped me up to 600 x 3 and I was a zombie.

Nina

[Guest Mary from OH]

Nina-

I've been on Topamax for 2 years. It works wonders!! Sorry. I didn't have the weight loss effect!! I was bummed!!

I'm taking 20mg Oxy 2x/day. Or at least I'm supposed to be! I'm just taking it when I think my head will blow. I may take one tonight as my head is starting to pressurize because of our rapid changes in weather.

The Topamax helps my migraines both in intensity and frequency. Although, just like any other med, it doesn't seem to touch the weather ones!! I highly recommend it, despite the side effects. Just GO slowly!!!

hope you're feeling better!!

[avais1]

Mary, so sorry to hear of your horrible ordeal! I am glad you are feeling a little better now. I, too, avoid the ER like the plague. The last time I was in one, I was sure they were going to kill me. I had a bout of what I thought was a severe IBS attack, and all I wanted was an anti-nausea drug. Instead, they pumped me full of Morphine!! You know what the side effect of Morphine is? NAUSEA! I told my fiance to get me out of there before they killed me.

My heart goes out to you - I have had 5 in my lifetime, and how you all hang on is beyond me, I'd never have the strength!

A question for you: Have any of you tried placing an ice cube on the carotid artery while you are having a migraine? A nurse friend of mine insists that it works, because it causes the blood vessels to constrict. Just curious if you have tried it?

[TexasGrrl]

Mary, I'm so sorry to hear about your ordeal! I've never had a migraine bad enough to land me in the hospital - thank goodness. I can't imagine what that'd be like.

Avais1 - I haven't tried the ice cube on the carotid. Interesting theory. Is it the cooling of the blood that flows through there that causes the blood vessels in the brain to constrict, or some other mechanism?

Fortunately, I haven't had a migraine since the first night I started the Elavil. It might just be coincidence, but I'm not looking a gift horse in the mouth. I started the full dose (25 mg) last Tuesday, and it seems to be making me pretty groggy for the better half of the day, but I'm going to give it some more time before asking the doc if I can go back down to the half dose I started on.

Gotta say one thing about the Elavil, though.. don't know if this is a long-term effect or just an effect from starting the meds, but it sure is nice to go straight to sleep at night instead of lying there in the dark with my mind reeling like usual. It's like being able to take a sleeping pill EVERY night AND prevent migraines! 15 minutes after I pop the Elavil, I'm off to sleep like normal people.

Too bad I still cant wake up like normal people, though. Before the Elavil, I always described waking up as being something like clawing my way up out of a swamp. Now it's like clawing my way up out of a swamp with concrete blocks tied to my ankles. Ugh.

[Guest Mary from OH]

TexasGirl-

Yes, Elavil can help many people with sleep and chronic pain too! I am pleased it is working for you!! I hope it continues!!

Avais1-

I do use ice on my carotid artery and anywhere else I can manage to hold or position it on my head. It "helps" but usually does not manage to abate the migraine. When my ice packs warm up. I call my hubby on the cell (who is usually sleeping on the couch downstairs) and beg for more ice!! Sometimes I get it, sometimes I don't! LOL! But at least it's another piece for my aresenal!! I also use an eye gel pack which I refridgerate to basically ice that I velcro VERY tightly to my head. I also use Bath and Body's Headache Relief products!! I LOVE their massage cream!!!! Again, no miracle, but every little bit of relief helps!!!

Thanks again!

Going to the new neuro today!! Wish me luck!!

[Merrill]

Hey, Mary, how'd your appointment go? I've been following your story and hoping you're doing a little better. No, a LOT better!

Best,

m

[Guest Mary from OH]

Merrill- (and everyone)

GREAT NEWS!!!! I found an angel of a neurologist!!! Not only is he going to be WONDERFUL for my migraines, he actually is extremely knowlegable able POTS and is willing to treat it!!!!! I almost fell over!!! I was so glad I was sitting down!! LOL!! (sorry about my sp today!)

He considers POTS more of a neurological disease, not a cardiac one. He doesn't understand why it has ended up being treated more by cardiololists since it deals with your autonomic nervous system and any good neurologist should be very knowledgable about any of the ANS disorders and how to treat!! It was music to my ears!! What a bonus!!

In terms of my migraines, he believes that what I'm experiencing is called transformed migraine. Which means that my migraines have gone from being acute to chronic (daily). So, this is a different "type" and treated in a slightly different way. He's starting off with an EEG. He can't believe that I've had migraines for 25+ years and no one's ever done an EEG. Tons of CT's, but no EEG. He also wants to do occipital nerve blocks and Botox. We need to wait for insurance approval for the Botox as it is very expensive. He also is going to give me MUCH stronger meds for my recue meds. He will add an additional med to my preventative besides the Topamax. Interestingly, he decreased my dosage by 50mg.

Also, his first goal is to get me down to 15 migraines a month. I almost cried when I heard that. But then I realized we had to start somewhere. I guess I never really thought about the # of headaches I get. Just the "big" ones. The little ones, I can take. But, as he explained, and I know, the mechanism is the same. He wants to break it and eventually get me migraine free as possible. I think I may be in love with this man!! He even promised me he'd return phone calls!!! And told me to call him with any major problems!!

Whew. I feel a BIG weight off my shoulders!! Although he did say he felt we're in for a long haul and I probably will never be free of my migraines. But, there's NO reason for me to be living like this!! So, I have hope!!