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Very symptomatic - I think Lupron did it


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Hello all,

The good: I just got home from a one week vacation, which was wonderful, even if my body was freaking out on me. I really loved being able to get away, and I know that many people here are unable to fly, so I feel blessed in that regard. I got to hang out by the pool all day and I read 2 and a half books for FUN. I haven't read for fun since starting graduate school more than 6 years ago!!!

The bad: I've had nonstop runs of tachy, paired with hot flashes for 5 or six days now. The hot flashes started on the first day of my vacation. Since they started, I've been in full blown POTS/NCS. I recall Dr. Grubb telling me that menopause would be tough--he wasn't kidding! I need to call my gyno and tell him that there will be no more Lupron injections. I've traded one set of symptoms for another, and I tolerate pain better than having my heart rate flying above 200 bpm while I'm sitting doing nothing.

I almost didn't make it home from Mexico because I was > this close < to passing out the entire time in the airport. I kept telling Teri "I need to lie down...I really need to lie down." Salt and fluids didn't help. Their idea of airconditioning at the Cancun airport is my idea of sauna. We were delayed so we ended up there from noon until 5pm.

I know Teri was worrying, having taken away everything I had to carry, and fanning me off. It has been a very long time since I'd felt this level of POTS/NCS symptoms--maybe not since before I had meds? The spinning and the nausea to go with the sweats and the feeling that my body weighs a few hundred pounds (kilos) more than I really do. oy. For those of you with poorly controlled symptoms...I'm amazed that you are able to participate here. I was barely coherent.

I was so thankful for my medical bracelet, because despite looking normal (maybe not so normal, I was sweating profusely), it was what allowed me to easily cross the langauge barrier and get early boarding on the flight home--and sit while they filled the plane. It was lovely with my ac vent open full blast. AHHhhhhhh. Once we were about halfway home, Teri told me "I was really worried about you in the airport." Yeah, well so was I. I kept thinking how awful it would be to have to call for an ambulance in a foreign country (Ernie... I had visions of you at MCO).

Now that I'm home, I'm trying to decide what to do next. I've already decided that I will not take any more Lupron. However, I figure it will be a few weeks before my body stops freaking out, and I start summer grad school in 3 days! I'm thinking of going back on an EP cardio a saw a few years ago. I know he is good friends with my current gp, and I'm wondering if I can convince him to brush up on his ANS info as I can't imagine I could get to see Grubb anytime soon. I need someone to patch me up enough to get through 4 days a week of classes...and I really think my gp is just not up to this one. Ideas anyone???

Nina

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What sx were you having that you took the Lupron for? It would depend on that. I got through my last month of nursing school on prednisone due to inflammation from endometriosis. After school I had a hysterectomy and then went a couple years of getting hormones leveled out. PM me if you need.

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Hi Nina,

You made me smile and laugh when you told me that you had vision of me during your wait at the airport. I am glad that you managed to pull through without passig out. I can relate to what emotions you had during the bad period.

I am glad that you had a great time during your vacation.

Nice to see you back.

Ernie

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Nina

good to see you back!!

I'm glad that you were able to go on vacation!!

However I am sorry that you pots/NCs is flarring up so badly.

i was thinking, you may not be able to get into see dr,Grubb anytime real soon, but maybe a cancellation apt. will pop up.

Anyways, I wanted to mention, could you GP call and speak with Dr. Grubb? get some ideas of what maybe to do next?

I know my cardio doc calls dr. Grubb and speaks to him,,

just a thought...

i really hope that you start feeling better soon, and kudos to you on going to grad school, thats got to challenging to say the least, How do you do it??

I really admire you for that!!:(

good luck and feel better soon!

Linda

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Nina

Glad you got to get away and managed even with those awful symptoms. I had very similar symptoms much of week before last. The flare up for me has passed for the most part, but I am sure it was hormone-related too.

It's good to know your medical bracelet worked in that situation.

Katherine

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thanks all... I was on the lupron for lower abdominal pain as a trial to see if it helped. My Gyn thinks its gastro pain & my gastro thinks it's gyn related. AGH!! :) Anyway, the lupron didn't seem to change the pain level too much, but a little.

Now I have a wicked migraine that started in the middle of the night. I see an ER trip in my future. :( oh well. I'm thinking the lupron is leaving my system and set this off. I was due for my injection on the 1st of July.

Off to go ice my head again. Seems to help more than the drugs I took in the wee hours of the am, and with my breakfast.

Also, thanks for the welcome back. I'm reminded out large our group has gotten as I've not yet been able to get through all the posts. To those who joined while I was away and I missed greeting personally, welcome. :) Nina, limping but still here.

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Nina, I think you are wise to skip the Lupron dose. As far as I have been able to determine the only people who benefit from it (except the manufacturer!) are men who have prostate cancer. For some reason a lot of insurance companies require women to have a 1-yeat trial of it before a hyst. When I worked for an insurance company we started figuring and decided that if the patient wanted the hyst and met criteria to not require that. I don't know what it is now but back then we were paying as high as $1,800 for each injection!

It probably is the lupron leaving your system that is triggering your migraine. Night night - hope you manage to sleep through most of it!

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Guest Julia59

Nina,

I live near MCO---now known as The Medical University of Ohio- :)

Believe me----I felt like I was from a foreign country when I went there---and I lived right down the street. I went three times in the beginning of my POTS due to heart realted issues. If I ever have to go again---I will demand they call Dr. Grubb.

Do you know that Dr. Grubb got a new nurse practioner working for him? She is so nice, and she took so much time with me on the phone. We had talked about my fiasco with the neurologist---she was so supportive. My appointment with Dr. Grubb isn't until October, but 'm going to call Tuesday since I had that heart spell last night---when I thought my heart was coming to a halt----dropping to my belly----ick, I just don't know how else to describe it.

I'll just ask to see Debbie, the nurse practioner. She told me to call anytime I had problems. Sometimes Dr. Grubb will see patients who come to see the nurse practioner if things are pretty serious.

Maybe just give their office a call and possibly get some insight on what to do and if they think it could be a side affect of the Lupron. They know how sensitive people are to drugs who have NCS/POTS, and I always call them if i'm having an issue with any new medications.

Or maybe you can ask your doctor there locally to call Dr. Grubb's office.

I hope you can get this situation figured out soon. Good luck, i'll be thinking about you and hoping you get some answers--------------- :(

Julie :0)

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Nina,

I'm glad you were able to get away for a vacation!

I'm sorry you feel so lousy now though. I dont have any experience with Lupron so I have no advice in that dept but just wanted to wish you well.

I hope you don't have to go to the ER and that you feel MUCH better SOON :)

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Nina,

I just wanted to welcome you back too!

I am always good for a bit of emotional support...but I'm not so good in the technical support department ! :) (meaning, I know nothing about Lupron!)

I am grateful that you got to get away for a much deserved vacation. Don't worry, everyone took good care of each other here (although, I was absent with NO internet access!)

I'm sorry though that the trip had to end with such a bummer POTS flare. Thankfully, you did make it home! Oh my!

You made me laugh with your comment about those of us with poorly controlled symptoms and how you were barely coherent...it cracked me up b/c that is how I am, and now you know why my posts have so many typos! I think I am typing perfectly, only to go back another day and think, what in the world was I trying to say?????

I do hope you will feel better soon and get some answers. It would be good if Dr. Grubb's NP could see you sooner rather than later! :(

Goodnight!

Em

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Thanks for all the ideas. i might just call the nurse practioner 'cause my body is haywire at the moment. still have the migraine after several doses of midrin, lots of ice (burned my face with it when I fell asleep on the ice pack), sleep, coffee, oxycontin, a bath... out of tricks unless I'm taking the jump fully into the pool (by that, I mean going to the ER...ya never know what you're gonna get!).

More midrin in a minute, but not before telling you guys how thankful I am that you are here. :) Nina

hoping you all are having sweet dreams, and I have some on the way too

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Nina,

I am sorry you have been having such a hard time. I am on lupron right now and have only been on it for a week. The hot flashes are killing me and I also feel like my symptoms are worse overall. I keep waiting for my body to just get used to the new medication but if you read about the side effects it is no wonder that we are feeling the way we do. Can I ask how much you are/were taking per day and for how long. I am on just 10 units/ 1cc everyday. I have too experienced the migraines, what fun! I am also much more lightheaded than usual. I am wearing the compression hose and drinking my water and gatorade like crazy.

I am glad you were able to take your vacation. Hang in there, I will be thinking about you!

Susan

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Susan, I don't recall the doseage, but it was a large, single shot that I was supposed to get just once a month. It came in a prefilled container, and I had to take it to the doctor's office for them to give it to me.

There's a part of me that knew these horrible side effects were coming; but I felt like I was getting nowhere with my gyn and gastro bouncing me back to the other doctor. Bummer of it is that I don't think the shot of lupron got me any closer to an answer. Oh well. Live and learn I suppose.

Nina :)

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Nina,

I know how it is when you feel your doctors are bouncing you back and forth. I hope you start to feel better soon. Your dose must have been pretty high since it was to last you all month. I don't know if it is better to go slowly everyday or not. I acutally was on lupron pre-pots and tolerated it okay minus the hot flashes. This time it is harder on my body, thanks to the pots. I am only on it for 5 weeks total and hope it gets better soon. Good luck with school and everything you are going thru.

Susan

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Nina -

About "the good": so glad that you were for the most part able to have a good vacation. I remember the pure elation i felt after graduation from undergrad when i was able to read books of my own choosing...it was so grand.

About "the not-so-good": i don't know a thing about lupron, but i'll hope that it's the culprit for you as at least it would/will be an answer. sorry that your migraine is still putting up such a fight & i hope it abates soon. i know that i too am amazed by how badly people are doing sometimes when they post as i often am lucky if i can just browse when i'm at my worse...luckily cognitive issues aren't the first to go for me (as long as i'm flat!) but when i've had to be off all of my meds & at other bad times this past year i could hardly string a sentence together, much less type anything...i actually gave my mother her mother's day card not even signed b/c i was too out of it at the time to do so...pretty pathetic, eh? i hope you're able to get some answers & that you're back to your feeling better self again soon, particularly with summer session grad school on the horizon. it was reassuring to hear that the med alert bracelet had a use other than hospital-based too...i never would have thought of that...

hang in there...

:-)melissa

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Okay, I'll add another good note, since it seems to cheer people up (me included).

I made it through my first day of class; tachy and woozy, with my bp swinging high and low, but I made it! Thank goodness the elevator was working today, as my class was on the 7th floor, and the building's elevators are usually on the fritz. :)

Now, I will gear up to do it again tomorrow. Thanks for sticking with me through all this, the good the bad, and the wacky. :) Nina

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