My side effect isn't listed that I can find here

nrp

I was stage 1 estrogen receptor positive 99.9%.  Lumpectomy, and took two lymph nodes but they were clean.  33 days of radiation, and I am now on year 2.5 of taking Anastrozole (Generic Arimidex).  Other than hot flashes and some body aches I have faired well on this medication.  (Began on Tamoxifen and turned into a major B****, and had to come off that for the major mood change).  Anyway, I've read so many posts, but side effects seem to dance all around what happens to me the last few days and none seem to match. First I have to say that this has happened to me before, about 8 years ago when I stopped taking Estrogen (on my own).  I went through hell, and had to wean myself off them several times before I finally was able to do so.  Anyway, my side effect that just started is the same, and it's started doing it in my sleep as well.  At least every hour I get what I can only describe as vertigo with nausea, and have to immediately lie down or kneel on the floor and put my head between my knees...during this time I seriously feel like I'm also losing my mind.  My mind is freaking out.  All I can do is try to breathe until it passes, which is anywhere from 2-3 minutes.  But each time those 2-3 minutes are a living hell.  I can guess that my estrogen is being deactivated while on this medicine, but why now after 2.5 years on it without incident?  I am 55 and not overweight (5'5, and 128#), I take no other medications.  Would love to hear if anyone else has felt "exactly" like this, and what did you do about it?  Thank you for any feedback or help you can give.

Morwenna

Could it be low blood pressure? Does it happen when you move from sit to stand etc??

nrp

Should have stated that, sorry...no, my blood pressure is perfect.  Always has been.  Take no other meds. I think it's from estrogen deactivation, but why now?  2.5 years on Anastrozole, and nothing like this.  And no, there is no trigger.  I just feel it coming, and have to get down in the kneel position as fast as possible, or if near a bed, lay down.  The sensation in my brain makes me feel like I'm going absolutely nutty...psychotic.  Have no history of that either.  But the sensation of going down is from the tip of my head to the soles of my feet.  It's just awful and scary.  Does a person with anxiety attacks have this symptom? 

 

Zillsnot4me

I have something similar but it usually only lasts for a few seconds. I've been on tamoxifen for 18 months. Take am and pm.

Only lost vision/balance twice last year. Had a clear brain MRI so it's not mets.

RO thinks I'm dehydrated. I haven't charted it to see if there are any coincidences or patterns.

I know it will stop as quick as it came on. So I stop for a moment and then plow on. Only once this year did it make me feel nauseous. Sprite took care of that.

You are not alone nor crazy. I'm sorry I don't have anything better to say. Have you tried the name brand?

nrp

Thank you for responding.  I have not tried the brand.  I also have no insurance right now.  Laid off the job after 18 years.  Keep trying to get another job and more insurance, but haven't found one yet.  Not being close to my doctors right now is enough to cause anxiety attacks.  Could be that.  I don't know.  Never had them, but the symptoms sound similar.  I have been through an enormous amount of stress the last two years.  And, just about the time you think you're going to get a break from it, this starts.  I'm at a loss. 

Thank you again,  I know I can't be alone in this.

SpecialK

Has your brand of generic changed?  I have noticed a great deal of difference in side effects between manufacturers of AI drugs - I have been on a couple of different makers of Femara (letrozole) and Arimidex (anastrazole) and found attributable side effects to each.  I was already post-menopausal during chemo but, but I have a good friend who is only 37 and experienced "chemopause" during the Taxol portion of her chemo and had the very same thing you are experiencing - basically panic attacks brought on by the hormonal disruption.  Once she was done with chemo this stopped.  She was treated with anti-anxiety meds through the end of her Taxol.  The panic attacks can certainly be brought on by stress also - it sounds like you are in a challenging time, so it is also possible that it is not the drug, but your current level of stress that is bringing this on - or a combination of the two things.  Hard to say and so sorry this is happening, hope you find a solution soon.

nrp

Thank you.  I truly appreciate your feedback.  It is possible that there has been a change in the manufacture with my recent refill.  The bottles look different then the ones I had before.  Will have to call the pharmacy to check on this idea.  I do have a lot of stress.  I mean a lot.  Fighting this battle, and in the middle of that both 80 something parents having heart surgeries, travel for that, weeks in their care, one parent dying, losing my job after 18 years, taking care of the other parent for the last 1.5 years.  Loss of sex drive (always the initiator, so hurts to lose that), painful sex (thinning terrible).  It's things I try to do the best I can with, but looking back can see how they pile up.  Changed doctors because the last one simply ignored my symptoms and my pleas for something to help me sleep (I take melatonin as that is all I can do on my own), but can't see the new doctor until end of June.  Have no insurance since losing my job.  Suppose I've been internalizing a lot for a long time.  I truly appreciate your answer...I wouldn't wish these symptoms on anyone, but I do feel a bit better knowing I'm not the only one to have them...I just feel like I'm going crazy.  I'm 55.  My husbands retired and I really want to spend quality time with him...it's like the first break I get from stress (it's only been a week as a sibling is now carrying for my parent), and I'm losing my mind.  Not fair.

Beachbum1023

nrp, I am so sorry that the short list isn't short enough, and the long list is too long! I have many side effects left over from AC/T. I finished chemo on 11/25 and it has been one thing after the other. Hard to remove stress from our lives, it is our life right now. I try to keep the side effects in check, but some days it is hard to do. Now that I have finished rads, I feel like I am adrift on the sea without a paddle.

I am on quite a few meds and supplements, I think too many. I am going to talk to my MO on 4/28 and see what I can successfully get rid of. My fear is the mix of meds is causing more problems not less. I am 58 so I don't want to be the pill popping patient, I just want to get back to life.

I am having issues getting to sleep, I stay asleep for 10 hours but it is affecting my schedule. I go to sleep late, and can't wake up. Just frustrating and annoying. Good Luck to you. Cheryl

SpecialK

Yes, that is a lot of stress!  I can relate to the sick parent thing - my mom had been disabled by a degenerative neuromuscular disease for 25 years - my dad cared for her after he retired, and then he was diagnosed with stage IV lung cancer, he lived a year after diagnosis - all of this 3,000 miles away from me.  Very stressful time, and I cared for my mom after my dad passed, she survived 4 years, spending the last 2 unable to walk or stand, so she needed 24 hour care.  I also had two middle-school aged kids at the time and a husband who was active-duty military.  I do understand! I am 58 and have all of those same menopausal/treatment issues you mentioned - it is difficult to accept the many changes since diagnosis, but I try not to stress about what I can't control and just do my best with the things I can.  I know that is easier said than done sometimes. I have had success with having my pharmacy only fill my generic prescription with the manufacturer that causes me the least side effects just by asking them to, without my oncologist having to write the prescription that way.  To use the name brand, which is usually a lot more expensive, for those who can't tolerate generic substitutions the doctor has to write "without exception" on the prescription.  I use CVS to fill my prescription and they have been very cooperative - the manufacturer I like is one they regularly have in their warehouse, but is not the formulary in my local store.  I just request it about a week from when I am about to run out and they special order it - there is no cost increase for this. Wishing you the best. 

nrp

Cheryl,

Thank you for responding. Yes, it is very difficult to remove the stress, but here I have a chance to be free of it (the first time in 3 years), and these (only what I can call panic attacks) show up.  I have been using a product called iChill I get from Walgreens.  It is a liquid.  A mix of Melatonin/Valerian Root  to help me sleep, but of course melatonin eventually stops working unless you take a week break (I call this the week from he**).  Then I begin again, and it seems to help sleep.  If you haven't tried it, you might find it gives a richer sleep (all night) without waking constantly or dreams. I also just called the drugstore and they said they have not changed the manufacturer of my anastrozole, so that eliminates the good idea that it might have been the problem. I have an imbalance somewhere...and as my doc apt is not until the end of June I'm stuck with this until at least then.

I know a mix of meds can be a partial problem, and I hope you can find some that can be removed.  As Melatonin and Anastrozole is all I am on, I can only guess my problem is panic attacks.  No triggers.  They just show up all the day long for no reason at all. 

 

nrp

Special K:

Thank you for the response.  You also have had as much stress if not more to say the least.  We just have to plow on don't we?  Without insurance I couldn't afford the name brand.  As military, there may not be a difference for you, but without insurance, it is likely the $ would jump to an unaffordable price for me.  I will ask my new doc in June when I see him.

nrp

nrp

Zills4Me:

Thank you for responding.  I am sorry to hear you also have had these episodes.  I am glad however they have only happened a few times for you.  This is good.

Just have to push on I guess the best I can,

nrp

Moderators

Hi nrp,

We're sorry you're experiencing this side effect, no matter what it's cause! There may be some helpful tips for you on the main Breastcancer.org site's side effect page on Dizziness.

We hope this helps!

--The Mods

Bren-2007

Hi nrp,

I had the same symptoms you are describing when I was taking Arimidex.  The vertigo, dizziness and severe nausea caused vomiting along with difficulty walking.  I couldn't drive when it got really bad.  It really scared me, especially the vertigo.  I was tried on different anti-nausea meds but nothing helped and I was getting more depressed.  I stopped taking the Arimidex and felt better right away.  I was then put on Tamoxifen ... with much the same symptoms, but I did last longer on this drug.  In the end, I only took the anti-hormonal meds for a few weeks.

hugs

Bren 

SpecialK

nrp - I have stayed with the generic as I have found one that has been better then others.  To get the "without exception" wording on one's prescription you need to demonstrate severe side effects (which you have) or an allergic reaction.  I am fortunate to have military insurance which has a prescription benefit.  I am wondering if you can enroll in an ACA policy since your insurance ceased due to job loss - that falls into the criteria for enrollment outside of the normal window. I have linked the info below - that way you could have coverage without waiting for a new job - if a new job came with new coverage you can always dis-enroll at that point.  There are some good inexpensive policies that may allow you to be seen earlier for this set of side effects you are currently experiencing.

https://www.healthcare.gov/coverage-outside-open-enrollment/special-enrollment-period/

 

nrp

Thank you Moderators.

It really isn't dizziness, however I am thankful for your feedback.  If it doesn't go away soon I will make an appointment with my oncologist and just pay the $$$.

nrp

leggo

Nrp, I know this is going to sound insane, but do you think you could have a urinary tract infection? Those symptoms sound like they might be. Some don't have the usual UTI symptoms. I know it sounds like they have absolutely nothing to do with each other, but they can, and do. Hope whatever it is passes just as quickly as it came

nrp

leggo,

no, it's not a UI infection.  I've had a few of those when I was in my 20's, so know what that is about.   Anyway...what I have decided for now is to stop my AI.  I can't live like this.  I have been taking it for 2.5 years.  I know I'm supposed to take it for 5.  Had a 7% chance of cancer coming back if on it for 5 years.  going to call it a AI Holiday and see how it goes.  Has anyone else ever took a vacation from their meds?

nrp

Jennie93

nrp, I recently took a 3-week vacation with my MO's blessing. I was on tamoxifen but it just got too much to bear. MO switched me to anastrazole but said it was fine to stop taking the tamoxifen right away and take "2-3 weeks off" in between. Of course I took the full 3 weeks. lol.

nrp

Jennie93,

Thank you for your response.  It is good to know your MO gave their blessing for the holiday.  Did you have any bad feelings after restarting the AI?  I mean after taking the 3 weeks off, how did you feel once you started back?  How did you feel while you were not taking them?  I heard it could take up to 4 months before symptoms abated.

nrp

nrp

SpecialK:  I did look into the special enroll.  Got all the way to the Apply button and the .pdf they gave me to read first stated I qualified etc., but I would need to send income statement of some sort for 2015.  I don't have anything to send them.  I'm unemployed.  All the options they gave wanted some form of income, paid check, W-2, unemployment, etc...have none of that.  When I tried to call they said I would be on hold for 30 minutes.  I don't think so.  Anyway.  A vacation from the AI's is in order.  I'll pay for my visits and mammogram, and the fine for no insurance just like I did this year. If I have to, I'll pay to see my Oncologist too.  I miss my BCBS big time.

nrp

Bren,

Oh my, you did have a tough time on the meds.  This is what puzzles me (about me)... I knew I couldn't take the Tamoxifen right away...within two weeks just like you.  I've been on Anastrozole for 2.5 years, and this yucky stuff just started 2-3 days ago. I want to say it could be stress, but for the first time in years I have nothing to stress over.  I'm so sorry both of the meds make you so sick, but I definitely understand you stopping them.  That is why I'm going to take a vacation from mine.  I have to see if this sick/nausea/crazy brain stuff stops.

Thank you for answering,

nrp

Maasai123

what have people been told about chances of other types of cancer recurring if we refuse to take Arimidex or tamoxifen

nrp

Maasai123:  I have been told with the meds I have a 7% increase of it coming back elsewhere in the body.  Without the meds it goes up to 14%.  I don't like the odds, but I don't like living like this either.  It's a lose-lose or win-win situation whatever way you look at .  I'm interested in other responses as well.  Thanks for asking it.

nrp

nrp

rose50:

Thank you for the information. If you would, PLEASE tell me (us) how it is going for you on the oil, as you just received it yesterday.  Could you keep us informed as to whether it helps your stress, depression?  Oh yes, and about the application.  I did put in everything except the final submit because it asked about sending proof of income for 2015.  I have no proof of income for 2015 because I'M NOT WORKING.  Lost my job last year and my BCBS in June of last year. (and I paid the fine for not having government insurance for 6 months Jul-Dec 2014) when I paid my taxes.  The stupid government form keeps asking that too.  DO you owe fees for last year.  Well the answer is Yes, but they are already paid...they don't have a slot for that.

nrp

Jennie93

nrp, you do not "owe" any fine that was already paid. "Owe" means not paid. If they wanted to know if you had any fees last year that were paid, they would have used the word "owed". So the correct answer is no.

As for the vacation, I hate to discourage you, but I didn't feel any different. My MO gave me a glimmer of hope by saying I might feel better that soon, but I knew that the SEs took months to get bad, and I knew the drug builds up in your body and takes a long time to go away. Otherwise the docs wouldn't be so fine with letting us take vacations from it.

The joint pain is no better, no worse, and I have not lost one single ounce. On the bright side I haven't gained any more weight since stopping tamoxifen. I think it's too soon to tell if the anastrazole will have different SEs.

nrp

Jennie93.

Thank you, I understand I don't owe anything.  It just doesn't come right out and give you the option to say No.  Anyway, I'm still thinking on this med vacation. Slept this morning until 10 a.m.  I haven't done that much sleeping since I was in my 20's.  Must have needed it.  So, could it be stress?  or my medication? Taking a break from both of them (meds and stress factors) for a while.  I have just 4.5 years before I can apply for my retirement (have 75% of time in) and get back on BCBS. Until then I can pay for my mammos.  I hate it, but am going to pay for my general doctor appointment in June as well along with the blood palette.  We'll talk about it.  We will see how the next few weeks go.  I'm just tired of the should I take it, can't I stop for a while stress of it all.  Letting go for a while seems to be the only right thing to do for "me", and was hoping like you have done, that others could shed some light on doing the same thing and how it went.  Thank you for your responses...I truly appreciate them. I also understand the build up, and that it may be months down the road before a change is seen.  One day at a time.

Zillsnot4me

Can you go to the mfg website and apply for the med? That way you get the good stuff at a very reasonable price. Call your onc office and see if they can help with your lack of ins too

Claritin helps with joint pain but made me nervous.

Bren-2007

Maasai .. in response to your question.  My recurrence rate without the Arimidex or Tamoxifen was about 8%.  Taking the medication would have cut that by 50% or a reduction of 4%.  That just wasn't enough benefit for me to continue with the meds.  My quality of life was severely impacted when I was taking Arimidex and Tamoxifen.  It's important to remember that most people don't have really bad side effects.  I also had hotflashes and crying spells.  I could live with the hotflashes, but not the constant nausea and vertigo.

Best wishes to you.

Bren 

nrp

Bren 2007

Thank you for your response.  I am glad to hear your recurrence rate is low.  I feel because it is low for me as well, that a break in meds to get my life together is the right thing to do...for now.  Yes, hot flashes have been severe for me on Anastrozole. 

Also, to Zillsnot4me, I only pay like 50$ for 90 day supply. I was so surprised, because while on BCBS I was paying $36 for a 90 supply, so not that much more to worry about. Amazing isn't it?  Could switch pharmacy's and pay a few dollars less, but I like the folks at this one, so the few dollars doesn't mean that much to me.

Thank you everyone for sharing.  It really has helped me in many ways.

nrp

maria26

Nrp,

How are you doing now are you still dizzy.  I have exact same thing and am also 2.5 years on arimidex.  Did  message you but you probably dont get  notified.  We sound very similar.

Maria