Thank you ever so much!

thankyou

I am so touched by the support and compassion I have received after posting about how ill I’ve been feeling recently.  Your comments truly helped my mental health.  I feel so loved.

I’m happy to say I am feeling better.  I just took my last steroid.  (If I can help it, it will be my last steroid EVER!)  I’m still having some side effects, but the worst seems to have passed.  The steroids not only affected me physically, they affected me mentally.  A few days ago, I was convinced I was going to die.  Phew, thank goodness that’s gone now!

My back is a bit better too.  It’s still tight, but I’m having much fewer spasms.  I even started some of my physical therapy exercises today.  Crossing fingers all of this will get my back better.

I’m very excited that I’ve been able to knit!  (I do loom knitting)  It’s just that I have projects I really want to finish before Christmas.  🙂  Heck, I’m making a scarf for me, I’d really like to have before it gets cold.  hahaha

Again, thank you all for you love and support.  I am forever grateful.

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Distraught…well, not that bad.

I’m sorry.  I haven’t been paying attention to my blog and I haven’t been supporting others.  I’m sure you all think I’ve dropped off the earth….maybe not, maybe it’s just me.

I mentioned in a previous post that I hurt my back.  Um, kinda.  I started having back spasms as side effects to a medication back in May, then the med was changed and I was put on another that caused akathisia (the need to move – like restless leg all over), this caused my muscles to tighten even more.  I saw my GP about it and she gave me muscle relaxants.  It didn’t get better.  I was sent to PT.  It didn’t get better.  I was put in steroids, they seemed to help some.  I was sent to a specialist, he gave me lidocaine injections in my back.  I was much worse the next day.  After a couple of days of that, I was once again put on steroids.  This time I think I’m having every negative side effect you can have from a short dose of steroids.

These side effects are hell.  (they are getting better)  My moods, oh my goodness.  I’m so sad, I am crying all the time.  I’m scared, I keep having feelings of intense fear wash over me.  Two nights ago, I was convinced I was dying.  I’ve been having slow moving vertigo, I barely see it moving, but I feel like I’m moving, and I can’t walk without help.  My head has been killing me.  Extreme nausea has plagued me.  I can’t sleep.  and I’ve had 2 seizures.  Oh, let’s just say, I’m going through a rough time.  But don’t worry, it’s getting better.  I know my mood swings are from the steroids, but it’s hard to deal with.  Poor hubby.

Speaking of hubby, he has worked from home the past 3 days.  He hasn’t wanted to leave my side.  I’m so very grateful to have such a supportive and caring spouse.  He makes me want to be a better person.

After all of this, my back still hurts.  I still have 2 days of steroids left, and I have exercises to do, hopefully that will get me on the road to recovery.  To be clear, according to x-rays I have no damage to my bones, it’s all muscular.  The muscles simply will not relax and they spasm often.  I have not had an MRI.  I cannot have an MRI because of my cochlear implants.  If they need more imaging it will have to be a CT scan.  We’ll cross that bridge if it comes.

Forgive me this post of self pity.  I will try to post more often, and get out there and support others too.  I miss you.

 

Sitting is a Luxury

This will just be a short update on what’s going on with me and Akathisia. (literally meaning “inability to sit”).  I found a great article explaining this complex side effect to various psychotropic drugs including antidepressants and antipsycotics.  If you’re interested: Akathisia by the RxISK Medical Team.

The turmoil I have experienced with akathisia has been unbelievable.  The need to move has been overwhelming.  I can’t express how intense this sensation has been, it was consuming every part of my life.  You can read more about my experience with this side effect in my post “I can’t be still”.

I saw my psychiatrist last week and she took away one of the new medications, but kept me on an antidepressant that often helps with akathisia.  I’m happy to say that I’m much, much better.  I feel that sitting still is such a luxury.

Finally after a more than a month the restlessness is easing.  I still feel figetty and just want to shift and move a bit, but I no longer feel the need to pace until I drop, with still the need to move.   My back is still very tense.  The muscles have been tense for over a month, they simply do not want to settle.  I’m in a quite a bit of pain because of it.  I think I may need physical therapy to help calm it down.  I’ll be seeing my primary care doctor next Friday for my 6 month visit, I’ll see what she has to say then.

How about side effects with the new medication?  After all, can an drug actually cause no side effects?  I’m not sure it’s the medication that’s causing it but I’m having a hard time with my cognitive function.  That, sounds like I’m brain dead, I promise I’m not, I’m just having a hard time thinking.  I have brain fog and I’m very easily distracted, or my short term memory is shot….I’m not sure which, after all my brain is not thinking clearly.  Hopefully this is a side effect that gets better.  If not, we may be on the search for a new antidepressant.  sigh.

I promised this would be short, I’m keeping my promise.

I’m leaving you with a few articles about Akathisia that I found useful during all of this.  I learned so much.  I’m surprised I haven’t heard of this before.

 

I can’t be still…….

thedancerswithcopywrite

Today is the first day I’ve had any relief from the restlessness caused by my medications.  In my post about my side effects I mentioned that my antidepressant caused me to have restlessness and my doctor put me on something else to counteract the side effects.  I thought it was going to work at first, but it didn’t.  She changed the medication to a new one that should have helped with the side effects, instead it made it worse.  And my hair started falling out!  (not in clumps but my brush has to be cleaned at least twice a day)

The restlessness has been severe.  On Thursday I was at my therapist office pacing, and sobbing as I couldn’t be still and my muscles have been so fatigued they just can’t keep going.  I’m amazed I haven’t lost a ton of weight. (I have lost some, just not a lot compared to how much I’ve been moving)  I’ve been moving constantly.  and I do mean c-o-n-s-t-a-n-t-l-y!  I don’t feel like I can portray just how horrible this is.  I feel like my muscles in my back are tightening up all by themselves.  My back HURTS.  I just need to move.  It is very hard for me to sit here and type this post because I really NEED to be up and moving.  And yes, this is a better day.

My therapist talked with my psychiatrist while I was in the office.  She was concerned I might be going manic.  I’m not.  I do feel a little like it, the motion, the antsy feeling….but it’s different than this.  This is different.  It is in no way good.  When mania first starts with me, it feels good.  (unfortunately, that’s why people shy away from treatment so often, it can feel good, but things change)  I think my psychiatrist finally understood just how bad it was.  I don’t think the messages she was receiving portrayed the situation correctly.  Poor Stuart was calling her office a LOT.

After she talked with my therapist she changed up my medications.  Possibly because I said I wanted to be off anything that MAY cause restlessness.  Just start over.   Yes, I’m risking my sanity by switching antidepressants, but I’m doing well and I’m very aware of what I’m doing so if I start getting depressed I’ll know what is causing it.  That is the first step in dealing with it for me.  I know it will stop.

I wrote the previous part of this post yesterday (Saturday), today I’m not doing well at all.  I don’t know why I felt somewhat better yesterday, today is hard.  I wish I knew exactly what I have.  The name it is called.  She mentioned kinesia, but that encompasses so much.   From what I’ve read it sounds like I have Akathisia (A feeling of muscle quivering, restlessness and inability to sit still, sometimes a side effect of antipsychotic or  antidepressant medication – Mayo Clinic)   I’ve  been reading that some of this can become permanent.  “Please do not let this last forever.  Please don’t let it last much longer.”  I really feel like I just can’t deal with it much longer.  This is the stuff a nervous breakdown is made of.  My mental health drugs have caused extreme physical changes, this hasn’t been helping my mental state of mind, but I’m not manic or majorly depressed at this moment.  yes, I’m a little depressed, but who wouldn’t be under these circumstances?

Unfortunately, today is a bad motion day.  I do have moments where I feel somewhat normal, but that is normally when I’m really concentrating on something else.   I just want to get up and move.  But moving really doesn’t help the feeling get better.  I just NEED to do it.  I’ve never had a feeling like this and it is very hard to explain, I hope I’ve made it understandable.

I’m confident that things will get better, but I must admit I have the fear in the back of my mind that it won’t get better.  Then I try to bring myself back to the present and deal with it one moment at a time.   I CAN DO THIS!

 

*all artwork on Picnic with Ants created by Wendy Holcombe unless otherwise noted.  Please do not use this image without permission.

Side Effects….again.

I’m happy to say, for the most part, I’m doing well; but I’m having a heck of a time with side effects from one of my medications.

Normally I don’t mention the names of medications I’m having troubles with, but feel this would get confusing if I don’t use their names this time.  Please remember that medication side effects hit different people differently.  Some will have no side effects, others will be allergic.  Be smart about your medications.  Keep up with your side effects and discuss them with your doctor.

I’ll start from the beginning of this tale.

Last year my psychiatrist put me on Latuda for Bipolar Depression and it worked very well.  I was very impressed.  However, in January when I had to pay over $1000 every month for Latuda until my deductible with my insurance was met.  I decided to try a new medication.

Enter Geodon.  My psychiatrist had seen similar results from Geodon as with Latuda, so we decided to give it a try.  It didn’t help my moods as much, but I wasn’t on a high dose.  Then the muscle spasms started.  My back started hurting so much.  I could not get comfortable.  This can be a side effect of Geodon.  At this point I had met my deductible so I went back on Latuda.  I was sure all would be fine then, but it wasn’t.

It took me a while to understand what was happening to me.  I simply could not sit still.  It got worse, not only could I not sit still, I felt the need to pace.  I would pace the house.  I would exercise throughout the day.  I just had to keep moving.  It was driving me crazy.  I had a lot going on this past month so it was difficult for me to figure out it was Latuda causing my problems.  I just never suspected it, I didn’t have side effects when I was on it before, but evidently when you go back on a medication it can produce new side effects.  Finally I decided to look up the side effects for every medication I am on.  I wasn’t even going to check Latuda because I had no side effects before, but I decided to look them up.  One of the first side effects listed that you need to discuss with your doctor is restlessness.  I hate it was my beloved Latuda, but glad we figured it out.  I really have been going crazy.  Having to move all the time is overwhelming.

I told my psychiatrist how I was so restless and how it gets worse within 30 minutes of taking Latuda.  She said, “shit”.  She’s a really cool doctor, she was just saying what I was feeling.  Aw Shit!  Now what?  We decided to add a drug (Cogentin) that will help with the side effects instead of taking away the Latuda at this point.  Latuda has helped my depression so much, I hate risking my mental health by changing antidepressants, but I also hate taking a medication to stop the side effects of another drug.  Not a good place to be in right now.  I’ve decided to try the Cogentin for a while.  I may decide to change antidepressants in the future.  If the Cogentin doesn’t work, I’ll be going off of the Latuda if I want to or not.

I started the Cogentin yesterday and I have to say, I feel much more calm.  I’m a little antsy, but I’m not pacing.  I can sit still for a bit at least.  I hope it keeps on working and works even better.

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photo by w. holcombe

I had to drastically cut down on my knitting because my back was hurting pretty bad.  Today I’m able to knit more.  That’s a huge improvement.

I’ll close today with a short list of things I’m grateful for right now…..

I’m so grateful that most everything with my health is doing well.  I haven’t had a flare in quite some time, even though I pushed myself too hard recently.  I’m grateful that I have such a great psychiatrist, who listens and is willing to help me find the best solution.  I’m grateful that is seems the Cogentin is working.  I’m grateful I have friends I can reach out to when I’m not feeling my best and they “get it”.  I’m grateful for my blogging family.  I’m grateful I can knit again!

and….I’m grateful for you.

Oh Poop! Side effects are they worth it?

image from clipartfest.com

On January 25th I wrote about A Visit to the Migraine Doctor, in it I mentioned that my doctor was putting me on a new drug.  Diamox.  I haven’t been tolerating this medication very well.  I haven’t been posting as much as usual, because of some of the side effects.

After being put on this medication I started having extreme GI distress.  I had acid reflux, nausea, and diarrhea.  These became increasingly worse.  The acid reflux and nausea made it impossible to get a good night’s sleep.  The diarrhea was worse, there were times I didn’t make it to the bathroom.  I had no warning.  As I started a new diet about the time I was put on Diamox I thought the GI distress was caused by the diet.  I was wrong.  I ceased the diet and still the GI distress continued.

My cognitive dysfunction has been much worse than normal.  This is the main reason I haven’t been writing.  I just haven’t been able to think straight enough to process my thoughts.

There are times you have to decide if a medication’s benefits out weigh the side effects, as this medication did not reduce my headaches (if anything they have been worse) I’d say it’s not worth it.  So I’m officially off this medication now.  I don’t know how long it will take for me to get back in the grove of things here, but I’m happy things are getting back to my normal.

There are medications that cause minor side effects and I’ve decided to stay on them because they were helping more than the side effects were causing me trouble.  For example, Topamax changed my taste of certain foods.  This was minor when it helped my headaches.  (Unfortunately it isn’t helping my headaches like it used to, so we are working hard to find a new one that does.)

Until we can find a new drug that helps my headaches I’m stuck.  When I have a migraine, which is most of the time, I can’t think straight.  When I was on Diamox my thinking was even more muddled.  Now that I’m off it, I hope some of my cognitive function is returning.  I always have a bit of cognition problems due to Migraines and Meniere’s.  Speaking of cognitive disfunction, I am having a hard time writing this post.  I keep reading it over and over and forget what I just read.  I’ve been trying hard to keep up with other’s blogs but my memory is not working as it should, so I’m not absorbing the information a lot of the time.  I’m confused.  I can’t think straight, even more than normal.  I stopped Diamox a couple of weeks ago, I’m feeling much better, but my brain is still catching up, I think.

You must decide for yourself if the side effects of a medication is worth the benefits.  Of course, this drug was not worth it, as it didn’t have any benefits.  However, even if it had been beneficial I feel the side effects would not have been worth it.  Trade less migraines for extreme GI issues and brain fog?  I can’t do it.

Are there medications you are having side effects from but you still feel it’s worth taking?

Have you stopped a drug because of side effects even if it helps?

 

Have you tried? Do you think ___ caused it?

butterfly color

Butterfly, by w. holcombe

Hello.  My name is Wendy.  I just turned 53 years old and I have chronic illnesses, including Meniere’s Disease.  Unless something amazing happens, they are not going to go away.  Sometimes I feel I need to make this statement before anyone speaks to me.

Recently I was asked a few things about my health.  This was not by people who see me often, or have much knowledge about my illnesses.  This is how I handled a few of the questions, some of it was good, some not so good.

Have you tried yoga?  It can really help your balance.  I used to do yoga regularly until the Meniere’s Disease got so bad and I ended up on my face during a class.  It can only help your balance if you have some to start with!  After having a disease ruin your balance system, yoga isn’t possible.  (ok, this may have been a bit harsh, and some people with Meniere’s may get some help from yoga, I don’t know.  However, anyone as advanced as I am, who has been through Vestibular Therapy and still has balance issues all the time, cannot do yoga.  And if you have had a disease the compromises your balance for as long as I have, do you not think I would have heard about YOGA by now?)  

I heard about these positions you can get in that will make vertigo go away.  Why can’t you just do that?  There are maneuvers you can do to help certain types of vertigo.  However, there are numerous causes for vertigo and what causes mine can not be helped by those maneuvers. (do people think my doctors would just let me suffer  this much if it was so simple to “cure” my vertigo?)

Do you think this could have been caused by all the drugs back when you were younger?  Okay, this one caught me off guard.  I thought, what the heck is she talking about?  I may have experimented a little when I was younger, but she wouldn’t have known that.  I must have looked shocked and said, “nooooo?”  She then explained, “All those psychiatric drugs they put you on.”  I was shocked.  How could someone think that the treatment I received for my mental illness caused me to get chronically ill?  I’m sure I looked shocked when I answered, “No.”  “Well I was thinking….”  I stopped and said, “I know many people with Meniere’s disease and really we have nothing in common except some of us have relatives with the same disease.  They have no idea what causes this.”  “That’s good to hear, I’ve been so worried about it.”  “Well there is no need to worry about that.  The medication I’ve taken for my Bipolar did not cause me to get ill.”   AHHH!

This last question has continued to plague me.  Is this one of the reasons people do not seek help for their mental illness, they are afraid of what side effects the medications may cause?

I have Bipolar I disorder.  I take medication for it.  I also try to keep a good sleep schedule, eat well, keep my stress controlled, and see a therapist…there is a lot more to taking care of yourself  when you have a mental illness than just taking your medication.

I have never been afraid of taking my medication.  Each time my medication is changed my doctor and I talk about it.  We discuss exactly what it is supposed to do, any side effects, if it will react with any other medications I’m on at the time, and if the side effects are worth it.  I don’t just take a medication not knowing what it will do to me.  No one should do that.  If your doctor does not automatically discuss these things with you make sure you ask BEFORE you fill your prescription and start taking a medication you are not familiar with.  I also advise you to read the information the pharmacist gives you about your new medication just in case your doctor forgot something.  It happens, doctors are human too.

I have decided to take a medication even though I knew there was a chance it could cause damage to my thyroid.  It did.  I now have to be on medication for hypothyroidism.  Am I upset that the medication caused this side effect.  No.  I went into this with my eyes wide open.  At the time there were very few medications to treat Bipolar I and I decided the pay off from the drug was worth the side effect that it may cause.  I’m still happy I decided to take that medication and have those years as a stable person.  Truthfully, I would take it again today if that was the only medication that would keep me stable.

I would hate to think that people would not seek out treatment for any illness because they are afraid of the side effects of the medication they might be put on.  Become informed.  Know what the medications will do.  Know how it will help you and the side effects it may cause, you decide if it is the right medication for you.

Many of you may be thinking that there are times that a certain side effect is unknown.  You are right.  There are many stories of someone who took a medication and had a severe reaction.  There are stories of people taking a medication and years later they find out that it hurt them in ways they never knew it could.   These stories are not typical.  We simply can’t live in fear and not be treated because of the “what ifs”.

I can tell you, if I hadn’t been treated for my Bipolar for all these years, my life would be totally different, and not in a good way.  I can almost tell you for certainty that I would not be alive to write this post.  I will never regret taking the medications that helped save my life.