Dealing with constant pain and then certain doctors who refuse to try to help

 Okay, it is difficult for me to talk about these things. So bear with me...

First, my neurologist and staff are wonderful and never give up on me, but I have found out now that isn't true for all doctors who are supposed to help people in pain.

Back in May of 2022, my neurologist referred me to a neurosurgeon who works for The Center for the Relief of Pain. 

Quick backstory, since my chronic migraines became constant in January 2008, my neurologist and staff have done many things, hospitalizations, specialized clinics, and always look out for what is new coming through the FDA to help me.  Problem is that either a treatment or medication doesn't work or stops working because my body gets immune to it. So they work to look for new things that are being researched and approved.

I was on Vyepti, IV treatments 300mg every 3 months, which helped at first to get me back reading, and lowered my general pain level from 6-7/10 to 5/10 but with spikes as usual.  However, my body was getting used to the treatments and the help lasted less and less often.  This was after a long list of treatments that I had tried.

Anyway, so I was referred to the neurosurgeon for a surgery trial and then if worked, implant to help with pain and lower it.  After over a year of jumping through hoops that the neurosurgeon needed me to do, this last August at the beginning, the surgical nurse said that she was ready to schedule my trial surgery but wanted me to see the doctor one more time first.  Later in August, I went with my mom and sister to the doctor and he came in and talked to me about my migraine.  

Then he said that my migraine was TOO SEVERE and TOO PERSISTENT to do the surgery and that he wouldn't even do the trial to see if it would work.  As I sat there crying, and my mom and sister and I begged him to at least do the trial to see if it might work, he said no, and then said that we could use the room to cry in for as long as I needed to because the next patient wasn't going to be there for awhile and he walked out. My Mom got up and said, we aren't staying here, and we left.  My neurologist was shocked that a doctor who works at the Center for the Relief of Pain wouldn't help me at all in any way and would treat me like that, after over a year of jumping through hoops.

I am blessed that my neurologist and staff still refuse to give up and have moved me to first Qulipta for a few months, which didn't work at all, and now to Emgality. AND have increased the number of nerve blocks and have referred me to a new pain doctor to try something else.  I feel so grateful and blessed to have them.  And to have my Migraine Massage Therapist, it only helps reduce pain for an hour, but an hour is better than nothing.  I had been blessed to have a wonderful acupuncturist, however, he cannot see me anymore as he is close to retiring.  I am going to go back to an ART specialist that I saw before, but stopped for financial reasons, and am really looking forward to see him again.

Also, the other thing difficult to talk about but should help to do so is that last April my brother almost died and we were in fear for about 10 days.  He is doing so much better now.  But my pain level is off the chart.  A huge trigger for me is not just stress, but more so the let-down from stress.  I have not been able to get below an average of 8/10 since April, so I had been really counting on the neurosurgeon and when he said no, I am staying at a high level of pain.  I could sort of function with a 5-6/10 level of pain after so many years, but this is so bad that I need a break.

Thank you to those doctors who won't give up on me!

Been SO long - the Migraine Story

 I have not posted on my blog since 2011.  I started out in my teen years to mid-twenties with migraines 4-6 times a year.  Really bad and lasting for almost a week but I got by.  I had other chronic illnesses that were more at my top to deal with.  I have Hypothyroidism and NCS (neurocardiogenic syncope).  

My thyroid wasn't working at all - and I kept being miss-diagnosed with mental issues - bi-polar, etc. It was a long path that after two suicide attempts and many problems of me hallucinating, etc., led to my Mother and sister putting me in a Psych-Ward against my will at age 23.  No one ever checked my blood-work for thyroid issues and I dropped so much weight I was down to 80 pounds at one point.

My NCS causes me to pass out - it also had not been diagnosed at that time, just pushed to the side.

I was angry with my Mother and sister at the time for having me committed.  BUT - it turned out in my favor.  I was considered at-risk so was being watched 24/7 and in the line for lunch I had an NCS episode and passed out.  By the time they woke me and got me into a wheelchair and then took my blood pressure it was 60/40 meaning it had been a lot lower when I passed out.

The doctors' got concerned and moved me to telemetry where my life was saved.  Telemetry did a full blood screen and found my hypothyroidism.  Apparently I was so bad they said they didn't know why I wasn't in a coma or worse.  It was the worst case the hospital had ever seen.

Most people with hypothyroidism gain weight and have high blood pressure.  I was underweight and always and still have low blood pressure.  Which happens in about 10% of patients but still wasn't a good enough reason to be miss-diagnosed for 5 years!

My hypothyroidism finally being treated and all the mental issues went away.  Except for my Anxiety Disorder and Attacks which I still have and make migraine worse. We still had to deal with why I passed out.  After tests - it was NCS - there are many kinds of syncope - NCS is where when your adrenaline is pumping (normally your blood pressure increases) my blood pressure drops down to about nothing and I pass out.  I had an entry in here more about my NCS.  Anyway, your body corrects itself and you are back but not great.  It can also cause what might look like seizure movements but are not.  

So, we are dealing with all this and then I start having migraines even more often 1-2 a month from mid-twenties to early thirties.  And some that last up to 2 weeks.  But I am a single mother, finishing college, while working full-time,, and then off to my career.  I was always a go-getter, mostly because when I didn't have a migraine, I felt I needed to do as much as possible before another came along (I Know I was likely causing more by doing this but I had so much work and family.  And I loved my boys, of course, and I really loved my job.

Now during this time I am having tremors, which my Mom has too, and turns out to be Essential Tremors or Familial Tremors by another name.  Supposed to be mild until much older.  Unless you start having chronic and then constant migraines which jumped my tremors into overdrive.

Early thirties to late thirties I begin to have chronic migraines - I begin to have trouble telling where one migraine ends and the next begins.  When I am semi-pain free I work as hard as I can.  I am even working through migraine pain as much as I can.  I keep lights in my office off and avoid conference room meetings. And I learn to fake not being in pain fairly well, even though I want to crawl into a cave.  One Partner in my firm, I could never fool, she could see slight swelling around my eye and forehead.

In 2008, I go on short term disability and spend most of that time in the hospital here in KC.  Then I go to MHNI (Michigan Head and Neurological Institute) and am in that hospital for 3 weeks.  See in January of 2008 I got a migraine and it never went away.  They managed to get my pain down to a 2-3 on a 10 scale and told me I could slowly go back to work but then only work 40 hours a week.  (I was a CPA and when I went to 40 hours a week, they cut my salary.  Odd, I know, but they did, even though I did still keep working about 50 - 60 hours a week.  This worked out until my pain got more and more with one partner (I changed to working directly with clients to being the international an state advisor to the Partners and Managers with clients with these issues.  And I did on-line training.  So I was working not directly for the one partner who I found out had been taking credit for years for my ideas and work.  And once I was out from under her, others discovered my talents and caught on - and would double check with me what she had told them on her own which at times was wrong.) So the more she as a Partner put pressure on me, the more my head could not stay at 2-3 and got worse and worse and worse.

By 2010, I went on full-time disability. and then things only got worse from there.  By 2011, I had too much trouble with the looking at computer screen, thus, I could not keep up with my blog or keep up with the migraine and chronic illness on-line communities I was a part of.  

Then came an inability to even read!  I used to read 20-30 books a year and dropped to none.  My wonderful husband and his family continued to buy me books I like so I wouldn't give up hope. I can't thank them enough.  I refused to do listen to books because I just have a way of hearing characters myself and didn't want someone to change that.

My neurologist and her physician's assistant never gave up hope.  I would never be without a pain, but to reduce it as much or for as long as possible was always the goal.  They sign me up of call new prescriptions without even telling me because as soon as they were on the market for them it was Go-time.  After so long they never would let me give up hope that at least I could get back to reading and computer.  

By the way, I have vasospasms so I can't take any kind of triptans.  

Aimovig after a few months I was reading! I was thrilled. Still horrible pain but READING!!! in small bursts because too much caused migraine to explode to ionosphere.  

Then this year Vplexy, - off Aimovig - Vplexy is the newest treatment - an IV treatment every three months. And here I am updating my blog.  I still have tons of pain but I am HERE!!! I did not DISAPPEAR!!!

 So this is my story or some of it anyway - there is the loss of friends and family who don't understand, and pain continues to haunt my life but I am trying, and that is something to celebrate.

A Therapist Who TRULY CARES!!!

I have been seeing a therapist for awhile to help me deal with dealing with chronic illness and my anxiety issues.  She is so wonderful and she talks with my other doctors - she is not a psychiatrist, she is a PhD psychologist.  She works so well with my other doctors so we are all on the same page.

I had seen psychiatrists and psychologists in the past and hated them all and was nervous about doing it again.  But she is so different.  I've been seeing her since 2008 and it is amazing now and for awhile now that when I walk into her office - she always turns off all the lights for me! - my body is tuned to auto-relax and my pain level even though high right before - lowers.  I've told her I would set up shop and never leave her office - as a joke.  I think that when you find a TRUE SAFE PLACE that with anxiety making chronic migraine worse that after awhile your body recognizes it and does do an auto relaxation response - less fight or flight response.  I also feel the same way at my acupuncturists office.

But I wanted to tell you about how much a real therapist who truly cares will go for you.  I'll add that she says she sees a lot of strength in me and that she even has said she admires me and uses my (anonomously) experiences and reactions and abilities to learn for other patients.

Last year - about a year ago actually - I had an appointment and went to my car to drive there - it's close I don't drive often and only to doctors and close by - anyhow, I go to my car and it doesn't start.  Well, you don't go try your car an hour before you have to go somewhere to make sure it works and then go back inside, do you?  So, it's a surprise and a problem.  I call the receptionist and tell her and here where I live a cab would take too much time.  I tell her I guess I'll have to cancel my appointment and pay the fee.  She says let me talk to the therapist and get back to you.  She calls me back and says that my therapist wants to come and pick me up and doesn't have an appointment after me so can take me back home as well.  WHAT???  I have never!!!  So, I give her the address and directions and my therapist does this amazing thing for me.  So incredible.  We did not talk appointment stuff during drive - only small talk.  She is very strict about therapy only during therapy session.

SO - today - this morning - I have an appointment and I have since moved but go to my car (I have not driven hardly at all in a while - no one lets me and it isn't a good idea but I thought my hubby was driving the car every so often) AND once again it won't start?!?! - can I believe it? NO.  I call the receptionist once again and talk through the same issues.  This time she suggests that my therapist may be willing to have the appointment via phone.  And she was - since the phone can aggravate my migraine and tinnitus - I put the phone on speaker - also painful - so put on headphones and plugged into phone.  It was great because I REALLY needed to have my therapy session.

THEN - if you can believe it - my therapist suggests that for our next appointment and possibly those after seeing how it goes that we schedule when she can come to my home and have session here!  First she said she could pick me up and take me home and then she said - or I can just be there!

I couldn't believe it.  All I can say is that is how you know when someone truly cares about your health.  I didn't have to ask - she gave.  She is very professional but is giving!  To go out of her way for her patient is unbelievable if it hasn't happened - it is believable. 

Also huge kudos to my other doctors who also go out of their way as much as they are able - so much caring.

I am so grateful!!!

As always love and best wishes

Always,

Elizabeth

Another guest post - My Momma dealing with Cancer and hair falling out

I couldn't help it - when I read my Momma's post for yesterday and talked to her today about how she shaved her head due to the chemotherapy - it was too powerful.  She states that she had cut her hair short to get ready for the fall out and then when it happened she was upset and did she have the right to be?  And most importantly she expresses such positivity even in the face of such hardship and it is so amazing.  I am awed by her.

As I mentioned in my last post her website for her cancer info is http://www.nancyjo.info which gives a place for her to vent and for everyone to give her support and updates/schedules for her medical treatment.

So, without further ado - I give  you my Momma via http://www.nancyjo.info Nancy's updates for June 21, 2011 - cancer a$$ kicker!

Today, the hair doth fall…. I reached up to pull down a bang and the whole thing came out.  Now I knew this was coming but it hit me kind of hard.

I called Carolyn and she said you knew this was coming “you’re not crying are you?” … “No” I lied but I knew she was right…. it’s like when Tom Hanks said “There’s no crying in baseball” … how do I get to say … I cut my hair so I’ll be ready, then say I’m not ready.

It looked like rain outside so I thought I’ll sit out here and have a glass of wine and watch the rain fall… but even the world knows that this is not a problem… the sun came out as if to say “Bitch, quit it” … so today is a great day and tomorrow at 11:15 I’m getting my head shaved.

I remain constantly amazed at my Momma's strength.  I shared with her the spoon theory and website

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ by Christine Miserandino that helped me so much years past when I was introduced to it.  Her main website is http://www.butyoudontlooksic.com 

 

Anyway, my Momma grabbed on to the idea so amazingly well - seemed like better than I did and she talks now to me about how many spoons she has left before she decides to do something else for the day.

 

Love and Best Wishes to All as Always

 

Elizabeth

Thank You Lord, Ya Done Done It Again!

This is a guest post - the guest being my Momma who is going through cancer and Chemotherapy.  She doesn't have really any insurance and we have worried a lot about her dealing with the financial issues and costs while she needs to focus on getting better.  True to form, my Momma - is so positive.  We - her best friend started and then we spread the word - had a first fundraiser to help with her medical bills on June 5th.  It was a fish fry and raffle.  It was awesome.  This was my Momma's post on her website - http://www.nancyjo.info  after the first chemo treatment and to thank everyone for the fundraiser.  And I adore how she signs off as Nancy the Cancer Ass Kicker!  My Momma so true to form. 

The Title of this Post is a Phrase that my Grandma always used to say when the Lord got us through another battle or just another hardship - Thank You Lord, Ya Done Done it Again!  And will be our Team's hat's at the Kansas City Komen Race For the Cure - which we have done as a family for YEARS.  We have known so many who have survived or not survived breast cancer and Momma always has made us - and we are happy to - give back!  We walk under my Grandma's name as a team as she survived breast cancer although has since passed but we feel her with us everyday.  We also generally every other year do a family fundraiser for a local charity in need - however this year - we had to let that go in favor of Momma.  Momma pushed us to give back to our community as well as to causes.  And to WORK for them.  I wish I felt better.

I wish I could sign off as the Migraine Ass Kicker - but I am feeling like I am in a losing battle.  But NO MATTER - MOMMA is what matters and her first!  So, I have below her post at the website linked and mentioned above after her first chemo treatment because I found it SO inspiring and I hope you will too!

From http://www.nancyjo.info

First, I want to say I’m sorry for taking so long to add to this blog. Everything has sort of been happening faster that I can take it all in.

The fundraiser was amazing, but not just because of the money we raised but the great feelings of hope and love that I felt. My nephew came from Wichita… my cousins from Spring hill… my kids and their spouses and their families and friends, so many friends. I know my kids were just as grateful and amazed at the amount of love and turnout that was there. Plus the whole Ribbon Room family too. Carolyn is the most wonderful person in the world and Brad is so supportive. He and John nearly melted cooking all that great food. What a send off to my first Chemo… it’s no wonder things went so well! Thank you, Thank you, Thank you!

Monday, I got the port put in… hurt but not horrible. I now feel like a Borg, ready to be hooked up to receive the stuff that will kill the stuff. Lil Ron and Jane took me and I was the first one of the day. They were supposed to leave the needle in (they didn’t) so I had to have it put in on Tuesday… hurt, but not too bad (this may be a repeatable phrase a lot).

Tuesday, Chemo… this really went well. They load you up with stuff to keep you from getting sick first so I was relaxed and a little high. The actual Chemo did not hurt, just seemed a little odd knowing that you are being filled with poison. Veronica and Jane stayed with me and we snacked and talked and tried to come up with a game plan with all the different agencies we could apply too. Veronica is doing an amazing job calling and working with the agencies and billing people.

Wednesday, plastic surgeon did not have a lot to say as we don’t know how things will work or how much surgery I will need. But she took pictures and said she was ready to do whatever needed to be done. I liked her and am sure she’ll have a plan when she has more information.

So, that brings us to today, Thursday, I worked today and though I’m really tired I think it went well and will help me keep my mind off of other things. I also got a shot Wednesday that will help me make more white blood cells as well as make me feel like I have the flu. I know the flu part worked – let’s hope the white blood cells did too.

I’ve not been sleeping well, but I think that is a lot nerves and medications, but I’m very tired tonite so I hope to sleep better.

Thanks for all the good wishes and love. I so appreciate everyone of you.

This is Nancy the “Cancer Ass Kicker” signing off.

1 Comment

Drama, anxiety, drama, anxiety....

I don't know how to even start.  It's been awhile since I've been able to be on the computer for any length of time.  I haven't been doing so well with the migraine and all my other illnesses/disabilities all feeding off each other don't help at all!

It seems that any activity I gear myself up for and build up my adrenaline because I still want to do things - but it comes at a cost - a crash of pain after.  I went to see "West Side Story" at the Music Hall in April and went to see "Rock of Ages" at same Music Hall here in Kansas City in May.  Awesome - but at a cost.

My youngest son graduated high school!  Awesome and so proud of him - but attending was also at a cost.

Then I got hit with the most terrible news - my Momma has a tumor in her breast.  As we waited for the results of the biopsy, my anxiety disorder took full hold.  I was having attack after attack after attack - so much so I was starting to hallucinate hearing things - like someone in the house coming to get me and seeing things in my water and things tasting funny and oh my the smells - like all of my senses were in hyper-drive.  I was so scared I kept almost calling for an ambulance but stopped myself because I wanted the focus to be on my Momma not on me being in the hospital.  Momma thinks I just had the flu.

I got better - a lot better from where I was thinking I was dying and feeling like I couldn't breath - but anxiety still high.

Then, bad news, the biopsy for Momma was malignant and then after her appointment with the oncologist, it is large and grade 2 meaning it is very aggressive.  They cannot do surgery until they do at least 4 rounds of chemo first.  I want to focus on Momma - my anxiety is high but I am doing that and taking as best care of myself as I can so that I can focus on her.

Then to make things worse for some unknown reason my brother and ex-husband (father of my kids) who are friends, which I have always hated, but dealt with, have started crap with me attacking me and threatening my kids and telling them things that aren't true.  I cannot figure out what this is about.  All I know is that all 5 of us siblings got together to talk about Momma and my brother started up with me and I said I didn't want to get into anything because every energy and everything needed to be about Momma. 

Well, he kept on me so I walked away.  He followed and I said I won't fight with you because it all has to be about Momma - nothing else.  Whatever you have on me, let it go and leave me alone - focus on Momma.

That didn't work - well, it did for me - he left me alone.  He escalated things by calling my ex-husband and then my kids and my ex calling my kids and threatening them and saying lies and frankly nasty things about me that no child - even as an adult aught to hear true or not - although all were lies.  And physically threatening my 22 year old son. 

When I still didn't respond or react - trying to diffuse the situation - AND MY KIDS KNEW THEY WERE LIES - so we could re-focus on Momma.  I today get a text from my brother that "I am no longer your brother fyi" - what?  The argument wasn't even about anything that he was trying to start that I walked away from - just arguing to argue and I wouldn't do it! 

Then my brother calls my son and tells him that my ex-husband is my brother's family and if my son is going to defend me then HE is no longer part of my brother's family either.

All I can think is WTF?!?!?!?!

I will not ever tell my Momma about this - she needs to focus on her not on whatever this is.  But it is also sad because she is also a friend and I can't talk to her about something that is hurting me and my kids.  But that is fine - best that she focus on her because she is going to need it and I can handle it.

I say I can handle it and I can.  But, my anxiety level is now hit by pain, by treatments that aren't working yet, by my Momma and worrying about her and now also by this BS. 

I send out prayers that I can handle the stress and anxiety so my health doesn't get any worse.  I send out prayers that a calming hand will allow me to focus where I need to.  And I will NOT REACT to this. 

I always thought that walking away/not joining the fight diffused situations - but somehow it has escalated this tiny thing into something beyond my comprehension?  I wanted to talk to my therapist this week about my anxiety and my Momma - and now I have to bring this into it as well for her to be able to help me.  It just seems ridiculous and insane!

I try to think that my brother being worried about my Momma has him a little out of his mind - because it has for all of us.  Just not this way he's going.  BUT, it is NO EXCUSE for my ex-husband to threaten his children and say the things he's saying.

I stand by that I will not react or respond to this because my children have said they can take it and that they believe in me.  I stand by that that is the best way to not escalate it further and to if not diffuse it - to be able for me to focus on Momma.  And on my own health.

I wanted to write a post about the details of my anxiety disorder and the attack.  But I guess I just needed to get this off my chest in some way without escalating things.  Because he nor any of my family read my blog.  So, I can send it out to space without escalation.  And I can ease my anxiety perhaps a little by writing.

As always I wish you all the best of health and the best of everything,

Elizabeth

My Botox eperience

For my migraines, I had my first Botox treatment in late December.  We have scheduled a second for the end of March.  I was aptly told that it would likely take 4-5 treatments, every 12 weeks, in order to see if any progress could be made with my migraine.

The first treatment did not effect my migraine or my cervicalgia, however they also did injections in my traps and my back and shoulders are so tight with so many knots, it actually after 4-5 days released some of the knots.  Not all, but progress.  I am hopeful for more progress there and then up into my neck to start working on my cervicalgia.  Working on this should help the migraine as one feeds off the other.

Interestingly, when I was at the neurologist yesterday and was mentioning how my Essential Tremor has, although improved some from last September, is still very bad in my left arm and hand mainly - although present and seen in my right hand - it acts up with any activity.

The interesting thing - my neurologist suggested and ordered more Botox and is going to have the neurologist who does the injections (they already were increasing number and amount of Botox) to put injections in my arm and see if it helps any my Essential Tremor.

I am excited, although patient and realistic, to see how things go. 

I have heard from others how sore and painful their Botox experience has been.  For me, my doctor gives me two Vicodin and a Lidocaine numbing cream for before.  I take one Vicodin 2 hours prior and one at the time of my appointment.  The Lidocaine cream I put on - well someone puts on for me - an hour before.  And I did not have this soreness and painfulness.  The injections did hurt - but no where near how bad my migraine hurts so easy to brush off for me.  I also received Lidocaine patches for my traps for after the treatment to put on right away and then again the next day also because they said it would be really sore.  That helped a lot and then I didn't get the experience others have mentioned.

I have heard others do not have doctor's give them the meds for this pre-treatment and perhaps it is cause of more pain.  I know I definitely said I needed the vicodin again for my next session because what I had heard from others and I thought that must have tempered it.

I also can say that for my migraine - Vicodin does Nil, Nada, Zilch - no effect or help for migraine pain.  I know others take Vicodin for their migraines and it helps which shows everyone is different - but for me, nothing.  Same for other narcotics that I was previously given for migraines - Oxycodone and the like - did nothing for the pain.  Maybe made me "care" less - be more out of it - not the Vicodin but these others - but did nothing to temper the pain.  But did hinder my thinking ability even more than the Migraine does - along with other chronic illnesses - so I don't like them personally because I like a sense of control, even with the constant pain.

Anyhow - those are my thoughts and update on my Botox experience.  Next up to look for - my month long drama with a problem with medications having nothing to do with doctors or prescriptions but insurance companies and going without and a change that made February so foggy.  Thankful for my appointment yesterday that straightened some out and already seeing the me back again some.  Hey there - missed you.

As always I wish you all the best health and best wishes.

Elizabeth

copyrighted by Elizabeth Wakefield