We have a difficult decision to make and could use some advice

Lizze is supposed to undergo another headache infusion next week, beginning on Monday and lasting for three days.  On the forth day, she’s scheduled to receive botox injections in certain places around her head. 

Botox is a newer treatment for chronic migraines.

I haven’t heard of any really inspiring or confidence building testimonials, showing someone deriving any relief from these injections. 

Lizze and I were talking today and I’m thinking that this isn’t such a good idea anymore.  One of the biggest side effects to Botox is worse migraines than what you started with. 

That’s not a good thing.  That’s not a good thing at all. 

Here’s what’s got us rethinking this procedure.  Lizze was just given a medical case manager through insurance.  She spoke with Lizze yesterday and wants to really push to get Lizze the help she needs but can’t seem to find. 

Lizze was told the first step is to find her a better doctor.  Specifically, a better neurologist.  That’s a top priority and one that will begin immediately. 

One of the reasons that Lizze is willing to go through with these procedures is because she’s afraid that if she doesn’t, her doctor will stop treating her.  It’s jot like he’s doing a great job in the first place but he’s considered a top dog in our area. 

When we had her to the Headache Clinic at the Cleveland Clinic, they did really do anything but interview her and then recommend the Pain Rehabilitation Program. This isn’t Drug Rehabilitation, it’s supposed to be a way of helping her body to change the way it perceives pain and the goal is to be as minimally medicated as possible.  We were  also told that they won’t treat her unless she enters the program. 

Unfortunately, we can’t afford it right now, so it’s not an option.

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Here’s the bigger issue, at least as far as I’m concerned.  I truly believe that we will not be able to provide her with any relief until we get her into a better place, emotionally. 

While she’s in therapy at least twice a week, it’s not enough. She needs a psychiatrist that specializes in severe PTSD, grief, severe Depression, Chronic Pain and Menopause. These are the biggest things that are impacting her life..

In the last year alone, she’s lost 8 people. Some were family and others friends. Their passing has been very hard on her.

She’s like a sponge and just absorbs everything and doesn’t cope or deal with anything.  It’s physically destroying her, from the inside out.

The doctors and specialists in our life have said that there isn’t a scale that can possibly measure the amount of severe chronic stress Lizze and I have been living with for the past decade.  Chronic stress is very real and can have a very real and very serious effects on the body. 

I’m feeling that the priority must be her psychological and emotional health. I don’t think we can make any progress until that’s addressed.

Thoughts?

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Kim Waite-Williams

I would go ahead and try the botox treatment. It wears off in a matter of months, and if it doesn’t help, no harm, no foul. If it DOES work, then she can get a little relief and might be able to address some of the other issues. I think the pain management program would be best for her, if there was a way to get it covered. Hopefully her new case manager will be able to help. I think there’s a lot of fear with getting healthy, and that causes its own stress and anxiety. Then it’s a horrible cycle of chronic stress.

Beth Temple

I agree with you that notice will change until she gets treatment for some of the other issues she’s having. As someone dealing with chronic stress, depressing , anxiety and tension headaches, I somewhat understand. I’ve started swimming as stress relief/ exercise and it’s doing wonders for both. My neck isn’t as tight, I’m less stressed, less headaches. I’ve heard of Botox for migraines but haven’t heard good/bad/ugly. Personally, I’d be terrified. Can’t be undone (that I know of) and if you have side effects, it could be torture.

Yajamalu Charity

Another thing I did is that I started noticing when A headache was coming on my neck. I felt a bother ness and heavy compression on the back of it and back of the head until the center. So what I started to do is drink two tylenols before the headache starts. And its still working. Now I dont have to drink any pain killer every day.

Yajamalu Charity

I hope everything gets better with all of u. But yes the most stress she have, the more migraine she will gain. She have to relax some how. Yoga and exercise really help a lot. She needs massages and saunas. Do things that she really likes and a lot of support u two needs. Medicines doesn’t always fix this. Food have an issue in this too. The more I relax and meditate the better for me. Well i don’t get this headaches any more. I did yoga and a lot of meditation with music and ocean sounds. Also out side at sun down walking on the beach.

Michelle Lee Weiand

I read your story. I lost 4 people in a year and other stuff. I am not a prent. In my opain we all need time to heal. I know how bad the migrates get at times. You know your child. How bad is her migrates? I think she needs some psy help. Maybe it cause her headaches. Like I said its up to you.

Lost and Tired

upliftingfam thanks.  🙂

upliftingfam

This is an article that I found, it wasn’t the one I was talking about but it might be helpful. I have an appointment on Wed, ill see what my dr says for my case.   http://chronicfatigue.about.com/od/treatingfmscfs/a/fibromyalgiamed.htm

Lost and Tired

MikeNYvetteKennedy Thanks Vet 🙂

MikeNYvetteKennedy

I think you are absolutely right.  I think that sometimes a lot of physical pain is caused by emotional/mental pain, so getting all that under control may just help her physical pain as well….the problem is, how do you do that?!?!?!  I feel for my sister and I wish I could take her pain away and put it on me.  Its almost like your damned if you do and damned if you don’t.  The Botox could end up making her worse, but it could make her better.  One of the medical accounts I type for is a neurologist and he does Botox for headaches all the time.

upliftingfam

I was going to make a suggestion but I can’t find the article.  I was researching meds the other day because I couldn’t afford to keep taking cymbalta.  There is a new drug that is on the horizon for Fibro and there is an off the label drug that helps with fibro and migraines but i can’t remember the name of the drug.  🙁  Its frustrating when they don’t have an answer.

Lost and Tired

AutismAdventure thank you very much.  You’re right, this is a vicious cycle.  The pain makes the depression worse and the depression makes everything worse.  We’re trying to attack this from multiple fronts, while still addressing the worst parts.

Lost and Tired

rjones22 I’ll take that 2 cents.  Thank you.  🙂

rjones22

of course i am giving my 2 cents on this (always ignore if necessary for real) I am so thankful she has a case manager. that is great they are on the patients side. If it were me, i would get the three day pain thing again, i would get the first round of botox and get in to the new neurologist and get that standing mri if you can. You are doing good on the stress end, she is in therapy what else can you do. you have a very hard real life that is stressful. IT IS REAL. it is what it is and i want every type of help thrown at lizzie as possible. I just read about Gavins crisis and feel for her again, if anything bad happens to my kid, it can put me on the floor (of course we get up) but that is her (yalls) kid and she will stand anything for him. Long story short do everything. I am excited about the new nurologist

Lost and Tired

Tammymcgann Lost and Tired  KathyKohlBuehler I agree 100%…

Lost and Tired

Tammymcgann Lost and Tired  KathyKohlBuehler okay.  That area sense.  It either works or it doesn’t.  Thanks. 🙂

Lost and Tired

Tammymcgann thank you.  This is all beginning take sense.  🙂

Lost and Tired

Tammymcgann MonicaRobertsSnyder awesome. Thank you.  🙂

Lost and Tired

MonicaRobertsSnyder thank you so much.  Would you be willing to share the name of your specialists? You can send me an email if you want. Thank you so much for reaching out.  🙂

AutismAdventure

If you feel hesitation about it…I would go with your gut.  I also think you are right about the stress.  Stress does terrible things to the body and I am realizing that part of my problems might be stress related or at least made worse by stress — at this point even positive stress.  I had something recently that I was planning and really excited about and once it was finished, I was down for the next 2 weeks. 
I don’t know much about EDS but, I do think your idea of making sure the emotional is taken care is good but, also know that chronic pain brings on the depression as well.  If the chronic pain goes away, so will some of the depression.
Also, stress can cause intestinal permiability, the result being that you body starts having an antibody response to all types of foods.  Sensitivities or allergies.  When you consume those foods then you deal with chronic inflammation.  Which, in turn can also cause depression.  So dealing with the physical at the same time, I think is important.  Unfortunately, it is all a big circle so dealing with only one may not be as effective as dealing with it all at the same time.
I’ve been trying to deal with the physical without the emotional for quite some time and have not been effective and am just now exploring trying to help the emotional, even if it just means taking an antidepressant so the stress isn’t so bad.
Is your wife taking Metanx?  That would be a great thing to try!  It takes a while to work but, it can do wonders if she has any type of b12 or folate deficiency.  Even if it doesn’t show up in her bloodwork, she can have a cerebral folate deficiency than can only really be diagnosed by a spinal tap but, that isn’t necessary, it won’t hurt her to try it if she doesn’t need it.  But, I can’t see that being the case.

MBee

Since you suspect EDS, you may find some wisdom in this blog…
http://lisadeflamingos.blogspot.com/
She is struggling with EDS and some of her journey may help Lizze chart hers.

Tammymcgann

Lost and Tired  Tammymcgann KathyKohlBuehler And honestly, if a doctor is telling you otherwise . . . Hmmmm, I don’t know how I feel about that.  I would do some research on your own when it comes to that matter because believe me, Botox either works the first time or it doesn’t work at all.  Anything you’ve heard to the contrary makes me suspicious . . .

Tammymcgann

MonicaRobertsSnyder I’m PERSONALLY so grateful for your reply because I KNOW my friend needs spinal fusion.  So the terminology you’ve just used is extremely helpful for me.  And just to clarify for Rob: the “Standing MRI” that I mentioned–Monica is using the more accurate name for the same MRI–“an upright flexion and extension MRI”.  So same thing, but Monica’s terminology is far more correct!

MonicaRobertsSnyder

Rob, I follow your story because you were a Betterment recipient.  My daughter Danica was the year before you and I was the year after.  We both have EDS and one of the recipients this year also has EDS.  Everything about Lizzie sounds like Ehlers Danlos and the MANY comorbid conditions that go along with it.  She needs a neurosurgeon but one that believes in and understands cranial cervical instability.  She needs an upright flexion and extension MRI.  My surgeon is in Maryland as is the other girl I mentioned.  It is a long arduous process but I can tell you I am so much better.  I have similar female issues and hematological issues as swell as immune system ones.  I had an LP shunt put in last week and have not had a headache since.  I have also had a decompression of the braink fusion of skullbase to C2 and tethered spinal cord release.  Understanding a connective tissue disorder and how it causes pain EVERYWHERE is critical.  There are very few geneticists or neurosurgeons who believe us and are willing to treat us.  I pray for your family often.  May you have wisdom with each next step you take to give Lizzie the best life.

Tammymcgann

Lost and Tired  Tammymcgann KathyKohlBuehler I worked for a plastic surgeon for years so I know a thing or two about Botox.  And I’ve had it done myself.  Here’s the deal:  Yes, she will need several sessions, but that’s a bit misleading.  The Botox will work THE VERY FIRST TIME she gets it.  HOWEVER, she will need to continue to get injections every 3-4 months.  So if Lizze doesn’t get relief from her first round of Botox, then it’s a dead end.  The 2nd or 3rd time she receives it isn’t going to be any different.

Tammymcgann

Again, my blog post about Ehlers-Danlos (and if you haven’t figured it out already, I’m long-winded!)
http://celiacsquirrel.com/category/ehlers-danlos-hypermobility/

Tammymcgann

I’m sure Lizze has THE EXACT SAME problem that my friend
has–because of joint laxity, her neck isn’t properly supporting her head.
Because of that, her head sinks down a little, putting pressure on the brain,
causing DEBILITATING migraines. There are several Ehlers-Danlos support pages
on Facebook that could offer her A TON of good advice. I joined several of them
to ask questions for my friend who has EDS.
So the Botox may act as a temporary bandaid, but she may need surgery to
correct the problem.

Tammymcgann

If Lizze suspects she has Ehlers-Danlos DEFINITELY have her see a Neurosurgeon! But MAKE SURE it’s a Neurosurgeon who specializes in Ehlers-Danlos. My brother’s Neurosurgeon is the Chief of Neurosurgery at TuftsMedicalCenter in Boston. He corrected my brother’s Chiari Malformation. He’s one of only TWO doctors in Boston who are known to perform Chiari Malformation decompressions. So the guy is incredible. But when it came to asking him questions about Ehlers-Danlos . . . USELESS. Thankfully, he passed my message along to a Pediatric Spinal Neurosurgeon that he works with. Now THAT guy knew his stuff. So look for a Neurosurgeon who specializes in spinal deformities.

Lost and Tired

Tammymcgann KathyKohlBuehler thanks everyone. The thing with the Botox is that it takes several sessions, spaced apart by several months, before it is supposed to help. Lizze believes she has Ehlers-Danlos because when we had Elliott looked at for this, what we learned fit Lizze.  We need to get her evaluated for this.  I wonder if that would make a difference.

Lost and Tired

Tammymcgann I plan on doing just that.  This is something on my list of things to do.  We are going to be figuring some of this stuff out over the weekend and next week. Thank you for your persistence. 🙂

Tammymcgann

But I would URGE you to ask her Neurologist to order a “Standing MRI”.  What they do is they have you in an upright position.  Then they have you bend your head foreward and they take a picture.  Then they have you bend your head back and they take another picture.  This would indicate whether or not she has some sort of spinal deformity that wouldn’t be apparent in your typical MRI while you’re lying down.  PLEASE, if only to shut me up, PLEASE ask for this MRI.  And if her current Neurologist refuses to order it, yeah–move along and find her a new one.  But it doesn’t sound like the one she currently has is a bad doctor.  I think Lizze needs more specialized care than a Neurologist can provide, which is why, again, I BEG you to take her to a Neurosurgeon.

Tammymcgann

My friend with Ehlers-Danlos Hypermobility says she suffers from multiple different types of migraines–sometimes they’ll start at the base of her skull, others will start over her eyes.  She just received enough Botox for an entire cast of Real Housewives; in her shoulders, in her forehead.  She said that SOME of her migraines have been cured by the Botox–mainly, the ones that stem from the base of her skull.  So the Botox injections in her shoulders worked.  But the Botox to her forehead did absolutely NOTHING.  And she said it caused her eyes to look droopy.  I can kinda see what she means, but only because she pointed it out.  But it’s not something that anyone would notice otherwise.  So, hey, if insurance will cover the Botox–try it!  Maybe she’ll get at least SOME relief.

KathyKohlBuehler

Well, maybe if the botox worked, she would feel better, and be able to focus on some of the other stuff she has going on. Don.t be so sure it won’t work til she at least tries it.   Then find a new doctor, then….maybe things will start to turn around .

Tammymcgann

Has she seen a Neurosurgeon yet?

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