Caught by Surprise - Botox et. al

General
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Yes, I know et. al is not proper English for this, but I thought I’d mix it up a bit. If you go back to last month, we had what I thought was a very helpful, honest discussion - about my neuro doc wanting to do Botox and the stuff I read from reputable sources on line how one of the rare but listed side effects is difficulty swallowing - and since I’m already dealing with only one useful vocal cord, that would be a big problem (aka feeding tube and breathing tube.) I’m not sure how to link back to a prior post - if one of our wonderful (seriously, they are awesome) moderators could link it and show me how to link to past posts, that would be great.

Link to previous Botox thread added by @DickD

Anyway, time for an update. After first telling him that we felt Botox was too risky, he then wanted me to meet with one of his NPs. (Nurse practitioners). She strongly recommended these new injectons - I think one of them is called Amovig? Because studies have shown “good” results (in other words, not great but good enough for the FDA) and virtually no side effects.

Back to my homegrown medical team (aka wife and daughter) and more research. We ended up deciding that we didn’t feel good about doing that because:
1, The data from the studies was only at most 2 years old.
2. There weren’t any test participants who were as screwed up as I am. :slight_smile: yes most days I can laugh or smile about it. Some days it’s all I can do to not start sobbing in front of my teenagers.

So, back to the doctor and we said, “No, we don’t want to try that because of (see above), instead we want to try propranolol.” He emailed me back and said, “okay, I’ll call in a prescription but I would also like to meet with you.”

The meeting was yesterday. A couple of things came out of it:

  • Propranolol usually takes 2 to 4 months after you get to the max dosage to see effects.
  • Due to the possible interactions between that and my albuterol inhaler (and my pulmonologist said they can definitely get a different inhaler, we are going to start at 60mg and rather than up it every 2 to four weeks, we’re going to go slower and up it every 6 to 8 weeks. I don’t remember if he said that he wants to “target” 120 mg or whether that’s the maximum. So, we’re on it and it will probably be 5 to 8 months until I can tell whether it works - which means I need to keep on pursuing non-traditional methods (see my previous post about headaches and ear plugs).
  • One thing that surprised me was that he basically threw his nurse practitioner under the bus by telling me that he would not recommend Amovig or the other two injectable drugs to anyone with an AVM. Why? Those are vaseo-restrictor medications so what they do is make your blood vessels smaller. If you’re anything like me, you probably have a significant amount of blood vessels that are plugged up with “super glue.” If this “squeezes” the blood vessels, it could theoretically push against the super glue and dislodge a chunk that could then float to somewhere else where you and I don’t want it to be. AND there haven’t been enough studies, if any, to follow what Amovig does with crazy AVMs like me (and most of us).

Yeah, I’m not liking that possibility but I felt like he finally had a better understanding of what a screwed up system I have.

He still wanted me to consider Botox and while it says there is a risk of swallowing being restricted, (that sounds so much nicer than, “can’t eat or breath because his throat is choked off”) he thinks it is a very very low risk. Why? Because most of my headaches either start with my ears or my forehead, and that’s a long ways from my neck. Well, I know I’m not a giraffe, but if I think of the distance from my ears to my throat, that’s not that long.

He ended up agreeing that because they list that as a rare but possible side effect, that means that someone somewhere in one of the botox for headache trials had that happen. If anyone has any idea figuring out how to get information on the case or cases that had that issue? We would love to know that to assess what it looked like. If you have any ideas, I’d love to know - message me.

So, we left it that I’m on propranolol, I’m going to watch blood pressure and heart rate (yeah for heart rate monitor watch for Christmas) and it will be probably 5 to 8 months, if ever, before we have to address the issue and look at Botox again.

And after writing and reading all of that, I know why my head hurt last night. :slight_smile:

Thank you all for the role you played in getting us to this point. I feel much better taking the slower and less risky of a route than I would jumping into one of those and end up doing #disastroussideeffects2.0.

I’ll keep you informed any time something happens with the propranolol, but after two days, no noticeable change…

Thank you all,

TJ

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Thanks for the update TJ, the battle continues. Certainly is very complex and seems like a lot of trial and error which is fairly common, these darn things are no two alike that’s for sure. I thought I’d just throw the thought out in respect to drug interactions a chat with a pharmacist may not be a bad idea. I’ve often (over)heard them talking with Dr.s on the phone and politely asking “what are you thinking?”. I’m a big ‘et al’ supporter! Its a lot easier than saying and all the other stuff too! Take Care, John.

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I’m surprised as well, since it’s only technically that amiovig is a vasocontrictor.

The med is to designed to block the calcitonin gene-related peptide (CGRP) receptor. The amount of CGRP may increase in the circulation during migraine attacks. CGRP is a peptide that works as a vasodilator and well as a pain-signaling molecule. So the medication would be expected to induce vasoconstriction or prevent vasodilation, and to play a role in modulating pain.

So yes, it works potentially as a contrictor – but only if you already have an abundance of CGRP in your body creating dilation! Which is a migraine symptom. And while yes, you have headaches, are you really sure you have migraines? Aren’t your headaches from AVM and treatment of AVM? Headaches and migraines are two different things. And while each can be equally bad, the treatments can be very different.

I, also, am concerned one of the new migraine treatment shots was suggested to you. Those have NOT been studied in people with AVM. Heck, they’ve just barely been studied in the targeted population of people with 8 or more MIGRAINE days a month. It’s been in human trials for two years and on the market for the population at large for almost six months. Which is not very long at all.

I wouldn’t think you were in the targeted population for this med, not with having AVM. I think you made the right decision to not go with that treatment and I think you need to keep a very careful eye on the medical professionals in that office, it sounds a little like they don’t know what to do with you so they’re throwing the newest treatments at you, wether or not they really apply.

I’ve had nuerologically complicated migraines for 30+ years, I’ll be happy to discuss migraine vs. headache vs. head pain vs. other head injuries causing headaches…

azurelle

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AZ - thanks for the input. I think we are dealing with exactly that - a doctor and staff who are used to putting round pegs in round holes. And I certainly am not round (ignores the opportunity to make a joke about carrying too much weight).

I’m going to try to find out info about botox and AVM people in their studies - or at least people who had swallowing issues. There had to be some because otherwise they wouldn’t list it as a potential problem.

I’ve been given conflicting opinions as to whether my headaches are what they called (not this doc, others) chronic migraines or whether they are “chronic traumatic brain injury headaches.” Apparently TBIs can cause up to 5 years worth of nasty headaches afterwords. If that’s true, then I have 4 years to go yet. Ugh…

The neurologist actually told me yesterday that he doesn’t see any trial for anything that I’d ever be invited to be a part of because I am so “special” (my term, not his).

Yeah, I am not going to agree to anything with them without first running it past my daughter, the DNP, and probably getting second or third opinions from the University of Michigan or from Mary Free Bed Rehabilitation hospital.

Thanks for the input - we’ve got probably 5 to 8 months of trying the propranolol before we have to wrestle with the issue again. And that’s assuming the propranolol doesn’t work, and I’m choosing to believe that it will reduce the pain enough that getting risky isn’t worth it.

Thanks again - and we’ll definitely keep in touch…

TJ

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TJ

To link to a previous thread, find the thread (e.g. Go to your profile and select the Activity tab or search for a phrase such as “Botox” using the magnifying glass). View the post you want to link.

Then copy the https address or select the link icon that shows under the post.

Then create your new thread or go to the thread you want to contribute to. Start a post, and in that post, either paste the http info or use the link icon above the edit window.

Hope that helps. You knew it would be me :wink:

Dick

p.s. I’ve done it for you above.

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John (Hey, that’s what the J in TJ is for too - I like that name),

We haven’t actually talked to a pharmacist about it - but I believe my daughter did reach out to one she knows while she was researching her Dad’s messed up head.

You know, the biggest complaint I think I’d have right now about our health care in Michigan is that they don’t have things set up where there is one person (other than me - preferrably a medical person) who can coordinate all of this and make sure everyone is on the same page - or at least in the same book…

Now that I say that, I think about 6 months into this mess, I had a phone discussion with a pharmacist who is on staff for our insurance company and we went over all of the meds that I was taking and talked at lenght about the good, the bad and the possible mix. At that point, I had just started topamax and I haven’t changed any meds since - except for weaning off topamax and now starting propranolol.

Thanks again,

TJ

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Dick,

That does, yes I did. I almost said, “Hey Dick, can…” but I thought I’d be a little more polite…

TJ

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Hey TJ,
I think you are being very methodical in analysing the use of all of the suggested medications and for that you NEED to be praised/congratulated. Many people will follow through with medically recommended options with very little forethought of the side effects, of which there can be many, simply because the dr recommended it. I have been used as (what I call) a ‘pharma guinea pig’ ie ‘Let’s try this… …ohh that didn’t work, then let’s try this instead…’ and although the side effects were not life threatening, some were nothing short of bloody nasty. My theory in trying the numerous meds was ‘Well, something might work…’ and ‘At least they cannot say that I haven’t tried such meds…’ But none of the meds were MY key.

Az makes a VERY good point “…are you really sure you have migraines? Aren’t your headaches from AVM and treatment of AVM? Headaches and migraines are two different things. And while each can be equally bad, the treatments can be very different.” There is a very flexible/jello like definition between headache and migraine. Headache is a very common ailment. A niggle in the temple can be considered a headache. But then so can what I define as an explosion of pain behind my eyeballs. Are they the same? NO!!! nowhere near the same. Some have the idea that a migraine is merely a very bad headache. Some Dr’s say a migraine is caused by blood flow within the brain, some say it’s muscle tension within the scalp and for suffers who do not have neurologically complicated symptoms this maybe so. For them Botox maybe that miracle they have been searching for as it can release that muscle tension. But for those of us with ‘neurological complications’ it is a bit more complicated than that. Trying to explain this to the layperson (and some dr’s) can be near on impossible.

I have had dr’s tell me (Rather forcefully at times) that the brain itself has no pain receptors so it’s not ‘brain pain’, but the meninges or the layers surrounding the brain do have pain receptors and any intracranial disturbance can irritate them. Botox may not have any beneficial effect on these particular receptors. Again, as Az lists them “…migraine vs. headache vs. head pain vs. other head injuries causing headaches…” can all have differing origins and differing types of pain. Calling them all ‘headaches’ is VERY generic as the pain can vary MASSIVELY.

TJ, you state “…Apparently TBIs can cause up to 5 years worth of nasty headaches afterwords…” from personal experience I’d have to add ‘…if you are lucky…’ as those ‘nasty headaches’ can last even longer than 5yrs for some.

Merl from the Moderator Support Team

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Merl,

Thank you for your kind words and support. Thank you doesn’t do justice to explaining how much you guys (in a non gender specific way) mean to me. It is so valuable to have people like me (or at least people that understand people like me) on my side.

And yes, I’m aware that the 5 years is if you’re lucky. Next Wednesday is the anniversary of when this AVM thing “came up and bit me in the ass.” (That’s an actual quote from my therapist. I like him.)

We were not emotional and mentally prepared for what happened a year ago. We (my wife, daughter and I) have all said that we will not go into anything again without being prepared and knowing what could happen.

This is the third time “something rare” happened. I need to make sure it’s the last time - even if that means learning to live with things I don’t want to live with.

I need to be honest with myself. We’re at a year and have seen no significant (if any) change in the last 6 months. Have any of you seen any significant improvement in your symptoms/side effects after 12 months?

Anyone? Nope, didn’t expect so.

A strong therapist, a wonderful wife and the Good Lord are on my side as I attempt to pursue but also adjust to where things are at.

Cheers to you all and if my daughter hadn’t said that alcohol and the drugs I’m taking shouldn’t be combined, I would raise a glass to my window into your world.

Oh and yes, I’ve not been able to find a doctor yet who has definitively said they are migraines. I’ve had a couple of doctors say that "in many ways, they act more like chronic TBI induced headaches. Still trying to find someone who is willing to say, “Tom has a controlled brain injury and it causes vision problems, hearing problems, light and noise sensitivity, a paralyzed vocal cord and throat, speaking and swallowing difficulties, diminished lung capacity on the left side, tremors and weakness in his left shoulder and arm and constant headaches.”

A number of docs will say parts of that, but none of them will say it all yet.

And so onward we press, because we have no other choice.

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I think the bit they can’t quite bring themselves to say is “controlled”?! :grin:

At the end of the day, I think you are a great example of a walking miracle, so do try to remind yourself that you’ve gone through a hell of a lot and much of you still works.

I know this is not much comfort but it’s what I can think of today.

Very best wishes always,

Richard

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Dick, Thank you. That is a big comfort, really.

I stopped by my son’s high school to pick him up - got talking with the dean of students. He asked how I was doing - cuz he had heard I was “ill” earlier. I told him I would e-mail him the whole story.

So I did. The next time I saw him, he came up, gave me a great big hug and said, “Tom, the fact that you are standing here is a testimony to the Grace of God and your own personal integrity and willingness to fight for it.”

I just hope that Social Security sees things the same way and actually approve the disability appeal.

And onward we go, we have no other option.

TJ

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Now, tell me, who the hell on earth would be? None of us could ever plan for “THIS”. None of us would ever WANT to plan for this. Its not until the reality of it all hits home that we realise just how much of an ‘ouch’, both emotionally and physically, this reality actually is and not just for the sufferer but everybody around them too.
As I’ve said before, even in working in the disability sector I didn’t fully comprehend the enormity of this reality. Sure I had some information, probably more then most, but then for it to actually impact ME… …ohh how little I knew. OUCH.

I don’t know that I would call it ‘fortunate enough’, those are the wrong words, but my wife’s twin sister had a glioblastoma, a nasty F$#@%*& brain cancer and we cared for her within the family home and we saw her agonisingly slow decline and loss of ability. From this we put some things in place so that, as best we could, we covered some of the ‘what if’s’ for ourselves. Wills, DNR orders, FULL ‘MEDICAL’ power of attorney, documented wishes etc so that if we were to ever be in that position we had some control. (I say “FULL ‘MEDICAL’ power of attorney” because in just having ‘power of attorney’ some medicos can say ‘Ohh it is POA, but that doesn’t include medical’ and they can over rule the POA’s wishes. Stating ‘medical’ covers it all. PLEASE BE AWARE OF THIS. They can sustain life when there’s no life to be had, just prolonging the agony for all).
As for a Dr who will say it all, I too had a problem with this. Each seems to have their own opinion and trying to obtain a concise diagnosis has been excruciating. But the dr from the insurance company, who I presumed would be the least likely to agree and the most likely to question symptoms/treatments/outcomes turned out to be the most straight forward. He stated “In technical terms… …you’re screwed” it was a huge shock 1)For him to agree and 2)For him to be so blunt. I was using a lawyer to deal with the insurer and once the claim was approved I had the lawyer obtain a copy of the Dr’s report. I now use this report as part of my supporting documentation and guard the report with my life. I have printed copies and digital copies stored on external devices so that the documentation is safe.
P.S. Happy Birthday old fella, but then I’m sure you kids will remind you of the ‘Old’ bit :smile:

Merl from the Moderator Support Team

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Merl,

Well said, thank you.

More later - but my 17 year old took great joy in reminding me that now I was as old as mom - even though my wife is actually only 32 days older than I am.

TJ

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@TJ127 I am so glad you did not try the new Amovig - I have gotten migraines for almost 30 years and they got worse after all this AVM stuff - I also have a genetic disorder Ehler Danlos and we are more prone to them - so many of my fellow EDs people have tried this new shot and a few of them are not doing well turns out it works with balance part of our brains and can leave with a nasty vertigo for months!
If you have ever had vertigo you know its not darn picnic. Apparently this stuff stays in your system for a few months even after one shot.
No thank you.
My pain neuro kept trying to push it on me and I was just getting over an allergic reaction to another shot they had just given me…I told her nothing new in my body and then came home to read two people with the vertigo reactions!

Go with your gut is my motto always! It has always worked for me.
We are not normally and have to be extra careful.

So glad you did not get it!

Hugs
Angela

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Yikes, thanks for sharing that. I have had and am still dealing with vestibular issues. I describe mine as the “cruise ship wobblies.” You know the feeling - when a cruise ship is rolling because of waves. It’s gotten a lot better but I don’t think I could pass the heel toe walk that police give someone who they suspect has been drinking…

Never a dull moment, eh?

TJ

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@TJ127 I think you definitely went with the right decision. We know our bodies -
and just so you know we do not have to pass the heel toe walk- You just tell them you have a medical condition and my cousin is a police woman and I worried about this and I still fall down and could not pass that test either and she told me - just tell them you had a stroke which is true ( not that they would know what a DAVF ) is and you cant do that test and I guess there is something else they can do.

At a recent autonomic neuro test the tech was asking me to move over as I was going to fall off the table…I said sorry I have a problem and he actually told me the medical word for which I can spell but still not say correctly proprioception. I have had all my life due to Ehlers Danlos. But know it got worse after all this.

Angela

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I have a good friend whose 6 months older than me and I have to remind him he’s REAL OLD!!! Anybody older than me is OLD :rofl:
He reminds me “You’re only as old as the person ya feel” My wife is 24yrs older than me and he reckons that makes me ancient :smirk:

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My brother likes to say, “I might have to grow old, but I don’t have to grow up.” He is the executive director of a youth camp, so essentially he plays games with kids in the woods for a living… :slight_smile:

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… and gets paid for it. Hmmm, maybe we’re going about life the wrong way.

Though it does depend on the kids :rofl: