Question - caught by surprise

General
1

Hey all,

Quick update and then a question - waited for 4 months for an appt with the headache specialist in the neurology area about my headaches. They truly are all day, every day and very nasty. They vary in strength but they are always there.

Doc said, Step 1, let’s stick with 75 mg of amitryptiline and switch from 50 mg Topamax morning and evening to 100 mg of Topamax in the evening. (Supposedly that helps with side effects and can help the drugs work better.). If I think really hard I might be able to come up with some minute differences, but virtually nothing has changed.

Step #2. “Has anyone talked to you about Botox injections?” No. Explains them somewhat briefly and said, "let’s try to see if we can get your insurance to cover them and see where it goes from there.

Step #3 Doctor’s office called today - first appt. is scheduled for January 22.

I have to be honest here, I’m kind of freaking out. The last time a doctor injected anything in my body, it cost me half of my hearing, half of voice, my career and I am 36 days short of a year since the last day that I can say I actually felt good.

Tell me what you know about Botox. If you don’t want to post it here, message me. I want to get rid of these headaches but I’m scared of trading the pain I know for something worse if this goes wrong.

Help a guy out and shoot straight with me.

Please,

TJ

P.S. Fun thing to deal with on a family vacation too. Yippe!

2

Hey TJ,
I have gone through the Botox route, you ask me to shoot straight, now that must be a joke because I couldn’t hit a concrete wall from 10ft with a damn shotgun, so it’d be best not to use the gun analogy around me lol. I was wondering if I should post this here or not, or just private message you, but then thought others may want to know too. But I promise I will not candy coat my experiences. So here it is
.
Botox was professed to me to be the wonder drug for headaches and for some I’m sure it is. I am not one of them. For some people their headaches may be a result of tension, primarily muscle tension affecting the neck and shoulders. Botox is used to prevent such tension.

OK, so here a bit of the science behind Botox (as I know it).
Botox is produced from bacterium Clostridium botulinum which is a natural bacteria which is inactive, non-toxic and is a neurotoxin. It prevents the release of the neurotransmitter acetylcholine acting on the muscles in the region it is injected. The bacteria botulinum causes botulism, but only in large strength when inhaled and not injected. Botox is given in very small dosages, by intramuscular injection.

OK, so that’s the science bit. Here’s my personal experience:-
Some women get this stuff injected into their face for cosmetic purposes, so I thought small pin prick, small injection and all ok. But what I wasn’t told is that many women have a small local anaesthetic prior, because this stuff stings. I’m not sure about how it’s administered in the U.S but here in Oz, when used as a therapeutic medication no anaesthetic is provided and for me it didn’t just sting a little, it STUNG LIKE HELL (I couldn’t believe some woman get this stuff shot into their faces). I went into the appointment with a ‘normal’ headache, but left in F#@KING agony with a headache from HELL. For my first appointment I had approx. 40 shots in my face, forehead, neck and shoulders and this was repeated every 8weeks. I did not receive any great/noticeable benefit which was frustrating I can assure you. I would have put up with the agony and recovery if I’d seen a benefit. And because I have previously rejected suggested treatments and with this being held against me I persevered for 24weeks, 3 treatments, at which point my wife put her foot down and said “No more”.

The explanation that was given to me by the administering neuro was that for some headache patients the pain comes from muscle tension, so by relaxing the tension their headaches are reduced. My pain is not from muscle tension.

There is the argument (which was put to me rather forcefully I might add) that the brain itself has no direct nerves and therefore cannot feel direct pain. Me, being me, got quite forceful back informing the damn dr I did not care what his 'F’ing theory was, I am having mind numbing, nauseating pain, botox or no damn botox. He then had the gall to tell me I just had a low tolerance to pain. To which I told him No I have a low tolerance to know-it-all dr’s. Suffice to say I am no longer his patient. Thank god. Arrogance and ignorance are 2 things that don’t mix, some dr’s have an excess of both.

TJ, I am not saying this to frighten you, concern you or dissuade you from having the treatment, in fact, not at all. And as I say for some it can be the miracle they have been searching for, I just wish I was one of them. If it is your ‘key’ then what can I say… …you lucky so-n-so, but it did not work for me. I have had another explanation by another neuro as to why my continual headaches occur. Outside of the brain matter there is a layer called the meninges between the skull and the brain. This layer contains nerves and pain receptors. With each surgery I have undergone this layer has been damaged, damaged and damaged some more and this ‘may’ (or may not) be the cause and source of my pain. Nobody knows for sure.

So, there you go, that’s my ‘straight shooting’ for you (I hope I haven’t shot my own foot lol). Maybe I’m just in that percentile that it doesn’t work for, which is my curse. My best advise is to go at it with an open mind and see what happens, it may be the key you are hunting for and to turn it down without attempting it would only be disadvantaging yourself, so don’t be doing that. Give it a go. You might be onto a winner.

Merl from the Moderator Support Team

3

Coming at this from someone who has had chronic, nuerologically complicated migraines for 30+ years…

I want to stress what Merl mentioned in the middle of his excellent explaination:

BOTOX IS FOR TENSION HEADACHES AND HEADACHES CAUSED BY MUSCLE ISSUES/TRAUMA

An example of muscle issue headache would be constant headache from whiplash or concusion (because concusion typically has secondary injuries to the neck muscles). Muscle relaxers often help with these headaches.

An example of tension headache is a headache that often causes a stiff neck as part of the issue, often it’s a “band” of headache around the head.

Botox is not for (for lack of a better term) “traditional” migraines. If anti-seizure meds help the headache odds are very good the migraine is electrical-based and chemically-based in the brain. Since Botox works on muscle movement it will not help this kind of migraine.

I suggest carefully doing your research and try to narrow down what type of headache/migraine you’re dealing with before you mess around with Botox.

First, it’s PAINFUL to be done, I have a friend with whiplash syndrome. She gets Botox every 90 days and cries the entire time it hurts so badly (30 some injections) but within 72 hours she gets enough relief to continue the treatment. But she has whiplash injuries, her doctor keeps saying migraine but that’s not what it is.

Second, Botox basically freezes your muscles and this can travel to muscles/areas that were not involved in the oringal treatment days and even weeks after treatment. In rare cases it impacts your ability to swallow. I suggest you research side effects and decide if the possible benefit is worth the possible risk.

I’m wondering how long you’ve had a headache. I assume you had brain surgery? How long ago? Are you still healing from that? Remember, it can be a year before you’re really clear from a surgery. If this did all start after surgery, have you tried daily anti-inflammatories? You’ve had trauma to the head, surgery causes swelling, maybe that would help?

What else have you tried for the headache? You only mention two meds, I can think of a dozen more off the top of my head (pun intended)!

azurelle

4

Merl,

I like you. I really really like you. You ever get anywhere near Michigan and we need to meet up so I can buy you the cold beverage of your choice.

Thanks and hats off…

TJ

5

AZ,

Thanks, you’ve given me some good questions/research group to pursue. I haven’t actually had brain surgery. I had an Embolization that went up into the brain and thus all of the problems.

It was January 30, 2018 that 30 screws and a whole bunch of super glue messed up my life.

I think I will be going back to the neurologist and asking more questions about whether there are other options we should try first. Yes, so far, Amitryptyline and Topamax are the only ones we’ve tried so far yet.

Your comment about Botox causing troubles swallowing gave me the chills - I only have one vocal cord that works and one half of my tongue that works thanks to this AVM thing - so swallowing already is an issue.

I will probably also talk to the doctors at the Univeristy of Michigan who have been excellent in 2nd opinions and getting their thoughts on the proper order to pursue steps to determine what to do about the headaches.

The last time I was in with the neuro Doctor, he said he didn’t think they sounded like a typical migraines, but more like chronic post traumatic brain injury headaches. They don’t seem to me to be “stress” headaches - unless it’s stress from noise, busyness, crowds, etc.

Thanks for all the input, please any more thoughts, keep them coming.

TJ

6

Hey TJ,
" …I haven’t actually had brain surgery. I had an Embolization that went up into the brain…"
Sorry TJ but that is still brain surgery, it maybe intravascular and a minimally invasive procedure, but it is still considered brain surgery. The placement of glue, coils etc alters the blood flow within the brain. Our bodies develop these vessels as we develop within our mother’s wombs, so to then have the natural flow changed MUST have an effect.
Azurelle is correct in that there are a number of differing types of medications that ‘could’ assist. A few I have been trialled on are heart meds, epilepsy meds and psych meds. Each of these have numerous differing concoctions. For example with heart meds there can be thinners, there can be statins for cholesterol and meds to assist in regulating heart beat. The same thing with epilepsy and psych meds, they can use meds to regulate electrical signals to hormones and everything in between. It really can be a case of mix’n’match to what works best for each individual. I considered myself as being used as “a pharmaceutical guinea pig”. For me none of them worked but the medicos can’t say I haven’t tried every suggestion that has been put forward. As I’ve stated before “…If someone suggested facing north, standing on one leg, singing the national anthem would work, I’d do it…”. I never rule anything out until I have, a the very least, trialled it. Someone might just have the key and I want it !!!

P.S. I never thought I’d end up in Europe, but have been to the UK twice in the last 2 years. So I’m not going to say I’ll never travel to the U.S., you might just have to buy me that cold beverage if I do. lol lol lol

P.P.S. I now wear a hat. So No hats off, cos then you’ll see all the holes in my head. lol

Merl from the Moderator Support Team

7

As always, I’m enjoying the love.

@Geo might be interested in this conversation, too.

8

No, Merl - see, I’d tip my hat to you…

And if you get back to anywhere within the US within 3 hours of western Michigan, I’ll meet you, just tell me when and where.

1 Like
9

@TJ127
Hello TJ and Happy New Year
I have been getting migraines since I was 22. My migraines got worse after my stroke CVST, then after my AVM angio/embolism.
I was afraid of Botox but I did let my pain neuro do botox and have been getting botox for over 7 years every 3 months. It wears off after 10 weeks.
She started about 2 years ago going off script where my actual pain is where my stroke pain is and it takes it down 1 notch I would say.
I do not let her do any botox in my neck at all.
I do it sitting up -
The day of and the day after I dont do anything
I find being in the sun hurts the day of botox and the day after.

Here is a great article I found recently regarding botox and headaches
https://www.nyheadache.com/blog/category/botox/

also usually the first round of botox shots you wont for some reason see much results but the second you will.

You might ask about occipital shots with liodocaine and ropivacaine to help numb your nerves in your head if that is where your pain is - and getting them on a monthly basis-
This has helped a few people I know-

Angela

10

So, I’m sure none of them have been read yet because what doctors are reading e-mails on New Years Eve, but this morning, I e-mailed my neurologist and said that based on what I read online (Mayo Clinic, National Institutes of Health and Johns Hopkins) all said that a rare but possible side effect of Botox is swelling and paralysis of the throat and difficulty swallowing. Given that I already have problems with that, that scares me. So I asked me to move from what we’re currently doing to Plan B, C, D, E, and F before coming back to Botox as Plan G.

I then e-mailed the Otolaryngology specialists at U of Michigan who have been my 2nd opinions and a big help and asked them to weigh in on the risks of Botox and the potential of nerve damage or swallow/throat damage in attempt to get rid of the headaches. If that’s an issue, I want to get to the bottom of the barrel, totally out of other options before I take on this risk, if this is indeed the risk that it sounds like it is…

I’ll keep you all informed. Thanks so much for the help!

TJ

1 Like
11

AVM Gamma Knife 9/14/18. Still light and sound sensitive and non stop ringing in my ears. But I refuse Botox! Going for head pain therapy at Cleveland Clinic, starts on tues. Good luck & blessings.