Lizze was at the neurologist today for her migraines. She almost always has a migraine. They don’t respond to medications and she is miserable all the time.
It has gotten to the point where the only left that they can do is Botox injections. Apparently, people have found relief from chronic migraines with Botox. Lizze isn’t excited about the idea but I think at this point, she dislikes the pain more than the needles involved.
This does come with risks. One of the side effects is migraines, which seems counterintuitive. The other is an extreme migraine when the Botox wears off.
They are putting a plan together and will likely follow up with the actual procedure at some point in the near future.
Have any of you ever had this done before? Did it help or make it worse?
Something else that was interesting was that her neurologist wants her worked up for Dysautonomia. Gavin’s doctors suggested that as well and I had forgotten all about it. Apparently, Dysautonomia has a strong genetic component. That would explain Lizze’s freakishly low blood pressure and why she gets dizzy when standing up.
We had thought it was a result of the migraines. However, it may be something else…. She should be able to get the diagnosis or evaluation at the same office she was at today. They had a doctor that specializes in autonomic disorders.
It may turn out to nothing but it would be a step in the right direction if we could find out what’s going on with her as well.
The reason this whole thing came up at the doctors today was because they can’t treat her tremors because her blood pressure is so low. That fot the conversation started and the pieces seem room fit together.
**Thanks for reading**
-Lost and Tired
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Hey Rob (and Lizzie)
Now that I've commented once I feel pulled in! 😉
Ok, so here's the deal – I suffer from Cluster Headaches which are different from Migraines in that they are more painful, but last a very short time (45 mins or so)
I go to a specialized headache center in NYC (neurologists are awful at treating headaches, seriously I went through a dozen before finding a headache center).
I get botox – I have gotten it for years, every 4 months and it's AMAZING. i get it in my forehead, temples, jaw, and the back of my neck and it works.
I would absolutely recommend it to Lizzie. The needles are NOTHING – the only ones that hurt a bit are the temples and jaw, but they are tiny, tiny needles.
Also, I have gotten an Occipital Nerve Block on occasion to 'break the cycle' – sometimes it works, sometimes it doesn't – but it's worth a try. This is a bigger needle to the back of the head, and hurts a bit more, but can be really worth it.
ALSO – this is key – has Lizzie ever tried Magnesium infusion or supplements. Infusion (obvi) can only take place at a doctors office, but I use MAgOx supplements and they help as well.
Also breathing 100% pure oxygen.
I am a headache expert guys – seriously. I've been healing with severe head pain since I was a teenager. And I've only recently been able to find the tools to manage it. If you want to chat more about it – feel free to email me… PS – I'm changing my handle from 'SortOfConcered' on your comments section! Just going by Sarah now… 😉
Read this today and thought of you all – don't know if it would actually help, but maybe something to learn about: http://abclocal.go.com/wpvi/story?section=news/sp… (Pain relief using smart phone technology)
Good luck to Lizzie on this, I know migraines are horrible; I suffered them for many years and they seemed to subside and be more tolerable once I was desensitized from my allergies – took a good 4.5 yrs of allergy shots, but it worked, so mine were more clearly allergy related and would escalate out of control. One of my sister in laws got the Botox injections for migraines years ago, and it worked for her. She also did some kind of infusions in recent years. Keep us pposted!
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I know this is a very serious and annoying feeling and migraine really cause me a lot of pain most especially in the evening. I know many can easily relate from this post of yours.
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I just recently read about a woman who got the Botox injections for migraines and it worked for her. (I wish I could recall where I read it at) It may be worth a try.
My sister in law get botox injections for her migraines. She has Dysautonomia and neurogenic cardio syncope. Her neck is stiff for a couple days but then it seems to help. It doesn't completely eliminate them but make them bearable. She does know when it is time to go for another time but they usually schedule them before it complete wears off. She also gets the nerves burned in her neck and that seems to help with the migraines.
wait….she also has really low blood pressure and gets dizzy easily? I have the same issues, I run 110 or 50 or 60 as a normal BP, and I get dizzy easily as well. I have my neuro appointment in June so we'll see about me. I hope she gets some relief , I know just how bad these things can be.
I have talked to Lizzie before and I can't remember if I asked her if she has tried acupuncture….It is helping me, I have or have had a lot of the same things going on with me as she does….food for thought!!!