Weird thoughts/dreams and logic thinking
Hi I'm new to the forum
Long story short Ive had many diagnosis over the years started at 19 years of age I'm now 37 I was first diagnosed with belspalsey and then chronic migraine and then hemicrania continua migraines and I've also had a stroke my migraines have gotten worse and I've exhausted most medications so far from a ajovi pen to nasal sprays and nerve blocks and now currently on my 3rd lot of botox and I can't think straight and I'm having weird thoughts that I wouldn't ever of before and I'm wondering does anyone else have anything similar
Many thanks
James
Hi James. Welcome! We are so glad to have you with us and are grateful you are open to sharing your journey with us. Sounds like you have been through so much. A complicated intersection of demanding conditions colliding together with you at the center trying your best to learn about and manage them all. It's a lot on you.
As you outlined with some of the treatments for migraine that you've tried- medications can bring complications of their own. And, when you have multiple conditions, it can be more tricky to manage those side effects along with potential interactions that can occur between medications taken for one condition along with another- or a medication taken for one condition potentially worsening another existing condition.
Are you seeing a migraine specialist? Given all you are juggling, we would certainly encourage you to pursue evaluation and treatment with a migraine specialist if you aren't already doing so. These doctors receive specialized training in the complex neurological condition that is migraine. If you are interested, we can send you some links to referrals.
Have you taken a look at our resources on hermicrania continua? If you haven't yet- perhaps you'll find something that resonates or interests you: https://migraine.com/search?s=hemicrania.
We don't have much on Bell's Palsy- but I wanted to give you the links to what we do have- just to explore that intersection between these conditions: https://migraine.com/stories/previous-bells-palsy-undiagnosed-hemiplegic. And: https://migraine.com/forums/bells-palsey-type-symptom.
In terms of treatment, you mentioned that you've exhausted most options. You said you've tried Ajovy, nasal sprays, nerve blocks, and Botox. I know you've had migraine for decades now, so likely you've tried more treatments than those you've mentioned, but I did want to ensure that you were aware that there are over a hundred kinds of treatment options available for migraine: https://migraine.com/migraine-treatment. And even within the various types of treatments, there are many options. For instance, Ajovy is one option out of many kinds of drugs known as CGRPs. We are learning that when one of those doesn't work, you may find that another one is quite effective. It can be tiring to try new treatments, for sure- but I did want to let you know, there are many options out there.
Also- I personally have found (and I have been living with migraine for 50 years- 25 of them chronically) that because there is no cure for migraine, the goal is to find relief from symptoms. This often means coupling various treatments together. For me, that has meant finding a CGRP (in my case, something called Qulipta) and taking that in concert with Botox, plus another preventative called Topamax, along with another rescue in the Triptan family.
This leads to your overarching question (and thanks for your patience in getting here!) regarding the weird thoughts. So, yes - people in our community have reported experiencing a wide array of thoughts and feelings before, during, and after migraine attacks. Delirium, sadness, brain fog, confusion, and on. As I mentioned before, some medications we take can heighten these experiences. I'm not sure I've heard about Botox causing challenges with thinking, per se, but as I said, migraine can impact our thinking: https://migraine.com/living-migraine/aphasia-brain-fog.
I hope this information proves useful for you. We are absolutely here for you to provide information, compassion, and support anytime. Again, welcome to our community- we're so pleased you are here. Warmly - Holly (team member)thank your for your kind words and just talking to me not many people seem to understand or find it difficult to understand because they don't know what it's like
Yes I'm with a head specialist and I've had to give most of the medications up because of the stroke it went unspotted because of my age and at the time apparently they wasn't looking for that
I also have other symptoms I lose all my strength in my right side my arm and leg become weak and achy and the right side of my face also droops with almost every episode
Many thanksOf course- I wasn't thinking through the complexities of stroke and the limitations it places on medication options. I know that takes triptans out of the picture, for instance.
And yes, this is why it's wonderful you are with us. Our community is primarily comprised of people who are living with migraine. With that comes an inherent level of compassion and understanding that is so refreshing to encounter as the world mostly has the opposite (people who don't understand and even worse, judge the condition).
I'm glad you're working with a specialist. Some of what you describe, regarding face drooping and muscle weakness, sounds like Hemiplegic Migraine. Have you ever explored that with your doctor?
Again, so glad you're with us. Here for you- Holly (team member)
Yeah hemiplegic migraine has been mentioned before but apparently the severity and how often they are they given it that name instead
There's just so much in my head that I want to explain to family or friends and can never find the words or I overthink things
I did loose my speech too in 2024 for a few months I could get full words out even though I could talk and I knew what I wanted to say it would come out the way I wanted but sounded backwards to others if that makes sense
Many thanks for getting back to me
Thank you for joining the conversation and sharing your experience with us. You've been through so much, please know we're here for you!
I see you've been speaking withwho has given you wonderful support and information. A good support network is imperative when living with any health issues.
There are so many different types of migraine and headache disease - I believe over 200! Good to hear you are working with an expert as these doctors can have a huge impact in our care.
Looking forward to hearing more from you and I'm sending you wishes for a low pain day, Nancy Harris Bonk, team member
Thank you for your kind message
Yeah I do like my head specialist and I do feel bad half the time telling them or emailing them with changes or medication updates I feel like I come across rude sometimes or a pest there only doing there job
Hopefully explaining myself to others who suffer similar ways to myself then hopefully I'll be able to better explain it to those who ask and don't know like my parents and family and friends x
You're very welcome and I'm happy you found us. Good to hear you're being your own best advocate. I do understand what you're saying about feeling bad with all the emailing and I felt a similar way for a bit. Then realized our health care providers are there for us!
Nancy Harris Bonk, team member
I'm happy I found this place too
Yeah I do feel bad and I know they are there to help and they do there job
I just feel rude or like I'm having a pop or its there fault there's no magic wand
But I feel that way with alot of people and holding back on lots of subjects that are bothering me
Thank you once again for replying to me x
