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Migraines & worsening symptoms
Hi, I'm 23 years old. I identify as male but biologically female. I am diagnosed with a migraine disorder (vestibular migraines) so I am used to having headaches, nausea, sensitivities, some fatigue. However, in the past few months, I've had a large amount of worsening symptoms.
What triggered me to compile all of these symptoms is when I was having an extreme amount of straining in my head for a few days. I was very uncomfortable and struggled to think. It was scary to me because whenever I tried to investigate the cause of it, I would get a severe headache. Unable to speak or open my eyes levels of pain. Every time I got the headaches, it caused me to forget whatever I just had figured out about the cause of it. So I wasn't able to talk about it or write it down without the severe headache and "memory loss" coming first.
To be transparent, I have Otherwise Specified Dissociative Disorder (Type 1b). I'm used to certain emotions, memories, etc not being possible for me to access in my own head because associated trauma is too intense for me, so I get emotionally disconnected and dissociate from it. This is not what that is. I've never had genuine pain while trying to figure out why I felt so strained by something. Dissociation and even some headache related symptoms are common for me because of my disorder, but it's grown more extreme and concerning.
Severity ranges from moderate to severe. Sometimes it's very severe and it interferes with my ability to sleep. It is never less than moderate, and I'd say most of my daily activities are limited by the symptoms.
Heres a comprehensive list of the symptoms:
- minor headaches
- severe headaches
- ice pick / thunderclap headache followed by panic attack (I think this is what happened? It only happened once, but it was one of the worst experiences I've had in a long time)
- brain fog
- strain in head
- light and sound sensitivity
- chronic and unpredictable pain: all over the body, most prominent places being in the legs, arms, jaw, back, and sides
- tingling and numbness: mostly in the legs and feet, arms and hands, and face
- fatigue
- weakness
- touble sleeping at night: mostly due to pain in jaw and legs
- nightmares and sleep paralysis
- drowsiness during the day
- nausea
- dissociation, derealization, and depersonalization
- depression
- constant diarrhea
- occasional stomach aches and pain in abdomen after eating
- short term memory loss
- moments of being stuck in a daze: aware of surroundings but unable to move eyes or head until I move another part of my body
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@lobotomy336
Welcome to Mayo Connect. Sounds like you're dealing with a lot, even the ID you chose indicates your frustration with living with your condition. Most members of Mayo Connect are not medical professionals and cannot diagnose you, but they can share their experience.
If you're interested in being evaluated at Mayo Clinic, you can request an appointment online here http://mayocl.in/1mtmR63. You will receive a call to schedule a time to speak with an appointment coordinator. You or your doctor will be given instructions on how to submit relevant medical records, test results, imaging studies, etc.
Do you care to share what your current providers have suggested for your symptoms?
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2 Reactions@roch Hi Laurie, thank you for the response. Sorry about the username, I didn't even think about it when I made it, haha. I cannot afford an appointment with any of my providers at the moment so I haven't been able to get suggestions for treating these symptoms or what they could be caused by. In terms of how I've been treated in the past, I take mostly medications. I take topiramate for migraines, but also sertraline, lurasidone, dextro-amphetamine, and occasional hydroxyzine. I also take tylenol daily for headaches or strain and pain in the the body. I took cyclobenzaprine in the past for a temporary heart issue caused by stress, and while I'm not prescribed it any more, I still take them every once in a while if I cannot relax my body enough to sleep.
For example of struggling to sleep, last night as I was falling asleep I believe I was having hypnic jerks. I kept spasming in my legs and my head the most, but sometimes it would be my whole body, every time I let myself relax. This was right after an extreme headache that started as jaw pain, so bad that I had to try to go to bed immediately.
I know this isn't exactly what you asked but I hope it gives a little more information. I appreciate your response a lot. I'll also add a name to my profile, I didn't realize you could do that. 🙂
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2 ReactionsHi Max,
I'm so sorry that you are having such terrible symptoms! I hope you can be seen by someone who understands the complexity of your situation soon. That must be very stressful to live with all these symptoms. If you could get to the Mayo Clinic they are the best!
Have you looked at the side effects of your medications and any vaccinations or treatments you may have had? That could possibly give you a clue to some of your issues. Also you mentioned brain fog. My husband had brain fog when he had lung cancer. We found after doing some research online that Gatorade helped brain fog. He tried it and the brain fog finally went away. He also drank a lot of water and that always helps your body. Drinking a lot of water also helps spasms in your legs.
One positive thing about your stiuation is that you are young. Only 23! We heal better when we are younger. I'm 79 and have noticed how I don't heal as well at this age as I did at age 23.
One thing that really helps is prayer. God helped me and my husband a lot when he had lung cancer. Just talk to God like he is your best friend and he is! After all, he made you and he can fix you! I'll say a prayer for you also.
Please keep us informed on how you are doing. I wish you the best.
PML
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3 Reactions@pml Hello! I'm sorry for the super late reply. This comment genuinely helped me so much. I've been drinking gatorade and it helps my mind and body a lot! The brain fogs and jerking have gone done since I've started that. Your encouragement really helps, and I appreciate you sharing your faith and prayers with me! It gives me lots of hope.
I also wanted to post an update to this thread. I reached out to a relative for help with getting appointments and it's been a life saver. I got to see my neurologist that I had already been seeing for my vestibular migraines and they were able to give me medicaton for migraines. I'm only taking preventative medication so having something for these new level of migraines helps a lot. I'm also getting an MRI soon and if nothing comes back from that, I'll be getting an EEG (both a 30 minute one and seperate a 72 hour one) to test for seizure activity, which is likely what's going on when I'm unable to move. I hope the results from the MRI clear things up though and that I get the help I need for this.
I did have a fall right after I saw my neurologist unfortunately. I fell down in the bathroom that night and was stuck for around 25 minutes, but it felt much longer. I was aware and awake the whole time, but I couldn't move my body. I couldn't even blink or look around with my eyes. Every once in a while I'd have about 15-30 seconds of being able to barely move where I would move my head slowly to look around the room, try to readjust myself so that I could eventually get up, and I would groan, but I don't quite remember why I was trying to make noise. I remember a part of me saying "What's taking so long? Just try harder and get it together, you're making this up" in my head the whole time I was unable to move. Eventually the groaning caught attention of my partner, who was resting at the time. She helped me up and feel better and comforted me.
Also not sure how this got moved to mental health and the title change? I know some of the symptoms are about my dissociative disorder but most of these are neurological and related to migraines / headaches / seizure. I'll see if I can update the post to move it back but I don't want to cause problems with the forums.
Hi Max!
I'm so glad the Gatorade helped get rid of your brain fog and made you feel better! It is really good for balancing your electrolytes which is important. I use Gatorade also whenever I'm not feeling like myself. It does help. You may hear others mention that it has too much sugar in it. There is nothing wrong with that. After all, God made sugar. I've consumed sugar and a lot of it for all of my 79 years and I'm in good health. My doctor said he didn't need to see me again for a year!
I'm glad you are seeing doctors and getting tests. Maybe they will figure out what treatment you need.
That's terrible that you fell and couldn't get up! How frightening! And you couldn't move either! That is scary. Be sure and tell your doctor that when you see him. I'm glad your friend was there to help you! That was a miracle!
I'm so glad that you liked the prayers and they made you feel good. God is there for you and always will be! He will get you well. Just have faith and it will happen. It states in the Bible to "Ask and it will be given to you." I've had a lot of prayers answered in my life especially taking care of my husband and my Mom when they were ill. God always comes through for us.
Keep in touch. I'd like to know how you are doing and if the doctors get things straightened out. I'll keep praying for you.
God Bless You,
PML