Weird Episodes with Weirder Spells

It’s taken me over a week to get the courage to post this. I started having these symptoms 4 years before my rupture, but they were mild. My rupture was 7 years ago. The symptoms have been debilitating ever since. I’ve been to 4 neurologists, and a dozen other MDs. None of them have heard of anything like this. After MRIs, angiograms, EEGs, ENGs, ECGs the best they can come up with is migraine. Mostly what I’m looking for is anyone who has the same symptoms or knows of anyone who does. Kinda desperate:
Episodes
The episodes have been occurring every 3-4 weeks, lasting 7-10 days. A day or so before I start having spells, I begin to develop increasing anxiety and start feeling like I’m coming down with a virus. During the onset of the spells, I feel sick like I have a fever, but I never have one. I feel an itchy sensation deep in the bones and muscles of my arms, hands, legs, feet and pelvic area. My memory and attention span go on the blink. I vacillate from feeling anxious and downright creepy to just feeling beat down and hopeless. I cry a lot. I can’t talk myself down from it any more than I could talk myself sober while drunk. I avoid leaving the house or inviting people in because my mental state gets so bad, I can’t deal with people. Clonazepam eases the symptoms and sometimes stops the spells for a while. After the spells have run their course, I feel tired and depressed. A day or so later, I will usually see auras and get a headache that lasts for several days.
Spells
The spells last for about 3 minutes and are so bad during the first couple of days of the episode, I have to stop whatever I am doing and lie down until it passes. My head feels like it’s being sucked inside itself, like a vacuum. I feel myself being pulled into a trance-like state. I’m conscious, fully aware of where I am and what’s happening, but I feel like I’m dreaming. My thoughts are random and fleeting, changing rapidly. A warmth sets in and grows into an oppressive heat. I get a sensation that feels like goosebumps cascading all over my torso and buttocks. I’ll feel something in my abdomen that sort of feels like contractions, but not painful. As the spell wanes, I start feeling cold and begin to shiver. When it’s over, I will feel washed out for about ten minutes, and I usually have to go to the bathroom. The spells come every 1-2 hours during the first couple of days. The frequency and intensity fade as the episode progresses.

Thanks for taking the time to read this.
Lee

Should have added, I am a 57 year old female.
Lee

1 Like

Lee,

It sounds like we both had similar bleeds by the brainstem if your rupture was in the vertebral artery. In my case, it was vertebral harboring the PICA (VA-PICA). I do not have a medical background but based on your complaints, it sounds like you are having seizures as I have friends who suffer from seizures with some similar types of episodes (not exactly like your case though). There is misconception that people think of seizures just as motor convulsions. But, my friends do experience sensory episodes. Here is an article describing “Epilepsy and Sensory systems”

Also, seizures can affect mood/emotions. Here is a case study at UCSF for a person who experienced mood/emotional issues during a seizure. This video shows how the researchers at UCSF step by step diagnosis and treatment for this patient.

I think that Clonazepam is a anti-seizure medication.

If you have an advocate who can help you, I think that research hospitals is your best bet to find Neurologists and Neuroscientist who can help you in getting a correct diagnosis and treatment. I think that you mentioned in another post that you live in rural Ohio. I think that Cleveland Clinic is the nearest research hospital to you. I am sorry that I am not an expert. I am just very familiar with my issues.

Thank you for posting the video! Wow! A bit to absorb. Mohammed Shazam Hussein MD at Cleveland Clinic saved my life. Unfortunately I live 2 hours away and Akron/Cleveland is a bitch to drive through. I will talk to my therapist. She might have ideas. For the most part, all of the health care providers I have been to sort of rush me in and out and seem annoyed when I press them to think about my issues. It’s almost like they don’t want to have to work that hard. I imagine job burnout in the field of medicine is really high. I’m 57 and have been dealing with this and other exhausting family issues and I get tired easy. One day at a time. I’ll share this with my therapist. Thanks again.

Lee,

In a clinical setting, you just get 15 min with your physician. I completely understand your frustration as I went through the same thing until I got my correct diagnosis and treatment. Also, it is really difficult navigating through the sea of Neurologists and other experts. It must be more difficult for you as you live in a rural area where the options are limited as speciality physicians usually reside in major cities. In the video, the patient went through a slew of physicians until she found the right one who diagnosed her immediately. She was lucky that she went to UCSF which is the top Neurology dept in the US. Perhaps, your therapist can refer you to a Neurologist with a background on seizure, stroke and vascular disorders. Perhaps, Dr. Hussein’s office can refer you to a good Neurologist. I am not an expert on seizures by any means but my friends who suffer from it have somewhat similar emotional and sensory episodes.

I also encourage you to take a good journal. I kept a journal and notes. It was useful for my physicians as I could succinctly describe my issues in my 15 min consultation. It will especially helpful in recording the effect of the medication and side effects. Sites like Luminosity can also be helpful. You can take a memory test when you are normal and when you have an episode, then compare. Or a video recording during a normal state and during your episode. This way, you can see the difference in your state.

If you are not getting family support, perhaps you can find a friend, church member, volunteer organization who can be your advocate. It may be dangerous for you to navigate in an Urban area if you are having one of your episodes. I do not have family issues, but honestly, everything that I have done has been pretty much on my own. It has not been easy. Reach out to me anytime as I definitely relate to your frustration. I have one more medical mystery that I am dealing with but it took me 3 years to at least get 70% of my issues answered correctly and a treatment to get some of my life back.

Good luck and I hope that you get the help that you deserve.

Best

Thank you so much for your feedback! It’s giving me the courage to get out there and fight for what I need. I gave up about 3 years ago, got on disability and have been losing myself in DYI projects, yardwork, house work, hiking with my mutt and TV. I have a tidy house and have learned a lot about digital photo software programs. But lately I’ve been feeling this need to move forward. Overcoming the fear of being met with more apathy is tough, but you have been encouraging. You’ve helped a lot!