I haven’t found others here who have had my issues. I know we’re all different, but here’s my story as succinctly as I can make it.
About 7 years ago I started to get short bouts of vertigo and didn’t worry much because the were short and infrequent. Late 2017 I was off my BP med for about 6-7 weeks mostly because I just didn’t make it a priority to get it refilled - stupid I know. Well, one night I woke up changed position and was hit with a strong wave of vertigo that lasted about 40 minutes. It scared me, but I seemed to be ok for a few days and then started to feel off balance. I went to a clinic and my BP was high (@ 180/100) and he put me back on my BP medication. Later that day, I felt tingly in my thumbs and toes, a shaky feeling even though I wasn’t actually shaking, off balance, and my BP was still up. Went to the ER. They ran many tests including a CT scan and found my annie. It was 3.5mm, unruptured, and coiled the day after Christmas. Felt pretty much back to normal after a week and was finishing 2 graduate school courses when I felt the same symptoms that sent me to the ER originally - off balance, increased BP, shaky feeling, tingly thumbs and toes.
My neurosurgeon said I should be fine and gave me a few meds for my symptoms. Felt better again shortly and did some weight lifting and light jogging/walking last week followed by 2 games (12 minutes) of squash the next day. Since then all the symptoms have returned and I’ve been in bed for the past 5 days and, unless I’m lying down, I feel terrible. Also, hot baths seem to be the only thing that stops my shaky feelings for a while.
I probably did too much too soon, but now I feel worse than the other episodes I had. Saw 3 ENT docs and all of them say I don’t have BPPV. 2 of the meds I’ve been given to help are Dramamine and Valium. Anyone with a similar experience? Any suggestions?
To answer your question, where is the location of your annie? I suffer from vertigo, balance (much improved) and high BP. In my case, the cause is a minor stroke in the brain stem. I had an annie in the VA-PICA which ruptured. I have a lot of information on vertigo/dizziness but it is very relevant to my issue. My diagnosis is Central Vestibulopathy/Brainstem Vertigo.
Thanks for responding so quickly 2Fight. I was told my annie is in the center of my brain. I saw a new neurologist yesterday, as my neurosurgeon seems more focused on just surgery, and meant to ask him specifically where it was. Unfortunately, I brought it up once, he mentioned something else, and I didn’t remember to bring it up again. I’m an American living and working in South Korea and sometimes communication is an issue as my Korean isn’t as good as it should be. however, I will find out next week during my follow up.
He did run some sort of sonogram test to check blood flow in my neck and head and said that was fine. They then strapped me to a bed and measured my BP at different intervals and at different degrees of angle. My BP was high in every measurement, but I believe being out and about while enduring my discomforting symptoms and my “white coat” (was told docs use this description as many people experience elevated BP in doctors’ offices) elevation of already high BP, plus the fact that my right nostril was blocked making breathing difficult (I usually take Otrivin antihistamine spray several times a day), didn’t help my BP levels.
His conclusions were, “no orthostatic hypotension and no postural orthostatic tachycardia syndrome.” He gave me Indenol ,a beta blocker, and Dexibuprofen, a safer form of Ibuprofen to help with lightheadedness. I took them for the first time yesterday afternoon and they did help with the shaky feelings and the resulting increase in anxiety and a bit with lightheadedness.
I wish I knew exactly where my annie is and feel silly that I don’t. I guess I thought all would be fine after coiling and so it wasn’t something to be overly concerned about - at least that’s how my neurosurgeon made it seem. My Korean wife called the hospital to ask specifically where it is, but they are swamped as the 4 day Chinese New Year holiday begins tonight and put her on hold forever. Will have to get back to you about that next week.
Thanks for any and all help 2Fight, and anyone else who has something to add.
After my surgery for ruptured annie, I started to develop a host of neurological issues. My NeuroSurgeon and Neurologist scratched their heads as MRI/CT scan did not show evidence of stroke and these types of issues involve a person with a major stroke or major TBI. What was helpful in this follow up check up was that the Neuro-Surgeon described that there are many different forms of dizziness. In my case, it was vertigo (a spinning sensation) which would last a few seconds. But there are many other forms of dizziness (lightheadedness, imbalance, faintness). In subsequent visits to numerous specialist, it was found that I had a minor stroke (infarct) in the brainstem affecting both my vestibular (inner ear) and ocular (eye movements). It was close to the location of the bleed and annie. For this reason, I was asking about the location of the annie. In my case, my issues really makes sense why I had these issues.
I found this article helpful in my case. This article also describes different forms of dizziness.
My suggestion is getting your medical records (MRI, etc) as well as the Neuro-Surgeon notes which will tell the exact location of the annie. I also suggest that you get a consultation from a Neurologist since you are experiencing “shaky feeling” along with imbalance. If you were diagnosed for a vestibular issue, I have a lot to share. However, if you are experiencing a shaky feeling, it may be something else. Good luck. BTW, having a copy of all your medical records is really important especially if you plan to return to the States and still have your neurological issues. Best of luck to you as I also suffer from high BP and dizziness.
Thanks again 2Fight. I will get my medical records after the holiday here and lock down where my annie is. Sorry I didn’t respond sooner, but my in-laws were here and we were doing family stuff.
I read somewhere else in this community about annie sufferers having issues when the weather changes. I was feeling ok enough to take my kids out for some exercise on a sunny, but freezing day temp wise recently. Shortly after getting outside, my off balance/lightheadedness issues kicked in. I endured the time outside because my kids needed the exercise, but was glad to get home where, once I was warm again, these problems subsided. Is this common?
Thanks again 2Fight. I really appreciate your input and I will read that article this evening.