Other Symptoms Showing Up After Your AVM Has Supposedly Been "Fixed"?

Maybe it’s just me…

It’s been the better part of 4 years since I have my craniotomy. I was on dilantin both prior to the surgery as well as a couple of months afterward. I was ofd of Dilantin for a couple of months, then had a Grand Mal and was placed on Keppra, which I have been on ever since. In the time since my surgery, I have come down with a mild case of claustophobia, specifically when it comes to MRI machines and being held down by people, blankets, heavy clothes, or anything that restricts my movement. Obviously claustrophobia is a psychological thing that is most likely based on my numerous bouts with MRI machines and being held down by a handful of medics and police officers during my seizure, and for the most part, I can handle it just fine. But along with this new found clautrophobic feeling, my blood pressure has increased dramatically andmy cholesterol levels have also increased over the last few years.

Granted, I am almost 32, which means I am not a teenager anymore and things like this will start keeping up on you when you least expect it, but it seems rather abrupt and it also seems to line up pretty close with all of the various medications that I have been prescribed over the years. My doctor (neurologist) has me on keppra for my seizures (fair enough), and proprnolol for headaches (also understandable), but my GP has recently stated that he wants to do something about my blood pressure and my cholestrol level. As I mentioned, I have developed a case of “white coat syndrome” when I go to see my doctors, and along with it comes an increase in blood pressure every time I enter a medical building. As a result, my BP is always high when the doctor checks it. I tell him that it was not nearly as high 15 minutes before I came in the building and he refuses to beleive me. So what does he do? He bumps up my propranolol dosage from 60mg to 120mg. Likewise, my cholestrol level is 147 LDL and 40 HDL. he says he wants see my numbers at a minimum of 50 for the HDL and no higher than 100 for the LDL. He says I should be able to increse the HDL jut through my diet, but doesn’t feel I can drop my LDL by 40 points by myself, so he prescribes me some cholestrol meds.

So here’s the question that I am ultimately getting to… Has anyone here found themself in a similar situation? Namely, the medications you are on for your AVM symptoms cause you to have side-effects that require a new round of medications to treat them and it starts a whole snowball effect where you cannot simply stop taking a certain medication because the other meds have jacked up your system?

I would LOVE to get rid of all of these medications. I know that I will more or less be stuck taking the keppra indefinitely unless I want to risk having seizures, but I would just as soon be done with the medication that I was originally taking to reduce my headaches but am now taking to control my blood pressure, would just as soon be done with the cholestrol medication because my cholestrol is not THAT bad and I’d probably be in better shape if I was not taking the blood pressure medication which makes it tough to work-out… See where I’m going with this?

Any thoughts?

Goodness I can see why you would want to get off of the meds,some times it seems we all go around and around in circles to solve so many things.I can’t help much with any of this,but just wanted to touch base and let ya know that someone was thinking of you…Is your BP always up,not just when you see the doctor??? I can totally understand the feeling of being stuck in the machines and people holding ya down.Ha I don’t even have anything to blame it on,but I have learned that facing that fear helps to some degree.Anyways take care…Pat

Hi Jake, I have been claustrophobic all of my life. I was suppose to get an MRI many years ago to check my jaw. I got as far as my nose and I jumped up and screamed. The nurses and doctors were so mad, they were not worried about me at all. All they kept talking about is that I broke there expensive machine. LOL LOL
I will never get another MRI without some kind of sedation. I don’t know if my claustrophobia has something to do with my avm in general or what, but I know it’s bad. I can’t be held down either. My brother and my sister locked me in a closet when I was 4 years old, my Mom had to use hammer to get me out. That’s probably the reason for my claustrophobia LOL LOL.
I haven’t had my surgery yet, so I don’t know what happens after.
If you haven’t already done so, check the side affects of the medicine and bring proof to the doctor if the medicine has side effects that you are experiencing.
If it is mental try some breathing techniques or some kind of relaxation technique before you go to the doctors. You are still young so age is probably not a factor with your symptoms. Heredity does play a major role in what happens. I am 50 and my cholesterol is great, as of now I’m on one medicine for blood pressure. Both of my parents had high blood pressure though. Ripley’s believe it or not, they both had brain surgery too, both had tumors, two different types. My Moms was cancerous, she is paralyzed now because of a stroke, my father has passed on. They both did fine after surgery for awhile, it took a long time though. Hope you solve your issues fast.

Peace,
Ameenah

Peace,
Ameenah

TWO THINGS THAT HAVE WORKED FOR ME ARE BRISK WALKING AND YOGA, I AM A STRONG PROPONENT OF THE HEALING AND RESTORATIVE EFFECTS OF BOTH, NO MEDICATION WHATSOEVER, START OUT SLOWLY AND GRADUALLY WORK UP…IT HAS DONE WONDERS FOR ME AND ASIDE FROM THE HEALTH BENEFITS, IT HAS MADE ME A CALMER, MORE GROUNDED PERSON AND BELIEVE ME, I NEEDED THAT IMMENSELY. STAY POSITIVE, GOOD LUCK