Hallucinations, migraines, and frustration with doctors.- need advice

Hi All,

I have been having a really few weeks with migraines. They have really been horrendous and I am really frustrated.

Yesterday, I began having hallucinations. I have experienced hallucinations with migraine since age 18. Yesterday's hallucinations were more frequent, vivid and scarier. (ex. I have a picture of oyster shells above my bed and the shells appeared to be moving off the picture and coming towards me.) It scared me, but I quickly realized it was part of the migraine and went straight for the "big guns" of migraine meds. (Tylenol3, Ultram, Klonopin and benedryl.) I experienced several other episodes during the day.

It was scary. I woke up this morning and had another episode. I called my neurologist immediately. The nurse spoke to the neuro and called me back. The nurse said that the hallucinations were simply part of the migraine. I asked if there was anything I could do to stop it or calm down. She said, "No, it may be due to medication, or migraine- the only thing you can do is close your eyes and rest." I called the neuro at 8 and I woke up at seven- I was able to sleep.
I don't think this is medication related and it just feels more like migraine than anything else.

I wound up taking another klonopin because both the pain and the anxiety were getting worse. It helped some.

Right now, I just do not know what to do. I am scheduled for an IV on Monday. I am just really tired of drs just writing things off or blaming medicine without looking into the problem. I have heard this way too much lately- from the drs at CC, and now from my neuro. I haven't been this scared of migraines for years and I am still scared.

I do have a call in to the head of the headache program at the University hospital about 90 miles away. So maybe a second opinion will help. I just wish I knew what to do and how I am going to survive till the IV.

Any advice would be welcome.

Pain free days,
sconesail

aww you poor thing... :[

hallucinations in migraine are not too common, but they do happen. I can imagine they can be pretty disturbing
if not downright scary. I think I can recall one or two former Ronda's members having migraine related hallucinations, too.
I don't think at least one of them was taking the same meds as you do, so, yep, it is not necessarily induced by medications.

Many years ago, I once got a virus induced panic attacks. What helped me get thru these scary episodes
was awareness that "I am NOT gonna die - this, too, shall pass". And it did.
The whole bout lasted appx two weeks, then it was gone, whew.


Hang in there, Scone. I hope you'll meet your dr House one day. Just keep searching for one.

Please keep us posted how are you doing, always.

Risa

Scone,

It sounds like you've had an "Alice in Wonderland" effect. It's part of a migraine. I've gone through this a few times--quite strange indeed.

It does go away and the best is to chill and rest. But when you get something really odd, it's always wise to give the doc a call.

Good luck, and hunt down new docs.

-PF

I recall as well that there were a few members on Rhonda's. Must be a scary thing indeed. I think Clueless gives you very wise advice in talking yourself through panic and anxiety. It's hard to do when you are halluncinatiing, but many people do it while having to deal with daily hallucinations. Hang in there, the anxiety will pass if you try hard to calm yourself down and remind yourself that it's anxiety.

Please make sure your docs are aware of this new symptom. Hang in there!

Hi All,

Thanks so much for the replies and support. I know I've said this before, but I will say it again- I am not sure what I would do without y'all.

Yes, I think it is definitely an "alice and wonderland" episode.

Today, I have had several more episodes of hallucinations/alice in wonderland symptoms. Even though I know exactly what is happening, it is still very scary. I am pretty much out of mind with fear and head pain. The headache is about a 9.5. The anxiety from the hallucinations isn't helping, and neither is the fainting.

I don't know what to do right now. I am scared, I am hurting, and I just feel helpless as there is veery little I can do about any of this. I have the IV of depakan scheduled for Monday and I hope that will help. I doing my best to stay calm and am trying not to let the anxiety get the bext of me. I know it will get better, but it is hard to deal withh this right now. If things are still this bad tomorrow, I may call my neuro again- just to let him know how long this is lasting and see if he has any ideas or if there is anything to do to get through things till Monday.

Meanwhile, I will take his advice and try to rest. Fortunately, I only have one thing shceduled for tomorrow. I plan to rest and such the rest of the time.

Pain free dayhs,
sconesail

Sconesail, I know I act like superwoman a lot but I've had to deal with anxiety quite a bit in the last while. I was almost going out of my mind and every once in a while it crops up again.

It's hard to talk yourself down but it is totally possible. Your mind starts running so fast because it's usually due to a symptom that is new and very scary. It's hard to convince yourself that it's the anxiety talking and not something that is going to need urgent medical attention.

I've had to do a lot of self talk to stay calm.

Clueless has me wondering now if it may have been part of a virus. I'd figured it was from some change in meds.

It really hard, but the self-talk does work. Hang in there

I know I had mine due to a virus because a number of us girls had the same symptoms at the same time,
for the same length of time, and it went away more or less at the same time for all of us.

Too much of a coincidence to not to be due to a common denominator, hmmm.

Hope you guys find good ways to deal with your anxieties. Self- talk certainly helps some, even if it's not a sure cure.
I am sorry you guys have to deal with it
Wish I could help you somehow better.

Risa

Hi All,

Thanks again for all the advice.

I am glad to have better tools to deal with it than the "just close your eyes and sleep approach," that the nurse suggested. I have been trying the self-talk strategy and it helps some. I am also trying to concentrate on some simple things- needlepoint mostly (I just learned how, and it helps a bit.) All oof these make it a little better, but I am still really scared.

The other thing that is scaring me now is that pretty much everyone who knows me can tell I having a rough time. The pharmacist even commented on it and said "What's wrong? You just aren't your usual chipper self" They were right. I am still terrified with the pain and the new symtoms. I had a couple more episoes this morning. I will probablly end up calling my neuro again just to let them know that this is lasting longer than it should be. If there is something he can do, great. If not, he can, at the very least put it in the chart.

I don't have anything that has to be done this weekend. I have training today but that only lasts an hour. Otherwise I think the best thing to do now is try to rest, and see if that helps.

Pain free daus,
sconesail

Hi All,

I spoke with my neuro's office Friday Morning- and the nurse said "Come in now. He wants to see you." So I did and was seen very quickly. He is trying to figure out whether it is migraines or seizures and has ordered an EEG. It is probably part of the migraine, but he wanted to make sure. It tentatively scheduled for a week from Mon, but will be moved up.

I have the IV on Monday at 1pm

I have just been resting sinve then, which is good ad the headache is horrendous.

Pain free days,
sconesail

Hang in there over the weekend. I'm glad your doctor is taking an active approach.

Hang in there!!!!

take care of yourself scone, and keep plugging away at the docs. the aura should have dissipated as the migraine changed or weakened.

if i have an aura, from what i've described to the neuros, has been identified as the "Alice in Wonderland" effect.

i had a bad one after a brain angiogram. this is where they put in a femoral shealth and it's done in a cath lab. they load you up with contrast dye and shoot pictures of your brain.

it was pretty scary. after the procedure, i was supposed to order lunch. i started to look at the menu in recovery and everything was coming at me from the menu--towards me and away. most likely it was an M triggerd by the brain angio. nasty, nasty business.

had one recently, which is a bit disconcerting. i usually don't get aura....when i do, that raises the bar for me to go to the ER.

good luck my friend!

Hi All,

I had the IV of Depakan yesterday. It has helped- in that it brought the pain down to a bearable level. Though it was one of those times, when you say "Wow, I knew the headache was bad, but I didn't know it was that bad after the pain has been knocked down"
I still sort of tired and headachey- pretty much the way I feel when I have done too much. However, I think it is because my body was fighting the pain for so long lately. I just hate it. There isn't much I have to do this week, but it is still frustrating.

I did get in touch with a friend who knew the headache specialist at the University hospital. (He is a neurologist there- though he specializes in dementia/alzheimers. He knew my old neuro and the one who took his plave quite well- also worked with the new guy.) Once I described my case to him, he said "Stay there. this guy is more research than patient-oriented and frankly, you are going to be better with your neuro." He also said he would tell his wife the same thing.

I have had one or tow hallucinations since the IV, but nothing as bad as those last week. My neuro has me scheduled for an EEG though, just make sure they aren't seizures. He thinks they are migraine and so do I.

I am still fainting a good bit. Haven't heard from CC, but I really don't expect too. Right now, I am just going to keep going and keep searching for an answer. I am also praying that I will be matched with a service dog soon.

Pain free days,
sconesail

Scone, That must be very scary! I had some hallucinations from a muscle relaxer that involved devils and pitchforks. I'm glad you got some relief from your IV, you needed it. I really hope you can find the strength to keep searching for someone to help with the fainting. I admire your spirit to keep going with such debilitating symptoms.
Hugs,
Cindy