Hallucinations, migraines, and doctors- frustrated

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,
sailingm

I am so sorry that you are trapped in an endless migraine spiral. I certainly understand how the more "creative" aura symptoms you are experiencing can add to your anxiety and stoke the fire of migraine. Can you remind me - have you tried botox? I also read recently that some docs are using propofol to break the cycle of pain. For me at least the migraines seem to feed off each other and if I can break the cycle somehow I can have a day or two not interrupted by pain or my aura symptoms.

It is exhausting to also have to fight with the medical establishment...........I know your parents have gone with you to appointments but could you possibly find a social worker or medical advocate who can work with you. I am a medical advocate for a friend with a history of cancer and heart failure and I know it helps her to have me come to appointments to make sure that her concerns are taken seriously.

I know we can't fix this for you but you know that we support you and we are here when you need to vent.

Hi All,

Thanks so much for the advice.

I woke up this morning and had another episode of hallucinations. I called my neuro's office and spoke with the nurse, she put me on hold to speak with the dr, then told me to come in as my neurologist wanted to see me. I woke my roommate up and we went to the neuro's office.

I described what happened during these episodes. For example, I have a poster above my bed and there are some oyster shells in it- when these episodes occur, not only to the oyster shells moved, but they appeared to be moving towards me. I know this isn't real, but it is scary. My roommate was also helpful in desribing what happens as I generally stare into space for a bit and also tell her about the hallucination. My neuro said it could be one of two things- either siezures or an eye problem that occurs with migraine. I am scheduled for an EEG on the 24th, but the nurse said that she would have it moved up and I would probably get it done early next week.

As for the headache, he basically said- just try to rest until the IV. He didn't want to add any medication or take any away, which makes sense. So right now, the only thing to do is rest. i am not as anxious as I have been- probably because I know there is a plan in place to figure this out.

As to medical advocates- I always take someone with me. Usually, it is one of my parents. But I have been very fortunate to have some wonderful friends who have gone with me to drs, ERs, and such. It is always better to have two pairs of ears rather than one in these situations.

thanks so much for the advice and for letting me veent.

Pain free days,
sailingm

I've had this type episodes for years. I don't know if mine are migraine or seizure (partial)related since I have both. Sometimes when I wake up I see small black circles floating on the walls or ceiling. Other times it's colored dots floating in the room. The image varies.