Sensory overload - my most disabling symptom

Specific Illnesses & Conditions VM/MAV
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One of the things troubling me the most are the sensations of “sensory overload”. If it is what I think it is. After my May 1 appointment with the “new” neurologist and trigger point injections, the neck knots seemed slightly better but the center point in the head was very sore and my scalp became more sensitive! The back of the skull was very irritated and I had constant pain. That went on for a couple of weeks. Third week into it, one visit of a friend to study together gave me a huge sensory overload. All we did was study and talk and 3 hours went by. I just don’t know why but I was very irritated after and could not function! I had to go straight to bed to calm my head down. And calm it just couldn’t get! Then came constant pain until I emailed the dr office about the situation and then got the appointment with the PA who gave me the Steroid Taper pack to calm this flare up down.

Anybody relate to this? Am I the only one whose head just doesn’t take any new medicine or procedure? Am I destined to be miserable forever?

I just can’t figure my head out. Instead of feeling better, I felt worse. :frowning:

Is there anything that can get my life back?

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22

You are not destined to be miserable forever. There is hope for you, me, and all who sure from VM and its variants. It depends on how diligent you are at following your doctor’s advice and direction, and if your doctor runs out of advice, how diligent you are at finding another doctor that will help you.

The problem is, that we are all individuals and we are all different. What works for me may not work for you. But that doesn’t mean that you shouldn’t try it. What works for you might be a variation of what works for me. So, listen to your doctor, resist being your own doctor unless your doctor is stuck, then feel free to give them a nudge.

Having said all that, when I was finally diagnosed, I had vertigo, dizziness, nausea and was unable to sit in a room with fluorescent lighting. I had to wear dark glasses and a hat to keep the light out. Doctors would come into their exam room to find their shades drawn and the lights off, and me still with my hat and sunglasses. It took over five years and I lost count of the number of doctors.

When I was finally diagnosed, the doc prescribed some new variant of Topomax that was time released. He put me on 400mg right from the start. No titration, just jumped me in. As I recall my VM symptoms abated, but I was overcome by a new symptom. I had Gurd so bad I could only eat white bread and drink water. Anything else made me sick to my stomach and I couldn’t keep it down.

I told the do that if I kept going like this I would soon waste away and we wouldn’t have to worry about the VM. He told me to stay on it, and I switched doctors.

My new doctor took me off the drug and set me up a referral to a migraine specialist. The migraine specialist put me on Toporal and said she would put me on Nortriptyline, but I was already on it for my back pain. Soon my symptoms abated, but they didn’t go away completely. She referred me to Vestibular Therapy.

In Vestibular Therapy, we did exercises to deal with moving my head that triggered attacks, and with “Supermarket Syndrome”, which was an issue for me. Eventually, they were able to desensitize me to those two problems, which were my major motion triggers. They then gave me in home exercises to do and sent me on my way.

I now track when I have an attack, what I take for it, how effective the medication was and how long the attack lasted. I take my log to my six month visit with my migraine doctor and we talk about if anything needs to change. So far we have stayed the coarse for three years.

I thought there was no hope, but I found there was hope. There is hope for you too.

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23

Thanks for your post!

Just a couple of points to clarify. My body hasn’t tolerated the more than ten medications that have been tried, starting with topiramate first. I’ve been doing Vestibular Therapy first with a UNC Vestibular Specialist PT and then continuing at home and it has not had any positive changes on my condition. I get very sick in the stores and have to run in and out within 5 minutes (which is quite impossible), don’t go beyond the produce area all the while wearing a hat and expensive “migraine” glasses, and still get very sick and have to sit in the car for a long while to get myself home to lay down for the 500th time!

Nortriptlyline helped a bit with motion sensitivity but now the 50mg does not seem to work as well. That makes me lose heart big time because out of the dozen or so meds plus the three CGRP injections, Nort is the only one that doesn’t give me the horrific side effects that made me stop the other prescriptions. It does give me dry mouth and a couple of other symptoms, but it did not make me sick in other ways. The last visit with the neuro was to undo the sensitivity caused by the trigger point injections given to me on May 1st then ended up on the Steroid pak to get the constant pain, soreness and head sensitivity down a notch. If I have migraine, then why don’t migraine meds work on me?

Now to try a new med means take another 6 months to come off Nort meanwhile be bedridden and then try another med only to find out my body can’t take that either. The only way I don’t have any symptoms is if I just sit in one spot, don’t go on the phone, don’t use the computer, don’t drive, don’t smell any smells, don’t move, don’t listen to any sounds, don’t buy any food in stores…

This causes a lot of misery when you have a headache and feel sick every single time you do any of those things! I have been diligently following my doctor’s instruction. No one can understand this! On top someone made a comment to me “I am horrified of your condition”. Thanks thoughtful person!

I pray for one day when I don’t have a sick head! Not to mention this is a 24/7 condition, not a once a month type episode!

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Because everyone is different. Even different dosages work differently and different combinations of dosages and meds.

Migraines are nasty little buggers. There are so many different variations of the symptoms and so much is still misunderstood about the melodies.

Like I said, there is an answer for you, but it is going to be a long road to find it. I know you don’t want to hear that, but you need to keep at it, and keep after the doctors. Don’t let them kick you to the back burner.

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