Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 02-29-2012, 12:47 AM #1
kccat77 kccat77 is offline
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Default Migraines continue, looking for options

I'm on day 39 of the migraines. My neurologists have referred me to Cleveland Clinic Neurology department but I won't be seen until May 2nd. Two nights this week I haven't been able to sleep due to the pain of the migraines. I'm coming up on the last final days of my 30 days of short term medical leave and will probably ask my doctor to extend it another 30 days due to the headaches and PCS/depression.

I've started with a new therapist this week to work on the PCS and PTSD and I think she will be very helpful to me. I'm looking forward to seeing her again. The suicidal thoughts I've had lately due to pain and and lack of life due to apathy have me in a very bad place.

I follow up with my regular doctor in a few days and I don't know what my next step is or should be since I can't be seen by another specialist until May. I obviously can't continue like this for over another 2 months as it's already almost 40 days as it is.

Can my doctor admit to a hospital for headaches? If so, can doctors at a hospital do anything there for me?

Has anyone ever used Botox to cure headaches before?

If I continue my paid short term medical leave another 30 days at work, could I be terminated? I was already approved for paid leave for 30 days. I have sent an email to my HR person asking this but wanted to know if anyone had any experience with this.

Thanks for your help. So glad this board is here. I wish I would have found this board 11 months ago!
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Old 02-29-2012, 02:23 AM #2
Mark in Idaho Mark in Idaho is offline
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If you get medical leave as part of your employment package, you should probably be able to use it all before getting into a risky situation.

Here in Idaho, employees can be let go for any reason whatsoever.

What is your new therapist doing for your PCS? I have not heard of a therapist treating PCS before.

Has you neuro done anything to check you intra-cranial pressure?

I think EsthersDoll has benefited from resolving her increased ICP.

Hope you get a break from your pain.
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Old 02-29-2012, 03:11 AM #3
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Well part of my PCS is depresession, anxiety, and apathy. She will be working with me to start working through this. I've only seen her once but already feel good about her because she gets that I had a brain injury and understands that I've been through hell and back. The last therapist told me to "persevere" and I was angry for days after seeing him. He also wasn't addressing the PTSD either.

Ohio is also an fire an at will state too. That's why I'm a bit worried.

Current neuro hasn't done anything to check intra-cranial pressure. This is the first I'm hearing of this.
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Old 02-29-2012, 04:40 AM #4
Mark in Idaho Mark in Idaho is offline
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Worst case, you should be able to get all of the medical leave you have earned plus any vacation days. Otherwise, your value to them as an employee will be the deciding factor.

Did the drunk that hit you have insurance and/or assets? Sounds like your losses should exhaust any liability insurance he had. Your lost wages included.

The anxiety issue is not necessarily fixable by a therapist. There is plenty of anxiety that is a result of how the brain behaves from a physiological basis. There are two ways you can approach it. CBT (Cognitive Behavioral Therapy) can help you with the anxiety that is thought based. The physiological anxiety needs to be attacked by moderating your environment and activities.

Your PCS brain over-reacts to stimulation by releasing adrenaline. This increases how your brain processes any stimulus, whether it is conscious thought or physiological responses.

Learning to avoid the environmental stimuli is a very important skill for those of us with PCS to learn.

The apathy and depression are part and parcel to PCS. Many of us treat it with meds that also help with the anxiety symptoms. The depression caused by pain is another issue. I hope you can find some relief from the pain.

My best to you.
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Old 02-29-2012, 12:44 PM #5
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Hi kkat, Mark let me know you are having ongoing headaches. I also had an ongoing headache for about 6 months that I referred to as "headaches" even though it was one ongoing headache - my cognitive functioning was so poor I could not communicate very well at the time. It started off as a somewhat normal-feeling kind of headache, but ibuprofen nor tylenol would work to quell it, which was odd when I had a headache. Over the weeks and months it became worse and worse and worse in terms of the pain I was feeling from it and the side effects of it.

Since many neurologists now believe that migraines are hereditary and I had never had one before the accident I was in that caused the mTBI and no one in my family suffered from migraines, the first neurologist I went to did not think I was having migraines. He did not address them the first several times I went to see him - I was suffering a LOT of symptoms and he just didn't have the time to talk with me, I was always shoed out of the office before I could even really start talking. Plus my speech and cognitive functioning had been damaged to a point that it was very easy to disregard what I was saying. He decided I was having tension headaches. I tried to argue with him and he wouldn't hear it.

Before this accident, I would work through a tension headache. I was a very tough gal and worked a lot in a very physical, male-dominated industry and this was the norm. I worked when I was sick, etc.. So, I decided to see a different neurologist.

These "headaches" were so bad that they were sharply throbbing and the throbbing was all over my body as well. I couldn't move or do much fo anything because of the pain. All I could do was lay down on my couch. Standing made them worse, activity - even walking, made them worse. My depth perception was all messed up, but I didn't really realize it at the time. Even though it was on ongoing headache, it would increase in severity at different points.

The second neurologist I went to decided that even though migraines were not a part of my family's or my history, that the head injury had kicked off something called status migrainosis - on ongoing migraine that is severe and lasts for weeks and sometimes months if left untreated.

She prescribed me a LOT of different medications to treat migraines. In addition, my PCP had prescribed me a narcotic to treat the pain and it did not even scratch the surface of the pain. I wanted to increase the dosage of the narcotic and the neuro wanted me to decrease it; I listened to the neurologist.

After one month of taking a very aggressive approach to the headache under the new neurologist's care- this is about 5-6 months after the accident - my boyfriend finally convinced me to go to the ER to get a really strong narcotic to treat the pain. A friend of his does that when her migraines are really bad and that's still what we thought was wring with me.

I had to wait a long time at the ER, the entire process of getting there was horrible for me. They gave me something called dilaudid, and it cut my pain in half. I looked up online that this drug is supposed to be 10x stronger than morphine, The Dr. at the ER asked me if the pain was "dull", "throbbing" and on the "side of my head" which I now know is typical for migraines. And sometimes it was... but at this point in time I told him that my pain was "sharp", "continuous" and "behind my eye".

My boyfriend urged me to tell my neurologist that because it seemed out of the ordinary.

I told her and she ascertained that I probably had iicp, increased intracranial pressure. She ordered me a spinal tap and it relieved the severe pain I had suffered for 5-6 months within five minutes.

I was ready to kill myself if the pain didn't go away; and normally I'm a very happy and joyful person!

I've read that iicp occurs rarely with concussion, only about 3% of the time.

Since the spinal tap I have been recovering from being on 6 months of bed rest and the initial injury. The iicp may have damaged my brain further than the original injury, but there is no way to really determine that.

Please, make sure you tell your Dr. or Neurologist details about all the pain you are feeling and the different symptoms you have and your history. Make sure you write it down and just give them the piece of paper in case you forget.

Some people get iicp randomly, without a known cause, and here is a website for a foundation to educate people about it with some great information:

http://www.ihrfoundation.org/
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Old 02-29-2012, 03:47 PM #6
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Thanks Estherdoll! I have an appointment with my regular doctor tomorrow. I will mention all this to her and see what she thinks. When I do get to finally see my second neurologist, I will also mention all this too. Thank you. It's always good to have new information handy. I really appreciate you sharing your experience with me as all this info is new to me. I can only hope they can figure something out shortly.
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Old 02-29-2012, 03:51 PM #7
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Thank you Mark for contacting Estherdoll!
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Old 02-29-2012, 04:30 PM #8
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I've suffered from migraines for over 35 years.

Most of the time Imitrex works, sometimes miraculously. Other times it does nothing at all, or I have to take many doses. I've been to the ER at least ten times with a particularly bad one, even paying for the $1000 ambulance ride. My last one was treated with Dilaudid, but it took 3 injections and finally an i.v. drip to kill it.

Hydromorphone is a very powerful opioid, much stronger than morphine as you said, and from what I understand much more addictive (and I know what morphine addiction/withdrawal feels like).
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Passenger in auto wreck, mTBI:
  • CHRONIC FATIGUE SYNDROME
  • MYALGIA (generalized muscle pain)
  • MIGRAINE HEADACHES
  • INSOMNIA
  • ANGER & SELF-CONTROL (going "Frontal")
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