setbacks are horrible
 

after a pretty decent streak of improvement/plateau, i woke up with funny eyes/dizzy today. maybe it was those damn eye exercises from my neuro-chiro, or just doing more than usual yesterday, but either way i'm exhausted, depressed, feel like i'll never get well.

i'm lonely and feel like i'm exhausting my friends with this process. i also think i ticked off the one that has been the kindest to me.

grateful there are eyes/ears here that will understand this horrible feeling even if you can't make it better.

3 weeks ago i was crying for hours each day. since then i more or less dried up--cried maybe an hour total each week. today the founts have sprung again.

even just yesterday i was thinking how grateful i was i had gotten through the suicidal thoughts section of the mess i'm in. now i'm back. i'm not going to do anything because there is a seed of faith in me that i will make it out of this--because i catch glimpses of myself and my life from time to time when i come up for air.

I am so sorry you are going through a set back!

Last night in the ER I looked at the doctor and said... I am so over this! I know you are going to tell me that you are not seeing any thing new and you think this is all in my head (no pun intended)... she was shocked I said this... she sat and talked to me.. she said... I know it is not all made up... I know you are suffering... your BP is normal when I drug you (120/65) ... your BP when you are in pain is through the roof (170/108).. have faith... we will find a solution...

I hope this is right...

Sarah,

Why were you in the ER ? Just PCS or something else.

Head felt like it needed to be opened up to relieve the pressure... BP was 170/108 for 3 hours

Hasn't the doc given you some BP meds to have handy, just in case ? I have some in the medicine cabinet, just in case.

I have some but they do not work... that is the puzzling part

I would ask the doctor to try something different. You need to have a reliable just in case BP med if your BP can get high.

@underwater - I get depressed and/or anxious after or during a setback too. When I feel better I tend to overdo it and that causes me setbacks. It's been just over four years for me and I'm still learning how to "pace myself" as my Dr. has recommended to me for years. A part of it is that what I'm able to do changes every day and the ability for myself to analyze myself changes too. PLUS I'm the type of personality who pushes herself naturally - it's what helped guide me to succeed before the accident and it's a part of what lead me to my proper diagnosis and treatment.

My therapist reminds me that setbacks are going to cause me to feel bad and she tells me that when people are ill with a cold or the flu that they feel bad about themselves and feel anxiety and/or depression from having to lay down for too long too. It's a natural part of being human.

@Sarah - I'm really glad that the Dr. had time to sit down with you in order to explain to you that she believes that you really are in pain. I remember thinking that people wouldn't believe that I had a head injury within the first year after the MVA I was in - that they thought I was a malingerer. Maybe this kind of thinking is a part of having a head injury? I'm not sure...

Anyway, I remember that I had extreme pain literally in my head and that it also raised my BP a good deal. The pain meds I received intravenously in the ER helped reduce the pain and also lowered my BP. I was forced to visit the ER about 5-8 times in the first 6 months after the MVA I was in a little over 4 years ago.

My second neurologist finally discovered that I probably had an increase of intracranial pressure and the spinal tap they administered to measure the pressure inside my skull relieved me of the ongoing and ever-increasing pain.

I'm sorry that I can't remember all the details of your treatment, but have you been given a spinal tap? Sometimes an increase of intracranial pressure is too low to be seen on a CT scan or an MRI but it's still high enough to cause pain to the patient which is why they will measure the ICP with a spinal tap. If you haven't already had one, please ask your Dr. for one.



You are both in my thoughts and prayers.

Thank you! This is exactly what is happening to me... I have intracranial pressure.. I have not had the spinal tap yet.. They can see the pressure on the MRI and have talked about the spinal but have not done it yet...

@Sarah - You absolutely need to have a spinal tap ASAP. Has one been ordered? I remember I had to wait for about a month before I finally got mine and by then I was very seriously feeling like I would not be able to live with that kind of pain anymore.

Some people get increased intracranial pressure because something happens to them genetically to cause it - it's called intracranial hypotension - you can find out about it more on this website: http://www.ihrfoundation.org/intracr...nsion/info/C16

I'm pretty sure that there is a support group on facebook too.

I know how very painful it is - it is truly torturous. I think if a Dr. or the Dr.'s loved one had this then they would get the spinal tap right away. I'm so sorry you have to live through this pain.