Major headaches

Major headaches

Posted by bestofboth on Feb 27, 2016 10:34 pm

I am new on the site and looking to find out if anyone has experienced what my son has been going through the last 3 weeks or so.  He is a C4 quad, for 7 years now, now 26 years old.  He has a suprapubic and the night of his last tube change he suffered an excruciating headache and very high blood pressure..... Dysreflexia for sure... We thought it was a result of his tube change (every 3-4 weeks), perhaps it had scratched his bladder or something.....  He had 3-4 headaches that night... saw the urologist the next day.... found that he had pseudomonas, MRSA and another bacteria ... UTI... .AGAIN... Ended up in hospital with the headache 3 days later..... Treated for UTI's in hospital, dilaudid for headaches.. released a week later and still headaches, but not as intense and not as often.... Now, 2 weeks later, UTI gone after IV meds, but still headaches once a day or so with a low grade one constantly.  No signs of bladder spasms, but perhaps this might be the problem? 
Anyone had this issue before?

Re: Major headaches

Posted by iva on Feb 28, 2016 3:57 pm

Can't help but just to say be brave!!! 

Re: Major headaches

Posted by Bill on Feb 29, 2016 2:29 pm

Hi Billie,

My name is Bill Cawley and I am the manager of the Peer &Family Support program, our national peer mentoring program.  I am going to share your post on our peer mentor private FB page.  If any of our mentors have had similar experiences and any suggestions I will share  their feedback with you.

I also wanted to let you know that we have peer mentors all over the country that provide mentoring for people living with paralysis as well as their family member and caregivers.  If you have other questions or would like to discuss other issues please let me know.  You can email me at but I will also be checking back here for replies.  To learn more about the Peer & Family Support program you can read  about it at

Take care and good luck,

Re: Major headaches

Posted by lila on Mar 5, 2016 9:33 am

It is very helpful! Really thank you

Re: Major headaches

Posted by Timshe on Mar 5, 2016 7:47 pm

I also have a suprapubic catheter (38 years) and I change it regularly every 3 to 4 weeks. On occasion I feel discomfort for a few hours or overnight after the change. I always change it in the evening (in beb) when I'm done for the day and have been well hydrated throughout the evening prior to the change. It is not uncommon for me to have some discomfort including elevated blood pressure and sweats on my left neck and shoulder.
I do believe what you're experiencing requires a urologic consultation since your son could be experiencing muscle spasms in his bladder after the catheter change and at the very least pain with the insertion of the new tube. It's very dangerous for your son to continue having headaches and high blood pressure as you have mentioned. I hope you have a blood pressure cover so you can monitor how high it really is.
In my experience this is not common and should be addressed by your son's healthcare professionals.
There are medications that work effectively for bladder spasms, medicationss that can help minimize/control your son's blood pressure when you're doing catheter changes and numbing lubricants for insertion as well.
I wish you and your son well and I hope this information is helpful.
By the way I am a peer metor.

Re: Major headaches

Posted by Timshe on Mar 5, 2016 7:59 pm

One additional thought regarding your cath changes. Prior to changing my catheter I take one ciprofloxacin (500 mg) prophylactically to help minimize the risk of an infection. UTI’s are very common for me and I also have Pseudomonas colonized in my bladder. This was prescribed by my urologist as a way to minimize my risk of infection at the time of cath changes.

Re: Major headaches

Posted by bestofboth on Mar 6, 2016 6:28 am

Thank you for your responses. Finally the headaches have dissipated and I'm able to do my son's program each morning without dyreflexia stopping me. What a relief! It's possible it was bladder spasms, as his urologist had mentioned while Cruise was in hospital, but there were no other symptoms, like reflexing, so we discounted that at the time.he did get a contrast X-ray 2 days ago to rule out any gastro issues..,still awaiting results and did begin a med for bladder spasms several days ago, which may have taken part in alleviating the headaches.
we do gave a BP cuff to monitor his blood pressure. His urologist and primary were both aware of the situation but the frustration is even his primary doesn't understand AD! Nor do most Drs in the hospital, especially in the ER. We go they the same routine each time we go there. 
Perhaps, Bill, a local mentor might help us find a Dr nearby who is familiar with SCI. I will look on the site to find one.

Re: Major headaches

Posted by davidvicky on Mar 11, 2016 10:42 pm

Re: Major headaches

Posted by prc_Beth on Mar 16, 2016 3:21 pm

Hi Bestofboth!

My name is Beth and I am a part of the Information Specialist Team here at the Christopher & Dana Reeve Foundation. I am sorry to hear about your son's headaches. I was wondering if you have gotten copies of the Autonomic Dysreflexia wallet cards to have on hand. You can order them off the website or call the office to speak to an Information Specialist and we can mail some to you. They are good to have on hand.

Here is the link to the area to order them:

Associate Information Specialist
Christopher & Dana Reeve Foundation
Paralysis Resource Center
636 Morris Turnpike Suite 3A
Short Hills, NJ 07978
1-800-539-7309 x7220
1-973-467-8270 x7220

Re: Major headaches

Posted by nam on Aug 8, 2017 10:56 am

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