Severe Stabbing/Stingin in Head - Ibuprofen?

[HaylesJohnson]

Master 10 has been having worsening headaches lately - Yesterday he had several attacks of severe, knee buckling stabbing or "Stinging in his brain" as he describes it. The pain itself lasts from 30 seconds to 2 minutes, and this can happen up to 3-4 times in half hour. There is no pain or discomfort in between at all, except if he is moving around within the first few minutes after a "Stab" - this will cause some less severe pain.

He says the whole interior of his head stings, very sharp and suddenly. He has no warning signs, just the pain. He can be sitting, laying etc. Nothing makes a difference.

 

His other symptoms were exacerbated all day also, he was irrational, opposition, and very "immature" for lack of a better term. He just went on and on and on about everything he spoke about, he was stammering through his speech, and his OCD symptoms were quite bad. Could this be a sign of inflammation?

 

I have read so many times now that Ibuprofen is recommended during times of severe symptoms - considering we still do not have our diagnosis yet and can not be 100% sure PANDAS is what we are dealing with (though I am very certain in myself!), I don't know if these pains and worsening symptoms are linked to one another, or to the possible PANDAS. I obviously took him to the ED last night as he was in excruciating pain, and I wanted to ensure I wasn't just overlooking something else unrelated, he was quickly assessed and it was put down to "His OCD stuff", and we were told to just follow up with the GP and give him Paracetamol.

 

So, I am wondering, with regards to Ibuprofen - IF we are dealing with PANDAS, do I just give him a dose when his symptoms are worse, or do you give your children regular small doses? What is the best way to handle this? Or only when he has these headache episodes?

 

We have a telephone consult with a Neuro-Therapist from Victoria next Wednesday, who says he will be able to diagnose/offer us his opinion over the phone given the history and I am also awaiting a call from Dr Golic (a Biomed)in Brisbane when he manages to find some time. We also have the Psychiatrist appointment next Friday. I know the wheels are in motion, but now that he is suffering physical pain also, I am feeling as though everything is taking far too long.

 

I have also made an appointment with the GP to discuss the headaches in the meantime, but can not get in for 4 days. She is not overly receptive of the possibility of a PANDAS diagnosis anyway, but unfortunately ,I am unable to find another GP as we are in a rural area and after phoning every clinic in town, I have been told repeatedly we need to stay with the GP we have as no one else is accepting new patients!

 

I would appreciate any advice anyone can offer in regards to the headaches/pain. Thank You.

[peglem]

I'd go with regular dosing of ibuprofen according to how much/how often the label says to give. If that lessens the headaches in duration, frequency, and/or severity, I would think this would be very good information to give the doctor when you see her. And, yes, many of us see a good deal of symptom improvement on ibuprofen.

[hugs2day]

What you are describing is somewhat similar to what I experienced with my younger son a few times pretty dramatic but more often as a mild flare. I think it is a sign of chronic inflammation due to bacterial overgrowth creating an acidic body and then the autoimmune response for PANS kicks in, its all very concerning and difficult to figure out. At times I also thought he had restless leg syndrome because it can happen at night when he is in bed more like an attack on his legs. And yes the stabbing pains are sudden he even gets them in his eyeballs like a pin prick. And ofcourse the neuropsych symptoms start ramping up along with these physical symptoms. He will scream ouch like something bit him and it goes as fast as it came until next time. The stabbing or pin pricking pains I believe are neurological electric shocks, but the root cause for my son always seems to be the recurring GI infections, and it is usually yeast overgrowth combined with acid reflux basically a GI infection resulting in systemic inflammation.

 

(He always takes azithro and probiotics and vit d daily.)

 

I start with an aggressive approach at first to get the symptoms tamed down: I give him first Diflucan or Nystatin to kill the yeast for 15 days. I also give olive leaf extract for about 5 to 7 days. Additionally, add pepcid or zantac twice a day and alka seltzer gold in between midday usually with lunch only for a few days. The pepcid for about 30 days or longer. FYI- I never knew my son had acid reflux until a dentist told me she could tell by his back molars he had acid reflux. He did not complain at first now he recognizes it and does tell me. He likes the alka seltzer gold and I do see improvement in his behavior with the above protocol. BTW_ I do give IBU for the headaches but try to limit it for obvious side effects. Neck messages and scalp massages help on the right pressure points. I also use heat or cold packs depending.

 

All of the above we spread out duting the day and lots of water for detox. The diflucan will cause a die off reaction, more stabbing pain or itching and possibly more irratibility for the first 2 to 3 days then after that it provides relief.

Change diet best we can to reduce acidity. We also give magnesium glycinate or magnesium citrate around dinner for a few days to help move bowels and supposed to help with the leg pain.

 

If dramatic improvement is not seen in 5 days then the doc will add Flagyl for 10days to address clostridia.

 

I will give activated charcoal on about day 3 to help continue the cleanse of the dead bacteria. I don't notice this helps but I read it is supposed to and I don't see any negative side effects so I still do. Also bathe with some baking soda helps, some people say epsom salt I have done those too, but I see more improvement in skin with the baking soda. Sometimes I mix the two.

 

The problem is with my son the above works for about 45 days of relief and then it comes back. His GI infections are the reason he cannot sustain remission with PANS. The azithro he is on works at keeping the strep and mycoplasma away and modulates his immune system but the gut is his enemy it seems to be vulnerable to infections. I have tried to remove the azithro to let his gut heal but he still relapses.

This is why steroids don't work well with my son because of the side effects on the GI tract.

 

My other son has sustained remission with just abx alone but he never gets the GI problems.

 

Just throwing this out there incase this is a possibility that could help your son.

 

FYI - we tested for yeast and clostridia in a urine test thru a specialty lab. Sometimes the doc will just treat clinically based on past experience with my son.

 

Best wishes to you and your child for long lasting healing. Take care.

[HaylesJohnson]

I'd go with regular dosing of ibuprofen according to how much/how often the label says to give. If that lessens the headaches in duration, frequency, and/or severity, I would think this would be very good information to give the doctor when you see her. And, yes, many of us see a good deal of symptom improvement on ibuprofen.

 

Thank You very much. We had a good day yesterday, no pain and it was a good day in regards to the compulsions and behaviours also. This morning however he has woken with head pain, so I will begin the Ibuprofen immediately and keep a good detailed journal of any changes.

 

Thank You

[trubiano]

I'd go with regular dosing of ibuprofen according to how much/how often the label says to give. If that lessens the headaches in duration, frequency, and/or severity, I would think this would be very good information to give the doctor when you see her. And, yes, many of us see a good deal of symptom improvement on ibuprofen.

 

Thank You very much. We had a good day yesterday, no pain and it was a good day in regards to the compulsions and behaviours also. This morning however he has woken with head pain, so I will begin the Ibuprofen immediately and keep a good detailed journal of any changes.

 

Thank You

 

 

 

 

 

I hope things are better! I just wanted to say the stabbing head pain has alwayss been my son's first symptom before our pandas flare. Dr. Latimer explained that his immune system is trying to kill off brain proteins that mimick strep. Antibiotics to kill the true strep are needed. We also do ibprofin, but until strep is gone the pain continues.

[HaylesJohnson]

I'd go with regular dosing of ibuprofen according to how much/how often the label says to give. If that lessens the headaches in duration, frequency, and/or severity, I would think this would be very good information to give the doctor when you see her. And, yes, many of us see a good deal of symptom improvement on ibuprofen.

 

Thank You very much. We had a good day yesterday, no pain and it was a good day in regards to the compulsions and behaviours also. This morning however he has woken with head pain, so I will begin the Ibuprofen immediately and keep a good detailed journal of any changes.

 

Thank You

 

 

Thank you for your response. My son actually had to go and have some tests done this morning as he has developed a Petechea rash - the doctor feels this is due to a low platelet count which could be the cause of everything - she actually mentioned if he was to get a headache in the meantime we are to seek immediate medical advice - I mentioned to her that he had been having headaches, but thankfully not for a few days now. I will update as I know more. Unfortunately though, if platelets are not the cause, we are STILL having much difficulty getting anyone to prescribe abx for him, its incredibly frustrating!!

 

 

I hope things are better! I just wanted to say the stabbing head pain has alwayss been my son's first symptom before our pandas flare. Dr. Latimer explained that his immune system is trying to kill off brain proteins that mimick strep. Antibiotics to kill the true strep are needed. We also do ibprofin, but until strep is gone the pain continues.

[Guest Motherbear]

I don't know if you are giving your child Melatonin at night to aid in sleep, but Melatonin caused terrible headaches for my son, and they went away when we stopped using it.

[HaylesJohnson]

I don't know if you are giving your child Melatonin at night to aid in sleep, but Melatonin caused terrible headaches for my son, and they went away when we stopped using it.

 

Thank you for this advice, but no I am not using Melatonin, or anything else to aid in sleep. Thankfully my son manages to sleep well