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Posted 9/3/2007 6:54 PM (GMT 0)
 

Hi everyone,

I suffer from chronic daily headaches, hemiplegic migraines and migraines with and without aura. I see a headache specialist in London and I am going next week for a caffeine infusion, which actually will be my third.

My specialist believes that my CDHs are due to my spinal fluid pressure being too low, as my headaches increase in severity during the day and ease slightly after I have been led down for a while. The first caffeine infusion improved my headache for 10 hours and this was then followed by four very severe migraines. I agreed to have the procedure done again and the results of that were that my CDH was greatly improved for a week, although I felt totally exhausted. So the idea behind having another one is that hopefully it will last even longer this time.

I am just curious to know if anyone else has tried this and what the outcome was?

Kind regards,

kala

 

Posted 9/3/2007 8:10 PM (GMT 0)
Sorry everyone that I ended up posting twice...I don't know what happened there!!!

Kala
Posted 9/4/2007 1:13 AM (GMT 0)
about your spinal fluid pressure....have you had a spinal tap to determine if this is really the case? Or is the doctor just speculating?
Posted 9/4/2007 3:09 PM (GMT 0)
Hi Korbnep,

I was admitted for three days in order for my doctor to try and determine whether my CDHs are a consequence of CSF pressure dysregulation or have a migraine biology.

I had an MRI scan done with Gandlinium enhancing, which is a neuroimaging test to indicate whether there is dysregulation in CSF pressure. My result came back unremarkable, although the test is not 100% conclusive. And due to this my doctor decided that I should have a caffeine infusion to see if this helped relieve my pain instead of having a lumbar puncture (spinal tap), as there was the possibility that this would aggravate my headache.

So in reply to your question, my doctor is speculating that my CSF pressure is too low by the diurnal pattern of my CDHs.

Kala

Posted 9/5/2007 2:27 AM (GMT 0)
From what I understand, CDH is occasionally caused by CSF problems, but it seems like a pretty big assumption to me without a conclusive test.
Posted 9/5/2007 6:25 PM (GMT 0)
Hi Korbnep,

At the end of the day I believe that my doctor is working in my best interests and although the benefits have been short-lived in the pasts, I have at least seen a benefit in having a caffeine infusion. So this is (for the time being) satisfactorily enough for me. Although I do have several questions that I would like answering when I next see him.

I would be interested to hear from anyone else who has had caffeine infusions in the past and what their experiences were.

Kala
Posted 9/12/2007 1:46 PM (GMT 0)

Hi everyone,

Just to up-date, I had my third caffeine infusion on Monday. Whilst I was having it done my CDH reached a 7 on my pain scale but by late evening, when I returned home it reduced to a 2. For me this is rather remarkable. Yesterday the pain remained at a 2 for most of the day except for two ocassions when it increased to 3.

Unfortunately this morning I woke with a migraine, although only mild I took 800mg Ibuprofen and thankfully that has kept it at bay, although I am feeling very tired. I just hope that this doesn't cause my CDHs to return to their normal range (varying from 6 to 8).

Kala

Posted 10/25/2007 4:47 PM (GMT 0)

Hi everyone,

Just as a follow up to my last caffeine infusion, my CDHs remained relatively low in severity for about 10 days, with two migraines in the middle.

I have today received information from my doctor that he would like to investigate to see why I have low spinal fluid pressure. Due to the benefits I receive from the caffeine infusion being rather limited he thinks that I may have a leak and has asked me to consider having a test to determine this.

If the benefits I received from the caffeine infusion lasted for a several months he wouldn't normally bother, but as mine only last for a matter of days he would like to try and determine the cause of my CDHs.

I am waiting for a consultation date, which should be in January, so thankfully it isn't too long to wait for me to discuss this with him.

Kala

Posted 10/25/2007 8:04 PM (GMT 0)
Low CSF pressure can indeed cause chronic daily headaches. If you find that this is the case, I wish you good luck in treating it! I think that there are probably plenty of us here that wish they could find a specific cause for their headaches. So, although there may be hard times ahead, hopefully this is the first step toward stopping your headaches!
Posted 10/26/2007 10:52 AM (GMT 0)
Hi Korbnep,

Thank you for your support. I do at least have some hope of finding an answer to my continuing suffering. Whether he finds a leak or not, I am just pleased that he is willing to investigate. My local consultant is just happy to keep dishing out the tablets which cause severe side-effects.

I just know that if I could be rid of my CDHs then coping with my hemiplegic migraines every 6 to 8 weeks (with other migraines in between) would be more bearable. Although he is willing to tackle them next!! Although, I shouldn't be getting too excited because at the end of the day it may not be answer.

As my headache nurse said to me, there is an answer out there for everyone, it just takes longer for some to find the answer than others. And after suffering from hemiplegic migraines since the age of 7 (I am now 31) and CDHs for the past 11 years, I am hoping I am getting close!

I am thinking of you all.

Kala
Posted 10/27/2007 1:14 AM (GMT 0)
There is a name for problems with migraines related to CSF pressure, its something weird like pseduotumor cerebri. It's some kind of problem where your body thinks you have a tumor and produces more or less CSF. My doctor did a lumbar puncture it find out if this was the case for me, maybe it's something to look into.
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