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Can anyone decipher my neuro letter?

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#1 Thu, 23/04/2015 - 01:11
Last seen: 7 years 11 months ago
Joined: 17/04/2015 - 23:39

Can anyone decipher my neuro letter?

First of all sorry for the long post again.  I am still pretty stunned and getting quite low because of everything, so want to learn as much as I can about my problem.  I have a tendency to ramble on anyway!

I had the MRI scan today and what an experience that was!  Felt like I was being loaded into a torpedo tube, then treated to the noise of a pneumatic drill in my ears for 45 minutes!

i don't know if it will make any difference, but I had a small attack while in the tube and they had to redo that particular part again.  They said they aren't allowed to tell you what the results are, but that I should get in contact with my GP tomorrow.  

Anyway, I also received an interesting letter from the neuro consultant today summarising my appointment with him last Thursday and was wondering if anŷone had heard of some of the things that are written in it or if anyone can translate it from medical terms into lay mans terms.

 the main point of interest to me is this bit, which all sounds very technical...;

"the association with Klinefelter syndrome is intriguing as sunct is associated with abnormalities of the hypothalamo pituitary axis.  He requires brain imaging to look for structural lesions around the pituitary, hypothalamus and posterior fossa that might cause a secondary trigeminal activation syndrome mimicking sunct and also a full pituitary blood screen."

I had the blood test the same day as the neuro appointment and spoke to GP yesterday for results.  Was told some of the tests are outside the normal ranges but he doesn't have a clue how to interpret them!

the letter goes on to say the plan is to try the lamotrigine for 8 weeks then if it fails, to try each of the following; carbamazepine up to 800mg for 8 weeks, Topiramate up to 100mg for 8 weeks, possibly gabapentin, and "intriguingly clomiphene 100mg".

he says that "we need to try reasonable treatment in turn and give them an opportunity to exert their effect" and that..."they must be continued for 8 weeks to know if they have an effect or not".

So it looks like this could go on for months and months which is really not good as they won't allow me to work with this problem, and neither would I want to due to the risk.

He also mentions that should all that fail then "more advanced intervention will be needed", and I'll be referred to the national hospital for neurology and neurosurgery for ONS.

i get the impression that all this is more to do with cost than anything else?  Medication probably being cheaper than ONS or surgery?

my follow up appointment is for 4 months time Beee

Again, sorry for jabbering on and on!

Thu, 23/04/2015 - 18:30
Harrietjt's picture
Last seen: 6 years 7 months ago
Joined: 22/10/2014 - 12:47

Hi Tony, I'll give it a go!

I think the sentence about Klinefelters, SUNCT and the hypothalamo pituitary axis being interesting, is because Klinefelters causes testosterone problems, testosterone production is controlled by the hypothalamo pituitary axis, and SUNCT appears linked to abnormalities in the same area.

He wants imaging of that specific part of the brain to see if there is an abnormality causing a problem with the trigeminal nerve (the nerve that is so painful in SUNCT) that is pretending to be/behaving like SUNCT?

I think the full pituitary blood screen is to check out if there are any abnormalities of things in the blood that are affected by the pituitary (a gland in the brain near the hypothalamus that controls hormone production) that might then provide a clue as to what is going on.

Have to go out, will look at the rest later!


Fri, 24/04/2015 - 07:20
Harrietjt's picture
Last seen: 6 years 7 months ago
Joined: 22/10/2014 - 12:47

Hello again,

Re the meds to be tried in turn, as I understand it the first four he wants to try are the ones that should usually be tried. I think the word 'intriguingly' has been applied to Clomiphene because it is usually used as a fertility drug for ovulation. However it also raises testosterone levels and there has been a case of someone with SUNCT being very successfully treated with this drug. 

It is really tough to cope with the prospect of being off sick for ages while you try all this out, but the plan to work through the medical options before surgical interventions is the appropriate one. Because they don't know which treatment might work for you, they have to start with the most straightforward least invasive treatments. It would not be good patient care to jump straight to surgery. 

It is very hard to be the person with their daily life completely devastated, while the neuro calmly works through a long list of options. Very unfortunately this is the nature of these hideous primary headache conditions.

On a positive note, it seems that in your case the advantage of being very rare is that this is very interesting to the neuro. Hopefully that will help you to get the best of attention from the medics.

Hope something in these thoughts might be useful to you in getting your head round it all. The huge disadvantage of being rare is that it is so very isolating. And your life has been turned upside down and it is out of your control, all deeply stressful.

Very best wishes,


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