the neurologist's letter to my GP
Jan. 31st, 2013 12:43 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
morwen"However, over the past nine months there are different symptoms. She said things started when she had two occasions when she felt dissociated for a few hours, with some general shakiness of all the limbs. She got quite upset about these. She was seen at the City Migraine Clinic at Charterhouse, they gave her Domperidone and Ibuprofen for acute migraine attacks, as well as 10mg Amitriptyline for prophylaxis. She tried to increase the prophylaxis but got sedated at 20mg."
not accurate, I got sedated at 10mg and didn't even try the 20mg because of this.
"I understand you changed this in the summer to Atenolol 50mg, but she subsequently stopped this because of the lack of efficacy".
not accurate, I got changed by the Charterhouse clinic again, and stopped because I got frit that this was causing the new symptoms from November.
"Please note that Atenolol does not really work as Propranolol in headache prophylaxis. Nevertheless, her symptoms got a bit better in the summer.
However, there were various issues including stress at work and she obviously spent more time at home than at work."
Not over the summer! The summer was brilliant! I'm not sure where the hell this "she obviously spent more time at home than at work" thing came from. I didn't say anything like that, and it's not true. Does he think he's Sherlock Holmes?
"From November 2012, she has been getting a different type of headache which is daily in nature, pulsating, usually on the left side all the time, feeling itchy, and she has been taking a lot of analgesics with daily Ibuprofen with Codeine on top, sometimes every few days."
This is true.
"In addition she also has none physical symptoms with lapses of concentration, she may stare at things for some minutes, she has poor sleep and is not refreshed in the morning, she has become more anxious, she feels that she has word finding problems, and her memory and concentration are worse."
I think anyone who knows me and has seen me recently would testify that this is more than me "feeling" I have word finding problems.
"She admits to some reduction in her mood."
Gee, you think. Note how this is couched as "admit".
"The neurological examination was entirely normal."
I'm not qualified to comment on that.
"There was a bit of muscle tension around the neck."
That would be caused by my hypermobility, by the way.
"The patient has chronic daily which is not migrainous. This is exacerbated by analgesic over use. I suspect that main culprit can be linked with her poor sleep, anxiety and possible low mood, hence she has got various other non headache symptoms, including concentration, memory and word finding difficulties."
I had poor sleep then, because I'd been trying to avoid taking analgesics. It's not been poor generally.
"I have reassured her that there is nothing untoward from the neurological view point,"
I ask you!
I was not "reassured" in the slightest by that appointment.
"and in order to get better that it is important that she really tries to reduce the analgesic used, for example, down to two tablets a week level."
I stopped. Since the 13th I stopped outright for about two weeks, and have only broken this to take 300mg of ibuprofen, one time it got particularly bad, and then on Tuesday I think I tried a Paramax. Neither had any substantive effect. Overall the withdrawal of analgesics hurt like hell for a few days but the head symptoms are not back to more or less how they were. Funnily, my joints hurt a lot more than they did prior to this! (he didn't ask me whether I needed to take painkillers for other reasons. I do.)
"In terms of restarting the prophylaxis, I will leave that to your capable hands. I told her that, in fact, the main thing to treat the underlying poor sleep and anxiety in order for all the symptoms to improve."
I do not have underlying poor sleep and anxiety. What poor sleep and anxiety may exist is largely caused by a health service failing to diagnose me properly, and my skepticism about whether I will just magically get better in the absence of any treatment.
not accurate, I got sedated at 10mg and didn't even try the 20mg because of this.
"I understand you changed this in the summer to Atenolol 50mg, but she subsequently stopped this because of the lack of efficacy".
not accurate, I got changed by the Charterhouse clinic again, and stopped because I got frit that this was causing the new symptoms from November.
"Please note that Atenolol does not really work as Propranolol in headache prophylaxis. Nevertheless, her symptoms got a bit better in the summer.
However, there were various issues including stress at work and she obviously spent more time at home than at work."
Not over the summer! The summer was brilliant! I'm not sure where the hell this "she obviously spent more time at home than at work" thing came from. I didn't say anything like that, and it's not true. Does he think he's Sherlock Holmes?
"From November 2012, she has been getting a different type of headache which is daily in nature, pulsating, usually on the left side all the time, feeling itchy, and she has been taking a lot of analgesics with daily Ibuprofen with Codeine on top, sometimes every few days."
This is true.
"In addition she also has none physical symptoms with lapses of concentration, she may stare at things for some minutes, she has poor sleep and is not refreshed in the morning, she has become more anxious, she feels that she has word finding problems, and her memory and concentration are worse."
I think anyone who knows me and has seen me recently would testify that this is more than me "feeling" I have word finding problems.
"She admits to some reduction in her mood."
Gee, you think. Note how this is couched as "admit".
"The neurological examination was entirely normal."
I'm not qualified to comment on that.
"There was a bit of muscle tension around the neck."
That would be caused by my hypermobility, by the way.
"The patient has chronic daily which is not migrainous. This is exacerbated by analgesic over use. I suspect that main culprit can be linked with her poor sleep, anxiety and possible low mood, hence she has got various other non headache symptoms, including concentration, memory and word finding difficulties."
I had poor sleep then, because I'd been trying to avoid taking analgesics. It's not been poor generally.
"I have reassured her that there is nothing untoward from the neurological view point,"
I ask you!
I was not "reassured" in the slightest by that appointment.
"and in order to get better that it is important that she really tries to reduce the analgesic used, for example, down to two tablets a week level."
I stopped. Since the 13th I stopped outright for about two weeks, and have only broken this to take 300mg of ibuprofen, one time it got particularly bad, and then on Tuesday I think I tried a Paramax. Neither had any substantive effect. Overall the withdrawal of analgesics hurt like hell for a few days but the head symptoms are not back to more or less how they were. Funnily, my joints hurt a lot more than they did prior to this! (he didn't ask me whether I needed to take painkillers for other reasons. I do.)
"In terms of restarting the prophylaxis, I will leave that to your capable hands. I told her that, in fact, the main thing to treat the underlying poor sleep and anxiety in order for all the symptoms to improve."
I do not have underlying poor sleep and anxiety. What poor sleep and anxiety may exist is largely caused by a health service failing to diagnose me properly, and my skepticism about whether I will just magically get better in the absence of any treatment.
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no subject
Date: 2013-01-31 03:42 pm (UTC)no subject
Date: 2013-01-31 04:17 pm (UTC)Going to make a couple more posts.
no subject
Date: 2013-01-31 11:07 pm (UTC)I'm not saying you don't have a neurological issue(s) as well but if stuff is getting worse in the winter then that could be an issue
and
(i think) your in the right age range for it to be increasingly kicking-in
the point is that a £40 lightbox from maplin for a few weeks should be able to tell you if the additional light is helping, obviously the longer the exposure the better.
the option is that if you start getting significantly better around april/may then that could be a pointer for next year
as with everything else this can be a matter of exclusion of possibilities until you get to an answer.
for example it only took me 20+ years for me to work out I had ADHD... despite meeting the criteria for most of my life
no subject
Date: 2013-01-31 11:40 pm (UTC)SAD cannot explain bone pain for example
and I HATE the assumption by medical psych's that all physiological issues in people with some form of psych problem must be "really" a psych issue
thats the logic that had defined all the symptoms of epilepsy as being "really" a psych issue
and
its still the logic in the UK that ME/CFS is purely a psych issue despite its recognition by the WHO (and the rest of the planet) as physiological disorder
I just wish medical psych's could be a bit MORE scientific and admit that they don't know how the mind or brain works and won't know for at least another 50 years. The rest of science can cope with admitting it doesn't know. We (as the people on this planet) have just spent close on 2 billion to test a theory in Switzerland because we could not explain why gravity happened. What is the big issue with recognising that in terms of the mind/brain we are akin to seventeenth century medicine.
now just rub this salve of ground-up leaches on your scalp and...
no subject
Date: 2013-02-01 12:51 am (UTC)Still, I am fairly certain I have a (combination of) known disorders. What they are and whether they are treatable is another matter.
no subject
Date: 2013-02-01 12:48 am (UTC)One really annoying thing is another - more direct - trigger is light anyway, so when I'm migrainey The last thing I want is a bright light in my face. I've gone back to using incandescent bulbs here because they feel nicer, anyway, I don't know what's going on there exactly but it's a thing.