You've heard it all before... but talk to me anyway??!

[counterclockwise]

Hi all,

I sense this is going to be a bit of a splurge...

I guess I've not been the 'well-est' person in the world for about 10 years now (insignificant viruses and infections taking a looong time to clear, that sort of thing), and I've been noise sensitive going back before that (though not badly), but then in 2009 I hit my head.

I had the CAT scan and all was ok, but I had 6 months of severe post-concussion syndrome symptoms (main ones being mobility problems, sound and light sensitivity, nausea, energy slump).

Then things seemed to get better and pretty much normal, until around a year and a half later when I had a recurrence that lasted several days (bouts of mobility problems, l/s sensitivities, slump, problems formulating words even though I knew what I was trying to say) and what seemed like a month-long 'hangover' (head pressure in particular).

I saw a neurologist and he said the head injury had probably triggered migraines. No further checks were run. I was a bit confused because I don't get serious headaches like I'd always associated with migraines, and the head pressure I do get seems to affect my whole head. But I knew there are atypical migraines, so I just counted myself 'lucky'.

Meanwhile I picked up a couple of serious infections (well, ok, bacteria and parasites) in India. I put my massive fatigue down to those, and that probably was the cause.

I had the odd episode like the one mentioned above, but nothing too bad, and I just got into the habit of thinking the migraines+hangover would last 2-4 weeks.

Then last December, following a very stressful time at work, it happened again, this time preceded by brief 'stabby' headaches (not sure they even class as 'ice-pick' headaches, as I've seen those referred to as lasting seconds, and mine are less than that).

I've tried a variety of migraine relief and preventatives, with little if any effect. I thought I was onto a winner with citalopram when, about a month in (earlier this month), I had a wonderful week when I felt completely normal -- woke up completely ready to get up, vision was normal, I felt like I could breathe properly, and I bounded about the place proclaiming a miracle (!). But then it all hit again, and now I feel really demoralized (had forgotten how good normal feels).

I've since started to list all my symptoms, and to look them up, and MS showed up as a possibility. So back I went to my doctor. I didn't mention MS, but I did go back over the timeline and my symptoms and gave her the list. She's organized blood tests and is referring me back to a neurologist (hopefully not the same one!). I don't know whether to be reassured or worried by the fact that, having investigated MS a bit now, I know that the questions my doc started asking me clearly point to her wondering about that possibility too (very much the list of 'typical' symptoms -- some of which I have, some not).

My symptoms are:

GENERAL (most of the time)
Head pressure
Tiredness
Forgetfulness
Neck tension
Lack of old levels of focus
Light sensitivity
Sound sensitivity
Spatial awareness problems (incl. sense of outer sides of vision being reduced)

WORSENING TO
Limb weakness/deadness (including upon waking)
Exhaustion, energy slump (including upon waking)
Disconnection (feeling that body parts aren’t connected to brain or have lost sensitivity, incl. sexual disconnection and dryness)
Lack of co-ordination
Unsteadiness, balance issues
Dizziness
Not being able to focus on anything
Problems with words
Numbness in face
Numbness/tingling in fingers/hands (possibly unconnected, but does seem to occur around slumps)
Cold (incl. shivery)
Headaches (but much lower than typical levels of migraine pain; incl. brief, sharp head pains)

AND WHEN SEVERE
Vertigo
Nausea (incl. vomiting)
Shaking
Paralysis (incl. stroke-type effect and/or feeling of being trapped in body unable to move)
Hands contort and freeze up (difficulty holding and moving a spoon!)
Problems with speech (not just finding words but forming them)

Anyway, if you've got this far, thanks - and, if no-one has, I guess writing this out has been sort of therapeutic!

If you are still with me ...am I a hypochondriac???! Ok, ok, I know it's all real (especially since I can wake up this way), but it does all sound weird and I feel like friends must wonder that sometimes.

Thanks.
C

[Karenkay]

I'm not a dr so no help with any kind of diagnose.

Well, I do have MS and have experienced a lot of the same symptoms. I especially like your description of the "hangover" headache .

Not sure what else I can say except I can feel your pain. Lol

I'm sure others on this site will have advice for you.

Karen

[22cyclist]

Counterclockwise: some of your symptoms make sense and some make no sense at all, like the one about feeling like you have no movement in your leg. In an MS exacerbation, your leg would literally be paralyzed with a stroke like exacerbation, you would have trouble swallowing, one side of your face would droop below the eyebrows according to your other symptoms.

What does your neurologist say? What have you MRIs said? There is a specific way to diagnose MS through the McDonald criteria. You can google it for diagnose MS. Until you fit this criteria, you can't be diagnosed.

I hope you feel better. Have they thought of searching other diagnoses?

Take care, let us know how it goes, OK?
Lisa

[counterclockwise]

Thanks Karen and thanks Lisa.

Karen - It was so good to get your response. I know you can't help, but I guess I needed not to feel alone in this. Even if it turns out to be something else entirely!!

Lisa - I completely get the 'some of this makes no sense at all' bit, and I'm really not asking for a diagnosis. I don't necessarily think it is MS (though it is on my mind - obviously!), but I know it probably doesn't fully fit migraine, which is what the neurologist previously suggested (without ordering any tests - that's the NHS for you!).

I guess I came here because I realized I'd been worrying about MS and that my doc's questions showed she was beginning to think along those lines too. It could all be post-concussion syndrome (which is not taken seriously by many docs anyway), but it's getting worse (with new symptoms emerging) rather than better, which also makes no sense.

As I say, I only had a CAT scan when I hit my head, and that was all fine. I guess we'll wait to see if the neurologist I'm being referred to orders an MRI. I hope so: like so many here, it would help me to know one way or the other, to find out it's something else... just to come up with something that means treatment can be more focused and I can get some sort of relief.

Thanks for the McDonald criteria suggestion. I'd seen that mentioned before. Without the MRI, I'm a way off diagnosis, and an MRI could be a way off, soooo.... (Last time I was referred to the neuro, it took 5 months to get the appointment, and then he saw me for 10 minutes and said it was 'probably' migraine; the first neuro appt, after the concussion, took 6 months to come through, and he spent 15 minutes with me and said it was 'probably' post-concussion syndrome...) I guess that's limbo for you.

Thanks again.

cc

[Marie19]

Hi CC,

Weird... My symptoms are very similar to yours, right down to the worsening in the evenings and the migraine dx. However I am somewhat in limbo myself so can't really offer any advice!

Just a couple of things: you mention parasites, have you been tested for Lyme? If not you absolutely must make sure you are.

It may be worth investigating why citalopram did provide you with some relief. I believe it is actually an antidepressant, maybe there is a clue there. Not insinuating that your symptoms are psychosomatic, just throwing some ideas around What are the conditions it's recognised as effective for? Mention it to your neuro anyway.

All the best,

Marie

[counterclockwise]

Hi Marie,

Pretty grim, isn't it?! I'm sorry you're suffering too. I think I'm worse in the afternoons and evenings because processing visuals and sounds takes me more concentration than is usual. I notice that I often become bad on car journeys.

Thanks for the Lyme disease suggestion. I never noticed a rash like the one that's described for that, but I can see that the symptoms are a close match. I'll certainly ask about that.

Yes, Citalopram (Celexa) is an antidepressant. It seems pretty common to use antidepressants as migraine preventatives. They tried me on amitriptyline first, but that just made the symptoms I've been getting worse. I asked to try citalopram because, having been told I probably had migraine, migraine-associated vertigo (MAV) seemed like the one type of migraine that could be a fit. While reading up on that, I found that venlafaxine (Effexor) is the treatment of choice for that, but I'd been on that before and tolerated it really badly. However, I noticed that venlafaxine is an SSRI type antidepressant, and citalopram is too and citalopram cropped up as one of the other drugs used in treating MAV.

Before I hit my head I used to suffer from depression, and citalopam was my miracle drug then, so I knew I responded well to it and figured it might help now. In fact, I had a theory that perhaps I'd been a migraineur before I hit my head but never knew because citalopram was acting as a preventative. When the good week came along, I thought I'd cracked it, but things are back bad again. My doctor suggested upping my citalopram dose on Friday, in case that was the cause of the good week and it happens again. So far nothing, but I'm still hoping...!

Look after yourself Marie. I hope you get some good progress soon.

cc x