Symptom driving me wild
 

Ok, as some may know, I had a crappy week. Symptoms came back. Tingling in legs and such, numbness in legs and hands...

The 1 symptom I have that is really bad, painful even, that's constant, is in my head. From the very top of my head, down to my cheek bones (right above my top gum line), near the top middle part of the head, to the back of the head, not in the forehead at al, I have a feeling of pressure and heat sensation. It's painful. But a different kind of pain from a regular old headache.

I can't tell if it's migraine or MS. And at the end of the day, it doesn't matter what condition is causing it. Just how am I going to go about treating it.

Neuro's being seen Monday, and I'm definitely going to tell him about this. It's very agonizing as you can imagine.

Has anyone else had a similar pressure/heat feeling in their head? I've had this sensation in my legs, and I seem to recall having it in my head in the past, but my memory's foggy.

http://neurotalk.psychcentral.com/forum26.html

Trigeminal Neuralgia

sounds very much like TN i am no expert but maybe you might be able to see if its a lot like this

there is also a headache forum here they helped me when i first got TN

I don't recall mine hurting down to the jaw but then again my head hurt so much it very well could been bothering me and i didn't feel it. yesterday here two others described their TN a lot like yours, was not sure if you knew where the TN forum was so threw in the link.

knowing what you are going through i found darkness was my friend ice helped too heck i was wearing my shades in the house at one point

I hope you feel better real soon

sorry you are having the crappy week continue! I had that headache a few years ago.... but I got it when I had Mono. It sounds just like it. Now I just get the prickle / tingle / numbness in the same area from the MS.

let us know what the Neuro says on Monday. Good luck! Does a cold cloth on your head / back of the neck help or where it hurts? I use that when I get a migraine. Some people use a warm rice bag but not me, I need cold in a dark room for a migraine.

I dont normally have head/face pain. I did have spurts in the past that my jaw bone bugged me, but it turned out I needed a root canal to be re opened, and repaired.

I just wanted to say I was thinking of you, and hope you feel better soon. its the weekend! do something fun! distraction therapy is a good thing.

TN is most likely, but TMJ is another consideration.

Could you have infection of any kind? Are you having any other new or worsening of symptoms?

:hug: dmp

Cherie

Well, I am diagnosed as having TMJ, along with the MS.

My TMJ dentist suspected Trigeminal Neuralgia prior to my official MS diagnosis.

I always was under the impression that TN would affect 1 side, not 2.

This is from the center top of my head, down to my neck (involving all of my head, minus the forehead), and pain in my cheekbones. Not side specific.

Ugh, if only I could buy Aleve here!! WITHOUT a prescription! If I have inflammation in my jaw, I've no doubt that it could extend into other areas of the head. I've been here before. :cool:

One thing's for sure... either my burning mouth crap that I've dealt with so long is on it's way out finally and has moved to involve my head, or the head's experiencing such pain that I'm not focusing on the burning mouth. Silver lining in every cloud? ;)

i don't know but monday can't come soon enuf.
i hope your dr can help you.

That reminds me of my pin-prick neurological itchiness . . . which is apparently a "misfired pain signal". If I have a few places going at the same time, I use antihisitmines (thanks to Chris' suggestion a couple of months ago). But, if it is just one spot, I use a freezer pack. Somehow the coldness distracts my brain from acknowledging the itchiness (which is actually pain :p).

My doc prescribes 100 X 500 mg of Naproxen at a time. I take 2 X 500mg per DAY, as necessary. Get a clinic (or your doc) to do the same . . . if you are not one to have tummy issues with Naproxen/Aleve.

Cherie

I've actually taken Naxproxen on a few occasions. I didn't notice the stomach upset with it, but I was warned that it could definitely be an issue. The prescription I had came with warning stickers about the stomach. I believe it advises to eat with the pills, but it's been a while so I don't remember.

This weather we're having this summer is not helping my situation either. It's been raining for 3 weeks. Yesterday it was sunny (hurrah!) but today we're back to cloudy, rain, dismal. I've always been affected by pressure changes, but this is unreal!

My muscles in my shoulders are also sore... so I'm siding a bit on tension, but do tension headaches or pains create a burning sensation as well?

Urgh. :p

limit alcahol ,take with food and plenty of water, and not to be taken if in 3rd trimester of PG, side note do not take Aspirin with naxproxen, take the tylenol type of med, with it, been warned a few times by docs about this i cant recall why i just know 3 have warned me about it

Aleve is Naproxen . . . they are the same drug. The only difference is the dosage.

http://www.medicinenet.com/naproxen/article.htm

If someone requires 1000 mg of this drug a day though (Aleve is only 220 mg), they need to be monitored by a doc. This is true especially if they need to take it a fair amount (which I have had to in the past).

Cherie

This almost sounds like the "spinal headaches" (my word, not a medical word) that I get sometimes. They come on like an attack (in fact, they are an attack), and last for about 3 weeks. I do get a headache with them, plus the neck and some spinal column pain. :(

Cherie

Maybe that's it Cherie. I don't know, I'm done playing guessing games. I just have to get through the rest of the day, tomorrow, and then see my neuro 10am on Monday. I'll probably feel much better after seeing him ;)

Oh yeah, so tonight the pain was horrible. I grabbed my cold pack from the freezer and put it on my head (kinda just covering the top half of my forehead and the scalp a bit). Upon putting the cold pack on my head, the pain started to go away immediately. The same is true if I put the cold pack on my cheekbones etc.

SO weird! At least I found something that provides a bit of relief. It's like the nerves are freaking spasming in my face. I can kinda feel em in my cheeks right now firing off like little firecrackers.

Edit: Not so weird. I began reading about TGN or TN on the net after making this post, and one thing I saw mentioned was that cold relieves the pain with the condition. I wasn't too happy to see stuff like 'oxycodone' mentioned for long term treatment however.

Laura, I have TN that hits both sides.

"bilateral" TN is not the usual manner, but it does occur.

Trigeminal neuralgia (TN) occurred in 35 patients (1.9%) from a large multiple sclerosis (MS) clinic population (N = 1,882). TN began on average 11.8 years after the first MS symptom but in five patients was the first symptom of MS, preceding the next MS symptom by 1 to 11 years. The onset of MS was later in the patients who had TN, and bilateral TN occurred more frequently than expected (in 14% of TN patients).

http://www.medscape.com/viewarticle/431442

Seven consecutive patients with multiple sclerosis and trigeminal neuralgia were investigated with MRI to determine the occurrence of a lesion which would account for the patients' pain. Two patients had bilateral symptoms.

http://jnnp.bmj.com/cgi/content/abstract/59/3/253

Wow, thanks for the information!! :)

This is certainly painful. Ouff.

Laura, I got it first time deep in my right ear, like an icepick stabbing.

thought it was Otitis Media (ear infection) but ENT-guy (ear/nose/throat) said nope, no inflamation.

so, I thought maybe TMJ, but dentist said no, and no teeth problems either.

so, finally went to neuro, and by then, zings and throbs had spread, intermittently to upper cheekbones, behind ear, temples, and sometimes even by my nose.

neuro explained it was the Trigeminal Nerve, and showed me a diagram of the nerve and its branches, which matched up with the pain almost perfectly.

he told me that getting pain on both sides wasn't common, but he'd seen it before.

not usually on both sides at the same time, it seems to take turns, and he said it was due to a lesion in the "pons" area, I think.

anyway, after 20 years of MS, I gotta say, it's my LEAST favorite symptom, because I never know when it's gonna REAR its UGLY head, and take my breath away with the sudden sharpness of agony.

Butalbital (generic name for Fioricet) helps some, at least it dulls the pain.

hugs, and hope you and your doc figure out what's going on with you.

Oh boy, Laura. I hope you get some relief soon! Ouchy ouchy!! :(

Well the good news is, I was able to get out and get some groceries before the pain began to return, but it's much reduced currently from what it was yesterday.

It's definitely an involvement of both sides, the left being more pronounced. I don't think it's gone yet, but the cold packs and then warm bath (yes, surprisingly I can tolerate this!) I think pushed the pain away. At least I got some relief, even for a brief period :)

that's good to hear !!

Cayo, do you find relief when sleeping? I find that I have never been woken by the pain.

I was going to ask you as well, how is trigeminal neuralgia diagnosed? Is there a separate testing that is conducted to see if this is in fact the case?

I'm 99% sure that this is indeed what I am feeling. Those links you posted were especially interesting... I didn't have "MS" symptoms to my knowledge until about 3 years ago (age 28), but you know, I had my first suspected TN attack at age 26. That was a period of about 2-3 months when I'd get the sharp stabbing pains out of blue. At 31, my neuro said he suspected MS for at least 5 years. Possible that my 'attack' of suspected trigeminal neuralgia could have been the first 'symptom' that presented itself in relation to my case of MS? Very interesting.... I didn't have further MS 'symptoms' for at least a year after that attack, and the next was the numbness in my fingers.

Hrm, well I saw my neurologist today. He seems to think what I'm experiencing is actually migraine and not trigeminal neuralgia. His 'basis' is that if it was TN, I'd have stabbing quick pain, not the dull boring pain I'm experiencing.

He upped my amitriptyline to 20mg instead of 10mg, and told me to try Advil instead. I don't think he realizes how much pain I'm actually experiencing. But if this solves the issue drug wise, better this than 'harder' stuff.

My blood work came back in excellent shape from my monthly testing, and I've lost a lot of weight eating healthy... 124 pounds now! Which is great since I'm just a tiny girl at 5'2 :)