I need help to diagnose something...

[texpatriot]

A few years ago I suffered from serious cluster migraine headaches.

My Doctor prescribed some blood pressure meds, anti-depressants, and codeine for the pain when they didn't work.

While I was on that regimen of drugs, my left eye began to sink into the socket, and that eyelid became "droopy."

I did some research on the Internet and found that I had all of the symptoms of acquired "Horner Syndrome."

My doctor and I did some "food" studies, and discovered that the artificial food sweetener aspartame may be at the source.

So, I eliminated that from my diet, stopped taking the meds, and the cluster migraines stopped.

I haven't had a migraine since.

However, recently I've noticed that I don't perspire on the left side of my face, and now I've noticed that I hardly perspire on the left side of my body.

It took three GM doctors to figure out that I needed to see a neurosurgeon, and one neurosurgeon to find the cause of my cluster migraines.

I had a neuro-scan and they didn't find anything.

So my question is, and to avoid anymore "out of pocket expense" how do I go in and share with my Doctor what I've been experiencing without visibly showing any signs of the symptoms that I've described?

I'm figuring that I'll have to get hot and overheated before I go in to show what I'm experiencing before he or she will believe me.

For the record, I don't like hospitals, or even going to a Doctor for that matter.

When I mentioned Horner Syndrome to my Doctor, he was impressed that I went through the effort but agreed that the meds that he prescribed may have been the source.

I've been off the meds for awhile, and haven't had a cluster migraine in more than a couple of years.

However whenever I get really hot, the right side of my face turns beet red, and I'm pouring sweat.

While the left side of my face is cold, dry, and "normal" looking.

Suggestions?

 

[xtc99992003]

Well you seem to have the problem diagnosed. If you're looking for someone to actually do something about it the specialists you mentioned should do it. A neurologist should be much better than a MD/family doctor. Find one and explain all of this to them. And mention how you think it's horner's syndrome. Which I think you're spot on from what you've mentioned.

 

[KaraBulut]

Because you have a very atypical form of migraine, your best option is to see a neurologist at a teaching clinic.

Depending on where you are in Texas, you should ask for a referral to either the UTSW Aston clinic in Dallas, BCOM neurology clinic in Houston or the UTMB neurology clinic in Galveston.

 

[aquadude81]

Hey, sorry about your headaches and all the associated problems!

I'm not sure why you need to "demonstrate" these symptoms. Horner's syndrome is not uncommon (it pops up on almost every exam we have in medical school) and you are describing classical features. The lack of sweat over your entire body is unusual (usually it's the head/neck), but if you say it's happening then it needs to be investigated further. Unless your doctor thinks you aren't telling the truth, describing your symptoms should be enough. If s/he doesn't believe it, ask why. If the doctor doesn't trust you, find another one.

And I agree with above, you need neurology/neurosurgery team at a university medical center to evaluate your condition.

 

[texpatriot]

Thanks for the input, and information.

I guess my next question would be, is it anything that I should worry about?

The symptoms only become really apparent when I got hot and/or over exert myself.

Other than that there's no pain anything, and no noticeable change in my blood-pressure.

 

[KaraBulut]

I guess my next question would be, is it anything that I should worry about?

The best answer to that question is to understand that if this is Horner's, it is a syndrome not a disorder. A syndrome is a collection of symptoms not a specific disease.

The reason that we're encouraging you to go to a speciality clinic at a medical school is that there is additional testing that is needed to determine the underlying cause of your symptoms.

Once the doctors determine the cause, then they will have a better idea of how to treat the problem.

 

[jockboy01]

Very classic Horner's syndrome. A neurologist would be the best bet.

However, if the only residual symptoms you have is the lack of sweating, it's not a big deal. There's really nothing to worry about and unlikely there is much that they can do (they might try you on some anti-inflammatories for a while). Generally Horner's resolves spontaneously. Sometimes it persists. The reasoning for either isn't entirely clear. There are a lot of theories out there about it though.