does caffeine trigger symptoms?

[Bottledigger]

[Manofmendip]

Hi.

Do you have APS?

Dave

[Bottledigger in reply to Manofmendip]

Hi Dave,

Hello,

To be honest...I don't know. I have been to the ER a couple of times, and was referred to a neurologist and every test known to man has been run with no results, everything comes back "normal" and "healthy" for the most part. I have resorted to doing online research to try to figure it out on my own. My symptoms come an go with no rhyme or reason. They usually start with a tingling and numbing in my face on the left side around my nose and lips, (I have a tinnitus most days), which then progresses down my arm and leg, they become very weak and It's extremely difficult to walk and sometimes I can't do that. When this all started, my "episodes" would last a few minutes, they have progressed to 15 min, then 1/2 hour and then they started lasting longer and last weekend I had one that lasted two hours. Sometimes I get Auras like I used to get when I was a young boy just before it went into a full blown migraine, I am getting the auras but not the migraine. I'm forgetting simple words, I know what they are but just can't seem to get them out. What prompted my "caffeine" question was it seems to trigger these episodes, but then again, I have stopped coffee for the last week and I had a couple of episodes this weekend. My friend suggested to do some research on "Hughes" and that's what lead me to join this site. Some of the symptoms appear to fit. Right now the only thing I am taking is aspirin and a statin drug. Up until recently, I wasn't on on any drugs and consider myself healthy at 68. Any ideas, thoughts would be welcomed.

[jetjetjet]

With me i drink a canister a day- Dc's don't like it - i have to have constant fluids , all the meds I take dry my system right out. so i make it weak - you could read a paper threw the canister. so I say no i don't believe it does to me - but a good thing to remember is that we are all different-and this is what makes this dis-order so hard to deal with--jet

[MaryF Administrator]

Do you have APS/Hughes Syndrome, please do give us more information. MaryF

[Bottledigger]

Hello,

To be honest...I don't know. I have been to the ER a couple of times, and was referred to a neurologist and every test known to man has been run with no results, everything comes back "normal" and "healthy" for the most part. I have resorted to doing online research to try to figure it out on my own. My symptoms come an go with no rhyme or reason. They usually start with a tingling and numbing in my face on the left side around my nose and lips, (I have a tinnitus most days), which then progresses down my arm and leg, they become very weak and It's extremely difficult to walk and sometimes I can't do that. When this all started, my "episodes" would last a few minutes, they have progressed to 15 min, then 1/2 hour and then they started lasting longer and last weekend I had one that lasted two hours. I'm forgetting simple words, I know what they are but just can't seem to get them out. What prompted my "caffeine" question was it seems to trigger these episodes, but then again, I have stopped coffee for the last week and I had a couple of episodes this weekend. My friend suggested to do some research on "Hughes" and that's what lead me to join this site. Some of the symptoms appear to fit. Right now the only thing I am taking is aspirin and a statin drug. Up until recently, I wasn't on on any drugs and consider myself healthy at 68. Any ideas, thoughts would be welcomed.

[MaryF Administrator in reply to Bottledigger]

I agree with my colleague below regarding looking into Hemiplegic Migraine, the National Migraine Centre in London, is somewhere where you can self refer if you can't get local help. Also if you are suspicious that it possibly could be Hughes Syndrome, there is really no harm in asking your GP to do the correct blood tests where are cheap to do, I will put there here for you, if they come back positive then the next step would be to use a specialist of your suggested list, but I do not suggest this route without at least doing the blood tests first: hughes-syndrome.org/about-h...

MaryF

[bcod in reply to MaryF]

many migraine variants exist....but are a diagnosis of exclusion ie other cranial and systemic problems must be excluded with tests and radiological studies....and of course clinical work up by neurology.

[MaryF Administrator in reply to bcod]

Most work is normally done by rheumatologists and haematologists and sometimes a good neurologist, clinical symptoms and blood tests do form the whole picture. MaryF

[Manofmendip]

I agree with my two colleagues.

[beautymonster85]

I've got APS and Lupus both following strokes. I drink about 1-3 cups of coffee per day and don't have anything trigger symptoms. The only thing is, I'm so used to caffeine that it probably doesn't effect me like it does some people. I know some that are even allergic to caffeine and it also can conflict with some meds, so be sure to check with your physician about that.

[dotnikdavis]

I have APS, and now probable Lupus according to my new PCP and Hematologist, I see a Rheumatologist in March for a full Rheumatologic Evaluation. I suffer from 3 different types of Migraines and Caffeine is one of my triggers if I drink too much of it. In small amounts, say 1 cup of coffee here and there I seem to be fine, but much more than that and I am almost guaranteed a migraine of some sort.

[GinaD]

Statins can cause myalgia -- i.e., muscle weakness. But even if you suspect this, consult your GP! Stopping statins abruptly can cause a lot of problems. Certain autoimmune conditions tend to show up at certain ages. It is rare for someone your age to develop APS.

[Rhian21]

caffeine is the only thing that helps ease APS migraines. I used to hate coffee, but accidentally discovered that it eased the pain when all else failed..I soon grew to like it. I now take it like medicine when my four day migraines first appear and I get a little pain relief by doing so..hope this helps

[mamagail in reply to Rhian21]

Agree. Caffeine is one of the only things that ease the pain of my APS migraines. Unfortunately mine is in the form of diet soda. Wish I could like coffee!

[JanBad]

I changed to decaf tea a few years ago due to incontinence problems, but I cannot give up my lattes (I have a mini Starbucks set up in my kitchen, with all the tools and ingredients, including flavoured syrups) I restrict my self to 4 expresso measures a day and none after 5pm. Luckily I have never noticed it affecting my APS symptoms.

[bcod]

After trying to pin bad effects on caffeine for decades...it seems that there may be some mechanism for bad effects: ie the adenosine receptors which modulate inflammatory responses are affected by caffeine....just google it . How much this enters into clinical cases I don't know....