Hi folks

I am on day 10 of a migraine now. Yes, I know that sounds dangerous. I took my prescription meds for it but that didn't work.

I have noticed that my burning pain in my cripsy area is more intense that usual. My entire right arm and shoulder are burning along with the right side of my neck and my right ear.

I'm wondering if the intensified burning might be linked to the migraine in any way. I'm sort of hoping it is because the migraine is bound to end eventually and then maybe the burning will get back to its usual levels.

KimA

[RSD ME]

Hi Kim, I'm sorry you are having so much burning pain. I don't know if it's related to your migraine, but when I still had my gallbladder and the attacks along with it, I noticed my rsd would cause horrible burning pains in my rsd hand, my other hand and both my feet and my stomach. It would last sometimes for hours. Now that my gallbaldder and stone attacks are no more, I notice that the burning pain isn't happening as frequently or as strong so far. Maybe our rsd does get aggravated when we have other problems. I am not a dr so I don't know for sure, but maybe your extreme rsd burning is related to your migraines. I would check with your pm dr to see if he can find something that can get rid of your headaches to see if that helps. I still have acid in my stomach, but the rsd burning doesn't seem as bad as when I had gallbladder attacks. I hope you feel better soon. I will be praying for you. From your friend, Renee.

[Nanc]

Hi Kim! Sorry to hear about your migraines and intense cripsy burning. I have been getting migraines since I was a kid and get bad headaches very often. I have what I call a baseline headache every single day...I actually don't remember a day without one. Anyway, I remember when I was getting these ice-pick stabbing type of migraines, my RSD pain was always worse or would flare up. My PM dr and neurologist called them RSD induced migraines.

If you haven't already done so, tell you doctors what is going on. You might need something different for those migraines...what are you currently taking?

Hope you get some relief soon!
Nanc

Nanc, that sounds awful! I'm so sorry you always have a headache. That must get maddening. I really appreciate you sharing your experience with me. Hopefully, when the migraine goes, the burning will settle back to its usual intensity.

I have Imagran (sumatriptan) for the migraines. I held off taking it though because I'm so sick of taking meds so I didn't take it until yesterday. Maybe I should have taken it on the first day of the migraine. I used to take Pizotifen daily which did reduce the number and severity of my migraines. I haven't taken it in some time and am reluctant to start up again. I am trying to find something that will help with the CRPS b*llsh*t so I don't want to confuse things by mixing in other meds right now.

For CRPS, I tried Nortriptyline but that made me groggy even after a month of taking it. Although it was given to me for neuropathic pain, it is supposed to be an anti-depressant. I was so very tired taking it, I just can't imagine how that would have been if I was depressed! My doctor has given me Amitriptyline to try but I haven't started that yet. I have some annual leave coming up, so I will start it then. She said it is very similar, so it may make me groggy as well but it is worth a try.

I probably do need to sit down with my doctor and go through everything. Unfortunately, I really struggle to be open about how much I am suffering. I go with the "it's not so bad, I'm fine" approach. I realise that may not be entirely helpful.

I was actually diagnosed with migraines many years ago when I had a transient ischaemic attack at work which was caused by a migraine. My colleagues thought I was having a stroke. I was completely out of it and have only a vague recollection of being at the hospital. I don't remember getting there or having the MRI. So, maybe I should be talking to my pain specialist about my migraines. Hmmm.

Kim

Thanks, Renee. I'm so glad you were able to have your gallbladder out and are feeling a bit better. It is helpful to know that your burning was worse when you had gallbladder attacks. I know it isn't exactly the same thing but it does seem that CRPS acts up when anything else goes wrong.

[Brambledog]

Kim, I really hope that migraine is subsiding now...ten days is too long for a migraine, for all sorts of reasons

I echo what the others have said - tell your GP and pain doc as soon as you can so that they can factor it in to your meds and your CRPS symptoms. It might be connected, it might not, but they need to know about something like this because it's that off-the-scale kind of thing that CRPS seems to provoke.

For what it's worth, I find every kind of ailment is worse with CRPS, and whenever I'm feeling ill in some way, the CRPS burning symptoms are worse, and can seem to crop up in the area that's suffering. It's like the crips visits anywhere poorly to join in the party for a while....not cool. As whatever it is gets better, the crips skulks off again. My actual spread has just happened totally unconnected to anything else, with no rhyme or reason that I can fathom.

Take care of yourself, and try all the soothing things you can....I hope something works very soon.

Bram

Thanks, Bram. I really need for this migraine to stop. It is wearing me out and making me so whingey. You guys are all right, as always. I need to talk to my pain specialist about the migraines as well. I did see one of the GPs in my GP's practice yesterday. He gave me a new prescription for sumatriptan and said to come back if it doesn't help. I did not tell him it was making the cripsy burning worse.

You are so right about the crips visiting any poorly area. I know my crips likes to go walkabouts every once in a while. It is odd that yours just spread without any obvious precipitating event. I'm so sorry.

I have made the very difficult decision today to lay off caffeine for a while. I hope it helps (and I kind of hope it doesn't because then I would have to think about giving up coffee).

Thanks for your support.



Kim

[Brambledog]

Hey, hang on in there Kim....you'll be ok, this is just a crappy time. It will get better again. Honest

On the subject of coffee, I read up about this because we always used to drink caffeine-free coffee, but I was getting headaches (obviously not migraines, but there are some similarities). Anyway, there was some interesting research that showed that people who drank the odd cup of proper coffee each day had less headaches than those who only drank caffeine-free coffee. Apparently there's some compound in coffee that actually helps headaches, but when the caffeine is removed it goes too. We now drink full roast stuff, but only 1-2 cups a day, and I have definitely noticed the difference. If I get a headache, it's usually on a day when I didnt have a coffee the day before.

Now I know what you're experiencing is very different to ordinary headaches, but all I'm saying is that it might be worth a thought. I expect reading on the computer is hurting your eyes, so I'll have a scan for you and see if I can find anything about it.

Hope you're doing ok Kim, you're doing amazingly well considering everything. Atta girl

Bram

[Brambledog]

Here's a link to a site about the link between caffeine and headaches and migraines...

http://www.webmd.com/migraines-heada...ggers-caffeine

Basically, from this and some other sites, caffeine dilates blood capillaries, and is often included in pain medication for migraines as it helps quick absorption. The dilation helps more water get to your brain too, which is helpful. But, if you are regularly drinking the caffeine equivalent of about 5 normal mugs of caffeinated coffee per day (take-out coffee often contains a lot more), your body gets too used to it and any withdrawal will trigger nasty side-effects...including headaches

So some regular caffeine is good, too much is bad. Have you changed your coffee intake recently? Jut an idea.

Sorry I can't just take the darn thing away for you Kim...

Bram

[Nanc]

Hi again Kim!

It is bizarre to have a headache every day, but that baseline headache is normal for me now! I hope your migraine is easing up as well as the burning.

I was wondering if you have ever tried Topamax? I was on it for many years for migraine prevention. It worked wonders for me in cutting down the frequency drastically. I stopped taking it about 1 1/2 yrs ago because the effectivenness wore off. I am gonna start taking it again since the frequency has increased again. My dr thinks it will help my RSD pain as well. Also, the migraine medication that worked the best for me was Amerge (naratriptan). I took that for years and it was wonderful...until I developed an allergy to it...how nice huh? I tried pretty much every other migraine med out there and this was the only one to help. Now the only thing I can take is Fiorinal when my headaches get bad and I have nothing for migraines

I would hold off on giving up caffeine just yet. Aside from the benefits Bram mentioned, giving it up will increase your headaches unless you eliminate it gradually (which is what I am working on doing right now because my caffeine comes from a daily soda). The caffeine headaches/migraines are awful!

You definitely need to discuss your migraine with your drs as it has gone on way too long. Also, you guys need to re evaluate your meds. Is it possible that something you are taking is causing it? That is one of the things that happens to me when I cannot tolerate a med, most have cause migraines (on top of other things). You need to be honest with your dr about everything that is happening, they cannot help you if you do not tell them. I've been there with the "I'm fine, it'll pass" I got over it real quick when nothing was "passing" and now I tell them everything!!

Sorry if some of this doesn't make a lot of sense, I have had a massive headache for days!

Take care,
Nanc