Hi again Kim,
I took the original post out but left the part about the coffee. It worked for me. I may be the last one in the herd though, not the fasted. God luck at the GP tomorrow.

Anyone suffering from RSD/CRPS; to consider coffee as a simple conveyor of caffeine is naive.


Coffee;

Coffee should be avoided altogether in patients suffering
1. Coffee has an acid-based oil that is an irritant to gastric mucosa. It stimulates the secretion of gastric acidity. Secondarily, the high gastric acidity results in secretion of adrenalin. The secretion of adrenalin stimulates insulin secretion with resultant secondary relative hypoglycemia. The end result is tension, a mild rise in blood pressure, and 2-3 hours later craving sweets because of the relative hypoglycemia. Obviously none of the above is helpful in RSD/CRPS. The rise in plasma epinephrine will undo whatever good medications are doing to counteract the hyperactive dopaminergic system in RSD/CRPS.

2. Coffee is more harmful than caffeinated soft drinks or tea.

3. Mild tea does not cause reactive hypoglycemia and a rise in blood pressure.

4. Tea, if prepared in mild form (not too strong), contains less caffeine. It has no acid-based oil as does coffee. It contains tannin. Tannin or tannic acid curbs thirst and results in less demand for further consumption of tea or coffee.

5. Coffee and tea both temporarily raise the body temperature. A few minutes after drinking coffee, the stimulation of the dopaminergic system causes colder extremities and a simultaneous rise in systemic temperature. Tea has a much milder effect in this regard. The cold extremities aggravate RSD/CRPS.

6. Iced tea seems to be the mildest and safest of caffeinated drinks.

7. A patient with high fever is harmed by coffee and helped by tea and lemon juice. As is the case with home-made chicken soup being helpful to the sick (in contrast with factory-made red meat type of soup) for unknown reasons, mild tea has a healing effect and coffee has an aggravating effect in patients suffering from stress and fever, including stress of complex chronic pain.



Herbal tea

Just because tea is less harmful than coffee does not imply that herbal tea is good or healthy for anyone. Herbal teas are a variety of different dried vegetable leaves. Some of the herbs contain toxic substances that are harmful to anyone- including RSD/CRPS patients. Because of the variety in strength and quality of chemicals in herbs, the use of herbal teas should be avoided. Some of them contain such high doses of tannins (e.g., sassafras tea) that can be carcinogenic. Catnip, juniper, nutmeg, and hydrangea may be hallucinogenic. Chamomile and marigold may be fatally allergenic. Senna leaves, aloe leaves, and duck roots can be strongly cathartic. Mistletoe leaves and horsetail grass may cause fatal toxicity. So why bother with such chemicals?

Hi Kim, not sure if you went to your GP yet today. I just wanted to wish you luck and hope he/she could offer you some help! Keep us posted as this has been going on way too long.

Here is an interesting device that was just recently FDA approved in the U.S. http://www.cefaly.us/?gclid=CPaLvaShx70CFYt9OgodSiQAaw

I had botox for my stabbing, ice pick migraines...it worked!! BUT, in true Nanc form, I was allergic to it Within a couple hours of the treatment, I had a rash on my neck, chest and down my left arm. I was not happy!

Thank you so much everyone! It is lovely to have such support. Vrae, Nanc and Bram, it is so kind of you to post research for me. It is so difficult to research anything with a migraine with aura so it was really helpful.

I don't think I have had one single migraine for the entire two weeks; rather, I think I have been having back-to-back migraines. I think I started a new migraine today because the pain wasn't quite as bad but the aura symptoms were awful.

The doctor gave me Propanolol to try to break the cycle of migraines. It is a beta-blocker and is supposed to inhibit vasodilation. Once we get this cycle broken, he wants to talk about getting me back on the Pizotifen, which worked well for me previously (you know, before I stopped taking it).

I really hope this works because, Bram, you are so right - I am completely exhausted. I have gone to work every day (Mon-Fri) through this whole episode so far. I'm not saying I have been terribly productive but I have done my best and I have stayed late to make up for my lack of productivity during the day. Honestly, I am so completely worn out that I just want to sleep all weekend. Of course, we know that isn't possible no matter how tired I am. My cripsy bits are acting up something fierce. It's like my arm is saying sure, you're head hurts but don't forget your arm is on FIRE and in a vice and being stabbed repeatedly, and on and on. You all know the list of fun sensations.

Wow! I am just super-whingey today. Sorry about that. I also hope this post makes sense. The aura symptoms are strong today. So, so foggy and confused.

Did I mention how much all of your support means to me? You are all amazing and your support is priceless!



KimA

Kim, you may just have mentioned it once or twice... but that's just fine. We like it .

Now look here young lady (imagine a caring yet fierce Bram type voice lol), whilst I think you are completely awesome and amazing just to have tried to keep going with everything while all this sis going on, I also think you are perhaps just a tiny bit insane. I mean that in a nice way

As I've said to our young Vrae, you are not superwoman. Not quite . You must let up a bit on the workload while these migraines are hitting you, otherwise you will end up completely run down, and then get some nasty bug. You can't keep asking for so much from your body when it is suffering so much...

You need to rest a little more than you are, give your system a chance to catch up and recuperate a bit....just some time to breathe. Think of it as an old-fashioned Victorian sea-cure, without the seaside (boohoo).

In the meantime, I absolutely insist that you have some me-time (you-time, not time for me lol) and have a teensy pamper. A nice bath, a massage, some soft music, glass of something nice and soothing, soft lights, a cuddle from a lovely person Some things that can make you glow a bit, even through the migraine...

Keep your fluids up too. It's amazing how much difference that makes.

So take care of yourself my little fluffy Easter bunny chick of tweetiness just for me. You are too special to have such a tough ride. Like so many of us.

Gosh I've used a lot of smilies!!!! Whoops

Bram

@KimA: Reducing caffeine intake would help with migraines. I wish your well on your journey. <3

Ugh...migraines suck!

I had one a couple weeks back for 4 days. 5th day I went to the ER. I hate going there, but sometimes they get too bad. There are the migraines I can push through and still kind of function, but if I'm in a dark room and bed for days with no relief it is ER time to break the cycle.

My neurologist said to take my imitrex the second I feel the migraine coming on. Then it has the best chance of working.

My frequency of migraines has went up since this stupid RSD. Now that I have insurance I'm gonna get back to the neurologist and try to get them under control. I have found going to the chiropractor to be helpful in reducing the frequency.

Hey Kim,

So glad that you were able to get into the doctor and sounds like you have a plan to rein this in. Poor thing having to work with the headaches.. ugh! Bad enough with the arm. I do understand the fatigue. I have felt pretty energetic the last couple of days and of course I try to accomplish all that I have been failing to do days prior. My days start pretty darn early and by early afternoon, I'm like a toddler who needs an afternoon nap. I will get crazy tired sitting at my desk. Eyes all rolling and crossing, and head bobbing and I seriously think I may just drop asleep right there. This is beyond a medication issue, although I know that's not helping. This bothers me so much that today I did a quick search about severe fatigue w/ CRPS and I found this http://www.rsds.org/pdfsall/Systemic...ns-of-CRPS.pdf (I've seen it before, just been a while). And on page 3, right hand, right third paragraph:

The severe fatigue suffered by CRPS patients may result in part
from the sickness response circuitry [76]. Other contributing
comorbidities are disruptions of sleep architecture,
hypothyroidism, secondary hypoadrenalism from a
chronic stress response, deconditioning and severe depression.

Anyway, again, so glad that you are on track to perhaps get some relief!

Kim - hope you are finally getting some relief. Glad you got to the dr and have a game plan. I have heard that beta-blockers can help, hope that holds true for you.

I really don't know how you have worked thru all of this...wow, you are a trooper! But Bram is right, you need some "me time", big time!!

I am gonna start my Topamax tonight. I delayed it because I was trying a new drug for cholesterol and if I had problems, I wanted to be sure of what was causing them. And yes, I had problems with it Hopefully the Topamax will work because I woke up with another migraine this morning. It woke me at 6:00 am so I got up and took a fiorinal with a little can of coke and ate toast. Now it is just a massive headache.

Keep us posted on this new medication path you are on!
Take care,
Nanc

Sorry I haven't been back with an update. I have been taking the beta-blockers since Friday night. They seem to be helping. I'm not exactly migraine-free but I am doing much better.

Vrae, I can totally relate to the toddler in need of a nap feeling. And Bram, I would LOVE a Victorian sea-cure right about now. I do have a couple of weeks of annual leave coming up but I'm not going away. I am going to try to rest a bit. I know I need to rest more and work less but it is tricky. I just keep trying to be as productive as I used to be. Perhaps more than a tiny bit insane, eh?

My thinking is still a bit fuzzy so I had better keep this short.

Thank you everyone!



KimA