Migraine & intensified burning
 

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

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.

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
:hug:

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.

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

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 :hug:

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.

:hug:

Kim

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 :winky:

Bram :hug:

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 :rolleyes:

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 :hug:

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
:hug:

Bram, thank you so much for all of that information. I really appreciate your help.

I usually drink 2-3 cups of coffee a day. I haven't changed that lately. In the interest of full disclosure, when I decided today to lay off the caffeine I did so AFTER I had already had my morning coffee. And I carried on drinking cola. Going cold turkey would have killed me!

Thank you so much for your kindness, as always. I cannot tell you had badly I needed that 'atta girl'. It helped my mood so, so much.

:)

Kim

Hi Nanc.

I haven't ever tried Topamax. The Pizotifen worked really well for me when I took it. I will think about taking it again, or maybe trying Topamax. That's when I'm able to think straight again. I don't know how you do it with a headache every day.

I'm not currently on any meds. I do have tramadol but I take that very infrequently and did not take it around the time of the onset of this particular migraine. I only take tramadol when I absolutely have to because it turns me into a zombie. Basically, if I take it I can't do anything at all that day. So, I only take it when the pain is so severe that I can't do anything anyway.

As for daily meds, I have tried Lyrica and nortriptyline but they both made me too groggy so I stopped taking them. I will try amitriptyline next but I haven't started that yet.

I don't take anything else apart from a very occasional Anadin Extra (aspirin, paracetamol, and caffeine). Or, rather, the store-brand version of Anadin Extra. That sometimes helps with migraines (note the caffeine as Bram explained). During the course of this horrendous migraine I have taken 3 of these (not all at once, obviously).

I have had naratriptan before and it worked reasonably well. I may ask for that again when I next see my GP. I'm so sorry that you developed an allergy to it. That truly sucks.

I am going to work on being more open with my doctors about how I am feeling. I really appreciate your support in that. I just can't seem to openly say how much pain I am in. I think: I'm tough, I can handle this, I will be fine. But you are right, I need to be more open with the doctors so that they can provide appropriate treatment. I don't mean to be dishonest with them; 'I'm okay' just comes flying out of my mouth.

I'm sorry you are having a horrible headache too. I hope your head settles down a bit soon.

Kim

When the Topamax was no longer effective, the neurologist tapered me off of it and had me start amitriptyline, gradually increasing it, I had issues with it so I had to stop it. Tramadol gave me bad migraines. Some people say that Topamax makes them dopey feeling and nauseous. It didn't mess with my mind and the nausea passed very quickly. It can also cause tingling in your hands and/or feet when you first start taking it. That also goes away. My dr told me to eat a kiwi a day and I would not tingle...it worked!! The extra potassium stops the tingling...funny huh?!?

I understand what you are saying about being tough and not completely sharing with your doctors. I know you aren't doing it intentionally. It took me a very long time to admit to it or to say out loud how bad I really was and how much I was hurting. Saying it made it so real when I wasn't quite ready to accept it. My husband gets upset when I don't share until things get really bad...he says "why didn't you tell me??"

Yeah, I was so mad when I developed the allergy to Amerge. I got short of breath and broke out in a rash the last two times I took it. It worked the best for me :( My headache has eased up for now, thanks to some Fiorinal the edge is off. I sure hope yours eases soon!!! Call the dr if it doesn't ease up!!

Nanc, thanks so much for this. It is so helpful to know that you understand. I had to laugh when I read your post because just after I made my original post my husband sat next to me and while he was rubbing my head he saw my post (he was snooping, it was just right in front of him). He asked 'You're burning is worse? Why didn't you tell me?'

A kiwi a day is a pretty awesome prescription compared to what the docs usually give us. If only kiwis worked on pain too. :p

I still have a migraine but I just spoke with my doctor. (He called me at 7:30pm, not bad.) He suggested ibuprofen and that I make another appointment if that doesn't work. I can't really see ibuprofen being of much use but I'll give it a go. My poor stomach, though!

KimA

Haha, you are so busted now!!

I am not sure what I am gonna do for the tingling this time when I start back on Topamax. I have interstitial cystitis (painful bladder syndrome) and have to eliminate so much, so many fruits and veggies including kiwi and potatoes. I have to follow a low oxalate and IC diet...ugh! I guess I will find something to help. Yeah, that would be nice if something as simple as kiwi helped our pain!

Sorry you still have a migraine. Glad you talked to your dr and that is great that he called at 7:30 pm! I can't imagine ibuprofen helping much at this point, but I guess it is worth a shot...just make sure you eat when you take it!

Oh, I get my husband to rub my head too. It doesn't get rid of the pain, but it sure feels good!

Again, I hope you get some relief soon!
Nanc
:hug:

I hope you are feeling better Kim and that you migraines and rsd flares are gone. My thoughts and prayers are always with you. With love, Renee.

Hi everyone. Well, I still have the migraine. Okay, I'm not sure if it the same migraine or if it has been a series of migraines. My head has hurt the entire time but the severity of the pain and aura symptoms has fluctuated throughout the two weeks.

I am going to see my GP tomorrow. Any ideas?

Well Kim I guess I couldn't help so I removed the post. I was only trying to help. I'm sorry! I wish you the best with the migraines and hope you have minimal pain.
Another brother in pain.

Hi Kim,

Yikes, I'm late on this.. so sorry hon. A near two week migraine, yes I think it is time to see your doc and get some relief of some sort if possible. So much of what the others have said is true. Don't just suddenly quit caffeine for sure. Caffeine is used frequently for treatment. My step daughter suffers from migraines and I will have her grab a soda or two, but it sounds like you are beyond that.

I did a couple of searches for new treatments and maybe you will find something helpful here for your apt tomorrow.

The Future of Migraine Therapy http://www.webmd.com/migraines-heada...graine-therapy

FDA Approves New Magnet Device to Treat Migraines http://www.webmd.com/migraines-heada...reat-migraines

Also I thought of Botox. I hear it's good for migraines and bonus (or would be for me at my age) you can simultaneously smooth out wrinkles. Again I have no idea how old you are so I mean no harm, :wink:

And then there's this. I thought of you Nanc. I know this might be too radical for anyone and I'm not sure I could do it, but given enough pain.. maybe. This seems to be how they are treating all kinds of pain hu?

Electric New Treatment Offers Hope For Migraine Sufferers http://newyork.cbslocal.com/2013/10/...ine-sufferers/

Kim, I sure hope your able to get some relief. :hug:

Hi Kim,

I don't have any really useful ideas on your GP appointment to offer :rolleyes: but just wanted to wish you luck and hope to goodness they can get you some relief.

Whatever you do, don't let them fob you off, this is a long time to have a normal headache, let alone a migraine. You must be exhausted.

I have my fingers crossed (not my toes lol, they are very burny at the moment - I blame this air pollution!).

Let us know how you get on x

Bram :hug:

My info about coffee & rsd/crps
 

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 :mad: 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!

:grouphug:

KimA

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

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 :p

As I've said to our young Vrae, you are not superwoman. Not quite :rolleyes:. 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 :hug: 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 :D:p:winky::)

Bram :hug:

Caffeine Intake
 

@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! :hug:

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
:hug:

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!

:grouphug:

KimA