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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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#1 | ||
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Hi peeps,
Sorry I haven't been around much lately. I thought I would give you a wee update to explain why. I apologise if I am repeating anything I already posted. I previously mentioned that I have been having migraines every day. I have been to my GP a few times and they (I saw 2 different ones) suggested various things. First, I tried sumatriptan. It didn't help. I phoned the doctor and he suggested a few days of ibuprofen at the maximum OTC dosage. Those of you who have migraines will not be surprised to learn that did not work at all. I knew it wouldn't help but I gave it a go. I saw the doctor again and he gave me beta blockers (propanolol). Now, that did help to reduce the severity of the migraines but it didn't stop them. I went back and saw a different GP in the practice. She suggested that a good night's sleep might help break the cycle. (Does anyone remember what sleep is?) She suggested sleeping pills. I had never taken sleeping pills before and honestly hated the idea. But migraines really suck so I agreed to try it. The first night I took one sleeping pill and it turned out that my pain was stronger than one pill, so I woke up through the night. The next night I took two (as instructed). As far as I can remember, I did sleep through the night. Wahey! It wasn't like a normal night of sleep though. I didn't wake up feeling rested and refreshed. I woke up tired and groggy. I suppose that may be normal with sleeping pills. I don't plan to take them again though. The next day I had...yes...another migraine. It was a fairly painful one too. I have had a migraine every day since 20 March and it is getting very old. I get migraines with aura for bonus fun. ![]() On my last GP visit, the doctor gave me a prescription for pizotifen (pizotyline in the US, I think). This is taken daily to prevent migraines. I used to take it several years ago and found it helpful. It caused extreme drowsiness at first (my lost weekend) but I was able to adjust to it well. So, yesterday I started taking that again. Fingers crossed. In between my trips to the GP, I also saw a pain specialist. He gave me Cymbalta for the NP pain. I am currently trying to go from 30mg (no problem) to 60mg (horrible). So, with the Cymbalta, starting the pizotifen again and the migraines, I am super groggy. I am not looking forward to going back to work and having people ask me what I did on my holiday. Now, I work with lovely, intelligent people; they really are terrific. But I think to anyone without a chronic illness the true story of what I am doing on holiday will sound like 'I spent my holiday off my face on prescription drugs'. Not cool, dude, not cool. Honestly, I think I underestimate them. The people are work with are genuinely fantastic. But still, I think I'll opt for something vague. KimA |
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"Thanks for this!" says: | eevo61 (05-07-2014), PamelaJune (05-07-2014) |
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#2 | ||
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Senior Member
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Kim, you do make me laugh, even tripped off your little face on prescription med combinations that would make a monkey blush
![]() Just take things easy and i have everything non-painful crossed that this new drug works again for you to get rid of most if not all of those migraines. Now that would be worth a lost weekend.... As for the people at work, make up something wonderfully weirdly vague for them so that they walk away looking confused, and have to spend the next half hour hanging around the water cooler asking other people if they knew what you were on about. Haha. Throw in a celebrity hot guy's name to spice things up, mention Cristal champagne, and leave the details hanging... Maybe a hearty sigh and a scribbled phone number on a crumpled bit of paper to whet their appetites. Weird it up though. Wouldn't want them taking you for granted ![]() Take care of yourself girl. Go careful until your body accepts the meds and allows you down off your little pink cloud ![]() Bram x
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CRPS started in left knee after op in Aug. 2011 Spread to entire left leg and foot, left arm, right foot. Coeliac since 2007. Patella femoral arthritis both knees. Keep smiling! . |
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"Thanks for this!" says: |
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#3 | |||
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Junior Member
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I can truly sympathize. I've had migraines with aura since puberty but went through a time about 6 years ago where I went nearly 3 straight months with a migraine every day. I literally didn't leave the basement unless it was to see a doctor or at night. I'd go days without sleep at a time because I was in too much pain to sleep, then I'd collapse from exhaustion and start again. Found my trigger and haven't looked back. I can live with my 2-5 a month now.
I hope you find your answer soon. I'm sure a doctor (or you) have thought of this but remember to check any changes in medication that happened when or near the time the increase in migraines began. Even if it was an increase in frequency before they became daily. That was the key for me, doctors kept looking at when they became daily or near daily instead of at the time they began to increase.
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"...it needs to be about 20% cooler." Celiac DX Dec 2012; over 30 years symptoms to DX CRPS DX March 2014; 5 years, 1 month from first symptom to DX |
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#4 | ||
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Thanks for your reply. All of my recent medication changes were made after the migraine marathon started. Prior to that, my migraines were the same as always. I did go on and off nortriptyline (I tried it for the NP pain but I couldn't tolerate it). That was not very close in time to the migraines starting though.
Annoyingly, one of my migraine triggers is disruption to my normal sleep patterns. Of course, since developing CRPS I don't sleep properly. I always have migraines for a couple/few days before my 'aunt' arrives (sorry guys). When my aunt shows up, she scares the migraines away but in March the migraines didn't stop as expected. Since then, my aunt came and went again and the migraines stayed. I'm trying to think of what changed. I'm thinking of getting an eye exam. Of course I don't think my vision worsened suddenly but I suppose an eye exam couldn't hurt. Quote:
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"Thanks for this!" says: | eevo61 (05-07-2014) |
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#5 | |||
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Quote:
![]() It's hurts a lot,so the first couple times after the rsd diagnosis i was thinking on not getting it because of the pain but pills don't work in any sense for me,so obviously my next option without doubt was toridol injection,which I tried before also in combination with zofran for nauseas, the effects last a while,maybe the first couple times you might need few but after pain gets control ,you get to the point where you might need maybe 3-4 injections through the whole year,the pain don't last that long just to make that clear,hurts a while during the application,hope that is available in London and hope that help you too,good luck and also try music to relax your senses,Tibetan singing bowls are nice,just imagine the water sound softly running and the bowls gentle sound ![]() ![]() Ps I rather had that injection that is a pain in the butt ![]() ![]() ![]() ![]()
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. Last edited by eevo61; 05-07-2014 at 01:48 PM. Reason: Added caracters and corrected England for London same country but different place,sorry! |
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"Thanks for this!" says: | anon6715 (05-07-2014) |
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#6 | |||
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Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
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Kim,
When I read that sumatriptan didn't work, I was going to encourage you not to give up on triptans; like some other classes of meds, when one doesn't work often another will. (Sumatriptan didn't do a thing for my migraines either, but rizatriptan works every time as long as I don't wait too long.) HOWEVER... when I got down to where you said you started on Cymbalta, my heart sank a little. Alas, it's not advisable to take triptans with antidepressants due to the possibility of serotonin syndrome. triptans and antidepressants An eye exam might not be a bad idea. As to what changed—spending more than usual time at the computer? computer migraine? computer headache? Doc
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Dr. Zachary Smith Oh, the pain... THE PAIN... Dr. Smith is NOT a medical doctor. He was a character from LOST IN SPACE. All opinions expressed are my own. For medical advice/opinion, consult your doctor. |
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#7 | ||
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Newly Joined
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Quote:
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#8 | |||
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Another sweet name, I am baked.
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"Thanks for this!" says: | eevo61 (05-10-2014) |
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#9 | |||
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Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
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Can't deny I'm curious/wondering about that one.
![]() Baked, Welcome to NT, but see my comment about serotonin syndrome. Combining triptans with antidepressants is extremely risky—as in potentially life-threatening. ![]() Doc
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Dr. Zachary Smith Oh, the pain... THE PAIN... Dr. Smith is NOT a medical doctor. He was a character from LOST IN SPACE. All opinions expressed are my own. For medical advice/opinion, consult your doctor. |
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"Thanks for this!" says: | eevo61 (05-10-2014) |
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