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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Old 06-19-2007, 08:01 AM #1
CZZ74 CZZ74 is offline
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Default Need some help, swollen tongue

Hi,, Im having some pretty serious problems with my tongue swelling . I wanted to see if anyone else is having this problem. I am having ketamine booster infusions reguarly , which are helping a great deal, I have full body RSD. I have also had the coma treatment. Orginally I thought this was from the tubes, but now i think it must be something else as it has been 7 weeks . Has anyone else had this reaction from ketamine infusion or simply from there RSD. Thanks so much.CZ
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Old 06-19-2007, 08:54 AM #2
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Hi ,
Tongue swelling is usually from an allergy but if you are not new to Ketamine it would be unusual I think.
I have had many ketamine infusions and never had a swollen tongue (also have full body) You haven't eaten or drank something unusual?
Where did you have your Coma treatment? Was it successful?
Hope it is resolving for you by now
Take care
Tayla
Please watch carefully that it is not becoming excessive as you may have trouble with your airway.If it is swelling more you should attend an emergency room.

Last edited by tayla4me; 06-19-2007 at 08:56 AM. Reason: addit
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Old 06-19-2007, 06:11 PM #3
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Heya

do you find that your mouth and tongue burn as well? I know that for me the ketamine does make my mouth worse - but that's because I take it 3 - 4 times a day in an oral solution. yuck.

Have you wrong the consultant and asked?

Hope it improves,

Love

Frogga xxxxxxxxxxxx
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Old 06-22-2007, 07:22 AM #4
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Default Thanks for the help, I just came back from booster

Hi, thanks for the help. I just came back from booster, it appears to be dehydration. I still have temperature problems since the coma. this apparently is part of it and I do alot of sweating.
I had the coma treatment in Germany- for me it was very successful. I had full body rsd was close to bed ridden,up maybe two hours a day on 28 meds . the pain was only low enough 6-7 to be up two hours a day. the rest of the time I was in bed on multiple heating devices. No quallity. The coma completely eliminated my pain ,all level 9 ,from my head to the top of my legs. MY legs , right leg, was my orginal injury site. So the success is incredible. My legs are improving with each booster I have had two followups so far. Now I go in a month. Of course I have had infusions all along, but they only previously lasted 3-4-5 weeks in reducing the pain.
So things are much better, I am still weak and have to limit activity or as usual it brings up the pain, but only in legs and feet. I am taking short walks and going to a senior pool therapy class at the Y. Im the youngest in the pool everyone else is 85. But it is the right speed for me right now. I am being extremely careful not to get hurt as it could all come back. For me I had no choice left. It was worth it.Im slowly trying to belivie I will have some sort of life back. I feel very lucky I have lost 4 years and hope that I am begining a new part of my life. Iknow it will never be what it was before at that speed, but I am so happy for what I do have back. Each morning I wake up- I take an inventory like I did before the coma " it was like how bad a day will this be" I do the same now but its like "Wow" I can handle this .Im going slowly and praying it holds for me. Good luck to you with your continued boosters. I do belivie Ketamine is the answer for many of us. I wish it was for all. Take care and thanks again,, CZ
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Old 06-22-2007, 07:26 AM #5
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Default Frogga,Burning

Frogga, it burned in the begining but now just swells. I am really watching it and drinking tons of water. I think the florida heat, the sweats and yes I am trying to give up my heating pads- all contribute. My doctor seems to feel as if this is all part of coma aftermath. Good luck to you and thank you for your response. Sincerely, CZ
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Old 06-22-2007, 11:48 AM #6
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Hi C,

Have you tried a water pick? Hugs, Roz
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Old 06-22-2007, 01:52 PM #7
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Default Hi

I'm in the PN mess but also have Sjogren's S i also found i have to
drink alot of water although with the Sjogren's there never seems
to be enough water and a water pik does help. So much luck Sue
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Old 06-22-2007, 04:26 PM #8
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Default Water Pik, great idea

Thank you Hi, I do have a water pik and will use it. And yes I will drink more water - it could be dental? Is that why you think the water pik will help. . Thank you,so much for writing and your help I want to stop stressing over it.You all have helped alot. Im off to try the water pik. thanks again. CZ

Last edited by CZZ74; 06-23-2007 at 04:38 AM. Reason: correction
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Old 06-22-2007, 11:14 PM #9
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I also had a thought to allergies,
My Mom started a sea food sensitivity and it made her tounge swell and burn. Later, if she ate it again she got some sore spots on her forearm,scabing.
Did you try the benedryl with a histimine action?
Dianne
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