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 04-05-2009, 08:45 AM #21
klb1553 klb1553 is offline
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Default Inderal

Quote:
Originally Posted by MominPainRSD View Post
I'm SO glad I read this......I was about to switch to Topamax. I currently take Inderol (Propanerol or something like that). I have been taking it for years for migraines long before RSD. The problem is I think it is affecting my blood pressure negatively now that I have RSD. It is terribly low at times (80/40) and I feel awful and have NO energy.

I will say, for migraines, it worked very well for me. I went from getting 3-4 a week down to 1-2 a month. I take Maxalt PRN when one does come on. Thanks for the info about the hair loss. The RSD causes enough of that in me.....I don't need any more from meds!!!
Inderal is a beta-blocker Rx to lower blood pressure among patients with hypertension (that's not it's only use). Are your physicians aware of it's effect on your BP?
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Old 04-05-2009, 06:35 PM #22
MominPainRSD MominPainRSD is offline
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Quote:
Originally Posted by klb1553 View Post
Inderal is a beta-blocker Rx to lower blood pressure among patients with hypertension (that's not it's only use). Are your physicians aware of it's effect on your BP?
Hi!!! Actually, they took me OFF Inderol and put me ON Topomax about a month ago (trying to do double duty--migraines/RSD). I had a TERRIBLE reaction to it. My BP doubled and my resting heart rate was around 106. I had a splitting headache the whole time, so I had to come off of it. I literally felt like I was crawling out of my skin.

I was taking the Inderol for migraines, not RSD. Having had both, I would much rather have low blood pressure than high. It was scary. Now, I am on neither med......I'm going to give it a try to see if I can keep my migraines at bay without it. My BP is at least stable at 125/79, pulse 81 resting. Not great but better than it was.

I was sorry the Topomax didn't work. I may try it again down the road. I was in a TERRIBLE spread and flare when I was on it. Thanks for inquiring!!!!
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Old 04-05-2009, 06:45 PM #23
SandyRI SandyRI is offline
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Mom - how are you? Did you have your consultation with the new PM docs yet? You haven't posted much lately. Please write back and let us know what's up. I'm thinking of you...

Sandy
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"Thanks for this!" says:
MominPainRSD (04-05-2009)
Old 04-05-2009, 06:55 PM #24
MominPainRSD MominPainRSD is offline
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Oh, honey......you are so sweet!!! I have layed low since my sweet pet rat died (3 weeks ago today). I hit a MAJOR depression......I could NOT collect myself. They put me on some STRONG antidepressants this past week and I'm feeling better now.

My appt. with Dr. Lubenow is on Wednesday. It will be a 2 1/2 hour drive for me one way......I'm worried about that (hubby is driving). 5 hours in the car in one day. YIKES!! I am so hopeful he'll have something he can do for me. I tremor SO badly sometimes now I can barely keep my balance.

Anyway, I've missed you all and am happy to be back. Thanks for thinking of me!!! Love to all!!
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Old 04-05-2009, 08:27 PM #25
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kalimae

this is mostly the reason that i dont take alot of antiseizure meds because they have the tendencey to raise cailcum and i have horrible problems with my kidneys and kidney stones. so anything that i can do not to have the attacks. helps. with the meds my calcum would be high with out the meds. last week my blood work was clean and no high calicum or protein in urine so that is great i would talk with your doctor about it. there is very little warning about this side effect my uro is the one that told me about it ...

glad that i could be of some help LOL
carrie
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hope this finds all in less pain
.



rsd DX 99 had since 98 full body and organ involement,fibro ,pelvic pain ,etc,,,,,,




please check out our website to help bring awareness to RSD!


.
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Old 04-05-2009, 09:05 PM #26
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Default Thank you

I had the same problem. Thank you for hopefully helping others to save there hair.
Quote:
Originally Posted by Joselita View Post
Hey Everyone.

I just wanted to let the folks that take Topamax know about a potential side effect. The “technical term” my doctor used for it is 'medicinal alopecia', and he said that it affects 3% of people taking the medication. And....yep! You guessed it; I am in that 3%.

In most cases, it is reversable and takes about 5 months for the hair loss to stop once you get off of the medication. I am glad that this was the case for me. I am going to be trying a different medication (and sorry....can’t remember the name, cant read this writing on the script, and will probably get it filled this weekend or Monday at the latest) that he said is “an oldy but a goody” and that people who responded well to Topamax usually respond well to this medication too. I responded well to Topamax, I just couldn’t handle having hand fulls of my hair come out all of the time.

So, I just wanted to let everyone know, that if you are taking Topamax and you start having LOTS of hair start falling out....you aren’t crazy, and it might not be the RSD causing it. Go talk to your doc and let him know. I have been taking Topamax for quite a while now (matter of years), but this losing hair thing is something that wasn’t going on at all, and then started ...and got worse pretty quickly seemingly out of the blue.

If anyone is curious, I will let you know how this new med works for me (and what it’s name is. LOL).

Take care.....and I hope everyone is having an OK time through all of these weather changes going on.


Jose
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Old 07-07-2009, 02:07 PM #27
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Default Losing my hair too...but don't skip on the topamax

I've had a terrible time with hair loss which I think is caused by the Topamax. (Neither my GP or Derma can find any other cause.) It started about 3 months after I started the medication with dandruff like symptoms, itchy scalp etc. I've lost about 1/2 my hair now and am coming off the Topamax, but the really interesting thing is that the migraines aren't coming back. I've been on Topamax for about 8 months. I hope my hair starts to come back in soon and that the migraines stay away. Supposedly only a small percentage lose their hair from this drug, so if you're prescribed it you should definitely try it because it works really well for so many.



Quote:
Originally Posted by Joselita View Post
Hey Everyone.

I just wanted to let the folks that take Topamax know about a potential side effect. The “technical term” my doctor used for it is 'medicinal alopecia', and he said that it affects 3% of people taking the medication. And....yep! You guessed it; I am in that 3%.

In most cases, it is reversable and takes about 5 months for the hair loss to stop once you get off of the medication. I am glad that this was the case for me. I am going to be trying a different medication (and sorry....can’t remember the name, cant read this writing on the script, and will probably get it filled this weekend or Monday at the latest) that he said is “an oldy but a goody” and that people who responded well to Topamax usually respond well to this medication too. I responded well to Topamax, I just couldn’t handle having hand fulls of my hair come out all of the time.

So, I just wanted to let everyone know, that if you are taking Topamax and you start having LOTS of hair start falling out....you aren’t crazy, and it might not be the RSD causing it. Go talk to your doc and let him know. I have been taking Topamax for quite a while now (matter of years), but this losing hair thing is something that wasn’t going on at all, and then started ...and got worse pretty quickly seemingly out of the blue.

If anyone is curious, I will let you know how this new med works for me (and what it’s name is. LOL).

Take care.....and I hope everyone is having an OK time through all of these weather changes going on.


Jose
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Old 12-08-2011, 05:15 PM #28
ksusanc ksusanc is offline
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Default Your New Meds

Quote:
Originally Posted by Joselita View Post
Hey Everyone.

I just wanted to let the folks that take Topamax know about a potential side effect. The “technical term” my doctor used for it is 'medicinal alopecia', and he said that it affects 3% of people taking the medication. And....yep! You guessed it; I am in that 3%.

In most cases, it is reversable and takes about 5 months for the hair loss to stop once you get off of the medication. I am glad that this was the case for me. I am going to be trying a different medication (and sorry....can’t remember the name, cant read this writing on the script, and will probably get it filled this weekend or Monday at the latest) that he said is “an oldy but a goody” and that people who responded well to Topamax usually respond well to this medication too. I responded well to Topamax, I just couldn’t handle having hand fulls of my hair come out all of the time.

So, I just wanted to let everyone know, that if you are taking Topamax and you start having LOTS of hair start falling out....you aren’t crazy, and it might not be the RSD causing it. Go talk to your doc and let him know. I have been taking Topamax for quite a while now (matter of years), but this losing hair thing is something that wasn’t going on at all, and then started ...and got worse pretty quickly seemingly out of the blue.

If anyone is curious, I will let you know how this new med works for me (and what it’s name is. LOL).

Take care.....and I hope everyone is having an OK time through all of these weather changes going on.


Jose
Hi,
I wanted to know what the name of your new meds were and if they were working, and how you are doing on your hair loss problem?
Thanks, Susan
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Old 01-27-2012, 03:23 PM #29
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I just started taking Topamax and I have had a few minor side effects like carbonated beverages taste funny, i have also had some minor tingling. But I have also been migraine free for 10 days. This is the first time in 20 years I have been migraine free in 20 years. Side effects are different for EVERYONE. just because it says it might do something doesn't mean it is gonna happen to you. You need to talk to your doctor before you decide what to take not base it on a forum. that's my opinion. Topamax has been the best thing for me. I have tried many different meds and this has saved my life.
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Old 06-22-2015, 11:41 AM #30
Vanilla74 Vanilla74 is offline
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Default Topamax and hair loss

Can anyone pls tell me how long it took your hair to stop falling excessively after stopping Topamax? I am desperate here. Thanks.
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