Yikes.....the only meds I am on right now are Cymbalta and Zanaflex and Klonopin and Seroquel (the last three I take in the evening or before sleep). I'm going to give it a few more days of being off the Topomax of assuming the BP is from the Cymbalta. That would suck, because I have to think it is helping with the pain (please??? maybe???? just a little???).

Ironically, my feet are not burning as badly today but the REST of me is. I feel badly sunburned all over (NOT as bad as the feet thing usually is). My head hurts ALL the time. I'm sick of meds. I'm ready to come off of all of them. I don't believe anything works.

Oh, and I don't take ANY pain meds regularly. I only take them when I get desperate. I thank you all for your suggestions. We'll keep some of the stuff you suggested in the car along with some bags just in case they don't work! (yuck).

Mom,
The symptoms that you describe (heart rate and dizziness, nausea) are more connected to decreased BP/decreased ability for the body to correctly regulate changes when you move as opposed to high blood pressure. High pressures would show up as more of a pounding headache; otherwise hypertension is called a "silent killer" as there really aren't signs that you see before there is damage to the end organs. For you to have symptoms from a high pressure, it would have to be really high (like "having a stroke" high). The medications you describe are much more likely to give you something called a "orthostatic hypotension" or "postural hypotension." You may ask you MD to do something called orthostatic blood pressures on you when you have symptoms or if you can induce symptoms (stand up really fast, turn your head fast, etc) to check for this.
Hope this helps,
Lori Lee

Zanaflex is related to clonidine...and they both reduce blood pressures. (about 30% of Zanaflex users get lowered pressure)
http://www.drugs.com/pdr/zanaflex.html

If blood pressure is a concern, I suggest you invest in a blood pressure cuff...the manual ones are only about $20.

Motion sickness/dizziness may be independent of blood pressure. It may be central in the brain, connected to the
semi-circular canals of the inner ear.

High blood pressure does not give symptoms typically unless very high. Some people who have high blood pressure can feel a pressure in the chest when it goes up, but that is very selective. Fluctuations can be felt, and the drops are more obvious than the rises in general.

Dear Mominpain,

I just posted the following information for Dubious and thought I would post it here for you too in case you missed it. Please excuse my post if you have read it. I thought of you too when I read the following excerpt from an article published in the latest issue of the Pain Monitor.


I believe it is possible to break this pain cycle, the trick is in finding the right combination of treatments to interrupt the pain signals to give you a break. What this author is suggesting here is not as quick as just taking a pain pill, not that most of the pain pills even touch most RDS pain, but in the long run if one can learn how to retrain your brain it is very beneficial in managing rsd.

I hope you have been able to find some relief.

MsL

Hi,

I had a terrible time with HBP until I started clonidine. I was initially on .2 mg (.1 mg pill in the morning and in the evening) but my BP was still pretty volatile. So my PM doc switched me to a clonidine patch - .2 mg Catapres. I also take Topamax, Cymbalta, Percocet, lidoderrm patches on my shoudler and neck, and Soma. I've added calcium, vitamin C, cranberry juice, tums, and other supplements to try to stay healthy and offset the affects of the drugs and the RSD on my body.

I've had 4 SGB so far. I don't feel like my symptoms are so out of control any more, but I am far from better. I think the combo of PT, meds and blocks and the constant support of my husband and family is slowly helping me.

I still burn like crazy. And headaches are a real problem. It's easier for me to drive in a car if I am the driver in my little Civic. Bumpy roads when my husband is driving in his big SUV are just a nightmare!! I just don't get in his car anymore if I can help it.

I am really sorry that you are getting sicker. Go to the very best doctor you can. I did not start getting better until I got out of RI to Boston. My RI doctor went to Harvard medical school, and he messed me up for months by referring me to a CHIROPRACTOR!!! The Cleveland Clinic has a great rep - go for it! By getting the right mix like I did hopefully you will also start to feel like you are turning the corner.

I think the weather helps, too. Our snow is almost gone- how cool is that!!!

Good luck to you, Sandy

mom
i also think that its hypotension not hyper for the pure fact that moving makes you dizzy etc... i have been on the zanaflex since 03 and it does still cause my BP to drop and mine is always way too low.. and this will cause headaches black spots in vision ...i would talk with the doctor about it ..

love ya tons

carrie

I finally have a moment to reply to all of this. First, my beloved (and I do mean BELOVED) pet rat had a seizure yesterday. I held her in my hands wrapped in a towel for three hours convinced she was dying. She was basically lifeless, but would wake up only occasionally for me to tell her I was there and then would fall unconscious again. I called the vet, concerned she was in pain (she began twitching), and she suddenly woke up and acted normal. I was elated.......for a while.

She is clearly deteriorating quickly. She is not herself, not eating, pretty much catatonic, clearly in pain, and falls over when she tries to clean herself. I have been nursing her all day nonstop. Our vet is out of town but will be back tomorrow and we will likely take her in to be put to sleep. She's lived a long life and has been my faithful companion (her cage is by my bed). There are no words to express how sad I feel.

I am finally getting the Topomax out of my system. Hooray!!! The tremors have stopped!!! My head still hurts ALL the time but my pain otherwise has been manageable. I do have a blood pressure machine and just took it and it is 113/72, pulse 81 (and I have been lying down still for at least an hour). So, I am happy that my blood pressure is coming down to normal (for me) but I do not understand my pulse being so high. I can literally feel my heart beating out of my chest sometimes (and have been having chest pains for two days......probably anxiety).

Anyway, they need to get my meds straigtened out because I am a crying emotional wreck (even before Milk Dud's illness). This disease feels so isolating to me. I can't explain it to people (why I walk so slowly or cringe in pain so often) because it just takes too long and they REALLY don't care or want that much information. It REALLY gets me when none of the doctors or nurses or pharmacists have heard of it (or counselors or psychiatrists, etc......).

I hope you are all doing well. I just wanted to touch base since I've not been on in I don't know how long???? I'll write when I can.

All things bright and beautiful,All creatures great and small,All things wise and wonderful,The Lord God made them all. (Cecil F. Alexander)

I'm SO sorry to hear about your beloved pet rat having a stroke, MomInPain ! I know you will make the best decision for him and that you have looked after him really well so don't beat yourself up about it too much - it's NOT your fault!!!!! I know how horrible it is when we have to have our beloved pets put to sleep ... I was SO bad when our Springer Spaniel had to be put to sleep and my mum had to go and get another puppy straight away because she couldn't cope without a dog in her life! My hamster died in my arms also and she had a stroke and it was SO hard to watch - I was only about 10 at the time I think. Thinking about you and please let us know how everything goes with your rat!!

I'm SO glad to hear that the spasms have stopped now ... that is great news!! I really hope that you start feeling better soon and you are in my thoughts and prayers! If you ever need to talk, please feel free to PM me!

Sorry about your rat. Bummer.

I can totally empathize with the feeling of isolation that you are experiencing. I do not know anyone else that has RSD. The only people that I have to share info with are here and on one other board that I visit. I do have my PT, who has had a few RSD patients and has taken a sincere interest in my case, that I see 2X a week. But otherwise I don't have anyone to really talk to that understands.

I am really sorry that you are going through so much all at ounce. Can you get to the Cleveland Clinic this week? Getting into a more experienced practice made a difference for me. (I'm still screwed - the RSD had spread by the time I made to Boston). But I'm better off than I would be if I had never gone there.

You are in my thoughts and prayers, please take care of yourself.

XOXOXO Sandy

Hi I am so sorry you are facing all this. Also about your pet. Just to let you know I saw Dr Stanton Hicks and also Dr Mckale at CC plus did their day program. If you have any ?'s let me know. I also know how this condition is so lonely. If you want an email buddy I am here. Hang in there