I know how you feel i have had esophageal spasms for years now. Mine has lasted for weeks at a time and the pain is unbearable. Wish they could find out what causes it and find something that really works in treating the symptoms. Mine started when i was about 20 years old and now i am 51. I have suffered a lot as you know what i mean. I take Zoloft, Flexeril and pain meds. Praying they will soon come up with a cure :) .
Addi,
Sorry for the garbled post and numerous typos. Some days are just better than others. Alex had diaphragm spasms that sound remarkably similar to your spasms. She found relief with fast acting Ativan (I think).
Thank you for the hugs and sending the same back to you.
Ren
Lol, JJ! I wish I could still be on that Harley, cruising down a long county road with no destination in mind...just enjoying the wind in my face, bugs in my teeth, foot loose and care free! :) I truly miss that. So, if that is what you see when you see my picture, then that makes me happy!
LMAO about the clown car! I got a visual of that....you veering all over the road, yelling out your window to me! That would be so cool because that would mean I finally made it to Australia on that ride! :)
Thanks for making me smile, JJ. I really needed it and it came at just the right time.
Hugs,
Addi
Ren - I know you have been going through your own little HE LL and i think of you often, too. Red to red! :)
I will try to send a note to Alex to find out about what you are saying. I must have missed the post or I have forgotten it. :/ Thanks for that, in any case.
Gentle hugs to you,
Addi
Addi,
Alex (HVAC) posted on her esophageal spasms. Her PCP gave her instant dissolving Ativan I think. She has some very similar symptoms as yours. She has trouble breathing and the pain is excruciating. I helped talk her through one that lasted more than 2 hours.
It brought back the old Lamaze breathing. Send a note to Alex or find the thread the old thread..I looked but couldn't find it. It's late and I'm in pain with a lovely hug from my friend the Hug.
At any rate you need to get control of the pain so your quality of life improves. As for the ketamine infusion, I don't think they will he;p with the spasms because the reason to use it i to train the brain and the nerve pathways to make new and different connections. It can't hurt to ask . It's less invasive that a pump.It also wouldn't increase your Baclofen which might aid to the weakness and issues wot your epiglottis not closing promptly when you swallow.
Let me know if I can help in any way. You're always in my thoughts, Red, LOL
Ren
Thank you, Addi! I'll keep you in my thots and prayers for the LA trip! Here's wishing answers to us all and SOON!
Addi,
Everytime i see your photo, i picture you on the back of a Harley flying down the hwy, wind in your hair, bugs in your teeth, foot loose and care FREE!
If you ever think of me, i'll be in the little clown car vearing all over the road, yelling at you to hold on!
HUGS...............JJ
Thank you, Cheesy. Your thoughts and hugs give me strength and are accepted with open arms. :) I do appreciate your email. Everyones responses mean so much to me and seem to be helping me find that inner strength I was losing grasp on. I can do this, I can do this, I can do this. I might need some reminding after our trip to LA though! lol
Hugs to you and prayers that you get your answers very soon!
Addi
Good morning, ren, and Happy Mother's Day to you. I recall you posting before about the ketamine infusions and how well they are helping you. I did a search on it and it looks to be a wonderful answer for chronic pain sufferers. What exactly does it help you with? Do you happen to know if it has shown success in treatment for muscle spasm, too? I couldn't find anything on that.
Unless i can find anything else to try, I am going to push for the pump tomorrow. I think I gave the ES injection a noble effort. As far as I am concerned, this didn't help even a little, so I don't see the need to have another one done and just prolong the pain I am experiencing.
I remember you having severe pain issues, too. I am so very happy that you have found relief. I do like and trust my new pain doctor. He explains everything he talks to me about and listens with both ears when I talk to him. My mom goes to every doc appointment I have. He even makes sure everything is understandable to her. He asks us both if we have any questions about anything he has discussed with us. He never rushes us, either.
My neuro referred me to pain management specifically for the pump. He has talked to us about the pump, but he wanted to try the ES injections first. He really wanted me to have at least two, but I have decided not to proceed with the second one. I do not feel that the first one did anything for me and I don't want to wait any longer for relief. I don't want any more ER visits for the damn spasms.
I appreciate the reminder on not making quick decisions. The toe amputation made me laugh...but, i can so relate to what you are saying there. I think this was why I went ahead and tried the ES injections. I was looking for, and hoping hard for, a quick fix. I feel like I should have just gone with what my neuro prescribed. I do feel like it really the answer for me. Each ER visit I have had for these spasms, morphine has been given to me with good results. The Baclofen I already knew was helpful to me. The pump will be morphine and Baclofen, so....it makes sense to proceed with it.
I will be making that Monday morning call, but it will be on the road. Monday is the day my daughter will be seen by the neurosurgeon who specializes in Chiari, down at Children's Hospital in LA. Please pray for a good outcome with this appointment.
Ess, Happy Mother's Day to you, too. Whether you have kids or not, doesn't matter. :)
I am on Lyrica, too. 600mg a day. This does help with my nerve pain quite adequately. I hope you get good results with it, as well, no matter what mg dosage you end up having. And, I hope the Lyrica helps in your leg stiffness, too.
The side effects from the different cocktails you have tried sound perfectly wonderful. Not!! I do understand about that, as well.
Yes, I am on narcotics. Right now, I am taking vicodin 10/325mg 4x a day....every 6 hours. I also have vicodin 10/500mg on hand but do not see a difference as far as pain relief between the two, so I am sticking with the 10-325 mg pill. I have told my doctors that I don't want to step up on the narco staircase.
So, as far as pain relief, I am on a few different meds. The Vicodin mentioned above, plus Lyrica, 600mg a day for nerve pain. Diclofenac Sodium, 75mg 3x a day for back and hip pain. Orphenadrine Citrate 100mg twice daily for muscle spasms. Sertraline 25mg at night and Doxepin 40mg at night for pain. Baclofen, 20mg 3x a day for muscle spasms and spasticity.
Hello!! I just fell asleep right in the middle of the Baclofen sentence. lol. A little 3 hour nap. :) I have been doing that for the last couple of days. It is like unbearable fatigue hits me in the middle of my day. I woke up this morning at about 5:30 and couldn't get back to sleep.
As far as do the narcos do me any good...yes, they do. I know that the pain I am having right now would be much worse if I wasn't taking the Vicodin. I know this because the pain increases about an hour before I am due to take my next dose of it.
I will contact my neuro in the morning, too. He knows about the severe muscle spasms. He doesn't know about this last visit to the ER, but he does know about my previous visit to the ER because he is the one who sent me there. During my last visit with him, he set off muscle spasms in my neck and that was when he prescribed the pump for me.
He also put a stop to physical therapy until we get the spasms under control. He changed my vicodin from 10/500 to 10/325 because of my taking a lot of it and felt the acedimentafin (sp?) level needed to be reduced. He also had prescribed the Tramadol and Tylenol 3 before, with no better results and knows about the several morphine treatments I have had in the ER in the last several months.
I really do hope that the Lyrica ends up being the answer for your pain. And, I feel your strength, as well as ren's! If you guys can do this...get through it...and it looks like you have, then i can do it, too. I hope I still feel the strength tomorrow. I know that the drive to LA is going to be rough. Riding in the car really effects my neck in a bad way.
JJ, thank you so much! Yes, just hearing you all tell me to keep at it is giving me strength to go on. I don't know how, but it is helping. So thank you, thank you, thank you!
Big hugs to all of you,
Addi
Addi, I do not have words of wisdom for you (This is all so new to me) but I do have hugs and sympathy and empathy. I have the esophageal spasms, too. I don't know that I've had them quite as bad as you describe but I have had them take my breath away. So, you have my empathy, thots and hugs if they are at all helpful.
Addi,
I am not sure of anything I can say that will help you, but i really want you to KNOW that you can have my strength if it tops you up enough to keep on fighting, please keep on fighting!!!
HUGS..............JJ
You asked about my pain control now, and to answer fully I'd have to go through lots of unpleasant stories about diarrhea, constripation, headache from hell, and vomiting. How lovely on a Sunday morning in May.
So I'll just say that after months of awful side efffects from various meds and no pain relief, I am hoping that the new Lyrica will work. Can only increase by 75mg per week, which is agonizingly slow. At this point I'm just up to 150mg per day, and I do see improvement. When it starts to wear off I can sure tell, and that's when I go get an ice pack. Numbing it numbs the pain somewhat too. I can go up to 600 mg if needed, but I hope it won't get that far.
For the last couple of days my lower leg has felt quite stiff, though my foot is flexible and the muscles move, so maybe that's just a lesser version of neuropathic pain, but my walk is as weird as ever. Can't do a lot of that, but enough to get by.
You, on the other hand, also must take a lot of narcotics. Do they really do you any good? I know pain often takes a lot of experimentation and a cocktail of drugs to manage, and it doesn't sound as if your doctor is doing that job. Spasms are the neuro's job, specifically, so you do need to contact him or her first thing tomorrow too.
Sending you strength as well as hugs,
ess
Dear Addi,
I can absolutely relate to long term pain and how it affects someone!!!!!!!! ESss has had to endure the same pain for months now. You DO need to call pain management to get those esophageal spasms under control!!
If nothing else is going to work then perhaps the pump is the way to go. I am using the ketamine infusions with 2-3 week reprieve until the next 4 week infusion. Whatever you chose, just think it through. I was so desperate when I went to pain management I would have consented to toe amputation if it would stop the pain.
I understand your frustration and pain. Make that early morning call on Monday and get some relief . You've been through enough!!
Comforting, gentle hugs,
Ren
Ess-
I remember a post from you regarding the pain you have suffered with your ankle. I remember feeling so helpless in trying to give you support. You do get it...if I remember right, you were at that breaking point when you posted. Like I am now.
You are getting relief from your pain now?
I will call pain management doc first thing Monday morning. I did put it a call to him on Friday but he has a full day of medical procedures that day. I didn't hear back. I want to proceed with the Baclofen/Morphine pump now...like my neuro sent me there for.
Addi
I do understand about the pain. I of course have had lots of painful episodes in my life, but never before one lasting 5-plus months at such a high level. It is so wearing and exhausting, and it does suck the life out of one.
I'm sure you have it a lot worse. Your pain mgmt doc is not doing his job if he can't get this under better control. Keep calling and 'annoying' him till you get more relief. Call your neuro too. Those spasms are likely to quiet down soon, but meanwhile you need help. It is so discouraging that many meds have to be tapered up slowly so that even if they ultimately are helpful it takes weeks to get a decent result. But you have to keep screaming to whoever will listen. I do know it is unbearable for you, and you have put up with so much already.
I also know what it's like to feel so tired from the pain. From here, all I can do is give you encouragement and support. Keep hanging in there, keep posting, and call those doctors now.
ess
Cainer - Thank you for your response. I have never heard of mysoline so I looked it up. It is a similar drug to Gabapentin, from what I could tell. I stopped using Gabapentin last June and instead take Lyrica, 600mg a day. I take this for nerve pain. I also am on propranolol for tremors. I forget the mg, but take it twice daily. I am glad the mysoline helps you. :)
Ess - thank you so much for your post. It truly means a lot because I feel myself slipping in my fight. I am finding myself questioning my quality of life. I feel my body growing more tired each day. Sometimes I feel like I can't take much more of this. I have never in my life felt suicidal and have never understood or comprehended why or how people get to that point. Yet I am beginning to relate to assisted suicide. I HAD A HARD TIME EVEN WRITING THAT THOUGHT because it goes against everything I have ever believed. Yet, I sort of understand. It is hard to explain...but I have talked to my mother about feeling tired and losing my fight...or maybe my will to fight. I don't know. I think the bottom line is I am so done...so tired....so over with the pain I have been going through in the past several months. Ya know? And I don't like feeling this way. And I need people on my side...I think I need to pull from their strength.
MissL - I get that throat closing thing in my sleep, too. It is kinda freaky. Sleeping with my head elevated has helped with that (I have a hospital bed). I often feel something stuck in my throat. I went to a speech therapist last year for help with these issues and the choking on food and liquid. She did teach me about tucking the chin down, which is helpful.
Using a straw helps even more because with a straw you don't have to tip your head back when getting a drink. Less choking. She told me basically that my flapper thing (can't remember technical language) isn't working as it should...which allows food and liquid to pass through in the throat area and "go down the wrong pipe". It sounds like maybe you might be having issues there. Maybe seeing a speech therapist would be something to consider. I found it very helpful.
I do not have acid reflux. I have done a barum (sp?) swallow and no problems were found. I went to an ENT and he stuck the camera thing down my nose and throat and didn't see anything wrong. My pcp was the one who told me it didn't seem to be gasto related, due to regular test results.
This last incident scared me more than ever before. I knew it wasn't my heart. I knew I was having muscle spasms. But I had never had the pain be so severe as this was and for the pain to shoot into my head had never happened before. This incident has left my body so weak and sore. Even now, I hurt to take a breath.
I need for this pain to be controlled...and soon. I have gotten used to the nerve pain. I have been dealing with that for six years now. The Lyrica and antidepressants keep that under control to a degree. It doesn't take it away. So, I am used to the nerve pain to sit around a pain level of five or six. That has become my norm. Like I said, I have grown used to this and can live with and function around it.
But these muscle spasms? No, I can't work around them. I have gotten them in my pelvic floor, which sent me to the ER, morphine administered for relief. I have gotten them in my neck and back, again with the ER and morphine. I get them in my rib area, like around my lungs...ER and morphine. I take 60mg of Baclofen a day and 100 mg generic Norflex twice a day.
I just know that I cannot work around the spasms. They are debilitating. They are squeezing the life out of me.
Addi
Addi- I have swallowing issues too. Choke easily on water, saliva, etc. I also get the hiccups a lot, a dry cough and hoarseness.
When I sleep sometimes I wake up feeling like I can't breath like my throat is constricted (freaks me out). Most of the time I feel like there is something stuck in my throat. So are these spasms? i don't know.
One thing I have found helpful (since I am un-dx and no meds to help) is to tilt my chin down a little when I eat or when I wake with the choking feeling.
This seems to make food go down a little easier and easier for me to breathe.
I hope this helps a little.
Also- do you have acid reflux?
I am sorry your symptoms are so severe. That has to be the scariest feeling when you can't breathe.
Addi, at the moment I can't come up with anything useful to say, but I want you to know that I care and that I'm on your side.
ess
yeh sorry your going through this. they put me on mysolene- i jerked so bad -thought id throw something out of place-you cant control it. thanks for the tip on room temperture water!! im always -thirsty- i hope something we have said helps you!! hugs!! cainer
I take the flexaril when I need it - some days I don't need one, some days I take up to the maximum (4.) I'm surprised they don't just up your baclofen - I think you can take up to 8 a day. It sounds like you may need some more than just the oral baclofen.
I know nothing about the steroid shots - I'd say try it and see if it works. Good luck!
Paula-
Thank you for your response. Just knowing that someone heard you is always good, too, ya know? Thank you for your understanding. Yes, the muscle spasms hurt quite badly. I think I gotta say it is the worst pain I have e ery experienced and wish it on no one. Hugs...
Jen-
I was hoping you might see my post because I thought i had remembered you having these issues, too. I do take 60mg Baclofen, it was just increased from 30mg on Tuesday. I also take another muscle relaxer (believe it is generic flexeril) 2 x a day. My neuro sent me to a pain doctor to be considered for the pump, Baclofen and morphine. But he wants to try epidural steroid shots (I have done one with no results) first...but that is just focused on my cervical and neck area....I get muscle spasms in more than just my neck.
I will quit with the ice cubes and just stick with water, room temp. and warm liquids. I definitely don't want to provoke this to happen again. The pain was worse than awful.
Yeah, my muscle spasms are way different than the butt thing I had. Repetitive tensing and releasing is exactly what it was doing...no pian involved.
Addi
I have esophageal spasms frequently. I take 60 mg. of baclofen a day, and flexaril when needed for the spasms.
I would recommend hot liquids to relax your throat. I understand the swallowing problem - it helps to think about the process and each step of it while you're trying to swallow, so that you don't do something out of turn and inhale liquid. The heat will help to relax the throat. Probably the reason why you had the spasm was because of the cold from the ice cube.
Actually, if you're having dry mouth, regular old room-temperature water works pretty good. And it won't set off the esophageal spasm.
I'd also talk to your doctor about some sort of muscle relaxer. Flexaril works pretty well for emergencies - baclofen is because I have spasms all the time, and it's just easier/less painful for me to have it in my system 24/7.
The involuntary tensing of your butt muscle is something else. I get that too, but it's not a spasm. At least I don't think so. When I get a muscle spasm, the muscle just gets tighter and tighter, and won't let up. The tensing and releasing of your muscle is a different kind of activity - rather like a twitch or myoclonic jerk. I get that in my stomach muscles, probably because of the lesions in my spine.
I know I can't really help you out here because I have never had anything this extreme happen to me. Now the choking I do have happen, been happening a lot lately. The other day it was quite often. My dh told me to go to the hospital to get checked out but I told him we would wait and see what happens. It went away to a degree. I still choke on a daily basis but not like that one day.
Wanted you to know I am thinking about you and really hope you can get control of the muscle spasms. Those things hurt like he ll. I have my nights where it seems like a constant spasm and it is not fun at all.
Wishing you the best of luck and hoping you get some relief.
HUGS,
Paula