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Avatar universal

Help Please I am new !!!

Hi, I have RRMS for about 11 years.  Lately the headaches have turned into migraines around that time of the month.  I get so nausated, light sensitive, can't stand smells, sound, etc, for several days. Left eye pain.  I have tried excedrine for migraines, topamax 100 mg. q day with little effect.  My neck where I have two lesions becomes very painful and stiff, swollen feeling.  It feels like I am laying on a brick when I try to lay on a pillow.  I have to put my head flat on the mattress lately.  My ear becomes painful, my jaw, left side of my face, and head hurts when it happens.  It usually last two to three days and I can barely eat or drink during that time due to nausea.  The room spins even in my sleep.  Do you have any ideas as what to do for this?  

Also lately my muscles are trembling more at night.  I used to feel like my muscles were shaking but you couldn't feel it.  Now my husband can feel my muscles shaking when I lay down to sleep at night.  

Other times the neuropathy is so painful that I can't get to sleep.  I tried neurotin, but it makes me feel so loopy and drugged the next day that I end up sleeping and feeling so weak that I can't function.  I have also tried lyrica and other meds to deal with the pain with the same type effect.  I am kind of getting the feedback that my system is just too senstive to deal with pain medication and I have to suffer.  Is that true?  I sit and cry at times and feel like I can't bear the pain anymore.  I burry my face in a pillow and cry to hide the pain from my husband.  The neurologist said he would send me to a pain specialist but I have not heard anything, it has been almost 6 months.  There are many nights I am up most of the night suffering in pain.  I don't know how to bear it at times.  I try using a tens machine.  It helps some what.  

The neurologist says medications like norco won't help with the migraines or neck and back pain that I get.  The problem is the neck hurts so badly it triggers the migraines.  If I touch the neck or if there is too much pressure against the neck it will trigger the migraine.  I can't touch the area without triggering a migraine.  

Also, my cognitive functioning is going downhill rather quickly.  I also mentioned that to the neuro.  He said there is nothing he can do for me also.  There is no meds. to help with that.  I am very forgetful, I have problems remebering words, spelling, doing basic things that one needs to do like banking, cooking, etc.  I feel very dependent on my husband and I am in my 40's.  Its very scary for me.  I was working a couple of years ago as a professional and now I can barely get through the day.  

Oh, my speech is getting slurred three to four times a day and during that time my facial muscles droop and I turn into a rag doll.  I get real weak and exhausted.  Any ideas.  I need to sit down and rest when it happens.  Its all part of what ever is going on with the ms.  I figure its all part of the progression.  It usually happens after exercising.  I do try to go on walks everyday and do a dvd to try to maintain some strength.  

Thanks for listening.  I would appreciate any and all feedback.  
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Avatar universal
Thank you.  I am also trying to eliminate as many medications as possible.  I already take as few as possible.  I am trying to reduce it even further.
Helpful - 0
338416 tn?1420045702
Like I said, you may only need the sample - try it for a month, and see how you feel.  If you don't feel any different, then don't bother.   Good luck - let us know how it goes!
Helpful - 0
Avatar universal
Thank you very much.  I will bug either the neuro or the gp until I can get one of them to perscribe the med.  The neuro said it wouldn't help with ms.  I would love to try anything that would help.  I did try one pill but insurance would not cover it as it was a folic acid concentrate.  So I purchased extra folic acid.  

Thank you for giving me hope.   Yipiee.  
Helpful - 0
338416 tn?1420045702
Oh, I should have said "cognitive function in MS!"  
Helpful - 0
338416 tn?1420045702
Sorry I missed this!  I can tell you a little about my experience with Aricept.

Neuros believe that Aricept does not help with cognitive function.  I think that more research is needed.  My psychiatrist recommended it for me after my neuro-psych exam.  After arguing with the neuro, I managed to talk him into a sample of Aricept.

From a purely subjective level, it was as if my brain was low on water pressure, and somebody had turned up the faucet.  I could tell that there were still holes in my brain, but it now had the power to jump over the holes - if that makes any sense.

I found that the moire behind my eyes, when I went to sleep at night, was oddly 'hi-def.'  Hard to describe, but it seemed more detailed and buzzy.  I also felt a little more energized.  Others have commented that it made it hard to sleep at night.

I personally believe that it helped me overcome the cog fog that I was experiencing.  I had gone through a year and a half of gray fog, and I was tired of trying to think through the muck.  Aricept helped me cut through it.  After five months of taking the drug, I felt more like myself, so I discontinued the drug.

Today I can remember phone numbers again, keep track of appointments, and (sometimes!) remember what I'm supposed to buy at the grocery store.  That's amazing, because I had lost all that and couldn't keep track from one moment to the next what I was supposed to be doing.  I was able to talk using the right words, and think of the word I wanted without annoying pauses.  Unfortunately I'm losing my verbal skills again - I can't talk straight, and I have a hard time with vocabulary.  Evidently that's going to be a recurring problem!

Would I recommend it?  Yes, with reservations.  The lack of research bothers me.  Who knows whether I would have improved without the drug?  

My personal theory is that it encouraged neuro-plasticity.  Thinking around the holes allowed my brain to grow new neurons that bridged those gaps.  It got easier and easier to think around the holes, until finally I didn't notice them any more.

You'll probably have to argue with your neuro, but see if he'll give you a sample for a month's worth of Aricept at the 5 mg dosage.  I hope this helps!  Good luck, and let us know how it goes.  

Oh, btw, neurontin and baclofen are the usual medication for spasticity and neuropathic pain - Lyrica is a newer drug that they've had success with.  You might try that and see if it's any better.
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Avatar universal
Thank you.  The MS wasn't caught until last year by the docs.  I knew I had it for 11 years.  They were slow at finding it.  I had the symptoms since I was vaccinated for the hepititis series in nursing college.  Ever since that series of shots I had the symptoms.  Its just it worsened over the years until I couldn't work anymore.  The docs finally acknowledged I have MS a year ago.

Anyway, the neck pain is bad enough it does affect the sleep.  At times the foot pain or neuropathy does.  They are two different types of pain.  It just makes life feel unbearable lately.

The neuro said the meds for alzheimer's won't affect the cognitive problems associated with MS.  so he won't order any of them for me.  

He also is having a hard time ordering pain meds for me.  If anyone has any rec. for a neurologist at UCSF please let me know.  I have seen him for a year and a half.  He says he can treat symptoms but then he says he doesn't like to.  He has me on copaxone but it doesn't seem to do much for slowing down the progression of the symptoms.  

Baflocen, neurotin, etc don't seem to do much for the types of pain I have other than make me sleepy and weaker.  
Helpful - 0
198419 tn?1360242356
Hi there,

No wonder your weepy. Pain like this, no sleep, which magnifies everything - your at your wits end no doubt.

I have chronic in my neck, probably structural and lesion compounding issue.  Causes headaches, pain in my shoulder, then my arm, etc. I take naproxen to keep some inflammation down, but pain is never gone. I've never been on anything to actually combat it.

Are you on and DMDs? If you mentioned and I didn't see, I apologize. We have a member who was or is still on Aricept, and I'll let her describe, but I remember it helped her congnitively.

From my experience, I tend to feel that a lot of decline sometimes comes from pain and fatigue. Of course it comes from the damage, but what I'm trying to say is I feel that at least if we had something that worked on those two things, we'd be able to battle through the rest. I sure hope I'm relaying my thoughts in good order this a.m. My brain is a bit mush too.  For me, I'd like to take something that dulls it so I can rest well and get up in the morning and work through the next day. Nothing strong, just something that provides just enough "give."

Thanks much for joining us and I hope we can help.  Oh, one more thing. After dealing w/MS for 11 yrs, pin your doc to the mat and have em' order that pain doc already. Shame on him/her for not doing so already.

ttys,
~shell

Helpful - 0
Avatar universal
Thank you.  I am 48 and getting hormonal.  Meaning lately when I go through the monthly cycle I am feeling moodier and there is more irigularitarly.  I do the icepacks and the magnesium pills also.  I take potassium herbs and I try to be really careful wih how I hold my neck also.  It pops daily when I move it like its loose up there.  

As to doing puzzles, sewing, knitting, my mind can't handle that anymore.  Its too fusterating to do that.  I am doing barre workouts, yoga, and walking.  I try as much as possible to exercise daily as often as I can to stay mobile and sane.

I do read when I can.  Its all up to the processing abilities of the mind.  I do feel like the cognitive abilities are greatly decreasing off and on during the day lately.  Often all I can do is to sit and stare in to space or watch tv due to severe cog fog.  I can't even carry on a conversation and I am a very intelligent person.  Its just the cog fog is just so severe at times I can't get words out or even write.  

The neuro is very reluctant to order pain control.  He promised to send me to a pain specialist but its been 6 months.  The local doc. won't prescribe good pain relieif either.  I really struggle with pain control.  I don't want to be over medicated, but there are times when I would rather sleep than be feel the pain.  If I can function without pain that would be great.  

I used to work in the medical field and when I went to the ER earlier this year in an accute situation I was treated horribly.  They treated me so terribly it is hard to reach out for medical care.  It seems like the profession treats you like you are drug seeking rather than actually reaching for something to treat a problem.  

All I want is something to keep me comfortable.  When my neck hurts everything else flairs and then I can't sleep, the migraines start, the nausea, I can't eat. . . The whole dang cycle starts.  They just don't listen.  

I go see the neurologist as UCSF.  Does anyone know of a particulary good one there?  The one I see is highly rated in the US, but I am not impressed.  He spends his time writing and thunking me with his hammer.  He doesn't listen to my needs or really watches how I ambulates, or how I feels, my concerns.  

I have gone down hill since being diagnoised one year ago.  I have know I have had it 11 years.  It took the doctors 10 years to figure it out.  LOL.  The RX.  does not seem to be helping.  I have had about 5 flairs while on it.  Shouldn't I be having less flairs?

I am just fusterated.  

Helpful - 0
1253197 tn?1331209110

Hi and welcome to the forum. I am sorry that you are experiencing such painful, frustrating ongoing symptoms and are feeling so much pain.  The first thing I would do would be to follow up your neuro's indication that he would send you to a pain clinic. It is not acceptable that you are suffering so much and it is affecting your day to day ability to function. Pain should be managed and I am sure that if this is helped you will find you have more energy instead of putting all your effort into fighting it.  The migraines seem to be exacerbated by hormonal monthly changes and this is very common for many women and I am wondering if this is worth discussing with your GP as he/she may be able to do something to help with this.

My neurologist indicated to me that RRMS is likely to have an obvious progression by 15 years from diagnosis but some people this may be earlier and for others later. It is an unpredictable condition as we all know and all we are able to compare ourselves to, is our own manifestation and we are aware of our bodies and if we are deteriorating or going into relapse.  I sense that you are very aware that things are not as good as they were for you and certainly the pain and fatigue appear to be very debilitating which is very frightening.

I am wondering if you can find other things to occupy your time at home and take your mind off your symptoms. A few suggestions may include jigsaw puzzles, listening to relaxing music, doing a gentle exercise DVD (yoga perhaps), sewing, knitting, painting, reading, writing a journal to express your feelings.  I am sure that others can think of suggestions to help.  You mention that watching DVD's helps and I love watching films also and find this is relaxing.

However I think the most important thing is to do something to sort our your pain and I would urge you to ring your neuro's office and push to get an answer and referral to a pain clinic.  I wish you well and am sending you support and big hugs.

With love  Sarah x

Helpful - 0
Avatar universal
Sounds similar to me, you poor thing!

May I ask, how old you are? I'm 49 this year and very close to menopause from what I can tell, and the hormone upheaval with that seems to be exacerbating the migraine thing. I too get the sore neck / pillow feels like a brick thing going on........ I'm going to my GP soon to do a full hormone check thing to see if there's ANYTHING that can be done hormonally to help.

Bar that, the only thing that helps me is ice packs, magnesium supplements and being very, very careful how I hold my head and neck.

Hopefully someone else has some better ideas!
Helpful - 0
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