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08/14/2009 09:35 AM

Baclofen helped me!

mariaalaine30
Posts: 75
Member

Hi All! Just wanted to update you on my treatment thus far. I have never been diagnosed with NDPH, but have had a constant, non-breaking headache for 5 months now. I've tried alot of drugs and the combination of drugs that has helped reduce alot of the pain has been Keppra (anti-seizure med) and Verapamil. I took Verapamil with Nortriptyline and it did very little for me, but when my neurologist put me on Verapamil 180MG with Keppra, my headache reduced significantly. I have since then been referred to Dr. Michael Sethna at the Nuran Neurological Center at Abbott Northwestern...he is a headache specialist. Anyway, he seems to think that my headache began with a migraine and the pain from the migraine caused me to have severe neck muscle spasms.....(my MRI showed a very straight cervical spine as well as pretty severe muscle spasm)...anyway, he prescribed Tizanadine...which is a drug for Cerebral palsy and MS patients..and that provided NO relief for me. He then, a week later, put me on Baclofen, a drug used for the same purpose as the Tizanadinem, and it has REALLY helped my headache. I am functioning since I have been on the drug for the past 4 days at a pain level of 2....used to be alot higher pain level. Anyway, I just wanted to pass the info on....if you are a headache sufferer with neck pain or stiffness, then maybe you should ask your specialist to put you on Baclofen. Like I said, Tizanadine is a similar drug...but it gave me NO relief....but the Baclofen really is helping me thus far. We'll see what happens in the next couple of weeks with my headache. He said that I will have to be on it for a minimum of 2 weeks to see optimal results. I've experienced great results already...after 4 days! Just thought I'd share. Hope it helps someone! Smile
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08/14/2009 09:49 AM
drmeows
drmeows  
Posts: 1279
Senior Member

Thanks for the update Mariaalaine,

My hubby also tried tizanidine (muscle relaxer) and it did nothing, in fact he felt it made his headache worse. He's never tried baclofen though. Something to add to the list. I just read online there is even a baclofen pump, but it seems it is for people with severe MS or spinal cord injury, paraplegic, etc.

I am so happy you are having lower pain levels!


08/14/2009 09:53 AM
WendyLou
WendyLou  
Posts: 380
Member

Thanks for this post. This is of particular interest to me. I've had a headache(s) for almost two years now. It started like a severe migraine for 10 days then "broke" and my pain level went down but there was significant neck/shoulder pain as the same side as my headache. Since then the headache has been around at some point almost everyday but thankfully, unlike many others here, I do get some pain free time (from minutes to a whole day.)

Like you I have no curvature in my neck and I have four bulging neck discs with muscle spasm. I've received conflicting views on whether my neck issues are causing the headache or if the headache is causing neck pain. (I had neck pain for 10+ yrs prior to the headache.)

Dr recently gave me Baclofen. Prior to that I tried Tizanidine but I've never taken either with regularity - only when the pain spikes and is unbearable and I need to try and relax/sleep. Are you taking the Baclofen every day? At what dose? I'm just thinking maybe I should give it a more regular try and see what happens. Also, did your MRI show muscle spasm or did the doctor just feel them? I didn't know an MRI could show muscle spasms?

Thanks for sharing your story!!


08/14/2009 03:32 PM
MaryR
MaryR  
Posts: 4122
Group Leader

That is wonderful that you have found something that is giving you so much relief! Thanks for posting your experience.

08/14/2009 08:35 PM
Enbee
EnbeePosts: 1556
Senior Member

Hi mariaalaine

I'm so glad you have found something that helps you! I was on verapmil for awhile and it did nothing for me either. Baclofen is one of the next things my neurologist wants to try for me, so I'm glad to hear it has worked for someone.

N.


08/15/2009 02:21 PM
Lisasmom
LisasmomPosts: 508
Member

Maria, congratulations on finding something that works! I hope you continue to have success with the baclofen.

While we are on the subject of these drugs others might want to research some studies done on tizanidine. The patients had chronic daily headaches and had good results with reduction of frequency and intensity. The dosages were higher than normal, total of 20 mg. a day. Sleepiness was the main side effect. Lisa tried it the summer after her headache started. It didn't work for her but she enjoyed her 3-4 hour afternoon naps! Wouldn't be too great for someone who works!


08/15/2009 05:36 PM
mariaalaine30
Posts: 75
Member

Wendy....I am on 10 MG tablets of Baclofen and I take 2 tablets 4 times a day. (so 8 tablets daily) I can tell when I am scheduled to take my next dose because the headache and neck pains start to come back. Baclofen made me really tired at first, but now I seem to be getting used to it because I am not nearly so tired like I was when I first started it. As for the muscle spasms....I asked my specialist if he could see muscle spasms on my MRI and he said absolutely....he also said that was what was causing my loss of curvature in my cervical spine. Your headache pain sounds alot like mine....although I haven't had a day without pain like you have....my pain varies in intensity daily and I've experienced minutes without pain...but I always have a stiff/numb feeling in my neck and back of head even when I am experiencing minutes without pain. Not meaning to sound nosy or improper....but do you happen to have a bigger chest? I do and I have done some research and have discovered that having a big chest and wearing a bra that isn't supportive or that has thin straps can cause shoulder, neck and head pain. Also, just the extra weight of having a bigger chest can cause headache. I am going to ask my specialist about this. Just curious if you have the same issue or not. I was on flexeril for a while and my specialist said that flexeril won't touch the kind of spasm I am experiencing. He said that Baclofen is for severe muscle spasms.....so maybe you should ask your specialist if you can up your dose and take it at regular intervals throughout the day. He said that I need to take it a minimum of 2 weeks to notice a major difference in my pain, but like I said previously, I've already noticed a big difference in pain level. Hope this helps you!

08/15/2009 06:36 PM
WendyLou
WendyLou  
Posts: 380
Member

Thanks so much for the additional detail. I'm def. going to ask my doctor about the muscle spasm thing. My massage therapists and chiropractors that I saw in the past always remarked about the muscle spasms but the neurologist has just referred to it as myofascial pain. Do your spasms feel like a sharp shooting pain or is it a more constant dull ache? Mine is a constant dull ache that spikes - not sure if that qualifies as a spasm at this point or not?

I wanted to clarify something . . . even thought I am fortunate and get a few breaks from the headache I do have constant neck pain. Even when there's not pain, I always have a stiff or feeling of something needing to pop, similar to what you explained. Is your pain one sided or on both sides of your head and neck?

I would describe myself as slightly larger than average in the chest. Not something that I've ever thought was contributing to my pain but that's an interesting point you raise. I do think I have bad posture in general (letting my head/shoulders round forward) which may have contributed to the neck pain over the years.

Does your doctor believe that the Baclofen will eventually stop the spasms and the headache will go away? My Baclofen prescription says I'm only supposed to take it two or three days a week so at my next appointment I'm going to ask him if I can try it everyday like you and see what happens. My one concern is that the Tizanidine and Baclofen both make me sleepy so I'm not sure how I can take it and go to work but maybe I can try to time it to start when I can take a couple days off and let my body build up a tolerance.

I hope you don't mind all the additional questions - it's just that your situation does sound similar to mine so it's so helpful to compare notes!! Take Care!!


08/16/2009 04:00 PM
mariaalaine30
Posts: 75
Member

Hi Wendy! My pain in my neck is more of a constant dull ache too....sometimes it doesn't ache so much, but it just feels stiff....its weird, its really hard to explain, but it definitely doesn't feel normal. I get the pain on both sides of my neck and head. I usually have back of the head pain, occipital pain and when my pain is severe...the top of my head really hurts as well as the crown of my head....although, since taking the Baclofen the vertex headaches are most definitley less severe and troublesome. My specialist told me that the pain on the top of the head is pain that is radiating from the spasms. When I feel the sides of my neck, they are usually hard as rock. Whenever I have head pain, I feel like I need to rub my neck to relieve the pain, but it is only relieved for a few seconds when I do this.

Another interesting point is that when I wear high heels, my headache gets far worse, which would tell me that my headache truly is caused by muscular/skeletal problems. Do you notice pain being worse when you wear high heels?

Anyway, being that your headaches sound very similar to mine...I think you most definitely should get on Baclofen...it doesn't hurt to try it. People with MS and Cerebral Palsy are on Baclofen every day for most of their lives. I am not sure if Baclofen is something that I have to remain on....I know he wants me on it for several months....I think he said he is using it to try and break the cycle of Muscle Spasm-headache. I'll let you know what he says though. I am supposed to call him in two weeks to let him know where my pain is at. I will ask him what he thinks about how long I will need to remain on Baclofen and then I will let you know, K? Smile BTW...have you been officially diagnosed with NDPH? I haven't, but NDPH seems to fit my headache problem....I remember the exact date and what I was doing when my headache started. One reason why my doctor thinks I am in a muscle spasm....thus persistant headache...cycle is that my headache started with a terrible migraine and then a day or two later, my neck and back of head started to hurt. I have struggled with migraines my whole life, but this is the first time the the headaches have become persistent and non-breaking. How about you? Have you had problems with headaches throughout your life?


08/16/2009 07:19 PM
Judson
Posts: 54
Member

So glad that Baclofen has helped some of you and may yet help more! I'm kicking myself for not posting that it's a medication that I've been on for a number of years. It's very helpful for me when I take it PRN. I can take up to three 10 mg tablets a day. Another muscle relaxer type med that helped me is Norflex.

Something really interesting about the recent posts has been the discussion about posture. I just completed my physical therapy for the occipital nerve decompression surgery, and the main focus was, you guessed it, posture. Of course, we worked on gentle neck stretching and other things, but proper posture was the biggie. The therapist even helped with my posture while working on a computer. She also gave me some gentle excersizes to help strengthen the muscles that enable us to maintain good posture. I've noticed a difference in a relatively short period of time.

Have any of you ever had ultrasound treatments? I had them as part of my physical therapy and they really helped. I carry a lot of my stress and tension in my neck, trapezius muscles, and upper shoulders, and since the ultrasound works well beneath the surface of the skin, it's helped me a great deal - even more than massage.

Hope this helps. Take care all,

Judson

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