ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: Mei Mei on May 09, 2010, 07:13:54 am
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Dear Everyone,
I googled Post Operative Headaches the other night and much to my surprise I came up with one hit with acoustic neuromas and retrosigmoid approach. So then I did another google search that included Retrosigmoid approach and Post Operative Headaches and came up with so many articles. It seems it is quite common in the retrosigmoid approach. If it is so common, why isn't there more support for those of us who have had this surgery? My neurosurgeon is basically done with me now that the tumor is out, so I will make an appointment with a neurosurgeon to try and get some relief from these headaches.
below is the google search that I found on Retrosigmoid approach and Post Operative Headaches
http://www.google.com/search?source=ig&hl=en&rlz=&q=retrosigmoid+approach+postoperative+headaches&aq=0p&aqi=g-p1g7g-s1g1&aql=&oq=retrosi&gs_rfai=
Anxious to get on with my life and surprised that I am in a category that has such a prognosis.
Take care one and all,
Mei Mei
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Mei Mei,
I am totally empathetic to your situation as mine is pretty much the same. My Doctors decided on the sub-occipital approach to try and save my hearing. While I have some hearing it is very frustrating to know that this approach generally causes headaches. I've been through all the emotions from anger to sadness and everything in between and I too feel like my life has been on hold for the past year and and a half. I wouldn't take this lying down, go to as many doctors as will see you until you find one with this type of experience.
As I write this my eyeball feels like its going to pop out of my head, but yesterday I was pain free. The progress you want to start seeing is more pain free days in between those where you have pain. Its a great feeling to go a week without a significant headache. But the only way for you to begin the upward slope is finding Doctors who will work for you and really listen to you and how you describe your pain.
Again hang in there!
Liz
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Mei Mei -
I just reponded to this on your other thread.
While post op headaches can be linked to the retrosigmoid approach, it'd not a "given". It's pretty much on a patient by patient basis.
There are lots of us on the Forum (me included) who had retrosig and don't have headaches post op.
That doesn't mean that doctors shouldn't inform patients that they might encounter this side-effect. Doctors should disclose fully all the possible side-effects of AN treatment - whether it's radiation or surgery.
Hope you - and Liz - find some relief very soon.
Best,
Jan
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Mei Mei, I feel for you, Liz and others that have the headache issue. I am very grateful not to have this problem.
Count me in the category as Jan and many others that had the retrosig approach and have no issue (so far) with headaches. I also read somewhere (pre-surgery) about the potential greater chance of post op headaches with the retrosig approach and discussed this with my neurotoligist and neurosurgeon. They both told me that they had no complaints with their patients post op from doing the retrosig approach....I have no way of proving this, just took them for their word, and thankfully it worked out for me.
Again, I hope you find relief from the headaches....I just wouldn't want to have people completely steered away from the retrosigmoid approach of AN surgery if it's the best course for them.
Patrick
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True, Patrick. I was advised that it was the best approach for me and that's why we went with it.
Thanks for listening!
Mei Mei
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Mei Mei:
I hope you can find relief from your headaches. I've been seeing a neurosurgeon for a year now & am glad to say that I have found relief. I'm not out of the woods yet, but it has gotten so much better. The headaches, though still chronic, are less frequent and less intense. I haven't called in sick to work for about a month now. As if the headaches were not enough to worry about, I also worried about calling in sick so often that I could be considered less reliable by my bosses. I hope to one day soon say that I am headache free.
Syl
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My headaches started about 2 months after retro sig surgery, I went to a chiropractor last week and found out I'm holding my head very crooked, babying the surgery side. I'm hoping that she can help that and maybe the headaches will come less often or be less severe.
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Hi Sylvia, I am interested to find out what the neurosurgeon is doing to help you. All mine told me to do is to take Motrin and after two weeks the headaches would go away.
Jennifer: How is the Chiropractic helping? I hope it is working out.
I just started getting very gentle massage on my neck at the Physical Therapist.
We'll see what helps.
Take care and have a nice weekend.
Mei Mei
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Mei Mei .....
I think I said this somewhere on an earlier post but I, also, do not feel that headaches are automatic with the retrosigmoid approach. I have had two skull based surgeries with retrosigmoid approach (one on each side). Following the first one, in 1994, I did have significant headaches for about two weeks afterwards and that was it. Following my AN surgery in 2008 I had absolutely no headaches. The two surgeries were done in two different medical facilities in different states, with different neurosurgeons.
For most of my life I have had what I refer to as "barometric headaches" because there is a direct correlation with weather system fronts. This was the case long before either of my surgeries and on an infrequent basis. Since 2008 I have had even fewer of these type of headaches. As with any normal person, I can get a tired headache or bright sunlight exposure headache, or now prolonged very loud noise induced headaches ..... but they are few and far between.
I certainly hope you find some relief for yours ..... it has to be very difficult for you.
Best thoughts and prayers. Clarice
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Mei Mei ~
I'm sorry to learn that you're dealing with post-op headaches and hope you can find relief, soon.
I underwent a 9-hour Retrosigmoid Approach AN removal surgery in 2006 . Prior to my surgery, I was apprehensive about (post-op) headaches but my neurosurgeon assured me that I wouldn't suffer post-op headaches. He was serious - and he was correct. I never experienced any post-op headaches, for which I'm very grateful. My case my be an anomaly, but I doubt it. Also, some AN information found on the internet is out of date and should not be given too much credence.
Jim
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Thank you Clarice and Jim for your support. I am having nightly headaches and it's very worriesome. Tonight I found on Pub Med at the Library of Medicine search several articles on retrosigmoid and headaches and bone dust. Bone Dust was discussed after our DC local area support meeting and I'll ask about that when I meet with my neurologist. It was written about in two of the articles as causes of headaches. One of our members had headaches for 4 years and one for 10 years. I don't want them to last that long for me. I want to get on with things. Thanks for your support.
SIncerely,
Mei Mei
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I think Jim's surgeon should share the secret behind his success performing retrosig surgeries that do not result in post-op headaches with all the other surgeons.
I've heard about the explanation of bone dust possibly causing the post-op headaches. But why does applying heat to the back of my neck stop the pain? I don't think that heat can stop pain caused by bone dust.
Syl
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I don't know, Sylvia. It's been the cause of much anxiety for me. I am now getting neck massages for the pain there, but there is no releif for the headaches. There's a paper that I read last night from Mt Sinai about preventing headaches in retrosigmoid surgery and bone dust. There must be something to it. I can't wait till my neurologist appt on June 8th so I can discuss all this with him and get some kind of referral and get to the bottom of this. I don't want this to go on for years like it did with the members of the local group I went to yesterday morning. I so want to move on with my life. Thanks for listening Sylvia. I know you are there.
Mei Mei
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I think Jim's surgeon should share the secret behind his success performing retrosig surgeries that do not result in post-op headaches with all the other surgeons.
I believe he uses a type of gelfoam around the surgery site, lots of suction and I know he is very careful about patient positioning on the operating table (to avoid subsequent headaches due to neck muscle strain during the surgery). He didn't use belly fat to 'pack' my incision but titanium mesh (secured with tiny screws) and some kind of paste to seal the incision. I suffered no CSF leaks or post-op headaches. I doubt these precautions are a secret but I have to assume that not every surgeon employs them. My neurosurgeon was (and still is) an instructor at Yale Medical School (where he did his internship and residency) and had been performing AN removals for decades, giving him an excellent perspective and a wealth of knowledge about what works best for both doctor and patient. He knew all about post-op headaches associated with AN surgery and inferred that he had long since conquered that problem. Apparently, he has, for which I remain grateful.
Jim
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I don't think it's a surgeon thing.
I seriously doubt that Jim's doctor knows mine and they didn't do their residency or internship in the same place.
I didn't have gelfoam either.
I think this is just like most things AN - we all have different experiences.
Jan
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Hi Sylvia, I am interested to find out what the neurosurgeon is doing to help you. All mine told me to do is to take Motrin and after two weeks the headaches would go away.
Did I say neurosurgeon? I meant neurologist. He started me off with Pamelor, which helpe get me off my Tylenol dependence. I took Pamelor for just under 1 year. After noticing that there wasn't more improvement for some months, I opted out. I didn't want to take any other meds so he recommended icing my neck every morning & also every night before bed. I've been doing that and have noticed more improvement. For now I'm sticking to icing my neck.
Syl
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Dear Sylvia,
I've been using a hydoculator neck pad all weekend. It's relaxing but the pain in the neck doesn't go away and I still have a headache. I went to PubMed at the advice of a man in our Local DC ANA group meeting on Saturday and found three articles on headaches with AN. Here they are:
PubMed Search Results Inbox X
Sent by NCBI
This message contains search results from the National Center for Biotechnolo...
May 15 (1 day ago)
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Sent by NCBI to me
show details May 15 (1 day ago)
This message contains search results from the National Center for Biotechnology Information (NCBI) at the U.S. National Library of Medicine (NLM). Do not reply directly to this message
Sent on: Sat May 15 19:17:48 2010
1 selected item: 12646842
PubMed Results
Item 1 of 1
1. Otolaryngol Head Neck Surg. 2003 Mar;128(3):387-95.
Headache after removal of vestibular schwannoma via the retrosigmoid approach: a long-term follow-up-study.
Schaller B, Baumann A.
Max-Planck-Institute for Neurological Research, Cologne, Germany. Bernahard.Schaller@pet.mpin-koeln.mpg.de
Abstract
OBJECTIVE: Our goal was to study the occurrence and source of origin of postcraniotomy headache syndrome after removal of vestibular schwannoma via the retrosigmoid approach. METHODS: A retrospective chart analysis was conducted of all patients with headache at 3 months after removal of vestibular schwannoma from January 1981 through March 1997 and with a minimum of 24 months of follow-up. Diagnosis was made according to the headache classification and was graded using the HARNER scale. Recovery outcome was compared in selected groups of patients with and without headache. A descriptive statistical analysis was used to analyze differences between groups. RESULTS: Of the patients who underwent retrosigmoid craniotomy for removal of vestibular schwannomas, 52 of 155 patients (34%) reported having severe headache of requiring medication every day and/or feeling incapacitated 3 months after surgery. Headache was more prevalent in those who had the bone flap replaced (94% versus 27%), if there was duraplastic or direct dura closure (0% versus 100%). Laboratory-proven aseptic meningitis, most likely due to the use of fibrin glue and drilling of posterior aspect of the internal auditory canal, was mainly associated with postoperative headache (81% versus 2%). In 75% of these cases, calcifications along the brainstem had been noted. CONCLUSION: The origin of postoperative headaches after retrosigmoid vestibular schwannoma resections is not yet fully understood. Different factors may play a role in preventing or reducing headache: dural adhesions to nuchal muscles or to subcutaneous tissues and dural tension in the case of direct dural closure may explain postoperative headache from dural tension. Intradural drilling and the use of fibrin glue may be the source of aseptic meningitis as the etiology of persistent postoperative headache. Prevention of postoperative headache may include the replacement of bone flap at the end of surgery, duraplastic instead of direct dural closure, and prevention of the use of fibrin glue or extensive drilling of the posterior aspect of internal auditory canal.
PMID: 12646842 [PubMed - indexed for MEDLINE]
MeSH Terms:
Adolescent
Adult
Aged
Craniotomy/methods
Female
Fibrin Tissue Adhesive/adverse effects
Fibrin Tissue Adhesive/therapeutic use
Follow-Up Studies
Headache/etiology*
Humans
Male
Meningitis, Aseptic/etiology
Middle Aged
Neuroma, Acoustic/surgery*
Postoperative Complications/etiology*
Postoperative Complications/prevention & control
Tissue Adhesives/adverse effects
Tissue Adhesives/therapeutic use
Substances:
Fibrin Tissue Adhesive
Tissue Adhesives
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Dear Sylvia: Here's another from Pub Med on Prevention and Bone Dust:
This message contains search results from the National Center for Biotechnology Information (NCBI) at the U.S. National Library of Medicine (NLM). Do not reply directly to this message
Sent on: Sat May 15 19:11:11 2010
Search: acoustic neuroma Post surgical headaches retrosigmoid
PubMed Results
Item 1 of 1
1. Am J Otol. 1996 Nov;17(6):904-8.
Prevention of headache after retrosigmoid removal of acoustic tumors.
Catalano PJ, Jacobowitz O, Post KD.
Department of Otolaryngology, Mount Sinai School of Medicine, New York, New York, USA.
Abstract
OBJECTIVE: To demonstrate a causal relationship between bone dust and the development of headache after retrosigmoid removal of acoustic neuromas. STUDY DESIGN: The study design was both retrospective (group I) and prospective (groups 2 and 3). SETTING: Tertiary Care Referral Center/Outpatient Data Collection. PATIENTS: Eighty-four consecutive patients underwent surgery at the Mount Sinai Medical Center in New York by the same surgical team. INTERVENTION: All patients underwent retrosigmoid removal of acoustic neuromas via the following methods: group 1, standard excision; group 2, excision and cranioplasty; group 3, excision, cranioplasty, and residue trapping. MAIN OUTCOME MEASURE: Presence or absence of postoperative headache. RESULTS: In all, 43 patients (51%) reported postoperative headache. By groups, headache incidence was 64% for group 1 (43% grade 3-4), 81% for group 2 (37% grade 3-4), and 10% (all grade 1) for group 3. Differences with respect to headache incidence and severity were statically significant between groups 1 and 3, and between groups 2 and 3 (p < 0.001). CONCLUSIONS: Free circulation of bone dust into the posterior fossa during intradural drilling of the internal auditory canal may be the most important factor in the development of headache after this surgical procedure.
PMID: 8915420 [PubMed - indexed for MEDLINE]
Publication Types:
Comparative Study
MeSH Terms:
Adolescent
Adult
Aged
Ear Neoplasms/pathology
Ear Neoplasms/surgery*
Female
Headache/etiology*
Headache/prevention & control*
Humans
Male
Middle Aged
Neuroma, Acoustic/pathology
Neuroma, Acoustic/surgery*
Postoperative Complications*
Severity of Illness Index
Tomography, X-Ray Computed
Treatment Outcome
Vestibulocochlear Nerve/pathology
Vestibulocochlear Nerve/surgery*
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Here's another article on Bone Dust I found on Pub Med and the National Library of Medicine:
http://synapse.koreamed.org/Synapse/Data/PDFData/0032JKNS/jkns-47-158.pdf
I will bring these articles with me to my neurologist visit. Hopefully he will point me in the right direction. I want to find out if I have bone dust or what the problem is that is causing the head aches.
Mei Mei
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Hi Mei Mei
I have not had a headache last more than 10 minutes or very painful since Friday night so I am starting to think (hope, pray) the chiropractor may be helping. I still hold my head crooked and my neck muscles are tight but no REAL headaches. I also started massage for my neck and face--I have facial weakness. I'll let you know if they continue improving.
Jennifer
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That's great, I'm happy for you! Several days and counting. I'm getting a neck and occipital area massage tomorrow at the PT. It was so gentle that it didn't help much. I was more aggressive last night on it and stimulated it too much bringing on a bad headache in the middle of the night. I have a small one right now. I'm looking for a neurologist that knows something about this post surgical headache stuff around DC.
Keep up those visits to the chiropractor and I'll wait to hear from you
Take care,
Mei Mei
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MEI MEI,
I SUFFER FROM HEADACHES AS WELL. I HAD TRANS LAB SURGERY DONE ALMOST 2 YEARS AGO. FUNNY THING WAS I DIDN'T HAVE HEADACHES RIGHT AWAY. LAST SUMMER IS WHEN I STARTED GETTING THEM. AND WHEN I DON'T HAVE A HEADACHE MY HEAD ON THE RIGHT SIDE WHERE THE SURGERY WAS DONE, IS IN CONSTANT PAIN. I'M KEEPING THE PAIN MEDS COMPANY IS BUSINESS :). I WAS TOLD THAT THERE IS NOTHING THAT CAN BE DONE. I'M IN THE 1% CATERGORY OF PATIENTS WHO WILL SUFFER WITH HEADACHES FROM NOW ON. SO, FOR ME, SADLY , IT'S A WAY OF LIFE THAT I'VE GOTTEN USED TO. TAKE CARE. MARE
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Mare,
There are so many Dr's with many tools to use, you shouldn't just give up on the headaches. There can be help out there for you. It makes me so sad to see you just accept that this is the way it has to be. In my opinion it doesn't. What kind of Dr's have you seen? Meds? Therapies?
Now I'm sad for you as I also have headaches and have not given up and now the Dr's have found the cause of one type now we need to work on the others.
Hang in there and don't take this as your final diagnosis!
Liz
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Yes, I agree with Liz, Mare. Don't give up and take this lying down. There has to be a solution. Go to a headache specialist and bring the March issue of the newsletter with you on Postsurgical Headaches with you. Insist that you have a post surgical headache and not a migraine. I went today for a neck and what the therapist called a sub occipital massage. I feel much better. She told me to come home and put a hot hydroculator pad on it so that's what I am doing. It's loosened up quite a bit after two treatments.
Please don't give up. Where do you live? I will help you find a doctor in your area.
Mei Mei
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Mare:
Who told you nothing could be done about your headaches? Besides the meds, what have you tried for the pain? What meds do you take and how often. Have you tried applying heat or icing your neck? If you take some pain meds too often, your body becomes dependent on them resulting in a vicious cycle that gives you more headaches. What works for some may not work for others, but we have to try and find a solution for these headaches.
Syl
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Mare:
Who told you nothing could be done about your headaches?
Good point. Captain Deb is one who has suffered from headaches - some doozies - and she's found ways to get relief. You should search for her posts.
Jan
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Hi Mare,
Please do not accept that you will have these headaches forever--there is a lot that can be done besides living on pain meds, which can do more harm than good. Don't rely on your neurosurgeon as the last word, find a headache pecialist. I believe that many of us will never know exactly what is causing our headaches as they stem from multiple sources, but there is a lot we can do to alleviate the symptoms--nerve blocks, Botox, preventive meds, physical therapy. Don't give up!!
Capt Deb
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Yes, Listen to captain Deb. She gives good advice that will help you. Doon't give up non matter what!!!!! Mei Mei
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THANKS ALL FOR THE ADVICE. MY ENT WHO WAS ON THE TEAM OF SURGEONS WHO PERFORMED MY SURGEY, TOLD ME THERE WAS NOTHING TO BE DONE. I DID TAKE PERCOSET, AFTER SURGERY. I TRIED TAKING THEM AGAIN AND THEY DON'T WORK. SO, I ALTERNATE BETWEEN, TYLENOL. ADVIL. ALEVE AND EXCEDRIN. I HAVEN'T TRIED ICING MY NECK OR PUTTING HEAT ON IT. I DO USE NECK PILLOWS. SOMETIMES THAT'S WHERE THE HEADACHES ORIGANTE FROM. DO I ICE FIRST THEN THE HEAT. I GO BACK NEXT JAN. FOR ANOTHER M.R.I., I HAVE A RESIDUAL TUMOR THEY ARE WATCHING. THANKS FOR THE ENCOURAGEMENT. :)
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Keeping a headache journal can be a very useful tool when you go see a specialist. Be sure and write down the time of day and location of the headache, level of pain on a 1-10 scale, length of headache, what you ATE (this can be important) and if there are any weather patterns like low barometric pressure (usually what you get when it rains) and any emotional stressors you are experiencing. This is an very valuable tool for a headache specialist in designing your treatment plan. Also do some research on rebound headaches, which you can get from over-use of OTC meds. It sounds like you are at the point where you need to be on a preventive med like gabapentin (Neurontin). Injection therapy has worked great for me, too. Started with nerve blocks and am now getting Botox, which has worked really good for the headaches that move to my temple, eye, and forehead. Most headache clinics have websites or your doc can refer you to one.
Capt Deb
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I HAVEN'T TRIED ICING MY NECK OR PUTTING HEAT ON IT. I DO USE NECK PILLOWS. SOMETIMES THAT'S WHERE THE HEADACHES ORIGANTE FROM. DO I ICE FIRST THEN THE HEAT.
I don't mix the ice with the heat. When I have a headache, I use heat. I used to wake up early in the morning with a headache several times a week & used to sleep with my electric heating pad on my night stand. Son't need it so much any more :). The ice is what I use every night--5 minutes on then 5 minutes off. I do this for an hour. I'm supposed to do this every morning and every night. Hard to do in the morning. I'm real good about doing this at night before bed, but it sure is hard to do when it's cold.
Syl
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I'm sure it's not comfortable using ice on a cold winter's morning, but better than having a headache at least. You need the relief.
Good news, I didn't have a headache last night for the first time in a long time. Maybe the massages are helping!!!! I have another massage tomorrow at noon.
Will keep you informed about the success of Suboccipital and Neck Massages.
Mei Mei
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The usual rule is that ice is for nerve pain and heat is for muscle pain. A lot of the time I have both--nerve pain in the back of the head and muscle pain in the neck and shoulder. I ice the back of my head and put one of those wrap around microwave thingies around my neck. Works for me!
Capt Deb
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Mei Mei, that's fantastic news! So happy for you :D
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Thank you, Liz. I feel something must be working. The stiff neck and sub Occiptial area hurt like the devil but it is not a "head ache" It is very stiff and numb from the recent surgery. That will come with time I guess. I am taking charge of my life and calling every day for appointments. It's taking over my life like crazy. I wanted to take time to read a novel or something like that but right now this is priority. Tomorrow morning have to take my father to PT at 9:45 and bring him home, then it's time for my PT and boy am I looking forward to that. With each appointment I feel I am one step closer to a headache free life. At least there is HOPE.
Take care and here's to a headache free night!!!!
Mei Mei
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Mei Mei
I'm so glad you had a good night. I went 5 days without one! so now maybe its your turn.
I don't remember if I told you but I'm also having massages at the chiropractor's office, she is only doing my neck area so it may be similar to what you are having done. The neurosurgeon's office is referring me to a headache specialist, it takes about 2 months to get seen so I'm hoping by the time I have an appt maybe they will be completely gone but I'm going to take Capt Deb's advice and start journaling my headaches.
Here's to a headache free night ::)
Jennifer
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Thanks, Jennifer....I love this website...you are all great!!! I am HOPING for a PEACEFUL night with out a headache. Here's hopeing.
Will keepin touch tomorrow morning. What a life from day to day. No? We are all haging in there? Take care and sweet dreams!!!!
Mei Mei
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THANKS SYL, FOR THE ADVICE OF ICING AND APPLYING HEAT. IT WORKED FOR ME. I HAVEN'T DONE IT LIKE YOU SAID 5MIN. ON AND 5MIN.OFF, SINCE I JUST READ THIS TODAY. I APPLIED THE ICE PACK AND THEN WHEN I WENT TO BED I HAD THE HEATING PAD ON. SO FAR SO GOOD. I'M AVOIDING HAVING TO GO TO A SPECIALIST FOR THIS. OUR INSURANCE IS AWFUL THIS TIME AROUND.
MEI MEI I'M HAPPY THAT SOMETHING IS WORKING FOR YOU AS WELL. LET'S ALL KEEP OUR FINGERS CROSSED THAT WE CAN ALL BEAT THESE HEADACHES. :)
TAKE CARE, MARE
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I am late joining this thread, and I don't have loads of advice since my headaches are fierce but infrequent. Mine seem to be mostly tied to low pressure weather systems. Since Houston is gearing up for the next hurricane season, I am also gearing up to a headache season! Mine come in the wee hours of the morning, and like the others, ice for the head and heat for the neck works pretty well. I have also found that since caffeine works well for my headaches, Excedrin works better than most OTC meds.
Glad to hear you have had some relief from your pain. A good night's sleep goes a long way in helping you to cope. Last time I saw my surgeon, he admitted that if the usual meds he would prescribe didn't work, then his next step would be to refer me to a specialist. His prescription didn't work, but I have had some success in treating the headaches on my own.
Priscilla
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Hi, haven't spent much time on the forum recently, just trying ti deal with these headaches. At my last doctor's visit my neurotologist decided to up my dose of Efexor from 50 2x's a day to 75 2 x's a day. I personally don't feel like this is going to help. He said that if there was no improvement in a few weeks, he would wean me off this med and start Topomax and more Botox injections. Well, I've been frustrated and down about these headaches not disappearing 8 months post op. So I decided to try a different approach. I just saw a dental specialist who specializes in oro-facial pain and disorders. He took xrays, checked my neck, face, cheek, and inner chhek muscles. He found all the spots where I get the facial and head and neck pain. They pretty much line uo all along the same one or two muscles in the area. He feels that my muscles have been overstimulated to react when my nerves were touched during surgery. He also said I am keeping my bottom and top teeth touching (clenching) and this is causing my muscles to pull into a fist. So these are the steps he recommends: 1- making me a biteplate to wear at night to keep my teeth apart. He said top and bottom teeth should never touch. 2- He gave me some M words to use that put your jaw in a natural position, such as "emma". I also have a small retainer to wear intermittently at home just to remind me to keep teeth apart. 3- He gave me about 5 injections (with a little lidocaine for numbing), they are trigger point injections. They were given in each of the tight knots of muscles in my neck, jaw, cheek and face. His goal is to retrain the muscles to stop reacting to the nerves. I will return next week for more trigger point injections, possibly some Botox injections and I am getting an appointment to see a certified myofacial physical therapist that specializes in this type of pain disorder. I had 3 painfree headache days after the injections, which was wonderful! For the past two days I have been getting lighter headaches/facial pain only 1-2 times a day instead of 3-4 times a day. I am hoping this new approach will work and give me a chance to get all these drugs out of my system. I am feeling hopeful! :)
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Hi, Lauren ~
I've followed the account of your struggle with headaches and I was pleased to learn from your last post (5/29) that you've been pro-active and are finding a different path to relief (via your dentist). I was delighted to read that your headaches have diminished somewhat following the muscle retraining regimen you're currently engaged in. I trust this will continue to be an efficacious approach and that you'll finally be able to attain the normalcy you've been trying so hard to find these past months. We're rooting for you! :)
Jim
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I am a believer in a non-systemic approach to treating headaches--the drugs are brutal on your system. Nerve blocks and Botox, PT, massage, an anti-inflammatory diet and supplements, ice and heat along with occasional use of Imitrex and, during severe attacks, using opiate pain meds are what I am relying on these days and I have been at this for 7 years.
Capt Deb
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Hi Deb
Can you elaborate on the anti-inflammatory diet or where I can find some more info. Your advice is very appreciated.
Jennifer
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Priscilla,
It sounds like we have similar headache situations. I was really happy to have found Excedrin worked well, until recently when I started getting chest pain when I took it. Now I'm trying to wean myself off all caffine. :(
MeiMei,
Keep us updated how things work out for you and what you find out. I called to make an appointment with someone at U Maryland (my corneal specialist referred me) but he didn't have any appointments until September. They have another neurologist who specializes in headaches there who I might try to get in with. You are going to someone in DC, correct?
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Hi Deb
Can you elaborate on the anti-inflammatory diet or where I can find some more info. Your advice is very appreciated.
Jennifer
http://www.dlife.com/photoGallery/viewGallery.php?albumId=199&gclid=CPqn-5WU16ECFVhJ2godV3srLw (http://www.dlife.com/photoGallery/viewGallery.php?albumId=199&gclid=CPqn-5WU16ECFVhJ2godV3srLw)
Also check out the topic "Captain Deb goes gluten-free"
Capt Deb
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I went to an accupuncturist yesterday and she treated the skull and neck and then had her massage therapist give me a wonderful deep massage on the skull and neck. I have to report that I didn't have a headache last night!!! So happy.
Just had PT and a massage of the same areas but the massage at the accupuncturist was so much better. Will continue this twice a week.
It's nice to report good things to you. Wish this doctor were around you!
Mei Mei
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Capt Deb
Thanks for the website.
Mei Mei
I'm so glad you are having more good days.
I think the chiropractor is helping with the headaches that last for hours but are not as severe in pain. I was having those 4-5 days a week, I still have some pain moments but they don't last nearly as long. I have severe headaches 3-4 times a week, usually they go away in a half hour, nothing has helped with those, yet.
I saw my family dr today and he gave me a referral for PT. We just have to keep trying new things--like the acupuncture you tried, every one less headache is an accomplishment!
I'm so glad for this site and all the ideas.
Jennifer
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I hope you-all are keeping a headache journal. This is a great tool should you decide to see a headache specialist.
It should include, the time of day the headache comes on, intensity and location of pain, type of pain (throbbing, burning, aching) what you ate, weather patterns including barometric pressure, physical activity and emotional stressors.
Nickittynic, my specialist had me get off caffeine 4 years ago. Still drink a little decaf in the AM and decaf green tea during the day.
Capt Deb
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I don't know what it is but the headaches are full force and the swelling in the head is just as bad with the pins and needles all over the scalp. I ice the neck frequently to calm it down and don't go out in the hot weather if I can at all avoid it. I might have to make a trip up 10 miles to the accupuncturist tomorrow just to get a treatment but don't feel like driving there as the skull is so tender. All I want to do is stand under the shower and massage it. I can't get a decent night's sleep from this even with the elavil and Aleve. I'll add Benedryl to the mix tonight to see what happens. My appointment with the Neurologist isn't until the 26th. I went to the Anesthesiologist and asked for Botox and he said it was too expensive so am looking for someone who doesn't care about the expense because I have great insurance. I really want to try Botox and have to make some calls around to find it. Even my father is getting it in his legs and hips for his contractures to straighten out his legs, but I can't get it. How frustrating.
Off to bed now. Hoping for a better day tomorrow.
Mei Mei