Headache pattern has changed

[bridgie]

Although I'm signed in under "Bridgie" I was previously "Terracotta." Its been along time and I couldn't remember my password. 

At any rate I'd started getting botox injections around the last time I was here and thought (hoped) I was improving. My pain specialist had decided I had 'scar neuromas' from the nerves growing back funny and 'firing. At the very least this 'firing' caused me to feel like someone kicked me in the side of my head and at the worst triggering the trigeminal complex initiating a migraine headache. My triggers are pretty hard to avoid. Things like walking, riding in any kind of moving vehicle, visual & sound stimuli, etc.

After several botox injections around the auricular nerve I got pretty cocky. I even tried to see how long I could last between injection appointments. My PCP prescribed Norco for breakthrough pain. I became less worried about my head pain and more concerned about my neck pain which has ramped up due to four herniated discs. In the past if I'd get a migraine I'd just take the pain meds and rest. Sometimes I'd vomit, but once it was over Id actually feel better.

Now in the past couple months I've had to go to the ER twice. The only time before this new pattern immerged I went to the ER for a headache was because I had a cranial epidural abscess. But now once I start to vomit I can't stop. I even try taking anti-nausea meds but it still won't stop. I need injectables. This is a huge nightmare now.  I've gotta come up with a new plan, seek fresh eyes. Anyone else have things suddenly crumble all over again?

Bridgie (aka terracotta)   

[Captain Deb]

Bridgie,

Although I've only thrown up a few times from my migraines, the nausea has always been  bad enough for me to keep a trashcan in the room or spend time in the bathroom until I started self-injecting with Imitrex.  It works pretty good on the nausea and the headache and works really fast.  It comes in a little injecta-pen, too. It is really expensive, so I hope you have good insurance!  I beg samples from my doc. Other peoples docs, too. (Thank you Phyll!!!!)
I also use Compazine suppositories (generic). Add a Xanax for the anxiety and I try to conk myself out and just try to ride it out or sleep. 

Have you read of Janet's experience with Dr Ducic? He sort of specialises in nerve surgery.  Maybe he could help you.

As soon as my Medicare kicks in in June I'm going for nerve blocks. Turns out that medical procedures like that are cheaper for me than prescription medication!

Hope this helps and I hope the headache monster stays away for a while.

Hugs,

Capt Deb

[Janet]

Hi Bridgie,

I remember you posting a while ago under the name terracotta. Didn't you bring the term scar neuroma to the forum?  My headaches have improved dramatically since you were last on the forum.

I felt pretty good when I had Botox injections and was on Indomethacin. I tried to space medication and treatment out too, but it never worked. Botox and medication does not cure anything. It only treats the symptoms. As soon as you stop the treatment, the pain will return.  The same with nerve blocks. When it wears off you still have the pain. (Steroids mixed with the anesthetic might quiet down the nerve, but if the problem is structural, it will eventually get irritated again.) Nerve blocks can help determine where your pain is coming from.

It sounds like you have a number of issues. I think the challenge is finding a doctor that can address all of these issues. (Migraines, scar neuroma, 4 herniated discs & cranial epidural abscess What is this?)

If you do a search on this site of scar neuroma and Dr Ducic you should find some of my posts about a surgical fix.  I only take Tylenol or Ibuprophen now.

Janet

[bridgie]

Thank you Capt Deb & Janet! I remember you both. Yes, I brought up the term 'scar neuroma.' I've been trying all sorts of things. Trigger point injections, acupuncture (makes worse due to altered anatomy), nerve blocks X 9, deep tissue massage, PT, etc.

My doctors has given me an arsenal of meds in case I get nauseated and the pain keeps ramping up. So the second time this happened I used to suppository anti-nauseates, took the pain meds  but the vomiting continued. Now I have a new arsenal of meds to try the next time. My PCP added another pain medication,  a second antinauseat, antivan, dilaudid and even my husband got a IV bag to rehydrate me. As of yesterday, my doctor is adding a longer acting pain medication so I'm not under treating my pain.

You guys make me feel there is hope!
Bridgie (terracotta)

[staypoz]

Hi, Bridgie.  Hang in there.  Perhaps this is a phase of some kind.  I'm 4 years out from my surgery and my pain pattern has changed over the years.  It actually took a turn for the better after I had the very worst head pain and accompanying nausea ever.  Since that one horrific episode, it's been pretty much uphill, with a lot of help from accupuncture, nerve blocks, hypnosis etc. 

It sounds as if you have a doctor who is willing to work with you on several fronts.  I hope this is a temporary phenomenon on your road to recovery.

Staypoz

[bridgie]

Yep Staypoz, I'm also 4 years out. I like the idea of being in a phase, besides sounding youthful! like you, the pain patterns do seem to evolve. I did have improvements after a couple botox injections. But now its changed for the worse. Hopefully the pendulam (sp) will swing back soon. I wonder if the nerves that seem to grow back funny in the first place have gotten clever (and aggressive) and grew around the nerves that were hindered with the botox.  Ya get to thinking these thoughts when its such a part of your life. One time i decided to give the pain thing a 'name' before they decided I had a scar neuroma. Seemed like a good idea to give it a separate identity from myself. Back to this 'phase' thing--- maybe my pain (aka Grace) is going thru a teenage rebellious phase, she's dressing in Gothe attire etc!

[Captain Deb]

Bridgie, Have you ever consulted a plastic surgeon?  Seems something like a scar neuroma could be surgically altered by someone with alot of know-how! Also what kind of preventative meds are you on? (neurontin? Topamax?)

Capt Deb

[yardtick]

I'm one of the lucky ones with a scar neuroma.  Last month I received a nerve block 3 injections and was put on neurontin.  This time last month I could only sleep on my right side.  I can actually feel the neuroma and it is still very tender to touch.   Just so you know once the local anesthetic wears off the pain is unbelievable.  My Dr told me the local would last for 4 hrs..........it wasn't even an hr.  I live 1 hr away from the hospital, it was during rush hr on the drive home and I was in agony.  It took about 10 days for everything to settle down. 

Has anyone experienced finger and wrist joint pain from the neurontin?  Maybe its just me but gosh, my joints ache.  My middle finger on my right hand is swollen.  I see the Dr on Thurs, and I have my shopping list of questions.  Make sure you drink lots of water with the neurontin.

Anne Marie

[Captain Deb]

I have my first appt at the pain clinic this Wednesday for a nerve block.  My headache wizard gave me some trigger point injections previously but I don't think they were bona fide nerve blocks () This appt is with an anesthesiologist.  My occipital nerve still likes to fire up all day long when I do any kind of exertion, particularly when I bend my head forward.  I hadn't been to the pain clinic before because they wouldn't take my insurance and I had a large deductable anyhow. Now that I'm on Medicare I can actually afford to get proper medical treatment for myself.  After 5 years. Not excited to hear that it is actually painful! Yikes!!

Capt Deb

[Janet]

Deb,

Great! I am so happy that you have an appt. If you get instant relief and only the occipital nerve is targeted, it will prove that the occipital nerve is the problem. Mine was mixed with a steriod and that provided some relief even after the anesthetic wore off. Keep us posted.

Janet

[bridgie]

Hi ladies-
I'm not on a preventative. I'm taking 4-5 Norco per day now. I've tried anti-seizure and anti depresents. now my PCP is having me try long acting pain meds. Can't remember the name. Still need to pick up at the pharmacy. My PCP thinks I'm under treating or medicating my pain. I feel funny about taking Norco all the time. I emailed the Pain clinic and they never contacted me. They seem to have dropped me. I'm heading back to my ENT and Neurosurgeon. I also am working on getting an appointment with a headache clinic. I hadn't thought of a plastic surgeon.

I read a lot about different kinds of head pain or headaches. I seem to be between 'thunderclap' and neuralgia. Like I said this has evolved so I can't stop throwing up. Really cannot 'not' go to the ER so far when this happens.