I had my mvd in April of 2012. In Oct 2012, I got a headache that I thought was seasonal allergies. It never went away. My PA ran me through tests and tried differ meds til my neuro could find time to squeeze me in. Nothing worked and no problems could be found on any scan. My neuro told me that I was just having hormonal migraines. Ugh! No migraine medicine has phased it. Only a handful of Advil will really make a difference. I get this feeling like bubbles up the back of my skull sometimes, and I can hear them. It’s like someone pouring coke in a glass. A year later and still no one knows what is going on. I’ve since left my neuro and am waiting to get into a new one. I keep telling people it has to do with my mvd because my scar gets tender and swollen as my headache worsens. I’ve been told no. Two weeks ago my TN came back. Now it’s on the opposite side.
Has anybody else had any relatable experiences? My surgeon’s office told me that I wasn’t a candidate for a second surgery, even though they haven’t seen me since my first one. (It’s a state away). My family dr said he didn’t know enough about it. Ahhhhh! I’m going crazy here. Trying to find a dr to LISTEN to me and not dismiss what I’m saying is getting ridiculously hard. I still think the two are related. Any thoughts?
While so far I can not relate to the wicked headache I can relate to the odd sensation. You refer to it as bubbles but mine feel like ticking. I have often thought of the alligator who swallows the clock in Dr.Hook. My sensation is in my right temple area and seems to be a bit dependent on the position of my head. I have not mentioned it to any doctors yet as I really am not that worried about it. Perhaps I should be.
Hello, Maybe I can help.2 things you said caught my attention; Advil helps and migraine med does not.
After a process of elimination I discovered that some of my face pain was coming from my head and eye headache's, that roam around my head with autonomic symptom's.
I will post a link to the British journal of pain so you can read up and see if your headaches and face pain have a relationship.
Mine are called Trigeminal Autonomic Cephalagias or TAC's. The only medication mine have responded too was 1st to diagnose it, I did an Indomethacin trial. This finally helped. And confirmed dx. The maintainer drug is called Verapamil. So I now add Verapamil 2x pr day and take the Indomethacin when bad or Naproxen or Ibuprofen depending on severity of break thru spikes. I was amazed at how often the merry go round plays out. When my head hurts my face hurts more. When my face hurts my head hurts more. I have many triggers to stay away from that help control the head and eye headaches.
BTW- I self diagnosed this and brought it to my GP who understands some because he suffers from migraines himself. So the two of us together found medicine to help just those crazy headaches. I still have to treat my bilateral TN and ON differently.
Feel Better Soon, Tree
P.S. I do also get several strange mostly painful sensations. One of which you described as bubbles. Others are worse like being hit with a hammer, standing up under the cupboard, pony tail on too long, and most of the autonomic symptoms described in TAC's.
I have ongoing headaches. But I think I always have. Seems since my mvd they are worse. My medication counselor has tried me on a few different meds. By the way, before TN, I didn’t go to a medication counselor. Anyway, I have been on depakote, and now am trying topiramate, commonly known as topamax. Oh, and I also have a nasal spray called sumatriptan,commonly known as imitrex.
Prior to TN, I took excedrin. Those headaches were nothing compared to these I get now, only, since I began to take topiramate, my headaches are fewer and less intense. I’m not on depakote right now. The only problem with these medications is the side affects. Seems there are always tradeoffs.
Topamax is on the list of medications for the TAC's. So is Imitrex. Prior to my MVD I would get 3-4 migraines per week. I have had headaches since my late teens. Until around 5 years ago they where episodic now they are chronic. Imitrex used to sometimes work, but now not even, I rebound in an hour to a worse headache.
They get worse with any physical activity, with neck movements, they happen in my sleep and wake me up, elevation changes, or bending over. I probably forgot something.
If a person has TAC's they may respond absolutely to Indomethacin (heavy duty anti-inflammatory) this medication helps determine which TAC you have. Verapamil is the maintainer drug. The side effects are very mild if any. The only side effect of Indomethacin is High Blood Pressure, so that's why its taken for break thru instead of daily. The verapamil is like a HBP med but used for a veriaty of ailments. I think is works because it stops the pressure change in the blood vessels.
The trigeminal autonomic cephalgias (TACs) are a group of primary headache disorders characterised by unilateral trigeminal distribution pain that occurs in association with prominent ipsilateral cranial autonomic features.1 The group comprises cluster headache, paroxysmal hemicrania, hemicrania continua, and short lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing (SUNCT syndrome).
Actually tree, I saw your post about the TAC’s and that’s what got me to thinking it must be related to my TN. You know we have to research and diagnose ourselves these days. :(. It was just when it came back the frustration of no one listening to me came back. I have an appointment in two weeks with a new neuro. It’s kinda my last ditch effort to figure out what to do. My last neuro told me there was no way I had TN ON BOTH sides as it’s just too rare. Then told me he wouldn’t adjust my meds anymore that if I was in too much pain that I needed to just go to the ER. I started thinking that it maybe WAS all in my mind. So grateful for this site. I’m getting some hope back. Glad to know others have the bubble feeling too. It’s so strange!
O, you got that answer. The one that says I do not want to figure out what you have and now you are a pain. I fired my neurologist for not being able to further his education.
So I just ended up asking my pain specialist for a trial of Indomethacin because my GP was out of town. The trial worked!! to my surprise but not surprised in some ways because I already new high dose's of ibuprofen helped. Since the Indo worked but raised my BP, which is historically perfect, my GP put me on Verapamil to see if it would maintain them keep them at a low roar. It took 2 weeks to see but it does work. I can feel them running in the back ground, and when they spike I take some Ibuprofen or Naproxen or Indomethacin in that order to keep from being hit harder. I also get Botox injections about every 4th month.
I also get a sensation of tiny bubbles popping with a spray of water on my face often. They do not hurt but are a strange sensation. I Have many other strange sensations that happen prior to a headache attack.
tinah276 said:
Actually tree, I saw your post about the TAC's and that's what got me to thinking it must be related to my TN. You know we have to research and diagnose ourselves these days. :(. It was just when it came back the frustration of no one listening to me came back. I have an appointment in two weeks with a new neuro. It's kinda my last ditch effort to figure out what to do. My last neuro told me there was no way I had TN ON BOTH sides as it's just too rare. Then told me he wouldn't adjust my meds anymore that if I was in too much pain that I needed to just go to the ER. I started thinking that it maybe WAS all in my mind. So grateful for this site. I'm getting some hope back. Glad to know others have the bubble feeling too. It's so strange!
have you tried a chiropractor? the position they have you on the table in might have got you out of alignment, that can cause headaches. hope you find an answer
I have seen a physical therapist. These headaches are weird not normal headaches. It’s like I have a brain core and it’s a brick. Then stabbing pains all over. I don’t know what they’re called, but you know those glass balls you can buy that light up in the middle and when you touch the outside it’s like lightening wherever you touch? That’s my head. Except it’s random places not where I touch. They aren’t migraines or regular headaches. That’s the most frustrating thing to get across to drs who dismiss it as hormonal migraines.
Chiropractic helps me temporary until I fall back out of alignment. The adjustments mostly help to relieve the tension and pain in my arthritic neck. Helps with my compression at c5&c6. Often but not always they will give some relief to part of my headaches.
Alot of people report that chiro hurts or made them worse. Sometimes my adjustments are painful but the temporary pain is worth the relief for me.
CAM (complementary alternative medicine) treatments can be a very helpful weapon in the war on pain.