Hello Again. Pain Increase In Back Of Head When Doing Activities?

General
1

I recall reading (somewhere) that it is common for patients of Chiari Malformation Type 1 to have increased pain in the back of their head (base of skull) when performing any type of physical activities. I noticed this yesterday when I was floating in the pool and tried to swim.

I am a bit confused on certain symptoms at this point, because on one side I have a dislocated left jaw, which of course would cause severe pain. TMJ patients I know, out on Facebook groups, have told me that they also have eye pain and back of the head pain, plus trouble lying on a pillow.

I sent my request into 2nd MD for a second opinion as 2 members out here mentioned (thank you for mentioning it btw). I hope they can perhaps take a look at my MRI's...I feel like I am wasting time with the doctor's I am seeing. I just suffered yet another severe migraine. They are so bad my speech begins to slur and my body feels extremely weak - not tired - but very weak. I always feel tired though. Tired being just feeling of fatigue whereas weak being the inability to move properly. I've been asked by my pain management doctor if I have ever had a stroke.

Anyway, I was curious if anyone else has these symptoms. Also, how common is it to have TMJ problems alongside Chiari?

Thanks again,

Robby

2

When you have Complicated Migraines, they have Stroke symptoms. They can also turn into a stroke. I was advised after talking with another member to always go to the ER when I have one. As far as TMJ or Bruxism, they are both very common with Chiari Members. We also have Members that have popping & jaws that lock. It hurts very bad. A second opinion is always a good thing. Let us know how that works out.

Tracy Z.

3

The last time I went to the ER was because the left side of my face felt numb, my throat felt very tight, I felt like fainting, my palms and soles of my feet were sweating, my chest was hurting, etc and I had developed a large red lump behind my ear. Initially, they took my vitals at front, which were normal, I said, "That's good." Then I see the ER doctor, explain all of it again, and he shrugs, says, "So what exactly is the emergency?" I told him I thought I was having an allergic reaction and he asked if I needed pain meds - I said, "No I am fine." He literally did not treat me. I sat there for three hours without any type of treatment, except for blood tests that I knew would come back negative. My mouth was coated white, which is from a severe Candida reaction as I have had allergy testing (which I showed my results to him). I asked him if he could test for that more extensively. He refused. He tested for strep throat instead. I never once told him my throat was hurting. I did get better on my own, thankfully, but going to the ER was a waste of time. Now I am left wondering if I seriously need to report this doctor. I did NOTHING wrong. I just showed up to get treated for an allergic reaction. If I report him, I may damage my relationship with a hospital 5 minutes from my house. If I don't, his abusive cycle probably will continue.

So that is my recent ER story and if I went over migraines, they'd probably never treat me. What makes me even more upset is when I was discharged, the nurse told me, "You can't have pain pills from your pain doctor and the ER, understand? We treat only acute pain here, not chronic pain. So next time you come in, we won't treat you." What the hell? I just told the ER doctor I was fine on my pain meds - I was here for an ALLERGIC REACTION. I left without saying a word. I was too tired and exhausted to argue any points. I am so tired of being treated this way, doctor after doctor. It's either they are complete a-holes or they say, "Go see this specialist now. I can't help you." Then I go to the specialist they recommended and they say, "You need to go back to the Neurologist." But it was the Neuro that recommended YOU and he said he wouldn't treat me.

Anyway, it's been a nightmare. I finally have disability and have no clue why I even tried to get it. I don't want to merely survive - I'd rather live comfortably. That in of itself is a monumental task.

I am trying to get a second opinion. We'll see what happens. I am in AZ and the Chiari Institute is on the East Coast, as I recall. So that doesn't help much.

I'll look up the term Complicated Migraines now. I know about Hemiplegic(sp?) Migraines, but perhaps those are the same things. Thanks for the info.

4

Robby,

I often get throbbing pain when I bend over. I get dizzy and very uncomfortable. I know if I do it too much I will pay for it later. I also have terrible TMJ. The left side of my face near my jaw is swollen quite a bit. I have worn down my teeth and broken quite a few of them. Before I was diagnosed with Chiari I thought that most of my symptoms were from TMJ. The combo makes dental work a nightmare. When I get a bad headache it inflames all the nerves in my jaw on the left side , hurts behind my ear and makes my eye hurt. Do you have any medication for your headaches? I take Zomig and it helps. I also rub Arnica oil into the muscles along my jaw, face and neck.

Finding a good doctor is difficult but worth it. So many doctors treat us like we are kooks or hypercondriacs ect.. It makes it all the harder to go through the process of finding one. If you've got a doctor recomendation that's a good thing. I hope they agree to see you and you find some relief. In the meantime we are here for you.

Wendy

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I had a similar experience last week at the ER. It was very upsetting, especially when you feel terrible. I have what they are calling Trigeminal Neuralgia. I am not sure if that is the right dx or not anymore. That was the very first symptom that led to an MRI and then the dx of Chiari. I had decompression surgery in December and still have chronic pain in the left side of my face, neck, throat and above/around my eye. My NL finally suggested that I see my NS again for a consult on a balloon prodecure to damage the nerve. That is supposed to stop the pain. My ER visit was for the pain in my face, dialated pupils and leg weakness. The ER doc wanted to do an MRI, but I had been there already for 7 hours and he wanted me to stay for 4 more until they could get me in. All day with no treatment, nothing to eat or drink and all the chaos was just too much. I ended up leaving....against medical advice. I just wanted to go home and rest. It seems that when my head/neck is manipulated in some way it stirs up symptoms. The ER doc did say that my symptoms were in line with increased intracranial pressure. So, it would be safe to say that the manipulation to my head/neck 4 days prior (balance center testing/eply manuver) aggrevated symptoms and then I had increased pressure, which caused the weakness etc.

I read these posts and I feel like yelling at these doctors that treat everyone so poorly. It is so frustrating to have Chiari and have to fight for treatment. It is really just a shame that these docs don't have more education on Chiari. We already feel awful enough. I hope you are having a better day.

6

Robby,

I have severe TMJ and it is extremely painful! No pain relievers seem to help. I have been seeing a TMJ specialist for the past 2 yrs. He made me a splint to wear at night and a metal one that I wear during the day. If I wear them 24/7, I feel pretty good. I do have a lot of Chiari friends both here and on facebook that also have TMJ. I think it is very common for us.

As far as pain in the back of your head - have you been decompressed? I do think this, too, is quite common. At least it is for me and others I have talked with. You should probably pursue a 2nd opinion if you are not satisfied with your current doctor(s).

Carla

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I also suffer from TMJ. It is sometimes hard to tell whether pain is coming from that or chiari.

Have you contacted Dr. Oro? He is supposed to be one of the best and is in CO which is a lot closer to you than the east coast.

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Thank you again for the replies. There's too much support out here ;)

I have a moment with decreased pain, probably due to anti-inflammatory foods (if I was you, I'd google it). I know it won't last long, maybe an hour, but I am able to type out here. I was in so much severe pain when posting the original post (OP) and I never usually complain. I definitely think I have Complex Migraines because I am like that reporter after the Grammy's. Remember her? Here's the video: http://www.youtube.com/watch?v=IG7NuH5QTdE

@Wendy, I'll look up Zomig. I have never heard of it. Thanks for mentioning it.

@Nicole, I know it is insane how some of these doctors abuse their patients - and yes, I consider abuse. I should've just left like you did. I felt like it. I am not seeing anymore Chiro's - I have had bad experiences with them.

@Carla, it is good to know that your splint is helping you. How bad of TMJ was it? Was your disc displaced or jaw dislocated? Also, was it a complicated splint you used? I have no been decompressed and I don't have a Chiair diagnoses, though many Chiari patient's looked my MRI and said that they think I do (from these very forums btw).

@Anglyn, Dr. Oro is out of state and I don't have the money to travel out of state. I have no idea if insurance would help with this or not, but just doing a complicated splint through my insurance is a difficult process. I didn't know he was in CO though - I'll see if I can reach out to them.

Thanks again for the replies.

9

Hi Robby, I have a very physical job (which I love!) but there are certain things I can do and those I can't. I know that I would never try swimming because I made that mistake and really paid for it with a nasty headache. I grow perennials, most of them in 1 gallon pots, and I can lift 6-7 pots in a crate with no problem. But, if I have to kneel or do anything while I'm looking down for any length of time I get bad pains up the back of my head and pressure! If I have to sit on the ground my legs go numb and my arms too. I can mow grass for hours at a time with only slight numbness in my hands. I can push carts but I cannot pull or weed. I manage my pain during the day by being very busy and physical but, boy, do I pay for it at night. I do this to prove to myself that the Chiari has not gotten the best of me and so that I don't have to eat pain medication all day. I do have to take pain meds at night.

I think you have to figure out what you can and can't do and then do it! My family doctor told me that as long as I can do the work I should keep doing it. She told me that keeping myself moving is one of the best things I can do. I talked to her about what I was doing because I was worried that I could be hurting myself or making the Chiari worse by being so physical. If I feel any pain or pressure or numbness, I stop doing what I'm doing or I change positions.

I don't have TMJ but I have cracked 3 of my teeth from clenching them in pain. I also get sharp pain in my ears (both) and behind my left eye and numbness on the left side of my face.

It might be time for a CINE MRI to see how the fluid is moving around (or not moving) in your head. I think that any movement or exercise that you can do will ony benefit you. Be smart and listen to your body! Terri in MN

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I have TMJ and had surgery for that 20 years ago. It helped a lot. Yes consult Dr Oro. I come from Texas to see him. He is great. I have migraines like you speak of. They mimick a stroke feeling on the left side. I end up in the hospital a couple of times because I have been told that that type of headache called a complex migraine can lead to a stroke. Be careful and take care.

11

@TerriMN, I hear you. I've figured out what I can and cannot due. I tried working as, of all things, a bad boy at Kroger when this all started (I was a teenager then). I was in such severe pain, I just stood there and did not talk to anyone. One a-hole smacked the back of my neck/shoulders - of ALL THINGS - just for the fun of it. Knowing me, I hit him back as hard as I could. Guess that's how it works in this life. I never back down. Didn't mess with me again, thankfully.

I worked that job, trying my best, and one day I noticed a bunch of cold water bottles up front - just for me. I thought to myself how kind these people were. They knew how sick and in pain I was, but not one of them said anything; they did give me that moment to get that water though! lol :) After 2 weeks, one day I was working and went into a severe migraine, and couldn't handle it anymore. I was already absent-minded in the simplest of things and had broken up an entire 12 pack of coke in front of a customer. Now I am on disability.

I started out drawing when I was initially ill, tried my hardest to focus on my artwork, but your mind can only take so much pain. Pain is like an ocean. You think you can hold it back. There's certain storms you can weather. And certain storms you have to build levees to prevent any flooding. I can't draw any longer and certainly cannot focus. Simply hearing someone laugh loudly is painful. Looking at the wrong type of light indoors is painful, let alone the sun. And this isn't even the constant, constant pain I am talking about, which I deal with every moment.

Right now I am listening to good music and typing (of course) which is what I can do. And I'll try to do what I can do with it.

@Alyson, I'll try to contact Dr. Oro. I've dealt with these migraines on my own, which is probably "stupid" but not one doctor has uttered the words "complex migraines." Why? Are they this uneducated? This is ridiculous that this is the first time I am finding out about it and I have been to the "Top Neurologist in Arizona," according to my PCP.

I had yet another migraine these morning (they usually come in 2's) and it was very difficult to lift my left arm. I've spilled several things so far so I am looking at a doctor that treats complex migraines, but that seems to be Mayo Clinic's specialty. I'll search around.

You all take care too.