The relationship of TN and Headaches; how many others have headaches with your TN

1

I can share with you all what I have been studying up on to be able to help my self find the correct treatment for my illness's. I am not a doctor but am my best advocate.

I have been working on the complexities of my illness systematically with process of elimination. The MVD took enough pain away that I could now make out that there are several origins of pain. My migraines are less intense and less frequent. But I still have several headache pains daily. The ONB took away my scalp neuropathy for a few weeks, but did not take away the roaming spikes of neuralgia pain/headaches all over my head. I have a lot of swelling going on in my face and eyelids and having problem's with sleep and Central Nervous System problems to boot. Sometimes my head swells so much the side of my face will engulf my eyeglass ear piece and when it gets super bad I can not lye down on my head. My Surgeon pointed out that the swelling was Autonomic. Light, noise, smell, activity, stimuli and movement contributes to headaches. But that was all he had to offer.

So now I have figured out that I have Bilateral TN1 and 2, Bilateral ON, and Trigeminal Autonomic cephalgias (TACs) are headaches/facial pain.

I was wondering how many other people have bad headaches including migraines along with your Trigeminal Neuralgia/Neuropathies??

My face pain can contribute to my headache or my headache can contribute to my face pain. The same triggers for TN activate neuralgia type pain in my headaches.

Here is some useful information that helped me determine which TAC syndrome I have. I think I might have more than one going on.

http://bjp.sagepub.com/content/early/2012/08/16/2049463712456355.full.pdf

Here are a few paragraphs from the British Journal of Pain above;

"Trigeminal autonomic cephalgias (TACs) are primary

headaches with a common clinical phenotype consisting

of trigeminal pain with autonomic signs, which

may include lacrimation, rhinorrhoea and miosis. The

International Headache Society’s (IHS) classification

includes cluster headache, paroxysmal hemicrania and

short-lasting, unilateral, neuralgiform headache attacks

with conjunctival injection and tearing (SUNCT).

1

Hemicrania continua, although classified separately, is

thought to be related to TACs and will be briefly

described.

There is consistent evidence that patients

with TACs continue to suffer from delayed diagnosis

and inappropriate treatment, in spite of the involvement

of secondary care specialties.

2 It is therefore imperative that we improve the clinical recognition of

these entities.

This section deals with TACs in general, although there

are subtle differences between them. The current

pathophysiological model attempts to explain the three

major features of TACs: trigeminal pain, rhythmicity

(particularly in cluster headache) and autonomic signs.

Trigeminovascular system.

The distribution of pain in

TACs largely implicates activity of the trigeminal and

upper cervical nerves. Central to the pathophysiology of

neurovascular headaches is the trigeminovascular system;

trigeminal nerve activation can explain pain and

may initiate some of the autonomic manifestations."

note: the medical terminology can be challenging. the more you read the more you will understand. I like to copy paste the word I want to understand into Google and find the definition.

Other helpful links to related to TACs;

http://jnnp.bmj.com/content/72/suppl_2/ii19.full

http://www.news-medical.net/health/What-is-the-Hypothalamus.aspx

http://en.wikipedia.org/wiki/Hypothalamus

http://www.achenet.org/resources/serotonin_and_headache/

http://en.wikipedia.org/wiki/Parasympathetic_nervous_systemhttp://biology.about.com/od/organsystems/ss/central-nervous-system.htm

http://en.wikipedia.org/wiki/Autonomic_nervous_system

http://jnnp.bmj.com/content/76/3/301.full

Bellalarke added a great link:http://www.ncbi.nlm.nih.gov/pubmed/21568653

2

I have migraines with my tn and as you said sometimes my migraines can trigger my tn or my tn can trigger my migraines. Occasionally they just start triggering each other and ramping up the pain so bad I end up in the hospital. I in fact have a headache with tn as I’m typing this and it’s really making me feel awful.

3

Oh my goodness. You are seriously an answered prayer. I had a mvd in April 2012 and I had no pain for 6 months. Then in oct of that year I got a ridiculous headache and it never stopped. I’m going on a year of constant headache. The severity fluctuates but it’s always there. I’ve been to 4 diff neuros and they dismiss any link to my tn or my surgery. I have an appt with a headache specialist but they couldn’t get me in til Thanksgiving! I have been so frustrated! The past two months I’ve started having pains go through my jaw again. For whatever reason I thought about coming on here to see if I could get any other info and saw your post. I feel so much better seeing as I’m not crazy and there is something to my pain. Thank you for posting!!

4

You are definitely NOT CRAZY even though its all in your head.....LOL... :) I hope you can take this knowledge with you to your appt. So the doctors can not tell you its not true. I am so sorry you have to wait so long. I have been there many times. Good doctors often have a waiting list. My pain specialist is one of them. Its always good to have a back up plan for when help/or procedure is far off.

I just recently did a medication change for a couple of reasons;1 what I was taking was not helping anymore, 2 I was really dizzy, 3 needed to break pain cycle. I broke the pain cycle 1st with a small dose of morphine. Then I found my Baclofen was causing low blood pressure causing me to be extremely dizzy after I stopped baclofen I still had a little more dizzy and the headache was out of this world. So I stopped my Tramadol and am only taking Ibuprofen for pain. At the same time I began taking a very small dose of Lamotrigine which is helping with the intensity and frequency of the headaches. I also get Botox injections all over my head in the bad areas, and this time she put it at the Occipital Nerve areas like an ONB.

Healing Together, Tree

tinah276 said:

Oh my goodness. You are seriously an answered prayer. I had a mvd in April 2012 and I had no pain for 6 months. Then in oct of that year I got a ridiculous headache and it never stopped. I'm going on a year of constant headache. The severity fluctuates but it's always there. I've been to 4 diff neuros and they dismiss any link to my tn or my surgery. I have an appt with a headache specialist but they couldn't get me in til Thanksgiving! I have been so frustrated! The past two months I've started having pains go through my jaw again. For whatever reason I thought about coming on here to see if I could get any other info and saw your post. I feel so much better seeing as I'm not crazy and there is something to my pain. Thank you for posting!!
5

I fully understand. I actually prefer talking on the phone now a days. Even though it aggravates my TN. Some times reading and writing can send me to bed. I have not been able to participate on this site like I want to because of this. Also has slowed down my research efforts.

Take Care my friend, Tree

HCal said:

I have migraines with my tn and as you said sometimes my migraines can trigger my tn or my tn can trigger my migraines. Occasionally they just start triggering each other and ramping up the pain so bad I end up in the hospital. I in fact have a headache with tn as I'm typing this and it's really making me feel awful.
6

Tree, thanks for all the info. When the weather turns here I will follow them up (currently enjoying perfect weather heaven). Here’s what I can offer to the discussion: http://www.ncbi.nlm.nih.gov/pubmed/21568653

It seems MVDs might not be so successful with TN sufferers who also have autonomic problems.

Are you going to have further Botox for scalp? Sometimes my scalp pain is what drives me batty.

Keep Heart
Bellalarke

7

I have Hemicrania Continua which has symptoms of ATN & cluster headaches with a continuous background headache with severe exacerbations. It completely responds to Indomethacin so if this is what you have all symptoms caused by the HC will go in a few days. Problem is, Indo is very harsh on the stomach so cant really be taken long term. I have to have very high doses to control my HC so I wont tolerate it for long. I have Botox now, which is really helping and I don't need to take the Indo so much. I also take Lyrica which had stopped working but combined with Botox is also helping. I actually get no pain days now which is amazing after 8 years of constant pain. You need to see a headache specialist as your situation seems very complex, I hope you get some answers soon. Unfortunately, it is still very difficult to get a proper diagnosis for these conditions and the answer it to do your own research which you have done. I only got diagnosed after doing my own research and telling my GP what I had.

8

Migraines come from the TN. Also if you have TN in V1 it is very rare, signaling more problems. According to a headache neurologist specialist Dr. Cowen from Stanford University.

It was not until after my MVD that my surgeon told me what I was experiencing was Autonomic.

My MVD stopped 3-4 migraines per week, it lessened the other headaches and face pain 50%on bad day 70% on good day. Some great days lately with almost no face pain. I intend to have another on the right side someday.

So an MVD can help. I was living at an almost constant #10 on the pain scale. My surgeon and I knew it would not fix everything and our expectations were 50% pain reduction. Which has been achieved and considered a success by both of us.

Thank you for the added info, the more the better.

I usually get the Botox about every 4th month and I like to use CAM therapies also. It is worth the extra pain because it works for several months. It really helps.

Hugs, Tree

Bellalarke said:

Tree, thanks for all the info. When the weather turns here I will follow them up (currently enjoying perfect weather heaven). Here's what I can offer to the discussion: http://www.ncbi.nlm.nih.gov/pubmed/21568653

It seems MVDs might not be so successful with TN sufferers who also have autonomic problems.

Are you going to have further Botox for scalp? Sometimes my scalp pain is what drives me batty.

Keep Heart
Bellalarke
9

When I explained what I had discovered, I told my GP. He wrote back saying I deserve I Noble Prize for figuring it out.

My question is can a person have more than one TAC. My symptoms match both cluster and sunct/suna. I am still looking for a headache specialist. For know I have exceeded all my doctors knowledges.

I have recently tried Lamotrigine. I am responding to it in a weird way so I may need an add on or have not found the right one or this is as good as it gets(which is cope able now). I noticed relief with the first pill dose of 25mg. taking it every other day I noticed that the day I do not take it I have less pain then the day I take it. So I decided to stay at this dose for now.

Had new Botox last week waiting for it to kick in. Always take 2.5 weeks for me. She did two vials this time giving me an ONB with Botox also. I am sure it was at least 20 injections. OUCH!

How did you and your doctor figure out yours was HC? Just curious it may help me and mine figure it out.

Thanks, Tree

stephyb said:

I have Hemicrania Continua which has symptoms of ATN & cluster headaches with a continuous background headache with severe exacerbations. It completely responds to Indomethacin so if this is what you have all symptoms caused by the HC will go in a few days. Problem is, Indo is very harsh on the stomach so cant really be taken long term. I have to have very high doses to control my HC so I wont tolerate it for long. I have Botox now, which is really helping and I don't need to take the Indo so much. I also take Lyrica which had stopped working but combined with Botox is also helping. I actually get no pain days now which is amazing after 8 years of constant pain. You need to see a headache specialist as your situation seems very complex, I hope you get some answers soon. Unfortunately, it is still very difficult to get a proper diagnosis for these conditions and the answer it to do your own research which you have done. I only got diagnosed after doing my own research and telling my GP what I had.

10

My TN2 and chronic migraines appeared out of nowhere one day. At first, TN was usually my biggest issue with either one of them irritating the other, but now after my MVD in March, migraines and nerve pain just around my eye are the issues. I have been receiving Botox injections since 6 months into it. Of course, besides a gazollion meds as y'all are familiar with! I still have headaches almost daily that don't explode into migraines, but I think they usually are med induced. My Botox lasts for about 7 weeks and I can only get them every 10 weeks. So there is a few weeks in between that I am confined in my dark quiet bedroom.

11

My research time has just been shortened…got call today that MVD on Sept. 20th at 7:30 am…eek!



Tree69 said:

Migraines come from the TN. Also if you have TN in V1 it is very rare, signaling more problems. According to a headache neurologist specialist Dr. Cowen from Stanford University.

It was not until after my MVD that my surgeon told me what I was experiencing was Autonomic.

My MVD stopped 3-4 migraines per week, it lessened the other headaches and face pain 50%on bad day 70% on good day. Some great days lately with almost no face pain. I intend to have another on the right side someday.

So an MVD can help. I was living at an almost constant #10 on the pain scale. My surgeon and I knew it would not fix everything and our expectations were 50% pain reduction. Which has been achieved and considered a success by both of us.

Thank you for the added info, the more the better.

I usually get the Botox about every 4th month and I like to use CAM therapies also. It is worth the extra pain because it works for several months. It really helps.

Hugs, Tree

Bellalarke said:

Tree, thanks for all the info. When the weather turns here I will follow them up (currently enjoying perfect weather heaven). Here’s what I can offer to the discussion: http://www.ncbi.nlm.nih.gov/pubmed/21568653

It seems MVDs might not be so successful with TN sufferers who also have autonomic problems.

Are you going to have further Botox for scalp? Sometimes my scalp pain is what drives me batty.

Keep Heart
Bellalarke

12

Hi Tree

Doctors and specialists were no help in my diagnosis. My condition worsened considerably last year so I knew I had to do something. On this website Red suggested I had some symptoms of Sunct headaches, which I had never heard of. I never considered I may be suffering from a type of headache. So I looked into this further and Sunct headaches did not match my symptoms completely so I investigated further and found out about TAC headaches and then came across Hemicrania continua. I couldn't believe what I was seeing, the symptoms matched mine completely and I realised this must be what I have. I went to my GP who as usual thought I was insane saying this is too rare I couldn't possibly have it. Infact, I since found out he referred me for psychictric help as he clearly though I was out of my mind. I had to really fight my corner and insist they give me Indomethicin, they gave in. Within 4 days of taking Indo my symptoms disappeared. I then went to see a headache specialist privately, Dr Matharu in London and he confirmed the diagnosis. It is possible to have more than one type of headache at a time and you definitely need a headache specialist to help you figure out if you do have more than one type. At least I only had one to figure out. We should not have to diagnose ourselves but it seems that getting a diagnosis from a doctor is impossible. The specialists had 8 years to work it out but everyone I saw, and I saw many, got it wrong. Keep doing your own research and be prepared to fight like hell to make yourself heard

13

Omg!! Bellalarke, That’s wonderful. Relief is near. That is a short time to prepare but it will work out.
Cheers, Tree

14

Pinkdpx-I am sorry you suffer from this illness, because it is really no fun and can suck the glad right out. I have had my headaches for as long as I can remember, worsening in my early 20's. Every couple of years the pain would kick up a notch. When I was younger the doc's could never get passed hormones or allergies. So I was treated for both for years, with no change really to the patterns or intensity. Until this stuff took over my nervous system I was coping with my misdiagnosis. I finally broke after long time family stress pushed my pain over my coping point. Then I was too sick to diagnose properly still. Glad my surgeon suggested process of elimination or I would have never figured out this merry to round.

I am glad that you also enjoyed some relief from your MVD. A few months ago I was blessed with another flare up. Spent a couple of months sleeping in a chair and hanging on to walk from dizzy low blood pressure and my headache just out of control, requiring many quiet dark sessions.

I decided to take a look at my meds, a neuro suggested that Baclofen was known to create this side effect. So I cut that out slowly with withdrawals. But I was still a little dizzy with an added headache. So I cut out Tramadol which helped cut down the extra headache. I switched over to Lamotrigine and Ibuprofen. With Xanax or Morphine for ER. Doing better, but slow this week from Botox.

Thanks for your report

Take Care, Tree

pinkpdx said:

My TN2 and chronic migraines appeared out of nowhere one day. At first, TN was usually my biggest issue with either one of them irritating the other, but now after my MVD in March, migraines and nerve pain just around my eye are the issues. I have been receiving Botox injections since 6 months into it. Of course, besides a gazollion meds as y'all are familiar with! I still have headaches almost daily that don't explode into migraines, but I think they usually are med induced. My Botox lasts for about 7 weeks and I can only get them every 10 weeks. So there is a few weeks in between that I am confined in my dark quiet bedroom.

15

Thank you Stephyb! this is very helpful information to me. Thank you for your support, it feels very validating. This whole illness is like a war on pain and I have had to fight like hell to get where I am at. Its so exhausting when you are already so sick. But chins up! Tenacity will prevail!! I will not let this thing kick my rear!!

I may be stuck with working with my GP, which is not the end of the world. I have trained him well. :) I have Kaiser insurance, which can be good and bad. The good is the cost. It is difficult to find the "specialist's" with in the HMO system. But I have begun the process. I am lucky to have a pain specialist who is very good at what she does and has some tricks for headaches, but she can not help decipher the mystery.

I found the British Journal of Pain to be the most help in breaking down each syndrome. My problem is I match cluster w/migranous feature, migraines, clusters, sunct, Paroxysmal Hemicrania,. which could make it Cluster tic syndrome. OMG! Really?.... If I had to pick I would pick Cluster and SUNCT.
So if I can not get into a specialist soon I will convince my GP to let me try Indomethacin.

Yesterday I had a migraine coming on fast from a trip outside with out my sunglasses. Ice picks right to the brain then the pain spikes all over my scalp start hitting louder and louder. So I took a spray of Sumatriptain to see if it would work this time. It kicked it at 30mins but only lasted part of the hour. Then the pain rebounded. I had not been using the Sumatriptain because the last few bad flare ups it really has not work. This proved that again.

On with the day--Charge!

Cheers, Tree


stephyb said:

Hi Tree

Doctors and specialists were no help in my diagnosis. My condition worsened considerably last year so I knew I had to do something. On this website Red suggested I had some symptoms of Sunct headaches, which I had never heard of. I never considered I may be suffering from a type of headache. So I looked into this further and Sunct headaches did not match my symptoms completely so I investigated further and found out about TAC headaches and then came across Hemicrania continua. I couldn't believe what I was seeing, the symptoms matched mine completely and I realised this must be what I have. I went to my GP who as usual thought I was insane saying this is too rare I couldn't possibly have it. Infact, I since found out he referred me for psychictric help as he clearly though I was out of my mind. I had to really fight my corner and insist they give me Indomethicin, they gave in. Within 4 days of taking Indo my symptoms disappeared. I then went to see a headache specialist privately, Dr Matharu in London and he confirmed the diagnosis. It is possible to have more than one type of headache at a time and you definitely need a headache specialist to help you figure out if you do have more than one type. At least I only had one to figure out. We should not have to diagnose ourselves but it seems that getting a diagnosis from a doctor is impossible. The specialists had 8 years to work it out but everyone I saw, and I saw many, got it wrong. Keep doing your own research and be prepared to fight like hell to make yourself heard

16

I too am scheduled for surgery soon. Oct 14th. I’ve had two failed mvds and one failed gamma knife so my surgeon is going to go in, separate the nerve fibers and snip the ones that are causing me problems. I will probably be numb in some spots, although he said some people don’t even get numb and they have no idea why. He should be able to get me off all of my meds which are Lao messing with my nervous system big time. I can’t wait to be done with it all. The stress of waiting is causing me a horrible migraine and tn episode though.

17

My current surgeon had me see his in office neuro the first time I went to his office and the first thing they tried with me was the indomethacin to make sure it wasn’t cluster headaches before proceeding. It did nothing for me unfortunately. The great news is Dr. Kim is a face pain specialist and he told me about two very recent cases he did that were extremely similar to mine. One girl about my same age came from North Carolina to see him and he sent her home pain free! I’m ready to have my life back!

18

Hcal-I am so excited for you.!! :) I am so glad you have good help around you and that you know that you have the correct diagnosis.

For me I am glad I read in the British Journal of Pain where it said: Trigeminovascular System pg 2.

end of last paragraph is saying that- Vascular changes are therefore considered a buy product of nerve impulses opposite to normal conduction activation of the trigeminovascular system.

"Increased levels of calcitonin-gene-related peptide

(CGRP), nitric oxide (NO) and vasoactive intestinal

peptide (VIP) in the cranial circulation in TACs indicate

activity of the trigeminal and parasympathetic

nerves.

10,11 Moreover, successful treatment with indomethacin

or oxygen administration normalizes levels of

both CGRP and VIP in CPH and reverses the elevation

of CGRP in cluster headache.

12 Curiously, pain

will often continue following trigeminal nerve sectioning."

So that's why I really want to know what my dx is So I know which drug is best or surgical procedure if that fails.

Keep us posted on your surgery!

19

Yeah I am glad I found such an amazing team of docs that cover all bases and try to do the least invasive things first. I will keep everyone posted for sure!

20

Stephyb-I wanted to report back that I have done a trial of Indomethacin and it worked well 85%. But of course can not take it long term my BP was way too high. My GP put me on Verapamil for maintaince. Took a few week to see how it would due. It works well at about 70-85% of the time with the only side effect of extra low BP. Then I take Ibuprofen, Naproxen or Indomethacin in that order depending on severity of spikes. My GP and I are still unclear how many or which one I have, but I am ok for now with that. I would have to pay out of pocket to see the best of the best head doc's here.

They are running in the back ground and I still get some autonomic symptoms and sensations prior and post attacks, but I can function so much better now. By treating my 3 illness's differently I have made so much progress.

Trooper On!