Positional Headaches

[spp-fan]

Hello.  I have been googling to try to find somewhere to chat with other headache sufferers like myself, and I cam across this place. I am not sure if it is related to cluster or not. But just looking for some options, or some other ideas. 

Back in October I had a sex headache. At orgasm I got a thunderclap headache up my neck and throbbed in the middle back of my head. if you feel the back of your skull it is right in the middle where  it is kind of pointy. It jumped up to a 9/10 out of nowhere. I was about to call an ambulance. I was really scared. Over the course of an hour it dropped down to about a 3. Over the next few days I would have headaches on and off. Well I have been left with is positional headaches. When my head is in a forward and looking up position for a few minutes, I get a throbbing headache at about a 7-8/10 in the back middle of my head.  If I lay down, within 10 minutes it goes away, without meds. When I say forward and looking up. Think of sitting at the dinner table, leaning over your plate eating, but look up to talk to someone across from you.  It seems most of the times I get these I am in fact sitting at a table eating dinner with my family or out at a restaurant. Happened last weekend we were at a wedding. Eating and talking with the other guests, it just popped out of nowhere.

I have had a CT scan of my head and neck with contrast. I also had a MRI of my head in December. All came back clear. I had an Occipital Nerve block, and it didn't seem to do much, if anything. I have been put on different types of meds. Carbapenapine, gabapentin,  baclofin, and recently Topamax.  The Carba made me dizzy same with the gabapentin once I went over 1200 a day, I came off that slowly and then went on  Topomax but it made me dizzy and cold and just stopped it today after a week of the side effects. 

The Neurologist ordered a MRI of my neck, and I am awaiting insurance approval. I am also going to call them later to get something to replace the Topamax. I feel like maybe when I had that original headache it did some kind of damage, maybe a muscle contracted and is now pinching a nerve when I put my head in that position? I don't know, but I am so cautious of the position of my head. I had to slouch in my chair at work to keep my head straight in line with my monitors. But I don't know where to go. I am 39 and have kids that are 8 and 5, I feel awful, I cannot sit at the table with them, for fear of headache. I can't be as active as I once was with them.  Yesterday while my wife took them to the movies, I just laid in bed and cried all day. Just so lost. Not sure if I should seek another Dr, or stay the course with the one I have now.  I did start using an app called migraine buddy. If you don't have it, I suggest it for any type of headache tracking. 

Not looking for answers but maybe some questions I should be asking that I am missing. Or anyone else have a similar experience.

[Cast Iron]

Hello SPP-Fan

Welcome to this forum, although not good that you have found it as CH cluster headache is a serious thing if you have it.

My first thoughts are to see if you have one or more of the following signs or symptoms: 

• Excruciating pain that is generally situated in, behind or around one eye, but may radiate to other areas of your face, head and neck
• One-sided pain
• Restlessness
• Excessive tearing
• Redness of your eye on the affected side
• Stuffy or runny nose on the affected side
• Forehead or facial sweating on the affected side
• Pale skin (pallor) or flushing on your face
• Swelling around your eye on the affected side
• Drooping eyelid on the affected side

Diagnoses of CH is done by eliminating possibilities while taking into regard the above symptoms. Especially the first and second may be a first indication for cluster headache, along with a one or more of the others. People experience sometimes different signs because CH can morph over the years, but as a starter you can see if the above applies.

Seriously hope it is not CH and take care the next time you have sex.

 

 

 

 

[spp-fan]

I don’t think they will find much with the MRI. Since I wasn’t in a trama or accident. But I am maybe hoping they find some inflammation maybe pressing on a nerve or something like that. I really only get the pain when my head is in a forward position. 
 

I don’t really have many of the above symptoms. When I don’t get a chance to correct my head at the onset of a position related headache it will end up radiating up to the front of my head. I do get migraines and this positional stuff is triggering them. 
 

the past two days since I have woken up with a sinus pain and pain in the back of my head.  After I get up and moving around the pain goes down without meds. But never goes completely away until I take a Advil cold and sinus pill. 
 

It seems I don’t really have CH. But I also don’t know of any other headache forums or communities. To share and reach out for help. If anyone knows any I’d be happy to listen.  Thanks. 

[trjonas]

On 2/5/2020 at 10:37 AM, spp-fan said:

I don’t think they will find much with the MRI. Since I wasn’t in a trama or accident. But I am maybe hoping they find some inflammation maybe pressing on a nerve or something like that. I really only get the pain when my head is in a forward position. 
 

I don’t really have many of the above symptoms. When I don’t get a chance to correct my head at the onset of a position related headache it will end up radiating up to the front of my head. I do get migraines and this positional stuff is triggering them. 
 

the past two days since I have woken up with a sinus pain and pain in the back of my head.  After I get up and moving around the pain goes down without meds. But never goes completely away until I take a Advil cold and sinus pill. 
 

It seems I don’t really have CH. But I also don’t know of any other headache forums or communities. To share and reach out for help. If anyone knows any I’d be happy to listen.  Thanks. 

@spp-fan

For something like this I would recommend looking into occipital nerve decompression surgery. I normally wouldn't, but if your occipital nerve sheaths are now inflamed or pressing down on your occipital nerves, it could create a cluster-like headache.

(Full disclosure: I've had this surgery. It solved this problem, which I also had, for me. I still have other issues and symptoms, but @xxx is helping me work through them with the Vitamin D protocol and @Jteira with the busting; they are both AMAZING.)

I'm not sure where you're located but I'm in Charleston, SC, and my doctor/surgeon was Dr. Marcelo Hochman, who has a heart of gold and amazing skill.

[LLL]

@trjonas I'm glad you were able to get some releif at last for part of your symptoms. Can I ask how you were able to tell what components of your headaches/symptoms were from the compressed nerves vs CH? I ask because I have clear cluster symptoms and a diagnosis, but also seem to have strong triggers from neck posture/position and neck motion and I have wondered about nerve compression and/or cervical component.

Was there any testing or imaging that was able to confirm the diagnosis of compression of the nerves?  I have had many nerve blocks over the years with some partial response but with nothing clear or repeateable.  My somewhat recent CCH diagnosis (after 11 years) does seem correct for what is going on and I am getting ready to follow the guidelines clearly laid out here at clusterbusters.  Like others, it is a long bumpy road.

@spp-fan There is a study from the 1990 that does indicate that neck position/flexion IS a factor in cluster headaches for at least some percent of patients, more so with CCH, according to the abstract. [Nuchal features of cluster headache - PubMed]. This seems true for me and has been part of why it took so long for me to get to the cluster diagnosis.

And being my first post, I do want to thank the community for all the kindness and effort that is shown across the forum.

Thank you, L

[spiny]

Hi LLL and welcome!

A MRI will tell if there is nerve compression. It is a good idea to have one to rule out 'other stuff' in the first place. 

ATB!

[trjonas]

On 7/4/2021 at 7:37 PM, LLL said:

@trjonas I'm glad you were able to get some releif at last for part of your symptoms. Can I ask how you were able to tell what components of your headaches/symptoms were from the compressed nerves vs CH? I ask because I have clear cluster symptoms and a diagnosis, but also seem to have strong triggers from neck posture/position and neck motion and I have wondered about nerve compression and/or cervical component.

Was there any testing or imaging that was able to confirm the diagnosis of compression of the nerves?  I have had many nerve blocks over the years with some partial response but with nothing clear or repeateable.  My somewhat recent CCH diagnosis (after 11 years) does seem correct for what is going on and I am getting ready to follow the guidelines clearly laid out here at clusterbusters.  Like others, it is a long bumpy road.

@spp-fan There is a study from the 1990 that does indicate that neck position/flexion IS a factor in cluster headaches for at least some percent of patients, more so with CCH, according to the abstract. [Nuchal features of cluster headache - PubMed]. This seems true for me and has been part of why it took so long for me to get to the cluster diagnosis.

And being my first post, I do want to thank the community for all the kindness and effort that is shown across the forum.

Thank you, L

Hi @LLL! 

I am VERY reluctant to contradict @spiny, who has been super knowledgeable and a huge help to me, and I don't even know if this is true: but the doctor / surgeon who performed my surgery said there was no MRI or test that could confirm damage to the peripheral nerves. He is extremely well regarded in Charleston (my city) for his expertise in this and other areas, but that doesn't mean Spiny could be right and he could be wrong. But in any case, he told me the best indicator was whether I responded to nerve blocks. If I did not, he would not have in good conscience recommended the surgery. Because I partially did, he said he felt good about performing the surgery.

It was not until a week after the surgery, when I was there to have the stitches removed, that he gave me his findings. These were: both greater occipital nerves were badly compressed and damaged. (He described the specific damage but I won't go into that here, since that doesn't actually really matter much - whether they were damaged or not does.) He was happy: we made the right call. 

He continues to have followup appointments with me and we're both happy with the way things are going!

Tiffany

P.S. In the interest of full disclosure, I am also now undergoing the full Vitamin D protocol that has helped so many people on this forum, and also Vit M busting, for the same reason. These I started in earnest after the surgery to address the other symptoms I still had. The surgery was very effective in helping me eliminate, right away, the symptoms you described and it may yet be, as my nerves continue to heal (taking tons of Vitamin B to aid this along with the healing the Vit D provides), that the surgery plays a (big?) part in eliminating in those symptoms too. In studies I read, there were two people of very similar age, condition, and onset (concussion) to me, and this same surgery eliminated all their symptoms, but it took many months for one of them and over a year for the other. Their symptoms did reduce over these time periods, so I surmise it was just the healing process. The nerves were no longer compressed but had to heal from the beating they had been taking.

 

[spiny]

Hey Tiffany! no contradiction to me. You are correct. An MRI will not show nerve damage. It will show compression. Or that is my understanding. Maybe if the nerve atrophied, it might show as smaller than normal.

I have had three over the years and all returned with 'No nerve compression present.'  That does not mean that there was not a problem, just that compression of the Trigeminal nerve could be ruled out, so that helped rule out Trigeminal Neuralgia.   They look for compression of the nerve where it comes through the skull. 

An MRI is usually recommended to rule out other conditions. 

[CHfather]

@trjonas  Just curious -- Are you taking Neurontin (gabapentin) or a similar medication as part of your post-operative therapy?  I ask because Neurontin is often prescribed in nerve-regeneration situations (and it's also sometimes prescribed for CH).

[LLL]

@trjonas Thank you for your response. I'm glad you had a pathway that had clearer indications and a positive result. For me, MRI's and other scans have all been clear or "clear enough" might be more accurate because I do have various findings on my neck such as foraminal narrowing and some bulging. That said, I've always wondered about compression, and given what you passed along from your doc about no imaging being able to show the damage, I still wonder about it. I have also read studies that seemed relevant, as does your case. 

I've mentioned compression to many docs over the years but none really seemed to indicate it was on their radar as something they were familiar with, or not relevant for me given the other symptoms and imaging. Too much seems to be unknown about the pathophysiology and the nature of the beast... I did just have a occipital block recently, which is on the CH "treatment pathway" with my current neurology doc. It did have a bit of benefit for a couple days.

I've tried the long list of meds and blocks over there years, and a long list of specialists, without much benefit. I do think the CCH is part of the picture. Is there also, nerve compression, or cervicalgia? Maybe... Hemicrania Continua has also come up in my treatment because I have very high baseline headaches in addition to attacks (and other CCH symptoms like the knot in my neck, rhino/sinus and eye swelling, etc). One odd thing that does seem uncommon is that I have a lot of nausea, as if the vagus nerve is somehow getting crosstalk or something (who knows really - that's just my imagination trying to peer inside my head :))  Maybe I'll start a new thread asking the community about nausea... 

All that said, I am grateful to have some new options thanks to this community. I wish I had found this sooner! For now, it seems busting and D3 are the way to go. RC seeds on the way as a quick way to start. I'll be watching for your updates as well - fingers crossed for good results for all.

Thanks, L

[trjonas]

On 7/6/2021 at 11:31 AM, CHfather said:

@trjonas  Just curious -- Are you taking Neurontin (gabapentin) or a similar medication as part of your post-operative therapy?  I ask because Neurontin is often prescribed in nerve-regeneration situations (and it's also sometimes prescribed for CH).

Hi @CHfather! I am not - they never mentioned it. @xxx has me taking Vitamin B to heal the nerves, though, and I take skullcap (also good for nerves) from Les' licorice regimen. 

[trjonas]

On 7/8/2021 at 5:59 PM, LLL said:

I've mentioned compression to many docs over the years but none really seemed to indicate it was on their radar as something they were familiar with, or not relevant for me given the other symptoms and imaging. Too much seems to be unknown about the pathophysiology and the nature of the beast... 

I did just have a occipital block recently, which is on the CH "treatment pathway" with my current neurology doc. It did have a bit of benefit for a couple days.

I've tried the long list of meds and blocks over there years, and a long list of specialists, without much benefit. I do think the CCH is part of the picture. Is there also, nerve compression, or cervicalgia? Maybe... Hemicrania Continua has also come up in my treatment because I have very high baseline headaches in addition to attacks (and other CCH symptoms like the knot in my neck, rhino/sinus and eye swelling, etc).

 

Hi @LLLI'm not surprised that none of your doctors know of nerve decompression surgery. Very few doctors seem to know about it, which would be pretty shocking since it can be so effective, and even costs less over time than that standard of migraine treatment botox - except that most doctors seem sadly uninformed about anything to do with clusters, HC, or even standard migraines.

I also have HC; that's been confirmed because I partially respond to indomethacin. I'm with you on the very high baseline and the knot in the neck, rhino/sinus, eye watering/blurring, etc. 

If you responded well to the greater occipital nerve block (and it sounds like you did), then the nerve decompression surgery could be an option for you.

[LLL]

Interesting. I also, one time responded to indomethacin. Another time I did not respond, or was unable to get to a high enough dose because of an NSAID allergy I have (took massive amounts of Benadryl to do the trials).  For a while I had an HC diagnosis, but current doc has me as CCH, which also fits for me. He felt that HC and CH were on a continuum of sorts. I'm planning on bringing this back up with him next appointment.

Unfortunately, the matter of occipital blocks is not straight forward for me.  I had an ablation done, greater occipital, third medial branch (?), and something else - I remember 3 nerves were blocked. Quite a while ago. Did not help, and seemed to make things worse. I just had a left and right occipital block that helped for a couple days but then really aggravated things. My assumption there is that after the blocking agents and maybe steroid wore off, the inflammation for the injections gets me. Don't really know.

Starting the busting and batch/D3 journey. Also, going to press my doctor for oxygen.

Thanks for sharing your insights and thoughts.