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Monica

IMPORTANT signs along the way

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Hello fellow sufferers,

I have just gone through a terrible month and was wondering if anyone can relate to some significant body issues I had during the clusters.  As I journey through each episode, I realize I cannot watch anything on T.V. before bed or when I wake up.  I cannot eat dinner because my stomach will bloat and stimulate an attack.  I feel a slight shift in my jaw (to the right side, where my cluster has always been), my bite has always been off.  stiff neck.  If answering, please address each of these signs.  I am so curious if all this is like the perfect storm to which we land here in the cluster universe.  Digestive, jaw issues, eye stimulus, neck pain - which all embodies over stimulation of the nervous system.  Thank you for your time.  I look forward to any responses. 

-Monica

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Hi Monica! I am familiar with the 'stiff neck' and can say, yes, that is a signal for me that a hit is coming. Any neck pain on my CH side indicates a coming hit. Many have neck pain with CH. It will also create a knot on that side of your neck at times. 

I cannot watch TV or use a computer when getting a hit. The refresh rate seems to be flickering to me, at that time and the pain level goes up immediately with screen time. If I am not getting/having a hit, I do not have an issue.

The Trigeminal Nerve feeds one whole side of your face and that quadrant of your skull. That includes the jaw. For me, the first branch to light up is the one above the eyebrow. For some it is the branch that feeds the upper molars Others, the lower molars and/or jaw. Jaw and teeth pain is common. Feeling that your bite is off at that time is not uncommon. 

I too have digestive issues, but they are not tied to CH, so no answer for you there. Sorry. 

Hope this helps!

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Hey Monica,

I typically never get bothered by TV / computer screens or lights and such, BUT I do get the stiff neck. I am constantly stretching my neck out during and after an attack.

My jaw does bother me during a headache as well. I feel the need to open my mouth and move my lower jaw side to side and get clicking/popping on the right side (my headache side).

I don’t get a bloating stomach, but I do get nauseous and can’t eat until some time after the headache is gone.

Sorry you’ve had such a terrible run this month. I hope it gets better for you soon!

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Hi Monica, 

 

I'm new here too but have also observed similar changes. My jaw seems out of line and anywhere near a hit my teeth on CH side become hypersensitive to any temperature up or down; for the last month everything I've eaten or drank has been lukewarm.

I already had weight issues pre-CH involving hypothalamus so I found it interesting that from my first attack on I've lost all appetite. I have to force myself to eat to manage my blood sugar and I suspect low blood sugar contributes to my shadows. I am also not a fan of pasta or potatoes yet those are some of the few foods I can tolerate right now and suddenly really like. 

Screens and lights don't bothers me, although I'm exhausted after an attack and don't like it too bright then. 

My most interesting observation has to do with vagus nerve. I was extremely sick 6 years ago and was left with several symptoms associated with vagus signaling, which in some diseases has a relationship between gut and brain. Of course vagus nerve signaling is linked to CH as well, which makes me think my original illness may have contributed to my development of CH.

Checking for triggers has become really important for me. Sadly I think pot may be one for me as with several others. It never touched the pain but it helped with the sense of distress and agitation that comes with it. Nitrates from cured meats are on my list.

And this week I'm testing caffeine for final confirmation. This is huge blow, I love coffee, particularly since everyone seems to use energy drinks at a treatment but it's the other way around for me at the moment. Any hint of coffee and I'm shadowing within minutes, the more I drink the stronger/longer the attack comes on. Interestingly when I was pregnant, caffeine triggered morning sickness - which made me the weirdo of the pregnant crowd at the time - so I don't wonder if it's just that caffeine and I have a funny relationship.

I'm sorry we're on this journey together but here to support.


julie

 

 

 

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Thank you everyone.  It's nice to see that you all have similar signs.  I also wonder if you all are stomach sleepers?  I am a huge stomach sleeper and wonder if that is a big reason why we get these headaches.

Thanks again,

Monica

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Monica, I have been a side sleeper since puberty. 

Dr J - You can get caffeine in capsules online. I have 200mg ones in storage for times when coffee is not an option. That may be an aid for you that way. So, if coffee is out, perhaps give that a try. I have dumped the powder on my tongue when in a bind and needed quickly.  

 

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Hello!  I literally just signed up.  I'm 42 years old and have had clusters since I was 22. I don't know if mine would be considered chronic or not. I never go a full month without one but most times they last less than a week.  About one every 3 years I will get a massive cluster lasting upwards of 45 days. I own my own business and do not have insurance so I'm only using acute treatments of immitrex 100mg. Sometimes 3-4 doses in a single day during the "massive cluster".

 

I don't experience any stomach issues or suggestive issues other than burning in my stomach from immitrex. This COULD be a small ulcer and does bother me with other medications including OTCs.

I got stiffness in my jaw and neck very badly during an attack. So badly that I don't move my neck or talk if I can help it. My sinus on my affected side sometimes swells but other times I get runny nose. Almost always my eye tears uncontrollably. During massive attacks I feel and look like a stroke victim due to swollen sinuses and sagging mouth/eyelid on affected side. 

 

I'm not sensitive to noise but light is horrific. I seek cool dark places to hide away from everyone. I will turn on the TV but no phone or computer. The TV is on so I can see as it's just about the only light I can handle.

Everything I read says we shouldn't be able to lie down but I do. I take the Immitrex (pill firm so long wait for relief) then take a shower hot shower. *hot showers numb the pain as apparently your nerves can only Transmit just so much pain at once.* then I will lay in bed with my eyes closed until the pain ends enough to function or I fall asleep. 

I could not function well enough to be a productive part of society. I was lucky because I was able to own my business which is run by myself and my family. When I can't function they cover for me. I hope you all have that level of support from yours. 

 

Last thing for now as it may or may not relate to you: with digestive issues.  My daughter is diagnosed with chronic migraine and cyclical vomiting disorder. Cyclical vomiting disorder is directly related to migraines and was described by her neurologist as abdominal migraine. You may want to discuss this with your neurologist if they are unaware of the digestive issues. 

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On 6/13/2020 at 1:10 PM, spiny said:

Monica, I have been a side sleeper since puberty. 

Dr J - You can get caffeine in capsules online. I have 200mg ones in storage for times when coffee is not an option. That may be an aid for you that way. So, if coffee is out, perhaps give that a try. I have dumped the powder on my tongue when in a bind and needed quickly.  

 

Thanks Spiny, but it's the caffeine itself not the coffee, it's still a problem with teas and colas so I guess I'm switching to decaf everything for a while. I'm only disappointed because so many here say caffeine is a big deal to help relieve attacks and seems to be one more tool I can't use. Oh well, such is my life :)

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Well, that bites. Yes, it really does help.

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I used to build websites for a living. It was too much screen time so I had to mostly retire. I wear high grade UV protected prescription sunglasses all day every day (see my avatar!). It seems to help with the light pain and discomfort.

My neck and shoulders are always messed up even though I beat the beast with busting. The TMJ does not help the situation.

I find certain sitting postures can be a trigger for me. Mostly a position like sitting up in bed watching tv or the couch can do it.

Side sleeper here, on my back I get anxiety from the gravity pulling on my lungs and the belly is a no go for comfort.

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Thank you CHFather, I read your post on preventative methods.  I've done all those things except for caffeine.  I basically figured out the Ketogenic diet on my own and have an oxygen tank on hand.  I do the D3 and the bathtub and cold packs. But all of the information in one place is very nice to have.  I have also busted, but because of the pandemic, was not able to bust with my 3 children in the home, I feel that is why the clusters were so awful this time.

Thanks again everyone!
 

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I too get the jaw and neck tightness, have had digestive issues my whole life but they predate my first remembered cluster, so I do not think they are connected. Screen time is not too bad, but bright light and especially fluorescent light kills me. I have mentioned at the headache clinic in the hospital I go too, that fluorescent lights are a horrible idea to have there. I am a stomach sleeper, used to be a side sleeper, have never noticed any changes between my sleeping position and hits. I am full blown chronic, daily hits, the only saving grace is a '10' is at most 3 times a week, the rest are 7-9. 

I find myself with no appetite during a hit, generally I will go through a few hits then the moment one ends (No predictability) I will suddenly be ravenous. I do have some tmj issues, clicking locking jaw and extremely painful catch and pop when I bite occasionally. My first diagnosis for cluster were actually attributed to tmj issues, was years before I got an actual diagnosis.

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