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Oh no what do I do


Meg
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I am new here. Not sure what to do yet. My athletic wonderful 18 year old son has a headache for a few days, L) temple goes behind the eye, starts about 4 each afternoon, the nose gets stuffy, the eyelid droopy and watery. They are not debilitating (yet) but this has worn him out, he is missing school today, it is his first one that I am aware of.

No one in the family has this headache. My husband gets migraines occasionally. Sadly, his symptoms seem classic for the cluster.

I'm thinking but would like to hear what you think. That I first need to get him into a neurologist, keep a headache diary, and after looking at some of your files I need to help him figure out what his triggers may be.

Thank you for your guidance!

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Sorry to hear of your son suffering. It definitely is a different pain to see your children hurting. 

All though some of his symptoms seem cluster like, they don't last four days. Unless maybe he is going between attacks and shadows. 

I would definitely start a log right away to give details for the doctor. Yes get in to see a neurologist as soon as possible. Cluster diagnosis comes from them doing test to eliminate other medical conditions. 

If he becomes diagnosed with cluster headaches their are many well informed people here to help you both on that path. I'm hoping you both find answers. 

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Thank you for your reply! This will be a learning curve for me and I'm hoping I'm wrong. But for the last 4 days he has had a pattern of a "lingering headache" behind the L) eye and L) forehead (w/all the symptoms above) that continues until evening, I give the extra strength Tylenol, and he falls asleep. He has had 2 episodes of severe pain that lasts about 15 minutes but is not debilitating. He wakes up tired and drained but otherwise is fine in the morning. This then repeats the next day. 

I know that I am just blabbing here as it has not been diagnosed or even looked at yet. It is just so picture book perfect at the moment. It is such a surprise and shock. I have a call out to his primary to look into it and to give us a referral to a neuro. It will all take time I know and I just hope I am being an anxious mother. 

I knew I could find some good advice here and really appreciate your time! Thank you so much!

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One other I would have your pcp do is run a complete blood test to check his vitamin D3 levels. This will save some time while they are working on diagnosis. Many here have had success with this regimen and I stay on it even when not in cycle to help with other inflammation issues. You should be able to find it in files section or search under D3 and Batch. 

Adding a link:

http://www.vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people+

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G'mornin Meg and welcome to the community!

Spot on advice from Amon!  Agree with him that these don't sound like classic cluster symptoms, but I wouldn't rule them out....number one objective is getting him into a good neurologist, preferably one who is a headache specialist to rule out other nasty conditions that mimic clusters!!

Diet changes have been reported to help by some folks....I know one longtime member here who eliminated gluten but I think that was to help his migraines.

If, in fact, your boy gets a cluster dx, the vitamin D3 anti inflammatory regimen is an excellent preventative avenue, and, with that diagnosis, the neuro should give you a script for high flow oxygen to be used as an abortive measure!

So sorry ya'll had the need to join us!! Sending pf thoughts and prayers!

Dallas Denny 

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Thank you so much Dallas Denny! I am relaxing a bit just hearing feedback from you guys. I have steps to take now and good advice that I was looking for like seeking a neuro that specializes in headaches and blood tests. This will really help stream line things! And the mimic of cluster headaches has also been on my mind. But, I imagine that my stress will not help him or anyone else in the family either. So, as the caregiver I will get some exercise so as to reduce my unknowingly spreading "bad" vibes on everyone. 

Thank you again!

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Meg, there is an online business that many folks are using for the 25 (OH) D blood test.....you order the test online, they send orders to the quest diagnostics near you, go get his blood drawn, and receive the results either online at their site or via email I believe....I haven't used them yet but know someone who has and it's much cheaper than going thru a doc.....you just need to establish his baseline, begin the regimen and retest every couple of months until he reachs the 80 ng/ml level......I'll get that link and post it for you.

DD 

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There is a list here of recommended doctors for CH:  https://clusterbusters.org/cluster-resources/  It's not updated or complete, but if you can find someone on this list, you will be better off.  Many/most neurologists don't recognize CH, and when they do, many/most make terrible prescriptions (not prescribing oxygen, for example).

Some of his symptoms sound like they might be hemicrania:  "Hemicrania continua is characterized as a continuous, strictly unilateral headache of mild to moderate intensity with superimposed exacerbations of more severe pain. During these exacerbations, one or more autonomic symptoms (ptosis, conjunctival injection, lacrimation, and nasal congestion) occur ipsilateral to the pain. Many patients report a foreign body sensation, like an eyelash or a piece of sand, in the eye ipsilateral to the pain. This headache is defined by its absolute response to therapeutic doses of indomethacin."

Here's something I'm absolutely not sure about. This is all speculative. I think you might be able to contact a local blood test provider and get a vitamin D test done. You could look up "blood test provider" on google and call one.  They might not take insurance, but the cost might not be much more than the online D test, and the results would be considerably quicker (you're looking at at least a couple of weeks to get the online test, return it, and get the results) and more reliable.  [EDIT: Looking back at Denny's post, I see that the process he's describing is potentially quicker than the one I was thinking of, where you order the kit online, it gets mailed to you, you put some blood on it, mail it back, and wait for results. But maybe what I'm suggesting would skip the middle man.]

My daughter has CH. It is very difficult to deal with that as a parent. THANK YOU for doing what you are doing!!

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Reading at the site that Denny posted, I see that it appears that they give you a prescription you can bring to a LabCorp site to get tested.  The price seems reasonable enough, and some of the reviews say the results can be obtained very quickly.  Thanks, Denny!!!!

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 Im so sorry he is in so much pain :( My Husband has suffered intense clusters that work on a clock cycle and are affected by weather as well. He has suffered for 20 years now and nothing helped him except pain killers to dull the pain, but still was not functioning blitzed out on painkillers. Mushrooms helped a bit though.

Finally after reading the work of Todd Rozen at the Mayo Clinic and searching for a medicine that would go straight to the hypothalamus we tried Clomid but did not quite last longer than 1 pain-free month- then we found Seroquel (an anti-depressant that effects the hypothamus) My husband is now cluster free for almost an entire year! Still minor headaches, but ZERO clusters now.

 

Please look into this! 

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