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Six Years of Headaches, First Time Poster


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Hey All,

I'm a 26 year old male who has gotten cluster headaches since 2015. When they started, they would usually occur between September and November, occur at the same time each day, and last only 30-45 minutes. I was able to deal with that through OTC pain medications. This past Autumn, the Sept-Nov cycle came and went without a single headache. I thought that I was free. Come April 2021, they returned with a ravaging vengeance. They are now unpredictable, occurring any time of the day, for now periods up to three or four hours, and with intensity I hadn't felt before to the point I cannot function. If this continues, I don't know how I will be able to continue studying and working. I don't know where else to turn, so I am reaching out to strangers on the internet for any advice you may be able to give. Much Thanks!

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@Bushcraft39 welcome to the forum. I would start the D3 regimen immediately. If you search D3 in the search bar you will find all the info you need. This will most likely help lessen the frequency and intensity of the attacks once the vitamins finally kick in. Have you been to a neurologist? Are you able to get oxygen? It’s a life savor. I bust with MM myself and find it to be incredibly helpful. Keep us posted. 
 

kat 

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Thank you for the responses so far! I haven't tried oxygen yet, but have read about it before. In the first five years, the headaches were very predictable and did not last very long, so I was able to suck it up and use OTC pain medication to lessen the pain. Now with them sometimes lasting longer sometimes and being more intense, I have begun keeping a journal of start time, end time, and pain intensity. I plan on keeping a written record for about another month before going to a neurologist. :)

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....careful with the OTC...will tear up your stomach w/o touching the CH (well, maybe helpful for shadows)

....a journal is a most excellent tool for determining triggers, and most helpful for a headaches specialist in confirming diagnosis. know of one who considers journalling itself as an indicator of CH. note that many neuros are as clueless re CH as most PCP...ya need a specialist. at the bare minimum ask the neuros office if the doc is familiar with treatment of CH...

...an energy drink with at least 120 mg caffeine and 1000 mg taurine is especially helpful for many clusterheads....improved the effectiveness of oxygen greatly for me, sometimes all that was needed if used immediately upon feeling hit coming...

...agree with kat re D3....low risk option with high upside...

....and yeah...welcome! sorry you are in the club nobody wants to be in....

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If you don't intend to see any kind of medical professional for a month (and you anticipate that your cycle might continue for that long or longer), I would seriously consider setting up a system using welding O2.  That's a lot of pain you would very substantially reduce, and the mask and regulator could be things you would want to buy even if you decided you wanted medical O2 (and could get a prescription).

(Seems like your cycle has already gone on a longer time than your previous ones, so maybe you're hoping it might be ending soon.)

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Hi @Bushcraft39, Your introduction to CH was the same as mine, Id get these intense headaches, regular as clockwork, 3 times a day. I thought it was my back problem (lower back injury) that had spread up and trapped a nerve or something. Dr's were no help (at the time) so  I'd go and see an osteopath 3 times a week, (at a cost of £105 a week!) and it would eventually stop. Sadly it would come back many months later and I'd repeat my trips to the osteopath. then after a few years of this cycle they didnt stop. I like many others decided there was only one option. I decided to leave this life. I was lucky, a good friend of mine was worried as I had not turned up to work and broke into my house and found me. I woke in intensive care after 6 days of coma and a month later I was out. I signed up with a new Dr who thankfully knew about CH. She tried me on various treatments until we found one that worked. Daily verapamil to prevent the attacks and sumatriptan to abort the odd one that slipped through worked for me. I could function again!

over the years since, Ive worked out what to avoid to prevent triggering an attack. For me its avoiding rapid temperature changes, Alcohol, grapefruit in any quantity (it prevents many drugs working) and other things but as Ive found on here different things work for different people.

I guess what Im trying to say is keep going. I know it seems theres no hope at times but there is. if you can find a Dr that knows about CH great, if not find one that will look into it and try the various treatments. theres usually a drug out there that will work. Im new to this site and will be trying the natural alternatives like MM etc but for the last 20 odd years these meds have given me my life back. I function normally, had a successful carreer (until covid, not much call for a sound engineer during lockdown) and I havent grown boobs! (listed rare side effect of verapamil)

I truly hope you find the preventative that works for you. keep up with your notes on attacks and timings but dont wait a month. go and find a Dr that knows or doesnt mind being asked to look into CH asap. I wish you well and hope you find a way to beat the beast very soon. you will get through this and have a life again.

 

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