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New member intro (Read 1270 times)
Kabuuki
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New member intro
Apr 5th, 2018 at 7:32pm
 
Hello, name is Brian I just turned 31 and am from Grand Rapid, MI USA. Been a sufferer for pretty much my entire memory so hard to gauge when it started but I wasn't officially diagnosed with CH till I was in my early twenties. But I'm one of the lucky people that get both CH and chronic occipital nerve headaches (ram's horn headaches)

When I was younger I would be in so much pain the littlest bit of light would make me vomit uncontrollably, it would happen in the middle of stores or school, was super embarrassing for my family and myself. But my mother in her "infinite wisdom" told my school that I was "faking" my headaches and I would often be dismissed because they happened far too often in their eyes. I don't think she ever actually took me to the doctor for them. But anyways this went on for years I would always be at the constant mercy of my headaches and would have to take care of myself. I would have a headache last for days.

After high school I moved in with some people that actually showed concern for me when they noticed how frequently I was having headaches and actually took me to a hospital. I had just basically accepted the demon in my head was there to stay and nobody would believe me so I was really surprised when they started doing scans and talking about treatments. My roommates also hooked me up with a neurologist who diagnosed me with CH and the occipital nerve headaches, he ran the whole gambit of preventatives but not many of them had the DESIRED effect.

Verapamil dropped my BP so low that when I'd stand up to walk I would literally drop to the ground.

Lithium destroyed who I was, I don't know if I was on too much or too low but I was at a point where I could blink or I could walk but I could not do both at the same time.

and O2 treatments would trigger anxiety attacks so half the time I'd have my breather in I was in the midst of panic.

oh yeah and Imitrex closes my throat so thats fun as well.

Basically the neurologist was getting sick of me and said there was nothing he could do. Obviously that is not the sort of thing someone in pain wants to hear. At this point in my life I had moved back in with my grandmother who had been the only real member of my family that believed how bad my headaches always were (remember me saying I used to get sick in stores? Yeah she was the one that would watch me while my mom finished her shopping) and she got almost violent with the nurse that came out to tell us that "there was nothing they could do or try"

Now my Grandmother and myself both see a neurologist (she has severe tremors) and he actually has helped with my headaches. Using a combination of Vitamin D, meditation, and botox injections every 3 months have actually reduced my amount of CH days from a minimum of 10 a month to maybe 1 every 3 months. And I rarely have my occipital headaches.

I needed to find an "outside" support so I thought I'd find a message board with like sufferers.
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Mike NZ
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Oxygen rocks! D3 too!


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Re: New member intro
Reply #1 - Apr 5th, 2018 at 8:48pm
 
Hi and welcome to the forums.

I'd not heard of occipital nerve headaches (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register) before and I can see how combining that with CH won't exactly be fun. It was also good work by the neuro who did the diagnosis as the combination of the two could easily confuse symptoms and result in different a diagnosis.

For a lot of what follows, my knowledge is based on CH knowledge (plus migraine), so some / all may not apply to your combination, so I'd really follow up with your neuro on any advice you get here so that what might benefit you for CH might have negative impacts elsewhere.

Topamax is one preventive you've not mentioned, which can work well for CH for some, but it can have similar side effects to what you've described for lithium.

For the D3, I'd have a good read of this highly detailed article (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register). It is likely that you may be missing some of the other co-factors that you need to take with the D3 and you may be on too low a dose.

Botox has had some good reports of success for migraine and I've heard of it being used for people with multiple headache types with good results. So good that you're getting a benefit from that.

It sounds like you've a great supporter with your Grandmother plus your roomates did a great job too. But it must have been real tough as a kid to not be taken seriously. Things like this can be pretty tough as an adult, but even worse for kids.

Keep reading and asking questions, but remember to be cautious around what I mentioned with us being good at CH and "headache", but not experts on occipital nerve headaches and we are not medical doctors.
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Kabuuki
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Re: New member intro
Reply #2 - Apr 6th, 2018 at 7:48am
 
I tried Topamax and Relpax for a few months. They didn't really help much, the topamax was used in combo with verapamil and I noticed it'd make my extremities tingle like they were on pins and needles. Relpax is what they gave me after that but it didn't work or give me the tingles. Neurotin is what they also prescribe me in conjunction with the tri-monthly botox shots, I only take 300 mg when I feel the demon stirring, if I take anymore than that I feel like I was shot with a tranq dart, like a harsher Midrin groggy feeling.

My little sister I found out has been having really bad headaches and it worries me, but my mother is actually paying attention now after I showed her all the documentation from my doctors shes been taking her to see a doctor and hopefully they learn from what happened to me. If I found out she was ignoring them like she did mine I would make it a point to take her to the doctor myself.

Seeing her in pain from headaches just reminds me why I hope that if my wife and I do happen to have kids that I don't pass along my demon.
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Mike NZ
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Oxygen rocks! D3 too!


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Re: New member intro
Reply #3 - Apr 8th, 2018 at 12:26am
 
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

That is a good link to research papers which cover if / by what degree CH can be inherited. Whilst there isn't a clear agreement, there seems to be a weak linkage to it being inherited but there seems to definitely be an environmental linkage.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Similar, but for your other headache type, which reports a 1-2% risk.

So no perfect answer other than somewhere between possible and unlikely.

Nobody who has really experienced headaches would wish them on someone else, especially someone close to us.
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