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Jammie73

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And I was praying it wasn't a tumor.
Aug 15^th, 2013 at 12:38pm

Every morning between 1:00 am and 3:00 am I would wake up with this horrible pain behind my right eye. This has been going on for years. My husband just knew I had a brain tumor. I was so scared. My neurologist set up the appointment for an MRI and a MRA. The day had finally came to find out what demon I had running lose in my head. When the results came back, I was overjoyed (so I thought) to find that everything came back normal. The doctor began telling me I had classic symptoms of cluster migraines. I thought to myself, "sounds so much better than surgery and chemo, I'll take it!". I left his office with all kinds of prescriptions. Seizures medications, migraine injectables, etc. As weeks pass, I began my research on cluster headaches. That's when the real fear set in. I saw youtube videos of people going through EXACTLY what I go through at 3:00 in the morning. I read articles that all validated my fear of this little known condition that wreaks so much chaos in my life. Still new to this, Thanks for the resources you provide here. At least I know I am not alone.

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Bob Johnson

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free." -Epictetus

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Kennett Square, PA (USA)
Gender: male

Re: And I was praying it wasn't a tumor.
Reply #1 - Aug 15^th, 2013 at 1:40pm

The fact that you can write to thousands of people here bears witness to the REALITY that there is life with Cluster.

We have all gone thru the fear, anger, and even despair, only to find there is a good future to be had. Survival calls for lerning how to master our "friend" by gaining knowledge, skill, a good doctor, and supporting family and friends.

So, start living here and absorbing.
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Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

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

or

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

or

Search under "cluster headache"
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Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
a careful read.
=====

Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

(Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you. Follow this chain: CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU

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« Last Edit: Aug 15^th, 2013 at 1:42pm by Bob Johnson »

Bob Johnson

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Jammie73 CH.com Newbie Offline I Love CH.com! Posts: 10	Re: And I was praying it wasn't a tumor. Reply #2 - Aug 15^th, 2013 at 3:13pm Thank you for the info. I tried the Help us Help you and it was locked. But thank you for the information. I just got the diagnosis last month although I have had this for five years. I am still learning to navigate the website so bear with me. Thank you for your kindness.
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CHsRtheDeviL CH.com Junior Offline Kill The Beast!!! Posts: 70 Downers Grove Gender:	Re: And I was praying it wasn't a tumor. Reply #3 - Aug 16^th, 2013 at 3:39am Cluster Headaches make me so angry I kinda wish that I had an operable tumor that could be fixed and these things would go away. Good luck on everything I hope you find something that works great for you and you can get these crappy things under control.
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wimsey1

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Re: And I was praying it wasn't a tumor.
Reply #4 - Aug 16^th, 2013 at 9:41am

Hello and welcome. Here's a quick list of things you should consider:

1. Find a good headache specialist-this is imperative. You don't say if you are seeing your GP, a general neuro, or a specialist. In the long run, you want the specialist.

2. Start a prednisone taper (starting around 80mg/day) You don't say you tried this but a bunch of us found good relief this way while waiting for a longer term preventative to kick in.

3. Start a preventative working up to a high enough dose to be effective in treating CHs, like 240mg/day verapamil increasing as directed up to 960mg/day. Other preventatives include Topamax, carbomazapine, oxycarbomazapine, and more. Pay attention to the doses-often we hear I tried that but the dose was too low to be effective.

4. Get an effective oxygen setup: a nonrebreather mask and a regulator that will go up to 25lpm along with a 3 liter bag. See optimask.

5. Get effective abortives, like imitrex injectables-pills are too slow-or Migranal nasal spray, it's an alternative to triptans. I use both. Consider using energy drinks along with your abortives. They can help a lot. I use double Monsters, others like Red Bull or Rock Star.

6. Keep a log or journal of your attacks, and learn to use the KIP scale at left. This may help to identify some triggers for you. Some are fairly common to all of us, like alcohol, but even that isn't universal.

It's a long list, but it returns to you the power needed to manage the beast. Good luck and God bless. lance

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« Last Edit: Aug 16^th, 2013 at 9:42am by wimsey1 »

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Jammie73

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Re: And I was praying it wasn't a tumor.
Reply #5 - Aug 16^th, 2013 at 9:03pm

I am on Topamax 200mg a day 1 in morning and 1 at night. I have sumatriptan succinate injection...not sure what that's generic for. I found the Red Bull by accident on my own..works wonders. As for the GP, I would rather lick a cheese grater! They have been treating me for sinus problems for years, finally the ENT he sent me to said he thought I needed to see a neurologist. The neurologist is wonderful. I am wondering why the oxygen was never brought up though.

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FrankF

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Re: And I was praying it wasn't a tumor.
Reply #6 - Aug 16^th, 2013 at 9:25pm

sumatriptan succinate is generic for Imitrex. I split the vials into two doses as 3 mg is as effective as 6 mg for me.

As for why oxygen wasn't mentioned, I think doctors treat so few cluster patients that most don't know about it. I asked my new Neurologist for oxygen yesterday and ended up telling the office staff where to order it and how to write the prescription.

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Jammie73 CH.com Newbie Offline I Love CH.com! Posts: 10	Re: And I was praying it wasn't a tumor. Reply #7 - Aug 16^th, 2013 at 9:42pm That's what I'm scared of. I will have to be my own advocate. I have an autistic son and I have no problem fighting his battles. I know what's right and wrong in the land of autism, clusterville is like square dancing in hell. I don't know what's going on, I just want off this ride!
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waymoz CH.com Newbie Offline I Love CH.com! Posts: 15	Re: And I was praying it wasn't a tumor. Reply #8 - Aug 17^th, 2013 at 5:06am Hi Jammie. I've used sumatriptan successful as an abortive measure from CH attacks. I've also been on the Vit D3 regime for 3 days and have found relief from my cycle. It sucks that CH happens, but it may save you from the pain! Good luck!
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Jammie73 CH.com Newbie Offline I Love CH.com! Posts: 10	Re: And I was praying it wasn't a tumor. Reply #9 - Aug 17^th, 2013 at 3:30pm Thanks. I'm going to have to read up on the vitamin thing. I have heard a lot about it.
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