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Topic: Diagnosed w/CH 16 years ago, symptoms changing (Read 322 times) |
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retrovertigo
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Diagnosed w/CH 16 years ago, symptoms changing
« on: Jan 31st, 2007, 9:54am » |
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Was diagnosed by a GP, never saw a neuro. I was told I was a classic case of CH sufferer. I was put an ergot inhaler that was useless. Moved around a lot so constantly changing docs. I tell my doctors about diagnosis and ask if there are any new treatments, but they have all brushed it off as something to deal with later. I assumed there was nothing that could help me.
Luckily, my HA's have never been as horrific as many of the posters here. If they are really intense the duration of the attack (2hrs. or less) and cycle(2-3 weeks) seems to be shorter. If the cycle is longer (two months) the HA's are not as intense. Time between cycles has levelled off at about two years (twice a year when I first got them 20 years ago). I went undiagnosed for four years because I was certain I had brain cancer and just wanted to die. I couldn't believe there could be that much pain without a tumor.
I thought I was having a very weak cycle. Six nights in a row of HA's that I could fall asleep with. Then 4 HA free days. But last night I got slammed. Ten minutes after falling asleep I woke in agony. Scheduled a doc appointment today.
My symptoms have changed in two ways. Last nights headache lasted 4+ hrs. Longest ever. It stepped down after about two hours to the point where I could writhe on the couch instead of wriggling about on the floor/pace/whine like a baby. And I've started vomitting. For first 16 years that never occurred. It started with a cycle four years ago. Happenned a couple times two years ago. Last night after vommitting an energy drink(read the board and gave it a try) I conitinued to dry heave for the whole four hours. I know these symptoms are more indicative of migraines, but last night's attack was one of the worst I've ever had. I don't feel nauseous at all while vommitting, it's almost like my head is saying"I'm trying everything I can."
Sorry for the length of this. Any info would be helpful for doc (who doesn't seem to understand what I'm going through.)
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thebbz
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Re: Diagnosed w/CH 16 years ago, symptoms changing
« Reply #1 on: Jan 31st, 2007, 2:35pm » |
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Demand a referral to the neurologist. You will be glad you did.
all the best
jb
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retrovertigo
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Re: Back from doc
« Reply #2 on: Jan 31st, 2007, 2:40pm » |
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He didn't seem to think that vomitting meant I wasn't having CH. But he used the terms CH and migraine interchangably at times. Gave me samples of Maxalt and Amerge. I think he's a good GP but is cautious with scripts. Wants me to experiment with oral triptans before moving up. I'm concerned because I don't know if I can keep the orals down. I only average three major hits every two years so it could mean years of "experimenting" before finding relief. Hopefully the present cycle will end and I can get back to my generally very high quality of life. That's the best relief, and I genuinely feel horrible for those who are chronic or who have long cycles.
Also, I suffer from psoriasis. I use a topical steroid sparingly. I used a good sized application yesterday 5-6 hrs. before big hit. Doc was unsure if there was any effect but said stop using until cycle is gone. Despite having a red scaling face I won't be using it. The fear of another attack is the only thing worse than actually having one.
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Skyhawk5
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Re: Diagnosed w/CH 16 years ago, symptoms changing
« Reply #3 on: Jan 31st, 2007, 11:13pm » |
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I get your same atypical symptoms during cycle peak, not everytime though. It's not totally uncommon to have atypical symptoms. I become light & sound sensitive also, and this isn't typical CH.
Good Luck, Skyhawk
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Bob_Johnson
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Re: Diagnosed w/CH 16 years ago, symptoms changing
« Reply #4 on: Feb 1st, 2007, 10:41am » |
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Please see my reply to "I'm so confused" in this section.
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Bob Johnson
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thebbz
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Re: Diagnosed w/CH 16 years ago, symptoms changing
« Reply #5 on: Feb 1st, 2007, 3:35pm » |
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Quote:I become light & sound sensitive also, and this isn't typical CH.
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I disagree. I believe the numbers and research bear out the fact the autonomic sensory nerves,(sight,sound touch,hearing,)are effected profoundly by CH and are fairly typical symtoms...correct me if I am wrong. Read up on Goadsby's research.
all the best
jb
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retrovertigo
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Re: Diagnosed w/CH 16 years ago, symptoms changing
« Reply #6 on: Feb 2nd, 2007, 8:46am » |
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Update: Had to use Maxalt last night. When I took it I wasn't completely sure HA was going to be a screamer. The "pill" melts instantly on the toungue, so no worries about vommitting it up. 5 minutes after taking it I was so glad I did. HA around 3 growing fast. 10 minutes after taking I was at 5 wondering if I could take another. 20 minutes after taking it I was back down to 3. 40 minutes after taking it I was at 2. Fairly confident HA wasn't worsening and I could risk sleeping. Slept like a rock and woke feeling fine. Very successful abort for that HA.
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Bob_Johnson
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Re: Diagnosed w/CH 16 years ago, symptoms changing
« Reply #7 on: Feb 5th, 2007, 9:50am » |
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Headache. 2006 Sep;46(:1246-54.
Cluster headache: clinical presentation, lifestyle features, and medical treatment.
Schurks M, Kurth T, de Jesus J, Jonjic M, Rosskopf D, Diener HC.
Background.-Cluster headache (CH) is a rare but severe headache form with a distinct clinical presentation. Misdiagnoses and mismanagement among these patients are high. Objective.-To characterize clinical features and medical treatment in patients with CH. Methods.-We established a cohort of 246 clinic-based and non-clinic-based CH patients. The diagnosis of CH was verified according to International Headache Society (IHS) criteria. We used standardized questionnaires to assess associated factors as well as success or failure of treatments. Results.-The majority (75.6%) was not treated before at our clinic-77.6% were males; 74.8% had episodic CH, 16.7% had chronic CH, in the remaining patients, the periodicity was undetermined because they were newly diagnosed. Cranial autonomic features were present in 98.8%, nausea and vomiting in 27.8%, and photophobia or phonophobia in 61.2% of CH patients. Most (67.9%) reported restlessness during attacks and 23% a typical migrainous aura preceding the attacks. The rate of current smoking was high (65.9%). Half of the patients reported that alcohol (red wine in 70%) triggered CH attacks. Eighty-seven percent reported the use of drugs of first choice (triptans 77.6%, oxygen 71.1%) with sumatriptan subcutaneous injection being the most effective drug for acute therapy (81.2%). The most frequently used preventive medications were verapamil (70.3%) and glucocorticoids (57.7%) with equally high effectiveness. Conclusions.-Apart from the IHS criteria additional features like nausea/vomiting and migrainous aura may guide the diagnosis of CH. A large number of CH patients do not receive adequate treatments. (Headache 2006;46:1246-1254).
PMID: 16942468
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Bob Johnson
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lionsound
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Re: Diagnosed w/CH 16 years ago, symptoms changing
« Reply #8 on: Feb 5th, 2007, 10:51am » |
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You could very well have more than one kind of HA happening at once. I get migraines and clusters at the same time. the symptoms get all tangled up and it's hard to tell then apart. For abortive meds you may not have to because triptans and Oxygen can work for both, but if you want to take prevents you need to know what you are dealing with.
If sympoms are new for you, see a doc! Please see a knowledgeable neurologist and get a good diagnosis. And remmeber to keep some sort of Headache diary(time, duration, symptoms, meds) or bring what you've written here to the doc.
Quote:| But he used the terms CH and migraine interchangably at times. Gave me samples of Maxalt and Amerge. |
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and also please never take different triptans within 24 hours of each other. it is very dangerous...life threatening.
Please let us know how you are doing.
PF's,
lionsound
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retrovertigo
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Re: Diagnosed w/CH 16 years ago, symptoms changing
« Reply #9 on: Feb 5th, 2007, 1:17pm » |
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I was wondering if my classic CH's were starting to overlap with migraines. All of my really bad HA's this cycle have been significantly longer than in the past. They had never gone over two hours. This cycle the HA's drop from a seven or eight back to a four after two hours, but just keep going until I am exhuasted enough to fall asleep. This has been about six hours into HA.
I took Maxalt again, the next night after successful abort. If it did anything at all it merely shaved a point or two off of worst of HA. After thrashing about with an k8 for two hours it dropped to a k5 for two hours. Then I started vomitting. Two hours after that, still at a k4, I fell asleep. It was four in the morning.
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thebbz
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Re: Diagnosed w/CH 16 years ago, symptoms changing
« Reply #10 on: Feb 5th, 2007, 2:56pm » |
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DO NOT MIX TRIPTANS.
It is not unusual for the abort that worked previously to not work the next time. Wait 24 hours and hit it with the Amerge. If your hit while your waiting try coffee to get you as long as you can, then hit it with a triptan.
Triptans do not mix with each other or ergot derivatives.
I have them both on occasion(migraine and CH). Could be your just having a bad episode as well. Do not let it get to ya.
all the best
jb
Could be your having both HA's, all the more reason to see a neuro.
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