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joboofish
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new, scared, frustrated and pregnant
« on: Oct 29th, 2006, 2:27pm » |
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Hi everyone! I am new to this site, but unfortunately not new to cluster headaches. As far as I can tell, I have been suffering from these horrible things for at least 12 years now and am trying to be diagnosed by a Dr. with the condition now, after being misdiagnosed or ignored for years. I am episodic with clusters happening every year that I can remember either in the spring or fall (usually fall). One of my questions is that with this current bout, things have changed. I used to only get one attack a day, lasting for about 1 to 2 hours in the late morning. Now I am having about 3 attacks a day, with two usually happening at night. Could this be due to the pregnancy, or have people experienced changes like this? My next question is how to get a doctor to listen to you, believe you, and want to help get rid of this intense pain. Yesterday I ended up going to an ER because I did not know where else to turn. I'm trying to make appointments with specialists or even a family doctor and no one will see me as a new patient for 3 weeks. So, at the ER, I have high blood pressure (due to being a nervous wreck over when the next attack will happen) so they send me to labor and delivery because I am due in 2 weeks. I talked to 3 different doctors and not one of them would really listen to my symptoms and how severe the pain is. They asked me if I had tried taking a Tylenol!!! I told them I believe I have cluster headaches and even showed them the printout of the medical info from this website and aside from not admiting that they had obviously never heard of this, they said it sounded to rare for that to be the problem. I broke down crying and begged to try oxygen. They finally agreed. I could not believe it when it worked within minutes. However, none of these doctors came to find out if it had worked (I think they hoped it would not because then I would be right) and my OB said she would not prescribe me oxygen but would refer me to a neurologist. So I was sent home with the knowledge that O2 will work to take this pain away, but only a script for darvoset in hand. Sorry this is so long. I'm so frustrated. I want to give up and the thought of facing more pain filled days with no relief is almost too much to handle. Anyway, I am so glad I have found this site, so I can at least write to release some of my anxiety and fears. THanks for anyone who read this whole rambling thing.
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roy21302
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Re: new, scared, frustrated and pregnant
« Reply #1 on: Oct 29th, 2006, 2:38pm » |
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Hi, my heart goes out to you, welcome to the site I hope you will stay around and read all you can. Sorry that you have CH, but you are among friends here. Glad you have found that O2 will help you, see if you can get a supply from your doctor, if you can't I sure Johnny or one of the other will be along soon and they will tell you how to go about using welder O2. It is safe to use and worlks the same, sitick around more people with better advice will be along, take care, you'll be in my thoughts, together we can deal with this, god bless
Cheers Roy 
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NovellRed
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Re: new, scared, frustrated and pregnant
« Reply #2 on: Oct 29th, 2006, 2:44pm » |
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You are not alone. The only reason that I am alive today is because in 1983 an Internist at the Naval hospital in Naples Italy said let's try having you breathe oxygen for a while. It was nothing short of a miracle. Now when I take my first breath of O2 I know it isn't going to get any worse than it is right now and I will be getting relief in a few minutes.
There are risks using other than medical grade oxygen from medical grade tanks, and I am not suggesting it is the right answer for you, but for me I get O2 any way I can. First aid stations, fire houses, welding supply companies. No fancy breathing apparatus either, just crack the valve and breathe deep.
I know how bad they are. Sometimes you have to think outside the box, to save yourself.
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kcopelin
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good grief
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Re: new, scared, frustrated and pregnant
« Reply #3 on: Oct 29th, 2006, 8:34pm » |
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Welding O2-gotta be pure or it won't work-you can buy a welding tank on e-bay-you can buy a regulator on e-bay (make sure it goes up to 15) and you can also get clustermax. HOWEVER, I don't know about this and pregnancy-I was fortunate in that I went pain free during all three of my pregnancies. Any thoughts, ye olde wizened CH elders?
And I am so sorry you had to find us and your going through during your pregnancy. Welcome to the site, consider yourself one of the family, and remember while in labor (this is what they told me) "we prefer to call this discomfort instead of pain) 
As soon as you can, get to a neurologist-go armed with all the info from this site that you can carry (I have a binder that I add to) and a headache diary. Don't take any crap from them-its your head and you need to be there for the baby.
praying you get a break and some PF time,
kathy
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BB
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Re: new, scared, frustrated and pregnant
« Reply #4 on: Oct 29th, 2006, 9:25pm » |
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Hello Joboo,
Sorry to hear you are having such a hard time now and I am sorry to hear the doctors didnt prescribe you oxygen.
How quickly can you get to see the neurologist? Hopefully very very soon.
Just want to welcome you to the Board and wishing you all the best, for both your headaches and the comming labour.
Take care
Annette
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Linda_Howell
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Re: new, scared, frustrated and pregnant
« Reply #5 on: Oct 29th, 2006, 10:23pm » |
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Hon, to the left of where you are reading this right now are links.
Click on the oxygen link, and any other link you can find that relates to what you need. Print it out. Take it to your Dr. Some don't want to be told what to do but the more you are informed and educated....the more they may listen. Go in there armed to the teeth.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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joboofish
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Re: new, scared, frustrated and pregnant
« Reply #6 on: Oct 29th, 2006, 10:30pm » |
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Thanks everyone for the advice and info. My OB claims she is going to try and get an emergency consult for me with a neurologist. I will find out about this tomorrow. Hopefully the neurologist does not look at me as if I am crazy like my own doctor did. I know I said it already, but I am so happy my husband found this site for me. It really does help my outlook on this whole ordeal to know that others do understand my pain and do not think I am crazy. Thanks again!
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Charlotte
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Re: new, scared, frustrated and pregnant
« Reply #7 on: Oct 29th, 2006, 10:44pm » |
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good luck at the neuro. Hopefully, you will get a script for O2.
I hate that none of the Drs came to check on you to see if the O2 worked.
Charlotte
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Linda_Howell
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Re: new, scared, frustrated and pregnant
« Reply #8 on: Oct 30th, 2006, 12:14am » |
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Quote:| I know I said it already, but I am so happy my husband found this site for me. It really does help my outlook |
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Will you do me a favor? Will you please hug your husband for me and for all other sufferers? Without them we'd a lot worse off. It's supporters like him who really make me happy. Thank you to your husband.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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lionsound
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breathe
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Re: new, scared, frustrated and pregnant
« Reply #9 on: Oct 31st, 2006, 7:56am » |
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Welcome Joboo!
pregnancy can do strange things to you noggin, let alone the rest of you. I was pregnant last year and yes, my head still hurt. It's unfun and scary. I hope you have O2, that's what i used. PM me if you want to chat.
please let us know how you are doing.
Be well and Pain Free,
Rori
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joboofish
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Re: new, scared, frustrated and pregnant
« Reply #10 on: Nov 2nd, 2006, 11:50am » |
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Hi again and thanks for all of your responses. I did get in to see a wonderful neurologist on Tues. (my husband found his name on the OUCH site I think) and he quickly diagnosed me with CH. In addition, he actually had compassion and listened without judgment to my complaints and concerns unlike most of the doctors I have encounterd in the past week. It is such a relief to know that after 10 or more years I am not crazy and this pain is not just a tension or sinus headache as I have been told for years. Now I can explain to my friends and family how bad this really is for me every year and why I am anxious and depressed while this is going on. The neuro had an O2 tank in my house in less than 6 hours and this has really changed my life for the last 48 hours. He said I could also try prednisone which would be safe for the rest of my pregnancy and after having the baby and nursing he said he would like to use calcium channel blockers (is that verapamil?) as preventitive therapy for the time of year this usually happens. Anyway, the oxygen, though not 100% effective has made life so much more bearable and now I can actually start to get excited about the beautiful baby girl I am scheduled to have Nov 8th. If nothing else, dealing with CH has made my pregnancy complaints seem so insignificant. Thanks again for your support!
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Bob_Johnson
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Re: new, scared, frustrated and pregnant
« Reply #11 on: Nov 4th, 2006, 8:32am » |
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These articles won't fix all the issues but suggest you print this message and share with the neurologist. I will give him some leads.
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Re: Clusters and Pregnancy
« Reply #1 on: Oct 29th, 2004, 8:37am » Quote Modify Remove
------------------------------------------------------------------------ --------
Issues about med effects are sufficiently complex and fluid that I would work closely with your ob doc and, ideally, with a headache specialist (acting as a consultant).
Given where you are in your pregnancy, you might print out this message and show to your doc.
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CNS Drugs. 2003;17(1):1-7. Related Articles, Links
Safety of sumatriptan in pregnancy: a review of the data so far.
Loder E.
Harvard Medical School, Boston, Massachusetts, USA. eloder@partners.org
The high prevalence of migraine in women during their reproductive years means that new drug treatments for migraine, such as the serotonin 5-HT(1B/1D) receptor agonists (the 'triptans'), are likely to be widely used by women of childbearing potential. Scrutiny of these agents in an effort to detect any signal of teratogenicity is thus important. A systematic review of the medical literature was conducted to identify information regarding the safety of sumatriptan during pregnancy. This agent was chosen to be investigated because it has been available for the longest and is the most widely used of the triptan class. Information was obtained regarding the impact of migraine on pregnancy outcome, and data on sumatriptan use in pregnancy were obtained from animal studies, preclinical drug trials, postmarketing surveillance efforts, prospective pregnancy registries, national birth registries and teratogen information services. Synthesis of information from these sources is sufficient to rule out a large increase in birth defects from sumatriptan use during pregnancy and is reassuring for cases where inadvertent exposure to sumatriptan during pregnancy has occurred. However, current information is not sufficient to rule out small increases in the risk for birth defects. For this reason, caution should be exercised in making a positive recommendation for the use of sumatriptan during pregnancy.
Publication Types:
Review
Review, Tutorial
PMID: 12467489 [PubMed - indexed for MEDLINE]
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I checked drug info on medscape.com and it's o.k. for limited use in pregnancy.
1: Headache 2001 Sep;41(:813-6
Olanzapine as an Abortive Agent for Cluster Headache.
Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.
OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
===
OTC meds are not very helpful with cluster, as you know, but may be one of the few options available to you. Some folks have good luck aborting/easing an attack by applying an ice pack to the pain site. Others find very hot water also works; others have used a hair dryer blasting the pain site works! No predicting; just try.
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Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Bob Johnson
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Polly_C
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Re: new, scared, frustrated and pregnant
« Reply #12 on: Nov 5th, 2006, 9:51am » |
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Hi Joboofish
Im another pregnant CH sufferer - currently 36 weeks (and counting.... due 5 Dec). As you and I have had a very similar exprience I thought it would be nice to get in touch and say hello and you're not alone. the people here are BRILLIANT - without them and the folks at OUCH UK I really dont know what Id have done.
I have suffered CH episodically and sporadially since my early 20s. Ive certainly experienceda change to my CH during pregnancy in that the attacks have been the worst, most excruciating, frightening and debiliating Ive ever had. More frequent (up to 5 hits a day) and waking me at night - which Ive not had before, so we share this too. I feel it cant be coincidence and it's definitely down to pregnancy.
I too wasnt diagnosed until recently so have been through the same nightmare of untreated, increasing pain, misdiagnosis and bad treatment at the hands of poor listeners at my medical practice. Im now under the care of a wonderful CH doc and have my midwife on board with everything. Oxygen has given me back my sanity and my life really, together with my ability to feel relaxed, confident and happy about my pregnancy and the forthcoming birth of our son.
Be reassured that you are now far more likely to enjoy the rest of your pregancy and the birth now that you've got this support and please consider me as part of that support.
THE VERY BEST OF LUCK FOR THE BIRTH. Please let me know how it goes.
Painfree wishes.
Take care,
Pol 
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