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Hi all from another cluster sufferer.. (Read 927 times)
crofty-1988
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Hi all from another cluster sufferer..
Aug 2nd, 2011 at 4:29pm
 
Hi to all, im Charlie,I was diagnosed with cluster headaches not long after i had my first son aged 20, now 23 and iv had a lovely break through my second pregnancy and now they are back, with a vengeance! Started when I was 8 months pregnant with what i thought was extreme toothache, couldnt cope and had to see dentist several times, who told me several times there is nothing wrong with my teeth. Doctors diagnosed me with extreme sinusitis and kept prescribing steroid sprays, no relief.. just hit me today that the pain only lasts 15 minutes and starts in my right temple (only ever had cluster headaches on right hand side of head) and its afftecting mainly my eye trough to my nose, temple and all of my teeth on the right hand side. Iv been off my medication since we started trying for a baby and now iv given up breastfeeding im going bacl for more asap, the pain seems a lot worse than what i remember the only pain relief im getting is by taking enough codeine to knock me out after banging my head off the wall! arrghhh! nice to know there are other sufferers out there though! Smiley nice to meet y'all xx
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bejeeber
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Re: Hi all from another cluster sufferer..
Reply #1 - Aug 2nd, 2011 at 4:52pm
 
Hi Charlie,

Although we can't be encouraging self diagnosis here, I'll mention some stuff that could help you find some major relief if you get diagnosed with CH by a headache specialist. It appears very common for a woman's first CH bout to occur during or right after a pregnancy.

High liter flow 100% oxygen to abort the hits! Works great. Non toxic. It has hordes of devotees here, but doctors are mostly in the dark about it still. That oxygen info link to the left of this page is where ya wanna read up on it.

The CH vitamin D3 regimen for prevention. Here's the discussion topic: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

You getting night hits? Melatonin 9 mg to 18 mg before bed helps some prevent those hits.
This is thought to be the best form: n-Acetyl-5-Methoxytryptamine

For years now CH'ers fed up with the meds have been having some impressive success - even to the extent of preventing entire cycles - with the clusterbusters approach (I'm not sure about vit D3 and melatonin, but I figure this clusterbusting wouldn't be something you'd do while breastfeeding). Here's a Newsweek article on clusterbusters and a good video talk by a fellow CH'er:
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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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crofty-1988
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Re: Hi all from another cluster sufferer..
Reply #2 - Aug 2nd, 2011 at 5:49pm
 
Thanks, im going to talk to my doctor about the o2 thing tomorrow but i doubt theyl be able to help and it takes so long to see my cluster headache specialist, maybe she can phone him though. I was diagnosed 3 years ago so im just trying to recognise the come back, yep up every three hours on the dot through the night Sad thanks again, i had to stop meds whilst trying to conceive, being pregnant and breast feeding but im doing none of the above now so hopefully il be ok soon! thanks again Smiley
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Jeannie
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Re: Hi all from another cluster sufferer..
Reply #3 - Aug 2nd, 2011 at 5:54pm
 
Charlie,

Please... really, really push for the o2.    It truly is life changing. 

Jeannie
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"It's all a grand illusion when you think you're in control." ~ Kenny Chesney
 
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Bob Johnson
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Re: Hi all from another cluster sufferer..
Reply #4 - Aug 2nd, 2011 at 7:33pm
 
Headache. 2009 Jan;49(1):136-9.
Cluster headache during pregnancy: case report and literature review.

Giraud P, Chauvet S.

Centre hospitalier d'Annecy, Service de Neurologie, Metz-Tessy, France.

A 32-year-old pregnant woman presented with cluster headache (CH) during the third trimester of a normal pregnancy. Pure oxygen mask inhalation was ineffective, and intranasal lidocaine applications were realized associated with oral methylprednisolone, given at 1 mg per kg once daily. These treatments rendered the pain tolerable and the pregnancy went to its term with no consequence on the baby. This case of CH attack during pregnancy raises the issues of the influence of sexual hormonal changes in women with CH and the way to treat this disease in such circumstance. To date, there are no therapeutic guidelines available; this case suggests some possibilities.

PMID: 19125883 [PubMed]
=========
Ann Pharmacother. 2008 Apr;42(4):543-9. Epub 2008 Mar 18.
Use of 5-HT1 agonists in pregnancy.

Evans EW, Lorber KC.

Department of Clinical and Administrative Sciences, College of Pharmacy, University of Louisiana at Monroe, Monroe, LA, USA. eevans@ulm.edu

OBJECTIVE: To report and evaluate available data on the use of serotonin 5-HT(1) agonists (triptans) during pregnancy. DATA SOURCES: A PubMed search, limited to English-language articles on human subjects, was conducted (1990-December 2007) using the search terms pregnancy, migraine, and the individual triptan drug names. In addition, the manufacturers of all 7 available triptans were contacted regarding the existence of a pregnancy registry for their drug(s) and the availability of registry reports. STUDY SELECTION AND DATA EXTRACTION: All retrospective and prospective studies reporting on pregnancy outcomes after the use of a triptan were included and critically evaluated. Data from all available manufacturer-sponsored pregnancy registries were also included. DATA SYNTHESIS: Safe and effective treatment of migraine during pregnancy is imperative. DATA INVOLVING SUMATRIPTAN AND, TO A LESSER EXTENT, NARATRIPTAN AND RIZATRIPTAN, EXIST PRIMARILY REGARDING EXPOSURE IN THE FIRST TRIMESTER. THESE DATA SHOW NO SIGNIFICANT DIFFERENCES IN CONGENITAL MALFORMATIONS OR POOR PREGNANCY OUTCOMES WHEN COMPARED WITH EXPECTED RATES IN THE GENERAL POPULATION OR WITH THE OBSERVED RATES IN CONTROL SUBJECTS. THERE IS VERY LITTLE INFORMATION REGARDING EXPOSURE IN MIDDLE AND LATE PREGNANCY. CONCLUSIONS: SUMATRIPTAN APPEARS TO BE A SAFE TREATMENT ALTERNATIVE FOR PREGNANT WOMEN WHO EXPERIENCE NEW-ONSET OR WORSENED MIGRAINES IN THE FIRST TRIMESTER. FURTHER OBSERVATION IS NEEDED PRIOR TO RECOMMENDING ITS USE IN LATER TRIMESTERS. BASED UPON AVAILABLE DATA, THE OTHER AGENTS IN THIS CLASS CANNOT BE RECOMMENDED FOR USE DURING PREGNANCY AT THIS TIME.

PMID: 18349309 [PubMed]
--------------------------------------------------------------------------------


Ther Drug Monit. 2008 Feb;30(1):5-9.
Triptans in pregnancy.

Soldin OP, Dahlin J, O'Mara DM.

Department of Medicine, Georgetown University Medical Center, Washington, DC 20057, USA. os35@georgetown.edu

The triptans are a class of tryptamine-based drugs indicated for in the treatment of migraine headaches. The triptans act as serotonin (5-hydroxytriptamine) (5-HT) agonists by binding to various serotonin receptors, causing vasoconstriction and neuronal inhibition to alleviate migraines. There are 7 types of triptans currently available on the U.S. market: almotriptan, eletriptan, frovatriptan, naratriptan, rizatriptan, sumatriptan and zolmitriptan. The objective of this study was to examine the use and effects of triptans in pregnancy. ALTHOUGH THREE OF THE TRIPTANS HAVE PREGNANCY REGISTRIES MAINTAINED BY THE MANUFACTURER, TRIPTAN USE IN PREGNANCY HAS NOT BEEN EXTENSIVELY STUDIED. INFORMATION ON THE USE OF SUMATRIPTAN DURING PREGNANCY IS RELATIVELY MORE ABUNDANT, BECAUSE IT HAS BEEN ON THE MARKET LONGER THAN THE OTHER TRIPTANS AND MAY ALSO HAVE A HIGHER PERCENTAGE OF THE MARKET SHARE. THERE ARE NO DATA TO SUGGEST TERATOGENICITY FOR ANY OF THE TRIPTANS, ALTHOUGH PRETERM BIRTH RATES APPEAR TO BE ELEVATED.

Publication Types:
Review

PMID: 18223456
=====
Cephalalgia. 2009 Jan 19. 
Treatment of cluster headache in pregnancy and lactation.

Jüergens TP, Schaefer C, May A.
Department of Neurology, University of Regensburg, Regensburg, Germany.

Treatment of cluster headache in pregnancy and lactation. Cephalalgia 2009. London. ISSN 0333-1024

Cluster headache is a rare disorder in women, but has a serious impact on the affected woman's life, especially on family planning. Women with cluster headache who are pregnant need special support, including the expertise of an experienced headache centre, an experienced gynaecologist and possibly a teratology information centre. The patient should be seen through all stages of the pregnancy. A detailed briefing about the risks and safety of various treatment options is mandatory. In general, both the number of medications and the dosage should be kept as low as possible. PREFERRED TREATMENTS INCLUDE OXYGEN, SUBCUTANEOUS OR INTRANASAL SUMATRIPTAN FOR ACUTE PAIN AND VERAPAMIL AND PREDNISONE/PREDNISOLONE AS PREVENTATIVES. IF THERE IS A COMPELLING REASON TO TREAT THE PATIENT WITH ANOTHER PREVENTATIVE, GABAPENTIN IS THE DRUG OF CHOICE.

WHILE BREASTFEEDING, OXYGEN, SUMATRIPTAN AND LIDOCAINE FOR ACUTE PAIN AND PREDNISONE/PREDNISOLONE, VERAPAMIL, AND LITHIUM AS PREVENTATIVES ARE THE DRUGS OF CHOICE. As the individual pharmacokinetics differ substantially, adverse drug effects should be considered if unexplained symptoms occur in the newborn.

PMID: 19170693
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crofty-1988
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Re: Hi all from another cluster sufferer..
Reply #5 - Aug 3rd, 2011 at 7:49am
 
Hi, thanks for all of that..
Im no longer pregnant or breast feeding, although  interesting to read, my headaches came back in the third trimester of my pregnancy, not as bad as they are now though but almost certainly in a 'cluster' manor! Then I was headache free until I stopped breastfeeding.
I asked my doctor for the o2 today and she said she'd never heard of that and put me on 12 week waiting list to see neurologist.. although if nothing has improved im pretty sure il have hospitalised myself anyway lol! thanks again all Shocked)
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« Last Edit: Aug 3rd, 2011 at 9:49am by crofty-1988 »  
 
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