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ria369
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Pregnancy and Cluster Headaches
« on: Jul 1st, 2004, 4:35am » |
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I'm a 31-year old female suffering from epidsodic clusters since I was about 15 years old. My clusters have progressively gotten worse, meaning each cluster lasts longer in duration (up to about 8 weeks) and the severity is about a kip8-10, with about 1 or 2 trips to the ER during each cluster. My remission period has typically been 12-14 months.
I'm currently amidst a cluster and am on 240 mg of verapamil daily, and just today I went up to 480mg. I've been house-bound for the past 2 weeks and I'm only on the fourth week of this cluster. The verapamil doesn't seem to offer any benefits, but we'll see with the increase. Plus immitrex injections - the immitrex injections work like a charm, however I'm getting about 3-4 CH per day (kip 8-10) and I'm not "supposed" to give myself 3-4 injections per day (although I always do - I'm afraid I might kill myself if I don't give myself a shot).
My husband and I desperately want kids and we're close to starting a family, however I'm perplexed as to how to handle pregnancy if I were to go into a CH episode. I can in no way handle the pain without the immitrex injections. Yet, it's not possible to ingest all these medications while pregnant.
I'm wondering if any other women out there have gone through pain free pregnancies, and/or how they've handled the pain either with child or after birth. I can't imagine the strength and bravery of women out there who handle CH and motherhood. The pain I receive daily is (sadly) enough to make me think that motherhood is an absurd option for me.
I've heard (what I believe to be) myths that pregnancy changes a woman's body and therefore, terminates cluster headaches, just like women who enter into menstruation often find that their migraines or CH stop altogether.
If any women out there who suffer from CH and have gone through pregnancy have any advice, please share. I'm depressed as ever. I'm at the phase where I'm beginning to think there's no end, that my episodic clusters will turn into chronic clusters (you know the drill).
Ria
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don
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Re: Pregnancy and Cluster Headaches
« Reply #1 on: Jul 1st, 2004, 5:35am » |
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Ria I obviously cant answer your question but I sure empathasize with any woman sufferer facing those decisions.
Your tougher than I am.
Probably better looking to !
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Grandma_Sweet_Boy
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Re: Pregnancy and Cluster Headaches
« Reply #2 on: Jul 1st, 2004, 7:22am » |
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I had 3 kids and was cluster and migraine free throughout the entire pregnancy. Sadly, they always came back but it was pretty much 9 months of being PF with my head. I'm sure you'll hear from lots of the other gals on this one. Good luck to you.
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Kris_in_SJ
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Re: Pregnancy and Cluster Headaches
« Reply #3 on: Jul 1st, 2004, 9:39am » |
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Hi Ria,
My clusters didn't start until I hit the big "40", so I can't speak from experience. Much of what I've read, though, indicates that women seem to go into remission during pregnancy - unknown why. My gues would be increased Seratonin levels and surging hormones.
There are some good articles on this, but talk to your doc. Just think ... 9 PF months!
Hugs and good wishes,
Kris
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Bob_Johnson
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Re: Pregnancy and Cluster Headaches
« Reply #4 on: Jul 1st, 2004, 11:00am » |
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Title: Triptan safety--latest statement
Post by Bob_Johnson on Jun 1st, 2004, 9:47am
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Since this is a report on medications and not on the condition being treated, I believe it would be O.K. to apply these findings to folks with Cluster. NOTE: there are no comments about using triptans at the high/multiple dosing which is often done by cluster patients. (Treat everything below the line as a quotation. These are selected para. from the total report.)
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Consensus Statement: Cardiovascular Safety Profile of Triptans (5-HT1B/1D Agonists) in the Acute Treatment of Migraine
Headache 44(5):414-425, 2004. © 2004 Blackwell Publishing
Posted 05/25/2004
Abstract
Background: Health care providers frequently cite concerns about cardiovascular safety of the triptans as a barrier to their use. In 2002, the American Headache Society convened the Triptan Cardiovascular Safety Expert Panel to evaluate the evidence on triptan-associated cardiovascular risk and to formulate consensus recommendations for making informed decisions for their use in patients with migraine.
Objective: To summarize the evidence reviewed by the Triptan Cardiovascular Safety Expert Panel and their recommendations for the use of triptans in clinical practice.
Participants: The Triptan Cardiovascular Safety Expert Panel was composed of a multidisciplinary group of experts in neurology, primary care, cardiology, pharmacology, women's health, and epidemiology.
Evidence and Consensus Process: An exhaustive search of the relevant published literature was reviewed by each panel member in preparation for an open roundtable meeting. Pertinent issues (eg, cardiovascular pharmacology of triptans, epidemiology of cardiovascular disease, cardiovascular risk assessment, migraine) were presented as a prelude to group discussion and formulation of consensus conclusions and recommendations. Follow-up meetings were held by telephone.
Conclusions: (1) Most of the data on triptans are derived from patients without known coronary artery disease. (2) Chest symptoms occurring during use of triptans are generally nonserious and are not explained by ischemia. (3) The incidence of serious cardiovascular events with triptans in both clinical trials and clinical practice appears to be extremely low. (4) The cardiovascular risk-benefit profile of triptans favors their use in the absence of contraindications.
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These data should be interpreted in view of characteristics of the patient population in migraine clinical trials. Generally, controlled clinical trials with triptans excluded patients with cardiovascular risk factors including known ischemic heart disease, symptoms or signs consistent with ischemic heart disease, cardiac arrhythmias requiring medication, and supine diastolic blood pressure >95 mm Hg and/or systolic blood pressure >160 mm Hg. Thus, the clinical trials data cannot be generalized to migraine sufferers with cardiovascular risk factors.
Triptans are associated with a modestly elevated incidence of chest symptoms (ie, triptan sensations) relative to placebo in well-controlled clinical trials that excluded patients with significant cardiac risk factors or known ischemic heart disease. The chest symptoms in clinical trials were generally transient, mild, and nonserious.
Given the widespread use of triptans, the risk of serious cardiovascular adverse events during postmarketing surveillance appears to be very low. While the risk of a serious cardiovascular event during triptan use appears to be very small, it cannot be dismissed. Serious cardiovascular events, some of which resulted in death, have been reported in association with triptans during postmarketing surveillance. The causal association of triptan use with serious cardiovascular adverse events is difficult to determine based on the postmarketing surveillance data alone.
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Re. special needs of women. Both of these in HEADACHE QUARTERLY, Vol X, #2, 1991: "Women and headaches:a comprehensive approach", p. 31-36. "Special considerations in the management of headache in women", p. 37-43. The last one focuses on role of hormones in headache and how medications must be altered.
(You can get these articles via your library Interlibrary Loan program or, perhaps, at your hospital's medical library.)
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ria369
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Re: Pregnancy and Cluster Headaches
« Reply #5 on: Jul 1st, 2004, 11:05am » |
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Thanks to all for responding - I really appreciate it.
I was wondering if I could ask "Grandma_Sweet_Boy" a question: how did you handle going into an episode with children? How did you do it? Did you have longer remission periods when the children were babies and/or toddlers, or did you have someone there to care for the babies if and when you went into a cluster? Also, how did you handle pain medications (assuming you used them) while breast feeding?
I find you to be a very strong woman.
Any advice or wisdom you have to share is more than welcome.
By the way - how are your CH of lately?
Ria
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Grandma_Sweet_Boy
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Re: Pregnancy and Cluster Headaches
« Reply #6 on: Jul 1st, 2004, 7:25pm » |
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Y'know I re-read my post and it kind of made it sound like I had all 3 kids at the same time - NOT!
Strangely enough while I was still breast feeding, I didn't have headaches, other than migraines which can be dealt with.
I'm actually one of the more fortunate among us. I generally only have one or two cycles in a year - mostly spring but now and again the fall just to throw a curve my way. Another good break for me was that mine are the ones that attack after you've gone to sleep. I don't think I've ever had one in the day time hours. They generally hit about 2 hours after I go to bed so would be pretty much settled other than shadows.
I was very luck with a strong supporter at the time and he could diaper a baby and scrub a toilet as well as I could so he simply took over the reins during my 6 to 8 weeks of cycle time.
Perhaps you too will find that you go into remission whilst pregnant. Unfortunately, there's no way to know until it happens.
Feel free to contact me anytime though either through PM or my email address which is on my profile.
Good luck to you and your hubby. Trust me, the kids do make it all worthwhile.
Hugs to you.
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Sean_C
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Re: Pregnancy and Cluster Headaches
« Reply #7 on: Jul 1st, 2004, 8:42pm » |
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What about 02, just a thought I'm no doc.
Hope all goes accordingto plan 
PFDAN to you
Sean..........
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Grandma_Sweet_Boy
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Re: Pregnancy and Cluster Headaches
« Reply #8 on: Jul 1st, 2004, 9:03pm » |
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Sean - excellent suggestion. My kids are now 30, 32 and 39 and back then - the doctors had more of a tendency to shoot your butt full of demarol or give you other strong pain meds in some attempt to knock you silly. 02 is something relatively new and I should apologize to ria for not thinking of it. Perhaps that would be the idea for her - Lord knows it seems able to pretty much stop them in their tracks.
Thank God for those of you who are so much more informed than we ever were 30 some years ago.
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Sean_C
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Re: Pregnancy and Cluster Headaches
« Reply #9 on: Jul 1st, 2004, 9:14pm » |
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on Jul 1st, 2004, 9:03pm, Grandma_Sweet_Boy wrote:| Thank God for those of you who are so much more informed than we ever were 30 some years ago. |
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GSB,
I didn't know you were a veteran Clusterhead
24 years for me, and the hell we went through just trying to get someone to understand, alone, was enough to believe we were hopeless 
I'm glad your in our boat, its always nice to row together
Sean
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Grandma_Sweet_Boy
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Re: Pregnancy and Cluster Headaches
« Reply #10 on: Jul 1st, 2004, 9:24pm » |
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I just am thankful my doctor recommended this web site to me. The people here are responsible for pulling me through a long and tough cycle when it started the beginning of Feb. and didn't see fit to leave me until the end of May. I'm just way toooooo old now for this crap and it beats the hell out of me, both body and soul. If I hadn't been able to read all that I did, I'm honestly not sure that I would have made it through. I was pretty much ready to throw in the towel.
Pretty tough to survive on 3 or 4 hours sleep for that many weeks and still have to get up and go to work every day. Thank goodness for the PF times.
Enuff of the whining now - you're right, the more folks pull together the better off we all are. Keep up the good fight.
Carol
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Sean_C
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Re: Pregnancy and Cluster Headaches
« Reply #11 on: Jul 1st, 2004, 9:33pm » |
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Carol we have an important rule here.................we never throw in the towel............ever 
You have hundreds of people just like you here that care, and know exactly the way you feel........exactly. Doesn't that seem strange, but its true. You should go to the convention, your friends will be everywhere
PFDAN to you my friend
Sean
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Grandma_Sweet_Boy
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Re: Pregnancy and Cluster Headaches
« Reply #12 on: Jul 1st, 2004, 9:52pm » |
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Thanks Sean - and to you too my friend. Not to worry, I truly plan to hang around long enough to make sure my kids have to one day look after me!!! - I figure my revenge is to pay them back for their teenage years!
My aim is to make convention next year.
It wasn't until two months ago that I actually met another CH person and she actually lives in my town and we share the same dr. and neuro. Very odd in this little town of ours and then a week or so after that we had the honour of meeting Doug Wright who is the big shooter for the Canadian branch of OUCH.
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ria369
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Re: Pregnancy and Cluster Headaches
« Reply #13 on: Jul 2nd, 2004, 2:54am » |
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Much thanks to all of you...you are all so kind. I'm new to this website and I'm happy to have found you. My current neurologist did not recommend O2, but a previous neurologist did (unfortunately he moved away). I'm going to see my primary care physician tomorrow and tell him that it's time someone prescribes O2 for me. My neurologist is in high demand and it's difficult to get an appointment to see her; I made an appointment back in April (at the onset of my current cluster) and the first available date she could see me is July 6. It can be frustrating, however my general practitioner is a kind man who will support whatever is necessary for the pain.
I'm glad to hear that you are open to share your wisdom with me - my husband is a dear man who will be able to change a diaper and scrub a toilet for the 6-8 weeks as well! I'm so thankful to have a compassionate husband to help me navigate my way through this craziness.
Many of my CH come at night also, but lately I've also been getting some in the early evening/late afternoon. I'm currently using immitrex injections (thank goodness for those). Unfortunately, I'm experiencing rebound headaches for the first time ever. They hurt. I took some ibuprofen, but am wondering if anyone knows of a better solution. It's difficult to do anything because the tension in my neck, shoulders, and head is very painful. It goes away for a little while with a shot of immitrex, but creeps back. I would even say that it's hard to fall asleep at night because of the painful rebound headaches, yet I don't want to become addicted to yet another pain medicine (what a vicious cycle!).
Thanks again. All of you - this is very gratifying.
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Superpain
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Re: Pregnancy and Cluster Headaches
« Reply #14 on: Jul 2nd, 2004, 3:38am » |
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OXYGEN! Have you tried it?
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Chris
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Paige
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Re: Pregnancy and Cluster Headaches
« Reply #15 on: Jul 2nd, 2004, 9:10am » |
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When I was pregnant, I completely skipped my CH cycle. But, after I had him, I hit a cycle within 3 months.
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Crying
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Re: Pregnancy and Cluster Headaches
« Reply #16 on: Jul 3rd, 2004, 1:21am » |
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Hi. I'm 38 and have had migranes/improperly diagnoised CH since I was 12. Durring both my pregnancies my headaches pretty much stopped. My first son died of SIDS and the headache woke me up the day of his funeral. With my second the headaches didnt start again until about 1 year after I stopped breastfeeding or about 18 months after Ken was born. He's a healthy active 7 year old. Pretty understanding of when mom is feeling sick. Luckly we live next door to grandma and she can watch him if I need to go to the ER. Hubby is great and very supportive but he is currently on kidney diaylisis. Sometimes it is very hard and I feel like I am letting my family down but at the same time I am so glad I have Kenny. I thought I would never be able to get pregnant again. Then 6 years later God gave me and my husband miracle. As hard as some days and nights are they are worth it.
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Melissa
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Re: Pregnancy and Cluster Headaches
« Reply #17 on: Jul 4th, 2004, 8:50pm » |
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I have 2 kids and was PF during each pregnancy. My cycle came back approx. 1 year and 1 month after my first child was born, and 2 & 1/2 weeks after my second child was born.
I wish I could bottle up whatever it is that suppresses them while I was pregnant. 
mel
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hdbngr
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Re: Pregnancy and Cluster Headaches
« Reply #18 on: Jul 7th, 2004, 1:02pm » |
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Many women notice that their headaches get much better during pregnancy, but if you have a flare up, you can:
*use O2 all throughout your pregnancy. O2 is one of the safest and most effective things to use.
*Take Periactin, a prescription alllergy medication that has been around for 30+ years. A number of studies were done that found it helped some pregnant women when used as a headache abortive.
*Compazine, an anti-nausea medication has been prescribed during pregnancy and may provide some help.
*Use massage to help release the tension in your shoulders and your neck.
What is wonderful is you have a little piece of wonderful to take home with you. It sounds scary, but it's worth it.
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GAMom
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Re: Pregnancy and Cluster Headaches
« Reply #19 on: Jul 20th, 2004, 6:11pm » |
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New to the board but wanted to let you know that I was totally headache free during my 2 pregnancies. It was glorious. My headaches came back about a month or so after my daughters were born but I was still breastfeeding when the headaches returned. On the way to the doctor this Monday, actually, to discuss CH and how I think I have them instead of migraines.
Good luck!
Tonya
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lisa h
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Re: Pregnancy and Cluster Headaches
« Reply #20 on: Jul 21st, 2004, 1:00am » |
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Wow. Can I relate! I wanted kids too and wondered how that could be possible with all the meds I was taking. If I went off the meds and got pregnant, I thought for sure a cluster headache would send me into premature labor. Then, like you, I thought, what kind of mother would I be when I had one. About 4 years ago, in the middle of a cluster cycle, a doctor suggested physical therapy because of the knots and muscle spasms in the left side of my neck and between my shoulders. I started very slowly and gradually worked my way up to a full strength weight lifting program at a health club. Almost right away I noticed improvement in the number, length and duration of the cluster headaches and soon they stopped altogether. I went off all drugs and was in very good physical shape. The best I had felt in the 18 years since I'd started getting them. Then, boom, I got pregnant! Never had 1 episode during the whole pregnancy, praise the Lord! I breast fed for over a year and a half and as soon as I tapered off from the bf, the headaches began!!! Ugh! My son just turned 2 and I am in the middle of a bad bout. Needless to say, during my pregnancy, I stopped working out. I tried after my son was born but just couldn't manage to work a full time job, care for my son and family AND go to the gymn. I'm currently all drugged (sp?) up again, waiting to get into the nero. but I did breakdown and purchase a home gymn at Walmart relatively inexpensively. I don't know if it was all just a coincidence but I am willing to try ANYTHING to make these go away. My home doc. put me on a course of prednisone and I've felt better for the 3 days I've been on it so I started working out. We'll see. Anyway, for what it's worth, it can be done!!! Don't give up. My 2 year old seems to handle it better than I thought when I get them. He crawls around me and says "mamma sick" "head hurt." I heard him "pretending" to cry the other day and rushed into my bedroom to find him with my O2 mask over his face pretending to moan! (It wasn't turned on, he was just pretending.) Kind of made me feel funny.
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